MD-List : Messages : 21000-21029 of 22639

Brenda. I have read everything you have sent. I do not know that I could have been as patients as the two of you throughout all of this.

First, I have two question. You sign yourself as “caregiver” to MJ, are you also Mom? I could never really figure that out. I must have missed something, but I thought you guy were in New Jersey?

I know how frustrating it is to try and work with some medical professionals, and I do hate to use that word, as some doctors truly are not.

As a parent of a DMD guy, I know that Cincinnati Children’s Is a great place, at least for the DMD’ers. Not sure how knowledgeable they are on SMA.

You and MJ have been in my prayers, always.

Adele, mom and caregiver to Jason, 22 w/DMD

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Brenda
Sent: Tuesday, April 01, 2008 2:57 AM
To: nivusers@yahoogroups.com; feeding_g-tubes@yahoogroups.com; MD-List@yahoogroups.com; tubefeeding@yahoogroups.com; our-kids@...; gtube@...; TRACHTIES@...; our-kids-adults@...
Subject: [MD-List] Listening Skills, Doctors and SMA Care

Listening Skills, Doctors and SMA Care

Hi all;

Today was not a good day from the perspective of medical care and trust in the doctors to do the right thing. Dr. Mueller was on today and right away it proved to be disappointing. He came in and wanted to hear our thoughts and said, “This is what we are going to do, but the orders were written for something else on several of the issues brought up.” It was like hitting your head up against a brick wall. MJ felt like no one really listened to her concerns today and what they say and what they do are two different things.

Today was frustrating and tomorrow we will once again have to start to demand things. It seemed like things were going better but today it sucked! When we moved to Ohio, everyone told us NOT to go to Dayton Children’s Hospital because they downright sucked when it came to the care of SMA kids. We thought we could teach them a lesson and help make the hospital SMA friendly, but I’m not so sure now. MJ’s October stay was pretty good with only a few glitches, like with the surgeon, who has since retired. This time, we seem to hit a brick wall with every pulmonary doctor no matter where we turn or whatever problem we encounter. Tonight we are seriously considering being transferred to Madison or Cincinnati if need be.

Please pray for us to make the right decision here and to guide us and guide the doctors into listening to us in meeting MJ’s needs as she makes them known.

Special thanks to Casey and Colin O’Neill for the wonderful picture frames, the letter and the artwork. We love everything. You sure made MJ’s day! Special thanks also to the Kay family for dinner. It was delicious. We hope everyone is feeling better today and you get some rest too. Thanks everyone!

Brenda
caregiver to MJ, 20, SMA type 1

http://www.our-sma-angels.com/Margaret/ - MJ's website
http://www.our-sma-angels.com/b4sma - MJ's organization

"Far away in the sunshine are my highest aspirations.
I may not reach them, but I can look up and see their beauty,
believe in them, and try to follow where they lead."
~Louisa May Alcott~

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#21028

From: Brenda <BracinKnee@...>
Date: Tue Apr 1, 2008 6:57 am
Subject: Listening Skills, Doctors and SMA Care

bshanson68

Offline

Listening Skills, Doctors and SMA Care

Hi all;

Please pray for us to make the right decision here and to guide us and guide the doctors into listening to us in meeting MJ’s needs as she makes them known.

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#21027

From: denger2@...
Date: Mon Mar 31, 2008 10:37 pm
Subject: Senate Appropriations Letter, Action needed today!

adenger

Offline

The Senate is now considering this year’s spending priorities and as part of PPMD’s Legislative Agenda Senators Susan Collins, ME, and Sharrod Brown, OH, are circulating a “Dear Colleague” letter to the Senate Appropriations Committee for support of NIH and CDC programs for Muscular Dystrophy research. Due to many issues, including the a very busy Congressional Calendar, the time frame to close this letter is fast approaching. The deadline is Friday, April 5, 2008!

It is imperative that you contact your state’s two Senators and ask them to sign in support of the letter Senator Susan Collins and Senator Sharrod Brown are circulating to support funding for important MD research programs. The more Members who sign the better chance we’ll have for funding. The simplest thing to do is to call your Senators office, ask for their Health Legislative Aide and tell them you would like them to sign this “Dear Colleague” letter on behalf of your family. You may find your Member’s Washington, DC phone numbers by visiting www.senate.gov and searching by your state.

Thank you for your attention and efforts in this very important issue!

Brian Denger

Maine

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#21026

From: "Adele" <jasona65@...>
Date: Mon Mar 31, 2008 6:44 pm
Subject: Hey George

navymom2josh

Offline

Hey George, You’ve been very quit of late. Isn’t it getting close to Alex surgery?

Send and update.

Adele

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#21025

From: "David R Ciotola" <actionpatient@...>
Date: Mon Mar 31, 2008 4:52 pm
Subject: Re: Lemons, Brownies, and Extreme sports

dciotola

Offline

Hi Brenda,

Sorry to hear about the continuing problems. I did want to mention one thing though. If she is still having foot pain you might want to ask physical therapy if they can come in with ultrasound. This is therapeutic deep heat that can relieve pain significantly. It would be done probably once a day for 12-14 days. Usually after that number of treatments pain starts to markedly reduce and it only takes about 5-10 minutes a day. Ask your doctor and PT!

David

#21024

From: Brenda <BracinKnee@...>
Date: Mon Mar 31, 2008 6:58 am
Subject: Lemons, Brownies, and Extreme sports

bshanson68

Offline

Lemons, brownies and extreme sports

Hi everyone

Sorry for the late hour. It is 2:30am here and MJ is finally feeling less nauseous. Once again, between 7pm and 8pm, MJ starts off with a little bit of nausea but it just keeps growing despite multiple drugs. Tonight, nothing seemed to work. We tried an extra dose of nubain and finally at 2am tried Kytril again which worked right away. Yesterday, we gave it before the extreme nausea but it didn’t work for 4 hrs. The night before and tonight, extreme nausea had kicked in and it works right away.

Thank goodness Mueller is on this week because we are going to discuss her meds and see if we can get rid of the drugs that aren’t really helping. We need to figure out this “extreme nausea” (like a new extreme sport…how long can you stand to be nauseous?), since it really wears MJ out. During the day, she seems to do pretty well, we should start getting her up during the day so once night time hits, she is already been up. The problem is, MJ is so tired from refluxing and trying to puke that she has no energy. We have all week to work on these issues and try to get things working along with Carvahlo’s help.

Special thanks to Kim J for the “note” message. We taped a note onto Queenie the bears foot and she sits at the foot of the bed, and we also taped one above MJ’s bed. It says, “Squeeze a Lemon…Not my Foot!! Thanks! LOL!!! The nurses love it! Also a huge thank you to the Denk and Doebbert Families. Dinner was wonderful and the nurses, RT’s, residents, PCA’s, etc, all LOVED the brownies. At least they had lots of sugar since MJ kept them on their toes tonight. Thanks also for the gift certificate. You guys did too much and we so appreciated it. We love you all!!

