This week!

Last Monday at clinic the Doc's told us that Jaylee would be admitted this coming Friday April 2nd so we could start the chemo! We were both excited and scared. We know this has to be done, but it's still hard knowing its coming. This last Wednesday though Jaylee's central line got clogged and we had to try and push the blocked fluid out of the line. When it finally came loose, it shot into Jaylee really fast and sent her little body into shock and she started to shake like she was cold. After calling the doc on call that night, they wanted us to bring her up to the hospital to be checked out. By the time we got there she had a rally bad fever so they did some blood work and found that there was a bacteria in her line and when we pushed the fluid into her, it also pushed the bacteria in too. After being at the hospital for about an hour her breathing got labored and they decided to transfer her to the PICU. We were in there for a day. One of our biggest concerns was if this was going to set the chemo date back and the docs said that with it still being a week away, that will be enough time for the bacteria to be under control. So that's good. We will prob be stay at the hospital until they start the chemo so we are back to living here pretty much! It's amazing how things work out sometimes. It sucked that Jaylee had to get sick again with this bacteria but a blessing at the same time bacause it was just a matter of time until this happend anyway. We are just glad it happend before she started chemo, or else it would have been ALOT worse! Other than the last two days Jaylee has been such a good girl. She's happy and playing and all around is great!

What's new!

So it's been about two weeks since we have had Jaylee home. After getting the hang of all her meds it has been pretty smooth sailing! When we were released, we would still need to take her to clinic two times a week to get her Enzyme shot, which helps her blood counts go up. This last Monday, the doc's decided that she is doing well enough that they would quite giving her the shots and let her counts go back down so they can begin the transplant process. They are estimating about three weeks is when we will start it all. We are excited that it is all going so smoothly and can't wait for this process to be over with. We want to thank everyone for all the prayers that are being offered on Jaylee's behalf ! They are working!! Love you all!

Update

WOW! I don't think Jeff and I anticipated how much work it is going to be to have Jaylee be at home. We will never look at the nurses the same again. They are definitely underestimated!! It is amazing how many medications Jaylee is on and how often she has to receive them. When we first got home, we had the Home Care Nurse (HCN) come and help us set things up and go through everything we have to do with her meds. She got there at 7pm and didn't leave until 10pm!! I am not going to lie, it was VERY overwhelming! Starting at 6am she has an IV med, 8am she has 5 meds through her feeding tube, 2pm she has 2 feeding tube meds and and IV med. 8pm another 3 feeding tube meds and finally 10pm 2 more IV meds!! Jeff and I are always so worried we are going to screw it up, we have to double check EVERYTHING!! I know it will get so much easier once we get our system down, but for right now its a tough job! BUT it is ALL WORTH IT to have Jaylee home!! Well that's it for now, Love you all!