Surgery... and post-op

[sarahsunshine]

More puss drained out this morning and they took some to make a culture. They thought that it was only the incision. The surgeon took a look a few minutes later and wants to go back in and clean it up. They called a team and are trying to put everything together to do it this morning

This is scaring me. I really hope it's not in the bone. PLEASE. PLEASE.

 

[sarahsunshine]

Skyler is now in surgery.

 

[Freddie]

((((hugs)))) and prayers coming your way

 

[Jkm7]

Prayers for you all and please let us know how it is going.

 

[sarahsunshine]

Thanks for your prayers everyone. I'm not usually one to ask, but today I was feeling that it was needed.

I guess Skyler's incision started to ooze pretty seriously this morning on its own. Despite being on antibiotics all night he was feeling pretty lowzy. They got the surgical team together and had to open up the incision and his sternum. The infection was all behind the sternum. Now's to hoping that they got it all, that they are giving him the correct antibiotics (they haven't got the results back from the labs and he's on Vancomycin and another antibiotic), and that they didn't get the infection to spread to the bone while cleaning him out... Tomorrow morning (4am) he gets another test to see if his white blood cell count has come down.

High doses of intravenous antibiotics are worrisome as well since he lost much of his hearing due to huge doses of gentamicin as an infant (he's deaf in one ear and has high frequency hearing loss in the other). I realize that gentamicin is for gram-negative antibiotic as opposed to gram-positive antibiotic and Vancomycin usually doesn't have many side-effects, but he likely has to be on it for 6 weeks - intravenously. Ugh. I was on intravenous antibiotics for 3 days once and that was bad enough.


Anyhow, Skyler was back in the Pediatric ICU, but they are hoping to get him back up to the Pediatric ward sometime tonight or tomorrow. They are saving his room (a luxury single room this time) in the Pediatic ward. I hope this helps him sleep.

I will update tomorrow with more news.

And here's what I found out:
1) While they were in there they added a suture to his ascending aorta graft. Not sure why.
2) I read the history since Saturday in Skyler's binder. Skyler had a fever of 39C (102f) for 2 days. The HealthLink (hospital) called to check up on how Skyler was doing on Saturday, and his mom said he was fine but that he had had a fever for 2 days and that his incision hurt. They told her to get him to the ER immediately. In the ER report, it said that she had given Skyler Ibuprofen to reduce his fever... Now, I know I feel powerless in all this so it accentuates everything, but the release stuff says that if he gets a fever post op to call the nurse/doctor immediately. Why didn't she do that? And why is she giving him ibuprofen? We've discussed this with her many times, yet she doesn't listen! ARGH! This makes me so frustrated.

 

[Bina]

I'm sorry to hear about Skyler's infection and the issues with his Mom....she is probably not totally functional
during all of this. The stress is mind-blowing for some. My husband basically sat near my bed in a chair with
a totally blank look on his face for the first few days. After I was up and walking and talking my hubby coped
much better. When I ask him about it now, he admits that he was terrified and overwhelmed.
Hang in there !

 

[sarahsunshine]

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 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.

Oh, And DH and I managed to paint the kitchen last night and this morning (after taking the little ones to the day home and before going to the hospital. Tonight we put up the base boards so a little organising and it will be good - at least functional. It still means we only have half the kitchen painted, but at least it's not upside down! I can deal with this EASY!

 

[Greg a]

Has there been any consideration for Negative Pressure Wound Therapy Achieved by Vacuum-Assisted Closure ? http://www.o-wm.com/article/6655

 

[sarahsunshine]

It has not been mentioned, but I will look into it. Thanks for the link. From the paper it seems to describe simply another way to close a wound. What is the link between negative pressure wound therapy and infection?

Now that I've done a bit more research (http://aisla.hubpages.com/hub/Negative-pressure-wound-therapy-for-wounds-that-are-difficult-to-heal), I think that they are doing this already. He has a drainage tube in, and it's got a "pressure" thing on it. I will have to ask today to see if simply drainage, or VAC. He doesn't seem to have any "sealed" cover other than dressings, though, but I don't know if that would be necessary if the tube is under his sternum. I just assumed that it was the same drainage type tube that he had after his 1st surgery, but the contraption does look a bit different, I noticed yesterday.

 

[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.

 

[Lynlw]

Thats a shame he has to stay in that long, Justin only had to stay until all his drain tubes stopped draining, which was about that long in the end, we just didnt know it would be upfront. I'm glad to hear they know the right antibiotic now and that he could drop one. Sorry to hear he is having such pain. School sounds like a good idea when he is ready

 

[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.


Lyn - I see that Justin's infection came back many times. Is this expected or because it got into the bone?

 

[Lynlw]

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.


Lyn - I see that Justin's infection came back many times. Is this expected or because it got into the bone?