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#21023

From: Brenda <BracinKnee@...>
Date: Sat Mar 29, 2008 5:48 am
Subject: nausea and environmentally friendly paint

bshanson68

Offline

Nausea and Environmentally Friendly Paint

Hi everyone:

Short update tonight. It was a long day, that is for sure.

This morning we were woke up early by loud staff and tight lungs. Wasn’t sure what happened over the past few hours, and when I went to get ice, I quickly discovered the truth. In the main part of PICU they were painting and since MJ is allergic to fumes, she was having increased mucus. They tried to assure us that they paint was environmentally friendly but we weren’t buying into that at all!!

Our morning was filled with coughing and our evening was filled with nausea. All the extra mucus landed in her belly plugging up her Gtube and not allowing any drainage to take place. Tonight, after trying Benadryl with no success, they brought out the big guns and she got a large dose of kytril. Boy did it help and help quickly.

Special thanks to the Reed family for dinner. It was good. Thanks again for helping us out.

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#21022

From: John Herrmann <johnrsf@...>
Date: Fri Mar 28, 2008 9:34 pm
Subject: New Blog Post 3/28

johnrancho

Offline

Check out my new blog post www.johnrsf.blogspot.com

Peace,

John

There is no cure for birth and death save to enjoy the interval.
--George Santayana(1863-1952)

My E-Mail: johnrsf@...

My Blog: www.johnrsf.blogspot.com

My Website: www.geocities.com/johnrsf@...

Yahoo IM:johnrsf@...

Yahoo Groups ID: johnrancho

#21021

From: Brenda <BracinKnee@...>
Date: Fri Mar 28, 2008 5:33 am
Subject: clot busters, rolling, and going green

bshanson68

Offline

Clot Busters, Rolling,& Going Green

Hi all:

Another day gone and we have hit day 60. We can’t really say “time flies when you are having fun”, that is for sure.

Today started off with Abby coming in and wanting to increase feeds. MJ said no, so she kept pressuring and finally left. Dr. Fink came in and we talked about the reflux from last night and what to do about it. Basically, we are stuck between a rock and a hard place regarding reflux, unless Dr. Carvahlo has an idea. MJ has maxed out on meds and the only other option is surgery which is a big NO right now. Dr. Carvahlo was supposed to come by and talk but never showed up so we stayed at 30cc/hr for the day.

MJ got a visit from IV therapy this afternoon. Last night blood couldn’t be drawn from her PICC line so the clot busters were called in. After sitting for 30 min with it in, the line was functioning again. What a relief. Abby kept trying to increase the feeds and I said based on the reflux and the fact that MJ was still coughing stuff up that looked like stomach contents; we were content with staying where we were at.

Tonight after night shift started, MJ got up in her lift. She felt pretty good so I convinced (okay, I coerced her to get up in her chair). She got up with minimal issues, thankfully Lindsay was there to unwrap the IV from around the lift) and MJ instantly said, put me in gear. We went for a 15 minute walk with MJ in control!! Away we went up and down the hall, over to PICU for a visit and back to visit our friends down the hall. MJ had to call her dad with a special memory while being up. To see new pictures, please visit: http://www.our-sma-angels.com/Margaret/trach_pics.htm

After laying down and situated MJ got all her meds. She is trying to wean off Nubain during the night. She got her 10pm dose and isn’t getting any more until she asks for it, instead of the nurses giving it at set times. They will still be doing nausea meds around the clock, but she is trying her hardest to get off the pain meds. Before bedtime, MJ’s G-tube vent was bubbling so I went and looked and the day ended on a “green” note. Coming out of her stomach was her formula, yet again. We called the resident, who thankfully is not colorblind, and verified that the neon, fluorescent color was definitely green. So tonight before sleeping, we put the formula back down to 28cc for the night to see if it would slow down.

Tomorrow is yet another day and we shall see where we stand then. Special thanks to Jeni and family for dinner. It was wonderful and very much appreciated.

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#21020

From: "Pirate Tigger" <greg1960@...>
Date: Thu Mar 27, 2008 7:16 pm
Subject: O/T Hello, Thursday, March 27th 12pm

tiggers2000us

Offline

Hello all,

Hope you are all doing good and having a good day. Been a very busy few days here and I am way back on my comic and email sending and reading now and getting deeper and deeper now lol.

I got my new power chair in use now and for the most part it's great, very fast chair and I did not like the new gel seat as much and Brian fixed the old seat and the chair so we can use it for now. I will use the other one on days my butt is not hurting as much. I guess I need to get use to using the other one and I want to get a wider one. I am having a hard time finding places and ways to have my feet up and the one keeps falling asleep. Dave is getting my pads for each side that will push my legs together so my feet are on the leg rest better and I can use the power foot rest now, just a bit hard and having to keep moving my legs and feet to find a place and way that does not hurt. I am learning a I go. I did not get to go far yesterday as the winds were too high for me. I did test all 4 gears and go get mail and the chair is just right speed for me in 3rd great, just under 4.7 mph and top speed was 6.0 or so and Dave need a newer up to date tool to set the speeds, brakes and stuff as my software on this chair is too new. And this is a very good chair, best base of anyone made now and he has not had any service calls for this chair since they started getting them. Will take some time to get use to the mid wheel high speed as it turns too easy , well based on my use of my old ranger chair what was rear wheel drive. I am getting use to this chair so far and have my legs all the way down and off the rest now and no pain for now. I need to get a new leg rest for the house as I think this chair is higher and that is why my legs are hurting.

I got to have Taco's from Del Taco last night as it was taco night and I think tonight is baked fish for me and mom got to pick what they are having and forget what now. Will have fries and a good vegs also.

Had some super bad bleeding in the bath room today, but it was ok by the time Rosa got back from a smoke, need to use my meds for it more and my blood thinner level could be a bit too high and from seating in the new gel seat. Going to take them tonight and see how thing are in the morning.

Breathing has been good and I have no sick of being sick from Rosa and she has a bad cold that has been going around here and turns bad in your lungs fast and has put a lot of people in the hospital. Rosa new doctor that the ladies she cares for try's to keep people out of the hospital and says they will get better care at home. I always get great care there, other than one male RN who is worthless and can't even do a bed pan trip right lol. I had to have Rosa come up and clean me up better when I was there last and he was working and had no aids there to help. Other shifts my sister who works in the ER there had some of her friends working to care for me and I got the best bath bed ever.

Well it has cooled down here and is 65 or so and windy. First day with no wind I am out for a trip to test out the chair. Have a list of things to do and super late getting my blood test done and need my one year full testing done soon. My orders run out this month and hope to get to the hospital Friday or Monday and to the doctor soon after that. I do go to the MDA doctor on the 18th of next month.

