Overall Colby is doing better. Say it takes, on the average, for someone to get over the flu in 5 to 7 days. For Colby it will take much longer b/c he also has to deal with the pneumonia and effusion. Yesterday we had decided if Colby's xray wasn't any better he would have a broncoscopy done. He must have heard us haha, because this morning his xray finally showed a little improvement. We decided to not do the bronc today, which suited me just fine. The less procedures we do to Colby and the more he can kick this on his own, the better off it will be. Even though his xray was better, I could tell something was wrong with him this morning. He seemed to be uncomfortable and his heart rate was way too high, 130 to 140. So I had some ideas and was determined to hold my ground and fight with the docs to get these changes made. The attending dr came in, I expressed my wants and concerns, and viola, she agreed with me. Really? I was all geared up to throw a hissy fit, but I'll save that energy for later I suppose.
They had Colby in a mode on the vent that would give him a set tidal volume, which they had set too low to begin with, and Colby would determine the pressure rates. It made no sense to me why he was on this mode, as we didn't use it last time he was in the hospital. So they agreed to switch the mode. I also wanted to cut back on the Lasix, they agreed, and it's down to 2x daily. I also wanted pulmozyme used from 1 time daily to 2 times daily. SMA FAMILIES: if a doc or hospital ever tries to tell you pulmozyme is for CF patients only, tell them they are full of shit! It doesn't work on every SMA kid but does some, so don't be afraid to try it. This is the 1st time Colby has used it and I do think it's helping. And just to be on the safe side I requested cultures be taken so if Colby has any nasty bugs growing we can start treating them sooner than later.
We're also trying to get Colby's surgeries scheduled, since he is currently intubated. I think some people are confused. Before Colby got sick and admitted to Cincy, I was in the process of scheduling surgeries for him to have over spring break. He needs 7 baby teeth pulled and I figured since he would be under, why not go ahead and have the ascended testicles surgery done. Now, after this hospital stay, I have also decided to have a port placed for Colby. This will allow for IV access whenever we need it. We got "lucky" this tme and have been able to stay a step ahead of his illness (sort of) but that is not always the case. After 2 failed PICC line attempts, I was like yep, something has to change. Oh goodie, one more thing for me to learn.
That's it for today. I look like crap. I feel like crap. I'm tired, grumpy, sore from sleeping on a horrible excuse of a bed, tired, didn't get a shower today, worried, tired, frazzled and oh yeah, tired. After 9 years of coming here, we finally got smart and we're giving the Ronald McDonald House a try. We now have a room there and as long as Colby is doing this well, I'm going to go over tonight and give it a try. My mommy brought me roast, potatoes and carrot for supper. I'm very excited about that. Real food! If this update has a bunch of typos in it, sorry. I'm typing on Colby's tiny iPad keyboard and I'm too lazy to proofread. At least I can admit it! Bye for now.
No comments:
Post a Comment