A Lil' Boy's Journey to Live….

Riley had appointments on Monday with both cardiology and pulmonary. First we saw Dr Lin. She was very Happy with Riley’s echo and the labs that had come back. She is still trying to find a way to get dentistry in when Riley has his Cath/Bronch in March. We know Dr Rome won’t allow any work done in the Cath lab but maybe some imagery and get the dentist in there to take a look. There is no way at this time with Riley’s PTSD that he would sit willingly for dentistry.
Before leaving cardiology Dr Hanna came to visit. Riley really misses seeing him when we’re there. Dr Hanna is always just silly with Riley. Today was no exception. Silly as always but he didn’t examine him .. he just played. Making it an ever better visit for Riley. Dr Hanna has already begun saying that next summer Riley is coming to camp with him. The thought of Riley being away for a week blows my mind but it’s also something we’ve kinda been working towards. Riley getting old enough and healthy enough to go to Camp Dragonfly.
After our morning with cardiology .. We spent the afternoon with pulmonary. Dr Kreindler is also very Happy with Riley. Even lower his steroids a little. We discussed Riley’s Cath/Bronch as we had with Dr Lin and the thought is to admit Riley overnight after like we use to. For one because of it being the 1yr Cath/Bronch and it’s a little more involved then the previous as far as some of the testing that is done. Also because of the reactions that Riley has had after more then 2 dozen caths. We have always treated it as a contrast allergy but Riley didn’t have contrast during his last procedure. So now the thought is leaning more towards Anesthesia.
Dr Kreindler is going to talk to Dr Javia (ENT) about closing up Riley’s stoma in his neck. Kinda for quality of life reasons. We would like to get Riley to the beach this summer and for him to be able to run free. Not worrying about splashing sand or water.
Dr Kreindler also mentioned getting Riley’s hearing checked. This seemed a little out of left field but he said being on Lasix for as long as Riley has .. which is his whole life .. It can cause hearing damage. Wow. Never heard that before. Not that it would have changed anything. Riley has never been in a position to not be on Lasix. Although after his Cath/Bronch .. if his BNP is still stable and low .. Riley may get off of Lasix for the first time .. ever.
So overall it was a good visit. We’re still waiting on his Tac level and EBV. Hopefully they are in check and Riley can roll smoothly into being One Year Post Heart/Lung Transplant! Hard to even imagine yet it’s right around the corner.
I will update when we know the lab results and about the other decisions still being made about his procedure March 5th.

~ Remember February 7th to February 14th is CHD Awareness Week! Valentine’s Day has a whole new meaning for many of us. If you haven’t already .. Please take the time to understand why .. ♡♥



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