07/22/09

Friday June 11, 2004 Day +141

Christopher's Angel Day

Today at 4:00 pm Christopher Joseph Migliozzi became an angel. He died with grace and dignity in his Mama's arms, with his mama and daddy holding him tight. He was surrounded by his family, doctors and nurses who helped take care of him.

Christopher was on maximal life support, and 100% oxygen, however his oxygen saturations began quickly decreasing. His lungs somehow became extremely damaged, and his body couldn't maintain proper oxygenation. The doctors still don't know what happened to his lungs. We asked to have his heart and liver donated, and after the transplant consortium reviewed his records they felt they were too damaged. He was dying too quickly anyway, he would never have made it to surgery.  We decided not to have an autopsy done to determine final cause of death.

Christopher held on until his Grandparents, Aunt Lindsay, Uncle Brad and Pastor could make it. He fought until the second he passed away, giving everybody the gift of giving him a kiss good bye.

Our lives will never be the same. We held out hope until the very end. Our hearts are destroyed. We are blessed to have Christopher as our little boy, and honored to be his parents. Every breath we take is for  Christopher for now until eternity. I can't wait until the day when we join him in heaven one day.

Thursday June 10, 2004 Day +140 12am

Up and down we go on our roller coaster....   This morning things were looking a little grim.  His blood gases were bad and he was not doing well on the Osillator ventilator.  The respitory therapists had noticed over the last week or so that when they bag Christopher during suctioning  his oxygen saturations go to 98% or higher.  The doctors thought that we should try him on the conventional vent and see how he does.  After an hour or so of craziness getting him switched over from one vent to another, his saturations and gases were much better.  He also had to be reintubated, the doctors had to put a larger size endotracheal tube in his throat.  Each big move today was "dangerous" so it was a scary morning, however he stayed relatively status quo for the day on a decent amount of oxygen support and pressures, but nothing too terribly high.

Tonight when we got back from dinner his oxygen saturations were lower and his gases not so great.  No particular reason.  So here we are again waiting to see what another day brings us.

Some good news is that his heart is doing great, they told us he had the strongest heart and blood pulses on the unit! Also, his liver numbers are back to normal. His white blood cells still remain a mystery and were 77,000 this am (normal is 6-10,000). At one point today the doctors had talked about doing a blood exchange. They would take his blood out, and put new blood in. They would do this by taking 10cc of his blood out, than putting in 10cc of new blood over and over until they replaced his entire blood volume twice. For now this idea is on hold. When I left at midnight  his white blood cells have come down to 55,000.  We are hoping for his lungs to show us any signs of improvement.  The doctors are very concerned about infection still but can't put their finger on what it could be. We do think all those white blood cells are in the lungs attacking something which could account for his poor oxygenation. He still has no positive cultures showing any sign of bacteria, virus or fungus, and no fevers! We also got an abdominal ultrasound today to make sure there was nothing weird like a burst appendix or burst ulcer-everything clear.

Thank you Brad W. for coming to visit.  Your encouragement and optimism continues to give us hope.  Thank you Sandra for bringing a very tasty dinner and your smile and optimism.. You fed us, and another tired transplant mom. 

Thank you Dr. Kahler for joining us in prayer and anointing Christopher will oil.

Lastly, thank you to all of Northrop Grumman for your generous donation of PTO hours.  Once again you have come through for us and allow me to take time off to be with my family.  We feel truly blessed by your generosity and prayers.

Thursday June 10, 2004 Day +140 9am

Blood gas numbers aren't great and we had to go back up on his oxygen, the doctors are thinking about putting him on another type of vent.

Wednesday June 9, 2004 Day +139

Not a very progressive day.  We more or less stayed on the same vent settings all day with no change in status.  His white blood cell count is up to 70,000 with still no sign of infection.  No cultures have grown on anything.  The doctors are somewhat stumped.  He is still swollen, and it is hard to tell if his  lungs are not improving or if they are healing. It has become very difficult to sit at his bedside and wonder what is going on in his little body.  He shows signs of Christopher once in a while when he shrugs his eyebrows. I think the doctors don't feel positive about many things. We got another "talk" . In my heart, I still don't think it is time yet. I still see him fighting. I asked Christopher for a sign yesterday and he moved his foot while he was under heavy sedation. His heart is still strong, his liver bounced back, and the bedsore on his head is healing very nice. I feel these are all good signs, no matter what some of his other numbers might read (his blood gas numbers are still very bad).

We are so scared.  This has been a roller coaster ride everyday and feel so helpless.  Our Geneticist and oncology fellow has been so optimistic and keeps us going.  Thank you Dr. Kahler and Dr. Williams for being our rock. Thank you nurse Katie for loving our boy so much.

Please keep the prayers coming.  This is all we know how to do.

Thank you "Aunties" Laura and Megan for coming up and reminding us of his fighting spirit.

Tuesday June 8, 2004 Day +138

Today was about the same as yesterday with a couple of new events.  We changed his bed again.  They finally got it fixed so it inflates properly.  He looks very comfortable.  His sores actually look a tiny bit better.  He is still on a lot of respitory support and required a little more than Monday.  He is still fighting some sort of infection that nobody seems to know what it is.  His white blood cell count was 60,000 which is very high.  Typically its a sign of infection.  His PD is still going very well and the Renal doctors were very happy about the progress.

We had a close call in the morning.  Christopher's chest tube got clogged which caused his blood pressure to drop and his saturations to fall.  Once they cleared the chest tube things were much better.

Please keep praying for a miracle.  Christopher is on a lot of respitory support and his lungs are still very weak.  We can't lose our boy.  Its not his time.  He was put on this earth to do great things....

Monday June 7, 2004 Day +137

Nothing new to report today - our basic roller coaster of a day. The doctors had to give him medicine to keep paralyzed and sedated. Christopher's still moving around too much and disrupts the settings on the vent. His oxygen will be up, than down, up etc.... We get 50 million different opinions of his condition from 50 million doctors. We have decided not to listen to them anymore. Their are two doctors who we now run everything by, and we trust their opinions and guidance to get us through this maze. We've stopped asking for every lab number, x-ray result etc... It's too much of a roller coaster. A lab will be good one hour, we get excited, than the next hour it's down again.

Christopher's got awful bed sores and skin breakdown. Their has been a 3 day fiasco of getting him an air mattress bed to help with his sores. He  has them on his back and a HUGE awful one on his head about 4 inches long. They first got an adult bed but he kept sinking into the middle of the bed because he doesn't weigh much. We couldn't find him in the bed! We finally got a pediatric crib air mattress bed, that works somewhat.

Sorry not much more too report-we're sad and just hoping for a miracle.

Sunday June 6, 2004 Day +136

Christopher was responsive today and kicked his legs and arms some. He was also trying to "breath over" the ventilator,  and take breaths on his own. Because he was so active, his blood gas numbers were all over the place, and late tonight the doctors had to give him some sedation to get him to relax. Although he is fighting, his lungs still are not strong enough to work on their own, and we must still help them heal by keeping him a little calm. I was bummed we had to sedate him, because I haven't seen him this responsive in a week. However, he still squeezed my finger after they gave him the sedation to say "I'm still here Mama." So, it was basically a day of chasing blood gas numbers, and resetting dials on the vent. We were doing awesome this morning, than his numbers dropped a little by afternoon, than they went up, down...... A roller coaster.

Joe and I are tired and scared. We've been in the hospital 6 months, and know we have so much longer to go. I often say we "blinked" and there went a half year of our life. We can't eat, sleep, have any peace. We're not in our home, we don't have our dog, and we can't even work (OK, sorry for complaining, sometimes the stress is just incredible). We just need a miracle, Joe said maybe last week was our miracle and he made it through and is still fighting.

Thanks to Mr. Gai and Mrs. Pat, "Auntie" Christie and "Uncle" Steve for coming to visit today, and keeping our bellies full and our hearts warm.

Saturday June 5, 2004 Day +135

A day filled with love

Medically, we are still the same as yesterday. Christopher is hanging stable (but still critical) and has reached a plateau.

We had many visitors today, who provided an atmosphere of love and prayers for Christopher. One of the things I have felt most guilty about during his hospitalizations is I haven't been able to provide him with many things to smile about. His days are filled with machines, tests and medicines.  I believe he may have been smiling under all that tubing today, and showed us signs he wanted to "come back and play with us."

His hospital room was filled with his "Aunties" Becca, Mary Kate, Gina, his "Uncles" John F. and John L. , "Surrogate Grandma" Sheila, and Pastor Don. ("Auntie Walkup" came by yesterday on her lunch hour to give him a kiss). We will never be able to think our friends enough for coming up to be with us. Christopher had not been responding much and we were worried. Auntie Becca held one hand, and Auntie Mary Kate held the other and he started holding their fingers. When Auntie Gina kissed him on the head, his eyes fluttered and his legs moved. He was such a flirt before transplant, perhaps he was waiting till all the ladies were surrounding him and giving him kisses before he decided to move again.

As a  mother I rack my head everyday to try to heal Christopher. I believe as a mother, nurse, and patient  healing is a two fold process. One part is medicine, the other is the way we react to the situation.  The only thing I have control over in this situation is how I respond to what is around us. I work to create an atmosphere of love for him to heal. I am blessed to have friends who love him and give him kisses. I read him books, and play Disney music. Somewhere under all that tubing I pray he feels the angels of all the prayers that are being sent to him. I created this website to help save his life. Prayers work miracles, and the more prayers, the more powerful the love will be he feels. 

Friday June 4, 2004 Day +134 10 am

Nothing new to report -this is good! We are just hanging steady, still intubated. We have been able to come down to 50% on the amount of oxygen he is receiving (which means the ventilator is giving him 50% oxygen and he is making the other amount). We have also been able to cut back on the amount of nitric gas he is receiving (this is also blowing in his lungs to help keep them open). His blood gases aren't perfect, but they are holding steady, close to normal but not quite there yet. A blood gas gives a more accurate reading of the gases present in the blood (Carbon Dioxide and Oxygen). Christopher is still on the "mac daddy" ventilator, and probably will be for another day or so to allow him to heal. After his gases improve even more we will go back to the regular ventilator, than we can extubate from there (which is still a while off).

His liver ultrasound came back fine, no structural damage. His liver took a huge hit when he crashed, your liver numbers should be 50, and his was 9,000 (but we came down to 3,000 last night).

We are still fine tuning the Peritoneal Dialysis. Christopher is very swollen looking, but we are slowly getting the fluid off. We think we even found a drop of urine in his diaper!

The PICU here is incredible, they saved his life. However, it has gotten very sad. Almost every family we have met  had a child who has passed away. Joe and I have started allowing friends from home to come and visit. People have been asking for months what they can do for us.  We need you to remind us of the life we want to take Christopher back too, and you help keep us positive and focused!!!! Our friends bring us sunshine and hope and we that's what we need now more than ever!!!!

