Skyler is in surgery now...for the next 5 hours or so.
Thanks for keeping us updated. We'll be thinking about them.
Thanks for posting, Gardenbug. I'm hooked up to hospital WiFi so will send updates when I can.
Skyler was at his mother's house last night, so we met them at the hospital a few minutes after 6am. We were told that surgery time was changed from 8am to 7am, but it ended up being about 7:40am when he was put under. I gave him the box that Larry (mentu) sent that had a couple letters and a wonderful "cough buddy" bear in it. Skyler was very happy to get it. He was so excited to have something to distract himself with, gave it lots of practice hugs, and proceeded to wrestle with very roughly on the bed. The poor "cough buddy" got a hole in it and I spent the next couple hours trying to find a needle and thread to fix him up. He's fixed (don't know about the quality of the mending job), but hope he will last. I don't know that Skyler will be up to rough-housing with him for a while!
Besides the few last-minute panics (when the cot was wheeled in and asked to get on, when they asked him to take the first oral medication to make him relax and go to sleep) he did great. I must say that I am very surprised by how well he has been coping. Lastly, he voiced that he much preferred being at dad's house (because the weather is warmer and it doesn't bother his breathing)!
It also seems that he much prefers the way his dad and I gave him the heparin than the doctor friend that his mom had do it. He said that it hurt a LOT more where the doctor did it, and that the pain lasted a lot longer and it bruised...
We just spoke to the surgeon (Dr. Ivan Rebeyka). Surgery is not yet finished. Skyler is being "warmed up" on the heart/lung machine.
Dr. Rebeyka put in a 25mm On-X valve in the Mitral Valve location. He replaced the Aortic Valve with a 23mm On-X valve as well. He said he could have repaired the aortic valve, but that he felt that it would only hold between 1-10 years. Going for the option of "no future re-surgery", he put in an On-X.
Lastly, and surprisingly, he found that Skyler's ascending Aorta was very thin and 5cm in diameter. He took it out and replaced it with a dacron graft.
He is happy with the way things went. We wil have to watch out for the size of the Aorta in the future, though.
Hope he has a speedy recovery! Please keep us updated, we'll be praying for him.
I'm so glad that is behind you all. It seems you have amazing drs. Thank you for the update. I have been thinking about you. I tried to wish you well last night, but my computer wasn't cooperating.
With a bunch of things going on, I haven't had a chance to update.
Skyler made it to the PICU at around 3:30pm, making the whole surgery around 7 hours approximately. They are going to keep him sedated and unconscious for about 24h - until tomorrow afternoon.
Throughout this afternoon and evening they have been dealing with various issues relating to bleeding and maintaining his blood pressure between 85 and 100 systolic. From 4:30-5:30 they decided to try to wean him from some of the drugs. It seems however that they either switched, or put him back on because he was waking up and moving around quite a bit. By 5:30 he seemed to have settled down a bit.
Mom has been doing some "healing energy" work with him until 7-8pm and then went home to get some rest. Dad and I came home for some dinner and to help put the little ones to bed (some family friends took care of them for us today), and then dad went back to the hospital until about 1am. Tomorrow morning Mom is planning to be at the hospital at around 7am, and Dad will get in later in the morning. I will deal with the little ones and get in to be there for noonish. At least that's the plan.
As the surgeon said, the 12-24hr period is the critical time.
Thank you for the update. I will continue to keep you all in my thoughts and prayers.
Thanks for updating us. I can't imagine going through all that on so little notice. I hope and pray tonight and tomorrow go well for him.
Skyler is doing quite well now. His color has improved. He's breathing on his own and talking, mostly coherently. He has a fine male nurse, named Archie. Perhaps tomorrow he'll have tubes removed and move out of intensive care and into another area. That's when his brother and sister can see him!
He'll remember this for sure...but it won't all be bad. He's had this hanging over his head all his life. I believe he will feel so much better physically than ever - and I'm excited about that!
