7/28 Update

7/28 Update

More consistent updates can be found on his FB prayer page: https://www.facebook.com/groups/158210648110517/

Gideon had his heart surgery yesterday. He had a complete AV Canal repair and takedown of his pulmonary band. Basically, that means they built the walls in the heart that separate the right and left sides and top and bottom, creating 4 chambers in his heart that he didn’t have before. They also crafted valves to direct and pump the blood to the right places. In addition, they removed a band that had been sewn into his pulmonary artery and grafted a patch for his artery in that place. It was a massive surgery that went better and quicker than expected which was a huge blessing. The surgeon was very pleased with the repair and said it’s unlikely he will need any valve repair in the future.

Now we move on to the post op care and recovery! This is where the real fun begins. In true Gideon form, he was a perfect angel post op until it was bedtime last night. He got hypotensive (low blood pressure) requiring some medication and additional fluids then he lost his P waves (what starts your heartbeat) so they had to put him on the pacer so his heartbeat is now being set by the pacing wires that are still inside him. They also cooled him to constrict his peripheries and let his heart have a bit more of a break to recover for a while. None of this is uncommon for the surgery he had so they aren’t concerned at all. They just removed his Foley catheter, so he gets to pee into his diaper freely and we will just weigh every diaper to monitor his output. Heart and kidney function on echo both look good. His post op EKG was great, normal sinus rhythm so hopefully he will return to that again. He was left with 2 very small holes in between his ventricles so while he does, for the first time ever, have an actual heartbeat, he still has a bit of a whoosh left as well. The surgeon thinks those will close up on their own, if they don’t, it’s ok.

They aren’t going to put the tube in for feeds yet, his system needs to rest and he is ok to go without for a day or 2 post op to let his whole body work on healing his heart. He may get an NG tube tomorrow or potentially try bottle or breast, it depends on his status at the time.

They will attempt to extubate him today. He is still on the vent but only on room air at a low positive pressure setting so he doesn’t have to suck so hard through the tube in his nose to get air. From a respiratory standpoint, he is doing fantastic.

They are closely following his NIRS (near infrared spectroscopy) which were a nightmare when we were in the first time, they are fantastic so far this round. His lactates (lactic acid levels which show the stress level of the heart) are great so far. His blood pressure is good today, partly due to the pacing wires, hopefully partly due to healing and him getting used to his new heart function.

The doctor this morning wants to let him re-warm but they are going to need to keep cooling him because his temp wants to go above 101 which they won’t allow. So he still gets an ice pack “blanket” for today so he doesn’t get above 101 which apparently is normal in this post op state and doesn’t indicate any infection. They aren’t concerned about his temp at all other than wanting to see his heart rhythm and rate at a thermo-normal state to see if his P waves come back.

Prayers for now:

Return of his P waves
Stability with his blood pressure
Successful extubation today
Comfort for him – we still aren’t allowed to touch/hold him and aren’t even really talking to him because he will fidget and wiggle and they want him calm and still without having to 100% sedate him so he is very off limits right now to even talk or touch. ☹
Remain infection free

We truly can’t thank you enough for your prayers, support & encouragement through all of this. While I can’t reply to every comment, I do read each and every one and appreciate you all so much! I have all the scriptures that you sent me printed on papers hanging at the head of my bed next to the pictures of all my boys taped to the wall.

We are hoping for a very quiet, boring day today and more rest for both Gideon and I. There were a lot of people in and out of his room from about 10pm-7am when he settled in this morning so while I did lay in bed, it wasn’t very restful, I could use a good nap today.

Love and blessings to you all!
Kari