Thursday June 4, 2004 Day + 133 9 am

A flicker of life.....

Joe and I were becoming concerned yesterday because Christopher was not coming out of sedation. When he was intubated he was given paralytic medication, and they kept him paralyzed for about a day (when you intubate somebody you give them drugs that  paralyze them, and they kept him paralyzed on purpose for about a day). He was not really coming out of his paralysis state, and there was the possibility of brain damage in the back of all of our minds.

The hospital chaplain came up about 11:30 pm and we prayed for Christopher, and our friend Zoe who became an angel yesterday. We than did an anointing of the oil, I made a cross over Christopher's head, and Joe made one on his chest.  (Anointing of the oil signifies healing). I turned to the chaplain and said, "it's not his time." Joe gasped and said "Look!" Christopher moved his left hand and fingers.

Even though Christopher is still critical, still intubated on the "last resort" ventilator, I have to believe a flicker of life exists in him, and I am holding on to the little miracle he gave me yesterday.

As "Aunt Cassie" said yesterday when she visited, "This child is so stubborn."  Christopher's other "Auntie" Angie  believes he will grow up to be Hercules.

Wednesday June 3, 2004 Day +132 2:00 pm

Fight Christopher, Fight!!!!!!!!!!!!!!

We are still in critical condition, but making very small baby steps. His blood gases are still not in normal range, but getting very close (a blood gas measures the Carbon Dioxide, Oxygen and pH in your blood). We have been able to stop the epinephrine drips, he is maintaining his blood pressure on his own. Epinephrine constricts the blood vessels, and causes you to have a blood pressure. The  doctor told me the amount he was getting was considered an "arrest" dose. His heart was getting stimulated every two minutes by the epinephrine to keep going. This went on for hours on Monday, and they slowly weaned him off the last bit of epinephrine last night called phenepinephrine.

He's still on the oscillator vent, in addition to receiving nitrous gas to keep his lungs open. However, his oxygen saturations are getting better and they are trying to wean him off this onto a regular ventilator within a day or two. The peritoneal dialysis is going slowly, but for now it is working OK. Also, his liver function tests are very high. We are not sure if his liver got damaged from lack of blood flow on Monday. However, the doctors are not worried about this, the liver regenerates itself and can grow back what is lost.

Christopher is slowly coming out of the paralysis medicine. We hope, but don't think, he has any brain or neurological damage. We were still able to keep a blood pressure and keep oxygen to his brain.

The doctors still don't know what happened to cause him to arrest. His white blood cell count is 23,000, so his body is mounting a response against something (normal is 6,000-10,000). However, not bad for a 4 month old immature immune system to mount such a wonderful response!

We know we are still in a critical situation. At any minute he could arrest again. We are not out of the woods, and I still pray for a miracle. We still feel this little boy is meant to be here, and he is fighting. He is showing us he is trying to come back to us. Family and friends help us to maintain a 24 hour vigil at his bedside. We tell him we love him and come back to us. All I have left are hope and prayers and that is what I am clinging too.

We have received so many e-mails and want to thank everybody. I only leave the hospital to shower and write an update and apologize for not getting back to anybody. We love and appreciate them all. Hopefully soon I will be able to catch up.

Thank you to "Auntie Amanda and Uncle Craig" for visiting and bringing goodies last night. Our friends near and far give us hope and remind us to hold on.

Tuesday June 1, 2004 Day +131 8:00 pm

Christopher is making the slightest of improvements.  His dialysis is going well and so far no leaks.  He has gotten fluid overloaded from yesterdays debacle and they are going to slowly get it back off.  They have also made progress on weaning the oscillator settings slightly.  He is on almost no blood pressure medications at this point and is holding steady.

The doctors feel that Christopher is responding as good as they could have hoped to his treatments.  They are not sure what medication is doing the trick but one of them is killing the infection.  They hope to have him off the oscillator and onto the regular ventilator in the next day or so.  This would be huge step in the right direction.

Christopher is fighting and Paige and I are not going to give up until he does....

Tuesday June 1, 2004 Day +131 9:15 am

Christopher is still very sick, and very critical. He made tiny improvements overnight, but things could still change at any time. He's holding his own, and we have been able to take him off of some of his medications helping him to maintain his blood pressure. At one point yesterday the medications were the only thing giving him a blood pressure. He's still on the oscillator vent (basically your "last resort" ventilator). We have to start him back on dialysis today, and will start on peritoneal dialysis (dialysis through the tummy). Even though it has only been a week since surgery, we have to take the chance and try. If the peritoneal dialysis doesn't work we would have to go back to the dialysis machine. This wouldn't be good. The machine clots, breaks, and  causes electrolyte imbalances. The peritoneal dialysis HAS to work, we need a break.

Nobody knows why he crashed. All of his cultures for bacteria, virus, fungus, are still coming back negative and we can't find infection anywhere. He's on 6 antibiotics, and 2 antifungals (in addition to everything else) in case their is something lurking around we have not been able to find.

We still take life one minute at a time and hold our breath. Please, please keep praying for a miracle. Pray for his lungs to heal, his kidneys to work, and for him to keep fighting. I really don't think it is his time yet. We are 131 days post transplant, and have fought so hard and so long. He beat the battle against Hurlers, we can't loose him now.

I always sing Christopher a song about caterpillars turning into butterfly's .I found a necklace I wear around my neck that says " Just when the caterpillar thought the world was over, it became a butterfly."

He is still critical, and I am still fighting for a miracle. Please help us to fight.

We want to think our friends, family, and ministers who have come to stand by our side. People are always at his bedside and willing him to live. All we had to do was make a call yesterday, and everybody came. Some of his doctors who were off duty came in on their holiday  yesterday to help us out, thank you Dr. Williams and Dr. Kahler.

Monday May 31, 2004 Day +130 8pm

Christopher is still very sick but has somewhat stabilized.  He is on an oscillatory which is a type of ventilator keeping his lungs expanded and oxygen moving through.  His blood pressure is still very unstable and they have him on two medications to manage it.  They have lowered the settings on the vent and his dosage of blood pressure meds.  This is an optimistic sign that he is responding to the treatments today.

The doctors are almost certain he has an infection, mostly likely a fungal infection in his lungs and possibly his blood.  They are treating him with several different antibiotics and antifungals.  Now its a waiting game to see how he reacts.  There is no telling what lye's ahead for Christopher.  Please keep us in your prayers and hopefully our next update will be a good one.

Monday May 31, 2004 Day +130 2pm Memorial Day

Christopher may die. He is very, very sick. He was doing fine, than he crashed over night and his left lung collapsed. He went into respiratory distress, and has been on 3 different ventilators. His lungs are very bad. He has a heartrate, but it is only because of the medicines we are giving him.

The doctors gave us "the talk". This is the first time we truly have felt he might not make it. We need a Miracle. He is very close to death.

Saturday May 29, 2004 Day +128

By Joe:

Today was uneventful.  We like these kind of days.  Christopher was on Bi-Pap ventilation most of the day which is a face mask that blows are into his nose to keep his lungs expanded.  He is not a big fan of this but it prevents him from having to be intubated.  His lungs are still wet but from the CT scan yesterday and the x-rays. The chance of an infection or pneumonia is always  likely.  He had a very restful day and looks a little better than yesterday.  We had so many problems with the dialysis pump over night, and he accumulated fluid which seems to go straight for his lungs. The pump breaks down every few hours, he looses blood and the we have to wait hours to get the pump restarted. It's an awful cycle. The hope is over the next couple of days to get him dried out and his lungs to improve so he can get off respitory support.

These last couple of days have been very hard for both of us.  We are so emotionally tired and watching him lay there and whimper breaks our hearts.  He is so uncomfortable with this breathing mask on and I hope each day that his lungs will get better so he can breath freely again.  The dialysis pump is a blessing and a nightmare.  When it works its wonderful but when it breaks down we lose any ground we gained.  I know Christopher is strong and continues to fight.  We just want him to heal and be a little boy.  He has spent more than half his life in the hospital and we know that this is all he knows.  He probably doesn't remember what home is and may not see it for another couple of month's.  Each day we search for the energy to keep going, we know we have to because he is still fighting.  The sadness is becoming overwhelming and we want so much to just take him home.  We ask God each day to give us the strength to get through another day.

One of the hardest parts of this phase of Christopher's journey is leaving him in the PICU.  We know that we need rest but we feel guilty leaving him. (We are not allowed to spend the night)  We stay with him all day and late into the night.  We get up as early as we can muster and start again.  We feel so guilty going home at night to sleep. Sometimes we will sleep on the bench's or chair's in the waiting room, Paige has even slept on the floor when he had surgery.  My heart is in my stomach every time the phone rings at the Children's House.  We are waiting for that emergent phone call.  When we walk in the room in the morning we are not sure what we are going to find.  Sometimes he is exactly as we left him, other times he is on a new type of breathing apparatus, the dialysis pump broke, he has a fever, etc. 

Somehow we must go on, for no other reason than our son keeps fighting.  He is to young to know any different and everything he does is based on the simplest of human instincts.  Pain, hunger, cold, hot, tired, angry, etc.  We know that he is to young to feel emotion or at least that's what we tell ourselves.  This is the only thing that comforts us when we leave our baby alone at night in the PICU.  From what we understand Fairfax hospital lets you stay in the PICU at night.  I can only hope so....

Thursday May 27, 2004 Day +126

A melancholy day. Christopher slept all day which he NEVER does. When I asked to review his records last night I found he had been getting pain medicine all night at a high dose (which I was not aware of) and he was pretty much zonked. We are very worried because one of our friends during transplant is very sick. I don't know if she will make it.

I've been doing a lot of thinking lately....... I think about life, death, why people suffer emotionally and physically. Why children hurt, what is really going on in this world. So, I have added a whole new section to "Inspirations and Hope." Just some thoughts and experiences. I hope they give strength to others out there in pain. Please click on "Inspirations and Hope" (or Lucy) for:

Praying over Nail Polish

Many thanks to "Aunties Jen and Saundra" for coming up and making me smile again!!!!! The wine and good food made me smile too!!! :)

Wednesday May 26, 2004 Day +125

Not a lot of information to report, we are just back on CVVH dialysis. Christopher is hanging out and sleeps some. Their is a lot of noise in the ICU so it's hard for him to rest. The dialysis pump broke today, and he was off the pump for about 12 hours, but did OK. When he got back on the pump he got very cold and we had to use warming blankets, he also started throwing up some.

The PICU at Fairfax said they can take us next Wednesday! Please pray this happens, we have got to get closer to home. Due to the Memorial Day Holiday, there are staffing issues so we can't get there until than.

I'm working on adding more to my "Inspirations page" and will hopefully have it up soon.