Glad to hear you got good news and he is walking around , that really helps. Hopefull the drain tubes can be pulled soon, Justin's (he had 3 drains but they had to do alot of surgery and move muscles etc) took quite a while to stop draining.

Actually Justin's "only" came back 1 time, (knock on wood) his came back much later than they expect If it is going to come back. Usually its in he first year or so. I think it is pretty rare to have it come back that late, but I know in the beginning, some people need to go to the OR a couple times before they get it all and nothing comes back. They did tell us after Justin's surgery, that they were pretty sure they got it all, but often they have to go back a time or 2. I think having it in the bone probably makes it a little more common to come back or grow in a place they didnt see it the first sugery.

 

[Bina]

I'm pushing the vibes that Skyler is home for Christmas....I hear ya on the food thing, since OHS my weight has
declined which is not something that I needed. Gotta just try to eat or nibble on good things and not waste tummy
space on junk foods.

 

[Sarah_Louise]

Thinking of you both xxxx

 

[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).


Hopes are that Skyler will get a Broviac and have his chest tube removed today. They got the paperwork started yesterday. If it does't happen today, it will be Monday.

 

[Greg a]

YEE HAW sounds great
"Skyler Home for the HOLIDAYS"



YEE HAW

​

 

[sarahsunshine]

Well, the prayers seem to have worked.

Yesterday, I took Skyler's 2.5yo sister to the hospital to visit for the entire afternoon/evening. Skyler has been begging to see her, and it was about time that they could both deal with it energy-wise (and me too). It's really funny the effect that the 2yo has on Skyler. If she tells him to eat something, he will. If she tells him to drink, he will. If she wants to run down the hallway full speed, he will too.... Not so wise.

Skyler got put on a 3rd antibiotic (oral). I don't know the name of it but it turns his pee and tears red. Weird. He got a broviac put in (permanent IV). Then he had his chest tube and all previous IVs pulled. He's now got one hook up, and it's not permanent, and he's much more comfortable. The first thing he did was go for a long walk (OK, about 5 minutes) to the beautiful hospital "Healing Gardens". There he rested and looked out the window for about 20 minutes and decided that he had to head back because one of his teachers was planning to come visit. The teacher was late (and Skyler was stressing about it at 4:01 because he said he would be there at 4pm!), but stayed for a nice long visit. Brought him his favourite kind of Gatorade. The teacher also brought him an envelope - an envelope from a school contest for selling magazines, and Skyler won $50! We stashed this in a pocket of his jacket so he could use it to do some Christmas shopping.

The other good news is that Skyler MAY be able to get some "Pass" time to get out of the hospital during the times when he doesn't have to take meds. We'd start slowly, of course. First, we would just like to take him for a drive to see Christmas Lights. Then maybe to get some specific Christmas gifts for people (Mom, Dad).

The other day Home Depot came and brought a bunch of their little kids kits, and Skyler's Mom absconded with a whole bunch of them. Now Skyler is going to make a couple for his younger siblings for Christmas (Helicopter, boat). Yesterday Santa came to the hospital and gave Skyler a remote control car and helicopter. Now Skyler doesn't need us to get him anything for Christmas!

Lastly, the infectious diseases doctors believe that since the infection left his bloodstream so quickly that it's very likely that that the infection is out of his system. They aren't taking any chances, though.

Thanks again for all the prayers and vibes. I think it has helped a lot.

 

[sarahsunshine]

Thanks again everyone!

Skyler is doing great. He is still periodically having pain in his fingers and toes, but curiously, only when his mom is there. He says it's because Dad lets him take a shower.

Great News: Skyler will be going home on FRIDAY, not Boxing day, not Christmas, not Christmas Eve, but Friday! Why? well, no one works on Saturday to be able to get him set up for discharge, so they are doing it a day early. We already head our training for the home antibiotics, so it's just time to finish the gentamicin and get a home pump.

Lyn, I think they wanted to keep him in until he had only one IV antibiotic to pump. Two would mean two pumps and a lot more joins to keep track of.

Other great news, Skyler has been getting a bunch of passes from the hospital so he was able to come home for dinner last night for a couple hours. Today he gets 5 hours pass (3pm until 8pm) instead of 3h. Tomorrow, he will get even more and is hoping to go to school to watch a movie for his first period class as well. He is excited to see his teachers and friends. I think he will be exhausted afterwards, but that's just fine.

In other news, the physio has cleared him for any exercise as long as it's not contact (he has a Broviac so that does limit things). I wonder if school can set up a cardio work-out schedule instead of his usual gym class. He goes to a sports school so we'll see. It would be great for him since he's never pushed himself in his life, and it will be 6 weeks post heart surgery when he returns to school after Christmas.

 

[sarahsunshine]

And Skyler came home today!!!!! WOOHOO!!!!

Now we have to deal with intravenous home-care antibiotics for 4 weeks, but I'd much rather that than in the hospital!