Take care and have a great day :)

Greg

My groups.

http://tech.groups.yahoo.com/group/TiggersChatPlace/

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#21019

From: Brenda <BracinKnee@...>
Date: Thu Mar 27, 2008 5:45 am
Subject: Albuterol Nebs, Confusion, Refluxing

bshanson68

Offline

Albuterol Nebs, Confusion, Refluxing

Hi everyone:

Today was a pretty short day. We slept in again and had a good start to the day. MJ is now up to 30cc/hr on J-tube feeds with no return seen. MJ felt pretty good and did have a six hour gap between nubain during the night. This afternoon, I changed the trach and MJ gave me an A+. The bivona is so much easier to change than the shiley. MJ said it was easier than her g-tube which is easy.

Dr. Fink discussed meds and bowel issues. For now, we have stopped hypertonic saline and Tobi. With Tobi, no one really remembers when we started it or how long ago it has been so we have stopped for 2 weeks. We have also switched from DuoNebs to Albuterol Nebs to see how MJ does. We are trying to eliminate all meds that slow down the bowels. We are also confusing the pharmacy, docs, nurses, etc…well actually the whole staff. Dr. Fink wanted to know why MJ was on liquid albuterol, so I explained to him about the study that was held and the potential benefits for using it. MJ can’t tolerate it now since it is in an alcohol base so Fink suggested that since MJ gets great benefit from it, to take a vial of albuterol for the neb and give it via the J-tube. RT came and asked why, and pharmacy called him to ask. Nurses also asked. It has never been done and now everyone knows about SMA and liquid albuterol.

Tonight, MJ had great plans for doing no nubain until morning, but that didn’t work. We were getting ready to get up in the sling and MJ started refluxing multiple times. Stuff was coming out her mouth and nose and she was pretty miserable. I quickly got her on her back some and sat up to stop it and we decided to forego getting up. MJ did get some in her trach but I think we got it all out. UGH!!! While rolling MJ over, her sore foot got caught on her other foot and then her ribs hurt from her massive refluxing.

Special thanks today to the Bodzo Family for dinner. It was delicious. Thanks again.

MJ’s dad wants to say, “The incredible continuous outpouring of love and support for Margaret and Brenda has been overwhelming. So many of you check in with the girls on a daily basis with notes, email, cards. letters, flowers, countless balloons and dinner every night. Words of thanks do not seem enough for these acts of kindness and support for Margaret and Brenda each and every day. Love and prayers are such powerful tools and so many of you are tapping in to these powerful forces giving Margaret and Brenda the strength and support they have needed to face the continual challenges of this very slow healing process. How fortunate the doctors, nurses and staff at Dayton Children's Hospital are to have these two women teaching them so much, not only about SMA, but also about care, kindness and support.

Thank you each and every one for your care, kindness, concern and support. I know the girls and I feel strengthened every day!

Take Good Care...Tim”

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#21018

From: denger2@...
Date: Wed Mar 26, 2008 2:23 pm
Subject: Re: House Appropriations Letter, follow up

adenger

Offline

The House version of the letter seeking funding for Muscular Dystrophy programs has been sent to the Appropriations Subcommittee. The following Representatives signed:

Collin Peterson, MN

Michael Michaud, ME

Richard Neal, MA

Chris Smith, NJ

Rush Holt, NJ

Dennis Moore, KS

Bob Etheridge, NC

Heather Wilson, NM

Raul Grijalva, AZ

Betty Sutton, OH

Jay Inslee, WA

Bill Pascrell, NJ

Doris Matsui, CA

Tom Allen, ME

Christopher Murphy, CT

John Tanner, TN

Peter King, NY

Jim Gerlach, PA

Frank Pallone, NJ

Ron Paul, TX

Jim Ramstad, MN

Ellen Tauscher, CA

Tammy Baldwin, WI

Henry Waxman, CA

Robert Andrews, NJ

George Miller, CA

Keith Ellison, MN

Vern Ehlers, MI

William Delahunt, MA

Dale Kildee, MI

Thank you to all who took time to try and secure their Representative's support.

As you may know the Senate needs a version of this same letter seeking funding. Senator Susan Collins, ME and Senator Sharrod Brown, OH will be circulating the letter. When it is finished I plan to notify all again seeking Senate support.

Brian Denger
Maine

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Reply | Forward | Messages in this Topic (26)

#21017

From: Tigger Greg <greg1960@...>
Date: Wed Mar 26, 2008 2:15 pm
Subject: Re: Hello, my new chair

tiggers2000us

Offline

Pride Mobility Quantum Q6000 <director.php?vcompid=223&fromrev=1>, this
is said to be the best chair base made, maybe it was a few people doing
review who got one of the rare bad ones. We are coming up with a ramp
and way to get it in the van if it ever breaks done, have to get me a
working cell phone again and getting the paper to use Dial a ride again
as dial a ride van is how i got my old chair and me home when it broke
down before. Got luck then and first time and broke down taking to
friend at Vons when they were on strike and they called help for me and
one of them followed me home to push my chair and me up the ramp and in
the house. 2nd time i broke down next to a pay phone and Brian came and
waited with me until dial a ride got there and it was the one time it
took them forever as they were short drivers and had to call one in.
Well going to hope for the best with this chair and i have had great
luck with the cheap Jet3 i got to use now and it's made by Pride so
maybe i will have luck with the new one.

Greg

Charles D. Rhodes wrote:
>
> What brand/model?
>
>
>
> *From:* MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] *On
> Behalf Of *Pirate Tigger
> *Sent:* Tuesday, March 25, 2008 6:15 PM
> *To:* undisclosed-recipients
> *Subject:* [MD-List] Hello, my new chair
>
>
>
> Hello, just read reviews of my new chair and some people sure had a
> bad time with this chair and most of them paid 26,000 for there
> chairs. Hoping for the best and have things to ask Dave when he comes,
> like undoing the tilt thing for grades and just drive careful like I
> always do. And keep seeing pictures of the chair with the right power
> leg lifts that would work for me easy and not the one I have on it
> now. So not happy about this now, but there have been people who had
> good luck and most of them had this chair over 15-18 months and maybe
> they fixed some of the things wrong. They better have lol.
>
>
>
> Greg
>
>
>
>
>
>    
>
> My groups.
>
> http://tech.groups.yahoo.com/group/DailySmiles/
> <http://tech.groups.yahoo.com/group/DailySmiles/>
>
> http://groups.yahoo.com/group/prayer_club/
> <http://groups.yahoo.com/group/prayer_club/>
>
> http://tech.groups.yahoo.com/group/TiggersChatPlace/
> <http://tech.groups.yahoo.com/group/TiggersChatPlace/>
>
> http://groups.yahoo.com/group/tiggerscomics/
> <http://groups.yahoo.com/group/tiggerscomics/>
>
> http://groups.yahoo.com/group/TiggersIM/
> <http://groups.yahoo.com/group/TiggersIM/>
>
>
>
>
>
>
>
>
>
>
>
> FREE Animations for your email - By IncrediMail! Click Here!
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7:17 PM
>

#21016

From: Brenda <BracinKnee@...>
Date: Wed Mar 26, 2008 5:35 am
Subject: Margaritas, Strawberry Daiquiris, and Miranda Rights

bshanson68

Offline

Margaritas, Strawberry Daiquiris, and Miranda Rights

Hi all:

Today was a quiet day which was good. I slept in until 11:30 and I woke up MJ at 12:30. Zach came by two times and was quite worried about MJ sleeping so much, but whatever. We both woke up feeling pretty good (good for MJ is mild nausea and throbbing foot pain).

