So glad I found you guys!

[foofer]

I've loved reading the news of Elias and you too, Mom! When I looked at the recent pic of Elias walking down the hallway, I had a thought of the man he will become, and what a good man he will be. I hope somehow we get to see a glimpse some day.

You are doing a terrific job! Brava to you.

[Resilience]

Elisa,

You and your son are an inspiration. I've intermittently read your thread when on this forum, but in dealing with my own issues with my daughter, haven't commented until tonight.

I applaud your strength of character.

You are a great mom!!!

I'm sorry your journey has been so difficult but am so happy that your son is now receiving the care he needs and am so proud of Shriners for being there for him.

Best wishes to you both!

PS: I'm so glad he has that great big window in his room!

[Elisa]

Thanks for the encouragement everyone; appreciate it.

Miserable night last night. The dreaded catheter was put back in for the third time b/c Elias is still not peeing and the bladder scan showed close to 900 ml. We tried everything to avoid the catheter but nothing worked and he had a meltdown. I explained to him that it was very important to keep his bladder from stretching as it would cause a lot more problems down the road. He was given Valium to relax, warm packs and I held his hand and actually assisted the nurse (I’ll have my nursing degree when we leave this place, lol) during the procedure and I felt terrible for him but we got through it and we’re leaving it in for a few more days. He hates it.

Talked to the resident doctor this morning and we are going to try giving Elias something non-narcotic for his pain b/c this is what’s causing his system to be so suppressed. He won’t be using the walker today b/c it’s just too complicated with the catheter. We’ll see how he does today/tonight with no narcotics.

Dr. D’Amato (sp?) another surgeon also stopped by and we talked about the weight traction and Elias’ extremely painful neck and he has given the order to take two pounds off, so we are back down to 24lb for the next few days and to about 20lb at night. He thinks that Dr. K. is moving a bit too quickly with the weights b/c he is wanting to get the best correction before his second surgery on April 19th. but it’s just too uncomfortable. It’s a balancing act to say the least. Dr. K. will be back tomorrow morning and I’ll see what he has to say about this. I never once thought of the neck being such an issue, I was thinking a sore head from the halo and a sore back from the surgery but it is the neck that’s causing him the most grief right now and of course the catheter nightmare.

He’s doing okay today but is very touchy and we are taking everything really s-l-o-w… I mean really s-l-o-w. If I move any slower I’d be stopped. This is taking the patience of Job at the moment but whatever it takes to keep him stable and avoid anymore meltdowns.

Here's a pic from yesterday afternoon: Elias meets Ryan (16) the other halo-boy and they seemed to hit it off pretty well.

[Elisa]

Yes, someone, can't remember who, did tell me that it is more common in boys than girls and that it is caused by the narcotics, especially if it's the first time they've been on them which it is as well as caused by the morphine. His retention yesterday was closer to 850ml but that's still quite a bit. He generally holds his pee for long periods of time so hopefully he hasn't done any damage to it. *hopes*

[titaniumed]

Catheter's and NG tubes

Oh boy! I can attest to catheter’s being a drag. Any lines or hoses can be a test, but NG tubes and catheters are the worst. The NG tube had my Adams apple so raw, I thought my throat was on fire, well, catheters for a guy feel the same, only downstairs....After it was removed, I walked slowly for a long time, and not because of my back.

I am not surprised that Elias is a little testy. I hated mine also, only I wasn’t a little testy, I was very VERY testy. I was barking. There wasn’t much that anyone could have done, to make me feel better at that point.

There are little “overlooked” things like this that are a surprise, that we had no clue on going in, that are so depressing. Its such a relief to know that there will be a time where all the damn hoses will be pulled, the surgery’s will be over, and recovery will start. It will happen soon, may the time pass quickly.
Ed

[Elisa]

We both had a much better night last night and this morning I had the best shower ever: our house is older and when someone runs the tap or flushes the toilet the temperature and pressure changes so this was wonderful.

