Just got home tonight, Jason's there still with Reu. Reu has a stomach bug, gastroenteritis. Is his usual, happy-go-lucky self, signing away to everyone but has been throwing up with terrible diarrhea for a week now. Both of us have been in the same clothes day and night since Wednesday so thought it was time I got home and got clean especially as poor Reu transformed my white skirt today into a luminous yellow diarrhea mess and I drove home tonight in paper trousers.
A former cardiologist of Reu's popped in to visit after seeing his name on the board and remarked how beautiful and grown he is, how wonderful his golden hair is (yes I know I can't stop running my hands through it), so very sick was Reu when Dr O'D last saw him, the same Dr who, in our parent conference exactly a year ago before the heart surgery and with a view to giving an honest prognosis for the future, then said that the next year would be "frustrating" but that he could see him happily playing in a year's time. That gave us a lot of hope back then. And frustrating? that's one sure way to describe the last year.
The wards/floor are a bit of a hellish experience by all accounts. Since Reu is colonised althought currently tests negative for MRSA/pseudomonas, we were in isolation which meant a private room, but at 1am last night they decide to move us into a room with a little girl who like Reu tests negative but is still on contact precautions. 1am!! they move us with the expectation that Jason who's barely slept will drive home since only 1 parent can stay in a joint room at one time. We are not amused and ask to be discharged first thing in the morning because of this shambles.
Of course we're torn by the fact that we can certainly look after him a lot better ourselves at home, and take turns getting some rest, but can't of course bring him home on an IV to treat his dehydration. Today he was put on a 3hr Pedialite feed only for us to discover the bed was being fed, not Reu as he wasn't connected to the pump. Jason and I have done every suction, every diaper change, responded to every alarm, dealt with every throw up. It's not safe for Reuben to be in a room by himself when he's throwing up constantly and there's a risk of aspiration pneumonia when the vomit gets into the trach. He's used to having someone with him at all times and as fantastic as the ICUs are at Children's the floors are just too stretched with a low nursing ratio to patients and you're lucky if you see someone to help within 20 minutes of the alarm sounding. We're ironically put into the same room where I arrived to find him desatting from a mucus plug, alarms going off, no attendance, remember that? last October and my m/c happened the day after.
I've left my boys next to this poor little girl whose parents aren't there at night to listen to her moaning "help, help, I wanna stand up" on an endless reel. I don't think I'll get that sound out of my head for a long time.
Having voiced our concerns, and with Jason able to stay last night after all once we tell them he's not up to a 45min drive at 1am, we've been assured things will be better tonight, no 1am room moves, no letting alarms go unheard, and Jason can at least have the make shift bed I've been sleeping on for the last 2 nights. My scapula pain and sciatica have been crippling for the last few days. Just before I arrived at the ER on Wednesday to relieve Jason and Kristina, the chiropractor put me through the best pain I've ever felt and I'll be going 3 times a week now til I've delivered, but the effects wear off pretty quickly when you're sleeping on a hospital chair. The pain shifts between the scapular, sciatic nerve and then the pressure on my liver so it's a matter of trying to fall asleep with a hot pack on one side before another of the symptoms kicks in again. The way I feel is so debilitating at times and puts enormous pressure on Jason looking after us both. And contractions have started kicking in too. Little baby inside, do you ever get some rest?
I think we're still going to insist on discharge tomorrow unless his electrolytes come up really low. So awful to watch him throw up endlessly, something we've dealt with since October but on an extreme scale this week, 5 times a morning maybe. They've just run an EKG/ECG on his heart which concerned me as his heart is strong, but maybe just to rule out any problems there. That's all ok Jason's just confirmed.
Thanks for your texts and messages. So very kind too of nurse Kristina to visit with her mum with cookies and drinks.
It's 11pm now and I must get some sleep before tomorrow.
PS before I arrived at the ER on Wednesday, Reu had been signing 'love mama" all day. How that melted my heart. How enchanted am I by my kind, sweet, loving boy. I just wish, day after day, that I could be more like him.
4 comments:
so glad to see the news even if its bad how ironic that hes in that same room he that he desatted and mucussed in thats so jsut wierd xoxoxoxox ive had many scary hosp admissions would take me for ever to tell u some LOL jsut think of this the worst one recently drs piereced my throat in an endoscope and the recovery nurses wanted me on the normal ward my normal ped was away and the other one came in the one she nos em wel was replacing her she said i dont think shes ok for that ward but k then my nurse came one of them a lady that has looked after me for many years and said you are sending her to icu if thats the last thing you do i catn stand there one on one the hole time none of us can many other things to luckily only prob ive had in the adults hospis jsut that they r all short staff ah yes those drips going far tolong mum fixed them xxx
Reuben,
We're thinking of you and hope you kick that yucky gastroenteritis and get to go home soon (I've had it before--not fun!).
Hugs,
Sarah, Jeremy, and Evan
Thanks for updating amidst such an awful time. It's so difficult in the hospital... we completely understand that. It's so hard when, with the exception of the IV, you are doing ALL of the care that you always do at home... and yet you would never have it any other way, right? Can you even imagine leaving him there alone like his poor roommate? I remember once a roommate of Gracie's (before the trach, when she was readmitted at 7 weeks) that cried all day and night and was completely alone all but maybe an hour of the day. She was about 8 months old and I sobbed over her. I wanted to pick her up and hold her but was told I couldn't, of course. (I did one night - I just couldn't take it... no one knew and she was soothed.) We don't know the circumstances of other families... but we can't imagine not doing everything within our power to be with her.
And the middle of the night room changes... unacceptable, in my opinion, and yet it doesn't matter to them. We haven't had that happen in a long time, but I remember the Mama Bear fury that exploded from me.
I chuckled a bit at the incident with the white skirt and the paper trousers... been there, too! It's not really funny because it's all related to our sick children, but I have to find the humor in these situations...
Anyway... as usual, I digress.
Big hugs and kisses to all three of you... the troopers that you are. Sending wishes of health and healing to Reuben's tummy and your "pregnant body."
Sending Jason "super-human caregiver" wishes so that he may continue to lovingly tend to the two of you! :-)
Kristi
(Did your skirt survive or did you just trash it?!)
Poor Rue and all of you...have to say it sounds like a manic NHS ward with a space to sleep in a chair as big as a broom cupboard.
Hope Rue is on the mend soon and your sciatica is controlled as best it can be.
Can't be easy Catherine hang in there xx
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