Our first visitor was Zach, who wanted to talk to MJ alone. I was a little hesitant to leave the unit so he could talk, but alerted the nurses to the request so they could listen out for her. MJ was taken aback when the first question was about me not caring for her well enough. Somehow, the message given to her resident about going home last week about not feeling safe because of the campus police issues was translated into Brenda would not give good care! MJ was really upset at Zach and let him have it and told him was that really concerning was how everyone twists her words to suit their own personal needs or wants. The funny thing is, is that Erin hasn’t talked to us since Friday and now we know why she hasn’t come in during the daytime anymore…she sneaks in during early morning so we are asleep. I told MJ that it is the UnMiranda rights, “everything you don’t say will be used against you”, so beware. GRRRRR! Here, we thought she was trained but is twisting words and adding what she wants into the equation.

MJ asked the nurses if today was a doctor holiday because at 5pm, we hadn’t seen anyone. Pat said she saw Fink on the floor a few minutes ago, and guess who walked in…Dr. Fink. He has been really good and very understanding. He congratulated MJ on going 6 hrs between Nubain injections last night and said she was doing a great job. Tonight she went 4.5 hrs between and that was with getting up in her lift. MJ’s toenail feels great…however her foot hurts all the time and the spot on her toe is still numb. Dr. Fink talked to anesthesia about a nerve block for her foot, but that idea was quickly tossed out by Fink since little things tend to set MJ back about a month. We talked about her j-tube surgery and backing up issues then, and how last night MJ made multi color margaritas (in an hour, MJ had blue (lollipop) output, green (Jtube feeds) output, and purple (gentian violet) output and they all layered up. Each color had a different density, so they separated into three distinct layers). Fink asked if MJ wanted to stop feeds for 2 to 3 weeks and start over again. She said no, she is now tolerating 25cc, so no stopping now, just go slow. He asked us why we didn’t do complete bowel rest from the beginning. MJ said to ask his staff and I said, I don’t know, we asked and were denied. Since we didn’t see Dr. Carvahlo, and no orders were written, the plan was to stay at 25cc for the day and re-evaluate tomorrow. There was no green output today, only strawberry daiquiris. Tonight, MJ felt super thirsty, like a sponge. She ate a raspberry Popsicle that was magenta in color. Well, that Popsicle went in one side and out the other in 30 min. or less…so MJ told her nurse, last night was margaritas and tonight was strawberry daiquiris!!

MJ has been more junky the past two days, more yellow secretions. Last night and tonight, we have had to use one liter of oxygen bled through the vent to keep her saturations above 90. We keep trying to cough, but all it does is wake MJ up, so we add one liter and she is fine. Nothing is coughed up, so who knows…there are worse things to be addicted to.

First of all, I must say thanks to the wonderful RT staff last night and this morning for letting me sleep in and get lots of rest and keeping the breathing treatments on schedule. It helped so much. Also special thanks to everyone who sent such wonderful notes to MJ regarding Emma’s angel day. It is hard to believe that Emma became an angel 16 years ago! Thanks for all the wonderful notes that let us know that you were thinking of us for other reasons than being here. Special thanks to Jimmy and Lorraine for dinner tonight. It was delicious and MJ sends finger hugs right back to Jimmy! Thanks again!!!!

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#21015

From: "Charles D. Rhodes" <jedicharles@...>
Date: Wed Mar 26, 2008 1:26 am
Subject: RE: Hello, my new chair

jedimasterxp

Offline

What brand/model?

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Pirate Tigger
Sent: Tuesday, March 25, 2008 6:15 PM
To: undisclosed-recipients
Subject: [MD-List] Hello, my new chair

Hello, just read reviews of my new chair and some people sure had a bad time with this chair and most of them paid 26,000 for there chairs. Hoping for the best and have things to ask Dave when he comes, like undoing the tilt thing for grades and just drive careful like I always do. And keep seeing pictures of the chair with the right power leg lifts that would work for me easy and not the one I have on it now. So not happy about this now, but there have been people who had good luck and most of them had this chair over 15-18 months and maybe they fixed some of the things wrong. They better have lol.

Greg

My groups.

http://tech.groups.yahoo.com/group/TiggersChatPlace/

#21014

From: "Pirate Tigger" <greg1960@...>
Date: Wed Mar 26, 2008 1:15 am
Subject: Hello, my new chair

tiggers2000us

Offline

Greg

My groups.

http://tech.groups.yahoo.com/group/TiggersChatPlace/

#21013

From: "Marie Pichaske" <GenMedLabMom@...>
Date: Tue Mar 25, 2008 1:21 am
Subject: Re: Monday, March 24th. 5:30pm

mpichaske

Offline

Hello Greg, I sure hope you don't get whatever they are passing around over there. Think healthy thoughts! But let us know how you are doing.
Marie

On Mon, Mar 24, 2008 at 8:45 PM, Pirate Tigger <greg1960@...> wrote:

Hello all,

    Hope you had a good Easter and Monday. It's been very nice here and warm, low 80's Sunday and about the same today, but going to cool down the rest of the week some. I got out on Sunday to go to dinner with Rosa, my mom and a friend and it was a good meal, got a new kinda shrimp and it was good, just not the type I the comes with that meal I get all the time and they did not give me the Texas cheese toast that comes with the dinners there. After that, I stopped next door to the place we ate and visited my niece working at the hotel there and got to meet her boss and a few others working there and visited with her for 3 hours. Rosa was planning on coming home to rest after that before going to Mikes, but called her soon as she got home and she had to go work over there, unplanned to work for over 4 hours and when I did not get home she was worrying about me and sent Brian looking for me and we saw him drive by the hotel , I called Rosa's cell and told her I was ok and I guess Brian was waiting to let me in the door the whole time and did not get much of a day off. It was a good visit.

   I got some good sleep last night and woke up not as tired and for once did not have to raise the bed all the way up to get my pain and breathing better. Not going to sleep good tonight I bet as feels like I am getting whatever got the people Rosa takes care of sick and Rosa sounds like she is getting it also. It's not the flu, but some kind of bug and they went to there out of town doctor today as they did not want to wait for the doctor to be in town on Wed. as the one lady is old and not in the best of health and he told them it's in there lungs now and one of her daughters who is a nurse has to come and give them shots each day now. So hope I do not get it as I was in the ER 2 times for the same thing in Dec. 1999 and real sick and I can remember the chest and lung pains for it,not fun at all.

   JUst did my daily plan today and watched TV, no movies today and no DVD's to copy and we never did get mail today so not sure when it ran today. We are having big chicken breasts tonight and left over potato dish and vegs. I will have mine with hot sauce.

   Hope you all have a great Tuesday :)

Take care.

