We had a good little stretch there. The week leading up to the wedding Kai was doing very well. He was on minimal meds and he had been doing great with all of his activities. I was really settling into the possibility that we would have many more of these content, stable days to share.
Thankful the weekend went pretty well but once we were back home I noticed Kai wasn’t doing as well.
After the long busy weekend we were right back to Perkins and the respite center. He did well in his groups but by Wednesday he was totally wiped! At first i didn’t think too much of it, we had been running non-stop for the past five days, I think we all needed a quiet nap day! So I let him sleep. Thursday he slept a lot again and when he was wake he seemed to be little more uncomfortable.
It feels like the minute i get used to things being one way, as soon as we get into a good grove with meds and feeds, things shift again…
The past few days he has been having some breakthrough pain. I have had to add in some PRN pain meds back into the schedule, which then leads to his gut slowing again. Three nights in a row he has woken up with spit up formula all over his pillow. He has been shaky and has started to shriek in pain again.
I can’t explain this sound he makes. It’s not a cry and its not a scream in the way you hear from other kids, but it is the most gutrenching and heartbreaking shreek I have ever heard . This was the sound he made a few weeks ago when I really thought we were loosing him fast. When I was ready to let him go because he was so obviously in pain and there was nothing i could so to make it better. It’s a sound no parent should ever have to hear come from their child and I thought we were doing well keeping it at bay… But it’s back.
So many amazing things have been happening for us lately. Such emense support and generosity that I am so thankful for and eager to share about, but when I see Kai in pain like that the rest of the world clouds up around me. It is so hard to see anything past his little face snuggled in my arms.
Things went on like this for the rest of the weekend. By Sunday his pain was well managed but he was very lethargic. I decided to go visit Ashley and Joe in Boston and spend the night. They are always a great support when trying to figure things out. I can say anything to them and they can have those hard conversations you dont want to have with just anyone. They’r door is always open to us and they are always helpful in that way. And I figured if things with Kai got worse we’d be that much closer to the hospital. He spent most of the day and night sleeping comfortably which I tried to convince myself was a good thing. The best we can hope for right now.
Everyone keeps telling me there will be ups and downs, good days and bad but when those bad days come I am never prepared. As much as I tried to be ok with him having a few bad days, it was eating away at me. I decided to talk to our NP monday morning and she was happy to have us come in to check him out. I was so unsure of what was going on that I was preparing to spend a few days in the hospital with him.
I am happy to say he has an ear infection!!
It always feels so wrong to be happy about an ear infection, but ear infection we can treat and hearing those words I was instantly filled with hope that he may be feeling better soon.
We stayed an hour or so at clinic and got IV fluids and antibiotics. This morning he is like a different baby already!
I hate that every time he has a bad day I automatically think the worst. I prepare all over again that things could go down hill fast. That I could loose him at any moment. I try hard not to live life thinking of those things but when he is not feeling well it is so hard.
Today I am relieved! He is awake and alert and comfortable. Today we can have a typical happy day with a typical kid ear infection!