Sydney, as I mentioned before has been having issues. These have been continuing and now increasingly getting worse. Her sats are low (79) but will dip down to into the low 60's. Two times last week she had core cyanosis episodes (purple/blue lips, gums and tongue). We ended up in the pediatricians office. Sydney has been on and off nebs since Dec. We have been working with Cardiology and Pulmonology to try to figure out where the issue is---currently to no avail.
A few weeks ago, we noticed her tummy getting bigger, but thought that she was finally gaining weight. On Feb 18, Sydney had her first cyanotic episode. She looked bad--hands ,wrists, tongue, gums, lips, feet--all purple. The pediatrician found a wheeze in her chest this time and treated her by increasing her nebs and sent her home. The same thing happened again on 23rd---this time no wheeze, high respiratory rate, trying to puke when any physical activity occurred (ex going to the potty) and her belly was very distended.
After leaving the pediatrician offices, we went to Dr Falterman's office. Sydney's liver is down (3 fingers in length) and she said Syd is in fluid overload (lasix was started). She did an echo and found the heart function to be good. Dr F said the fenestration has increased in size from 4 mm to 9 mm, and that there was a great deal of right to left shunting. Dr F said this meant it was time for the fenestration to be closed. Dr F felt that Sydney had a pulmonary hypertensive crisis. She had talked to Syd's Pediatrician and Pulm and came up with a neb treatment plan. It appears that Sydney heart rate (when it increases) helps Sydney sats---so alberol (q 4 hours), pulmocort (bid) and atravent (q 8 hours). Sydney also continues to be in junctional rhythm. Syd's cath is planned for March 4th, because pulm, ped and cardio feel that the fenestration needs to be closed now.
This is where things get tricky.
Today, March1, we took Sydney for her cath pre-op with Dr Lim. After an evaluation, Dr Lim came to completely different conclusions. He feels that Sydney is too sick to have her fenestration closed. He said by the size for her tummy and her liver....also by the appearance of Sydney veins in her neck---that Sydney's pressure are too high in her lungs. If the fenestration was closed at this point, the results could be catastrophic. He said that he did not know why this was happening, but the cath on Thursday should hopefully give some answers in to why the Fontan maybe failing. He was very concerned about Sydney's heart rate being so high. He wanted us to change Sydney neb tx's to Xoponex, decrease Atravemt because he felt that she was tachycardic . Dr Lim does not want her heart rate to go above 120-- but his ideal--would be for Sydney's heart rate to be under 100. He said they were going to check for clots, and see what meds she may need to help her. That is all he could tell us right now.
I am really struggling, because these diagnosis are very different--really at two different spectrum. Right now I have been trying the lower heart rate plan, and after two nebs with Xoponex and then an Atravent....I got her O2 levels up to 77. I am going to have her sleep with me tonight. I cannot handle this. I will let you know more as it happens.
Please continue to pray. We do not know what is going to happen.
Thanks bunches,
Crazy Christy
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