We are exhausted! We have been here for two weeks with no real end in sight. As you know, we have a very important trip coming up, in approximately ten days. It was decided that we will wait until Monday to make any decisions about going or postponing our trip. We will go, it’s just matter of when! Make-A-Wish will bend over backwards to make this happen for us…amazing!
Last night Lucy was transfer out of the PICU onto the regular floor, not our usual unit, but one we have been on before. They are working at getting us a room on our usual unit as everyone here knows and understands that familiarity breeds comfort. Some of the nurses from our usual unit came over last night to see our girl, they were so happy to see her with her eyes open. We are so blessed to have the love, care, and concern of so many. We feel so loved here.
In order to get transferred to the floor Lucy’s Dialaudid had to be changed from a syringe pump to a PCA pump-patient controlled analgesia. This is to ensure her safety, as well as ensure that Lucy dose not “share” her meds with anyone else.
Medically we have reached a plateau, Lucy is holding steady. Her blood counts are holding and many of her lab values have remained the same. These are all good signs that the inflammatory process has ceased, now we just need to deal with the repercussions of it. Lucy’s liver, spleen, gallbladder, and pancreas are still very swollen. She is unable to sit up at all or even move on her own. We have to physically roll her from one side to the other. She is very protective of her abdomen and is compensating her movements to adjust for pain and discomfort. We decided to hold off on repeating an abdominal ultrasound for a few days because it is very obvious on exam that things have not changed much from her last ultrasound a few days ago. Why do it if you are not going to do anything different with the information.
Lucy’s pain is still under control. She is requiring very few PRN doses of dialaudid. We think that the clonidine patch is helping to alleviate some of her pain thus taking away the need for PRN doses of dialaudid. We are going to increase Lucy’s dose of clonidine in hopes of seeing more improvements with her high blood pressures. They have come down slightly, but not nearly where they should be for a kiddo Lucy’s age.
We are starting to talk about the weaning off process. Pain management came in and basically said that it is a process that takes time, how much time they could not say, it is very individual. Lucy is on a very high does of dialaudid so we are looking into other meds that we can use to step her down gradually. For today, we keep where she is at.
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Love and hugs to all of you!
I am so happy to see positive progress!!!! Eithene was 2 when she started clonidine for her high BPs, and it can be a very beneficial med cardiac-wise, and dysautonomia-wise. We used to give it to her via patch, but with the intense swelling transdermal meds aren't working anymore, so we give it IV now- it remains one of the better meds she's on. I hope that Lucy is able to stay on it for awhile!
As for the pain meds, hopefully the weaning process won't be too bad. Eithene has been on narcotics for about a year, and though it sounds very scary to have a young child on long-term narcotics, it really isn't. Plus it has been the single most effective category of pain meds we have every tried (and we've tried them all!). Methadone is a good pain med that frequently helps wean kids off of narcotics, so maybe that will be an option for Lucy.
So good to hear she's holding her own and things are improving. I can only imagine how tired you all are and the stress of being there for so long on your family. Praying she continues to improve and you can keep her comfortable. Hugs and prayers-
Heidi & Jack
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