So today was rough emotionally, it was Con’s 4th art class (his first was the day before “the scan” because I decided that day risks were worth it because life was short and I would have rather regretted sending him if he had a perfect scan vs the regret of him “not living” if the scan was bad) and I honestly think it was his last, he did okay, but did not enjoy it as much (I think a full hour is becoming too long for him) and to make matters worse threw up all over the place between the story and the project, luckily Amanda and my friend Ryan were there to take care of the mess and Claire while I got Connor cleaned up and changed (also Grammy thought enough to pack Con a second pair of clothes, because being so far away from the baby stage it is not something I would think to do). All in all there were parts he really liked, especially staring at and copying Ryan’s son Josh, but other parts he was not interested in. But, with next week off from class, I just can’t see a way that he will be well enough in two weeks to go, this was very sad for me, because it takes us a bit out of our denial, art was something fun, something normal. This does not mean the end of art at home that will be an even sadder day because art is one of his favorite things. Luckily though, when we got home, Claire started being super silly and hiding behind the couch cushions, Con literally thinks Claire is the funniest person on earth and needed to join in on the fun, and snapped right out of his funk. We then proceeded with another project that Campbell’s mom dropped off, but since we have the best nanny ever who loves Pinterest, will be putting the Amanda twist on it, will post the final product when it is done!
The doctors don’t exactly know what to make of the throwing up, it’s been twice in less than 24 hours but is not happening when they would expect, early morning. The plan as it stands right now is to go in at some point next week as he needs his port flushed anyways and let the doctors make an assessment. Right now we are just starting with zofran and will up him to Ativan (al though I am told none of this will help if it is progression) to manage, if it is decided to be progression decadron would be the next option but I hate that drug and how it makes Connor feel, act and look. Before giving him one dose of it someone will have to walk me through the benefits of giving it and risks of not giving it and we will then decide if it is worth it. To make the day even more upbeat (jk) I also had the joy of talking to hospice tonight as they wanted to initiate care tomorrow, then after a long conversation with Campbell’s mom have decided to decline hospice for the foreseeable future. Here is the problem with hospice, it is not a program created for children, our social worker at NYU called 7 programs in our county, none served children, the good program they typically use in NJ does not serve our county, so we got roped into a program that is “so-so”. The real thing that set me off was the cost of hospice, there have been a lot of costs along the way and I have had no problem spending a penny of it, but how hospice works under our insurance is from the day you initiate care whether they come to your house or not on a particular day, you pay a daily fee for every single day, I could not believe it when they told me this, I said if I am paying daily shouldn’t a nurse come by everyday, the answer was no. In addition to this they don’t do much, I said to the woman, I know I am going to be administering all the meds, etc. she could not disagree. So I called Robin and talked to her about what Hospice did for them (it was covered differently under their plan, but she mentioned that Greg had told her that his plan changed this year and it would have been cost prohibitive), and basically she said for us not worth it, all we need is for someone to access him, then we are responsible to administer his meds anyways, the one benefit is that medicine and supplies are delivered to your house and that we may need to go to shop rite to pick ours up, big deal we have a lot of people willing to help. So for now we are looking into our second option which is a home health, which would send a nurse as often as we need to access show us how to administer meds, etc. this I feel would be better for Con anyways, our house is a safe place for him and I want to keep it that way for as long as possible.