Sleeping toes
Lord of the Ring
Ten little pinkies 
Lord of the Ring Part II 
Afternoon nap with Daddy
Dancing fingers
Mama's hand in your eye!
Hand to mouthWhilst I'm sitting up at night, I take photos of Reuben sleeping, hands and feet. You may see the snaps better by clicking on them. Makes me feel like I've achieved something today!
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A triple night nurse let down from Maxim and a gillionth call into Apria to deliver medical supplies, it's not that hard, surely. You take the order, you fulfill, you deliver. Apparently not. You take the order, we repeat the call every 2 days to make the same order. The nurses, well, 2 nights on the trot no nurse and then tonight, our good nurse is booked to go elsewhere so we have a stand in and that means another hour explaining everything here. I've let Yuka and Scottie down again as they were due to visit us this evening. We have a dire need to sleep and everything is beyond in turmoil here. Dear CHARGEr mum and dads, how on Earth do you cope?
PS Jason's just asked. Do you think these cathetars (8 French, mind) are as French as French fries?
9 comments:
Trust me, it does get better. The holiday season is always hard to fill with nursing and I vividly remember our first year with Ben home we had a LOT of weeding out to do with nursing. We use Maxim too (but we are in Ohio) and we had so many no-shows, last minute call offs and many nurses caught sleeping. It is amazing that we got through it, but we did and you will too. If you are like me, I hate relying on strangers to take care of your child (someone so precious and important to you) so you can sleep, but you don't have a choice. You will find some good nurses though, it will just take a while. We are at the point where our good nurses are quiting to persue other job opportunities outside of home care, but we are definitely able to cope without a nurse better now than we ever did before. It is still hard, but we've figured out the best way to make it work for us (we take shifts and mine is usually from 1:00 a.m. on and during my shift I lay on the floor next to Ben's crib and snooze. I sleep so lightly that I can hear everything and plus his monitors and feeding pumps are always on). If you ever need to talk about nursing, trach frustrations or anything else, feel free to email me at amy.russo@gmail.com. Hang in there!
i think yuka shoudl come over and do a nite shift for you sometiem soon shes looked after trachs befor id turst her with my live love u
oh my, the photos of the toes in particular are so delightful and delicious to the soul! How spoilt I feel to gain from your lack of sleep with such wonderful photos. oxo,y
Those are adorable pictures and you always do a beautiful job at takeing them.
It does get easier I promise you that it takes time and you have to get into a routine.
I never got a nurse, Eva was not sick enough I guess to have one or whatever. But when she 1st came home we never had a feeding pump for about 2 months. That was hard since she had to eat every 2 hours. Then at 2 months old she had to go back into the hospital for her 1st heart surgery and they couldn't believe we never got a pump, now I have no clue who didnt do what but I had to wake up every 2 hours to slowly pour food into her tummy. I was losing my mind from no sleep.
Remember you can talk to just about anyone, the CHARGE group, doctors, nurses, friends anyone and see what other kinds of help you can get out there. There is a lot just sometimes we are not always told we have to pull it out of them.
Have you thought about respite? I do respite for anther little boy with special needs, I never got it myself because no one told me about it and now I do it...go figure, but it will give you some me time, you dont even have to leave him you can just get a shower in and maybe a nap. Go to the store and get some things you need or go out to dinner or something.
Hang in there hun it will be ok.
Hugs,
Crystal and Eva
It gets easier but there is no denying that the first year was really harsh for us. At the hardest times we did shifts (and still do sometimes say if Jacob is ill/sick) one looking after Jacob and the other resting, and his needs were mainly feeding frequently, cleaning up reflux/vomit and turning to keep him on his side so he was less bothered by pooling secretions - he hasn't ever had a trach. When we switched from bolus feeds to the pump things got marginally better. So I know it is harder for you with trach and suctioning - it's not really comparable to our set up. We had 2 nurses from hospital who came and did voluntary babysits and a little unofficial respite for us. We also got some home nursing hours but only 6 per week. Then eventually that switched from home nursing to respite care which we still get now. Like Amy said, I too sleep lightly so could snooze next to Jacob and hear every cough etc...
You have to take tuns to sleep and you have to get whatever respite is available. Keep asking everywhere including voluntary organsations. It is absolutely knackering when you first get home from hospital and you have all the appointments and home visits to deal with. Ideally you need a third person who can also trust with complete care (we have my mum) so you also get to take a break together... you might not find that third person immediately but keep it in the back of your mind to seek someone out and train them up eventually. Wishing you every bit of luck finding some decent nurses.....Once you have some good ones you trust it will start to get easier...Alexis xx
The pictures are beautiful. Stuart loved the very expressive picture of Reus eyes. I cant understand the awful added stress with the nursing care. It would have tipped me over the edge I think. We dont get any nursing for Alfies trach in the UK so from day 1 we have just had to find a routine. We thought we would never sleep & certainly not at he same time but we do. It is much the same as having a newborn, you tune in. We all sleep & we take turns to suction a few times a night. We don't have a monitor either, just us. We were offered 3 hours respite a week but turned it down. My mum & a great friend did the training & a tube change to be able to babysit once a week for us to go for lunch. I hope that things improve for you & you must sleep, but also you & Jason must be together as much as you can. Much love to you all, Sx
p.s. The holiday in Cornwall is lovely so far!
LOVE the "Lord of the Ring" and the one with Reu and Jason's hand :-). You are SO very talented with the camera... such an eye for the angles & light... and amazing perspective!
Keep 'em coming...
xoxox,
Kristi
saw u put more pics loving them
Squishy lovely, chubby and pink. Lovely photos of the blossoming baby Reuben.
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