Posted by Steph in
Chemo Round 3, Head Wound, Hospital Stay, on Tuesday, October 17. 2006 at
Thanks for all the comments and emails you sent me with thoughts/advice about Asher going home. There is no definite answer yet, but we're starting on a path so Asher can go home, soon, if all goes well. One of the main things, as far as meds are concerned, is Asher needs to be off his PCA....so they weaned him off his morphine today and at 8am tomorrow it will be gone. They are replacing it with a pain med that can be given via NG tube.
The weekend nurse practioner thought like a couple of you, get me doing hands on while I am here so we can show the oncologists I know the stuff and did it before going home. So, yesterday I ran three antibiotics and flushes (one nurse supervising), did his PICC Line dressing change (two nurses supervising), did his head dressing change (2 nurses supervising), started his NG tube feed (formula), and, since he threw up his NG tube at 7:45pm, I put in his new one at 9:30pm (with three nurses supervising). Today I did his head dressing change, again, this time with the plastic surgeon supervising. I also started his NG tube feeding and gave meds/flushes via his NG tube (with one nurse supervising).
It was cute, today, when Asher talked to Scott on the phone he said, "Mommy put my tube in. I like mommy to do it, not the nurses." And, a few minutes before that he was telling Scott about his head dressing change and said, "Mommy had gloves on, when my hat was off, she put my bandaide on."
During his head dressing change today, I noticed his head looked very different. I couldn't really see the bone because there was a lot of fluid that built up there. The plastic surgeon said that is normal when kids start to get more active and move their heads a lot. She said it is OK right now but something we need to really watch. If it gets worse, they are going to have to do something about it (not going to guess what, but another surgery for sure).
I have been told many things the last couple of days. I just found out today that the neurosurgeon is very concerned about the bone flap that has been exposed because he did not put back the original dura after the craniotomies. I'm not sure I said that technically correct, as I got this info from the plastic surgeon, not the neurosurgeon himself, but that's the jist of it and he's very concerned about infection, still. The plastic surgeon said she will not "close" the wound yet because of this worry. She said the exposed bone should get more pink as it heals and that would be something they want to see happen (of course, now with the fluid build up, not sure you can see much of anything). The neurosurgeon wants to wait quite awhile for healing before another surgery....and even longer before chemo....I have no idea what number of weeks we're talking here. Basically, it is several people (oncologist, neurosurgeon, plastic surgeon, and head start protocol doctor) with a lot of different thoughts, worries, concerns, and they need to all talk and come to some kind of "plan."
I'm not real optimistic these days as far as "plans" are concerned. As we can see, planning is difficult when we just don't know how Asher's body will react to a course of chemotherapy. I really am having a difficult time with the unknowns right now. I'm sad. I'm sad that my son has a hole in his head. I'm scared. I'm scared the tumor is going to take advantage of this break from chemo. I'm frustrated. I'm frustrated because I have no control and feel so helpless and I know all I can do is love him and try to do what is best for Asher today, which feels like not enough. I have to trust. Trust the doctors will choose the best course of action for Asher's treatment with all their expertise. All I can do, as I said, is love Asher and do what I think is best for him today.
So, like Scott said to me, even if we can't take Asher home, where I need to take care of him, I feel like I accomplished a lot and spoke my heart. I've done a lot of difficult things in my life but nothing has been as important to me as being a mom. Cancer moms (and dads) are expected to do a lot of things, including giving shots, hooking up IVs, and doing dressing changes at home....no matter if it is exhausting, it is important to remember this is all short term, kind of like having a newborn and I've done that before, times three. They have always told us that home is safer as far as less exposure to illnesses and kids heal better at home (that's why Asher was always sent home after his craniotomies so quickly) and we will have clinic visits and we always have home health to call or the hospital nurses or clinic to call. Regardless of what I want, the doctors and nurses won't let me take Asher home unless they believe he will be safe.
Asher's counts 10/16, 4am, finally going back up:
We are so proud of you, Steph (and Scott), for being "hands on" parents for Asher. You have learned so much and are doing so much for him and it brings him so much comfort to have you taking care of his needs. You are both awesome and we admire the strength you both exhibit. We pray for patience and strength for you daily and trust that God will bring you through this journey with Asher one step at a time, one day at a time, with love and support from family and friends. When the going gets tough, the tough get going - this is the spirit we see in you two and in Asher. You are doing a great job!
Hi Steph. I heard a cancer survivor recently speaking about a medicine (not a nutritional supplement or herb, but medicine) that boosts the immune system. I wondered if Asher's doctors could or have considered this or if you or others caring about Asher have heard about this. Please forgive me if it is out of line to say this. There are a zillion things to consider and I know Scott underwent an amazing research. Will continue to pray for the guidance of the medical team. Hooray for your ability to put in the tube and do all that you do! Of course you are scared about some things, but hooray for your courage and abilities! Lots of love, Aunt Rochelle
My heart hurts for you, Steph. I know that you have been through so much in these past several months and I know that the future is scary. I don't really even know what to say to you, but to tell you that I care and that I'm praying.
Just wanted to check in and let you know my heart aches for you, Scott, Asher and the girls - I will continue to pray for a quick healing of Asher's head and a complete recovery for him. Hang in there - just being there for him is such a wonderful gift!
The first time I hooked something up to Steven's IV I was terrified that somehow I'd introduce some contamination, or get too much air into the line, or do something wrong that would harm him.
But it turned out to be easy. Changing the dressing was trickier, but over time it became second nature. Like everything you practice and learn.
Whether or not you can manage it at home has more to do with your attention to detail, your desire and motivation to do it, and your self-confidence than credentials, you're already getting your medical training in the hospital.
If something goes awry or you feel uncomfortable, then you can always take him back. I hope things work out so you don't have to stay if you don't want to.
There's no place like home.
Jer 29:11 (NIV) "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Hello Steph, Im continually praying for Asher's recovery. Im just concerned with the fluid you wrote about in your entry. My grandma had debridement as well and it was long journey to healing. I hope Asher gets to recover soon so you can push on with chemo. Just stay as conscentious in your care, and know you are doing your best. The wound is a bit big, so you might need to wait awhile until it fills up again, just assert your concerns esp if you have a gut feel something isnt right. We mom have a gut feel which is almost always right I know doctors are trying hard to avoid infection but then they are not with your son 24-7. I will pray you get to bring him home soon.
Hi Steph, Asher and Scott,
I just got back from my trip and have read your journal a lot while I was away. What an amazing little boy to take so much in stride. I am looking forward to seeing him- can he have a visitor this week?
Much love and prayers,