Alex

The last 24 hours have been a roller coaster ride with Alex. We were told yesterday that his pneumonia has worsened, instead of being in just the right lobe, now its also in the left and he sounds even more congested with every breath. They bumped his oxygen level back up and continue to do nebulizer treatments, antibiotics, humidifed tent while he sleeps but while they say things have gotten worse, there is not really more that they can do at this point but let his body recover while they try to protect his lungs from infection with the antibiotics. The hard work has to come from him to cough the junk out of his lungs. We have been worried and feeling discouraged and it was not a great night.

Worse, being in the hospital with your sick baby, separated from your spouse or anyone really to talk to for hours on end lets your mind go to dark places. Between all the needs for monitoring and caring for Alex, machines beeping for completed IV treatments, or need for new ones to start, and even beeping just because there is a kink in his IV line day/night, well it was a VERY long night and very little sleep. Not the best combination for clear or peaceful thinking. Were only on day 4 but every day here somehow feels like a week. (thank you to my family and friends for all the notes and visits and prayers, as always you're helping us get through another stressful time and we are so thankful)!

Today is a new day and better, still a little bumpy ride but Alex is acting more and more alert, happy. The doctor said this morning he didn't sound any better in his lungs but not any worse either. His oxygen falls to the low 80's and even high 70's several times today and needed to be reminded to cough and he just sounds terrible at these times and I worry he has to reallly struggle to breathe. Its so hard to be patient when I want to him breathing to be easier for him right NOW. Even with all the treatments, there is no quick fix. They remind me that even with a healthy adult, it takes several weeks to recover from a bout of pneumonia so with Alex it is expected to take many weeks. They describe healthy lung tissue like sponges but because of Alex's lung disease and scarring, his are really stiff even normally. He has to work really hard at getting all that congestion moving out and not just moving and getting plugged in another spot in his lungs and its just going to take time for him to be able to clear it all out. Sounds like there should be a better way but I remind myself that he is incredible and he will get through this like he has done with every other obstacle in his way, like a champion!!!!

I love our pediatrician and while I sometimes feel quite discouraged after listening to some of the doctors at the hospital, she always is so positive and makes me feel much more hopeful. She also KNOWS Alex the best and knows us as parents and that we would do anything for our sons! She reminds me that his body needs to heal and the number one thing is for him to get the rest he needs, not exactly what he can get in the hospital. So the number one priority is getting him home back into his routine, sleeping and out of the hospital as soon as its safe and away from other potential illnesses at the hospital. Mark and I ofcourse whole heartedly agree. The main things to accomplish this are to get him eating again, switching over his IV's to oral medications and having his breathing not be so labored. We can go back to managing his oxygen at home, nebulizer treatments, etc. We were sooooo close to having him off of all of this and I am confident we will get there again!!

He's doing a bit better with bottles today and did switch over to oral medications which is great. They also got him an exercauser which he loved so he can be upright and moving around more. He tired really quickly but it was so great to see him enjoy this!!! I'm pretty anxious about his breathing and desats but I'm praying that this will even out very soon and we can get him home where our whole family can be together again.

I'm sorry if this is scrambled, people have been emailing asking for updates and I wanted to get this out before the night is over. I'm sorry neither Mark or I have the energy to call or even email individually right now, we are just literally running back and forth to and from the hospital to each take care of our boys. Thank you for all your continued prayers, I definitely feel them working!!!!