New/decompression on 9-9-10

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

Moderator: pmaxwell

New/decompression on 9-9-10

Postby jensma » Sat Sep 04, 2010 6:42 pm

hello everyone! i am new to the site and my daughter was newly diagnosed w chiari 1 malformation with syrinx that extends to lumbar region. in april she was diagnosed w growth hormone deficiency. which is how we found out about the chiari bc we had an mri done to rule out a tumor that could possibly b causing her growth problems. we honestly had no clue that she had anything going on other than she wasnt growing correctly. she just turned 4 in july and is the size of an 18 month old! very small for her age.

jennas surgery is this coming thursday!!! i am totally flipping out! i am in panic mode and trying to pack her entire room for her to be as comfy as she can be. i have no clue what to pack for me and my husband either! we live 6 hrs away from the hospital. we take her to the unviersity of virginia(we LOVE it there). she has (only after finding out about chiari) started saying that she has headaches-they mostly have been in the back part of the head. i just dont know if i should believe her or not. she may have over heard us talking about that being symptoms...hard to tell w her! what do you think?

can you guys share your stories w me PLEASE! any advice you can give me is greatly appreciated! ANYTHING you can think of please share!

thanks
jessica
mom to jenna
jensma
 
Posts: 6
Joined: Sat Sep 04, 2010 8:47 am

Re: New/decompression on 9-9-10

Postby memom » Sun Sep 05, 2010 11:18 am

HI Jessica,

I am so sorry to hear about your daughter's surgery. I will be thinking of you and your family this week, hoping for the best possible outcome.

We had to travel for our daughter's surgery too. We over packed! The things that she wanted the most were her stuffed animals. We took only her very favorite ones. She took her ipod, the music helped to drown out the sound of all the "beeping" that goes on in the hospital room. MaryEmma was not ready to do anything for about 48 hours, then we used stickers and paper to make pictures. We colored and did lots of drawing and watched lots of T.V.

My daughter just entered the room and I asked her what made her feel better while in the hospital. Her reply: "take a suitcase full of stuffed animals, watch T.V., eat jello for breakfast, and take lots of pillows for the car ride home."

As for myself, I brought comfortable clothes that I could sleep in. Our doctor came in each morning very early. I never managed to get up and dressed before he arrived. Not that it mattered at all, but I was glad that I had comfortable clothes I could sleep in and did not have to worry about anything. There was a couch that made into a bed and a reclining chair in the room. My husband and I took turns each night sleeping in each.

I had magazines and books, but really, we were so consumed by everything going on, I do not think I ever read the first page of anything.

I wish you and your family all the best. Please keep us posted with her progress.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm

Re: New/decompression on 9-9-10

Postby jensma » Sun Sep 05, 2010 1:42 pm

Thanks so much!! I aprreciate the info soo much! I will do my best to keep you updated on her. like u, not sure how much time I will have to do anything.
Thanks again!
Jessica
jensma
 
Posts: 6
Joined: Sat Sep 04, 2010 8:47 am

Re: New/decompression on 9-9-10

Postby lhaight » Sun Sep 05, 2010 8:43 pm

My son had surgery 8-9-10 so I will give you my take.

For my son it was comfort items like stuffed animals and his favorite blanket. Movies were a big hit. Sometimes it took a couple of tries to get through the movies due to pain or sleep. Fortunately our hospital was a children's hospital and had absolutely everything - movies, playroom etc. Call the hospital this week to see what they may already have like movies or a playroom. It will leave you with less to pack:)

For us parents, we learned the hard way. Clothing something comfortable that can be layered. We ended up going to buy tee shirts, hoodies and sweat pants. It was just way more comfortable when spending that much time sleeping, sitting and waiting. Also, take comfortable pillows and maybe a throw blanket if your hospital allows. You can always ditch them afterwards if you worry about bringing home anything from the hospital. You will need extra pillows/blankets for the ride home. Make sure your daughter get pain meds about 30 minutes before you start your trip home.

We had friends that made us a goodie bag. Since my husband had this surgery 2 years ago, I can tell you what I have always used out of the goodie bags. Gum, hard candy, and my son liked his favorite snacks. At times that was all he would eat. I also packed footies. My husband likes sudko, but the magazines I took never really were opened.
One last thing, the children's hospital had rooms that parents could stay in overnight. My husband did spend one night there, but I stayed with our son.

Good luck. Our son's surgery went so well! He only needed 12 hours in PICU and a 2 day hospital stay. Fortunately he did not need a patch, so that probably made his recovery quicker. Make sure if to encourage your daughter to move her head as much as she can. It really helps with recovery!

You and your daughter will be in our prayers for a speedy recovery and smooth hospital stay!
lhaight
 
Posts: 12
Joined: Wed May 12, 2010 7:39 am

Re: New/decompression on 9-9-10

Postby jensma » Mon Sep 06, 2010 9:07 pm

Thanks to both of you! I know that I am over packing but I would rather have it than not especailly that far from home! You actually did help me i never thought about taking a bunch of pillows or blankets for the car ride home! I do have a question....she is still in a CARSAET bc she is so small, do u think that we should get a booster seat for her ride home? what you do?

I packed enough for 7days and even thinking of taking laundry detergant just incase! We have a room at the Ronald McDonald house which has washing machines and dryers! Thanks so much for your help! Glad to see I can ask for help and get it!

Thanks
Jessica
jensma
 
Posts: 6
Joined: Sat Sep 04, 2010 8:47 am

Re: New/decompression on 9-9-10

Postby lhaight » Tue Sep 07, 2010 4:43 am

My son is 7 so he was in a booster seat. However, when we came home he slept in my husband's recliner with a body pillow on either side to help him feel supported. We later took one of the pillows and put it under the top part of his mattress. He sleeps at about a 30 to 40 degree angle. He said it helps him get comfotable.

If your daughter is that small, I don't think I would risk a booster seat. But it really is what will make her feel more comfortable. You might want to try rolled recieving blankets to put around her head/shoulders so that her head/neck feel supported in her car seat. If possible I would try to recline the car seat somewhat. Not sure if that is possible. I remember my husband did recline my son's seat for the ride home, but it was still at a pretty high angle - like 60/70 degrees. After my husband's surgery he had a neck pillow and barely reclined his seat on the ride home.

Good luck on Thursday! Here is hoping your daughter has a safe and speedy recovery!
lhaight
 
Posts: 12
Joined: Wed May 12, 2010 7:39 am

Re: New/decompression on 9-9-10

Postby jensma » Wed Sep 15, 2010 8:05 am

Just wanted to let you know that Jenna is home! she done great w surgery and the day after! she did get sick a few times and then realized that if she didnt eat that it wouldnt b so easy to get sick! we ended up staying an extra day or two bc she wouldnt eat....which was ok w me bc we live 6 hrs away from the hospital where she had it done at! and the health care system in our area STINKS! this morning she has a pretty bad headache so please please pray for her!

thanks for all your helpful advice! come to find out i didnt over pack too much!
jessica
jensma
 
Posts: 6
Joined: Sat Sep 04, 2010 8:47 am

Re: New/decompression on 9-9-10

Postby memom » Wed Sep 15, 2010 8:31 pm

Glad to hear she is home! Let her know we are thinking of her and wish her the fastest recovery possible. Keep us posted on her progress.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
memom
 
Posts: 80
Joined: Fri Aug 07, 2009 5:25 pm


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 7 guests

cron