6/4 update

Good evening everyone!

We have a two day update as I was at work very very late yesterday and couldn’t formulate a update last night so here’s what we have for two day.

Day 1

Ice, no medication. 

-gained 90grams 

-they don’t think it’s acid reflux related with his secretions 

-doing dexamethasone drops for his nasal airways, if that helps then they have their answer and would talk again to ENT 

-oral secretions may also be from his feeding tube, so they are also talking to general surgery to talk about the feeding tube in his belly. Just to start the conversation. 

Had a episode of SVT for 3 minutes and was settled by one does of the medicine.

Cardiology came by, they said they will keep trying to increase his sotalol dosage and doing it 3 times a day instead of 2 times. They have also come up with the diagnosis of Wolff Parkinson’s White for the reasons of his SVT. He got lots of snuggle time and is just chilling.

Ablation is usually around school age, they prefer them to be larger but it can be sooner if medications don’t manage it 

Day 2

-down to 21%, continue to ween oxygen 

-continue trying to get his sotalol dose increased, he’s currently under the starting dose. 

-may shorten his feeds to 45 minutes based on his glucose levels 

-general surgery said he is a candidate for g tube, still talking about when that will be

-cortisol labs looked good for his age 

-lost 50g of weight.

The doctor came by and said they need imaging of his stomach first, basically a dye that goes through his system so they can make sure everything is working properly then they can make a plan for the tube. 

She couldn’t give me any estimate on when that work happen or the tube. 

Surgery just stopped by, he said they need to talk to cardiology because of the SVT because surgery can cause him to go into SVT. 

I signed consent for the g tube but that’s just saying he discussed risks and all of that with me and authorized them to give blood if needed but it’s laparoscopic and they never need to use blood

We wait to hear from cardiology on the g tube 

Here’s what has been going on for the past two days. We have some surgeries potentially in the very near future. We will need all his warriors for these next couple days.

Thank you so much!

Walker, Brandi, Tyler, Glamma Janet

Comments

Post a Comment

Popular posts from this blog

Very early May 13th

Image
Good evening/Good morning! Walker first full day in this world was a day of tests. Started the morning with an attempt at a pic line IV for him have better access for meditations, and things that will help with his sugars, electrolytes, and salts. Also with the IV he has right now we aren’t able to hold him with the placement of it. It is not in very far. That wasn’t successful due to how windy his vessels are. After that he got an xray to check on how his lungs and they are clearing up! Fluids are starting to leave and let him use his lungs. After that Brandi came down and checked on him and got to spend some time with him she has been absolutely amazing with getting him the nutrients that he needs. We let the doctors come in and do an echocardiogram on his heart and do some imaging. At this time his blood sugars had started to level out yesterday very low and this morning very high so that was a win! we all went upstairs and let the doctors check on Brandi and make sure she is still ...
Read more

Good morning! 5/13 morning update

Good morning everyone! Yes we have all slept. We will start with that. I wanted to thank everyone that are enjoying these updates. This is so much easier for us to post here and get the information to everyone rather than individual texts to everyone. I have made comments open as well and we are reading them on here. Thank everyone for your support. Recap: Last night after we got here to children’s they started right in giving him the best care and wanted to get a picc line established. His first two hours here we were successful on that getting put it! (Huge win!). After that it got pretty quiet in the room with him, Brandi was updated and FaceTimed with him and we all went to sleep. He did have a few people check on him throughout the night but was really quiet, happy he got to rest as well! while we were asleep at children’s Brandi got the news that they are starting her discharge today, started around 5 am now almost 10 and close to being out of there (we do know that it takes quit...
Read more

5/11 morning update. Happy Mother’s Day!

Image
Good morning everyone! First I want to say happy Mother’s Day to all the moms out there. Want to give a big shout out to my mother Janet for being the rockstar that she is! She has been doing everything she can help us with everything. Second my wife, Brandi you have shown you are ready for motherhood and you are one of the strongest women I have ever met, I am beyond proud and privileged that you are the mother to Walker. You are killing it! Now the update you all came here to read, it has been an interesting night! Last night the nurses came in to do the last monitoring session of the day for Walker and the little guys heart rate has gone down! Went down to much! Was at 90-98 so he had everyone pretty freaked out and had every doctor from the OB on full alert, we gave him some time watching him on the ultrasound and his heart rate came back up to normal rhythm. With this the little turkey caused another room changed at 12:30 am. We are now back down stairs on the labor&delivery l...
Read more