2 Weeks Post Op

Gray saw the surgeon yesterday, sixteen days post op and he is doing really well.  He has regained all but three of his pre op pounds and grew taller!  His suture cites are healing well and the bars have stayed in place.  He doesn't need to go back to Norfolk for six months!  Thank goodness because the trip was long and bumpy yesterday.  We are both still in our pj's today recovering from our long day.  Norfolk is in serious need of road repair!  The number of bumps, pot holes and ditches is unbelievable.

So now Gray enters the physical therapy stage of recovery.  He begins pool therapy on Monday along with  specific exercises from the doctor and has to the lengthen time and distance he walks daily.  Next week he also has to begin weaning from the Loratab (narcotic).

His spirits are good.  He eats continually, which he is supposed to be doing, but now he is actually hungry all the time.  I have told a few of you, I have spent more time in the kitchen the past week than I have my whole life!

I am really impressed with his tenacity and strength.  He never complains, will only quietly tell us "it hurts" when the pain is at it's worst.  He pushes himself to walk to the next telephone pole or breath more repetitions into the spirometer without being reminded.

Gray had visitors last Friday and although he was exhausted it was great.  He looks forward to seeing his buddies again this weekend.  Give us a call if you find some time to come visit.

Thanks for checking in!

Gail

February 9

Gray is doing great!

He is ready for visitors and to Skype.

He can slowly move about, take his walks down and around the driveway diligently and is hungry again.  Between the lazy boy chair in the library and the adjustable bed in his bedroom he is comfortable, and getting good sleep as well.  My challenge now is to slow him down when he is up and moving!  He tires easily, which is to be expected and gets sore quickly, especially after visits and walks, but this is all good.  He hasn't' been able to do a lick of homework since he did his science fair experiments the weekend before his surgery, but that will be one of next weeks goal.

Next week we return to Norfolk for a check up with Dr. Kelly, the surgeon.  Once cleared, Gray will begin to work with a physical therapist to rebuild his stamina and strength.

Home Again!

It feels so good to be home!

Gray is happy to be here and we are fortunate to have Chris' parents here to help us out for a few days.  Gray is comfortable in a lazy boy chair my parents brought over and he can get in and out of it on his own which he appreciates.

Our first evening home, without the nurses was not as successful as I thought it would be.  Gray's meds are administered every three hours which is exhausting!  Gray is trying to fire me as night nurse, rightfully so.  The fail safe system I had designed failed me, maybe because I designed it at 2:45 am.  So I gave Gray a second muscle relaxant instead of the motrin he was supposed to get!  I called the CDC and instead of locking me up they said he would be fine, maybe drowsy and dizzy, but fine.  Well, he was drowsy, he slept until 10:15 am.  and he was dizzy all day!  I felt awful.  So when he tells you his mother overdosed him....he is correct, I did.

Needless to say I have a new plan to try this evening.

My sister and her family will be visiting tomorrow evening and we are looking forward to that.  It will tell us a lot about how ready Gray is for visitors.

Coming Home

Dr. Kelly just left and we are coming home!!  Have to give these amazing nurses some time to get medicine and paperwork together, but then we are OUTTA HERE!!

Day 5

All good, thank goodness yesterday is over.  I had technical difficulties last night and apparently my post did not post.  

Yesterday we learned that Gray is highly sensitive to narcotics so he is now only on Motrin with a mild medication as back up on an as need basis.  It was a rough day, but things are much better once again.  He is able to use the incentive spirometer and take the walks he needs to so he is back on track again.  He is stronger today, not wobbly and is able to sit in a chair comfortably, phew!  Our goal today is to manage his pain with the Motrin, but figure out how and when to use the supplemental medication and monitor its affect on him.  

He has been saying for days that the medicine took the pain away, but made him feel weird and was causing his GI jam.  Yesterday he said he'd rather feel the chest pain than feel as badly as the meds made him feel.  When the doctor came in Gray asked to be taken off of everything but 2 advil.  After chuckling and explaining that the surgery Gray had is one of the more painful pediatric surgeries they do; the doctor agreed to try our new regiment.  That began last night around 6pm and once the percaset was out of his system he began to feel better.  

Thanks to all the texts, calls and emails of help and dietary suggestions.  It was tremendous help.  Did you know most "p" fruits, not just prunes aid in digestive issues?  

