[Photo: 1/05 - 2 month old Bax and Mike - in the witching hour. Yes, Dondon, Kathleen, Cheryl, Randy, and all those other pregger people whose names I can't divulge... between the hours of 4 and 10 pm lil' babies do a lot of this.]Dr. Andrews said one thing yesterday that seems to have changed how I’m starting to think about this whole thing. He said that we need to take it week-by-week – not even day-by-day. One week at a time. I think that helped me reorient myself towards what is inevitably a chronic situation.
This morning I got up with Bax at 6:15 am and then returned to bed to sleep from 8:45 am until noon. I guess my body needed permission to slow down in its approach to all this.
Mike’s exhausted today. Not much of an appetite. Got radiation therapy a little late today (1 pm) because this morning his blood count was too low and they needed to give him some blood before radiation therapy. Dr. Andrews talked to me about it a bit. It seems Mike was looking a bit anemic this morning. He’s been so sick with fevers and had so much blood drawn and been so dehydrated he just didn’t have a lot of blood. The new blood should help him all around. BP is a bit low (90/60) but he has to be on meds that keep it low because his heart rate races without it. This morning PT came in and sat Mike on the edge of the bed and his heart rate jumped over 140.
Lovely Judy (NP – nurse practitioner) came in to chat with me at length this afternoon. She told me that it is quite a challenge keeping Mike’s numbers in normal range. For instance, this morning Mike’s nurse was just 1 hour late giving his DDAVP and Judy came in to find the Foley bag (catheter for urine) so full it was overflowing on the floor. His sodium had jumped from 132 to 141 in a matter of hours. Interestingly, Mike seems to do better (cognitively and in terms of wakefulness) when his sodium is a bit higher (140-145) rather than in the lower range (130-140). Maybe his body has just gotten used to peeing more and having higher sodium. Who the hell knows. I can barely make heads or tails of any of this. I asked Judy what the heck they think the deal is with Mike’s heart rate jumping to high and she said it’s possible that it’s simply due to the excess pressure on the brainstem.
Just a thought - the term “benign” is such a misnomer for this tumor. No, it’s not cancer, but it’s not “benign” either. To review… the parts of Mike’s body and functioning that have been affected thus far:
Vision loss, No short term memory, Extreme fatigue, Fevers, High heart rate, Incontinence, Diabetes Insipidus causing dehydration and high sodium, Hallucinations, No production of cortisol or testosterone
And then there are the indirect effects: Muscle weakness from bed-rest, Infections likely from foreign bodies (like vp shunt), Appetite loss likely worsened by radiation.
Oy yoy yoy.
13 comments:
Hi Danna - I'll post 2 questions publicly in case others are wondering too ... my Mike & I would like to book a dinner visit with your Mike next week. We have a system where I pick him up at a train station after work and we get into town by 6. Would that be too late? Would he be too sleepy by then?
Also, was there an answer on the ICU + Radiation patient + pregnant visitor question? I'm willing to risk that our in utero babe isn't going to 'catch' radiation from Mike, and though it may be tempting, I'll try not to lick too many surfaces as I roam the hospital halls.
Congrats on your morning nap. I am proud of you.
Love and kooshes,
k i k i
from someone who's been at the hospital at dinner time: his dinner usually gets delivered by staff at 4:30/5:00. Don't know if that helps with planning.
Any suggestions on toys/things to keep Mike occupied?
Kiki... or should I say k i k i ?
I think anne's right.. a 6 pm arrival would work just fine. I, too, asked about the radiation therapy today and they say Mike should pose no risk to anyone since he is merely a recipient of radiation therapy and has no actively emitting radiation chips housed within his body (which is another way that some tumors can be treated).
If folks would like to donate blood, given the fact that Mike's certainly drawing from the pool, that would be great. He's O something. positive, i think... but if people would like to donate blood in general, now that Mike's a recepient of it, it might feel nice just adding to the supply regardless of your blood type.
