Archive for November, 2007

Being Thankful…

November 25, 2007 | Updates

Things have been busy around here.  Samuel went to church just 2 days after his surgery and participated in the Primary Program.  We recorded his “speaking” part into a switch box and he pushed the button when it was his turn to “talk”.  I actually didn’t think he would make it through the whole 3 hour block of church, but he did wonderfully well.  He actually goes to Primary by himself each week while I spend time in Nursery with Nathan and then in Young Women’s.  The Primary is great to watch out and care for him for those 2 hours and he loves being with the kids and especially watching them sing.  I appreciate them all so very much for helping us to make church as “normal” as possible for all of us.

Samuel attended school all the next week with no problems really.  He had some residual pain for a few days that we treated with tylenol and ibuprofen.  Changing the dressings on the new tube was a huge ordeal for the first few days because it was so painful.  But after about a week, I was able to change them without any help from anyone else.  I found that as long as I did things slowly and allowed Samuel time to deal with the discomfort, he was pretty good to let me change them without too much of a fight.  I am going to try and take him to see the doctor sometime this week though because the area around the tube is still fairly red (just about an 1/8th of an inch out from the tube), but there also appears to be some scar tissue growing around the outer edges of the incision and that is not supposed to be there.  So, I’d like to just make sure things look the way they should. 

Otherwise, the tube has been a very nice thing.  It took me a week to stop looking for the end of the nose tube when I would go to move or lift Samuel because we’ve had to do that for 2 1/2 years to keep it from getting caught on things and pulled out.  It was strange to realize just how much attention we had paid to it.  Below is a picture of the new tube.  You’ll also notice Samuel’s little ribs.  He actually weighs about exactly what he should, but because he isn’t mobile, he doesn’t breathe as deeply as he should.  He mostly breathes with his abdomen and does not use the muscles in his chest as he should.  We will hopefully start a therapy in April (in Canada) that will help to remedy his collapsing rib cage.

We celebrated Ben’s eighth birthday a few days before Thanksgiving (see picture below).  We drove to Orem and stayed overnight at grandma’s house and had a fun little party for him at his Nana & Papa’s house.  It was a good trip and the kids slept well.  It’s nice to be able to travel with Samuel without quite so much equipment as we used to require.  We were also able to visit some friends in Payson that evening.  Thanksgiving was nice.  We drove to Tom’s sister’s house over an hour away and ate dinner with them in their new home.  Samuel had a good time and even spent some time watching Ratatouille and Shrek 3.  It turned out to be a nice day.

So, that’s about it for now.  I’ve been bad and haven’t been taking Samuel to therapy very often.  Honestly, I got tired of it.  I know that’s a terrible excuse, but it’s the truth.  I got tired of going for an hour and letting the therapists watch him.  That was really about all we were doing.  I miss Ryan, our old physical therapist.  He was always coming up with new ideas and new exercises that we could do with Samuel at home and I felt we were accomplishing something when we were with him.  And I’ve about given up on finding an experiences speech therapist.  Everyone of them who has worked with Samuel has pretty well been at a loss on what to do with him.  I don’t know.  I guess I just decided that working with him at home is doing him just as much good and it saves us a trip to Logan and back.  Maybe when the holidays are over, we’ll start up again.  But for now, I need a break from it.

We did get his walker the other day.  We won’t really be able to try it for a few weeks until I am certain it won’t hurt his stomach at all.  I don’t want him to associate the walker with pain, so we want to be really careful there.  We do have an appointment with NACD this week to redo his home therapy program.  I’ve been a bit frustrated with that program for a while also.  I guess maybe I’m just a little frustrated overall that we haven’t seen a lot of physical progress in Samuel lately.  But I know I just need to be patient.

That being said, I am so thankful this year for all that we have been blessed with.  I am so thankful for the little boy who graces our life each and everyday with his contagious smiles and beautiful auburn, curly hair.  I gave a lesson in church today and talked a little bit about Samuel’s accident.  It caused me to reflect for a moment on the little boy he was before his accident.  I really haven’t done that for a long time.  It reminded me of just how close he and I were.  He was my little busom buddy and we did everything together.  He was fun to have around and had such a wonderful smile.  He lifted me everyday of my life.  He was such a joy.  I guess not much has changed since then.  We still do everything together.  He is still my busom buddy.  And he is fun to have around and has such a wonderful smile.  He still lifts me everyday and is such a joy in my life.  I am so grateful for that.

And I can’t forget how grateful I am for my husband and for my 4 other boys.  I don’t know what I would do without each one of them.  So are so different and so individual, yet they each bring something to my life that I so desperately need.  And they are so loving and helpful.  I take joy in each and everyone of them and I hope they know that.