I'm glad he's doing better! Wonderful news!!
Thanks again for the well wished! They are working!
Skyler continue to steadily improve. He went through the "critical period" with flying colours and no issues other than his blood pressure is on the slightly elevated side. He has used up his allotted amount of a certain medication to decrease his blood pressure, so they were just going to wait it out.
At 12:30ish they extubated him, and he has dealt with that swimmingly. He has been swimming out of his morphine induced stupor more and more frequently throughout the afternoon. At times he is perfetly aware of everything going on, telling us exactly where he is and what has been going on (I'm in the PICU. I'm starving Can I have more water?), and other times asking where he is and whether he's had his surgery yet. He has started coughing a little and has tried using his bear but he can't give it a firm enough hug yet. By the time we left to pick up the little ones he had been eating ice chips for several hours. When I told him that we were leaving he told me he loved me and wanted to give me a huge hug and kiss which was rather awkward with all the wires and tubes (not to mention the fact that his mom has been insisting that he's terrified of his dad and I for the past month and she was standing right there). I got a bunch of good photos for the memory book that I told him I would make for him, and he insisted on SMILING, and giving a thumbs up (with his glowing red thumb) for a lot of them!!! What a ham.
Right now they expect that he will be out of the PICU tomorrow afternoon or evening, and into the children's cardiac ward where he will have a shared room (it's all they have) instead of being one bed among 5-6 in an open row. He will be allowed unlimited visitors at that point, and considering he's invited his entire school for a visit, that is likely important! He will also have a cot in his new room for an overnight visitor which will make things easier for everyone.
The only difficult thing that we have had to deal with was that they have had to close down the PICU several times today to do various "procedures". When that happens they make everyone leave. Unfortunately that means that nobody could be with Skyler for a couple hours when he was first extubated and waking up. He didn't like that one bit.
There was another set of parent whose 5month old twin son had just come out of OHS (the other twin was with them and fine) and they had been told that they could see him in 2 minutes when the PICU was closed and they were quite frantic believing that it was their son having difficulties. As it turned out it was not, and their son was doing spectacularly after a Yasui procedure.
Wonderful news to wake up to this morning! Yay Skyler!!
We just got a phone call from the hospital (mom is there right now). They are "in the process of" pulling his drainage tubes, and moving him out of the PICU to the pediatric cardiac ward. We are packing up our stuff to head over right away.
Skyler has also been eating a lot of ice chips and they are slowly getting him back to clear liquids and solids. Chicken soup sounds about right so we are going to bring some. If he eats it, fine. If he doesn't, I will!
How's he doing? Any updates?
I spoke to him on the phone last night! He can only say "HI!" really...throat is so sore and he's so thirsty. Still had a few tubes in him in case a pacemaker is needed, but that seems less & less likely with time. His sternum was re-shaped which may make his recovery a bit slower. He has slept well and has lots of attention from family and nurses. He may get to see his brother & sister soon because he is out of intensive care. Then...his whole school is invited! Good grief.....
Glad he is doing so well Sarah!!! I hope his recovery goes smoothly!
Report from Sarah - Thursday evening.
He's been up a couple times, had his morphine taken out around 10am, eaten a little, drunk a bit, sprinted to find pizza, and slept a whole bunch. The nurses talked about sending him home tomorrow, but his parents are both hoping that he will be in for longer (Sunday).
How's Skyler doing today, any updates?
Thursday Skyler again improved drastically. His breathing is better and he is off oxygen. He was very sick of his bed and figured out how to con Dad into being his therapeutic cushion so he could lie down partly on Dad for his afternoon nap. Not so comfortable for Dad, but a vast improvement for Skyler! Another reason Skyler wanted to sleep on his dad is because there is a window he could look out of more clearly from the guest bed that his dad was trying to nap on.
