24 days ago- A lot has occurred

 It’s been quite some time since my last post and everything had been going well until a few weeks ago. In the last 24 days, there has  been a trip the emergency room, several follow appointments with pediatrician and heart transplant team, an urgent care visit, and a 911 call. 

24 days ago we learned that Alexander's oxygen levels were sluggish, hanging out in the 80’s. We (cardiac/transplant team, pediatrician, and us) had been thinking Alexander had asthma due to his cough that he's had for months because his chest x-rays were showing ‘normal’. 24 days ago, I took Alexander to see his pediatrician due to his cough getting more frequent. It was then that we discovered his oxygen levels were at 88-89 percent, with a fast respiratory rate. His pediatrician was very concerned and sent us to the ER at CHLA. While there, his oxygen levels never dropped below 90 but couldn’t stay any higher than 94%. A chest x-ray showed no changes from the previous month visit and a breathing treatment was shown to help with his fast respiratory rate. The following day, Alexander’s  therapist mentioned that he was looking a little blue and breathing fast again. I checked his oxygen levels and was getting a reading of 83%. SO I called the transplant team and they increased his prednisone dose from .5 ml to 3 ml for 5 days. We all thought that would help his asthma/bronchial spasm. Within those 5 days, his oxygen level jumped up to 98%-it was great! Then a few days after the 5 day course ended, his oxygen levels dropped. On Halloween night, Alexander had no interest in trick or treating and was very unhappy. Once he was asleep, I checked his oxygen levels (I always get a better reading because he’s not constantly trying to escape from me) and it showed him at 75-77%. This led to a 911 call who sent the fire department out. Their pulse ox showed him at 91%. Mind you, he was awake and angry by this point. The fire department told me something was probably wrong with my pulse ox and to get a new one. They asked if they should bring him to the hospital or decline the trip. I declined, as he clearly wasn’t in an emergency situation. I did talk to the transplant team that night and it was suggested that we bring him back to clinic in 2 days to run some test. 2 day later, the transplant team watched his oxygen levels go from 91-84 percent! Alexander wasn’t doing anything but playing games on my phone. 84 percent!!  He’s not suppose to be that low with a normal heart function! We aren’t suppose to be worrying about how low his oxygen levels are anymore! That's suppose to be in the past- So what’s going on?!? Alexander has stumped the cardiac team once again and he will now be going to the Cath lab tomorrow morning! 

IF that wasn't enough, the follow day we had to take him to urgent care because he had an ear infection- poor guys ear was draining fluid  and he was in extreme pain. Luckily the urgent care visit wasn't more than 50 min and we were the only ones there (2 perks!). 

Tomorrow morning, we have to be at CHLA by 5:15 and his procedure is at 7:30. It is his annual transplant catherization. This procedure wasn't suppose to happen until the end of this month but because something is going on- we need answers now. So tomorrow, the cardiologist will assess Alexander’s coronary arteries, his pulmonary arteries, the pressure in his lungs, and take a biopsy of his heart to check for rejection. There is a 50/50 chance that some sort of intervention will be needed (i.e. stent, angiogram, coil collaterals). Wes and I REALLY want answers. We’ve just about ruled out asthma, as it’s just not possible for someone to have oxygen levels drop into the 80’s during a full blown asthma attack. We also suspect that his O2 problem has been going on for awhile, but because the signs weren’t 100% clear and having low O2 isn't suppose to be a problem anymore, we didn’t bother to monitor it. Until now…

So other than the crazy few weeks we had, Alexander has been doing well. As I mentioned, Halloween wasn’t great; visiting the pumpkin patch wasn’t great, but everything else has been going well. He’s really wanting to talk and has made some really great progress with his language. He can now say: stop, no, off, on, in, momma, up, oh no, uh-oh, shoes, and toes. He’s getting stronger every day and is finally mastered jumping up and down and is super close to mastering jumping forward. 

We've taken him to Magic Mountain a few times, which he seems to enjoy. We also took him on his first roller coaster-which he wasn't a huge fan of.. 

Prayers and positive thoughts for answers tomorrow would be most appreciative. We want answers for why he's having low oxygen levels and hopefully won't need to seek out another specialist. Prayers Alexander's recovery from the procedure will go smoothly and there will be no bumps during the procedure. Here we go again...<3