Here are a few updates from the last couple weeks:
- Week of Feb 24th was a lot of waiting around until the Botox procedures... he was starting to feel better from his cold... we did 2 changes to his IV diazepam, which ended up being too much too fast... so we had to go back up on IV diazepam
- Feb 28th: Botox injections - in saliva glands and stomach... post procedures he was very sleepy. He slept most of the weekend recovering (and probably also getting used to the higher dose of IV diazepam again). TBD if the procedures actually helped - even harder to know now that he is sick.
- Monday March 2nd was a sad day... we moved to the Peds floor... most would think this is a good move; however, we have gotten pretty comfy in the PICU. Everyone knows us, each nurse only has 2 patients, we know the doctor teams, they know Eli's story and our goals for this hospital stay, and we feel that Eli is watched much closer in the PICU.
- On 3/2 we also tried another lower dose of IV diazepam... so it was the perfect storm also being on the Peds floor. Tuesday night - Thursday morning (3/3-3/5) were rough. Eli was showing again that this lower dose of IV diazepam was not enough for him. Wednesday he went back to his last comfortable dose... and it took some convincing (OK maybe some yelling) and some help from the inside to get his PRN IV diazepam doses going over night Wednesday night to help it build back up in his system. By Thursday afternoon he was back to being comfortable!
- BUT... Wednesday he also started getting junky again... and was tested again... and Thursday we found out the Peds floor also gifted us with the Rhino virus, another cold.
- Thursday night he was really struggling to breathe - needed high flow oxygen and was moved back to the PICU... everyone was sad to see us back, but we were relieved :)
- Friday 3/6 Eli was continuing to struggle to breathe (he was breathing really fast and hard and not saturating enough oxygen)... so he went on on a RAM cannula Friday night... which is noninvasive ventilation. He responded really well to this, and will work on trying to wean off of the RAM and go back to high flow oxygen today (3/8).
We had another care conference on Thursday 3/5 with our palliative support teams at the hospital and for home to really start talking about our options for IV pain medication at home. The team has decided that due to his needs to keep him comfortable, we have qualified for hospice care. This will hopefully open a door somewhere to help us transition to home. At this point, we are still at the hospital because we cannot yet get IV diazepam or other IV pain medication at home... and the longer we stay here the more things he keeps catching. So there is a lot of people working really hard on the paperwork and approval of medications for us to try in the home. We have another care conference on Thursday to see where things are shaking out at and continuing talking through support for Eli.
Eli's birthday party was supposed to be yesterday (3/7) so Nate & Meg are in town... and Ava finally got to meet baby Axel! She's only been waiting since the day he was born. She is in heaven.
Praises!:
- Everything that everyone is doing to help us meet our family goal of having a comfortable Eli at home!
- The continued support from family and friends with Eli, food, and encouragement
- Prior to the cold, seeing some smiles and giggles again
- Being back in the PICU :)
- Making more time for Eric, Ava, and I to be together lately
Prayers:
- Finding a solution for IV pain meds at home
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