I feel sad that some folks get "sleepy" mike and some folks get "alert" mike. It's so random. I do think that weekends - particularly sundays - he might be a bit more alert because he had a couple days off from radiation (sat and sun). His appetite is definitely affected by radiation, too.
love and hugs to you and yours.
danna
ps: at bedtime with baxter, I said "goodnight" to all the people that we know, one by one. after each name he did his darnedest to pronouce it himself. such a cute cute thing to hear. He's good with first consonants... after that it's questionable in its accuracy, but still awful cute.
RE: toys/things to keep mike occupied -- I'm out of ideas. He's got a great supply of fun things to fool with there... and sometimes he'll pull at his wires in spite of them. Keep in mind his vision is terrible. He can't read a thing. I gave him a 4X6 photo of baxter and he turned it on its side and thought it was a photo of my dad. Music is a big hit. His hearing is perfectly fine and he loves upbeat music. If anyone can think of some fun thing he could do with his hands that wouldn't require too much vision that would be great.
x0
danna
Any requests for a mix CD?
hi Danna, no problem picking up Mike's requested pasta dinner. Anne had vistied with Mike for a bit and was out of his room when I arrived so we went in together. Anne announced that she was back and he opened his eyes and looked across the room at me and said "hey Kath". I was geeked he knew I was there.
We talked with him as we got his dinner ready. He was very sluggish but responded with a grin or "that's nice" when I told him what was going on at work and told him all the folks who were asking about him. I think Mike knew the names and asked "now who else?" like he was thinking over the list of people and searching for who I had missed. When I said Craig was asking about him he smiled and confirmed "oh yes Craig" as though he was checking him off the list.
Mike wasn't very interested in the pasta (although it looked much better than the roast beef drowning in gravy-stuff that the nurse brought in.) He drank a little water and a few sips of Boost. Nurse Colleen was in a couple times - took his temp and changed some fluids going in and out of Mike. Earlier when Mike was awake, another nurse (from the doctor's office) came in and asked Mike some questions and talked with Anne about the blood he was receiving. She said she would return later to check on him. Sorry, I don't recall her name. We told her that nurse Colleen would know best how and what Mike had done today.
I read a couple of the cards to Mike but he was dozing off. You should find them there as well as (Famous) cookies from Julie and a musical gift from Kim. (Anne played the spoons for us which roused Mike a bit). We left him with Kevin about 7:30.
Sleep well. Kathy
Danna
How about some kind of "book on CD"
It might be soothing to Mike to just hear someone reading to him. I'd have to check, but maybe there is something out there with short "funnyisms".
Please let me know.
xoxo
Robin
Hey Danna,
Is the hospital using plastic spoons, knives, forks, etc. for Mike's meals? You might want to request that.
My mother, who underwent radiation for lung cancer, said that food tasted wierdly metallic from the silverware once she started radiation.
Having plastic utensils really takes that edge off and might increase his appetite.
And of course, since we all readily steal from every fast food place, so Mike could have a steady supply if TJU staff forget.
Baxter and I had a whopping good time in my dream last night. We were having an awesome time hanging out, and then you came in with this crazy blond wig/purple hat combo thing and put it on and Baxter laughed and laughed. It was a nice dream.
Love,
Beth
Danna, Here is a web site the company is called "A Pocket Full of Therapy.” (http://www.pfot.com/) They have allot of different sensory items. It seems to me thought that an Occupational Therapist there in the hospital should be able to consult on Mikes sensory needs. They may be able to develop what they call a "sensory diet" for Mike. The sensory issue for us in our home is HUGE because of my sons Autism. A good Occupational Therapist is a god send when it comes to sensory issues. It sounds like an OT consult may help get Mike settled. I was going to order a few things but thought ....hey they probably already have these things there in the hospital. Please let me know you can certainly look around HLC and see if you see any thing that might be interesting to Mike in the short term. Play dough is a huge hit both here at the school and at my home. It may do the trick for Mike. …. Watch the salt though…. Lots of salt in play dough. Elizabeth (HLC)
Hi everybody - Mike has a bunch of books on CD already. I ask him every day if he's interested in listening to them and so far no dice. sorry to pop that balloon for y'all
Books on CD seem like they could be difficult for someone with short-term memory difficulties...but what about music? Would Mike like to hear more music CDs?
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