I can see the light at the end of the tunnel....home soon!

Day 4

Well...that was not a fun 24 hours.  The staff said it would be bumpy, I think they need a new adjective, I suggest extremely turbulent or hellacious.  Coming off of the iv narcotic was harsh, but then the stress and pain of that combined with his slow GI tract created quite the internal traffic jam.  I am happy to report that all systems are slowing moving now. Needless to say Gray is feeling miserable right now.  His belly is sore and cramping, his chest is painful from surgery and vomiting and he is exhausted.  The good news is his pain meds are once again back on track, now all we do is master the consistency and stay ahead of the pain.

Gray was really looking forward to seeing some friends of his today and unfortunately today is not a good day for that.  I am hoping that he will be able to Skype with some of you later this afternoon.

Day 3

HOORAY!! Great night sleep, NO nausea and good spirits...we are on our way.  Gray wasn't very happy when x-ray changed the appointment from 6am to 5am, but he rallied with true Gray sarcasm and away he went.  Of course now that he is feeling more comfortable they are going to wean him entirely from the Fentanyl pump today and add 4 more long walks to his homework list.  Gray was clear he did NOT want any more meds until they explained the alternatives to him and he has now decided prunes aren't so bad.  He is really entertaining right now, trying to convince me to ask Mrs. Turner if watching Dora the Explorer will get him credit for Spanish class, and can the fact that he has been a living science experiment work for the science fair for Mr. Kuebler.

Today is going to be interesting.  Thankfully we have great nurses who banter well with Grayson and think this is the most entertaining room on the floor.

Ciao for now,
Gail

Day 2 Evening

Well, it was a bumpy day, but it is smoother now.  Gray took several long walks and proved he can handle stairs today.  He's quite a trooper, he had several bouts with nausea while we ironed out his oral medications.  We think we have a good idea about what he tolerates better and when, but I am knocking on wood as I say that.  Between the increase in exercise and battling nausea, he is exhausted and asleep already.  Here's to a good night sleep!

Gail

Day 2

So I learned that you don't count the day of surgery as a day in the hospital.  I don't know who came up with that because I can tell you we were all awake from 4:30 am that day and we were in the hospital the whole time so it was a LONG day and should count.  So, that is why today is only day 2, which really feels like day 32!

Gray had a really good night.  He watched Modern Family and was comfortable enough to laugh!  A special thank you to you all who were texting Gray and doing homework last night as well.  He chuckled and text from 3:00 pm on and it really kept him entertained and in a much better mood.  He mentioned something about a dance this weekend?  I'm sorry to say, but Gray will not be there in person, but I'm sure he will be skype-able (if that is such a word) by then.  

He did spike a slight fever last night, but he was able to bring it back down by doing more breathing exercises.  Just before surgery they gave him a spirometer which he sucks air out of while trying to raise one bar and keep a disc floating in the "happy" zone at the same time.  On the morning of surgery he was able to reach a level of 1200, now he can reach 2200!  Using this is how he does his breathing exercises.  

He has a busy day ahead of him with three visits with the physical therapist and the nurses are planning to begin adjusting his medication away from the pump.  Although it won't be easy, it will be easier than Tuesday!

I'll be in touch later,

Gail

7:00 February 1

Gray's lung function has doubled since the surgery, even though it is painful for him to take deep breaths.  His pain levels rise and fall and the staff continue to remind us this is a typical recovery pattern for this surgery.  He walked all the way to the bathroom and was able to see his chest in the mirror.  He is really happy he has had the repair.  He continues to enjoy receiving texts and this has really helped keep his spirits up and he is beginning to reply.  Chris and I have been busy keeping Gray comfortable so I apologize if we have not been able to return your calls and texts yet.  We really appreciate all the contact and support.

Day 1 morning

Phew, glad the first day is over.  Gray slept as much as the hospital staff let him last night when he was finally comfortable.  He has been up out of bed and in a chair already this morning!  The texts from his friends and family help a great deal.  I don't think he's been able to text back yet, but his phone is in his hand all the time and it's the only thing he is allowed to lift. He ate a great breakfast that Nana brought over from the Inn, and now he is resting and watching Bugs Bunny with his dad.