Pulmonology...Plans have begun...

Today was a better day. He hasn't had a fever since yesterday morning and he was very happy all day (except when a nurse came into the room). He is definitely feeling like himself. Pulmonology assessed Alexander and had lots of questions regarding the last 4 years of his life. She informed us that there are a lot of test that can be run, but the first test is a high resolution CT SCAN of his chest. He will need to be sedated for this scan and it will be happening tomorrow. He is scheduled for 2:30 tomorrow afternoon. Wes and I are hoping his scan gets moved to an earlier time as 2:30 is a long time to withhold food or liquids (no food after midnight tonight and no more fluids after 5 am tomorrow). Pulmonology believes the problem he is having could be something he was born with or developed when he was an infant, but only time will tell. She also mentioned there is a possibility that Alexander will probably have to go home with oxygen but only require it as needed. So we are hoping that the CT SCAN gives everyone some information on what the next step will be.

Thank you for all of your positive thoughts and prayers. Hopefully we will have some answers tomorrow! <3

Wanting answers now

Less than a week and Alexander is back in the hospital. Last week's results from the cath lab told us nothing. No interventions were needed. They did find that Alexander may have pulmonary hypertension, so they started him back on Sildenfil (medicine number 16 now). While he was under anesthesia, the cardiac team saw Alexander's oxygen saturations go from 94-85, but nce they gave him a little bit of oxygen, his saturations went back up. So Alex was admitted for one night of observation, due to the cardiac team being worried about what his oxygen saturations would do once he was awake. Throughout the day, his saturations remained in the low 90's and while he slept, they dropped down to 87. Since he was below 90, was given some blow by oxygen (a mask lying next to Alexander's face pumping out oxygen-much easier than fighting him with a nasal cannula) and that helped.  He came home on Wednesday afternoon.

On Sunday morning, Alexander woke up in a cranky mood and was covering his right ear. When  I checked it out, I found drainage (again). I told Wes he was going to have to see the pediatrician on Monday or go to Urgent Care today. Throughout the day, Alexander was in a better mood and his ear didn't seem to bother him. Wes even took him to a fire station to visit a friend and let Alexander explore the fire station. He LOVED the trucks! But by 4:00 pm, Alexander had developed a fever. By the time we got to urgent care, his fever was 103. He was treated for the fever, swabbed for the flu (which came back negative) and prescribed antibiotics (again) for his ear. While at urgent care, we learned that Alexander's oxygen saturations were back to the mid 80's (great!). His fever broke 4 hours later.

Yesterday morning Alexander woke up in a great mood. However, the mood didn't last long. He soon became super irritable. Since he couldn't express what was wrong, I had to play the guessing game: "are you hungry?", "Are you irritable because your oxygen saturations are low?", "Are you in pain?", or do you just flat out-not feel well! I called the pediatrician and she scheduled for him to come in an hour later. 9:15 was our appointment and by 9:45 Alexander had a fever of 101, with a respiratory rate of 60 (this is super high). She called the transplant team and it was agreed that Alexander needed to go to the Emergency room at CHLA. At this point, we knew that he would probably get admitted. 8 hours later, Alexander had been put on 2 liters of oxygen, had a chest x-ray done, IV put in, blood drawn, and suction of mucus (to test for certain infections), and was finally admitted to Cv Acute. But oh my goodness! the test that they ran on Alexander and the screaming he did. Now that's older, he sees what's about to come and is listening to everything we say, but can't respond back. He can't say "why momma?", or "I don't like that",  or "It hurts!". It broke my heart! I'm having to help restrain while he screams and he looks at me with sad eyes of "why". It really just doesn't get easier. Some of the nurses have said "Alexander just has a complex heart". HELLO!?!?! He's not suppose to be considered a "complex" kid anymore! The whole point of a heart transplant is so that your quality of life improves! Yet, hereI am watching, my kid scream when a nurse touches his arm, wants to check his blood pressure, or when we have to give him daily medicine. He's so done and that was only day one. :(

From the blood test they took yesterday, we learned that he is fighting some sort of infection and that this may or may not correlate with his lower oxygen sats and ear infection. A referral for Pulmonology was put in and they should be coming by today.  As I've mentioned before; Pulmonary thinks it's a "heart issue" and Cardiology thinks it's a "lung issue". Once Pulmonary assesses him, we are hoping will learn what kind of test need to be run and/or procedures, to fix the problem(s).

We aren't sure how long he's going to be in the hospital. It's going to come down to figuring our the source of his desaturations,  the source/type  of his infection, and what Pulmonary finds.

Prayers and positive thoughts for our Superman. That he continues to be so brave with all of the test, and that we finally get some answers- because almost 2 months of this, is just to long.

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