Skyler needs some prayers...

[Superbob]

Poor little guy! Stay strong, both of you. It WILL get better. Continuing to say my prayers.

 

[dcc617]

Sending good vibes!

 

[Greg a]

Skyler is not happy camper today. His chest hurts, he aches, and they stitched him up instead of gluing him so that it has a chance to drain. He's having a much harder time dealing with this than the surgery, mostly due to the fact he was not prepared for this and we had a long time (12 years?) to prepare him for the surgery.

He's on 3 kinds of industrial strength antibiotics, some of which are the same ones that have caused him to lose his hearing to begin with back when he was 4 months old. He keeps saying that he shouldn't have said anything so he could still be at home and not have had a second surgery. Oh, the mind of a 12yo...

We are waiting for the results of the antibody tests, the ones that will tell us what antibiotics he should be on, but the results haven't come back yet. He's on triple the morphine he was originally on this morning. They say that he MAY be out this weekend.

In better news, he and I managed to figure out how to get him in a reclining chair so that it makes it easier for him to sleep and get up, and most importantly, pee. Getting up from lying down is a HUGE ordeal, so this was a vast improvement.

If something happens different, I'll update.

Thanks for the continued prayers.

I posted this in your other thread http://www.valvereplacement.org/forums/showthread.php?39254-Surgery-and-post-op&p=509446#post509446

Greg

 

[Bill B]

Best wishes for Skyler.

 

[normofthenorth]

Ya, strength to all of you!

 

[Duffey]

Prayers continue . . .

 

[AgilityDog]

Poor baby though a 12 year old would cringe if I said that to him). I can only imagine how he feels.
Hang in there, all of you.

 

[sarahsunshine]

Skyler was evicted from his single room, and put back into a shared room. I guess in the pediatric ward they have a scarcity of single rooms and they had a case come in that required isolation. Now he gets to share with a screaming young kid...


Still no results from the antibody test, and no results for the negative white blood cell count... How long do these usually take? The cultures went in on Sunday and came out positive for Staph aureus. Shouldn't they have some antibody test results yet? I really want to see more specific antibiotics used...

 

[Lily]

I understand, having been a 17 year old when I had my first heart surgery and for a day or two post-op I had an infant for a roommate and couldn't understand at the time why that was necessary -- though now I shudder and think about that poor little thing whose parents never came to see it.

Hoping Skyler recovers quickly and completely

 

[Lily]

Oh, one more thought, can hospitals ever serve the patient yogurt, when they are simultaneously receiving such heavy duty doses of antibiotics? I had recently read that yogurt can boost a person's immune system.

 

[LJM]

Still sending good thoughts to Skyler .

 

[sarahsunshine]

Results of the antibody test came back, and Skyler has had the vancomycin removed from his antibiotics.

Unfortunately, they want him to stay here for a full 2 week course of the gentamicin, which means that his discharge day should be Boxing Day (that's Dec 26 for you Americans). We will try to get him home for Christmas, but we'll just have to see.

In the meantime, Skyler still has his chest tube in (that is the VAC treatment), and says it is so painful that he can't walk, or stand up straight. I hope he doesn't need it too much longer so that he can get to doing more physio with no excuses.

We also found the hospital school and signed him up so that he doesn't miss out too much on school, but more importantly so he has places he has to be on a regular basis and doesn't get too bored. He's still on high morphine. I hope that comes down soon, along with his pain.

 

[Bill B]

Yogurt's good, but I don't think it's that good. The antibiotics should do the trick. If he's off the Vanco then it's not one of the nasty MRSA bugs. He should do well and feel much better after the chest tube is out. Looking forward to news of his steady improvement. :thumbup:

 

[jhusker2]

Prayers coming your way from Cincinnati....

 

[sarahsunshine]

Thanks for the prayers, I think we are out of the physical tough part. Now it's the emotional tough part that Skyler is having, partly due to the fact that he is quite spoiled and demanding. He is refusing any food on the menu, and trying to order the hospital kitchen to make what HE wants. Sorry, buddy. Doesn't work that way.

He has a really difficult time seeing that where he's at is a good thing - I mean, not long ago he wouldn't be here at all, let alone be looking forward to a practically "normal" lifetime. But that is the problem with being a 12 year old in general. Any ideas in how to help that without scaring a kid too badly?

 

[njean]

Poor little guy! Your taste buds really get messed up with all the meds, IV's, etc., that are being pumped into you and absolutely nothing on the menu will be appealing! And it's got to be so much worse for a child.

Tell Skyler to hang in there and hopefully once they ease up on the meds, he'll slowly start acquiring a taste for things. In the meantime, be patient....what else can you do?

Prayers going out to all of you!

 

[Ray Norsworthy]

I'm so sorry Skyler is having to go through this ordeal, but hopefully the worst is over. Best wishes & may the holidays bring cheer for you.

 

[Jkm7]

With his doctors' permission, this might be a time when it might be okay to bring him food he is requesting. He's been through a tough time, needs nourishment to help in his healing and perhaps letting him be a little extra pampered might work for now. It's such a 'fine line'.

Happy to hear it sounds like he is on the mend now and I sincerely hope the worst is behind all of you.

 

[sarahsunshine]

Thanks again, everyone. If you want to get Skyler to eat, you: 1) give him ethiopian food, 2) co-erce him ("If you don't eat that in 5 minutes, then I will take you computer away"). This refers to food he likes, or not. 3) Give him his G-tube back. He thinks that it sounds like a great idea. Food is highly over-rated. He doesn't like food in general and looks like the poster-child for Auschwitz on a good day. Yes, it's partly metabolism too.

Good news:

Talked to the Infectious diseases doctor for a while yesterday afternoon. Lots of good news.

1) Skyler's blood cultures (to see if infection in his blood) have come back negative for over 48 hours.
2) Only one bacteria was found and it is a highly treatable Staph infection
3) Although he is on the terrible antibiotic that caused him to lose his hearing, it's at 1/3 the usual dose, and it's spread throughout the day to keep the dose as minimal as possible at any particular time. The literature doesn't show any loss of hearing at this dosage, but they are going to triple check the literature and possibly remove it early if they find contrary info.
4) Since Skyler started the antibiotics on Sunday morning (Sat evening?) that means that the full 2 week course of the Gentamicin (antibiotic) will be over by Saturday Dec 24. That means that they will discharge him on Christmas eve (morning?). Yippee! Then we get to "self-administer" the only remaining one for 4 weeks at home.
5) After coercing Skyler to get up and walk around today, he was feeling much better in spirits as well as physically (he as an achy behind from sitting all day for ages).

I hope for significant improvement tomorrow. Hopefully the removal of the drainage tube will be a good start.

 

[Guest]

Wow...quite the ordeal. VERY glad for the newest good news.

Thoughts/prayers continuing....



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