Re: Our last 36 hours.....I need a break, Mallory and JoJO still ...

[Guest guest]

OH MY! So tired and you were able to type that whole thing. I would

definitely get you double checked out! It's probably exhaustion or maybe

another little one on the way. LOL!

I hope that the kids get better and fast. You need another vacation!

Cheryl

Mom to Jake (6 months and becoming a spoiled little one)!

[Guest guest]

Lori,

You felt that way too?I almost fell out of my chair when I was reading

that about her falling on the floor.I have a ganglein(sp) cyst on my left

wrist and it's huge.You can see it big time.It hurts sometimes to the point I

can't move my hand,but NEVER in someones wildest dreams would I be letting

them stand there in the office and cut on me.I could faint at the thought.

Mandy

Terr 7no cf & Seth 2 w/cf

[Guest guest]

Hello there =)))

I'm glad that you guys are home and had a safe trip, I hope you had lots and

lots and lots of fun!!! I hope your kiddos stayed health for most of the

stay. I'm sorry to hear that JoJo and Mallory aren't feeling so good and I

hope things will improve soon, and I hope that Mallory will not need a trip

to the hospital. My eyes used to swell (still do) whenever I get either a

nasty ear infection, sinus infection or both. A little puffy and swollen,

similiar to the look of someone who spent several hours swimming in a highly

chlorinated pool - puff eyes and reddness under my eyes, like a sunburn. I

also had 6 sets of ear tubes but they cleared up completely just before

starting kindergarten. Good luck with the ear infections!! I hope you wrist

is better! My sister will be going back to school in a few weeks and the

summer seems so short. I have thought about working on a webpage related to

CF and all the things that come it - mostly photos of what my Hickman is

like, IV antibiotics, morphine pump, my G-tube, the O2 systems, Dressing

changes, BiPap, Vest, Flutter, CPT, chest tubes and chest drains because I

have pictures of me doing most of those things. The things I don't have

photos of I might have my nurse or parents help me with. I have always wished

that there was something similar because it's hard to make choices about

things you've never seen before, and I aways wished I knew someone else that

had experiences those things. I might also include the types of homecare

I've had. But I also thought it would be for people to see that even though

I deal with these things - that I am still a happy person and those things

rarely get in the way of things I like to do. Anyway, I haven't told anyone

else about my idea yet, mostly because I don't know how good my energy level

is going to be but it is something I have to look foward to and having goals

that I'm working for. Sorry this email is sooooooo long. I hope Mallory will

be better soon!! I always have you guys in my thoughts and prayers - hugs to

all your bunch.

Love~

In a message dated 7/17/00 11:05:36 PM Pacific Daylight Time,

ron88jen@... writes:

> Hi guys, after you read this youwill realize that I have not read any mail,

> and you will see why. , the package will also be delayed. I have

had

>

> the 36 hrs from you know where.

> Anyway, last night I got a call from the hospital about one of our

residents

>

> taking a serious turn for the worse. Had to go to the hospital (she is

the

> one who spent 3 months on the vent last yr) Anyway, long story short, she

> is

> dying.....so I got home from the hospital around 3 a.m. and went in to do

> nebs, etc on the kiddos, then about 4 puked (very unusual for him)

so

>

> I took care of him. Climbing into bed around 4:30 a.m. I suddenly

> remembered

> that I was supposed to be in Chattanooga (2 hrs away) at 9 a.m. So much

for

>

> sleeping (this was one of those work things there is no way I could get

out

> of...). Anyway, we had already decided that JoJo needed to be seen by the

> ped. and that Ron would also call to get an appt for me, too, for my wrist

> which I suddenly can't move (our new ped. has been mine and Ron's doc for

> some

> time, she is double boarded in internal med. and pediatrics both)

Anyway,

> so he got the appt for 3 so I had to drive like crazy to get back from

> Chattanooga in time. I took mall with me on a hunch....she really looked

> bad

> and I couldn't figure why her eyes looked half closed and she had been

> lethargic all day, ears still draining. Anyway, the ped. thought she was

> the

> patient, so looked at her first (I told her we didn't have an appt for

her,

> but I'd trade mine, but she said she didn't mind and wanted to look at her

> b/c by that point Mallory had fallen asleep on the exam table, something

no

> 2

> yr old does at 4 p.m. Anyway, she looks in the left ear, and said ...her

> ear is awful, its all full of green stuff, this is terrible, blah blah

blah.

