Bye bye PICC line and we wait...

Yesterday, Riley finally said bye bye to the PICC line! It had been in for a while so we were happy to see it go! The nurse removed it in the room and of course we took a picture to document it!

Riley ran a slight fever yesterday morning of 101.2. This of course prompted more blood cultures and worry that she may now have a secondary infection. If so, they would start her on another round of antibiotics today. Good news is all of the cultures were negative so she's infection and fever free!

Riley is still battling the RSV. Last night was a difficult one as far as her breathing etc. I know how I feel when I have a bad cold and I am pretty sure Riley feels the exact same way, crappy. The resident overnight would not let her have any tylenol as they were concerned that if she did spike another fever they wouldn't be able to catch it. Finally, around 4am the night nurse got the okay for morphine. At this point I wanted anything to make her more comfortable but, wasn't really a fan of the morphine. The attending happened to show up shortly after and approved the tylenol as morphine can mess with your respiratory system and that is Riley's main issue. She got her tylenol and relaxed and finally slept for 4 or 5 hours.

We've been trying to keep Riley rested as that is the only way to get over the RSV and she still is getting her albuterol treatments every 4 hours. Yesterday, we were told PT was on the way and went to grab a cup of coffee. When they say they are on the way it could be 10 minutes or an hour. Our nurse told them we'd be right back and they said they'd be back in 30 minutes. They never showed. Even after our nurse called them again. Needless to say we were upset. Therapy at this point is minimal and involves stretching and different positioning but, we know she needs as much as she can take at this time.

Today, we had our same sweet nurse and again we wondered when PT would show. All day we heard nothing from them. Finally around 3 the ST came in and I made it very clear we weren't happy with the way the PT/OT/ST "team" was handling Riley. They were going to be seeing her 5x week but, with the RSV we really need to give her time to rest so it will be more of a checking in situation until she is better. This was never explained to us and the no show the day before made us mad. They even tried to put the blame on the nursing staff and trust me it is not a nursing issue at all! Anyway, it just felt like the first of probably many battles we will need to fight for Riley's future care as we get used to our new normal.

The child life specialist brought a small DVD player by today. She also had some Little Einstein DVDs which we were thrilled about because that is one of the shows that Riley & Mason LOVE! We've been turning it on for Riley here and there and hope the familiarity makes her feel more at home in the hospital.

Now that Riley is unhooked from the PICC line it is much easier to get her out of bed. After Dave headed home yesterday I was able to hold her for an hour or so. I was also able to help the night nurse give her a bath in bed. She loved having her head and hair washed and made the sweetest cooing sounds to show how much she enjoyed it. My mom purchased some 12 month nightgowns that we cut up the back and we put Riley in her new nightgown after bath last night. It's nice that she can wear something other then the hospital gowns that she was swimming in.

We are in a somewhat holding pattern for now until Riley gets rid of the RSV. We're still in the PICU. She's still on the high flow oxygen although, they have been playing around with the numbers to wean her off of it. Hopefully, as her RSV gets better the oxygen won't be needed as much, as she does breathe on her own but, with the RSV it is still needed to help her little body heal.

We continue to be overwhelmed with all of the love, prayers and support from all around us. I have some special people to thank tomorrow but, for now need to watch some "toons" with Logan before bed.

Thanks again for everything! We Fight On another day!

Love,
Dave, Megan, Logan, Mason and Courageous Riley