Tuesday May 25, 2004 Day +124

Emergency surgery late last night, a setback that will keep us in the hospital

We had to go for emergency surgery late last night about 11pm, they had to call the OR staff in from home. Christopher had been fine all day, hanging in his crib watching cartoons.  He's also on Methadone right now to help with his withdrawal from the narcotics he was on-so he was very chilled.

About 8:30 I noticed blood on his favorite blanket, and the nurse and I went to pick him up to change his bed.  We saw a huge amount of blood coming from somewhere, and immediately thought his peritoneal dialysis catheter sight was leaking, when we went to check it, the site was fine.  As many of you may remember Christopher had a laparotomy (tummy surgery) about 4-5 weeks ago for a liver biopsy and had about a 3 inch scar. Well somehow his internal stitches popped from the surgery, so the external stitches (scar) popped open, and you could see all the way down to his liver.  Blood was coming out everywhere.  So I started screaming and almost passed out (trust me seeing your infant laying in bed watching cartoons with a huge hole in the side you can see into is pretty traumatizing).

The surgeon came in, and we had no idea how his stitches popped internally. It could be because of the peritoneal fluid in his tummy, and the steroids he was on (steroids cause lack of healing). He had scarred wonderfully.  I had been looking at it that afternoon and it was a beautiful scar.  When he went into surgery the doctor used a very heavy suture that will not absorb and said he could see where all the original sutures had just popped.  The whole thing is very weird, and just floored everybody including the doctors.

However, in the course of doing this we can no longer do peritoneal dialysis, because the fluid would go into the tummy and not allow it to heal.  So the doctor had to put in another femoral line and Christopher had to go back onto the CVVHD  machine dialysis. He'll be strapped to the machine again 24 hours a day.  We can't try peritoneal dialysis for another 2-3 weeks until he heals.  Christopher had to be reintubated and back on the ventilator, he was extubated this afternoon with no problems.

This puts us in the hospital for at least another 6-8 weeks.

Despite all this, he is still fighting so hard. His blood counts looked better today and  his lungs are doing good.  His kidneys just still aren't working adequately. (The bad part about going back on CVVHD is he won't make as much urine, and he had just started making a few drops).  When he was sleeping today, he was holding onto the ventilator tubing, and still tries to extubate himself.  Because this is a huge setback, the PICU doctors are working very hard to get us transferred to the:

PICU at Fairfax! This will happen in a few days!

Joe and I are so tired, mentally, physically, and emotionally. The things we've been through, seen and have had to make decisions on are almost too much to handle sometimes.  I can't even remember how many times we have been to surgery.  We've been in the hospital almost 6 months straight, and are now facing another 6-8 weeks of hospitalization. Christopher is still fighting, so Joe and I must still fight.  We need to be home, and around our friends who give us inspiration to fight.  For all of our friends who have asked what they can do to help us, we need you now!  Just help us to keep smiling, and keep fighting.

Sunday May 23, 2004 Day +122

Still in ICU, but we have less tubes.

We are still in ICU, but they have taken out Christopher's femoral line in his leg, and arterial line in his arm. The tubes we have left are: naso-gastric and naso-duodenal, peritoneal dialysis tube, and a central line. He is still on a nasal cannula that is giving him oxygen (a nasal cannula is the tubing they put in your nose to blow oxygen in).

We are spacing his dialysis apart, and we are going up to 3 hours today. We were having to do peritoneal dialysis every 1 hour, but the doctors are starting to space it to doing it every 3 hours. We will eventually work to doing it to every 6 hours. Christopher's blood pressure has increased again so we have put him back on blood pressure medicine.

We will be transferred to Fairfax Hospital PICU via ambulance by mid week! Fairfax Hospital is where I work and about 15 minutes from home. Yippeee!! We will be one step closer to bringing him home to our house.

Thank you for the prayers for our friend baby Brady. He is 3 weeks old, and got a liver transplant on Saturday! Please pray for our friend Dustin who is  to undergo extensive testing tomorrow to find out if his chemo is working, and all sick children battling to overcome diseases.

Friday May 21, 2004 Day +120

We have urine....just a little

Christopher urinated the slightest amount today, just a few drops.  We will take every drop.  This is a sign that his kidneys may be coming back to life, we will not know for a long time.  Keep your fingers crossed.  Christopher had his hemodialysis catheter taken out of his leg this afternoon after receiving a platelets pick me up.  One less foreign object in his body.  Tomorrow we are going to work on getting the arterial line taken out of his arm.  His Peritoneal Dialysis is going very well.  They have bumped it up to every two hours.  Once they get it to every three they feel we should be able to leave the PICU.  What this means to us is a trip to Fairfax hospital in an ambulance.  We may be coming home this week!

We had a little scare this afternoon.  Christopher has been very uncomfortable the last 48 hours.  He was stiffening his legs, his eyes kept rolling back in his head and he was shivering.  We went down for a CT scan to check for a blood clot or stroke.  All clear.  It seems that Christopher was taken off his pain medications to quick and was having withdrawal symptoms.  He was given a dose of pain medicine and he started to come around.  Hopefully we can wean him a little slower and not cause this anymore.

I got to hold my boy for the first time in three weeks today.  He hadn't slept in two days and as soon as I picked him up he fell right to sleep.  I held him as long as they would let me, about 15 minutes.  What a wonderful feeling.

Thanks grand dad Lin for coming up and spending the day with me and taking me to lunch. Thanks also to Mr. Gai for coming to see Paige this week.

Say a special prayer for friends of ours at the Children's House.  They are waiting for a liver to transplant their 3 week old boy Brady.  One was being tested when I left the hospital at midnight for a possible match.

Thursday May 20, 2004 Day +119

Christopher was extubated and came of the ventilator about 10am yesterday morning. Yeah! We had him on a face mask with oxygen blowing into his face, and he retained his oxygen saturations close to 100%. He keeps trying to "help the nurses" by removing his mask or sticking it in his eyes so we have to watch him closely. I've never seen his eyes more open or alert, he follows everyone around the room. It's like when he was an infant, and the first time he kicked his legs or noticed I was his mom, I feel the same type of excitement. We have gone back in time and started all over again. He is very thin and down to only 15 pounds. He looks so fragile, I'm scared I might break him.

He's doing good on the peritoneal dialysis, and the doctors may stop the hemodialysis today. We would probably leave the hemodialysis shunt in his leg for a day or two to make sure everything is OK, than we could remove it. And than we could hold him! I still haven't been able to hold him in two and a half weeks.

I think (hope/pray) we may be a family again. I have had many days/weeks when I was scared we wouldn't be bringing him home.

For all the wonderful people out there praying for us, thank you. Please continue to keep us in your thoughts and prayers. Please pray Christopher will continue to fight and remain strong. Please pray his kidneys will one day recover. They are still not working, and are on hiatus.  The doctors can't tell us when or if he will ever regain kidney function. He could  be on peritoneal dialysis for years if his kidneys don't start working again. I can't even imagine the idea of a kidney transplant in the future.

Tuesday May 18, 2004 Day +117

Sorry for no update yesterday, it was a crazy day.

Christopher is doing good today, and will probably be extubated tonight. Yeah! We need things to start heading in the right direction. We still have to be very careful with his lungs, they took a beating and their is always the chance he would have to be reintubated if his lungs aren't healing the way they should be.

We started peritoneal dialysis yesterday, however we are still doing CVVH dialysis for a few days to make sure the peritoneal dialysis is working well. The renal docs are happy with his progress on the peritoneal dialysis. He is still getting food down his naso-duodenal tube, and we are switching to a new type of formula.

Christopher kicked his legs today! I couldn't believe it, I haven't seen him kick or move his legs in probably 6 weeks, I almost started crying. He was kicking his legs with a legboard on his right leg. (They had to put a board on his right leg to keep the catheter protected for dialysis). The board had no effect on him, he was picking his legs up and throwing them down, and this is after they had given him sedation! He also managed (with restraints on) to somehow disconnect his  breathing tube from the ventilator. I almost feel like it is a miracle, seeing him kick his legs, and watching his eyes. His eyes are open all the time now and he watches everyone in the room. Such a simple thing, Christopher moving his legs, it makes me feel like I won a million dollars.

Many thanks to Dedra for coming up to visit yesterday and helping me keep my sanity during a stressful day.

Sunday May 16, 2004 Day +115

Christopher is still on the vent, and we had to go up on the amount of oxygen we were giving him. The ironic thing is his blood pressures have never been better! We have taken him off of all his blood pressure medications, except for his blood pressure patch on his back. Huge improvement! His pressures have come down by almost 100 points.

The doctors have a naso-duodenal tube down his nose (it's a tube that goes from his nose, down his stomach into his duodenum, which is the beginning part of the intestines). They are giving him his formula, Alimentum through this.

We will start the journey to peritoneal dialysis tomorrow. It will take a few days to switch over from CVVH dialysis to peritoneal. I haven't been able to hold him for two weeks, and my arms ache.

Christopher is so mad, and fights his endotracheal tube all the time. He broke out of his restraints, I was so proud! (His arms are restrained so he won't pull his tubes out). He has had so much anesthesia, any sedative he gets has very little effect on him.

Saturday May 15, 2004 Day +114 11pm

Christopher has made progress today.  He is still intubated but they were able to reduce his Oxygen requirement from 100% to 50%.  The doctors have also been able to reduce the pressures needed to keep his lungs expanded.  These changes mean that Christopher's lungs are doing better and are able to support him with less help.  His X-ray from tonight has also shown less infiltrate (More black on the x-ray instead of gray!).  They are thinking that maybe he doesn't have pneumonia.  So he's on lots of antibiotics and an antifungal just in case.

He was taken of off his Total Parental Nutrition (TPN) because his electrolytes were all out of whack.  Instead, he has a new feeding tube that goes directly into his intestines.  This will prevent him from aspirating anything from his stomach into his lungs.  Back on Alimentum.  He desperately needs nutrition.  We were so happy about this.  Any food he gets can help build up his strength.

Christopher is such a strong boy.  He is fighting so hard.  We still see the twinkle in his eye when he gets fired up and tries to pull out the tubes.  Keep us in your prayers.

Thanks Buddy for coming up today.  You are a blessing to our family.  Thanks to the grandparents too.  You help keep us grounded.

Saturday May 15, 2004 Day +114 8am

Christopher was reintubated and put back on the ventilator last night about 1 am. He was having problems breathing, and may have developed a slight case of pneumonia.

I'm speechless.......

Friday May 14, 2004 continued 7pm

We tried taking Christopher off of Bi PAP today, and we were only able to do it for a few hours before putting him back on. The oxygen concentration in his blood dropped too low with a regular face mask. The Bi PAP pushes air into his lungs, and is a small form of a ventilator. Right now we are trying very hard not to have to reintubate him. He has also developed a small case of pneumonia, and is on more antibiotics.