The hospital is made on a bunch of multi-floor atria, each of which has about a six floor ceiling made of glass. This means that every patient room in the hospital gets natural light. It's very pleasing. Skyler also happens to have the room directly across the atrium from the glass elevators so he can watch visitors come up from four floors down, get off the elevator, and walk around to his room. He's got ample warning. Yesterday he was sufficiently alert that he could keep track of that and enjoyed it.
Odd - I thought that this had been posted on Friday morning.
As a further update, Skyler just left the hospital at noonish today (Sunday). He's been restless and ready to go except for his INR levels. I find it odd that the doctors didn't want to discharge him yesterday even though his INR was at 2.0 . We've managed his INR at home for the past 12 years and many times it has gone below that, why now can we not do it ourselves? But, be as it may, he is now out of the hospital and very glad to go home.
As for the saga of divorced parents, we needed to have both INR monitors calibrated when Skyelr had blood work taken this morning. Biomom calibrated hers and then quickly ran home with all the INR test strips. We got to the hospital 45 minutes later. She told us that it was to hard to test both machines at once. Then she told us she took all the strips home so we couldn't do a test to calibrate our machine... Oy! Then we had to get the nurses all worked up trying to find some test strips around (they didn't have any in the nursing station and couldn't get a hold of the thrombosis clinic since it's Sunday)... Geeze... Why do some people always have to try to make things hard for others?
Yes, he's doing great.... It's still amazing to us that his ascending aorta as at 5cm and no one had a clue... 5cm is big to begin with on an adult. 5cm on a 70lb kid is MASSIVE!
That's great news that he is home and recovering! Is he staying with you guys or with his biomom?
He's supposed to stay with Biomom for 2 weeks, and then with us for 2, I think that's going to change with Christmas, though.
What craziness that the doctors recommend that he miss only 1-2 weeks of school... "Excuse me, I have to have open heart surgery, I'll be back in 2 weeks."
REALLY, only 1 to 2 weeks? WOW, that's not long at all. How is he feeling now that he is home?
He's doing great! Went and visited briefly yesterday afternoon. Amazing - his colour looks better than before surgery.
It's awesome that he's doing so well!
I'm so sorry I haven't posted more encouraging thoughts. I have been honestly too lazy to log in. Sad I know.
I'm so glad he is doing so well. I haven't had to deal with surgery and schooling yet. That's great he gets to go back so soon. And great his coloring looks so good.
I just have to say this. And then I'll bite my tongue. It is totally irresponsible to leave you with no testing strips. He does come to your house. They WILL be needed there. Okay biting tongue now. :rolleyes:
Angela - Ah, it's not worth the fight. Biomom pulled a "I don't have any test strips and I can't afford them" so that the clinic would give her some free. She did this simply because she doesn't want the hassle of having to go through Dad's insurance, then hers, then mine. Dad's insurance covers 80% of the cost of test strips, and mine covers all. So really, she's taking test strips away from someone else who can truly not afford them... just because it's convenient. (They cost about $10 each and she got 24). this is simply another thing that annoys me that I just shake my head at...
The only reason we were going to borrow her free ones and not use our own is because she told us she had some that were just given to her and we should use hers since they were free and for calibrating our machines. she said to leave ours at home because they weren't needed. After taking her advice, she takes off with them and we can't calibrate our machine? Oy....
Yep, working together for the kid's benefit...
OK, now I will bite my tongue!
:bigarmhug: And here is some kleenix in case you bite your tongue too hard.
Skyler's mom just called to say that he was re-admitted to the hospital (no beds available so they don't know where to put him). He was slowing down today and feeling crummy. He had a little bit of discharge coming from his incision (I think). He has extremely high white blood cell count and high "celiac" count (don't know what is meant by that). Dad is going to spend the night at the hospital with him. Of course, the house is upside down because a simple cabinet installation turned into a full blown kitchen repainting and we just took off 2 walls of wallpaper and every counter is full of stuff.
