Mommy is beyond tired, stressed and anxious right now. Could we please have a few hours of sleep?
|The new style for winter, the foot IV boot|
It's been one hell of a day and as I type this we are (thankfully) at the very cusp of a new day...I need a new day and need to leave this one behind me. Where am I you might ask. Well at Children's Hospital of course, where else would I be blogging from at 12am?
Let's go back a few days...
We couldn't get in to see Dr.Brindle on Tues but we were able to see her on Weds. B's pain was 'tolerable' when he was on a constant flow of Tylenol/Motrin combo. I was saying 'screw it' to everyone's advice and went with my gut. I was bathing him twice a day with good ol soap and water and putting on single gauze on his g-tube/wound area. It was looking better, not great but the best it had been in over a week. Off we trooped to see Dr.B on Weds and we were sure happy to see her! Dr.B felt confident that it was an over growth of granulation tissue (keep in mind she hadn't seen it at it's 'worst'). The thought was that he'd had some pressure on his skin, just enough to break the skin and got some of the 'infection' (I don't think he ever had an infection now) in the skin and it reacted by pushing out a rapid growth of granulation tissue. Sounded reasonable to me. Dr.B said she'd seen things like it before and it would be best to treat it as such. Remember how we 'treat' granulation tissue? Yup, good ol silver nitrate burning.
Ironically I had a Nurse comment to me the other day that the silver nitrate is supposed to be painless...um, no, not painless. Apparently (since I had to ask the g-tube nurse) 90% of people don't find it particularly painful and the other 10% find it excruciating...guess where B falls? Excruciating.
The decision was made to treat it as I well know and have seen with treatment it heals faster and easier. It took three of us to hold him down and get the treatment over with. Braeden bucked and fought horribly through it and I might just have had a tear or two fall. Do you know how awful it is to hold your child down so someone can willing inflict pain on them? Indescribable and I have to do it ALL the time.
He was incredibly sore after the treatment but I had high hopes that it would heal quickly and we could move on to the next Mr.B crisis. Ha.
We had a busy day Thursday and B spent most of it in his stroller without much crawling around. When we finally made it home he crashed out for a three hour nap. When he finally woke up he was miserable, in pain and miserable. I knew it was bad because I put him on the floor and he wouldn't even crawl out of his room (this kid lives to crawl). I got some more Motrin into him and he seemed to settle somewhat but was still pretty unhappy and uncomfortable. We had an incredibly rough night last night as well with him waking several times and just unable to settle into a deep sleep.
This morning was not much different except for one small thing...okay, not small at all, his 'wound' site was awful. It had swelled up and was so painful. The problem with the swelling (well one of the problems) was that the bolster that is supposed to lay flat on his skin was now on an angle which makes it even more uncomfortable (fluid/food leaks around it). Justine and I got him into the tub and got it nice and clean but I knew we'd have to at least go into surgery clinic.
I called the g-tube Nurse and we chatted back and forth a few times. She paged Dr.B and we were waiting to hear back what she wanted to do. In the meantime B was very unsettled all morning, we knew he was hurting. He also started leaking a good deal of his food out onto his sleeper (from which I assumed was around his g-tube site because the bolster wasn't flat). We actually couldn't even run his 12pm feed as it was leaking and hurting too much. I finally got the call that Dr.B wanted him as an in-patient to see this through and to put him back on the IV antibiotics. The call was put in to find him a bed and we got the call at 1pm that they did have a bed on Unit 2 (yay) but that we'd be put on the Red team (Purple is our regular). That was fine, I was just happy to be on Unit 2, our home away from home.
I got all packed up and ready to go when the phone rang again. It was admitting to call to tell me that they'd had an urgent admission and that B no longer had a bed...what?! Here I have a kid with a very swollen (and getting more so by the hour) stomach, unable to eat and 'leaking' fluid...right. She told me she'd call me back in 1/2 hr since they were going to have a "big meeting" in order to sort through the bed needs.