His adenovirus cultures came back negative again for a second week in a row, however we still have to give him the medicine to make sure their is no virus lurking around hiding. His nasogastric tube got stopped up and we had to put another one in. Ugggghhh!!! He hates NG tubes, and I hate them having to put one in.

He still whimpers with the Bi PAP mask on, and we just try to keep him soothed by rubbing his head. It's this big contraption that goes across his face, I think I would whimper too.

Friday May 14, 2004 Day +113 12:30 am

Christopher is still on an oxygen machine they call bi PAP (positive airway pressure), and we are still trying to avoid having to reintubate him. This oxygen machine pushes air into his lungs, and is a huge mask that sits on his face. About every hour or so he'll wake up, realizes it is there and lets out this little cry and moan. His oxygen lab numbers began looking better during the day, however there is still fluid in the lungs.  So, we just pray this continues to helps his lungs heal again and he won't have to be reintubated. Maybe sometime late tomorrow they can switch over to a regular oxygen face mask, it's still an hour by hour event. He seems so scared sometimes, I just pray he feels all the love of all the people praying for him and this brings him comfort.

The doctors think he may have aspirated (gotten some stomach contents or formula in his lungs) so we are throwing in another antibiotic to the mix.

As of 12:30 am today we have 16, 012 hits on this website. I am so overwhelmed. Thank you!

Thursday May 13, 2004 Day +112 1 pm

Prayers Needed

Christopher's dialysis machine clotted during the night, and was off for about 6 hours (it runs for 24 hours a day straight). Consequently, fluid collected in his lungs and he has been having a hard time breathing. We are skirting the edge of him having to be reintubated. They have him on a special oxygen face mask that is beginning to help open his lungs up some.

OK, I hate this disease. I hate what all diseases do to children. If we had done nothing, Christopher would have been in pain (remember- Hurler's causes multiple organ failure and death if left untreated), by trying to save his life we are having to cause him pain. Joe and I are constantly torn up by the treatments we have to put him through to try to save his life. Their is no justice with this disease, whatever course one takes is guaranteed to cause pain.

Wednesday May 12, 2004 Day +111

Still hanging in ICU

Non eventful day-hanging out in the ICU waiting for Christopher's Catheter to heal. He looks like he is in not as much pain, but he looks very sad. Just seeing him lay there, so thin, unable to move, his eyes just look so sad. It breaks our heart so much.

The one surprise of the day that caught everyone off guard was Christopher has GVHD of the skin again stage 2. We had taken a skin biopsy the other day, but the oncologists and the dermatologists both thought his skin was getting better. We will have to stay on the high dose steroids for a while longer.

Much love and thanks for Cassie for kidnapping me and making me drink cosmopolitans and go shopping. I love you, thanks for helping me feel normal and alive again for a few hours!

Coming soon....... Information about the organizations Paige and Joe are starting to help children in the hospital.

Tuesday May 11, 2004 Day +110

We went to surgery today, AGAIN, and had a peritoneal dialysis catheter placed in Christopher's tummy. No matter how many times I take him to surgery it never gets easier. Anyway, he came through with flying colors, the anesthesia docs said he was much stronger than they expected. He had to be reintubated for the surgery, and everyone was expecting to extubate him in the PICU. He was strong enough they could extubate him in the OR. That's my boy!

I want to thank OR nurse M.H. for taking such good care of Christopher, and making me proud to be an Operating Room Nurse. I also want to thank nurses Jen and Alicia who came and sat with me during surgery. I was very upset Christopher was in surgery, and sad he would have more scars all over his precious little body, unfortunately I was flying solo today and was by myself. Because we have been here 6 months, Joe and Mom have used up a lot of their sick leave. We also know there are many more days of hospitalizations to come. Going to surgery has also become like going to the dentist it has gotten to be so common.

 They held my hand and instead of crying tears of sadness, made me cry tears of laughter. As Alicia reminded me, he could always get a tatoo of the Virginia Tech Hokie Bird over the scars, or make up a cool story on how he got them. (As long as it is not a tatoo of the UVA Cavalier, I think I would be OK with this). You guys were my guardian angels today and I will never forget you! By the time I looked at my watch again, and hour and a half had passed and the surgeon was walking out to talk to me.

We had to put a nasogastric tube back in him tonight. He was throwing up green stomach bile, and we didn't want him to aspirate anything into his lungs. NG tubes are a bummer, because they are very uncomfortable (the tube is in your nose, throat and down to your stomach), and I know causes him distress. He's in so much pain and so uncomfortable, I just want him not to be in pain right now. He is still on pain med and they give more as needed. He opens his mouth and tries to either cry at me or scream at me, but all that comes out is a little gasp. I think his throat will hurt for a while.

We will stay on the CVVD (dialysis) that we are on now for a while until the catheter in his stomach heals. Christopher will still be hooked to the big dialysis machine that runs 24 hours a day until the weekend. After this we can use the peritoneal catheter and it will be a little easier to do.

Monday May 10, 2004 Day +109

Extubated for a few hours!

Christopher's chest x-ray was clear today so we got to extubate and take him off the ventilator around 5pm. However, he has to go back to surgery tomorrow for a peritoneal dialysis catheter and will probably have to be reintubated for a few hours. He will stay on his CVVD dialysis for the next few days until the peritoneal catheter heals and he can start using it. We also got to remove his nasogastric tube, but it may have to be put back in for a few hours tomorrow during surgery. At least he can have a few hours of relief. His throat hurts him a lot, he looks at me and tries to cry and nothing but this little raspy whisper comes out.

I have to say, I am very excited to be extubated today, but I was also a little sad today. Christopher looked at me with the saddest blue eyes. He has my grandpa's eyes, and they are so deep blue, they reach you to your core. However, my "Papa" is one of my hero's in life, and is truly God's angel sent to earth.  Perhaps this is why Christopher has his eyes. Christopher has shown me God's presence, and has truly become my hero. Whenever I look at him, I see my grandpa with all his courage looking back at me.

 Some people say 1 year old's can't feel emotion, but I believe they can. I feel so helpless sometimes. I just spend the day stroking his head, doing my own version of physical therapy on his arms and legs, talking to him about his dog, and telling him how much he is loved. I hope somehow he understands this and it gives him comfort.

Now, if we could only get him to urinate life would be so much better. This is the little boy that had the reputation of "sharp shooter" on the floor. He would hit the walls, your eye, whatever was near, didn't matter. Sometimes I can't believe he has gone into kidney failure on top of everything else and still has more pain to endure. However, despite this, I do feel we are turning a corner and can be transferred closer to home soon. Maybe his kidneys just needed to rest, they have been working over time. Please just keep those prayers coming, they really, truly are working in our lives. Their is so much more I want to add to this site, and hopefully soon I can catch up and share some amazing stories that have happened along our journey.

Thank you to everyone, from the bottom of our hearts for all your love. We are truly blessed. Thank you for all the cards and e-mails, I have received so many wonderful sentiments of support, and am trying hard to catch up on e-mails. Many thanks and love to "Aunties" Cassie and Angie for my beautiful flowers, they made me cry!

Sunday May 9, 2004 Day +108 Mother's Day

Still intubated, on a ventilator and on dialysis

Christopher gave me the best give ever for mother's day, a clear chest x-ray. His lungs look good, and the fluid seems to be gone. The size of his heart has even decreased. However, we still have to keep him intubated because he has to go to surgery on Tuesday for a new Peritoneal Dialysis catheter. His pain meds, and medications they are using for sedation aren't lasting long, and they are giving him more. I think he wants his tube OUT and is fighting it hard.

He was having some electrolyte imbalances today, so they are changing around the way the dialysis machine works and what it pulls off. Besides all of that, we just sit and wait and hope he starts making more urine. He is making some, and hopefully it will increase over time.

We want to thank with all our heart our friends who gave up their Mother's Day to be with us today. Pastor Don, "Auntie LaLa,", "Uncle Marc", & "Aunt Corey". You gave me a wonderful gift today by seeing your faces and holding your hand!

Saturday May 8, 2004 Day +107 11am

Christopher is doing as good as one can for being intubated and on dialysis. They have pulled off a ton of fluid, and he is looking more normal again. His whole body has atrophied, and Joe and I try to do range of motion activities with his limbs to keep his muscles moving.

His chest x-ray cleared up much quicker than expected, and his lungs are looking good, however, he will probably still have to be intubated another week. We now have to switch over to another form of dialysis called peritoneal dialysis. We will go to surgery and they will put a new catheter in his tummy so we can do dialysis through his tummy (right now we have a line in his femoral artery in his leg). I'll try to post more on the different types of dialysis later.

The only bummer with this, is it takes 4-5 days for the catheter to heal so we have to stay on the CVVD (continous venous-veno dialysis) that we are on during that time. Christopher has to keep his leg completely still, and you can't tell a one year old not to move. It's a bummer he will have to stay intubated so long, with his lungs looking so good, but we have to do it until the Peritoneal Catheter heals. Hopefully we can go into surgery Monday or Tuesday and he can be extubated (breathing off the ventilator and on his own) by the end of next week.

His skin looks a little GVHD flaring, so we are putting him on some extra medications. We have stopped the TPN nutrition, and are putting Alimentum (formula) down his nasogastric tube. We feel good about this since it will help keep his gut moving.

Thursday May 6, 2004 cont. 11:30pm

Negative, Negative and Inconclusive.....

Good news late tonight at 10:30. After asking the doctors all day long about the adenovirus tests, being told that the lab closed and never called, our night nurse happened to mention in passing that his test for adenovirus came back negative....  The Virology lab called back after checking messages the resident had left, and at 7pm told the resident that Christopher's blood and urine adenovirus tests came back negative.  His lung test was somewhat inconclusive because the culture came back changed but not negative or positive.  So the doctors are taking this as a negative at this point..... They will rerun the test next week to double check, he will probably have a bronchoscopy to gather deeper lung specimen and gather more cells. The doctors will decide tomorrow if he will get more Cidofivir (anti-viral medicine to treat the adenovirus) as an extra dose. Cidofivir is hard on the kidneys, but the dialysis machine may help with the treatment.

So we continue on the same track.  Dialysis 24 hours a day until his kidney's get better (probably another 5 days) and a breathing tube until his lungs dry out. He is still intubated and on the ventilator. The doctors took him off of some of his medicines and he is not paralyzed anymore. He is on a constant pain drip that is keeping him sedated so he won't pull his tube out.  He was started yesterday on Total Parental Nutrition (IV nutrients) and is getting a little Pedialyte through his NG tube to get his stomach working again. He is still very critical, but we literally take every hour as a goal.

Paige and I are not sure how to thank you all for your thoughts and prayers.  We have been overwhelmed by the thousands of people praying for our baby.  God has listened and offered up a negative adeno test.  Please know how thankful we are to everyone.  Special thanks to the grandparents and surrogate grandparents (The Millers and Garrets) for your encouragement and support this week.   Thank you Becky for the dinners, CUMC for keeping our stomachs full and our hearts lifted, friends for always reminding us that you are there, the JH Genetics team and PCRU nurses for always being positive and keeping us motivated.  And for the countless folks who have prayed for us that we will never know.  Thank you for being our angels. Please keep praying for us, we have so much longer to go, and you are helping to save his life.