Greg

My groups.

http://tech.groups.yahoo.com/group/DailySmiles/

http://groups.yahoo.com/group/prayer_club/

http://tech.groups.yahoo.com/group/TiggersChatPlace/

http://groups.yahoo.com/group/tiggerscomics/

http://groups.yahoo.com/group/TiggersIM/

--
Marie
GenMed Lab Mom
Blog 31 and 32 March 14, 2008
http://genmedlabmom.blogspot.com

#21012

From: Brenda <BracinKnee@...>
Date: Tue Mar 25, 2008 4:22 am
Subject: maladjusted, psychologists, and George Lopez

bshanson68

Offline

Maladjusted, Psychologists, and George Lopez

Hi everyone

Another day and another hundreds of dollars in the Hotel IMCU or Camp Pain in Foot/Gut/Arm (fill in the blank here).

Dr. Carvahlo came by first. Relayed the previous night’s issues with food and said we shouldn’t have let MJ eat CinnaSticks. I told him that MJ was mad at him since she “ate” food and it made her sick and that it is physically impossible to chew mashed potatoes and spit them out. MJ decided she didn’t want to eat that bad anymore and have to feel that sick, so she was going to stick to the gum, lollipops, ice chips and Listerine breath strips. The plan for today was to go up to 25cc and stay all day. We would take this day by day and work through this on MJ’s time schedule only. MJ’s belly is in charge now.

Next, Erin came and said that Dr. Fink ordered a consult with a psychologist because she is “maladjusted to her trach” and to help transition her back to being disabled and different on campus. I just kind of looked at Erin and laughed and said whatever. Zack, the psychologist showed up soon afterwards and talked to MJ for about 5 min before he realized that she was “well adjusted” to her disability and trach and everything. Dr. Fink took MJ’s message about being sent home right now as “I won’t get good care at home and that she isn’t adjusted to the trach”….not sure how he jumped there, but that was the basic message. MJ talked about her concerns and her trust issues with Fink and Royce and told Zack why she didn’t trust them and felt that they didn’t have her best interests at heart.

Zack relayed the message but not directly. He said “from what I am hearing” so it wasn’t a direct quote but a feeling he had. Dr. Fink came in later and was on board with all our wishes. MJ is trying to cut back on Nubain, trying tonight by taking out one dose if possible, and Fink is going to explore other viable options for MJ’s foot for pain relief. Dr. Carvahlo will be involved in all decisions regarding feeding and that the top two concerns right now are pain relief and feeds. We are going to hold off on the care conference if things continue, but at the first instance of Pulmo not following the plan, a conference will be called along with Zack. I am finishing this up early since George Lopez is done with its week long marathon on Nick at Night. MJ has watched it all last week getting so good belly laughs in and enjoying herself greatly.

Special thanks to all the email cards today. I think we are up to at least 2 packs of paper for all of them. They are so fun to read in the morning. Special thanks to the Kuester Family for buying dinner for us despite just returning back from the hospital last night. It was delicious and greatly appreciated. Big hugs to all!!

Planning your summer road trip? Check out AOL Travel Guides.

#21011

From: "Pirate Tigger" <greg1960@...>
Date: Tue Mar 25, 2008 12:45 am
Subject: Monday, March 24th. 5:30pm

tiggers2000us

Offline

Hello all,

Hope you had a good Easter and Monday. It's been very nice here and warm, low 80's Sunday and about the same today, but going to cool down the rest of the week some. I got out on Sunday to go to dinner with Rosa, my mom and a friend and it was a good meal, got a new kinda shrimp and it was good, just not the type I the comes with that meal I get all the time and they did not give me the Texas cheese toast that comes with the dinners there. After that, I stopped next door to the place we ate and visited my niece working at the hotel there and got to meet her boss and a few others working there and visited with her for 3 hours. Rosa was planning on coming home to rest after that before going to Mikes, but called her soon as she got home and she had to go work over there, unplanned to work for over 4 hours and when I did not get home she was worrying about me and sent Brian looking for me and we saw him drive by the hotel , I called Rosa's cell and told her I was ok and I guess Brian was waiting to let me in the door the whole time and did not get much of a day off. It was a good visit.

I got some good sleep last night and woke up not as tired and for once did not have to raise the bed all the way up to get my pain and breathing better. Not going to sleep good tonight I bet as feels like I am getting whatever got the people Rosa takes care of sick and Rosa sounds like she is getting it also. It's not the flu, but some kind of bug and they went to there out of town doctor today as they did not want to wait for the doctor to be in town on Wed. as the one lady is old and not in the best of health and he told them it's in there lungs now and one of her daughters who is a nurse has to come and give them shots each day now. So hope I do not get it as I was in the ER 2 times for the same thing in Dec. 1999 and real sick and I can remember the chest and lung pains for it,not fun at all.

JUst did my daily plan today and watched TV, no movies today and no DVD's to copy and we never did get mail today so not sure when it ran today. We are having big chicken breasts tonight and left over potato dish and vegs. I will have mine with hot sauce.

Hope you all have a great Tuesday :)

Take care.

Greg

My groups.

http://tech.groups.yahoo.com/group/TiggersChatPlace/

#21010

From: "Manuel Matos" <macmatos@...>
Date: Mon Mar 24, 2008 8:55 pm
Subject: Fw: Impossível não reencaminhar!

mis2matos

Offline

----- Original Message -----
From: "adriano figueiredo" <adrianojof@...>
Sent: Monday, March 24, 2008 8:43 PM
Subject: Fwd: Impossível não reencaminhar!


>
>

#21009

From: "Marie Pichaske" <GenMedLabMom@...>
Date: Sat Mar 22, 2008 1:02 am
Subject: Re: Good Friday, March 21st 5pm

mpichaske

Offline

A happy Easter to you, Greg - stay healthy!

Marie

On 3/21/08, Pirate Tigger <greg1960@...> wrote:

Hello all,

Hope you had a good Good Friday and have a great Easter weekend. Was a very nice day here and too warm for me now as we are running the oven today for the boneless skinless chicken breasts. Had a hard time getting to sleep as was waiting for our friend across the street at him mom's to get done with the brakes on the van and it took him forever as the new parts did not work and he had to rebuild parts on both the rear wheels and redid the stuff in the rear in, looked like it had not been done since the van was new in 72. He was done a bit after 5am when Brian went over to bleed the brakes. Took him 13 hours including trips to get more tools and parts and stuff and he only wanted 60.00 for the job. So that is done now. I also was having a hard time sleep and ended up having to wake Rosa get to get me in the bath room at about 4am and I just stayed up. My breathing has not been too bad, just super tired right now and could g to bed now easy. Rosa works half a day again and I think this all they are working her over there anymore, should have had her stay as they were both sick and could use the help, hoping Rosa will not get sick and get me sick also.

