Wow. I didn’t realize how long it had been since I last posted. So sorry.
It has been a long winter but even the vey few days of sunshine have showed me that we survived and will carry on… what choice do we have?
Gabi is doing OK. In late January, early February, all the kids and myself tested positive for Influenza B. Fevers at 104, breathing problems… scary stuff. The kids were out for weeks at a time. Luckily, we were able to get Gabi on tamiflu really early on and she gets synergis vaccinations for RSV. Between those 2 preventative treatments, we managed to keep Gabi out of the hospital. Thank goodness. She has had a cold off and on since then and her sats continue to be low… around 77. Ideally, they should be mid 80’s. We are watching her closely. She had a check up appt at CHW with Dr. Rao and he wants us to call in her sats on a weekly basis. Unfortuanetly, whenever she is congested, she doesn’t tolerate her feeds well, so her weight is only maintaining, not gaining. But they are OK with this so far. She is not loosing and hangs at about 5% of the weight scale. The fact that she is ON the scale with “normal” children is fantastic, so they are keeping the perspective.
She is happy, and getting around like all toddlers. In the toilet, escaping through the open front door, climbing on the open dishwasher door… you know, the usual things She continues to struggle with walking but she is getting so much stronger. The eating is still our biggest battle. The past few months have really set us back as far as any calories being counted orally. All her feeds continue to be through her G tube.
On top of the flu in late January, I was incredibly sick. Incredibly sick with morning sickness… all day sickness for me. Yes, we are expecting #5 !! Our emotions have gone from: devastation, denial, depression, anger, back to disbelief, shame, embaressment, and we are finally moving into acceptance and excitement. I am due Sept 30. On May 13th, we have the ultrasound to find out the sex and they will also do a full fetal Echo and level II exam.
Gabi’s next appt is in June and they are planning on doing an echo of her heart. The results of this, along with the series of sat reports will help them determine the timing of the next surgery. The fontan can be done anywhere from 2 1/2 years old on up. There is no benefit for waiting until the kids are older. She will be 2 this June, so her next heart surgery could be as early as next winter.
I hope everyone survived this brutal winter and is looking forward to summer. I know I am.
Thanks for reading.