Cruising along through summer. Hope everyone is enjoying the warmer weather
Gabi had her check up appt in Milwuakee on Monday the 27th. We now see Dr. Cava, since our beloved Dr. Rao moved to Phoenix. We know Dr. Cava well from Gabi’s hospital stays. He hadn’t seen Gabi in clinic in over a year and he admittted he was quite alarmed with the lingering fluid around her heart, the size of her heart and the “leaky valve” issue. At first glance he thought, these issues seemed to be much more severe than he remembered. However, when he compared the results to her previous history, he was put at ease a bit because the results are pretty much the same.
The leaky valve (tricuspid regurgation) can be repaired during the next surgical procedure, the fontan. The fluid around her heart is not normal. His only thought was that she lacked enough proteins in her diet. In her lab work, he ran an albumin test to see if she was low on protein. If a body is low on protein, fluid can accumulate anywhere in the body. I remember when she was fresh out of surgery and looking bloated, they would give her albumin and she perked right up. The lab results show that her levels are normal.
He recommended that we wait for the fontan until next spring/early summer. But he does want Gabi to go into the cath lab (catheterization laboratory) in the winter. This is where they will insert a catheter inside the artery via her groin and be able to go up into her heart to repair necessary things. This can also measure arterial pressures and obtain great information. Her O2 sats were really high, at 89-90. Sounds great, right? Not so much. This means her body is forming collaterols, new pathways to and from the heart. The blood is developing these tiny little pathways to where it’s not supposed to go. During the cath procedure, they will coil these off.
They need her to get bigger and stronger before the next surgery and she does have plenty of time but basically the eating thing needs to improve. She is 100% on a liquid diet of pediasure that she gets via g tube. She tries and loves to eat, but can’t swallow. If the food goes back into the back of her throat, she gags and throws up. There is a 2 week inpatient feeding clinic that we are considering.
It’s always a realty check when we have an appt. We treat her like a normal kid and she tries to just keep up with everyone. I never forget about her troubles, but we try to lead as normal a life as we can. And then to hear the severity of her conditions always makes me shed a tear. However, she is with us and smiling everyday! And for everyday, we are grateful to have our wonderful Gabrielle!