Re: You burning the midnight oil too?

[Guest guest]

Hi Darla;

Thanks for the response. What an awful night! Sats are up to 96-97% now so I think I'll try to catch some winks while I have the novelty of a nurse for the night.

Glad to hear the girls are fighting things off at home so far.

Get some sleep.

luv Darla Klein wrote:

, I am so sorry to hear he is struggling again so soon. Thus far our girls are holding on. Definitely struggling, but home thus far. Asenath's blood pressure was pretty low today indicating she is dehydrated and her diarrhea isn't too good, but otherwise she is actually doing ok thus far. She did go to sleep a little early tonight (after we took her to see the holiday lights I spoke of in another posting). Zipporrah is pretty run down and walking like a drunk as her therapist said today. Extra fatigue and stuff kicking in. I will keep you in our prayers. Take care and give me a call if you need a friend to talk to. :)See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath

(4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Here we go again> 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, 04>> SPO2=94% on 3 litres nasal prongs/ 5 litres mask> heart rate=164 [at it's highest it was 180 (Evening)]> resp.= 40> temp.=38.5 deg. C.> He's had increased seizures, given diastat ~22:30> He'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 tube> In & 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 sleep> I 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.>>>>>>>>> ---------------------------------> Do you Yahoo!?> Dress up your holiday email, Hollywood style. Learn more. Please contact mito-owner with any problems or questions. __________________________________________________