Thursday May 6, 2004 Day +105 - 12noon

Christopher is having another good day.  So far no results on the adnovirus test.  He is on 45% oxygen and they have lowered his respirations on the ventilator to allow him to breath some on his own.  He has lost a bunch more weight over night and is about half way to his fighting weight (9.5 kilo's, he is at about 10.25 kilo's).  His swelling is getting better by the hour.  He is also becoming a little more alert and opens his eyes when he hears our voices.  They are keeping him sedated still so he won't fight the breathing tube.

We want to thank everyone from CUMC for the prayer vigil last night.  All your prayers as well as the prayers from all our friends and family are working.  God is answering our prayers by giving the doctors the wisdom to treat Christopher.  He is such a strong boy and we are so proud of him.  He is getting better every hour.  Thank you all for what you have done for us.  Keep praying today.  We should have the results of the adnovirus tests this afternoon.

Wednesday May 5, 2004 Day +104

Christopher is still intubated and hooked up to the ventilator that is helping him breath. He is able to breath on his own some, and the doctors have him only on 50% oxygen, however he is still maintaining his oxygen saturation at 100%. This means he is breathing a little on his own, and the machine is doing the other half. His lungs look bad so this will help him to rest. Whenever someone has a breathing tube in they have to be deeply sedated, and sometimes paralyzed. He will still hold a finger and won't let go. He opened his eyes a few times and would than close them. Aunt Lindsay and I were having a "discussion" across his crib and he opened his eyes, looked at us both, and shut them again. I think he was trying to say will you two sisters please get a grip and stop fussing after all these years!

After a lot of problems getting dialysis started, it fully got cranking about 6am this morning. There were a lot of problems over night, and they had to stop and restart the machine. The nurses also had to fix his line again. They are able to pull off fluid, and have been able to start pulling off more fluid as the day progressed because he could handle it. The machine will run 24 hours a day for the next 7-10 days, and he may be intubated the whole time. No one knows, we take it one hour at a time. He had a few drops of urine today, but I will take every drop I can get.

He is still very critical, but I feel we made a start today with the dialysis. We will get the adenovirus results back probably tomorrow.

We want to thank with all our heart our wonderful church family who arranged a prayer time for Christopher tonight at Centreville United Methodist Church. Thank you Corey,  for setting this up. We want to tell the New Covenant Class, we truly love each and every one of you, God has put you in our lives and you will never leave. To our amazing ministers, you make the long drive Hopkins multiple times a week and help us hold on. When our minister Samantha walked to his crib today, Christopher opened his eyes and looked at her. I believe he felt the presence and love of prayers.

Thank you to Aunt Linz and Uncle Brad for puppy sitting.

To our readers and friends:

You give us strength, hope and courage. Without hope their is nothing. The e-mails we have received are incredible and melt my heart. Joe and I cherish each and every word of encouragement, and it is what keeps us going.

Tuesday May 4, 2004 contd. 10:47 pm

Today was a very long day and we had the following done:

1. Intubated (the tube had to be readjusted several times throughout the day). He is now on a ventilator that is breathing for him.

2. He has a foley catheter to collect urine, and a nasogastric tube that runs from his nose to his tummy to help suction his tummy and give meds.

3. An arterial line put in his left arm that gives a constant read out of his blood pressures.

4. A trip to the OR for a shunt to start dialysis. The shunt did not start when the doctors went to hook him up to dialysis, so they had to put another one in. This one still didn't work, so surgery came again and after the third shunt they got dialysis to start. The shunt is in his right femoral artery (the top of his right leg). We got dialysis started about 9pm tonight.

The doctors continually do blood draws and monitor his blood gases, lab values, etc... He has at least one nurse, sometimes two. His lung x-rays still don't look good. The one positive thing to end the day on is he was trying to pull out his breathing tube. I feel this means he is trying to fight.

We want to thank all the wonderful people who e-mail and call us. You have no idea how grateful we are for your love and support. Thank you for praying us. Sometimes my faith flounders and I wonder where is God? An innocent baby struggling so hard to survive and we don't know what his outcome will be. The support we receive from people gives us the strength to put one foot in front of the other. We are blessed to receive so many wonderful , heartfelt messages of support. Please keep us in your heart and continue to pray for Christopher. The only thing I know to do to help save him is to pray.                              

Tuesday May 4, 2004 Day +103

Christopher is very, very sick.

We had to intubate Christopher today and he is on a ventilator. We are waiting to go to surgery to have a shunt inserted so he can start dialysis as soon as possible. He is very sick. I am going to be honest, we don't know if he will survive. One of his x-rays looked different today than the rest of his x-rays. The doctors don't know if he has adenovirus that has spread to the lungs. If he has adenovirus in the lungs, there is not much left for us to do, and we will have to make to make decisions.

The doctors have him sedated because of the breathing tube, however, he will grasp my finger.

Please, please keep praying for us. He is very critical. We won't get the results of the adenovirus from the lungs back until Thursday. If it is negative, he may or may not be able to handle the dialysis. His lungs have also taken a bad beating. If he requires long term care in the PICU we have asked to be taken to Fairfax so we can be closer to home. I believe they can provide the same level of care, it's just a point of them accepting us. I feel we need to be close to our church, our friends and our family. We will know better by the end of the week.

Pray the adenovirus culture comes back negative in his lungs. Please, we love this child so much. I truly in my heart don't believe he is ready to go to heaven yet and is meant to live a life here. I can't imagine my life without him.

Monday May 3, 2004  Day +102

Please, Please, Pray for us. Christopher is very critical.

We are in the process of being transferred to PICU. Christopher may need to start dialysis, the doctors will decide when we get to PICU. He is retaining a lot of fluid, and is not urinating it out. The doctors have been giving him diuretics all weekend to help him urinate, but he isn't urinating at all. We don't know if his kidneys are shutting down, or if this is just a temporary thing. If he has to start dialysis, surgery would come up and put another line in him. The only positive thing we have going for us right now is his blood pressures have come down, his counts are up, and his electrolytes are in balance. He has been having a lot of pain and we are giving him intermittent pain medicine.

We are so scared about possibly having to start dialysis. Please pray for a miracle for his kidneys to heal, we are desperate for a miracle.

Saturday May 1, 2004 Day +100

Day 100!!!!!!!!!!!!

Christopher's counts have come back up, and his WBC is 7,000 and ANC 6,000. Thank goodness! We have slowly been giving him blood over the past few days which has helped his Red Blood Cells come back up, however his platelets are still very low. His platelets are 11, normal range starts at 150, so he has lots of bruises.

The adenovirus is the main concern of the doctors now since it has traveled to the blood. We had to give him medicine yesterday which required a lot of fluids, so once again he is blown up like a balloon and has a ton of swelling. The doctors are giving him diuretics to try to get the fluid off, but it's not working well.

Christopher had also been screaming in pain and we went to get an ultrasound yesterday which showed ascites in the stomach. Ascites is extra fluid in the stomach. His tummy is absolutely huge. The extra fluid has caused his blood pressures to rise again, and he is getting extra medicines. If it keeps up too long, we may end up back in the ICU. We don't know what to do. We get one thing resolved, and the next day it is a new crisis. It is like this everyday, it feels there is never a good day. We are stuck in the "hospital spiral" that causes you to go downward in a hurry.

Joe and I feel like we are drowning. The pain can sometimes be suffocating. To watch a child live with a chronic illness, it feels like a million knives stuck in us. Actually, I think the knives would be less painful. I hope, and continue to pray we will somehow get past this. I worry because I feel he is not leading a healthy quality of life right now. Maybe this will bring him a quality of life one day. The folks from University of Minn. (the "Big" Hurler's treatment place) have contacted Dr. Kahler about his enzyme therapy experience with Christopher. As my husband, who was calming me down tonight from crying, reminded me maybe somehow our experience will help other children with Hurler's out there. Who knows? Or maybe this pain is what parenthood is all about. Without pain, you can't have beauty and this little boy has taught us all about beauty. I think about the poem on our "Inspirations and Hope" page, "Welcome to Holland". It reminds me to try to find beauty in this chaos.

Thursday April 29, 2004 Day +98

Christopher's counts are very, very bad. His white blood cells have crashed down to about 1,000. His platelets and Red Blood cell's are also very low. He will be getting blood very slowly tonight. I walked in this morning and just about died when I saw his counts. I prayed we needed a miracle, than the doctors came in and said they think one of the new medicines we put him on had caused his counts to plummet. They are working on finding us a new blood pressure medicine. We also went over to cardiology to have an echo done, which shows the pericardial effusion around his heart has decreased (the fluid has decreased around his heart).

We would like to thank Samantha, Gai, and Don from church who visit us.

We want to thank our readers for your continued support. We need a MIRACLE to get Christopher home at this point. I simply don't know what to do. It is a new hurdle every day. We see small goals being accomplished, but our big goal of getting him over this Hemolytic Uremic Syndrome will be critical. Please, please, continue to keep us in your prayers. Please pray for a miracle to heal his little body.

Wednesday April 28, 2004 Day +97

Just another day of hanging out in the hospital. Christopher's counts are down and his creatinine (kidney function we want to be low) is up. Since his blood counts numbers are low, it means we are waiting for the Hemolytic Uremic Syndrome to still resolve. We did get to cut down on his steroids some more today, which may help his blood pressure. However, his skin is having a GVHD flare and is red again, so we have started him on another IV form of immunosuppresant. We are now giving him IV Cellcept, which we were giving him orally (we took him off of it because we thought it was making him sick).

He drank 16 ounces today! 8 ounces of Pedialyte, 8 ounces of Alimentum! Huge accomplishment. He will only drink one sip at a time, but that's OK because it eventually goes down. Also, Dr. Kahler our geneticist says Christopher is now "sleeping like a baby". His breathing sounds so much better, you can't even hear it! One of the early indicators of Hurler's was his breathing. He sounded like an old man with a sinus infection, snoring, whenever he breathed. This was all related to his trachea and nasal passages.

Most of his swelling has gone down. He looked very pale and gray today, and his arms looked atrophied, with no muscle tone. It broke my heart. When he gets home, it's sunshine all the time! Joe and I were talking today that we have to go back in time about 5 months and pick up where we left off, but it will be harder this time. We all need to get home very bad. Christopher needs to be a baby, and we need to return to living. The days seem to have gotten longer and harder, and we know we are still climbing a mountain. However, we know this sacrifice is what will give him a life to lead.

