First of all, Miles was discharged from the hospital last night. He had pulled his IV out late morning yesterday just when his tummy started doing what it is supposed to after surgery (he was still throwing up at first, but that was expected). He was keeping his food down for the feedings to follow so when I was about to leave after dinner to be with Oliver while Dan stayed, I just happened to ask our nurse if he thought we'd get to go home the next morning. He then said he was working on us going home that night since he was doing so well. Of course discharges take a while so we finally got out at 1030pm. I did go to my in-laws where Oliver was to see him and give his meds, then back to the hospital to get Dan and Miles before back to get Oliver and head home. Miles is doing great with all his feedings, keeping his food down and passing it through like normal now. Glad that is over.
Now, Oliver is another story. He started the "Delayed Intensification" round of his chemo treatment. This has him taking that nasty steroid for 7 days in a row, then 7 days off, then another 7 days in a row. He started this on Thursday that just passed, and the dose is double now than it was before. The emotional affects have already started. His mood swings started early and it seems like so much more this time. Lots of crying and hugging and not sure what we are feeling or why. He goes from being super happy to super upset in a snap, with nothing to have set it off, only himself. This month is going to be emotionally draining for us all, but mostly for him. It is heartbreaking to watch.
He has an IV treatment on Monday afternoon, unfortunately right at nap time so that is not going to be fun. He then has the same 2 drugs he had via IV this past Thursday at the start of this, again this Thursday and the one following. Once we get through that and the steroid on, off, then on, he has a break in the middle of this round until his counts recover. However, we will probably be in the hospital at some point if his counts get too low during these weeks.
October then will start the 2nd half of this round, which is a bunch of new stuff which can also make his counts go down and put us in the hospital again. I think we are going to skip any at home school sessions this month as its going to be a wash with his emotional roller coaster.
While we were in the hospital with Miles, we'd get people who remembered us from April/May but some who were confused as they remembered us, but saw this baby they've never seen, then its a surprise when they realize its the other kid. We had the one nurse that we had met at UCSF in the waiting room when both our kids were having heart surgery most of the days (and us realizing this when she first saw Oliver as his nurse back in April). We are glad to be home as we were in a 3 bed room and one of the longer term neighbors in the room unfortunately were inconsiderate of the fact we all had to share this room (noise levels for everything). At least when Oliver gets hospitalized, he will get a private room.
Count checks will the next three Mondays per the schedule so I'll try to update then. I haven't put in the last couple as we've been so busy.
We won't be opening up the meal calendar as we can never know where or what will be happening, but if you really want to bring us a meal still, just contact us directly to set up a date. Again, thank you to all who have brought meals. Thanks to all those who have also since sent gifts, or have performed some random act of kindness, or have shared their kind words. My mind is a mess and I just started getting around to trying to remember and make out proper thank yous. I actually had a small pile ready to go get mailed but of course, they are still sitting here on the desk. I hope that you can all understand if I forget, its not personal! I hope that someone if not one of us has given some kind of 'Thank you' for anything you may have done, if not mailed, verbal, or via email.
AGAIN - THANK YOU ALL SO MUCH! It is great to have such support and love around us.
