At 3 months of age, Carly had a balloon angioplasty for coarctation of aorta. Carly had stage 2 (hemi-Fontan) at almost 7 months of age with a very complicated course. We discovered that she had bilateral thalamic strokes with several "water shed" strokes 5 days post/op which we think actually occurred during surgery when she began hemorrhaging. She also had inactive seizures as well. A g-tube was placed in her stomach because she lost the ability to suck. Carly continued to have low sats post/op due to narrowed left pulmonary artery (LPA). Another cath done about 3-4 weeks post/op and her LPA was stented and collaterals were coiled. Carly was left with overall weak body tone, remained in CHOP for 6 weeks and was then sent to a rehab facility for an intensive 1-week stay for PT/OT/swallowing therapies.
In February, 2 weeks after discharge, Carly was back at CHOP for 12 days with RSV. She now receives PT/OT/swallowing therapies at home and is doing very well considering the number of strokes she has had. She can now sit up for a small period of time, loves to stand with support, eats "food" excellently and can drink some thickened liquids from a special cup that she has. She still needs the g-tube though since she is not taking in enough liquids by mouth. She is 13 months old and weighs about 17 lbs now. She is only on half baby aspirin every day and captopril 3x/day. Carly sees the PC every 5 weeks and has been satting in the very high 80's.
Her PC is estimating that the Fontan will be sometime between Jan-March 2002 when she is around 18-20 months old. Her surgeon would like her to be at least 22 lbs. Carly is an extremely happy little girl for the life she has had so far. She is tough and has beat the odds at least two times so far when the doctors weren't so sure she would. I cannot wait until this 3rd surgery is over. I dread her having to go through this again. But I'm hoping for a speedy recovery this time.
June 6, 2003 Update
Carly had the Fontan on Jan 10, 2002. She came home exactly one week after the surgery. Battled pleural effusions again but did so at home. Carly has had some episodes indicative of heart failure and we are in the process of going to CHOP for a sedated echo and probable echo to determine why she is having these episodes. Also, her saturation levels have dropped from 86 to 79. Currently, Carly is on Lasix, digoxin, captopril and 1/2 baby aspirin.
June 6, 2004 Update
I didn't plan it this way, but it has been a year since I updated Carly's portrait. We are now a little over two years post-Fontan. About a year ago we tried switching Carly from captopril to enalapril without success. She had signs indicative of CHF so we switched her back. Carly began the preschool handicapped program through our school district at the start of the 2003-2004 school year. Because of her continuously being sick and the harsh flu season and stomach virus that was running rampant, we decided not to send her back after Christmas.
Carly is, however, continuing to receive speech and OT services 2x/week per discipline at the Children's Hospital near us. Her speech is slowly emerging because of the apraxia but she is making some gains. Lately, she has been doing some extended babbling and even singing her own silly songs. Carly has made gains in using a spoon to feed herself and is even improving in using a fork which is challenging for her.
Our main problem right now is her teeth. We have been taking Carly to a pediatric dentist for check-ups and cleanings every 6 months since she was almost 2...she just turned 4. Since her last visit approximately 6 months ago, Carly presented with a mouth full of cavities which I am attributing to all her meds, especially captopril. I have since switched her to the pill form of enalapril which she seems to be tolerating well. Because she now requires dental surgery, we were back at CHOP to consult with the dentist there since she will need cardiac anesthesia and her hospital has been CHOP for all her surgeries. The dentist there feels that the worse case is that Carly will need 5 crowns and 3 caps which is unbelievable to me. So right now, I am waiting to hear when that surgery will be scheduled.
In terms of her cardiac condition, Carly is pretty stable. No arrhythmias wee noted during a holter monitor check. Her saturations have never been real high and she stays around 85-86 which is her norm. She grazes all day in terms of eating but is a slow weight gainer. She weighs around 31 lbs now but is a little over the 50th percentile for her height.
We got a heated in-ground swimming pool lat year which was the BEST thing I have ever done. Carly and her twin sister, Ryanne, LOVE that pool!! It is great exercise for Carly and she will float in her ring tube for hours. I got her the warm belly wetsuit this year for night swimming which has worked out great. My advice to anyone purchasing a pool is to get the heater. It is a little costly (around $1200 or $1600..I forget) but you will get so much more use out of your pool and our kids love the warmness of it. Carly will literally stay in the pool for hours when the temp is about 95 degrees.
This coming September, Carly will be joining a special needs gymnastics class which I am really excited about for her. She will also be returning to her preschool handicapped program which I am hoping she will be attending more since this year it will be the p.m. class she will be going to which will allow her to sleep in and not get so run down.
