Wow. It’s been a busy, crazy few days at home and I apologize for not posting sooner.
We got home Wednesday evening and Gabi was really fussy and uncomfortable. I thought she would be so happy to be home, she was but she was just miserable. The first night in her bed did not go so well. She was up all night long whimpering and crying. she would fall asleep for brief moments and then awake with a start. I didn’t know if she was in pain or in fear. I asked a few other heart moms and Carol, our cards nurse, and they all told me that a lot of times, the kids are just really traumatized for a period of time, suffering from nightmares and just general anxiety. so sad. The next day, she wouldn’t sleep and she was just really uncomfortable. Then the diarrhea started. And things went from difficult to worse. I called the cardiologist and of course, reached out to my trusted posse of nurses, and they were attributing it her new formula. It is called Vivonex. It is predigested and low fat. She needs a very strict low fat diet for 8 weeks following the fontan to avoid any plural effusions (fluid building in her chest).
I talked to our dietician in CHW who has been with Gabi since birth and she told me to start with simple fixes. We added 10 grams of fiber to the formula and we waited and hoped she didn’t get too dehydrated. She is on 2 diuretics and with diarrhea, there was quite a concern there. The benefiber did nothing. Her poor behind was ripped to shreds with terribly severe diaper rash. I started to giver her less and less food because I knew it was just a vicious cycle. More food= more diarrhea.
We waited it out until Monday, our follow up appt. The nights that preceded the appt were much the same: she was up all night long tossing and turning. She was crabby during the day, exhausted and wasn’t getting up off the couch, like they wanted her to be. Monday morning, she fell asleep on the way to the hospital and about 10 minutes away, I wanted to give her a warning before we just pulled up the dreaded entrance of CHW. I said, we’re going to go see Dr. Cava, he’s going to listen to your heart and then we’re going to go home. The look on her face almost made me crash. She silently cried until we pulled up to the entrance and then it wasn’t silent any more.
Labs were first- horrendous. Chest x-ray was next- not as horrendous, but she was still terrified. Then off to Herma Heart Center to see our friends. Carol did an assessment and agreed that something needed to happen with this formula. She also told me that the stitches that were in those chest tube scars should have been taken out before discharge from the hospital and now they were completely scabbed over. great.
Dr. Cava was awesome! 4 of us pinned her down and he dug out the stitches. this was all following the general exam of course. But labs looked great. Her INR level was at 1.7 and it should be between 1.5 and 2.0, so it was perfect for now. Platelet count was up to 150! Her CBC was a still a little askew but all to be expected. her chest x-ray looked great too. All fantastic news!
Dr. Cava explained to me that there was actually no scientific proof of the low fat diet working. This is a new trial they are running to see if it might help stop chest effusions. And actually Dr. Cava was the one who implemented this new trial! He agreed that she needed to come off this formula. He was going to put her on a higher fat formula, but not as high as Pediasure, her usual formula. It is called Pediasure Peptide. He said without any proven evidence that this works, he couldn’t justify keeping her on a diet that didn’t agree with her. The risk was worth it. (let’s hope so!) He tweaked some of her meds and then we waited for Julie, our wonderfully amazing dietician.
One of the nurses brought in 2 cans of the Peptide and I asked for more and she looked at me like I was crazy. Then Julie came in and said, “that’s all they gave you?” She ran into her secret lair and brought me a whole box with a script for more. She’s the best. We went through the new regimen and she told me to keep her NPO ( no food) for a good 24 hours. We were to give her Pedialyte and some oral feedings if she claimed she was “hungry”. Wouldn’t you know it- she was SO MUCH HAPPIER!! It was the food all along that was making her horribly uncomfortable. Her poor little tummy must have been so upset and her bottom was tortured.
I just started the new formula at noon today, so let’s pray for no diarrhea. Because of this higher fatty food, she is at a higher risk now of having effusions, so we are on high alert. The only ways of knowing are if her breathing rate increases and if we want to get crazy, we can weigh her everyday to check for a jump in her weight that might be fluid.
She was only up once last night!!! She is like my Gabi now, only weak and a squeaky voice. But with some rest and her tummy feeling better, she is much happier. She is up walking around and wanting to play again.
Thanks for all the support, dinners, babysitting, visits, wine and kettle corn (it’s the little things!).
Love to all,