COBY'S JOURNAL
(ENTRIES WRITTEN BY HIS MOM)

May 14, 2000
We woke up early to be able to have time to get ready and get to the hospital by 8:30 am.  That is when visiting hours start in PCICU.  We called the hospital at 8:15 am and Coby had a good night.  He did fine with medicines and he was up and wasn't fussy.  No more than 30 minutes later Coby died.  We weren't allowed to see him while they were trying to save him.  We were allowed to hold him after his death.  It was the hardest thing I had to do as a mom. The second hardest task was laying him back on the bed and walking away.  You can read about his death and funeral through the link on the home page.

May 13, 2000
The transfusion when well.  His body didn't attack the platelets and his count increased some.  The check his blood pressures and temperature regulary and everything looked fine.  We are dreading the trip downstairs to PCICU. 

We get settled down in PCICU early afternoon.  We have to leave while they get him settled.  Coby didn't like us leaving.  The nurses said he was fussy when we left.  They are going to try one more medicine before surgery to help his heart pump better and they are also going to try one more thing to help his platelets (IVIG intervenous).   We were able to spend all afternoon with Coby.  They had to put an IV in his foot and Coby tried to pull out the IV.  He just found his feet the week before and he just doesn't know what is on his foot.  They had to tape us his foot and leg to hide the IV.

We had to leave PCICU for the shift change at 7:00 pm.  We went out to eat at a nice seafood restuarant.  We are trying to remain optimistic about Coby's future and look forward to spending one more day with him before surgery.  We return to PCICU just in time to give Coby his last bottle and to kiss him goodnight.  Before we left for the night, Coby smiled at me as I walked out the door.  He never smiled unless provoked.  That was the last time we would see our baby alive.


May 12, 2000
The doctors seemed concerned about a rash under Coby's neck.  We saw atleast 1/2 dozen doctors for a rash under Coby's neck.  The hemotologist still feel that Coby's heart condition is causing the low platelett count and that the only thing that will help his platelett count is the surgery. 

Coby's surgeon isn't optimistic.  However, he is always negative.  We did find out that surgery will be Monday, May 15th.  The one good factor for Coby is that everyone says he looks good.  Externally you can't tell that his heart is in such bad shape.  The chief doctor from PCICU came and visited us today and said he was thinking about tranfering Coby down to PCICU but since he looks so good they will wait and transfer him on Saturday.

We find out from a test one of the rash doctors ran that Coby has blood and protein in his urine.  This is a sign that his kidneys are acting up.  The heart doctors do not seem concerned.

The hemotologist want to try a platelet transfusion during the night.

May 11, 2000
My husband and I had a walk through on our new house today.  Believe it or not we are living in a hotel while we are building a house.  The house should be ready May 15th.  After we left the walk through, I had several messages on my cellphone that Dr Ron (the new hemotologist) was looking for me.  Before I could track down Dr. Ron, we received a phone call from Charleston.  We were told that some of Coby's blood work was worse and that we need to come back to Charleston.  We were told they would be expecting us.  We packed up and headed to Charleston.  We got to Charleston around 2:00 and no one knew why we were there. We had to explain to the nurses that Charleston called us - we didn't call them.  Finally, we find out the new doctor felt uncomfortable with us being at home and thought we should be in the hospital.  We were told that Coby wasn't any more critical than before.  Coby doesn't like the nurses and doctors always poking at him.  He cries the minute they walk toward him

May 10, 2000
Coby had an appointment with his cardio doctor.  The appointment ended up lasted all day.  The heart doctor referred us to a hemotologist in town.   Poor Coby had to have his finger stuck twice and then eventually they had to draw blood out of his head. Finding a vein on an HLHS child whose only had the Norwood is a difficult task.  Coby was very cranky and fussy with the long doctor visit.  We loved the new doctor.  We have been concerned with being at home but feel better after talking with the new doctor.  He is suppose to call us sometime tomorrow after he talks with the heart doctor and the doctors in Charleston.  The initial results of the blood count were higher so we are hopeful.

