So today was not great, he was up most of the day, but it was because he was in pain, we needed to bolous him a few times. He had two meals and threw them both up, he was then whining tonight so we gave him a spoonful of ice cream it calmed him down until he threw that up too. Not sure what all this means for eating, we will see. To top this off our normal hospice nurse has a cold so could not visit so the other pediatric one came, well she reaccessed him and left, we went to give him his Ativan and could not flush at all, we called her in a panic, she rushed back, he was in extreme pain because if we could not flush that meant he was getting no medicine at all, we guessed on an oral dose, but it did not really work. While we were waiting we tried again all the sudden it worked, then I notice something wet, we notice blood coming out from his site as well as liquid, likely the medicine we were trying to give him. She got here, took everything out, he was bright red around the site, accessed him again and there was no return at all, this whole time Connor is shaking in pain and grinding his teeth. She calls the palliative care dr who said he needs to be on IV meds and then the pediatric IV specialist who is 2 hours away, she did not feel comfortable herself trying again, meanwhile Casey and I are freaking out, any infection could kill him what if all this caused a line infection, why wasn’t it working at all, could we lose the ability to lose the port. Allyson came and grabbed Claire because Amanda had just left (who was more than happy to go with the big girls I did not even get a goodbye) and we rushed Con to the hospital. They accessed him in 30 seconds and two minutes after his meds started flowing he realized where he was (he loves clinic) and started saying “whoa” and making a ton of happy noises! Thank goodness it was a false alarm, but overall a very rough day.
The saving grace of today is this hilarious picture of Claire drawing on herself at library with Amanda! Amanda does so much with her each and everyday (today Claire also got to take her friend Sarah to the park and to feed the ducks with Amanda) thank you to everyone who convinced us we needed her even when the timing has not been 100 percent right, Claire’s days are jammed packed with activities she loves and it is all about her, which is amazing given all the instability right now!