   Just watched my TV shows and news and played my game once. No movies today and we did not watch Lost yet. Last nights dinner was ok, but did not set well with me and I am doing better tonight just having one soda and the rest of the bottle I had about done the other day. Tonight we are having the chicken and not sure what sides I will order, rice or potato's I am sure and a veg mix. Rosa called Dave again and on my goodness he called me back this time lol and set up to come up here Wed. The 26th in the afternoon, same time Rosa has to take Mike to get his teeth fitted and molded for his new fake teeth, the nursing home he was staying in before lost his teeth and sent the wrong ones and they got them to pay to get them done here in town. So Brain will drop them off and get back and wait with me as he will need to get me in the new power chair and I know the feet rest will not work out and going to get Dave to see that and get that fixed as he was the one who fitting me for this new chair and I can't see using the foot rest for a long time as it is now and will have to strap my feet to the rest it looks like. It just needs a wide plate bolted on top and it would work out. I might have to get our friend to make one for me.

   Well not much planned for the weekend, hoping Rosa gets paid on Saturday, a day late and hoping the ATM still has money.

    Hope you all have a great fun Easter weekend. :)

Take care

Greg

My groups.

http://tech.groups.yahoo.com/group/DailySmiles/

http://groups.yahoo.com/group/prayer_club/

http://tech.groups.yahoo.com/group/TiggersChatPlace/

http://groups.yahoo.com/group/tiggerscomics/

http://groups.yahoo.com/group/TiggersIM/

--
Marie
GenMed Lab Mom
Blog 31 and 32 March 14, 2008
http://genmedlabmom.blogspot.com

#21008

From: Tigger Greg <greg1960@...>
Date: Sat Mar 22, 2008 1:13 am
Subject: Re: Marie Good Morning, Friday March 14th. TGIF

tiggers2000us

Offline

Some of my emails here go to spam file and have to wait for a ok, lol. I
think we will go out to eat for my late b-day next weekend as i get my
new chair ready to go Wed. now and if Brian wants to go with us we will
go some place close or load me in the van with my non power chair and go
to somewhere else on the other side of town.
Hope you have a great Easter weekend. :)
*Hugs*
Greg

Marie Pichaske wrote:
>
> Hello Greg - believe it or not I just got this email today.  That's
> what I thought - I like it a lot better that way :)
>
> Marie
>
> On Sat, Mar 15, 2008 at 10:17 PM, Tigger Greg <greg1960@...
> <mailto:greg1960@...>> wrote:
>
>     I messed that up big time. I mean it is a make up dinner out for my
>     birthday as the weather was bad when we had my birthday party on Jan.
>     6th, my birthday is Jan. 7th. I forgot to edit my letter there lol. :)
>     Have a great Sunday :)
>     *hugs*
>     Greg
>
>     Marie Pichaske wrote:
>     > Hey Tigger - Greg
>     >
>     > When is your birthday and why is it your last birthday dinner
>     out? Do
>     > you mean because you didn't get to go out for your last birthday?
>     >
>     > Marie
>     >
>     >
>     > On 3/14/08, *Pirate Tigger* <greg1960@...
>     <mailto:greg1960%40verizon.net>
>     > <mailto:greg1960@... <mailto:greg1960%40verizon.net>>>
>     wrote:
>     >
>     > Good Morning all,
>     > Hope you had a good nights sleep and doing good now and
>     > have a great Friday and weekend. It's 7am and in the 50's already
>     > and we did not need heat in the house this morning again, I did
>     > use my little heater in the bath room and enjoyed it. Had a ok
>     > night sleep after Rosa had gone to bed, she had her beer and was
>     > in a good mood and enjoying her night. My breathing and pain were
>     > ok sleeping and my lungs and chest hurt now, but not too bad yet.
>     > Watching movies so far today and not sure if Brian is out here
>     > with my today or not after he takes Rosa to job #2, she is over at
>     > Mikes now, job #3 feeding him and getting him set up for the day.
>     > Looks like we are going to have my friend across the street do our
>     > brakes on the van this weekend I think. He is the brother of my
>     > best friend and is our handyman now days lol and now Rosa likes
>     > him and would not mind having him as a boyfriend or something like
>     > that lol.
>     > Last nights dinner was ok, the dog and I had the baked fish ,
>     > potato salad, pasta salad and peas. Not sure what we are having
>     > tonight, but my guess is chicken. We have chicken 2 times a week,
>     > fish 2 times a week, 1 night beef, sandwich night, and burger
>     > night, that's the meal plan so far and a Mexican night or pizza
>     > night in there once in awhile.
>     > Just planing on doing stuff on line and watching shows and
>     > DVD's today and catch upon emails and get stuff sent out I do
>     > every day. One more day closer to getting my new power chair :)
>     > Do not think we are doing anything this weekend as the weather is
>     > not forecasted to be too good. Mom is going out to dinner with a
>     > friend tonight and we were to go together,but not looking like it
>     > this time. We are going out to eat when I get my new chair and it
>     > works out that my mom and anyone we can get to go with us can go
>     > with, as it will be my last birthday out to eat dinner
>     > Hope you all have a great day and weekend :)
>     > Take care :)
>     > Greg
>     >
>     >
>     >    
>     > My groups.
>     > http://tech.groups.yahoo.com/group/DailySmiles/
>     <http://tech.groups.yahoo.com/group/DailySmiles/>
>     > <http://tech.groups.yahoo.com/group/DailySmiles/
>     <http://tech.groups.yahoo.com/group/DailySmiles/>>
>     > http://groups.yahoo.com/group/prayer_club/
>     <http://groups.yahoo.com/group/prayer_club/>
>     > <http://groups.yahoo.com/group/prayer_club/
>     <http://groups.yahoo.com/group/prayer_club/>>
>     > http://tech.groups.yahoo.com/group/TiggersChatPlace/
>     <http://tech.groups.yahoo.com/group/TiggersChatPlace/>
>     > <http://tech.groups.yahoo.com/group/TiggersChatPlace/
>     <http://tech.groups.yahoo.com/group/TiggersChatPlace/>>
>     > http://groups.yahoo.com/group/tiggerscomics/
>     <http://groups.yahoo.com/group/tiggerscomics/>
>     > <http://groups.yahoo.com/group/tiggerscomics/
>     <http://groups.yahoo.com/group/tiggerscomics/>>
>     > http://groups.yahoo.com/group/TiggersIM/
>     <http://groups.yahoo.com/group/TiggersIM/>
>     > <http://groups.yahoo.com/group/TiggersIM/
>     <http://groups.yahoo.com/group/TiggersIM/>>
>     >
>     >
>     >
>     >
>     >
>     >
>     >
>     > FREE Animations for your email - By IncrediMail! Click Here!
>     > <http://www.incredimail.com/index.asp?id=101218
>     <http://www.incredimail.com/index.asp?id=101218>>
>     >
>     >
>     >
>     >
>     > --
>     > Marie
>     > GenMed Lab Mom
>     > Blog Twenty-six March 9, 2008
>     > http://genmedlabmom.blogspot.com
>     <http://genmedlabmom.blogspot.com>
>     <http://genmedlabmom.blogspot.com <http://genmedlabmom.blogspot.com>>
>     >
>     > ----------------------------------------------------------
>     >
>     > No virus found in this incoming message.
>     > Checked by AVG.
>     > Version: 7.5.519 / Virus Database: 269.21.7/1329 - Release Date:
>     3/14/2008 12:33 PM
>     >
>
>
>
>
> --
> Marie
> GenMed Lab Mom
> Blog 31 and 32 March 14, 2008
> http://genmedlabmom.blogspot.com <http://genmedlabmom.blogspot.com>
>
> ------------------------------------------------------------------------
>
> No virus found in this incoming message.
> Checked by AVG.
> Version: 7.5.519 / Virus Database: 269.21.8/1338 - Release Date: 3/21/2008
5:52 PM
>