Tuesday April 27, 2004 Day +96

Sorry it has taken me a while to update. With Christopher in the PICU I didn't have access to my computer.  I am also very sick and am in that "haze" you get when you are so sick you can't hold your head up. Anyway, enough complaining, we are out of PICU, we moved this afternoon. The doctors wanted to move him yesterday, but I didn't feel comfortable with him being moved, his blood pressures were still unstable. They remained unstable all day yesterday, and required a lot of medication. Today they looked good enough to go to the floor.

The main things we will be watching our his kidney functions, and blood counts. All specimens we sent to test for the HUS came back as negative, however the doctors are putting him on a strong anti-fungal medicine. A lot of post transplants patients have problems with fungus, that simply does not show up on any tests. We all have fungus in our bodies, it's a natural thing. However, most people have a strong enough immune system to fight the fungus and keep it under raps. However, immunosuppressed patients have to be careful since their immune system is so fragile, and not let the fungus take control of their body.

We also have to really watch his kidney function. His Creatine (measure of kidney function) is coming back very high. It should be about 0.2-0.3, his is at 0.9. They have taken a beating. Also, Christopher has now tested positive for adenovirus (cold virus) in his blood and has to get a medicine called Cidofivir that can cause more damage. So, one day at a time, and I pray once we get his medicines straight, his kidneys can heal. 

Sunday April 25, 2004 Day +94

Still hanging out in the ICU

Christopher's blood pressures were still high all day. They are giving him many diuretics to help get the extra fluid off, and help him urinate it off. The doctors also put him on more blood pressure medicine. When I left tonight his blood pressure had finally come down, and he was more alert. He's lost a little of his fluid weight, but still has more to go. I figure we will be in another few days. When a person has extra fluid you have to take the weight off very carefully. The PICU team is awesome, and we have 100% confidence in their care with Christopher. He even drank two ounces of Pedialyte tonight and didn't throw up! We can also distinguish more of his facial features, his face is slowly going back to normal. He was so swollen you couldn't make out features.

Joe and I decided to cut back the amount of pain medicine he is getting. He was in some pain after surgery Thursday, and we will probably cut off the continual infusion tomorrow. We will give him intermittent medicine when he needs it. He was TOO comfortable this morning, and we decided it was time to go down on the pain medicine.

We want to thank with all our heart Mighty-Max's entire family and Aunt Dana. We received your bag of goodies today and you continue to fill our hearts with hope and love. We have been so blessed with so many angels that have been put in our path.

Saturday April 24, 2004 Day +93

Happy 1st Birthday Christopher!

We all Love You!

A wonderful Birthday morning followed by a trip to the ICU

Despite being in the hospital for his first birthday, Christopher's birthday was filled with more love and happiness than I could ever imagine. The nurses in PCRU (the floor he was transferred to) surprised us by having his room decorated when we were transferred. It was filled with signs, and streamers, and brought tears to all our eyes. Our angel Nurse Becky made sure we had a cake and party favors, and the Child Life Coordinators brought cards and toys. Nurse Grace brought some snazzy new outfits and balloons for his room, and Nurse Alisha baked cookies. The grandparent's came up, Aunt Lindsay and Uncle Brad, and "Aunt Meredith" and "Uncle Don" came from Va to visit and deliver food. Even though Christopher was a little sleepy from his pain pump we did sing Happy Birthday and stuck his hand in the cake. We want to thank all our wonderful friends who sent cards, gifts, and phone calls. We are so blessed to have you all in our lives and our sorry we are so behind in returning calls and thank you notes Even though today was never what I expected, it was filled with a different type of love and hope that is greater than I could have imagined. There are so many wonderful people who continue to bring us love during our darkest times. However, in true Christopher fashion, he has to make sure every day is filled with excitement and we ended up back in the PICU about 7pm. (You would think his birthday would be excitement enough for one day)!

We went to the Intensive Care Unit because his blood pressures became too high again, and he was retaining too much fluid. His heart rate was also high, and he was puffy and swollen again. In the Intensive Care Unit we can give him more medicines.

So here we are, 1 year later, right where we began. Christopher started off his first day in the Neonatal Intensive Care Unit, and 1 year later we ended up in the Pediatric Intensive Care Unit. After being in the hospital  and away from home for 5 months it's becoming hard to "justify things" and make rationale. However, Joe and I figured we can give up his first year if it brings us many more years to come. I never imagined how one year could change your life so much! Not only have we become parents, which is a life altering event in itself, we have had to learn to overcome a chronic illness, away from friends, family and home. I haven't even seen my dog in 4 months (in our house dogs are like real people). Many people ask how we do it, how we cope, and I don't know. You just put one foot in front of the other each day, and just do it. God and fate guide those footsteps after that.

Friday April 23, 2004 Day +92

Christopher was extubated last night around 12:30 am, and is off the ventilator. They were trying to keep him sedated until morning to help with swelling, but he was fighting and trying to pull the tube out. Unfortunately, when the kids are in the PICU the parents can't spend the night, so the doctor called the Children's House about 12:45 am, extremely excited the extubation had gone well. They also removed his foley catheter and naso-gastric tube (a tube that goes from the nose down into the stomach) this morning. The PICU nurses have been great, and taken excellent care of him. We will be moved out of the PICU later today and into another room where he can still be monitored. He is still swollen, and has to heal from his surgeries. We have been trying to feed him Pedialyte, he's starved. However, it comes up every time. A lot of times after abdominal surgeries patients have a hard time eating and drinking again for a few days.

I was so proud of him after the doctor called and said he had gotten off the respirator. He's fighting so hard! I actually left the ICU about 9:30 because I was worried I was over stimulating him. Every time he would hear my voice or grandma or grandpa's (Joe had to go back to VA for a few hours) his eyes would pop open and he would try to start "playing" by pulling his tubes out. After I got off the phone with the doctor I fell asleep thinking "You go Christopher and keep on fighting."

Thursday April 22, 2004 Day +91

A stay in the Intensive Care Unit and a day in the OR

Christopher was transferred to the Intensive Care Unit at Midnight last night. He had been extremely swollen all day long and became fluid overloaded from all the IV fluids he was on. He was so swollen you couldn't even identify facial features, and his eyes were swollen shut. I was than kicked out of my room at 2 am after Christopher being admitted to the ICU and forced to relocate. So, I packed all my stuff up in a wagon, and rolled  across the street at 2 am after having admitted my baby to the intensive care unit.

Surgery lasted about 3 hours today and the doctors and nurses were AWESOME about keeping us informed. The anesthesiologist, surgeon or nurse came out about every 20 minutes to give us an update. He had the following:

Ear tubes put in by ENT, a skin biopsy (his skin is beginning to show signs of GVHD again), removal of old central line, and insertion of new one, a laparotomy, umbilical hernia repair and liver biopsy. Unfortunately, when the doctors tried to do a laparoscopic procedure Christopher became unstable. When you do a laparoscopic procedure, you fill the abdomen up with gas, and it sometimes causes trouble breathing. It became too dangerous, with him being so swollen to do the procedure laparoscopic, so the doctors did an open procedure, which is open abdominal surgery. He has about a 3 inch incision on his tummy. When they went to make the incision on his belly button, over 100 cc of abdominal fluid came out, this is how swollen he was.

The doctors felt it was too unsafe to extubate Christopher (remove the breathing tube). So he is currently intubated (tube in his throat) and is hooked up to a ventilator/respirator that is breathing for him. They have drugged him so he is "out of it", but he does respond to my voice, and Joe's and will squeeze our fingers very tight. The doctors will extubate him in the morning when they feel he can breath more safe on his own, so he will stay intubated over night. He has a lot of swelling in the upper airway, and if they removed the tube too fast it could cause respiratory distress. They have him on pain medication and he is very comfortable.

The surgical team was incredible today, very kind and helpful. I got to help "gas him down" (the first phase of anesthesia in the OR and hold the little mask over his face). Since this is my job and I do it everyday it killed me to be doing it to my baby, but I had to be the last person he saw before he went to sleep. The drs. told us this was a risky surgery because of his current fluid overloaded status.

The doctor thinks the specimen he took from Christopher's liver is NOT cancerous, and is just a benign piece of the liver. He sent a ton of specimens and we are waiting for the final results.

Please, please pray for his recovery. He keeps fighting his breathing tube, and trying to remove it so they had to put restraints on his arms. He will open his eyes some, and lock eyes with me, and seem to get some peace and becomes comforted again. It's almost like he is trying to say, "OK mom, time to take the tube out and start playing."

Tuesday April 20, 2004 continued 9 p.m.

After waiting all day we finally went to surgery. Poor Christopher had not eaten and was not a happy camper. We had the bronchoscopy and bone marrow aspirate done today. We have to move the central line revision and laparoscopy until Thursday because there was not enough OR time today.

The bone marrow aspirate went fine. The bronchoscopy turned out OK, and the doctor said he saw NO signs of fungus, virus etc... They sent a bunch of specimens from his lungs and we will wait to see what they come back as. All of his other blood cultures and samples are still coming back negative. The doctors still have NO idea as to what was on the CT scan and the infiltrate  on the lungs is.

He came out of anesthesia screaming and yelling, after all the surgeries he's had we have never heard him scream this loud. He truly broke the sound barrier! I think he was in a lot of pain.

We are very worried about the laparoscopy on Thursday, and I pray they don't have to do a liver resection and open him up. Please, please keep us in your prayers this week everything will be OK in surgery Thursday and they won't have to do a resection.

We need all the prayers and miracles we can get.

Tuesday April 20, 2004 Day +89

Surgery today

We are waiting to go to the OR to have numerous procedures done. Christopher will have a bronchoscopy, bone marrow aspirate, new central line and a laparoscopy. Late last night the doctors told us they had reviewed the CT scan some more and found a mass/anatomic anomaly on his liver. They are not sure what it is, but we have to investigate. A laparoscopy is where a tiny incision is made in the belly button, and two other incisions are made. The doctors put their instruments and camera through the incisions and can see everything on a TV screen and manipulate their instruments by looking on the screen. However, if the mass turns out to be large, or needs to resected, they would have to make a big surgical incision and possibly resect part of the liver. We are all praying this isn't going to happen.

Christopher is in his bed howling at the air because he can't have a bottle since we have to go into surgery. It is so hard to believe the scan showed all this up. We just hope everything goes smoothly and with as few bumps as possible today.

Monday April 19, 2004 Day +88

Counts: WBC: 5140, ANC: 3187

We need a little miracle.

