Re: Kathy

[Guest guest]

Kathy, Sorry to hear of the tough times Aimee and Audrey are

having. Are prayers are with them.

Geri-Anne and Wyatt, Complex I

> Debbi,

>

> I am glad to hear is home. As for the Hospice, Audrey

has been with

> Hospice for over a year now. They are wonderful. It was a hard

decision to

> go with Hospice as people always think the worst is about to

happen. For

> Audrey it has been a real help and it is considered for of

Palliative (SP)

> care. They are there for all kinds of support, pastorial

services, counceling

> services, medicines are supplied, diapers, and just about

anything Audrey needs

> is taken care of. For children it works a bit differently than

for adults,

> especially children with mito.

>

> Unfortunately right now Audrey is not doing very well. She has

another

> virus, what the docs are saying is hand, foot and mouth disease.

She is also

> having diarrhea and vomiting with it plus a fever. Last year Dr.

Cohen didn't

> think she would be with us for her second birthday, but on the

10th she will

> be three. Amie doesn't say much, but she always gets very

worried around her

> birthday. She called and wanted me to come down tonight for a

while so of

> course I went right away. Amie is having a really hard time

right now and is

> very scared. I don't now what to say to her when she cries, she

just wants

> her baby to be normal, and of course we all know the answer to

that. My heart

> breaks for them and for me as well. I try not to cry when I am

with Amie,

> but sometimes I can't help it, so, we just sit and cry together.

Audrey is

> getting so weak and she seems to get a virus every other week.

She gets over

> one and then another one appears, and after each one she is even

weaker. Her

> smiles are still there but sometimes you can see it only in her

eyes. Please

> say a few extra prayers for Audrey tonight as I will for your

sweet .

>

> Please keep me updated, if you would like to email me privately

that would

> be fine as well.

>

> Praying for all,

> Kathy, grandma to Audrey, soon to be 3 years on the

> 10th!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

[Guest guest]

Hi Kathy;

Here's the website that was forwarded to me re: cough assist machines. It sounds like it might be something for Amie to look into. http://www.jhemerson.com/coughassist.htmPlus, you're in the US and Medicare covers it in a lot of cases. Here in Canada, no one had heard of it when I started looking into it. So it's definitely not covered by insurance. The cost is ~$7000.00 U.S. If you look up Dr. Bach from New Jersey there's an article on him. Sorry but I've misplaced the address.

Thanks to you for sharing your experience with Audrey's sibs. It really does help prepare us mito parents for creating a healthy forum for discussion.

Take care,

Peace be with you,

kathy boone wrote:

,

Sorry Kirk can't use the Vest. What is a cough machine? In order for Audrey to cough Amie has to stick the suction catheter down Audrey's throat to gag her and then she will cough a little. She has practically no gag reflex anymore.

Audrey has been OK the last few days. No more spells like Monday night, thank goodness. Amie did talk to the doctor on Tuesday after having had to call them Monday, (Audrey actually has two peds, they are a husband and wife team and just fantastic)and she said they were at the end of what to do with Audrey and they a were going to call the Neuro or possibly Dr. Cohen and get some advice. The wife part of the team is very attached to Audrey and has a hard time not crying when she is with her, it goes way past being a good doctor.

You mentioned in an earlier post about having a talk with your other boys, Amie and Doyle have had that same talk with their other children,(his and hers). They try to include the children in as much of Audrey's care as they can do and in helps them to feel like they are doing something for their sister. They also get in the hospital bed with her and watch TV or read her books. They are very aware of what is happening to her and what the outcome is going to be and they speak openly about it. Sometimes it is very difficult to answer their questions because our emotions are also involved but we all realize their questions need to have answers. Their is also a wonderful Chaplin from Hospice that has been great with the kids.

Hopefully we will have a wonderful Christmas as I hope you all do too!

Kathy, grandma to Audrey, 3 yearsKilbride wrote:

Hi Kathy;

We can't get a vest for him because his bones are so brittle. Thanks for your support. I hope things are o.k. with Audrey???

mom to Kirkland Complex Onekathy boone wrote:

,

My prayers are with all of you. As I read your post it made me think of what we have been through with Audrey. Have you tried a percussion vest for Kirk? It is what they use for kids with CF. Audrey got one a couple of months ago and I think it has helped with the congestion. She doesn't like it very well, but.......

I hope you get some much needed rest.

Prayers with all of you,

Kathy, grandma to Audrey, 3 yearsKilbride wrote:

Hi everyone;

I just finished one terrible evening. Darla we're keeping up with you neck & neck. I typed out an update on Kirk's caringbridge page and have copied it for you all. I'll check in tomorrow.

