12:30pm: We arrived at the hospital early for our 1:00 appointment. As soon as we checked in, we saw that our schedule had changed to 11:30... no one had called us to let us know. They are always supposed to call if there is a start time change. Oh well. There we were. Ready for what was to come. We knew her numbers were on the verge of needing platelets or at a minimum a blood transfusion. Would there be a temp? Would that be a new issue?
We headed into A/T to have Kayla weighed and her blood drawn. Her weight went up a few ounces! That was good! Her temperature was 99.4. Not high enough for admittance but close. We walked over to the med room which is set up like an ER over the weekends. There is always a lot going on in there, even if the people behind the desk look like nothing is going on. It's bright. There are a lot of private rooms with doors that open and shut automatically with the push of a button. It's probably the worst place to be when your counts are zero considering what comes in and out of there constantly. So, the mask stays on!
Kayla was hooked up in the med room and was half way through receiving her G-CSF shot when a nurse came in with the results from her blood work. She would be needing both platelets and a blood transfusion. Not out of the ordinary at all but time consuming. So, we decided that Anthony and I would go to the grocery store to get a few needed things while this took place. We knew it would be 3-4 hours. So off we went! About 20 minutes later, Denny let me know that they rechecked Kayla's temp and it had spiked up to 101.9. So, inpatient the went. LUCKILY they got a really cool room up on the 2nd floor. It is room #3! You can be in the fish bowl and see inside of their room! So I can walk in and Denny can see us! We can see Kayla and wave to her. What a great room!!!! So that is nice :) We know that she will have to be fever free for at least 24 hours before she can be sent home. So my guess is they will be inpatient tonight and tomorrow night at least. It's a good thing we packed a few things before heading in.
Anthony and I enjoyed a nice lunch out together (since we can't eat "out" with Kayla now). So, my treat to him. He loved it! When we got back to Target House we spent a good few hours playing with friends outside. The weather is SO gorgeous out! It's in the mid to high seventies and not humid. We are enjoying every bit of that while it lasts. At around 5pm, the cheer leaders started parading through towards Target House II. Apparently a few cheer teams throughout the US competed to raise funds. The top teams "grand prize" was to come here and be with the kids! They did a photo shoot and had a big taco dinner w/ the kids. I grabbed a to-go box to bring to Denny. I have to say, it was the most like California tacos I've seen since coming to Memphis yet! (he was VERY appreciative... and hungry!)
Anthony and I went inside to pack and grab a few more things (like Kayla's TPN that was in the fridge) to bring to the hospital. We went in and met Denny in the fish bowl. It was great to spend a while with Kayla and make sure she was set up before I left. She was sipping Tomato soup through a straw (my trick!). I showed her how to use the fancy TV remote that looks more like a keyboard since she was really too sick during the last inpatient stay to learn it! Kayla loves Animal Planet. While I was there we took her temp again, which was 99.4 (after tylenol). Her platelet transfusion was just finishing. I made sure she knew she could use Dad's phone anytime to text me updates or to call me if she gets bored. This will be an easier inpatient stay. She will get used to this. We all will.... This is what I am talking about when I say the timing here is so totally unpredictable! You just never know...
Kayla was supposed to receive a little more of the chemo Vincristine today. They normally give it in a push and it takes no time at all. They do it on an outpatient basis on day + 6. Because of the fever they will most likely give it to her tomorrow. We have been told that the blood transfusion should be soon. It will happen while she sleeps. Hopefully she will wake up feeling SO much better.
Today in the med room, we met "the band man". He is a nurse who is pretty notorious around here for all of the bands he proudly carries around her every day! I was amazed at how many he had! What a SWEET man!!!! He is so happy to share his story about the bands and even happily posed for this picture. What a love. I told him I will have to ask for a Curing Kayla bracelet to be sent here for him to carry too!
Kayla's fever remains "normal". She will most likely get her blood transfusion in the morning because they like to monitor them while awake. She is still scheduled for her vincristine unless her blood work comes back with something crazy on it that delays it. I hope not! I am working on Kayla's Facebook Fan Page that I just created through her other FB page which I didn't monitor. It was started by a friend when the "stuff" hit the fan. I am so grateful for everyone keeping her page alive with love even without any tinkering from me! However, I want to be able to update it with quick little important tid-bits, events, pics and links for those of you who are on there. So, I am working on it. I am techie... but FB can sometimes confuse me. Between the regular page, the groups and the fan page. I am trying to learn. Then they throw in this timeline curve which just means that the tutorials that were supposed to help are no longer working. I am tinkering. I will get it worked out! (thank you Tiff for helping me with this) If we can get Geoff to tinker too, it will be like the ultimate tri-fecta! If anyone knows any tips on the FB fan pages, please let me know! Here is the link if you are on Facebook. http://www.facebook.com/CuringKaylaRose The details will always be here on the blog, but I can update crucial things there quicker.
Good night everyone! Please send special prayers that Kayla's fever remains low and her counts go up.up.up.up.up.... uuuuup!!!!