Day 1 of Hospice
Today was the day we finally agreed that hospice was what was best for you. The lab work I did to prove to aba that you weren't sick started to come back to us. I was honestly (secretly) really nervous. I was not sure if your body was going to play one of those tricks where your labs would look perfect and it would therefore leave aba still fighting that you were sick. One of your biggest claims to fame was having an abnormally high white blood count when you weren't really sick, so despite my 100% outward display that I was sure you were dying, I still had a little bit of doubt, that maybe he was right. I always said I was bound to be wrong at least once during your life...however, that time never came.
The basic CBC panel that would include the labs to indicate illness was for some reason pending when the first call came in. Your CMP, the metabolic panel, and liver panel that we had just ran not more than 20 days prior for your routine TPN check was the first set to come back. They indicated your liver was not functioning properly, your albumin, phosphorous, protein total, carbon dioxide, potassium, and triglycerides were all abnormal. It was the first set of confirmation aba needed, but what he really needed we would have to wait until tomorrow to receive.
I didn't take many pictures of you today my love. I am sorry, but you were so swollen, you couldn't even open your eyes. Two of your teachers from school called and asked if they could come and see you. I felt anyone who asked, who meant something to you, was allowed and more than welcome to come and say their goodbyes in person. Writing that makes the tears flood down my face, and while I never said those words aloud, it was the unspoken reality of the situation. I warned them because you didn't look like yourself, I was afraid it would be too much for them. They told me they didn't expect you to look great under the circumstances. I took a picture of the 3 of you. I haven't been able to look at it again until today. Gosh, you were so beyond loved throughout your life.
I think they came as the hospice nurse was finishing up admitting you, either that or right before she came. Admitting you to hospice was one of the most unreal experiences of my life. I don't think I had been as up and down with my emotions over a 2 hour period as I had been during that meeting. I think I said at least 300 times, "this isn't real". It didn't feel real. I couldn't comprehend what was really happening. I don't recall feeling any sort of relief during or after you were admitted. I just remember feeling like the rollercoaster was getting completely out of control.
Your first dose of medication came to (hopefully) help you reduce your swelling. You had hardly urinated for almost a week. We were advised not to start your TPN or lipids that night after the lab work came in. Your port was never accessed again. You had not had any formula feeds for 4 days at this point. You were somehow surviving on no more than 15ml an hour of Pedialyte around the clock. (all those times we frantically rushed you to PCH when your tubes would break proved in the end to have been unnecessary based on how little the lack of feeds actually impacted your ability to live) We prayed in the morning you would be able to open your eyes and the swelling would be decreased a bit. I texted Mrs. Emily and asked her if she and Mr. Andrew could come tomorrow night to take (one of our last set of) family pictures after Shabbat ended. Hospice of the Valley also had a photographer coming on Sunday, but those were slated to be you in your Make a Wish pool.
We started to cram a lifetime of experiences and memories into however much time you were planning to be with us. That was a panicky feeling, we just didn't know the timeline. My Type A personality really struggled with the unknown. Hospice told us it was up to you, it could be weeks, and some children live months on hospice. We knew that last part wasn't a reality for you, but I at least hoped it would be until we accomplished the items on my checklist. I had thought up and until now was the hardest part of everything, I would quickly be reminded that wasn't the case, and I should have known because things can always get worse.
Until tomorrow my love.
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