Have to leave children for another medical treatment
Moms View Message Board: General Discussion: Archive January 2004:
Have to leave children for another medical treatment
Well, here we go again!!
I have an autoimmune disease, and possibly MS. I live in SW Virginia, and my neurologist who is taking care of all my treatments and such is at UVA in Charlottesville, five hours away.
I just went for a follow-up appt. this past friday, and I always have to go up the night before my appt. so my parents keep my children.
For this treatment (an IVIG treatment or immunoglobulin transfusion) I have to be in the hospital for three days, given I have no complications. I had my last round of transfusions in October, and I am scheduled for my next the first weekend of February. These are risky, and can have complications, so I get so upset and nervous when I have to have them done.
How do you ever get used to leaving your children for medical treatments or for any other reason, for that matter???
I miss them terribly. My son who is four does okay with it now, but my dd who is seven has a terrible time. She is over emotional and upsets easily because of my illness and she becomes an absolute trainwreck when I have to go back to UVA, even for follow-up appts. She remembers me before mommy got "sick" so it is extremely difficult for her. However, this is just a way of life for my son because I got sick shortly after he was born...
Any suggestions on what to say or do to make this easier on them?
Geez, I'm so sorry to hear this. I have no suggestions, it is hard to leave my kids for a happy reason let alone for medical treatments.
I assume you probably call and talk to them, especially to say goodnight. Maybe you can give them each a framed picture of you to keep by their beds when you go away.
Maybe you could write each of them a note for every day you'll be gone. They can open one note per day. If you're good at writing stories, write them a story for each day, or every other day. Record yourself reading to them? Do a treasure hunt of some kind? Each day you're gone they get more clues?
Good luck.
(((hugs))) I'm so sorry you have to go through this. No advice, just wanted to offer some e-hugs.
First off...so sorry to hear this. MS is a tough diagnosis, both emothionally and physically. But I do have words of encouragement. My mother had MS. She was officially diagnosed when I was 11, but started having symptoms closer to when I was 7 or 8. We went through this. Right now your daughter does remember those times when you were healthy. But in the long run, it just doesn't have to be a big deal. I have some vague rcollections of my mom walking, but my mom was my mom and I never really thought oh, well I guess she can't do that anymore. There was a bit of an issue when she was not able to drive, but this came along when my brother was old enough to drive, so we just adapted. My advice though, is write a journal about this, to them, keep it until they are adults. Just be candid with them, kids are tough they can take it. No it won't be easy, but just like you are dealing with this they are grieving too.
Good idea Kaye and I agree. Kids cope well with the right support behind them they don't skip a beat. A journal is a great idea. Your life story your feelings and thoughts.
As far as leaving and DD having issues with it I honestly don't think there is much you can do about it. There is no clear cut thing to do or say to heal a hurting child. But I like the idea of a special picture. They sell pillows with picture pockets in them maybe you could take a picture of you with DD and put it in a special frame or one of those pillows. Maybe record you reading her favorite book or singing her favorite song. Give her a tape recorder that she can have for her own personal use that she can listen to you on. She needs a way to feel connected. Maybe sleep in a t shirt and let her pack the shirt to sleep in while you are away so she can smell you close to her and feel your warmth. Give her your bed pillow to snuggle when she feels alone. Give her a little bottle of your perfume so she can give herself a spritz and smell you. I mean that is what she is missing is a way to feel comforted/ connected to you. But to reasure her I don't think that there is anything that can be done. You can't make this go away and you can't fix it and even us as adults have fears of the unknown. What about taking pictures of while you are in the hospital. your self your nurses Dr ect. Make a scrap book of the pictures with a little story under the pictures. So next time you can prepare her by reading this story. And maybe your mom or dad will read it to her while you are gone. OR you can tape yourself reading it. Then she will see like a shot of the outside of the hospital as you arrive, your room, the IV bags, the nurses, the dr etc. Tell the story at her level. But that way she could in the future not feel in the dark as to where you are going and what you will be going through. I know that doesn't help right now but it might in the future. And it might help clear up some of her fears when you return. Just a thought.
