Charlotte Jean Keiller
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Charlotte Jean, where to begin - July 9, 2002 was one of the happiest days of
our lives when she was born. She was so tiny and precious. What an angel. We
knew that everything was not 100% when she was born, as she had some open
lesions on her head that we were told were Aplasia Cutis Congenita. She had an
MRI the day after she was born and after a later visit with a neurosurgeon, they
advised that it was nothing serious and otherwise she was healthy. But. . . she
wasn't putting on any weight. After months of trying all different types of food
and ways to get her to eat more we were sent to a pediatrician who, on November
6, 2002, admitted Charlotte to the hospital for Failure to Thrive. They started
feeding her by an NG tube and all was going well. Then a different pediatrician
noticed she was tachypnic and took a chest x-ray. Then all the "fun" began.
We were transferred to the Stollery Children's Hospital for further tests as it looked like her heart was enlarged and there was a mass in her chest cavity. After 21 days at the Stollery and numerous tests (Echocardiograms, ultrasounds, CT scans, Fluoroscopies, VQ scans) she was diagnosed with an Atrial Septal Defect "ASD" and a diaphragmatic eventration/hernia (they couldn't quite tell). Because ASD's do not typically cause FTT or other problems in 99% of the children with them, and because of the presence of the diaphragm problem, it was thought that the left diaphragm problem was the cause of her FTT and tachypnea. It was determined that the mass in her chest that was present in the first x-ray, was actually her liver that was moving up into her chest cavity and interfering with her lung function. Her diaphragm was not strong enough to inflate her left lung or keep her liver down in her stomach area. We were sent home to try and fatten her up with the tube feedings, but she still was not gaining any weight. The doctors thought that if we fixed her diaphragm, her breathing may get better and that should help her gain weight.
So, on December 17, 2002 she was re-admitted to the Stollery to have her Diaphragm operated on. In Charlotte's case, the expectation was that she would be home for Christmas. However, she ended up being in hospital for 303 more days, 144 of those in the PICU. We had a lot of difficulty getting her off the ventilator after her diaphragm surgery. As a result, she spent Christmas and New Years of 2002 in PICU.
After she successfully got off the vent, she went up to the ward to fatten up and then hopefully come home. Well, she didn't gain weight very fast, her breathing didn't really improve and she was becoming more dependent on oxygen. It appeared that she was in early stages of congestive heart failure (dependent on oxygen, reduced bladder function, enlarged liver, etc.). As a result, it was recommended by the cardiac surgeons to close the hole in her heart, and on February 7, 2003, she went for open-heart surgery. The surgery went well, and it was discovered that the hole in her heart was "huge" so the surgeon thought she would really benefit from the operation.
However, the trouble of getting her off the ventilator began again. It was discovered that the right diaphragm that was previously functioning normally (the left one that was operated on was "tacked" in place) was temporarily paralyzed. We tried for 6 weeks to get her off the ventilator with no success, so the only decision we could make was to put in a tracheostomy tube. This would allow her to stay on the ventilator for as long as she needed, but also allow her to be a baby again. We were able to wean off all the sedatives and she could begin to move around. It took another 2-1/2 months to get her out of PICU and up to the ward. After a long 4 months on the ward, fighting with the government to fund the ventilator that Charlotte needed (That is another long story), we were able to FINALLY bring her home on October 16, 2003. Overall she went through 7 operations, numerous tests and procedures, fought off several infections and survived a 107-degree temperature which she had for 2 days. Throughout it all she has been a real hero.
So much has happened since she came home. When Charlotte came home she was only off the ventilator for 5 minutes at a time, maybe 2-3 times per day and could just sit up on her own. We slowly increased the times she was off and with wonderful help from our Home Care Team, Nurses, PT, OT, Speech etc., we were able to get her off the ventilator completely Oct 2004. Charlotte had a Bronchoscopy on Dec 8 which showed her airway was pristine and then for a Level 1 sleep study Dec 9. Well, the sleep study didn't go well as Charlotte wouldn't cooperate. She kept pulling off all the leads - I should have known it wouldn't work when the lab tech stated that she has never had a child that she couldn't get all the leads on. Charlotte doesn't do anything anyone expects. We left things alone over Christmas and New Years and then started plugging trials. She is now plugged 24 hours but we haven't got in for Decannulation as RSV is very bad in our city this year and we don't want to take the chance. Hopefully by the end of April she will be decannulated and we can get on with a "normal" life. We can't wait to go camping again - Especially her big sister.
Update November 2005: What an update I have for you on our little
Charlotte. . .
Once the doctors felt that the hospital was clear enough from the bad RSV
season, Charlotte went in to the hospital on April 14 and was decannulated. We
stayed overnight so they could watch her closely, then I convinced them to let
us go home the next day. We were only in hospital 18 hours! What a treat for us.
Since then Charlotte has never looked back. Her voice is so strong and clear -
it makes your heart melt. We were able to take her camping and went for a long
and well deserved, holiday. Charlotte, again, did things her way and the trach
stoma did not close on its own. On September 9, she went in again and had her
stoma surgically closed. Again, we were only in the hospital overnight. Dr.
Eksteen managed to do the closure without intubation and she came through with
flying colors. 20 minutes after coming out of recovery, she was running around
the hospital like she owned the place. She is so strong - she didn't even need
any pain killers! Now we are working on oral feeding and learning to talk. It
has been a long road, but it is so nice to finally have our house to ourselves,
no more equipment, and just be a normal family! I have also included some
pictures - Enjoy!
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