Reply | Forward | Messages in this Topic (5)

#21007

From: "Marie Pichaske" <GenMedLabMom@...>
Date: Sun Mar 23, 2008 2:15 am
Subject: Re: Saturday, March 22nd, 6pm

mpichaske

Offline

Greg - I'm glad you beat the game and have friends to go to dinner with. I just had a chicken salad at Chili's myself.

The great grand baby - is this your great niece or nephew?

Happy Easter and thank you for giving me a glimpse at your day.
Marie

On Sat, Mar 22, 2008 at 9:26 PM, Pirate Tigger <greg1960@...> wrote:

Hello all,

   Hope you had a good day and enjoying the weekend best you can. It's very nice here and was low 80's and sunny. Will be cooling down mid next week. Some places in LA will be 90-93 for Easter. We should be nice here and not too hot. Not doing so hot this afternoon, just can't get in a real good mood, and just tired now. Had a good nights sleep and did not have a hard time breathing to too much pain. In pain now and dinner is being served now, steak, mash potato's I think and vegs. Did not do anything today and mom is just getting here for dinner. We are going out to eat for Easter at Sizzlers , if they are open, but I think they are and it's close to here and I can get there in my old chair ok as Brian does not want to work on Sundays so does not want to take me in the non power chair. My friend Wayne wants to go also.

   Dinner was very good, was a thin cut steak, red potato's mashed with cheese and garlic and I had peas. Mom had lot so pictures to show of the great grand son she just got, some are very good. Just had emails, send out my comic's and stuff and played one game and for the first time ever I beat it.

    Well hope you all have a great Easter :)

Take care.

Greg

My groups.

http://tech.groups.yahoo.com/group/DailySmiles/

http://groups.yahoo.com/group/prayer_club/

http://tech.groups.yahoo.com/group/TiggersChatPlace/

http://groups.yahoo.com/group/tiggerscomics/

http://groups.yahoo.com/group/TiggersIM/

--
Marie
GenMed Lab Mom
Blog 31 and 32 March 14, 2008
http://genmedlabmom.blogspot.com

#21006

From: "Marie Pichaske" <GenMedLabMom@...>
Date: Sat Mar 22, 2008 12:59 am
Subject: Re: need info

mpichaske

Offline

don't know myself - what is the context?

Marie

On 3/20/08, neo30143 <neo30143@...> wrote:

can anyone tell me what m-3 is?

--
Marie
GenMed Lab Mom
Blog 31 and 32 March 14, 2008
http://genmedlabmom.blogspot.com

Reply | Forward | Messages in this Topic (7)

#21005

From: "Marie Pichaske" <GenMedLabMom@...>
Date: Mon Mar 24, 2008 2:04 pm
Subject: Re: Sexy Toes, Mashed potatoes, and CinnaSticks

mpichaske

Offline

thanks again for the update Brenda - 8 weeks - you guys should have your own tv show or something!
marie

On Mon, Mar 24, 2008 at 2:41 AM, Brenda <BracinKnee@...> wrote:

Sexy Toes, Mashed potatoes, and CinnaSticks

Hi everyone:

Today is day 56, 8 weeks have gone by. Who knew coming in for influenza would lead to this marathon stay. We continue to be blessed by all the outpouring of love and prayers.

Started off the day with a visit from Dr. Bhatt, who has now been hit by the happy hammer, who had some ideas about the GI issues MJ is having, which Dr. Carvahlo agreed with completely. He finally joined the happy bunch who understands MJ and her needs. It seems that the happy hammer is contagious, which we are thankful. Bhatt realized that MJ is dehydrated because we had been going down on TPN while the J feeds were going up. So on Friday when we went back down, the TPN didn't go back up and they also weren't taking into account the amount of bile/food/etc coming out of the gtube. For awhile, she was losing 150 to 200cc an hour. So that was fixed by increasing the TPN back up. Regarding GI issues, MJ is tolerating 20cc/hr through the J-tube so today, once MJ woke up, we increased the feeds by 2cc. We are trying to trick the gut to think we are at the same rate and sneak it by. We went to 22cc and then after dinner went to 24cc. MJ got very bloated after that but it was due to CinnaSticks we think. But tonight she got bloated again so we backed down to 22cc so that she can sleep. We will try again tomorrow.

Dr. Carvahlo wants MJ to eat 2 to 3 times a day, but not eat! Are you confused yet? He wants MJ to eat food that she likes but to spit it out. He suggested macaroni and cheese, cheese, mashed potatoes, and French fries�but have you ever chewed those and tried to successfully spit it out? Even more difficult when you can't spit�MJ told Carvahlo that she wants him to chew mashed potatoes and try to spit it out without swallowing some. Tonight MJ ate a CinnaStick and didn't swallow but she got sick and threw up a lot. Now we aren't sure if was the increase in rate or not.

MJ's toe = the toenail looks better and this morning the shiny plastic skin was lessened but it swelled back up later in the day and she also has a red spot on her toe that is numb. Not really sure what is up with that. The morning resident said it was fine but tonight, we had Dr. Baker or Happy Hammer, who said that she has a lot of tightness in her foot and was really confused by the red numb spot on her toe but said she had sexy toes, LOL! He also got really concerned when he walked in and said, "Are your lips blue?" MJ stuck out her purple tongue and he started laughing. Thank goodness he joined "our team" and plays nice now. MJ has now trained 4 of the residents about her now.

Other than that, MJ's lungs are pretty much the same, still has atelectasis, still coughing up yellow stuff but breathing much better. The residents have quit asking since she is definitely on the other side, where ever that may be.

Special thanks for the Easter greeting MJ received today. Also special thanks to the Stants family for dinner. I enjoyed it and MJ and I both agree that Steak and Shake would have been better, LOL!

Brenda
caregiver to MJ, 20, SMA type 1

http://www.our-sma-angels.com/Margaret/ - MJ's website
http://www.our-sma-angels.com/b4sma - MJ's organization

"Far away in the sunshine are my highest aspirations.
I may not reach them, but I can look up and see their beauty,
believe in them, and try to follow where they lead."
~Louisa May Alcott~

Planning your summer road trip? Check out AOL Travel Guides.