Oh no!! Keeping him in my prayers. This is actually one of the reasons we are trying to time our projects so that we can be done before any given cardio appt since we never know what is going to happen at them. Only about 4 more projects to go inside the house. :rolleyes: KUP
The surgeon took a look this morning and wants to go back in to clean it up. I don't know when. I assume today.
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 (not supposed to take it because it interacts with his blood thinner meds)? We've discussed this with her many times, yet she doesn't listen! ARGH! This makes me so frustrated.
I was coming to see if they had gone in yet. I'm so sorry about the infection and things down hill. I can't blame you for the worry about the hearing loss due to the antibiotics. :bigamhug: Does he wearing hearing aids now? I have a friend with a daughter who is deaf. I think she said at one time it was because of the medicine she was on as a baby because she was a micro preemie (born at 24 weeks).
I don't know how you are keeping it together with biomom. I would have lost it. She could have cost her son his life. This is VERY disturbing for her to have done that. To not call when he developed a fever? To be complaining of the pain? And then give him a medicine he's not suppose to have? (I can't figure out where the smilies are and don't know the code, but if I did I would be putting the red faced steaming mad one here.) :bigarmhug:
Continued prayers for the whole situation.
Thanks for the sentiments. Right now Skyler is in good hands, and he's the one I'll be thinking about, not biomom. Don't get me started.
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. The beautiful reconstruction job that he had looks like a stitch job, not a beautiful narrow line.
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!
Poor guy. I can't even imagine going through major surgery twice in such a short period of time! He will be a stronger person because of all that he has gone through. And thank you for keeping us updated!
So glad you figured out a way to make getting up a little easier for him. You will need to remember this in case I need it in the future. That stinks about the "patch job" they did. Prayers his recovery goes smoother.
Oh and Yay for the kitchen getting somewhere. Can't believe you got some painting in even though what you all are dealing with. You'll need to post pics when it is all done.
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.
Sarah, what an ordeal this has been. I really hope that he is feeling better soon and able to come home for Christmas. When he does come home, will he be with you and DH? I hope so! I know he will be well cared for then! HUGS and I will continue to keep you all in my thoughts and prayers.
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 today. Hopefully the removal of the drainage tube will be a good start.
They are starting the paperwork on removing the drainage tube.... maybe tomorrow?
I'm glad things are moving along and his infection is easily treated. And it will be awesome if he gets to go home Christmas Eve! Thanks for keeping us up to date.
Thank you for the update. I was actually just going to check on how things were going. So glad the infection is very treatable and Christmas Eve looks like the discharge date. Yay for tube removal.
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.
Wow Sarah....what a journey this has all been. I just finsihed reading the whole thread and omgosh Skyler is my lil hero this season!!! I still can not believe that biomom is still as usless as usual. Would it be benificial to bring social work in on her? She needs a swift kick in the you know where when it comes to a lot of her decisions on Skyler...she has put his life literally at risk more than enough. Hugs my friend--when things calm down let's do coffee and catch up :hug:
I think social work is a lost cause... a professional psychologist designated by the courts to help put together a "parenting plan" with BioDad has written to the courts saying that she is unwilling to cooperate. I don't think a social worker will help.
You are down at the UoA hospital aren't you? We could meet for lunch or coffee or something. I'm there daily!
It looks like Skyler is breaking out on Friday, not Saturday!!!! WOOHOO!!!!!
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.
Thanks for the update. Things are sounding great!
Skyler came home today!!!! Boy he is glad to be out of the hospital.
But, I tell you, December is the month to pick if you have to be a kid in the hospital! I can't believe the sheer number of gifts, many of which I hope got donated because there were probably a couple hundred amazing gifts that didn't get adopted... and things that DH and I would love for Christmas like high tech remote control helicopters and stuff.
Now he is on IV antibiotics for a month.
This has been quite the journey!! I'll try to log in more often but I'm glad to see that everything has turned out ok for him, despite some pretty serious hiccups.