I’m also so thankful for all of our extended family and friends who have done so much for us in our lives and especially in the past few years.  I have had the chance to reflect lately on several individuals who made such a difference for us during Samuel’s ordeal.  I thought of mentioning them in this post, but then realized how very, very many of you there are and I was certain I could not list you all without forgetting someone.  (If you know me, you know my brain is a little fried :)!)  But I hope you all know who you are.  From those of you who called to comfort us to those who posted on the site to those who donated money to those who held fundraisers to those who cared for my children while I was away to those who offered up simple, but powerful prayers to those who visited to those cooked meals to those who sat by Samuel’s bedside either in the hospital or in our home and so many, many others who offered heartfelt service - no matter how big or small - I literally can NEVER thank you enough.  So in tiny words on a little inconspicuous blog barely visable in this immense universe they call the internet, I leave you these simple words:  “Thank you.  And may God bless you 100 fold for all you have done for us.  I wish there was someway I could repay you all myself.”

Love,
The Jewkes

Back Home Again!!!

November 10, 2007 | Updates

Thanks everyone for the comments on the site and ideas for dealing with the new tube.  They are MUCH appreciated!  So sorry we missed a chance to see little Parker and his mom (who commented on our last post), but more sorry that he will be having the same surgery sometime next week.  Hope all goes well for the cute little man!

We are back home!  We got home about 5 pm.  Samuel actually slept really well last night.  After my last post, he struggled quite a bit.  He was fine if I was holding him, but I could not lay him down.  So, I held him for most of the evening.  Around 9:30 pm, he fell asleep on his own and slept until we woke him at 6 am.  I did get up with him 4 or 5 times when nurses would come in for meds or vitals and wake him up, but he would quickly fall back to sleep, so I got some good rest!  The only down side was that he slept too well and was never awake enough to urinate.  I had actually warned the doctor (Dr. Jackson - since Parker’s mom was wondering) right after surgery that that would be a good possibility with Samuel because when he is sleepy or groggy, he just doesn’t go.  Well, I was right and by early morning, his bladder was registering over 400 cc’s.  We tried cathing him, but could not get it to work because he holds the muscles in there so tightly clamped - especially when he is screaming because we are trying to cath him.

After no luck and a lot of torturing, we gave up and decided to try a suppository.  Most often when he has a bowel movement, he will also urinate.  We waited an hour and nothing.  So, we got ahold of the doctor and a nurse that apparently is the “wonder nurse” when it comes to cathing kids who are hard to cath.  So, I held his head, one nurse held his arms, one nurse held his legs, the doctor stood by the bed and Mr. Awesome Cather got it done within a few minutes.  It was a good thing, too, because I could tell Samuel’s full bladder was beginning to hurt and that added to the residual pain from the surgery couldn’t be fun.

After all that, Samuel was really tired again and fell back to sleep.  He slept for several hours while we slowly began to feed him through the new tube and give meds through it to ensure that it was working well and there was not vomiting or other problems because of it.  All the feeds went well, so at about 2 pm, we packed up and headed out.  Samuel was still not very happy until I put him in his wheelchair and then he seemed to know we were finally going home.  He was happy all the way out to the car and even sat in the breeze while I loaded the car without fussing.  (He usually hated the wind.)  He slept all the way home.

As soon as I pulled him out of the car at home, he started smiling.  He smiled at Dad.  He smiled at his brothers.  He smiled as I put him in bed and I caught him later smiling at the movie that was playing.  He was happy and content all night.  I think he was just thrilled to be home.  His pain seems minimal and he is just on tylenol and motrin.  He’s had a lot of sleep today, so I’m hoping he’ll still sleep tonight.  We’ll see.

Well, that’s about it.  He seems to be doing well and now we just have to change the dressing each day and keep it clean so there is no infection.  We’ll switch it out for a “button” that is much smaller and easier to manage in about 8 weeks.  For now, I’m just loosly wrapping the old abdominal binders that we got when he had his baclofen pump surgery around his abdomen to keep him from grabbing the tube.  It seems to be working fine.

Thanks for all the prayers.  We’re SO glad to be back home.  I had to take a picture of little Nathan after 36 hours with his dad and brothers.  Let’s see - red & blue shirt (unbottoned), green and brown army pants (rolled up to different lengths on each leg), bright blue socks (that are too big because they aren’t his) and straggly, snarly hair a bit sticky about everywhere from milk, I think (you can’t see it in the pictures, but believe me, it’s a mess in the back).  I guess it’s a glimpse of what the world would be like without women :)!

Love,

The Jewkes

Rapid Treatment Unit (RTU)…

November 9, 2007 | Updates

They finally came and got me just a few minutes after I finished my last post to say that Samuel was out of surgery.  When I got to post-op, they said he had been there 20 minutes or so.  They started telling me that they would take him down to RTU soon and going through a bunch of other stuff when I said, “Uh, the doctor never came and talked to me.  Is Samuel doing OK?  How did the surgery go?”  Woops, I guess the doctor usually talks to the parents right after surgery and then calls them back to be with their child a while after that.  Guess they skipped me.  No harm done, though, just 5 more years off my life in those last 20 minutes in the waiting room!

