Posted by Steph in
Chemo Round 3, Head Wound, Hospital Stay, on Saturday, October 14. 2006 at
I'm creating a spreadsheet right now so I can prove to the oncologist that I can care for Asher if he comes home. He needs 2 antibiotics, NG feedings, and morphine. Vanc over 1 hour every 8 hours, Ticar over 1 hour every 6 hours but not at the same time as the Vanc, and feeds over 12 hours once a day. He will get the antibiotics till 10/28. He can also start eating by mouth if he wants again and I think he would if he came home. He is still vomiting one time a day, but they think that is because he was throwing up several times a day for three weeks.
From what I remember, surgery can't happen for at least two weeks from 10/9. But several people (surgeons) need to get together to talk about this.
Maybe the only thing that would be troublesome is driving to the hospital every other day for blood draws to test for platelets (since they want them above 40 and they have run low again today).
I would also have to do his head dressing changes every day....as well as his arm (I think once a week).
So, that's where my head is at right now....I have so many emotions about where we are at with Asher's treatment, including some anger. We probably can't return to the Head Start III protocol and radiation is out of the question for some time now (although we had hoped to avoid radiation by doing Head Start III (agressive chemo and transplant)). I am trying to stay positive. It does take effort some days to stay positive, but it is all the hope I have. Hope Faith Courage Love....that's what is on the Angel Adventure T-shirt. It is beautiful.
*****Here's what I came up with*****
midnight Ticar start
1 Ticar stop/flush
2 Vanc start
3 Vanc stop/flush
6 Ticar start
7 Ticar stop/flush
8 NG feed stop
10 Vanc start
11 Vanc stop/flush
noon Ticar start
13 Ticar stop/flush
18:00 P-antibiotic (once a day)
18:30 Vanc/Ticar/P stop/flush/start/flush
19:30 Ticar stop/flush
20 NG feed start
Does look busy....but doable....
please, know I am here for you to talk. 757 934 0703. know you have support, but I had anger as well...it is hard. home, to me, sounds "doable"
the meds, no big deal..you are intelligent, you can do it. the home health nurse can help,, and he will, though they may tell you otherwise, he will be better if he can get home...the blood draws, why cant the nurse//you//someone do them and drive them over, rather than take him.....lots to work out, not trivial things, but doable..and, why keep him there for all this time. .....Have you talked yourself with Dr Finlay?? You can, you know..he even answered me online about some trivial meeting...you have had good advice along the way, I know, and probably have done//thought of all this..am here, just to encourage, you know best for your child. Liz went home with fevers of 103, but, we had to go home, it was just our time to,....
we are here with you, and praying for you all.
You are a great mom Steph, you can do it I am sure. While I know you want him home I am sure the Dr's will decide what is best and if that is you taking him home then home he will go. Hang in there!
You can absolutely do it! I can only imagine how badly you want him home! Still praying for you daily!
Steph- I think God gave you the gift of organization for this reason. You are an awesome mom- no question. Commit it to prayer- and God will give you a peace- either way. I'm still praying over here.
When we were at St. Jude, Steven got neutropenic fever (no great surprise). We went in, they started IV antibiotics, and his fever went away. He was feeling great but he was still neutropenic so they wouldn't let us go home.
I begged and begged and finally got them to let me take him home while his ANC was under 300, so still neutropenic.
He did great, I gave him the IV antibiotics at home, also IV antinausea medication.
Our schedule was nothing like yours, but Asher's schedule looks doable. As you've observed watching the nurses, hooking him up to IV medications and changing the dressing isn't rocket science, all it takes is some attention to detail.
See if the nurses will let you do his entire routine for one or two days, they can come in and supervise. That was how I finally got them to let me take my boy home.
As we all know, there's no place like home.
It does look tiring and it does look doable! Anything is doable to a determined mother/father/family who want their son to get better! Haven't they realized that yet - LOL! You would have sdome help with both of you being at home and some family, right?
Have a great day!
With my Tori I did a NN tube for a year, two separate courses of vancomycin and dressing changes to the back of her head for about 6 months.
I wrote on PBT but thought I would also write here that one of the devices they might not tell you about but were a life saver was elastomeric devices (Infusors or Intermates). These are little grende shaped things that just screw into the end of the line. They deflate over the required time and then all you do is flush with a push. It is so much easier- rather than having to deal with setting up the antibiotics with the lines and then running a flush.
I think the reason they don't tell families about them is I believe it is mor expensive; however, being out of the hospital is less expensive than being in the hospital so I think most insurance companies will pay for home care antibiotics.
We also did a year of NG tubes. It is learnable.
If you ever want to talk don't hesitate to call.