Home and Updates!
Let me start out by saying: As of 1pm today- WE ARE HOME
It has been a while since we posted. In the last weeks Paul has been doing wonderfully with his Nissen and GTube. We are slowly and steadily working things so he can eat more volume more quickly. He is gaining weight like a champ and is so interactive with everyone. He has been off IV diuretics but did have a minor event on telemetry that set us back just a bit. He had 4 total wenkebach alarms: 3 on the 12th and 1 on the 19th. This is second degree heart block in the first degree which sounds scary, but it is likely if you are reading this you have had it before (we just are not monitoring you 24 hours a day)! Wenkebach is almost always a benign condition for which no specific treatment is needed and medicines for heart function, like digoxin, can cause Wenkebach and so digoxin was stopped as soon as the alarms happened. There is nothing to do right now but monitor him with a halter monitor in a few months to make sure all is ok.
With every echo, Paul’s heart function is getting better. It is now characterized as “mildly depressed.” So, it is not perfect or normal but it is getting better on its own even without the assistance of medicine to help it. So, at noonish today we got our walking papers and made our way HOME. It will be an adjustment for all of us to be home and it would not be unheard of if we eventually had to go back to the hospital for late blooming complications but for now we have orders to: “live your life.” For the next three weeks, we will be staying home just like we did in the interstage period. The same rules about hand washing, staying away with sickness, and being careful around children apply and will for the rest of Paul’s life. However, Paul is really looking forward to a more public existence.
We are looking forward to the zoo, the pool, walking outside, going to church, and visiting with friends and family this summer. We are also looking forward to the return of our beloved dog, Ruby. For those of you who don’t know- Matt Melchiorre, April and Bryan Adams, and Chandler and Christian Todd have all helped with Ruby since December. Matt moved in for several weeks when Paul was born, April and Bryan have kept Ruby at their house from the end of January until this week and Chandler and Christian are taking her on while we get settled this time around. To say that we are GRATEFUL does not do this justice. It is incredible to have such wonderful friends and family.
We appreciate you all and hope you are celebrating right along with us! We will keep you posted on progress. I hope to be writing more about normal baby things very soon! *Spoiler Alert* I think there are some teeth coming... Below is Paul in his carseat and as you can see he really is chunking up!