Update on us

[Donna Thomson]

Hi Dear Friends,
Well I am kind of tired tonight. It's been busy around here lately. First, my Mum. This week, we thought she had CDiff back again. Turns out it is just the flu with a bad cold but I went to Montreal and organized a caregiver, did groceries and made apple crisp and soup and stuff. So that was good and I felt a lot better after doing that. But my sister's daughter is in the hospital with an awful set of circumstances and I've been trying to help quarterback some additional information and maybe a second opinion. The underlying condition is CVID (Common variable immunodeficiency disorder) and the treatment is immunoglobulin infusions. Well she had her first one and got a 3% chance of cyclical migraine called status migrainosis. She hasn't been able to get out of bed - double vision, vomiting, the whole nine yards. Anyway, today for the first time, she seems to be responding to the treatment and maybe she'll be released tomorrow. Thank God!!!

Nicholas is not doing all that well, but not that badly either. He's not at death's door or anything, but we are all getting mightily peeved with him feeling nauseated every day and not being able to sit up even. Anyway, I thought maybe today it was a UTI but the dip stick unfortunately was negative. Anyway, I was just hoping, I think the problem is pseudo obstruction - he's at high risk because of being bedridden, having CP and being on so many pain killers. His gut is not working very well these days. We're waiting for a gastro consult and we've made it an urgent request. We'll see when we get that call. Hopefully soon!!!

Anyway, tonight I'm waiting for my daughter to come home from the airport. It's Canadian thanksgiving weekend and her flight was very delayed, but she will be home soon. Tomorrow we'll visit Nick and then go to the cottage for the weekend and come home on Monday morning to Nicks' where I'll make a roast chicken with stuffing (he likes it better than turkey) and all the trimmings. Natalie flies back to Toronto Tues morning.

Hoping that everyone in my family will feel better soon! It's not an emergency like you had with Jon, Rose, but a dull worry that has been kind of throbbing lately, you know? Anyway, I will sleep tonight with my baby girl home!

Lots of love to all my friends here on CN - blessings to you all.

[Earth Mother 2 Angels]

((((((Donna))))))

Three loved ones ill at the same time is quite a heavy load. Healing prayers are going up for your mum, your niece, and Nick.

I hope the Gastro doc consults very soon. Last year, the GI's mentioned something like an intestinal bacterial infection, which is impossible to diagnose, as the cause of Jon's GI issues. But it was never defined. If he does have a pseudo obstruction, how is that treated?

So glad that you have your Natalie close for the weekend's celebrations. Hoping that you have a lovely time at the cottage, and that your mum, niece, and Nick will all be feeling stronger and healthier soon.

Happy Canada Day!

Thinking of you ~

Love & Light,

Rose

[Donna Thomson]

Thank you, my friend. I'll keep you posted on how it all goes. My Mum has a helper coming in today (she likes the new one and hasn't fired her yet, hallelujah!) I haven't got an update on my niece yet this morning, I hope it's all going in the right direction. I'm packing up the Thanksgiving feast preparations now to pack for the cottage. I hope your sweet Jon has a good day today (if he does, you will too.) xoxoDonna

[mg12061]

I agree with Rose having multiple sick family memeber sure is a lot to handle. I'm sorry that Nicholas isn't well. I can certianly understand how awful the constipation can make someone feel. Kathleen's lucky if she has 2 days feeling OK. We're still working on adjusting her Amitiza for constipation. Praying the GI Dr. can help him. I hope you all enjoy the Holiday weekend!
Mary Grace

[andromeda31]

Happy Thanksgiving! Hope you have a good time at your cottage and can relax and unwind! Prayers that all of your family improves! Your Mum sure sounds feisty! Glad she likes her new caregiver!! :)

Lisa O.

[Earth Mother 2 Angels]

((((((Donna)))))))

Forgive me! I'm losing brain cells rapidly, I guess. I know it isn't Canada Day!

HAPPY THANKSGIVING!!!

Hope you have a lovely, relaxing weekend.

Love & Light,

Rose

[Donna Thomson]

Hi guys, we just got home from the cottage where we dogsat my sister's golden doodle Oscar and had my niece up (sick one's twin) and just came home. Jim's gone to get Nick now and we'll have the afternoon and Thanksgiving dinner here at home together. That will be good, thank goodness Nick is feeling OK today. Yesterday was not so good. He felt sick again in the afternoon, looked awful, urine retention, slept for two hours. It's the same pattern most afternoons. So strange, and I think it might be pseudo obstruction from being bed ridden and years of pain killers plus his CP of course. Anyway, looking forward to a lovely afternoon/evening today. My niece came home from the hospital in Toronto this morning and hopefully she will recover better out of that place, she's still symptomatic, but doing better. Thank you for your prayers everyone! xoDonna

[Earth Mother 2 Angels]

((((((Donna, Jim, Nick, & Natalie))))))

Hoping that you all had a wonderful day together.

That's good news that your niece came home. I will continue to pray for her healing.

Oh, I understand your frustration so well over Nick's daily mysterious condition. There has to be some correlation of some factor to the time of its occurrence each day. It just seems logical somehow.

What we have learned with Jon is that he couldn't tolerate real food any longer after he got his GTube and was on formula for awhile, before we introduced the blenderized diet. Then we discovered he couldn't tolerate cranberry, pineapple or prune juice any longer. Then we discovered he couldn't tolerate bolus feeding any longer. Now that he's on a feeding pump, his rate is 90 cc/hr, and he can handle that amount, but probably no more than that.

I wonder whether Nick's GI doc would suggest lowering Nick's hourly rate and extending the hours of feeding. And I also wonder if Nick's digestive system might not be up to digesting real food, when it is used to pre-digested formula. I think that's what happened to Jon's gut. It got confused between formula and food.

Another thought ~ abdominal seizures? Or Gut-Brain connection?

The urine retention caught my eye too. That causes nausea for Jon sometimes. It did tonight. He's peeing okay now with the cath advancement, but he's filled with gas and fluid suddenly. He tossed his cookies, and he has a lot of saliva, so we've been suctioning.

How is Nick's overall daily urine output?

Oh how I wish I could solve Nick's mystery. I'll keep thinking and praying.

Sending lots of strengthening, positive energy your way ~

Love & Light,

Rose

[mg12061]

It can get very fustrating and exhausting trying to figure out these "mysteries". I hope you can piece it all together and get some answers. Kathleen as you know has a lot of GI issues and when she hasn't gone in a few days she has a more difficult time peeing. She was diagnosed with neurogenic bladder so there's issues with that even without the constipation added in.
Mary Grace

[andromeda31]

Hi,

Wish I had some ideas....thinking of you and hopefully the doctor will figure it all out! I saw that Nick is having a an appt soon, so glad they fit him in!!

Lisa O.