Where do I start? This winter has been so hard on us, I mean really hard! Last Friday, January 11, Bo woke-up a little cough- nothing major- just a cough. As the day went on he was gradually going downhill, acting tired, acting different. By 2:00 he was hardly moving. I checked his temp and it was 100 which was unusual for him. He rarely has a fever but 100 was not terrible. By 3:15 he couldn’t walk or even get up. His temp was 103.9 and his 02 level was 70% (which is terrible) and he was also breathing around 80 reps a minute and I was kind of starting to freak out. Luckily, my father in law as at my house. I called the doctor and we were headed to KU Med. By the time we got to the hospital, around 8 minutes away he was in bad shape. When we walked in the door his 02 was 61% and the temperature under his arm was 104. They took us straight back and accessed his port and started pumping him with fluids…and from that point on it slowly got worse! They started him on albuterol every 6 hours at first and each day he got worse. By day 3 he was so bad he was on a continuous albuterol treatment which meant he had to keep a mask on for 15 hours. It was terrible. He was so sick.
By the 3rd day we knew he had pneumonia and RSV. They started him on 3 different antibiotics and told us if things didn’t get better soon they would vent him (!!!). I, of course was not at all ready for that, venting Bo is very risky because he already has a very compromised airway from being on the vent in the NICU and from all of his other stuff. (Hopefully with in the next month he is getting a bronchoscopy to see what is going on with his airway.) We were moved to the PICU where they gave him some magnesium to try to force his lungs to open up!
The PICU is where my brain went from “poor me” to “Wow I am so blessed and lucky it’s not worse.” I was able to lay next to my very sick baby boy, but he could still look at me and give me his little smile every once in a while. I could see how dark brown his little eyes were, I could hold him and comfort him the best I knew how. It was the most surreal thing I have been part of in a long, long time. I thanked my lucky stars every second because I knew it could always be worse. We spent 3 days in the PICU were Bo was finally starting to act a little like himself.
After 8 days in the hospital he was ready to come home. The amazing Cathy taught me how to access his port at home. It was scary but I did better than I thought I would.
I clearly didn’t give all the yucky details of our week, it was very long and very scary but right now he is okay and home! I have no idea what is next for us, we have a meeting with our team of doctors to see what we do next. Since Bo produces no T cells, IVIG isn’t going to do anything so why do an extra procedure? Not only that we aren’t sure if he will even be able to handle it without going into shock because he can’t handle the blood… We are hoping to have some sort of plan soon. Bo is going to have his tonsils and adenoid out but I am not sure when. Right now he has to get over pneumonia and get better. The doctor will not put him under general anesthesia until he gets the all clear. I will keep you posted!
Here is what I do need to say: THANK YOU. The support we have received is amazing. The people who support us are unbelievable, truly. Thank you everyone who has brought dinner and are bringing dinner. It helps in so many ways! Bo received an amazingly BIG box from some wonderful people far away at Paramount Pictures and, let me tell you, he was in love with it! Melman the Giraffe has yet to leave his arms. We couldn’t do the things we do without the help of all of you. My parents and John’s parents- thank God they all live here and close. We wouldn’t know what to do with ut them. Les, Lisa, Christy, Shawna, and Tina: I have no idea what we would do without your help and constant support, thank you!!! So many, many more I couldn’t possibly name them all so thank you!!! Thank you! Thank you!! Thank you!!!
C