Take care,

mom to Kirkland 3.5 yrs, Complex One Def

Journal

Thursday, December 9, 2004 10:23 PM CST

Hi all,Okay, I'll try this again and hope I don't lose the entry again.Tonight's been a rough night for us and I'm just sitting down for the first time since around 4 pm. Jody and I started suspecting that something might be brewing with Kirk this a.m. He's been experiencing urine retention more often and he was also sneezing today and that's not a good sign.He's still on one of the antibiotics that he's been on since coming home from the hospital last week but he finished the other one yesterday. We called his paediatrician to see if she considered it time to put him on prophalactic(sp?)antibiotics (a low dose of antibiotics on a continuous basis from now on). I've been really scared about what would happen when he finished his current antibiotic. She agreed and ordered Bactrim today. Apparently we didn't act soon enough. Things started to worsen with Kirk this afternoon with Jody. His breathing problems worsened and it was increasingly

difficult for her to bring his O2 saturation rates up to acceptable levels. She was pretty shaken when I arrived home from my errands.After she left, the same difficulties arose with me. Usually I can stabalize his breathing but it wasn't happening tonight. His sat rate at one point dropped to 68%.Fortunately, his other nurse came on duty for a night shift at ~7P.M. and picked up his antibiotic renewal for us because Gerry had an exam at night school. By the time got here I was quite frazzled. Of course the boys were still up after having made their own supper of peanut butter sandwiches and I was drilling them both for their spelling dictation as I worked on Kirk's chest and asked them to co-operate as best as they could so I could try to keep Kirk home and not call an ambulance.I started re-packing mine and Kirk's hospital bags but wasn't convinced that we would be going. I just couldn't see us going through the exact thing we went through two weeks

ago. Was it going to get us anywhere?The only hospital I thought we should be considering was Sick Kids and that's only if we wanted him to be on a bi-pap machine to help him breathe. The problem is: no ambulance will transport us to Sick Kids or Trillium when Kirk's in distress like this. I knew we'd have to throw him in the van and take him ourselves yet his breathing was too unstable. By this time Kirk had a fever of 39 degrees C. so some virus or infection had definitely set in. suggested we call in Dr. Zeni (our palliative community doc.) and he came right over thank goodness.It was another very difficult decision to make, but we've decided to fight this one out at home with his help. We'll just have to let Kirk try to fight it off and hope he wins the battle for now. It's really hard turning the alarm down on his pulse-oximeter and allowing his spO2 levels to drop below 89% but again, we're faced with the dilemna of whether to intervene and go down

that familiar hospital route.It's awful to be in this predicament but I have to consider Evan and Carson too. I really don't know how much longer they can tolerate all of this stress before they really start acting out and develop behavioral or emotional problems. As it is, last Friday I was forced to have the 'dreaded' conversation about Kirkland's future with them. Evan was listening in on the other phone line and heard me mention something upsetting about Kirk's health status. I had to immediately talk to the two of them about what is likely going to happen to their little brother. This week, no doubt has been very traumatic for them. I don't know what another hospital stay right now would do to them and as Dr. Zeni says, we wouldn't be doing much more at town Hospital than we are here at home.I pray that the boys continue to cope and communicate about their thoughts and feelings. Evan's been openly sharing tidbits about Kirkland during health class

at school and has been discussing his feelings in group share sessions with his class so this is a relief for his teacher and I. We've had a lot of talks about WHY??????? and I try to give them simplified yet honest answers. Carson is dealing with it too but through the innocent eyes of a seven year old.We've talked a lot about souls and with that- the possibility of reincarnation. He's decided that after he's been in heaven for a while and has had a rest, he wants to come back to earth or another universe as a dinosaur. What a case! Heavy stuff to be dealing with but he's got the main jist.Anyway, I'm going to try to rest for a bit. To our medical friends and professionals who are checking in, here's the latest report on Kirk at 24:15 Fri. Dec. 10, 04SPO2=94% on 3 litres nasal prongs/ 5 litres maskheart rate=164 [at it's highest it was 180 (Evening)]resp.= 40temp.=38.5 deg. C.He's had increased seizures, given diastat ~22:30He's

receiving tylenol q4hrs / advil q6hrs / -hasn't brought his fever down yet.He's still on clindamycin q6hrs / Bactrim's been adjusted by Dr. Zeni from 7.5 ml od to 7.5 ml BID Both via G-J tubeIn & Out catheterizations ordered by Dr. Morra today PRN Gave 4 ml glycopyrollate at ~10 p.m. per Dr. Zeni (PRN)He's trying hard to sleep.I'll post again tomorrow with any new updates.until then,luv Now I lay me down to sleepI pray the Lord my soul to keep,If I should die before I wake,I pray the lord my soul to take.God bless...all of you!Good night.

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