May 9, 2000
Today is our oldest son's ninth birthday.  For his birthday he wants us to make his brother better.  How do you explain that we have no control over that.  We are trying to deal with the fact that Coby has a very slim chance at surviving the next surgery.  It is hard to hold him, bath him, feed him etc.. knowing he might not be here in three weeks.  Our older son cries and wants to know why we can't make Coby better.  Coby has spots on his knee from the low platlett count and they haven't improved.  We insisted on seeing a doctor before May 26th.  Our doctor appointment is tomorrow and they will draw blood and check his platlett count.  We hope they have increased.  This is our precious baby and we hope God has Coby in mind for the next miracle.


APRIL 12, 2000
Coby has had a very rough month.  His oxygen saturation rates a low even on oxygen.  They are between 67 and 72.  Coby's second surgery was origianlly scheduled for April 26th.  However, they moved the surgery date to April 11th because of his low saturation rates.  His feet and fingers are always blue.  When he cries, his entire face turns blue.  We were relieved that the surgery was moved up.  We are not doctors but we just didn't see how he would make it till the end of April.  Three days before surgery, the surgeon called and postponed the surgery.  After looking through his notes, he has decided that Coby needs to weigh more.  Now surgery is May 2nd.  This is so fustrating.  The oxygen saturation rates are low but the surgeon doesn't think he weighs enough yet.

On top of all these, Coby developed a severe case of reflux.  He would dry heave and gag.  He would turn blue and lose his breath.  We had a very bad scare with him holding his breath while he was gaging.  After a trip to the ER, the doctors changed his reflux medicine.  Now the poor baby is on three reflux medicines.  I feel he is always taking medicine-5 medinces in all.  Coby isn't as cranky with the new medicine but he still isn't a happy baby.  We hope after this second surgery that Coby will be able to be happy and enjoy doing baby things.  We can't wait to take our baby out in public and show him off.

MARCH 10, 2000
I am almost done with Coby's website.  I hope to have the opportunity to show him his website one day and let him know how much he touched our lives and the lives of others.  Coby has had a good week.  I think the new formula is helping him.  His colick is not as bad and his reflux seems to be better.  Coby actually went to the zoo this past Monday and had a great time.  I will post pictures of his trip.  Now that the weather is warm and flu season has past, we are attempting to take him outside more.  We still will not go out in large crowds of people or indoors with him(i.e. restaurants, mall)  When Coby smiles he smiles with his entire face. 

MARCH
Coby wasn't getting better with the reflux medicine.  We have changed his formula to a special formula called Alimentum.  We hope this helps.  Now that his stats are low, we are so concerened when he starts screaming when we feed him.

FEBRUARY
We find out that his lungs were damaged from the blood not properly mixing at birth.  The good news is that lungs will repairs themselves in time.  Coby's stats are now in the high 60's on oxygen.  We can see signs that it is time for Coby's next surgery.  His fingers are blue and hisfeet are blue.  Coby is still very fussy and screams when you feed him.  We run the vacuum to help keep him calm.  They are putting him on reflux medicine and we hope this will help.  It is hard enought that Coby has a heart problem and hate to see him in pain everytime he eats.

JANUARY
We go for is catherization on the 24th.  We hope to finally find out answers to our many questions.  The main question is "why is he still on oxygen".   The catherization was very hard on us.  It was hard to hand them our healty baby and watch them sedate him.  Miraculously it was an outpatient procedure.  It took him about a week to fully recover.  He wouldn't eat for a week and we had him at the pediatricians office several times to determine why.  They never could pin point it and thankfully a week later he started eating again.  Coby is still very colicky.  His stats are still high 70's or 80. 

DECEMBER
Coby is very colicky and screams in pain.  We are worried that he will cry too much and his stats will drop.  We had a visit to Charleston to his check-up and everything looks the same.  This is the one thing that iritaes us-the doctors never say "he is going good".  They always use netural phrases-"He looks as good as he can", "He looks the same" etc.. 

We met his pediatritian, Dr. Whittaker,  and he is a wonder person.  He is going to take good care of us. We also met his cardio doctor and He seems to also be very caring person.  Coby's stats on oxygen are about 80 percent..