Big hugs and good luck....
Hugs to you. I have no idea how to help her (and you) thru this. Just have lots of support from family and friends. I am one to believe that honest conversations fit for age are a great idea. Nothing like our imagination to upset us. The facts make it easier and less scary.
When I meet people who suffer a major life change, I say a quick prayer to God that if I ever experience this to give me the strength to remain strong and possitive outlook. I am amazed at how well others with disabilities (like and arm or more missing, brain injury, MS and so many other things) have the will to conquer and continue on. My goodness, they get more done in their life than I do in mine. I pray for that God will give you the strength you need and the words to help your family too.
Hi....I just read your post and wanted to introduce myself...I am Marsha and I have an autoimmune disease too....I have Myasthenia Gravis and I was diagnosed at UVA too and treated there as well as having a thymectomy for the MG there....I had a wonderful team of Neurologist and I still miss them. I lived in WV at the time and so I traveled as well for my appointments and so forth.
I now live in Charlotte NC (on our way to the SuperBowl...YEAH).
Yesterday and Monday I had my MONTHLY IVIG infusions....I used to be able to get mine at home with a home health team, but I developed serious clotting issues and now Im pregnant and so they feel more comfortable with my doing it on an outpatient basis at the cancer center. Is this an option for you? Perhaps home health or outpatient daily at a hospital close to home?
Do they have any idea which autoimmune disease you may have besides possible MS?
How do you do with the IVIG infusions? Do you feel better immediately or does it take a few days? Also, do you get a HORRIBLE headache afterwards? YIKES, I am so suffering one now.
Im sorry to ask so many questions, I just like sharing stories with people that I have something in common with and not many people have to have IVIG infusions that I know.
Hope you can find some peace with this....
One more thing and I promise to hush....When I first had to start getting my infusions at the cancer center, I was so depressed. My daddy died 2 years ago with cancer and it just brought back so many painful memories seeing all those cancer stricken patients....but now it has made me more positive with my disease and I thank God that I am going for my IVIG to maintain some normal quality of life, while most of the people there getting infused are fighting for their life...
Ok...hope to hear from you soon....
Good luck.....
Hey guys!! You all really have some great ideas! Thanks!
Yes, I do believe honesty is the best route to go. I have always said a child will imagine things much worse than they really are if you are too secretive about it.
Marsha!!! It is SO wonderful to meet you!!! I am so excited...not that you have to go through that, but just to find someone who understands!
This is only my second series of these treatments, and I have had so many reactions to different meds and such that they are doing them up there for now. Maybe if I do okay with this round then we can see about having them done closer to home... We live in a very small area, but we do have a cancer center about fifteen minutes away from home. That may work...
I had the most HORRIBLE headache afterwards. It felt like my head was going to explode when I moved it. And if that wasn't bad enough, I was throwing up constantly, so that did not help the headache. AND I was travelling the five hours back home!!! I told my hubby NO WAY am I doing that again. I was sick for a week afterwards, but the headache eased off a little after the first day. Told him we would get a room for the night and travel home afterwards if I have that problem again.
Do you have the headaches after each one? Yuck!!!
Oh yeah, forgot to answer your question... No, we are not exactly sure which one I have. We just now figured out that it is an autoimmune disease. The dr. sent some of my blood to Mayo to have it tested and we haven't gotten the results back yet. He said those tests may give us some answers.
I feel the same way. Meds didn't help me much, and I am so thankful to God that he finally led me to UVA where they weren't afraid to try these treatments on me, because as you said, not many people have these done.
So glad to meet you!!! Stay in touch with me. It helps to have another mother who understands!
And thanks to everyone for all the great advice. I definitely will be using some of it!
No advice but hugs to you.
You and your family are in my prayers.
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