I got the call back an hour later and she told me that we'd now be headed up to Unit 4 AND they could take us at 5pm. I was done, I said that I'd just take him into Emerge and he could sit in a bed there then until they were ready for us because he was in far too much pain to sit at home and wait. She asked me if I could at least wait until 3 and since it was already after 2 I didn't see a problem with that. I hung up and promptly burst into tears of both frustration and stress.
Off we trouped to ACH to admit him and found out that we're not even on Red Team (that know him a little) but on Gold that don't know him at all. More stress.
Our Nurse was super busy when we got here so we didn't even get assessed until an hour later. I explained what was going on and explained the pain and the leaking. I pulled back his gauze to show her and just about threw up. B's 'wound' spurt air and fluid up in the air...his stomach, NOT his g-tube. B has a hole right through his stomach. No wonder it hurts and no wonder it was leaky so much. I felt so very ill and so very horrible that it was leaking out of the hole the whole time...awful and so so so not right.
Then we waited, and waited, and waited. No food, no pain medication and no answers. We finally got to see a Resident and he told me surgery had been paged to come as well. He examined him and had thankfully seen him the week prior when we were in for this last time so knew him a bit. B was getting more and more agitated and I could barely put him down for more then a minute.
The Resident came back in with the Surgical Resident and they examined B. More pain, more stress. The 'thought' is that it is a fistula. What's a fistula? A hole...big description right? What caused it? Don't know. Surgery didn't feel an urgent need to do anything then and there (since it was after 7pm on a Friday night) and the decision will be made in the morning to what the next step will be.
In the meantime B was ordered an IV and some better pain management and then we waited, and waited and waited. While we waited he got more and more agitated. I couldn't hold him (he was flailing) and I couldn't put him down (he was screaming). An hour later I finally hit the Nurse's call bell with tears streaming down my face begging for at least a Tylenol suppository. I asked for the Resident to come in and explained to him through my tears that this was not my kid and that something needed to be done now.
The Transport team came up to do his IV (I requested them since they do complex kids more often) and one poke, two pokes, three pokes a charm and NO IV. I asked for the NICU a few more times and got told they would find someone.
Mike and the boys showed up and I had to send them right back out the door since the ER team showed up to poke B again right after. I felt so badly for them since they just wanted to see us and spend a moment with us but there was no way in hell I'd let them see what B has to go through to get an IV. ER sent up two senior Nurses and they went to work. One poke, two pokes and success...but barely. B has an IV at least but it is very precarious and it has had to be fiddled with several times already since it keeps occluding (getting blocked off).
We also had xray show up at the same time and an xray was done of his abdomen. Two for one torture night!
The Pediatrician came in and introduced himself and I reminded him that we'd met before but the last time he'd had B we were sent down to ICU shortly after they'd met and spent 10 days downstairs on a ventilator. He did remember B then. Anyhow he explained that there was a very concerning area of gas on B's xray and that they needed Radiology to view the xrays immediately. They couldn't tell if the gas was in the intestines or in the abdomen (very bad). If it was in the abdomen then it would mean immediate surgery...no stress. They did come back a short while later and say that the Radiologist was sure it was in the intestinal walls BUT that it was still an issue with the size of the pocket of gas. What it appears to be is yet another Ileus (where part of the intestine stops working). The good thing is that to treat an Ileus and get the gut working again you go off food (already done).
So this is where we are at, a hold through his stomach wall to the outside and an Ileus. Not too much to worry about (why is there no 'sarcastic' font??).
We will see surgery in the morning and more decisions will be made from there about how/when they will 'fix' the fistula.
The 'good' news is that Unit 4 and Gold don't want B anymore and as soon as they can shoot him down to Unit 2 and back to his Purple Team we'll go! Ha!
It's been an incredibly long and stressful day and like I said an hour ago, I'm happy to see the end of it.
From Our Home (Unit 4) To Yours...