So, Samuel did well.  He is awake now and we are in the RTU.  I know the surgery site hurts.  There are not smiles from Samuel and he is grimacing a lot.  If he moves at all, he starts to cry and then goes into his habitual arching of his back which increases the pain, which increases the crying which increases the arching which…  Well, you get the point.  It’s not a pretty site.  And then there are startle seizures when people walk down the hall by our door or nurses come in the room too quickly.  I left the room for 2 minutes to try and find him a movie (since they don’t have DVD players here) and he let out a scream like I hadn’t heard from him in a long, long time.  The poor nurse was pale by the time I got back.  Samuel was arched back in a complete “C” and screaming as she tried to somehow get him straight again to help with the pain.  I guess the blood pressure cuff had started up and caused him to seize because he was already crying and it was too much for him.  That caused the scream and the arching.  He cried so hard he started gagging like he would throw up.  I don’t know if I’ve even seen him cry like that.  It took me 10 minutes to calm him down.  Crap!  I hate to see him in pain!

On the good news side, I can tell he understands a lot.  He looked so confused when he woke up and then he looked a little scared and then upset like he knew he was somewhere different, didn’t understand and wanted to go home.  And me being right next to him helps to calm him.  It’s nice to know that he really does know me.  I wish it wasn’t so painful, though.  But, they will keep him on pain meds to try and help with it.

You can just see him wondering if next time we go out of town we can take a trip to Disneyland or ANYWHERE else but the PCMC!

The surgery site is completely covered in dressings, so I can’t see it.  The tube is HUGE, but it will only be that was for 6-8 weeks and then they will replace it with a small “button”.  If they only knew how hard it is going to be for us to have that big tube for 8 weeks.  Samuel does not hold still and he is not going to like having that there.  It’s going to be a huge task to keep him from pulling it out.  It’s going to be a long 8 weeks.

Thank you all so much for your prayers.  There were no problems with the surgery or the anesthesia.  He came out of it fine with great stats.  He didn’t even need extra oxygen.  It’s going to be a long night, though.  I can already tell.  He’s laying peacefully now, though, watching Hercules.  They gave him some pain meds, so he’s looking pretty sleepy.  Let’s hope the pain goes away quick! At least they have lots of movies and the Disney Channel here!

Keep praying for the little guy!

Love,

Teresa

Surgery Waiting Room…

Updates

So, I’ve spent the last hour in the surgery waiting room trying to get wireless internet on my laptop.  I did it - FINALLY!  The only bummer thing is I know I totally messed up my connection for when I’m at home and it took me forever to set that up so that should be fun to fix when I get home.

We got here at 9:30 am and checked in for surgery.  The doctor reviewed with me what he would be doing exactly.  The anesthesiologist was foreign and hard to understand, but very nice.  Samuel was not happy to be here.  I think he knew something was going on.  I think I kissed him a million times and that probably didn’t help his mood.  The surgery sounded simple.  The doctor said it would only take about 15 minutes.  He did mention that if he couldn’t get around “everything” in Samuel’s abdomen without problems, then he might need a surgeon to help him and scopes and…well, I sort of stopped listening then and started praying it would just remain a simple surgery.  It’s been over an hour now, though, and I’m wishing I would have listened closer and wondering why they’ve been gone so long and fearing that instead of one little scar, my baby will come out with 4 or 5 from scopes and maybe no g-tube because it wouldn’t fit after all.  I’m trying to breath here…

Pray it’s going well!  I’ll post as soon as I know any more.

Love,

Teresa

Almost time…

November 7, 2007 | Updates

Just a quick update.  It’s almost surgery day.  We are to be at Primary’s at 10 am on Friday.  I’m excited and scared.  It will be SO NICE to be ride of the nose feeding tube.  But surgery is never fun.  And the real reason for this update…Ben has the stomach flu.  Not really a big deal, but it will be if Samuel gets it right before or after his surgery.  So, please pray that he won’t.  I’ve actually gated off his room so no one can go in except for me and Kaylee when she is here.  Poor kid will be stuck in there until after the surgery, but that’s a better choice than throwing up right after having surgery on your abdomen.  Pray Samuel won’t get sick and that the surgery will go well and that we’ll be happier with the stomach tube than we are with the nose one.  It’s just always rough not knowing if your making the right decision.  (Deciding to give your child yet ANOTHER scar is not a fun thing either.)

 Thanks everyone!  I’ll update on the surgery soon and I’ll post some cute Halloween pictures in a few days.

 Love,

The Jewkes