|Heading into Admitting on Friday|
You certainly don't need all of the blessed details of what happened in the hours after that but thankfully Justine was able to go into ACH and be with B until Michael could get there. I was down for the count and I was so sick that I couldn't even begin to be mad or feel sorry for myself.
This was a weekend built on trust, on hopes and on letting go of my (iron-clad) control over B and the medical decisions around him. I had to let it all go, I didn't have a choice and it was horrible. Certainly a weekend for 'growth' for all of us but still horrible nonetheless.
***(Please don't think for a moment that my husband is not involved with B and the decisions that need to be made. He is very much involved but while he sacrifices time away from us to bring in our much needed income I am B's champion 24/7)***
The decision was made on Saturday afternoon that yes, B would in fact need surgery and it would be happening that day. The final verdict was that B's feeding tube had come out of his stomach (internally) and was sitting in between his stomach lining and the wall of his abdomen. It was causing so much pressure that the skin swelled (what we initially thought was infection) and finally broke through (hence the 'hole'). The 'good' news (?) was that it was thought that the cup (what goes in his stomach) was still inside the g-tube tract. The best I can describe this, without drawing a picture, would be to have your earring stud in your ear get pulled backwards so that the 'stud' part gets trapped in the hole (or the tract). How is something so incredibly painful good news? It meant that the feed he'd had the day before hadn't gone into his intestinal cavity, that most of it in fact had been contained in his stomach (and then bled out through the 'hole'). He did in fact have some feed leaking into the surrounding tissues but it was not nearly as bad as it could have been. It was partially the cause of all of the irritation and breakthrough.
All I knew from my sick bed was that my sweet baby was about to go into surgery and it didn't matter how much I tried to muster the strength to go and be with him, I couldn't do it. I couldn't get out of bed. I was literally unable to go to him, to be with him and to comfort him. As I mentioned, horrible. I also had to put trust into a Surgeon that I'd never met, one that I couldn't look into his eyes before he wheeled my baby away. I had to put trust into the Anesthesiologist that they would review his file in fine detail and know just how complex he is. I had to trust in the Post Op Nurses that they would know he would need oxygen help coming out of his anesthetic and I had to trust in B to fight, to make it through without me at his side (yes, the tears are falling as I typed that).
I finally also realized that I was now too sick to even feed my poor big boys at home (they had been fending for themselves all day and watching tv the poor kids). I called my neighbour/friend and asked her for help. (I just want to point out, this is not something that comes easily to me, ever.) Angie thankfully came over with her son, fed my children, entertained them, put them to bed and even tidied up my kitchen and took out the garbage. (All this while offering to clean out my throw up bowl...whadda gal!)
Michael sent me texts to keep me up to date and I tried to call everyone (Grandparents and sisters) to keep them informed (not very successfully). They didn't take B into surgery until 8pm Saturday night and they expected it to last an hour. I was a wreck for that hour, thinking they took him as the last case of the day because they didn't know what they would find. Thankfully my Husband gave me the thumbs up as soon as he knew and told me that it had in fact been a straightforward surgery and all was well.
The good news (?) was that they didn't call Michael into Post Op so it meant that B was coping well (in Aug I was called into Post Op to find a blue Mr.B). Michael said he was in decent spirits when they brought him back into his room (he had been inconsolable for over 8 hours last surgery in August). I know just how stressed out it made Mike though as he sat up all night with our friend Jodi (who went at 1am after work to watch over him (them) knowing how worried I'd be).
I think Michael came home sometime around 7am and then had to run out to grab milk (I haven't grocery shopped in almost two weeks with everything that's been going on with B). He crawled (literally) into bed sometime after 8am after making sure the big boys ate breakfast.
I was really hoping so much that I'd gotten lucky (!) and gotten the 24 hour flu that has been going around. Not a chance. No 24 hr lottery win for this Momma. Sunday found me not quite as sick as Saturday but not much better either.
Michael got only a few hours of sleep before heading back up to the hospital to see B. It was so hard to admit that again, I couldn't go. I was able to slowly crawl out towards the light at the top of my pit through the day but I've still not made it to the top. Yes, I know, I'm worn down. Yes, I know, I'm sleep deprived. Yes, I know, I have a life of extreme stress at times. BUT I really wanted to believe that if I thought hard enough and believed hard enough that I could feel better and be strong enough to be able to go to B.
Needless to say, Justine and Chad stopped by to take the big boys out sledding (which made their weekend) and I did not get out of bed. Thankfully Mike told me that B slept most of the day/night Sunday anyhow due to the anesthetic wearing off. I did drag myself out of bed long enough to make freezer pizza for my children (which they were thrilled about!) and get them into bed (and apologized profusely for not being Superwoman and thanked them profusely for being amazingly wonderful to their sick Momma). It was a hard weekend for the boys, I won't lie. They were bored, they were worried knowing B was in hospital and they were out of sorts since Mom and Dad had done a role reversal. They trouped through it though, and we all survived.
Michael came home sometime around midnight last night and fell into bed only to have to wake to his alarm at 5 to get up for work (<--I love this man).
|Helping Justine tape himself back into his IV cast|
I had enough energy this morning (just) to get up and get the big boys off to school (although not on time, damn the lack of superpowers). I came back home with the intention of sleeping this morning (knowing Justine was with B) and then going in at noon. Unfortunately like any other Monday the phone rang off the hook so no sleep was to be had but I did rest. One of the phone calls however was from Dr.Brindle (B's regular Surgeon) calling to give me a report and answer my questions the best she could as she didn't do the surgery. I did certainly feel better after that phone conversation! I asked for help (ugh) on Facebook for a sidewalk/driveway shovel and my friend Jen P drove over and shovelled for me while her son napped in the car. It was a wonderful thing to come out of the house to, thank you again Jen.
|Finally some Momma snuggles (although he ripped|
the mask off my face shortly after this shot).
I did however chat with Dr.Bailey (Pediatrician in charge of the Gold Team B is on right now) and did give the go ahead to start running pedialyte into his g-tube to see how he handled it. It was started after I left and Justine oversaw it. She did however text me and then call me to let me know that it was bubbling back out through his g-tube (around the tract, not through his 'hole'). They had stopped it for then and were waiting for surgery to come by and figure out the next step. The bolster (which sits outside the skin) is still very loose while everything heals so it could just be that the g-tube is loos therefore leaving room to leak. I won't know the answer until Michael comes home from the hospital tonight to see how it all went or what was decided.
The hope is to trial him on Pedialyte over the next 24 hrs and then maybe try to slowly reintroduce food. I'm more nervous for his intestines (Ileus) then for his stomach in all honesty. I am hoping that they will keep to their word (Gold Team) and follow my lead and take it slow for B. I would hate to have to spend any extra time in hospital due to B's guts being pushed too far too fast.
B was for the most part in a good mood this afternoon (aside from being very uncomfortable with too much movement and being very unimpressed with the 4 hr round the clock Tylenol suppositories). I was not happy to find that he didn't have regular pain meds scheduled that they were only 'as needed' when I got there. That changed quickly. He is certainly not back to himself but that's only to be expected. Hopefully once the pain subsides some more and he can start to get real calories again then he'll start to perk up.
All in all it was a HELL of a weekend but we all survived. It was a good weekend for Michael and B because they got to spend a great deal of Daddy and B time together. It was a good weekend for Mike to get to see more of the ins and outs of the hospital life. And yes, it was a horrid weekend for me but a good weekend in regards to some personal growth with letting go and having to put my trust out there.
From Our Home (Unit 4) To Yours...