We are scheduled to go back in Monday, Dec 6th (if numbers are good after clinic we go to admissions office). From the point that chemo bag hung on the IV post to our green light for discharge-we made it in 4 days of elimination through his body. The 5th day was that Monday we were admitted and he was hosed with fluids to prep for the chemo. I hope to say this stay will allow for another 4 day waste elimination but we shall see.
This lazy week at home marks week 17. Lazy because G is neutropenic and we cant take him anywhere. Which means the Lunch w Santa we had planned at T's school tomorrow will just be Triston and Caden and I.
We have been home since last Friday and just hanging out. I got alot done last weekend. Even some midnite shopping with Najette Saturday nite. Spent way too much and now considering returning some items. I get caught between wanting to make this an awesome xmas to make up for, alot of things AND overspending. I want to give it all to the boys. And yet, deep down I KNOW the most important thing is being HERE, altogether. What's a mommy to do?
Monday I was hit w a head cold. I slammed me that evening. Earlier that day I ran some errands while Mamac sat w Grayson and Caden. I need to get as much done as possible while I am home. Those weekdays in the hospital suck up so much of my time and I find myself scrambling when I get home. I never recover. So, I ran around that day hunting down bday favors for Triston's party at school and the boys' bday party later this month. His actual bday lands on Red day at school so I found santa hats with cute lil sayings on them at the dollar store. Easy! I hit up a couple more places (including Jewel to pick up 5 Tribunes bc Grayson was in the paper that day). I had no luck finding 40 + train theme items of any kind in a dollar store so I had to order the big bday party favors from Oriental Trading Co. Luckily I held out til the free shipping and extra coupon day and that was another thing off my checklist.
Thursday - dr aptmts for G n I.
Me-My chest xray was clear. No more fluid in my lungs. Pneumonia is gone. But it left some scarring on my lungs which will heal in time. My ultrasound on my calves also came out negative. No blood clots. We are chalking up all this leg and back and neck and shoulder blade pain to pneumonia recovery for now. If anything persists I will go back after the holidays.
Grayson-we saw Belmonte for a followup from our discharge last week. I always feel better after I see him. He puts it all into perspective. We talked asthma management bc it is up and down w these hospital visits. The nebeulizer has been great! We believe its the steam that is really loosening up that gunk. But the inconsistency of strategies between here and hospital is not helping. He helped us all get on the same page seeing as its residents poking their noses into that aspect while we are there. We are laying off the albuterol. That is supposed to be the "rescue drug" and not used 3 x day if he is not suffering from a full on asthma attach. He gets a coughing fit here n there w the inactivity in the hospital but that is manageable. So now at home we are sticking with the increased amount (110) of Flovent inhaler (protects airways from swelling and irritation) and using saline solution instead of albuterol in the nebuelizer. And from now on he is just going to call me in my room and we talk things over bc the telephone operator game is not working well. I love him!
We also talked about the number of bumps and slight remains of a bruise on the back of his head. Currently, you can tell the back left side of his head is bumpier and raised vs the right side, nice and flat. That initial blow occurred mid October days after the discovery of that respiratory infection. It was the first bruise we had seen since the week of diagnosis. Well, since then he manages to bump his head near or on that same area each and everytime. I know they are typical 2 yr old rambunctious head bumps but I am telling you - this happens at least 3-4 x a week. He falls off the little kid chair, he trips on a train, throws a tantrum and cares less about how often his head bumps the hardwood floors along the way. It makes me a wreck. How do I know hemorrhaging isnt occurring under there? Hematoma?
Belmonte felt his head. He informed me that part of the skull is EXTREMELY thick and is susceptible to cracks in situations like car accidents, falls from 3 story windows, etc. He was not worried. But he was able to describe what it is we are feeling on that peach fuzz head of his. He explained that with that bruise weeks ago blood collected under the scalp and and with the additional fall days after that one more blood. Not tons, but enough to cause a bump and redness that I observed days later. Well, what happpened (and why it looks and feel the way it does today) the blood hardened and calcified. It actually calcified! In that large of an area. There is a calcified mass sitting between Grayson's scalp skin and skull. Wierd. It will eventually go away...in a few years! The reason it bugs us so is bc we have so much bald head to look at these days! The human body really is amazing, isn't it?
The rest of the week lent itself to laundry and prepping for my hospital stay next week. I have to make sure I have:
clean sheets (each overnite babysitter changes the sheets after her stay) for all beds n crib, school clothes, Triston's snacks for next week (we made it easier on ourselves and bought lunch for all of Dec), clean outfits for drooly boy Caden (I swear I have another early teether on my hands) and pack up me and Grayson's hospital bag with clothes, tolietries, snacks and his latest toy craze that I know Areum does not have in the play lab.
I also sorted through some Christmas gifts and started wrapping so I don't have to worry too much about that later. Our last stay should be the week of Christmas. I wonder if we will be home on Xmas day or not?
Oh and Grayson's diet for the week-scrumptious:
bologna for breakfast, raisins, cookies, MILK, broccoli, avocado w ranch dressing, brownies, and popsicles.
Meds:
Bactrim Monday n Tuesday
Mercaptopurine MWF
Nystatin 3x day
No albuterol (until further notice)
Flovent inhaler 2x day
I do have to say that Grayson and I have bumped heads way too many times this week. He has been his typical Jeckyll and Hyde w chemo mood swings on top of it. I have been crabby and he has been to. He has little to no patience (leading to those head bump tantrums) and it seems to dwindle as weeks pass. It's the two yr old junk atop cancer junk. It has been a really tough week in that respect. But , if you had walked into my home any other time you would have seen a 2 yr old playing, jumping, laughing hysterically bc he had many silly moods to him as well. I go from yelling to laughing bc of things like this:
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