The nurse stopped the infusion to let her body rest, we gave her some anti nausea medication and once she settled we began the infusion. Things improved...she even slept through most of it, thankfully.
We learned that Alice's CMV (cold virus) came back positive...which means another IV infusion for her. She will need Gangcyclovir every 12 hours for several weeks. Hopefully in the next few weeks she will only require it every 24 hours. Considering that she is entering another phase of immune breakdown (Rituximab), the doctors don't want to take any chances on this cold virus...better to prevent it worsening. I called the pharmacy and asked that I have a second pump, in order to be more efficient with her infusions...trying to promote more sleep at our house. :)
While in clinic I was able to coordinate many appointments for Natalie and Alice this up coming month. January will be busy. Natalie has visits with Pulmonology, Neurology, ENT, Cognitive Rehab, and Bone Marrow (1 yr. post transplant work-up). For Alice she will finish her chemo before January is over and only has one final appointment with the orthopedic (for her leg)....and of course her continued weekly Bone Marrow appointments.
Hopefully after January, our schedule may ease up a little. Possibly soon Natalie can start school.
It seems silly, but sometimes I get nervous to think maybe soon we will be merged back into normal life. I worry that I won't be able to keep up with all the outside demands, etc. Of course it will be awesome to participate in a variety of things, however, I worry that if it's too soon we will be disappointed or discouraged. I suppose allowing fear to determine our decisions is a poor choice of route. We only wish to do that which is best for each of our children physically and emotionally.
Somehow things come together and everything works out...it always does.
Lisy
The Ice sculptures are finished. |
Not Feeling Well |
Keeping the Pink Bucket Close |
It's Over, All Better! |
Going home, Alice brought her new backpack...full of treasures to the hospital. She loves it. |
Lisy, I was able to watch your video tonight...it brought me to tears. I cant believe all that your sweet family has endured, and you continue to stay so positive and faithful, thank you for your example! I will continue to pray for you and your girls. I hope this coming NEw Year brings many blessings to your family.
ReplyDeleteWe love you and are praying for you!! the future is always scary because of all the unknowns...put your trust in God and take it one step at a time :) Good luck this month!!
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