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.