This morning we packed up and left the hospitality house. We got a room at the Ronald McDonald House (RMH) We had already toured there so we knew it would be nice..but just amazing! Our room is amazing. It will be a wonderful home away from home for us in these coming weeks.
Sweet Baby Shea is still eating and growing and pooping! Man he loves to poop. :) He drank 36 our of 40 ml for me this am. Poor little guy, I had to really wake him up and still he kept falling asleep on me. After feeding him we headed over to the RMH and got settled in. It's great to get settled in some where, unpack, and finally feel like we can breathe on this issue of housing.
On our way into the hospital we talked to our cardiologist, Dr Ohmstede. He seemed very confident in the procedure that was presented to us. He talked to us for about 20 minutes. He also feels confident in what Dr. P. can do and that he won't try to be a "cowboy" What a great team we have!
Daddy gets Shea to down the 40ml like nothing at the 11am feeding. Our nurse Brandy today was awesome. We loved talking and hanging out with her. Again the small world catches up with us. She used to date a guy from Seaford, DE close to where Paul used to live...crazy!
We got a call that Dr. Maxey was able to come talk to us...so we had that conversation. Man, I love our surgeon! For someone who works with babies and kids all day, he is super personable and can relate to adults wonderfully.( I guess my sterotypes come from Grey's Anatomy) We talked through the pulmonary artery balloon procedure....more on this later in the post. He also thought this procedure was worth a try. He shared with us the normal oxygen levels for Shea will be 80iah. You and me live at 100 and if we went below that we would be hospitalized because there is an issue of a blockage of some sort.
So then came in Dr. P himself. We have met him informally but not with Shea being a patient of his. This man definitely loves what he does. He explained the procedure in some of the things that we still didn't understand or things we were concerned about. After a lot of talking, question answering and truths we have decided to go ahead with the pulmonary artery valve balloon procedure.
What is that exactly? Well we have been using the picture below (drawn by the cardiologist on call last week) to talk thru it all. So we will be doing a cath through the top of the pulmonary artery (near the ductus) down into the valve. He will inflate a balloon near the bottom to see if he can expand the artery. (Right now it's too thin and it won't allow the blood to flow correctly) We will not know if the procedure is successful until they wean him of the medicine that he has been on the past week. (That medicine has kept his ductus open and letting the blood flow)
It's possible that they won't be able to open the artery with the balloon. It's possible that they will be able to open it but it still won't be enough. (Then we get the first open heart surgery called a BT shunt ) It's possible the balloon works but the ductus doesn't close on its own. (Then we have another cath to close the ductus) They may also have to go in and put a stent in the ductus.
Basically the variables are numerous. However this procedure won't hinder or affect his chance at getting the BT Shunt. So if this doesn't work, we will have the BT shunt. It was pretty much a lot of information. But if we do nothing our Sweet Baby Shea won't get better on his own. We have to do something. I'm too in love with him to let him go!
One of my parents this year, the same wonderful one who threw me a baby shower, started a go fund me page for Shea. So thoughtful and helpful...thank you Jennifer!!
Big thanks to Darci for visiting and bringing us dinner!! It was so wonderful to see you :) and we know Shea loved showing off for you!
Super big thanks to my parents for bringing the dogs up to see us. Even though they weren't too thrilled it warmed our hearts.
Ginormous thanks to Sheila for taking our dogs to her house for the rest of this week!! 4 dogs is a lot and you are super brave to take this on for us.
Tomorrow at 8:30 am Shea will go down for this procedure please keep him, Dr. P, and all the staff in your prayers and thoughts.
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