Monday, May 20, 2013

Dazed and confused... hospital stay #18

Not even a month after our last stay we are back at the hospital. This is getting ridiculous. We are still exhausted and barely got our old rhythm back. Also, we had finally convinced hospice that IV fluids are good for Jagger and he needs them on occasion( took about a year of convincing), they came out last week to do a treatment. But as with everything else nothing is ever simple or without argument and we ended up at the hospital again anyway...argh. I am not going to go into a lot of details but sometimes I do think we should write a book about our experiences. So long story short, the treatment they had proposed was extremely excessive and actually very dangerous considering Jagger's heart condition. Sebastien and I are not stupid and do not blindly agree to things just because it comes from a health professional. So we did some quick research to confirm what our gut and intelligence already told us which was not to proceed and right we were. So we refused unless they did things our way which also was the right thing to do from a medical standpoint. I wanted to mention this as it is just one of many examples where Sebastien and I decide and advise health care professionals on Jagger's treatment plan and not the other way around even though we are not the ones with the medical degree. And to all those folks who read the blog and who do not have sick children to care for I just wanted to explain the difficulties and complexities we face every day and that we literally CANNOT ever relax or take a break! We have to make life or death decisions even at 3 am completely exhausted and sleep deprived.

Back to the hospital stay. Well once again pneumonia ( or so we thought because thats what they said in the ER) and back to the ICU. His white blood cell were at 27,000 that is the highest we ever seen with Jagger (normal for Jagger is usually below 12,000), so we know something was not right! They were going to send us to the regular floor but once we mentioned BiPap it was either the TICU or ICU. TICU was full so we ended up in the ICU which was actually a good thing. Turns out that he was starting to have lung failure/ collapse (atelectasis). Once again you have to love the inconsistencies. ER said pneumonia. ICU said : "lungs are collapsing we need to do BiPap as much as possible and have you thought about a Trach". Internally I was screaming: "WHAT, Trach?? Are you serious? " I am not prepared to have this conversation yet and I don't want to think about it. So we focused on the BiPap. Kept him on it for 12-15 hours round the clock. Even when awake. Of course this was a huge change for boo as he barely used it at home. Even though we had it and tried it a few nights here and there, we were not consistent and let him dictate. He has sensory issues and doesn't like anything on his face except for our kisses. Well those days are over. From now on 6-8 hours minimum every night! At the hospital boo did quite good but he was also too sick to fight so we were able to do BiPap between 8-15 hours every day and repeated X-ray showed significant improvement which mean that for now the bipap is working and extending his lungs to make it easier for him to breath and less likely to get pneumonias.
Once his lungs looked better for a few days and he was tolerating his feeds we were able to go home.
Let's hope this time we can go a little longer between hospital stays.