We were seen by half of the specialists in the hospital today. Cardiology came by and did an echocardiogram and found a little fluid around his heart, however they don't think it is anything to be concerned about. Infectious Disease came by because they will be deciding on the medications. Nephrology (Kidney specialists) came by and will do some scans of his kidneys at a later time. Pulmonary came and looked at the CT scan. There are still spots on the CT scan nobody can figure out so we will go to the OR tomorrow for a bronchoscopy. It is a short procedure, but he will have to be intubated. They stick a tube into his lungs and do some washings to get specimens to be sent off for culture. If these all come back negative, the doctors may have to do a thoracotomy or thorascopy to take tissue from the lung. This would involve an incision and chest tube . I REALLY don't want to do this, it will still be a few more days out to make this decision and will be dependent on the bronchoscopy. I also think I might request a repeat CT scan if we did get to this point to see if the mysterious lung nodule has gotten any better. Please, Please, pray we don't have to do this. We really need a miracle to get out of here and to get him better. The drs. said they also found a small mass of connective tissue by the liver and they are not sure what it is.

The unbelievable thing is he has NO symptoms of lung involvement. No coughing, sneezing, fevers and his counts look great. His lungs sound wonderful when you listen to them.  He drank his bottle today and his appetite is better since he has been off of some of his old meds. Joe and I are just so blown away. We feel like we are back in the same place we where in back in January when we had to make the decision to transplant. Christopher had just turned around and started to look so good and we had to make the decision to start putting him through procedures.

Sunday April 18, 2004 Day +87

Still in hospital - We will be here for a while

Counts: WBC: 11,170, ANC: 7,931

We are still in the hospital for the Hemolytic Uremic Syndrome (HUS). His blood cultures showed his red blood cells are still looking "fragmented." Red blood cells should be round in shape, and his look like Pac-Man. The doctors ran a Coombs test yesterday to see if his body was creating antibodies attacking his blood, luckily that test came back negative.

We had a CT scan done which revealed something very surprising. It showed both lungs, at the bottom of the lungs, are starting to develop some type of disease process. The doctors don't know if it is viral, bacterial or fungal. On regular examination his lungs sound fine, and he has no fever or symptoms of lung disease. The doctors are going to start him on a parade of drugs to try to stop whatever process has started. They are trying to decide what drugs to start him on since they are unsure of the exact nature of what is going on with his lungs. I worry about the antibiotics, because they always make him so sick.

We have stopped three of his medications, and started him on two new ones. We stopped his immunosuppressants Cyclosporine and Cellcept, and started him on a new drug. The doctors felt like the cyclosporine was causing the HUS, and the Cellcept was causing the GI upset and vomiting. They think he may have gotten Cellcept toxicity. His appetite has improved today, and we gotten about 6 ounces of Pedialyte down without him vomiting. He hasn't vomited in 12 hours, so we feel his GI tract may be improving. We also stopped his blood pressure medicine Norvasc, and started him on another medicine that might not cause as much GI upset.

Joe and I are very upset. We will have more consultations tomorrow by Cardiology because the CT scan showed a little fluid around the heart (but we think it is nothing).  Also, a pediatric radiologist will have a 2nd look at the scan closer.

His counts, blood and platelets are good, and he looked better today than he has in a while. We are trying to look at the lung infiltrations they found in his lung through the CT scan as something that was caught early, and we avoided what could be fatal lung infections later on. The drs. were not looking for anything on his lungs and found it, perhaps it was meant to be for us to be in the hospital now and have the CT done. It is the only positive thing we can think of to help make it through a bad situation again.

We obviously won't be home for his birthday now. I know it seems like "just a day", but to us it was a symbol of an entire year of fighting, so hopefully he can have many more birthdays. Joe and I just want him to be a "baby", not a hospital patient. It breaks our hearts, we have both been having dreams of him doing "baby" stuff like running and playing.I really hope we don't get stuck here for weeks. We really, really need to go home and be a family again. I will never again take for granted just the three of us in our own home, just hanging out doing nothing. It will be compared to heaven when we can be together out of a hospital and in our own beds.

Please, please, please, pray for a miracle. This little boy is such a fighter, he keeps getting knocked down and somehow finds the strength at one year of age to get back up again. He wants to live, and I believe he does have a life out there waiting for him. Please pray he will get there, he is so beautiful inside and out.

 Saturday April 17, 2004 Day +86

Counts: WBC: 8,260 ANC: 5,369

Readmitted to the Hospital - AGAIN

Unfortunately Christopher was readmitted to the hospital late last night about 10 pm. Of course I was in Virginia, I had gone for Dr.'s appointments, and Joe's car had broken down so I ended up missing an appointment anyway. (Many thanks to our buddy Marc for rescuing me, and getting the car started, and saving the tow truck from coming)!

Anyway he was admitted with something called Hemolytic Uremic Syndrome. It is characterized by renal failure, hemolytic anemia, and thrombocytopenia. I am very confused on everything myself. Basically his red blood cells are sticking together, when they go through the kidneys to get filtered, the kidneys fragment the cells. The lining of the kidneys is messed up.This causes him not to get enough oxygen in his cells. His Red Blood Cells Counts and Platelets have dropped. He is getting Blood today. At this point they feel it is a mild case and we aren't near a dialysis standpoint. This is all confusing, so I hope I am explaining everything OK.

Christopher has been throwing up A LOT, usually one to three times a day. We have taken him off of his Cellcept and Cyclosporine (immunosuppresant drugs). The Cellcept can cause a lot of GI problems so this may be the source of the vomiting. The Cyclosporine may have caused the Hemolytic Uremic Syndrome, so we are stopping this. Supposedly with cyclosporine this can happen after transplant. The doctors are putting him on a new Immunosuppresant drug called Rapamycin, and increasing his steroids. Since we are changing his immunosupressant drugs, we are watching for a possible graft vs. host flair. This is another reason they have admitted us.

We are suppose to go the OR two times next week, and hope we can still go. He is suppose to get tubes for his ears on Monday which he DESPERATELY needs. His head is totally full of fluid. He is suppose to go on Thursday to take out his central line and put in a Mediport, and do a bone marrow aspirate. So, we will take it day by day and see what happens.

I can't believe we are admitted again and have taken a dip down on our roller coaster ride. I pray it is a small dip. We are so close to being home. The doctors are taking blood cultures and looking at the shape of his blood under the microscope all weekend (they can see if the kidneys are still causing it to fragment).

Please keep us in your prayers. I am worried about his long term kidney outcome, they have taken such a beating. Also, these post-transplant complications are the ones that are the hardest on the kids. We need your prayers more than ever right now.

Thank you!

All our love, Paige and Joe

Tuesday April 13, 2004  Day + 82

Christopher officially hates his room and fusses and cries all day whenever we are here. No matter how many toys, or how much I play with him he moans and fusses (this includes all hours of the day, even those when you should be sleeping). The second we walk out into the hall or the kitchen, boom! No more crying. He starts laughing and looking around. So off we went to Walmart today. Not one cry or fuss the whole time we were out, however, as soon as we got back to our room it started again! We bought some new toys for our friends still in the hospital to try and cheer them up. We will make our surprise toy delivery before clinic tomorrow. Surgery is scheduled for next Thursday, I know it will make life easier, but I am dreading him having to the OR and be intubated again.

After a little bit of paper work, faxes and phone calls, we found out we can officially start seeing the new oncologists in Fairfax. Yipppee!!!!!!!!!!!

His first appointment will be for April 26. I just work to keep him healthy so we can get him out of Hopkins. He still is not eating a lot or taking a lot of bottle, so I work all day long getting sips of bottle or food down him, and eventually he gets calories. Maybe when we get ome he will eat better. The funky scab on his chin is much better. I think his formula was just pooling and causing some skin breakdown. Please, please keep your fingers crossed we can go home. It's gotten so difficult being here. 

For our buddies in Northern Virginia, Joe wanted me to let everyone know he is a celebrity and was on Elliot in the Morning on DC101 for 5 minutes this morning.

Monday April 12.2004 Day + 81

Counts: WBC:5,780, ANC: 3,930

Regular day in clinic, non-eventual. Christopher has a funky scab on the corner of his mouth and chin, and they started him on two more medications. Unfortunately, there is no room on the surgery schedule this week, so we will have to wait until next week for surgery for a mediport. I'm still giving him IV antibiotics at home, and it is easier to give through his catheter now, so this may work out for the best.

The oncologists in Northern Virginia called us, and we are starting to get the paperwork rolling for transfer!

Sunday April 11, 2004 Day +80

Many thanks to Grandma Karen, Grandpa Lin, Uncle Brad, and Aunt Lindsay for bringing the Easter Bunny to us.

HAPPY EASTER!!!!!!!!!!!!!

We are so thankful for everybody and all our readers!!! Easter is a time of renewal and you have all renewed our hearts, our spirits and our lives. God has truly blessed us!!!!!!

Saturday April 10, 2004 Day + 79

Christopher woke up as an extremely fussy little guy today. It hit me, he's bored! He has been in the hospital his entire life and has never had a chance to be a baby. I truly believe in a psycho-social component to healing, so today would be a total baby day. We put him in his stroller and took him to the Inner Harbor and he loved it. No grunting or fussing the entire time. He came home and played, and it was nice to have such a good day.

Christopher's Badge of Courage

The only thing that bothered me about our trip to the Inner Harbor was the extreme rudeness of people. Christopher is still bald, and has to wear a green face mask outside. The amount of people who stared at him and made comments about the "baby" was overwhelming. It totally crushed me. I thought I was just being sensitive until at one point Joe stopped pushing the stroller and said "Do you see all the people staring at him?" I'm not a violent person, but I wanted to cause bodily injury to each and every person staring at him and kick them. Anybody that has a family member that is unique and special knows this pain I am talking about.

Having had open heart surgery twice, I myself have scars on my chest, stomach, back, wrists and hands. I have what is referred to as the "zipper scar" that is on my chest. When my grandpa had open heart surgery two years ago, I welcomed him into the zipper club, he told everybody he and his granddaughter were in the zipper club together. Over the years people have made rude comments about my scars. Even to this day, I will on occasion have someone point at my chest or make a comment about my zipper scar. My mom always called it my "Badge of Courage". (When Joe and I were dating he called my zipper scar my Badge of Courage, and I knew than that he was the one, he said what my mom had said)!

So to me Christopher's bald little head is his Badge of Courage. His hair will grow back one day, and he will stop wearing  his face mask in about 6 months. He will always have the scars on his chest from his central lines and Mediport. Maybe one day he will have hair that will grow over that. People will look at him and not even know the "Badge" he has already earned in life. Until this time I have been hesitant of people taking pictures of him. I didn't want him to ever look back as an adult and see himself so sick. I was worried it would make him sad (I'm already thinking 20 years down the line). I think I will allow pictures to be taken again. He deserves to have a picture of what his Badge of Courage looked like. Perhaps a picture will give him "courage" if he ever faces difficulties as an adult.

Friday April 9, 2004 Day +78

Counts: WBC: 5, 970, ANC: 3940

Long day today, we have been at the hospital every day this week and we are all pretty tired. Christopher had an enzyme infusion today that went pretty well. We than went to the Oncology clinic, and he had a good checkup. He is starting to hold formula down and hasn't vomited. We decided we will definitely go to surgery next week for a Mediport, and if possible tubes for his ears (if we get an ENT consult in time, if not we will get one when we get home). I hate having to go to surgery again, but the Mediport will be much better for him at this stage.

