Not recovering as quickly as would like...

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

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Not recovering as quickly as would like...

Postby itsme102376 » Sat Apr 17, 2010 12:40 pm

Hi,

My son Matthew had Chiari decompression with laminectomy and duraplasty on April 14th. He spent 2 days in PICU and it is going on day 4 now. He is still refusing to move his head at all and screams and cries in pain whenever he has to sit up, turn, etc. Physical therapy has come by to see him and they said for the next 2 days we will take it slow by only moving his head up in small increments in the bed every 30 minutes. However, if he is not sitting on the side of the bed by Monday we will just have to force him.

To give you a bit of background information, Matthew is 5 years old. He is usually a very tough kid (he broke his arm at one point and cried for no more than 30 seconds). Has anyone else out there experienced decompression surgery where recovery was slow like this? What helped if anything? Thanks for any advice!

Crystal
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Re: Not recovering as quickly as would like...

Postby tnajk » Sat Apr 17, 2010 7:57 pm

Hi Crystal,

It's a small world. I met your husband and heard of your son this morning at the Ronald McDonald House (where I'm currently staying with my son) so when I saw your post I wanted to respond.
My son had decompression surgery 2 yrs ago now. He was on about the same track as it sounds like your little guy is. I think (hope) you will be surprised and you will find he suddenly feels better and turns the corner tomorrow or Monday. That's what happened with my son. Just when we were really starting to get concerned, he turned the corner! His neck is probably going to be sore and stiff for several weeks. Right now he is probably scared to use it. He'll adjust. Hang in there!! **hugs**
Mom with 12 yr old son dx ACM1 & Pseudotumor Cerebri
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Re: Not recovering as quickly as would like...

Postby Catherine » Sat Apr 17, 2010 9:30 pm

Hi Crystal,

My 4 yr old daughter, Catherine, just had a terrible time recovering from decompression surgery. She was on tons of pain killers and not sitting up at all. On day 3 she was taken out of PICU and they dragged her over to the playroom, she was miserable. She did what she had to so that she could go home and just went down hill from there. She had horrible headaches and vomiting and couldn't stand or walk straight. She had Intercranial Pressure, she was given the meds to absorb the CSF but reacted terrible to them. Went back to hospital to have meds given through IV, became psychotic and was sent home. She continued to decline and was sent back to the hospital for a lumbar drain. We spent 8 days in ICU for that stay and she started to improve at that point. She came home and started vomiting and had headaches again so we took an ambulance back to the hospital. We did another MRI, this time it showed great improvement, and she went psychotic on us again so they released her at 10 at night. Her headaches finally stopped later that week, over a month after her surgery. She continues to have some nausea and some behavioral issues but she is much improved now. She has got her balance back and keeps asking to go back to gymnastics (I'm debating this one, I'm trying to get her interested in something else.).

I hope it is not ICP but with my daughter she was obviously having problems early on. If it is ICP the pain is terrible. Hopefully he will just wake up tomorrow and feel a lot better.

Good luck,

Crystal
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Re: Not recovering as quickly as would like...

Postby itsme102376 » Sun Apr 18, 2010 8:32 am

Hi there,

Thanks for the replies. T my husband told me about meeting you as well. It is a small world :). Last night with Matthew was so so. He ended up with bradycardia and hypotension (low heart rate and blood pressure). That and a couple of other concerns had the RN on night shift calling the doctors in the middle of the night. Instead of us trying to make him sit up as before, they are now recommending we let him lay flat in bed for at least today and reevaluate tomorrow. So, today I am going to just let him rest for the whole day and go from there.

It is a sigh of relief though to hear that not every child gets up 3 to 4 days after their procedure and just walks out of the hospital. It seems there is a wide variety of healing from this procedure.

Crystal
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Re: Not recovering as quickly as would like...

Postby texassyrinx2 » Sun Apr 18, 2010 9:48 pm

You and your family, especially your precious child are in our prayers today and for as long as you need us. I hope you will get some rest as well, while your son is resting. It is so difficult to watch them suffer through this process. I have SM and was diagnosed in 1991, on the 21st of this month it will be 20 years since I got the news. There have been ups and downs, but I did manage to get a wonderful education and had a satisfying career in spite of the problems associated with SM. Now at 54 I find myself totally disabled, but still grateful for every day. You will find that those of us who suffer from these diseases at really a tough bunch. I suspect your child will follow suit!

Keep a good thought and get some rest.

Thinking of all of you,

Prayers are coming your way from a bunch of folks in Texas.

Mary-Ann
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Re: Not recovering as quickly as would like...

Postby itsme102376 » Mon Apr 19, 2010 7:07 am

Thank you for the prayers.

Current word is that they think Matthew's headaches are caused from low CSF. Does anyone know..is this usually caused from a CSF leak or something else? I have tried to do some research but cannot really find what would cause the CSF leak except that it just sometimes occurs when opening the dura mater. I have also found if that is what it is...steps are conservative at first, (bedrest, pain meds etc). If not better in 2 to 3 days with bedrest then the possibility of shunting and exploratory surgery. Does this sound right?

Crystal
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Re: Not recovering as quickly as would like...

Postby Catherine » Mon Apr 19, 2010 10:52 am

Hi Crystal,

I tried to post yesterday but it did not go through. My daughter had the low heart rate as well (down to the 40's) because of ICP that was caused from too much CSF. It is possible to have the headaches from low CSF and that was considered with my DD, however, in the end the nsg decided to try draining her and it worked. She had 2 CT scans and 3 MRI's during all this which clearly showed that there was too much fluid in her brain and it was pushing her brain to the left a lot. Have they done any scans, or put in a pressure monitor? One thing they did with Catherine was to have a Neuro Opthomologist check her optic nerves. Her optic nerves were fine which never made sense with all the pressure she had. I would really see if they can monitor the pressure in some way just to make sure they are going down the right path.

Good luck,
Crystal
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Re: Not recovering as quickly as would like...

Postby itsme102376 » Mon Apr 19, 2010 10:49 pm

Well, today went a little better. Now the MD does not think it is low CSF. They think it is just muscle pain from having to cut into the neck muscles during surgery. They reevaluated the pain medications and switched some things around. By this evening Matthew had gotten up to a chair 2 different times. One for about 30 minutes then for about 5 minutes. He did have some nausea and vomiting with it though. He is also starting to move his head and neck a bit and help out more with lifting his head when the nurses need to take a look at his bandage. He also asked to take the steps back to bed when leaving the chair. I of course had to help him, as his legs were very wobbly. Hoping he continues to do this well and maybe take him via wheelchair to the playroom tomorrow for a reward. :).

Crystal
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Re: Not recovering as quickly as would like...

Postby tldrake14 » Mon May 03, 2010 2:16 pm

I hope Matthew is doing better today.

My 13-year-old son, Aaron, had decompression surgery on March 31. The first 2 weeks were absolutely HORRIBLE! The pain is basically gone now but he still isn't sleeping very much. Is Matthew having problems sleeping?

Keep your head up. I know how hard it is to see your kid in pain. I am sure you are doing what we are - one day at a time.

Trinette Drake
San Antonio, TX
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