Day One

Today was the first day of our first CF clean out. Bear with me, it's late and I may ramble and miss some grammar and spelling errors! At this point I am choosing not to care! :)
We checked in around noon and soon met the staff we'd be working with. I was worried that there would be loopholes because we decided to check in today instead of Monday, and I was right. They weren't sure the IV team would be able to place the PICC line today and the respiratory therapists were thrown for a bit of a loop. It's all working out though.
The IV team was able to come down and place the PICC line which leaves a lot to be desired. J had to be sedated and we had to be out of the room for an hour. We were told he'd be out of it and sleeping the whole time so we went and grabbed some coffee and stopped by a hoity-toity toy store in Foothill Village to buy J an adorable little phone toy that we knew he'd love (and yes, he did!). We got back to his room and found out that he had a reaction to the Phentenol (sp?) that "happens to a few kids" where it has the reverse effect and ends up aggravating them instead of relaxing them. So, he whined and was restless through the entire procedure. When we got there, he was sitting up in his crib and watching a video of Cookie Monster singing with Will.I.Am on the nurse's phone. Pretty hilarious. He saw us and tried to stand up and ended up face planting, the sedation was still wearing off. I felt bad for giggling, but there were some pretty cute groggy-baby moments today.
Our schedule was totally thrown for a loop because of that procedure. He couldn't have milk after 6 am, and could only have clear liquids until 10. They finished placing the PICC line at 3, so that means he had gone 9 hours without real sustenance, and since he didn't rest during the procedure, 6 hours since he had slept last. Let's just say our attempt at lunch didn't go well, neither did drinking out of the hospital bottles. But, he ate some, then took a good long nap.
Never fear, I ran home and grabbed his bottles and some home comforts to make this as easy as possible on him. We are praying that he doesn't have a virus so that he doesn't have to be on "isolation" in our room. If the test comes back negative, we'll be able to wander the halls a bit.. they even have cozy coupes for kids to ride in. Pretty sure that would make his week!
This evening we had our first treatment with the respiratory therapist. It did not go well. For so many reasons. A masked caper coming to pound on his chest wasn't something J was down with. The difference in nebulizers and difference in setting threw him for a loop. Our biggest prayer request for tomorrow is that he gets used to the new treatments somehow. They are going to do treatments 4 times a day, so it's a pretty frequent and crucial part of his care. Good treatments mean more cleaning out, so prayers are greatly appreciated!
It's so silly to us how hospital stays work. We have all his medication already ordered and even paid for, yet we have to use the meds from the hospital. The treatment issues would be solved if we could use the same equipment we use at home, but no, we have to use disposable nebulizers. I understand they have to cover themselves, but with every barcode that gets scanned, I can just see it listed on our hospital bill. Let the billing begin!?
Luckily, we budgeted this year as though we'd be paying our out of pocket insurance max. God is good to provide exactly what we need.
We are continually blessed by the support we're surrounded by. Whether it be a text, e-mail, phone call or visit, rest assured that your thoughts and prayers don't go unnoticed and we pray that you're blessed just as you have blessed us.
Praying this gets easier, but as the blog title commands, "day by day".