Adjusting To Steroids
Hi all – right after I sent out last night’s update, Sally woke up in her crib and unable to ease her back to sleep, I took her into bed with me. For the next 3 hours, Sally showed me what the term ‘tossing and turning’ really means by literally rolling back and forth between me and the arm of the chairbed and pressing her legs into me. She didn’t cry or anything, just couldn’t stop her body from thrashing around. I finally realized she must be amped up from all the steroids, and asked the nurse at her 2am vitals check if anything could be done. After a lot of back and forth Sally was given a small dose of a Benadryl-like medicine into her IV and 5 minutes later was as asleep as if she was rock. If rocks, you know, slept. I put her back in the crib and she didn’t move or wake for the next 5 hours.
With a shortage of good sleep, Sally was very tired and grumpy this morning. “Senora Grumpypants” I just kept calling her. She did manage to drink from the bottle, and drank a couple times today, which she hadn’t the previous 12 hours since I had arrived at MSK. Following a late morning bottle, Sally napped for 3 straight hours. Unfortunately my brother (who had come in from London) and mom (who had come in from Florida) arrived as soon as she nodded off, and had to sit there and watch her sleep for those hours. They did manage to get to spend some awake time with her before they had to leave. My sister and brother-in-law (in from Buffalo) also arrived and got to see Sally get occupational and music therapy. It was a very Kabel day today, and had them take Sally on her laps around the floor that she so much enjoys.
Sally improved as the day went on, however she still isn’t taking in enough food/fluids, and is obviously still adjusting to the huge doses of steroids. As Nicole and I passed each other this evening, we both agreed it was the right decision to keep her admitted, if she had gone home yesterday we’d already be back at MSK by now.
On a sad note, I often talk with other parents on the floor, many have gotten to know Sally’s face and stop to ask us about her now that we’re there so much and have become familiar. Talking to one mother who enjoys seeing Sally, I learned that her son, suffering from AML Leukemia, is not expected to survive and they are just making him comfortable at this point. Nicole and I feel awful, our hearts go out to this family, who only a couple doors down from us are going through every family at MSK’s worst nightmare.
Please keep Sally in your thoughts and prayers, as well as this family.
Matt
Prayers sent to all of the families at MSK. <3
I don’t always post, but always follow Sally’s story. Dr. Kobos is a doll and the most forthcoming with info and reassurance. We loved her. Didn’t realize the difference in protocol for infants. Ugh. As long as it works, right? I keep your family in my prayers each day – not only Sally, but her parents and brothers. Just know not only do you have so many family and friends publicly cheering for you, but many others, some complete strangers, who are silently cheering too! With love and hope, Margaret Martin
Will keep them and you in our prayers…hugs
You are always in our prayers. We will also pray for that family
So frustrating when all you want is for her to be comfortable. Hope she continues to adjust to the steroids. Hope she keeps eating. Thinking about Sally, Thomas, William, Nicole and you always.
So glad your family is there for support..love and prayers to you
Glad Grandma Kabel and your brother got to spend some awake time with Sally. All the MSK families are in our prayers.
Matt..I have been keeping up on your precious baby’s progress. We here in O.P. pray each day for every day to be better than the last. So happy to hear “Sweet Sally” is such a fighter..she comes from a family of very courageous people..our prayers for continued healing and full recovery..love to you and yours…♡♡ the “Petes”
Sally,
In Constant ,Thought and Prayer…xoxoxoxo
Much Love,o and give her some hug’s for me please!
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxooxoxoxoxox
Love Sara
xoxoxoxox
Matt a voice from the past, what a wonderful family you have and a beautiful little girl Sally. Our thoughts and prayers are with you guys.
Phil/Corine Henry
Thinking about you guys and sending love and hope! xoxoxo