Very exhausting times. Had to ER yesterday as Reu's stoma isn't looking good and I believe there's still a hole from the trach but the Drs feel it's an infection so antibiotics #3. I'd envisaged the drainage to stop post surgery but I'm told with the degree of scar tissue it'll take a lot more healing. I don't to clean too hard as the stitches are still there. By myself now since Friday and just interviewed a new nurse as been nurseless too since then. My house is a tip so I'm writing this to vent when I know I should be cleaning. Particularly find the daily round of 12 meds and 4 breathing treatments a huge challenge as when I put the boys to bed, I think of what there still is to do before I can get some sleep, then I'm up repositioning Reu and looking after him during the night. Getting up for school and the 1hr drive not easy especially as during mornings like today and yesterday, the reflux was severe and poor Reu was throwing up repeatedly for an hour. Very heartbreaking to see him like this, crying through the throw ups and Callum looking at him with sweet empathy and saying "messy Reu Reu". I know I need more time for reading and other developmental stuff inc PT, OT and speech which have been non existence since June. Despite this, bathtime yields lovely spelling time with Reu and I'm always so delighted as he reads new words for me.
8 comments:
oh you must be exhausted. so much going on. good luck with the nurse hunt, i'll keep my fingers crossed!
I'm sorry it's such hard times. I wish I lived closer so I could lend a hand.
Sending lots of healing love to you Reuben and just lots of love to Callum.
Forget about the house! Just concentrate on you and your family.
Hang in there Mama!
I'm so sorry you have so much work and worry and I am so sorry that Reu is sick and in pain. I just erased the three pages of ranting I wrote here and, instead, will keep it short. I don't pretend I have gone through all of the things that you have but there have been a few scary episodes where doctors who didn't know Rachel jumped to easy conclusions (the Down Syndrome) instead of finding out what was really wrong and because of that, we came very close to losing her. I know how I felt those times, how it tore me up inside. My thoughts and prayers are with you and Reu and Callum - always. Thank God the boys have such a strong and loving mother!
Thinking about you guys, and totally feeling right there with you, Catherine.
You all are never far from our hearts...you know you were our first friends we met on this journey =)
Please keep us posted on sweet Reu, and his upcoming spinal surgery - I have been praying about it...i know that it will be quite the adjustment at first, but i also know you will handle it all so beautifully and gracefully like you guys do with everything - and before you know it, Reu won't need it anymore, and he will be completely recovered!
I should prob be heading to bed bc i am rambling (prob should have hours ago) but wanted you to know I am here, always checking in.
Lots of love,
Victoria
Hang in there! Sending you wishes for easier days ahead, :)
Best of luck to everything...
Focusing for Reu..
Catherine ...stay strong and remember you will always be with your angels...
Through hardtimes as we all have our moments...with faith in GOD...you will see the light with trust and belief....
With thoughts and care always,
FRIEND
I hope he's feeling better... forget the house... if everyone is fed, clean, warm and safe, the rest doesn't matter so much.
I do hope you find the strength to carry on, I wish life could be easier on your dear little fellow- he is so cute. I have not written anything in english about our little babyboy- but he spent half his life in hospital, and living far away from a hospital- we had to take all the responisbility when we were at home with him- so i really feel for you- and wish i could have lend you a hand and som help with the cleaning- I used to dream of someone coming over and clenaning my house- or babysitting our eldest- or perhaps just making dinner...Wishing you all the best!!
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