This morning around 3:30 am, Alayna got another round of CPT and suctioning. This is done every four hours around the clock. So, we continue to have lots of interrupted sleep. As you know from my last post, she had the NP tube removed yesterday evening and was back on the cannula in her nose. Well, after the treatment this morning she couldn't get her stats back up. It is frustrating. I just want to bang my head on the wall. One step forward and two steps backward. She had to have the NP tube put back in and she is flowing at 100% oxygen. It's her 6th tube I think. That's okay, just as long as it helps her breath easily and she isn't working as hard. I keep asking her "what's it going to take to get us out of here?" I get sad sometimes because we've had quite a few neighbors rotating in and out of here.
She had an x-ray last night and again this morning. Both showed about the same thing...not a lot of change. At least it wasn't worse. Her complete blood count still shows the white blood count high, but breaks it down to show that the virus composites most of that number. She was a bit crabby today and I thought she felt clammy. It seemed like no matter what the temperature of the room it was she was always sweating. I'm hoping it was the virus working it's way out! She has been more alert today and it pretty comfortable right now.
Alayna really enjoys the massage part of her CPT therapy. But, as soon as the respiratory therapist is done, she knows what the next step is....suctioning....and she absolutely hates it. I don't blame her. It's like roto-rooter. She is becoming familiar with faces and she gives them a look of "what are you going to do now?" Alayna can throw some glares from now and then!
We've had visitors in and out over the past few days and I want to say thank you for coming to see us. It is so nice to just have someone to talk to you and get your mind off of things a bit. Also, thanks again for all of your comments on the blog. I continue to check it often and your words are more inspirational than you will ever know. It keeps me going knowing that all of you are praying for her and curious about how she is doing.
We are going on the 9th night tonight. I never imagined us to be in here for this long. This RSV and pneumonia is more than Alayna bargained for. She continues to be as bright-eyed as she can and a trooper through it all. I'm still working on getting her to smile, but for some reason she isn't finding a good enough reason to do that yet. Mom's crazy faces and silly voices are amusing, but just not funny enough. I can't wait to see those teeth stick out of that wonderful smile really soon. The day we walk out of here we will be rejoicing!
SOOOOOOO Long ago!!!!!!
16 years ago
7 comments:
Angie,
I'm sad to say that I hadn't checked Alayna's blog for about two weeks and am so sorry to hear of her recent struggles. I pray that things begin to look up for you soon. I was actually there last Thursday for the Radiothon, but had to head back to the QC right away. Please let me know if there is anything I can do. I would be more than happy to make a trip out there to see you - I definitely know how long the days can get!
Please know that we are praying for your family and know that she is in the best place possible. Tell the nurses hello for us - Stacia was always one of Nate's favorites, too!!!
Take care.
Michelle and The Guys
Michelle,
Oh, believe me, I've mentioned Nate many times here and I haven't met a nurse yet that didn't know him or of him. Stacia remembers you guys! She is great, as well as all of the other nurses here. I'm just ready to get home. Yes, the days are long and the anticipation for improvement is stressing me out. I hope you had a good Thanksgiving. I checked out your recently posted photos. They were nice. I'll be in touch. I'd still like to hook up with your "group."
Angie,
I forgot to mention (and I'm sure you've heard this from the neurologists) that the phenobarb may make her drowsy now, but she will most likely get used to it after a while. When Nate was first on it he almost always took a little nap about an hour after getting it, but that wore off after a few weeks. I know it's probably still hard to tell after her loading doses and with being sick, but it really isn't too bad. Just an FYI - it tastes nasty and we always had to mix Nate's with baby food....Blueberry Buckle works well!
I'll be sending out prayers to keep her sats up and for the junk to clear. We battled bugs like this as well and I think the low tone plays a huge part in it. Instead of her getting the junk out, it settled and turned into pneumonia. We hope that Miss Alayna will clear this hurdle soon and return home.
Love and prayers,
Michelle
Thanks for the well wishes Michelle. Yes, she was very drowsy that first day because of the loaded doses. It was actually kind of nice to get some rest. She has been much better since the maintainance doses have started. I can't tell if she doses off because of the phenobarb or just worn down. Did Nate use the liquid form or did he use the tablet cut it into quarters? I'm not sure which they will send her home on, but they told me it tasted terrible and to mix it with baby food. She told me just not to crush the tablet or the taste would come out. Looks like I'll need some Blueberry Buckle!
I wanted you to know that I have been thinking of you and little Alayna. I pray that she will get better soon! I wanted to share with you what Douglas said to me on Monday morning. I was checking each of the student's folders and Douglas came over and was standing next to me with a sad look on his face. He said "My Alayna is sick." I told him I knew that she was, but that she would get better real soon. Then he said "Yeah, I miss her!" He was not his usual excited self this week, I think he was thinking about his little sister a lot.
Your family has been in my thoughts and prayers all weekend! I hope you two will be on your way home soon!
Nikki Hall
Angie and Dana,
We have been thinking of you all weekend. You are strong, wonderful parents. Keep up the good work. The path you are on may seem very long and bumpy but it will be over soon.
Jim, Melissa and family
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