I'm hoping that you all know by now-no news is good news and that we are just super busy with our Superman. Alexander came home from the hospital on October 14th and with everything resuming the following week (speech therapy, occupation therapy, physical therapy, and school). He went to the pumpkin patch and had a BLAST trick or treating on Halloween.
A few days prior to Halloween, Alexander developed a cough. He had no other signs but the cough. After taking him to his pediatrician, we were all in agreement that he was having some allergies that were triggering the cough, as he wasn't coughing anywhere else, except when he was home.
Around Halloween, I caught a cold and kept my distance from Alexander. 4 days after Halloween, Wes got sick. 2 days later, Alexander got sick (luckily I was better by this point). He started with coughing more frequently and running a low grade temperature for several days. By day 3 of the cold, his oxygen saturations were running on the lower side than his norm and he was requiring 4 liters of oxygen (his norm is 3 liters). After talking with transplant about his condition, we were told to bring him into the ER at CHLA. After spending 6 hours at CHLA and having Alexander's nose swabbed for a culture, they sent us home. I was fine with going home, as there was nothing different the hospital was going to do that I wasn't already doing. The following day we learned that Alexander has ParaFlu. ParaFlu is a cold that causes Croup. This cold is crappy because Alexander can't get a transplant while this virus is in his body and the virus can take 4 weeks until it is gone. :(
As the week went on, Alexander had moments of being energetic to moments of exhaustion. By Friday night, we had to increase his oxygen to 4.5 liters as he was barely staying about 75%. His cough was very frequent that night and we thought we might have to bring him into the hospital. Now that he was on 4.5 liters, we didn't have much more leverage before he had to go to the hospital (our concentrator only goes up to 5 liters).
The weekend went fine but then on Sunday night into Monday, Alexander's oxygen levels began hanging out 77% at 4.5 liters-this is not his norm. His norm is 88-90% on 3 liters. Something just wasn't right with Alexander. I once again, updated the transplant team about Alexander and they started to think that perhaps something is going on with his heart and that the cause of the low oxygen levels might not just be from his cold. They suggested we bring him into the Emergency room, who will check him over and then have him admitted to ICU. The transplant team would then talk about starting him on some heart medications. I was told that if it was heart related, then heart meds would need be started (via IV drip). If IV meds were started, then he would be staying in the hospital until he got a new heart. Slightly freaking out, I quickly packed up mine and Alexander's bags (Wes had to stay home as he is still ill with pneumonia) and we headed to CHLA. A few hours later, we were in CTICU and his sats were GREAT and all night they were GREAT! What the heck!? Because his sats were so great, he didn't have to be started on any IV drips (hooray!!).
During rounds this morning, a blood draw was ordered, a chest x-ray and an echo. The results of the x-ray and echo have not come back yet, but his blood test showed that his hemoglobin was low (perhaps from his Cath last month and the virus he currently has). He is currently getting a blood transfusion that we hope will help increase his oxygen saturations and get over his cold quicker and go home.
With that, we will see what tomorrow brings. As of now, we wait and observe. Observe how low his oxygen saturations drop with activity; observe how his oxygen saturations are when he is relaxed, and observe how frequent his cough is.
I have a love/hate relationship with this time of year. I love the holidays but I HATE flu season. A minor cold has landed Alexander in the hospital. This hospital stay is just another reason why Wes and I, as well as, our family are so careful with where we take Alexander and what we expose him too. Please keep the prayers and positive thoughts coming that we can get a better understanding of why his oxygen saturations are riding a roller coaster. Is it heart related? cold related? or both?...
It's a been a little bit of time and I was actually going to write a blog update this weekend. Plans changed. 10 days ago, Alexander was discharged from the hospital (the Friday before Thanksgiving). He's been looking great, had a wonderful Thanksgiving, and returned back to school and therapy this week. He was super happy to get back in our "normal" routine, as was I. While Alexander was in the hospital, he was bumped up from a status 2 to a status 1B. This means he's not critical that he needs to stay in the hospital, but that he will need a new heart sooner than later.