>

> I told her, no, thats the good ear, its the other ear that the CF doc

wanted

>

> checked in 2 more days from now (though the ENT office has yet to return

our

>

> call for that appt anyway...from 2 weeks ago!) She didn't like the way

Mall

>

> sounded and the way she was breathing, and she said she looked very

swollen

> and she didn't like her resp. rate (though it was in the high 30's, and we

> have seen it in the 70's). She said that both her ears were awful...I

told

> her she has been on the Cipro. She said she hadn't seen that bad of ears

in

>

> years. She put calls in right that minute to the Ent and also to the CF

doc.

>

> So then on to JoJo, who she said had bacterial sinus infection, bacterial

> bronchitis, and bacterial double ear infections....he was easy, put him on

> Omnicef. He was 17 lbs on the money, by the way, for those watching his

> weight, lol. So then on to me, I have ganglion cysts (spelled wrong?) so

> she

> suggested we aspirate them so I can do CPT etc. So I swear that I held

JoJO

>

> on my left hip while she uses needles to try to find the cyst and aspirate

> them (thankfully I am not needle phobic...and have a high pain tolerance)

> The only thing is that I forgot to mention that I had forgotten to eat

> anything all day....not to mention the fact that I got no sleep all day.

> All

> of a sudden I got really dizzy and the room started

spinning.....embarassing,

>

> huh? I had to shove JoJo at her on the way to the floor (bet she doesn't

do

>

> anything like that on someone standing up holding a baby again, lol) I

was

> really embarassed, but she felt bad. Anyway, back to Mallory, still no

call

>

> back by the other 2 docs this time (by the way, when all this happened, we

> were the only ones in the building, everyone else had gone home). She

told

> me she really wants to work on the ENT especially to be more aggressive,

and

>

> she'd call me when she heard from them. The CF doc called later in

> evening...suggested we admit her tomorrow for IV's b/c he said he doesn't

> have anything else to offer better than oral Cipro. Also he said the ped.

> was very concerned and that he is also concerned. He said they could drag

> the ENT into it that way, as an added benefit. (we had to do this once

with

>

> toget the ENT to act). As an alternative (b/c he knows we try to

> avoid the hospital), he could call the ENT in the morning and try to get

him

>

> to work her in to " drain " her ears.

> At this point, I am too over it to make a decision. Mallory really looks

> awful. But she didn't throw up tonight after the cipro, so maybe I can

wish

>

> that she will look better in the a.m. all by herself. Kids have a way of

> bouncing back like that. I don't understand this swollen thing and why

her

> eyes look half shut. The ped. thinks thats her sinuses, I have no idea.

I

> guess it happens so slowly that you don't notice til someone else sees

them

> without seeing the gradual change. So anyway, I have no idea what we are

> going to do. If she looks in the morning like she looked tonight, I guess

> we

> will let them admit her. Don't know what else to do. Maybe its just b/c

of

>

> our resident in the hospital, but for some reason I am really paranoid

about

>

> Mallory right now and worried about why she looks so bad. Anyway, so

thats

> up with us. I had to go back to the hospital tonight to check on the

> resident....kidney failure, so won't be long now I guess for that.

> I guess I will go do another neb on Mallory, at least I will feel like I

am

> doing something.

> Take care everyone, , I promise we won't forget you, gotta get

> through

> tomorrow first. I am exhausted, overwhelmed, and we are at our wits end

> finally with Mallory.

> to sleep.....perchance to dream, no scratch that, don't want to dream,

just

> sleep....

> Night,

> Jen

>