It's been a really rough week in our house. Parker has been sick. Pretty darn sick in fact. We spent SIX hours in the ER on Sunday evening and SIX hours in the ER overnight on Monday. We then spent the late morning on Tuesday at the pediatrician's office. No one was really able to figure out what was wrong because he had symptoms all over the place but had no fever and his bloodwork looked pretty good. The symptoms were mostly respiratory based and he was having a hard time breathing and the treatments I had available at home were not cutting it. That's why we went to the ER twice but they really didn't do anything to help except give him shots of Rocephin (which we now know were for nothing), more breathing treatments, and did chest x-rays (which didn't look to bad). Turns out my little guy has RSV. He has been getting monthly injections to help prevent RSV and I guess it's good because otherwise this whole thing could've been a lot worse. We all think the "croup" that Alexa had a couple of weeks ago was probably RSV too and that's just what it looked like in her. So...we likely gave her a 10-day course of antibiotics for no reason.
We've been spending the past several days suctioning like crazy, doing lots of breathing treatments, chest percussion, and cuddling. Yesterday morning was probably the toughest for me because I was alone with Parker and I was unable to get his oxygen saturations up where they needed to be. His lips were dusky blue in color off and on and although I didn't think we were at the stage where I needed to call 911 I sure didn't like what was happening. It was frustrating because nothing I was doing was helping. I turned his oxygen way up, gave him breathing treatments, did his CPT, was suctioning a lot, and even did an emergency trach change. I couldn't figure out what the problem was but then he started to come up where he needed to be and all was fine. Sometimes I think he just gets bored and wants to add a little excitement to the mix (just kidding).
To add to it all, on the way out the door for church on Sunday, Alexa fell and hit her head on one of our end tables and instead of going to church we went to get five stitches put in her forehead. That was sure fun let me tell you. She was actually a trooper for the whole process except for the actual stitches going in part. I'm quite sure people two blocks away could hear her screaming! I'm not looking forward to when they have to be taken out.
Today is going much better for Parker and I've had a chance to breathe. Our lives are a roller coaster and this last week we were coasting down but we're definitely on the way back up today. I've gotten two pieces of wonderful news today and it makes all of the craziness a little easier.
First, I spoke with Parker's Pulmonologist's office. His biopsies/cultures from his procedures came back and did show Pseudomonas (the bug Parker always has in his trach) and RSV. But it also showed no signs of aspiration. This is beyond HUGE news. This means we can attempt oral feeding trials again and I don't have to be so scared. Now, I do know that Parker has aspirated in the past but since he has been tolerating his PMV (speaking valve) better, I have hopes that we will be more successful this time.
Second, I found out today that the nursing hours we receive so we can sleep at night will NOT be cut. They had been proposed to be eliminated completely. This is only the case for the next fiscal year but we will take it! This has been a huge stressor for us and a big burden was lifted in hearing this news.
This decision had been made a few weeks ago, but I didn't find out about it until today. I think hearing this good news today was perfect timing coming off of such a hard week and I'm able to appreciate it so much more. Without having the night nurses here during Parker's illness I probably would've gone crazy. He requires constant care on a good day but when he's sick like this you can't take your focus off him for a minute and it's just impossible to do 24/7 by yourself. We definitely would've ended up admitted in the hospital without that additional support from our night nurses.
So, here's to hoping the rest of this week continues to go "up" and that we appreciate and give thanks for answered prayers!