Hello all. Gabi had kind of a rough late winter/spring. She suffered from bronchiolitis and then another bad cold/cough. She landed herself in the hospital for a couple of weeks total. No fun for logistics. But she recovered fully and is doing so great!!
Gabi continues to blow our minds as far as her development and her sense of humor. She is walking faster and does her darndest to keep up with all the kids. It is difficult to even think about handing her over to Dr. Tweddle. The thought of him opening her up again makes me sick.
Dr. Cava initially wanted to hold off her fontan until late summer but her endurance is just terrible. I would say that she can walk maybe 20 steps without getting winded and turning blue. Literally, her hose turns blue and her face gets dusky. She sometimes tries to fight through it as she desperately wants to keep up with her siblings and neighborhood friends. But she just can’t. We need to pick her up and give her a rest.
With that said, Dr. Cava and team agreed that she needs the fontan surgery sooner rather than later. Of course, Dr. Tweddle is booked until July. But if he gets a cancelation, it may be sooner. So, the cath will be May 8th and right now her surgery is scheduled for July 9th.
My brother, Tim, is getting married August 11th in Telluride, CO. I mentioned to Dr. Cava that we were considering taking the family, including Gabi and I wanted to get his thoughts as far as how altitude and oxygen levels would affect her.
He smiled and said she could not go. The lack of oxygen and less gravity to help her blood flow would just not be conducive for her at this stage. Now that her surgery is scheduled for July 9th, there is no way she would be able to go. Sorry Tim.
Her cath, scheduled for May 8th, is when they will go in through her neck and groin to take measures of pressures and take pictures of everything they need to know for the surgery. They are fairly certain her body has developed collaterols. These are those pesky new routes her body has formed for the blood to flow. These are taking the blood in the wrong directions, so they will coil any of these off during the cath.
She also has a dentist appt scheduled for May 31st. The docs have to be certain she does not have any cavities before her surgery. Any decay in a tooth leads directly to the heart which could cause a serious infection.
Gabi is in the process of getting evaluated by our school district. She has an IEP meeting scheduled for May 18th. The school nurse has called several times to make sure they haven’t missed any medical issues. lol. The district is purchasing a pulseox and new AEDs (automated external defibrillator) for each school. I assume they probably needed a good reason to purchase this equipment… enter Gabi. She will qualify for PT, OT and speech through the district. Right now, she receives therapies through a private facility and through EI (Early Intervention).
That’s about it for now. Max has a minor procedure for hypospadia and chordee on his wiener this Monday. April 30th, so we are quite busy. A few prayers for all of us as we endure all of these procedures would be really appreciated.
I hope everyone is enjoying their Spring!