Elias is sleeping in this morning which is good b/c he was very very tired and sore yesterday. The doctors/interns/nurses have done their morning rounds and he slept right through that plus the construction outside so he really must need his sleep. Speaking of doctors... Dr. D'Amato was in again b/c Dr. K. won't be back until later on today and I just have to say that I am SO glad we have Dr. K. and not him b/c that man totally rubs me the wrong way and I could just see us not getting along and then he'd have to see the 'other' side of me and it is not a pretty sight at all. If there is a god in heaven I am thanking him for assigning Dr. K. to us.

[jrnyc]

through it all what is evident is what a brave son you have raised!
he sounds really good natured too, all things considered with what he is going thru!
i cannot imagine dealing with all that weight!
and it doesnt sounds as if you have too much time on your hands right now, as you were worried about...
i hope things go smoothly, and that Elias does so well that you actually do get some free time!

best of luck for continued success

jess

[Elisa]

Jess, both my both my boys are extremely good natured and as much as I love my daughter, it would have been SO much more difficult going through this with her so I am truly thankful that I was spared that grief. She would have been difficult to deal with with just a regular surgery but the whole halo ordeal... YIKES!!

Things 'seem' to be settling down now and Elias hasn't complained of neck pain yet today and he slept well and is eating okay so I am relieved. He still has the catheter in to give his bladder a rest b/c it was pretty stretched the other day. Dr. K. will be in later on today I'm told so I'll ask him what the plan is for that.

A wonderful male nurse brought Elias the entire set (extended version) of Lord of the Rings yesterday so he can watch them. What a sweetheart!!

[Elisa]

First post posterior release/halo traction x-ray taken tonight. I was a little surprised they just wheeled the portable x-ray machine into our room and took one of Elias in his bed. He wasn't flat on his back, rather inclined somewhat and they took one in that position. It's only been six days since his first surgery/halo application so I'm not expecting a huge difference in degree but am still curious to see if anything has changed at all. He still is at 25lb, 1lb less than he was the day before yesterday but I'm pretty sure the weights will be increased tomorrow now that he's had a bit of a rest. He has not complained about a sore neck today at all so that's good.

Forgot to mention earlier that Dr. K. is thinking his fusion will be from about T3-L1 or maybe it was T2-L1 but somewhere around there.

[Pooka1]

It will be interesting to know how much the curve decreased.

The curve appeared to be confined to the thorax so I guess that's why he is stopping at L1.

Hang in there.

[Ballet Mom]

I'm glad your son seems to be getting more comfortable. Good news!

Dr. D'Amato is the designer/developer of the Providence brace. He's quite distinguished. Sorry you two didn't hit it off too well.

[JenniferG]

Great to read your updates, and to read that Elias' neck pain has eased up. I agree with others, your son is handling this marvellously and staff must be relieved you two are coping as well as you are.

Best of luck with the next catheter removal.

[Elisa]

60 degrees... down from 110 degrees!! O_O

Just ran into Dr. K's surgical assisant in the hallway and that's what he told me. We'll see if Dr. K says the same thing as the morning rounds will start in about fifteen minutes. Sounds WAY too good to be true to me.

[Elisa]

Okay, they're still saying 60* so I guess I'll have to believe them but I am shocked. I was thinking maybe around 90* or 80* max so this is definitely good news. I just told Elias and he's pretty stoked and this news will encourage him to keep focused on why we're here.

Dr. K would like the catheter gone today and has ordered some sort of medication to help him pee. I hope everything works out with this today b/c Elias pretty much had a meltdown/panic attack when it was put in for the third time. I can't imagine how he'll react if it's a fourth.

[Elisa]

60 degrees is amazingly good! No wonder the poor guy has been in such pain - they are really yanking him straight.

Crossing fingers on the catheter coming out. They had to straight catheter my son a few times (they just put it in to collect and then take it back out) and he was trying to disappear into the bed the last time they came for him.

Yes, they've been yanking him pretty good and I was starting to wonder if his poor neck would end up looking like a giraffe's but he's adjusting now and his neck is good and he actually has the strength now to move his head from side to side on his own to get into a different position which means I don't have to lift his halo up as much when he's in his bed. Another pound has been added (snuck on without telling him of course) so he's back up to 26lbs. Catheter is out... again.