 After much begging and talking with the doctors, they said we may be able to go home to Virginia in two weeks for good! This would put Christopher in the day +90's. (This can only happen if he is doing OK, please keep your fingers crossed). We asked if we could be home for Christopher's birthday, and if all goes well me may be able to make it. That would put our last clinic visit at Hopkins on Friday April 23, and his first birthday on Saturday April 24! This is a HUGE goal for Joe and I, and means more than anything.  His first year of life, one solid year of chemo, transplant, hospitalizations, Intensive Care stays, surgeries and procedures can maybe come to a close. Perhaps his first birthday will mark a time of renewal and a new start for many birthdays to come.

Thursday April 8, 2004 Day +77

Counts: WBC: 5, 870, ANC: 4,813

We got discharged late today!

We got discharged late today, and got to go back to the Children's Center House. Christopher's fever broke and he was able to hold down Pedialyte and his medications. None of his cultures came back showing anything positive so far. So, this was either the stomach flu, a sinus infection, or an infection somewhere else (his cultures can still come back at any time showing growth). He will be on IV antibiotics for about 20 days, and Joe and I can administer those at home.

I ran into the Pediatric surgeon in the elevator, and had him come and take a quick look at his central line. He says it is definitely on it's way of coming out. Central lines have two cuffs that help keep it in place. Both have come out. One good yank from Christopher being bored and out it will come. We will probably go back to surgery sometime next week to have a Mediport placed. A Mediport is a little bigger than a quarter and goes under the skin. We would put numbing cream on the skin about half an hour before he needs blood drawn. You can than use it as a vascular access device and use it to draw blood, or give infusions. Joe and I think this will be a wonderful solution.

With Christopher's first birthday approaching in two weeks, I had been very upset the past few weeks about what Christopher is NOT doing developmentally at this point (such as sitting, eating etc...).  One of my sorority sisters, sent me an e-mail that changed my entire way of thinking. I would like to share it, and will also put this on my "Inspirations page" in hopes it may help others.  Here's what she wrote:

Christopher may be "behind" in the "typical" baby milestones...but my goodness, he is worlds ahead of other babies his age in so many more ways.  

Christopher knows strength unimaginable to other 11 month olds, his "fight or flight" instinct is more refined than the majority of babies his age will experience in a lifetime.

 Christopher understands a parent's love more than other 11 month olds, having experienced the effects of unconditional love that most parents will only ever express to their child through words, but never have to actually show them what it means.  

Christopher has experienced the power of having the world pray for him, and felt the presence of God in his every pitfall and triumph.  And most of all, Christopher knows courage other 11 months old could never even imagine, nor would most adults.

To my dear friend April, thank you for changing my way of thinking. I will never worry again if he can't sit or eat, those things will come with time. I will not worry if he isn't crawling now, he will eventually. For now he has experienced the beauty of the world, and the love and kindness of friends and strangers That is truly a gift some people will never get, no matter what their age.

We would like to thank our wonderful friends Matt and Michelle Dates, and all their family and friends. Matt and Michelle held a fundraiser for us in New York. You hold a special place in our hearts and you have always been there to stand by our sides, be it out wedding day (Matt was our best man) or when our child is sick. We are blessed you have always been in our lives.
 

Wednesday April 7, 2004 Day +76

Counts: WBC: 11,700, ANC: 8,658

Lots of testing done today. Christopher's central line is hanging on by a wing and a prayer, and we got a chest x-ray done to confirm placement. The stitches have popped on the outside that was helping give it support and stay in place.  We also had ANOTHER CT scan of the head done. The drs. want to compare it to the CT scan from last week to see if there has been any changes with his sinus's. We also had a PUVA treatment. His GVHD is resolving nicely, but illness like this can cause flares so we have to be careful.

 Christopher was a fussy little guy today and didn't feel well at all, I think he was in pain with his stomach. He was still vomiting until late last night. I got 8 ounces of Pedialyte in him today (over a 12 hour period) that he was able to keep down. I would give him a sip, than wait a while before he took some more. He was also rejecting his bottle and "moaning" all day. He does this grunt/moan when he hurts so we gave him some pain medicine. He was able to take 2 medicines by mouth and not vomit, which I felt pretty successful about.

He is on IV fluids, and all his other medicines have been switched back to IV. He was very anemic today and got a unit of blood. However, this is his first transfusion of platelets or blood in almost a month! Joe and I feel really good about that, the smallest things like not getting blood transfusions for a month make me feel so proud. It shows he just keeps on fighting.

No word on how long we will be in the hospital, I suspect through the weekend. His fever broke, and is back to a normal temperature which is very good. We are still waiting on the cultures we took yesterday to see if any bacteria shows up. Christopher's on an IV antibiotic now, but if a certain strain of bacteria shows up, we would have to readjust his antibiotic.

So, I quickly readjusted last night to being in the hospital again. I forgot how nice it had been to sleep without IV machines going off every hour and the parade of people and testing all day long. Please keep those prayers coming we won't get stuck in the hospital again. Christopher has such a hard time with no consistency and jumping from place to place. The poor little guy just doesn't understand. I always try to bring his own blankets and quilts to line the crib with in the hospital so he can at least be comforted by his own belongings.

Thank you to everyone for your continued support and prayers!!! We are so thankful for everyone out there cheering us on!!!!

Tuesday April 6, 2004 Day +75

Readmitted to the Hospital

Unfortunately we were readmitted to the hospital today. Christopher has been throwing up, and can't keep anything down. Because he has been vomiting, his immunosuppresant drugs are not being absorbed. These drugs are critical at this point in transplant. He has also been running a low grade fever, and his White Blood Cell Count is extremely high. If your white blood cell count shoots up high very quickly, it usually means your body is battling an infection somewhere. His has gone up by from 9,870 to 15,670 since yesterday.

His spirits are OK, and he has been playing a little. He plays, pukes, than goes back to his new "cell phone" (it's really a plastic teether). They have him hooked up to fluids, antibiotics and more medicine for his adenovirus. His adenovirus has spread again. We will be in the hospital for a minimum of 48 hours, waiting for blood cultures to come back. I am so scared. I don't want to get stuck in the "spiral" that often happens when you get readmitted to the hospital and end up staying there for weeks. We are so close to almost coming back to Virginia, I cried all day I am so heartbroken about being readmitted. I am very tired, please, please, pray for Christopher that he will be healed quickly and we can discharge him soon.

Friday April 2, 2004 Day +71

Counts: WBC: 10,760 ANC: 7,279

We met with the head oncologist today hoping to go home sooner than +100, no luck we have to stay in Baltimore a few more weeks. We were very disappointed, and are anxiously awaiting a transfer to our home hospital (and my place of work) Fairfax Hospital as soon as possible. There have been events the past few weeks that have prompted our longing to go to Fairfax for  and we will just have to take it day by day for the next few weeks.

Clinic went fine, but I think Christopher is still feeling bad from the sinus infection. He still vomits mucous once or twice a day. I feel like my new perfume some days is "Ode de vomit".

They talked to us about getting tubes put in his ears and an Ear, Nose and Throat Consult, and we are totally fine with with this. I think it will help the chronic ear infections. It's also very non-invasive and will be the easiest thing he's had done. Just a little Versed, a trip to the OR, and Boom! Hopefully no more ear infections. We hope to see an ENT soon and would rather have tubes put in now sooner rather than later. He also grunts a lot. We think he may be trying to talk or make sounds and there is too much fluid in his ears. The tubes may also help with speech.

We got the results from his Glomular Filtration Rate test back and his kidneys still are not functioning  at the level the doctors wish to see. The level should be around 100, and he is at 43. He is still doing OK, and excreting what he should, there is NO talk of dialysis, however we will have to keep a very close eye on this over time.

Thursday April 1, 2004 Day +70

I can't remember if I have shared some of the best news of all we have gotten recently. Christopher's bone marrow aspirate from day +60 came back with 100% donor cells. No Hurler's cells (Christopher's bad cells) have crept back in. Also, he can bend his hands now. Dr. Kahler could bend Christopher's hands the other day, just like a regular child's. A huge accomplishment. Something so small like bending one's hands, yet such a step forward for us.

A year ago today I quit work and started maternity leave per drs. orders. (Christopher was born on April 24). I never dreamed where I would be today, one year later. What many people do not know is  throughout my pregnancy I felt like something was "wrong." I can't describe it, I just knew. I had dreams of us undergoing chemotherapy. I had dreams when I was pregnant that something was wrong with the baby. I wasn't a happy, jolly, pregnant lady, I lived with a sense something huge was coming. I come from a long line of "instinct people", perhaps my instinct was preparing me.

I have had open heart surgery twice, and was a high risk pregnancy. We had more prenatal testing done than one can imagine. Blood work, sonograms, you name the test, we had it done. Nobody in a million years would have thought to check chromosome 4.

 All the testing showed everything was fine, we were looking for cardiac defects with the baby.  It goes to show you the things you fear the most never happen-we were so worried he would have a heart defect. I was always worried I would have to have open heart surgery again. Never again will I be afraid of that,  if I do, I have it done and move on. It won't be a big deal. I often said I would have open heart surgery ten times over with no anesthesia, I think the pain would be less compared to this experience.

My friend Gina and I were riding in the car on a way to a baby shower,  a week before Christopher was diagnosed. I remember saying to her, I feel there is a genetic defect with him. I contribute it to part mother's instinct, part nurse's instinct. I knew throughout the pregnancy, deep in my heart, something was wrong with Christopher. I am actually writing a book/memoir that chronicles this experience.

I have come to the conclusion, and found peace,  that the first few year's of his life may not be like every other baby. He will have more hurdles, and many more road blocks than regular "baby milestones." Things will just be harder. When we go home, our journey will be far from over.  Our weekly parade of doctor's visits will continue for quite some time. Since his immune system was wiped out, we have to start over with his immunizations and get all his vaccinations again.

I will never, ever take for granted any little accomplishment he does. I have truly learned to appreciate every hour, of every day, God has given us. If I am at work, playing with my baby, or just holding hands with Joe, I have learned to give thanks for every second of life. The little every day problems that use to bother me are gone.

Christopher has no muscle tone, and no strength at all right now. (However he does manage to pop his head up from his pack and play and fight the power of sleep). His legs are little sticks.  One day when he does sit up on his own without toppling over, my heart will melt. Last night he took a bath without screaming and actually laughed at the rubber ducky,  I was so excited I called my mom and dad. He still has anxiety thinking we will hurt him when we put him down, but it is slowly getting better.

 When he rode in his "big boy" car seat I thought I would cry. He has to work so hard for every simple goal. I believe this experience has taught me to look at the simplest acts in life, and cherish them as if they were gold.