Nate’s in a catch 22 now
AnonymousOctober 3, 2008 at 4:42 pm
Ok, it has been nearly 3 yrs since Nate got a flu shot, 2 weeks later had his Gallbladder out and woke up from surgery paralyzed from GBS.
As some of you know, it took nearly 2 weeks to figure out what was wrong with him while he got sicker and sicker.
He was paralyzed from the shoulders down, had Plasmapheresis 12 hrs worth and had to be hospitalized 9 1/2 mos. It was a horrible nightmare for everyone involved having him 100 miles away.
We were told that once he could transfer himself from bed to wheelchair, he could go home. I could hardly wait until I could get him out of there.
He has been home with us now 2 yrs, slowly improving as far as is possible.
During the time he was paralyzed, his right foot turned under, in and his toes dropped……all at the same time.
There was nothing anyone could do about it except tell us that it would go back when he was able to walk again.
Well, when he finally got to walk 8 mos later, it only made his foot worse.
After being fitted with a big 2 piece AFO and a year of PT, he went as far as he could but not able to walk very far without his legs giving out or losing his balance.
When his Orthopedic dr first saw him, he said he would never want to do surgery on him due to the threat of relapse.
His foot straightened some from the AFO but not enough. It has never returned to a workable position and is now causing major problems with every bone in his foot when he walks, even with the AFO. It is also very painful to walk on.
His Orthopedic Dr. referred us to another Orthopedic Dr. that specializes in ankle reconstruction to see if he thought he could help.
He took one look at the x rays and the lump on the side of Nate’s foot and said it was necessary to repair his foot or he would have many more problems if we don’t, including fractures.
He had new Nerve Conduction studies done at Nate’s Neuro to see which of his leg muscles were getting signals. Some don’t and some do. Some never will due to nerve damage.
Now the problem. When we first talked to the Surgeon, he thought he could get by with Nerve blocks and sedation instead of General Anesthesia.
That made all of us feel reassured.
Now when we saw him yesterday, he says that the surgery will take anywhere from 3 hrs to 6 hrs. It will be a very involved, intricate repositioning of muscles that still work. 5 incisions, holes drilled into his foot bones, screws, pins, etc. There is no way that he can do surgery for that long and not put him under.
He will have to be in the Hospital 2 or 3 days, then go to a convalescent hospital for 6 to 8 weeks after that until his foot is ready to stand on.
I know its Nate’s decision and he is ready to go do it. You can’t blame him.
He wants to have his foot work better. He knows it will never be like it used to be but he still wants anything he can get with it.
Needless to say, I am very nervous about the whole thing. I am so afraid he will wake up paralyzed again.
We will be doing a pre admit meeting next week with the hospital and anesthesiologist. I am going to make sure that everyone involved is very aware of what happened last time. No one wants a repeat of that nightmare.
I feel somewhat reassured that at least we know what to look for this time and that if anything does happen, he will get treatment quickly this time before any damage can be done like last time.
I am also very glad that he will be close by this time. Our hospital is 6 min down the fwy and about 5 min to park and walk in the hospital.
I hope the surgery goes well, he is ok with no relapse and there are no problems with all the hardware.
I’m glad I have good family support. This mama bear will need all of them.
October 3, 2008 at 4:59 pm
My heart goes out to you! I know what you are feeling, Kevin needs a surgery on each of his toes to file the bone down so his toe nails do not continue to get infected. When he was 18 months he had the surgery on one of the sides and they put him under. It will be a 10 day recovery. We opted for local as it is no where near the involvement of ?Nates surgery. We did also talk about an epidural and valium. Would that be an option for Nate, or maybe twi-lite and an epidural? What ever decision you guys come to it will be the right one. I am praying for you and your family. When the surgery is over, Nate will have much to look forward to, WALKING!! That is the silver linning of this dilema. Best wishes and prayers sent your way while you make a decision.
Dawn Kevies mom
AnonymousOctober 4, 2008 at 2:03 pm
Trudy, OMG!!! what hard decisions lay ahead for both Nate and You. Make sure the team is well versed in GBS at your meeting. If you or Nate have any doubts the surgery can always be postponed until those feelings are reassured. I would also make sure all nurses are well versed also, especially with all the auto system that will be affected by the anest, like bladder, bowels and kidneys. With his history, those things need to be monitored closely. Nate and You are always in My Thoughts and Prayers. Huge Hugs!!!
AnonymousOctober 4, 2008 at 5:20 pm
Hi Trudy! Nate sure has had a challenging battle and not much of a fun time either dealing with this. I will keep Nate in my thoughts and prayers and hope his surgery is off success with no problems. Very scary stuff and I know this must be very frightening for you as well. Good luck and please keep us posted. I hope everything goes okay!
AnonymousOctober 10, 2008 at 2:15 am
Nate and I went to the Hospital today for his pre op meeting today.
We met with a registered nurse and she went over all the paperwork, Nate’s Meds list and had him sign stuff.
Then I asked her if the Anesthesiologist was coming down to meet with us.
She didn’t know, so I told her Nate’s doctor said they would.
She called up stairs and after about 25 min one came down to talk to us.
He was really nice and when I told him about Nate having GBS, he became very concerned and serious. We discovered that he is very familiar with GBS and what it does.
He asked a lot of questions about what the GBS did to Nate and what treatment was done and about his recovery.
He was very interested in whether or not Nate’s lungs were affected and if he was ventilated or not. I told him Nate’s lungs were affected but he got by without being ventilated.
He told us that patients who have had GBS often have a hard time breathing after surgery if their lungs were compromised from GBS, especially with a long surgery and his may take up to 6 hrs. He said that if there is a problem, it will show up then. He is ordering a breathing treatment before Nate goes into surgery just to get his lungs ready.
He told Nate not to be surprised if he wakes up with a ventilator still in place for awhile though, just to prepare us in case it happens.
He also told us that GBS patients sometimes have a harder time getting any muscle strength back and not to be surprised if that happens.
The only thing that still bothers me is that he may not be the Anesthesiologist that Nate gets. There is no way to know until the night before when they call Nate. I hope its the same guy though. It will make us all feel a lot better.
I will make sure he tells whoever it is all of his history.
I know I will be scared, and I already am but Nate needs this surgery and he wants it.
Nate’s also getting nervous now that we went and did the pre op stuff. He’s in junk food mode now and thats not good but understandable.
This next week will be tough for all of us but we will get through it.
I will let all of you know how things go next wednesday.
Nate, diagnosed with GBS Jan 06
Hospitalized until Sept 06
Home with us 2 yrs now.
October 10, 2008 at 10:39 am
Sending prayers your way.
Dawn Kevies mom
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