Today was just a messed up day.
We found out Friday night from our nursing agency that our Monday nurse is no longer coming on Mondays, “Oh by the way…”. So that means we have to train another nurse for Mondays, but since today was a Cerezyme day, I wasn’t going to have a new nurse start during her Cerezyme infusion. Just would not be helpful at all.
So the plan was that Daddy was going to drive Hannah and I to the infusion center (because it is just not safe to drive distances, even 30 minutes, alone with Hannah). He brought his laptop so he could work there while Hannah and I sat in the infusion chair for her treatment. Also, being that I only had a couple of hours of sleep, it just wasn’t a good idea for me to drive anyway.
Our regular nurse was there, and for whatever reason, she could not get a good stick. Three attempts, and she could not get a good vein. Poor Hannah was just so upset by this point. Never once, in the 2+ years that Hannah has been going for her bi-weekly infusion treatments, has Hannah ever had to miss a treatment because they couldn’t get an IV. So, we had to reschedule her treatment for this coming Thursday — which screws up our Thursday plans and no future infusions, which we are no longer going to do on Mondays because we have the new nurse.
We came home, and our new nurse showed up. Very nice lady. Hannah tolerated her well, which is a good change from the time that she disliked a new nurse so badly she wouldn’t even go near her. So I spent the day orientating the new nurse to our routine, Hannah’s toys and apps, and everything else. About 5:30 pm, I was so exhausted from lack of sleep, Daddy came down to finish the day while I crashed.
Woke up at 8 pm tonight, and the new nurse was just getting ready to finish her shift.
Hannah’s naps were off also all day, so she didn’t take her second nap until around 5:30 pm.
Guess what time she fell asleep tonight. 12:15 am!!! Yep, I just put her down a little bit ago. Daddy fell asleep at 10:00 pm, and from that time until after midnight, she just sat cuddled next to me, smiling, grabbing my hands, and just being so dang adorable.
Yep, this was at midnight...
Midnight giggles...
Sorry you guys had such a bad day. I am worried about you and your chronic lack of sleep. Exhaustion can take its toll. Wish more of us were closer by. Hope the rest of the week is better.
🙁 Hope that Tuesday is a better day!!
so sorry to hear you are having so many problems with your home health companies. If u guys were still in texas I could have hooked you up with a really great company. Hope you week gets better and get some rest u are always awake…”you have to take care of yourself before you can care for someone else”!!!