From The Notebook
3-13-14
(written by Diane)
1:30 Pain Team came in. Dr. Knight very happy w/how he looks.
- no changes to pain regimen.
Texts between Mom and Diane
Tell Mat if he wants any outside
food to let me know. I was thinking of picking up
some cauliflower, carrots, and broccoli from
Golden Corral.
Sent March 13
(1/2) Hey Mat suggested that I go
home and said he didn’t mind being
alone for awhile (working on paper
work for next couple of hours). I
am starting to crash so
(2/2) I’m leaving now. Danielle
will be here around 4ish. All docs
said all is good and he looks good.
Notes caught up.
Rec’d March 13
I’m only 15 minutes out.
Sent March 13
Perfect!
Rec’d March 13
Continued From The Notebook
(written by Me)
3:00 - here - massage therapist was here. (part of the palliative team)
worked out co-pays (will write a separate post about this)
4:00 Physical Therapist - good work out.
8:30 pm started chemo Etoposide.
8:50 checked stent and stitch
10:00 pm started Ifosfamide
**strong hiccups and neuropathy in fingers
Thorazine 25 mg for hiccups - made Mat shake and feel funny but stopped hiccups.
3-14-14
1:30 am
every time Mat gets out of bed hiccups.
Ativan - helped and he almost fell asleep but then got up to use the bathroom.
Hiccups again!!
** possible drain put in lung on Friday
Tough night until 1:30 am because of the hiccups. But when he finally fell asleep he slept until 6:00 am when the nurse had to take blood - he had a short conversation and when I came back with coffee he was asleep again!
Short conversation was concerning blood type and possible transfusion because his hemoglobin is down 7.4 - should be 8 or more.
Good news - his bilirubin is down to 4.1.
I was under the impression that the doctors expected it to go up with chemo.
For chemo - when he gets the second one Ifosfamide - you need to stay aware of what is going on with him.
8:45 signed consent for blood transfusion
Ate a good breakfast
2 cereals milk sugar 4 oz
prune juice 4 oz
OJ with medicine 8 oz
water w/pills 4 oz
biscuit w/jam
9:50 Chelsea from Physical Therapy came in - Mat said he wasn’t up to it and fell asleep mid-sentence.
**He should improve after transfusion.
10:00 Dr. Creelan and team - no more Allopurinol (this had been prescribed at Zhills hospital)
Prefer to cut back on Ativan
No more Xanax and sleeping pill
streamlining medicines
Benadryl only as needed for itching.
He needs to continue to get up and move around to prevent bed sores.
Dr. Lawrence (pain team) says Mathew needs to sleep off extra meds
1:00 for pigtail into lung
blood transfusion today
haircut (this is the actual day of the haircut. You can go back and look at the pictures and see how worn out and medicated Mathew is at this point.
ICE CHIPS ONLY FOR MOST OF DAY
11:00 - still sleeping
(Diane writing now)
Transfusion set for 4 hour drip (11-3/ 3- 7 approx)
**Sent lunch away. I understood there was to be no food or drink until after the procedure. When PT came in Mat asked nurse if he could eat and was told yes ——Big Mistake!
- shaved head
- -Did PT
- Jake visited
- Dr. Knight came in.
- Social Worker came in (dropped off forms)
**postponed lung drain and port because ate some solid food after he was told he could. Grrrr!
Diane writes
“There is no room in my life for negative thought or emotion. I will be optimistic, energetic and solution oriented. I will give honor, glory and respect to all that I come in contact with. I will be open, honest and sincere - relying upon God for all strength and understanding. May all that I do glorify Christ.”
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