--
Marie
GenMed Lab Mom
Blog 31 and 32 March 14, 2008
http://genmedlabmom.blogspot.com

#21004

From: Brenda <BracinKnee@...>
Date: Mon Mar 24, 2008 6:41 am
Subject: Sexy Toes, Mashed potatoes, and CinnaSticks

bshanson68

Offline

Sexy Toes, Mashed potatoes, and CinnaSticks

Hi everyone:

Today is day 56, 8 weeks have gone by. Who knew coming in for influenza would lead to this marathon stay. We continue to be blessed by all the outpouring of love and prayers.

Started off the day with a visit from Dr. Bhatt, who has now been hit by the happy hammer, who had some ideas about the GI issues MJ is having, which Dr. Carvahlo agreed with completely. He finally joined the happy bunch who understands MJ and her needs. It seems that the happy hammer is contagious, which we are thankful. Bhatt realized that MJ is dehydrated because we had been going down on TPN while the J feeds were going up. So on Friday when we went back down, the TPN didn’t go back up and they also weren’t taking into account the amount of bile/food/etc coming out of the gtube. For awhile, she was losing 150 to 200cc an hour. So that was fixed by increasing the TPN back up. Regarding GI issues, MJ is tolerating 20cc/hr through the J-tube so today, once MJ woke up, we increased the feeds by 2cc. We are trying to trick the gut to think we are at the same rate and sneak it by. We went to 22cc and then after dinner went to 24cc. MJ got very bloated after that but it was due to CinnaSticks we think. But tonight she got bloated again so we backed down to 22cc so that she can sleep. We will try again tomorrow.

Dr. Carvahlo wants MJ to eat 2 to 3 times a day, but not eat! Are you confused yet? He wants MJ to eat food that she likes but to spit it out. He suggested macaroni and cheese, cheese, mashed potatoes, and French fries…but have you ever chewed those and tried to successfully spit it out? Even more difficult when you can’t spit…MJ told Carvahlo that she wants him to chew mashed potatoes and try to spit it out without swallowing some. Tonight MJ ate a CinnaStick and didn’t swallow but she got sick and threw up a lot. Now we aren’t sure if was the increase in rate or not.

MJ’s toe = the toenail looks better and this morning the shiny plastic skin was lessened but it swelled back up later in the day and she also has a red spot on her toe that is numb. Not really sure what is up with that. The morning resident said it was fine but tonight, we had Dr. Baker or Happy Hammer, who said that she has a lot of tightness in her foot and was really confused by the red numb spot on her toe but said she had sexy toes, LOL! He also got really concerned when he walked in and said, “Are your lips blue?” MJ stuck out her purple tongue and he started laughing. Thank goodness he joined “our team” and plays nice now. MJ has now trained 4 of the residents about her now.

Other than that, MJ’s lungs are pretty much the same, still has atelectasis, still coughing up yellow stuff but breathing much better. The residents have quit asking since she is definitely on the other side, where ever that may be.

Special thanks for the Easter greeting MJ received today. Also special thanks to the Stants family for dinner. I enjoyed it and MJ and I both agree that Steak and Shake would have been better, LOL!

Planning your summer road trip? Check out AOL Travel Guides.

#21003

From: Brenda <BracinKnee@...>
Date: Sun Mar 23, 2008 6:02 am
Subject: resident vs surgeon, GI Issues, not talking

bshanson68

Offline

Hello:

A pretty quiet day here today for once but started off on the wrong foot. We got woke up at 8am by 2 surgery residents. One introduced the other as the surgeon. MJ said to them, “if you are going to lie, at least turn your badge over so it doesn’t say RESIDENT!!” The resident said her foot is normal despite the plastic shiny look. UGH, idiots!!! What a waste of a consult.

Next, the day nurse came in and said that Dr. Fink came in and ordered food to be increased by 5 again, despite yesterday’s orders to stay at 20 until Monday. I refused and let MJ sleep in. So after MJ woke up, the nurse gave us Fink’s orders (who did not grace us with his presence today). He comes in, writes orders without seeing the kid, and leaves. He said up in chair, increase food and decide if we wanted to go home or move rooms without consulting with us. MJ was fit to be tied. She said she would get up in her chair if she got double the dose of pain meds and besides surgery said to elevate the foot. Never did see him, kind of makes you mad…writes orders without seeing how the patient is doing. His ego is just too much and is really becoming a true Fink or a PITA. We did see Carvahlo walking at the end of the hall and asked to see him. Unfortunately we missed him but he is going to stop in and see us tomorrow. Our plan is to ask for a care conference next week with GI, nephrology and pulmonary teams to see when we are going to start working together. If possible, we are going to see if we can be placed on GI rotation instead of pulmonary since right now the issue is GI related. We are fed up with pulmonary undermining all orders by GI and no one actually talking to each other and it harming MJ in the meantime!

We shall see what transpires tomorrow. Thanks to Ally and family for the two angels. They are sitting on the shelf watching over MJ as we know that Emma is here watching too. Special thanks today to the Fisher family for dinner tonight. I finally got to eat at midnight and it was good.

I must add in here that we aren’t sure how we will ever be able to thank everyone for all the kindness we have received during out two month hospital stay so far. Our spirits are constantly uplifted every day by every card, gift, email, phone call, food or whatever. Everything is greatly appreciated. Happy Easter everyone: http://www.americangreetings.com/ecards/view.pd?i=463765438&m=6924&rr=y&source=ag999

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#21002

From: "Pirate Tigger" <greg1960@...>
Date: Sun Mar 23, 2008 1:26 am
Subject: Saturday, March 22nd, 6pm

tiggers2000us

Offline

Hello all,

Hope you had a good day and enjoying the weekend best you can. It's very nice here and was low 80's and sunny. Will be cooling down mid next week. Some places in LA will be 90-93 for Easter. We should be nice here and not too hot. Not doing so hot this afternoon, just can't get in a real good mood, and just tired now. Had a good nights sleep and did not have a hard time breathing to too much pain. In pain now and dinner is being served now, steak, mash potato's I think and vegs. Did not do anything today and mom is just getting here for dinner. We are going out to eat for Easter at Sizzlers , if they are open, but I think they are and it's close to here and I can get there in my old chair ok as Brian does not want to work on Sundays so does not want to take me in the non power chair. My friend Wayne wants to go also.

Dinner was very good, was a thin cut steak, red potato's mashed with cheese and garlic and I had peas. Mom had lot so pictures to show of the great grand son she just got, some are very good. Just had emails, send out my comic's and stuff and played one game and for the first time ever I beat it.

Well hope you all have a great Easter :)

Take care.

Greg

My groups.

http://tech.groups.yahoo.com/group/TiggersChatPlace/

#21001

From: "J.P." <redmaple01ca@...>
Date: Sat Mar 22, 2008 11:23 pm
Subject: Re: need info

redmaple01ca

Offline

Maybe it is myotonic muscular dystrophy 3

I know there is 1 and 2, not sure about 3

we need more information to be more precise.

cheers, J.P.


--- In MD-List@yahoogroups.com, "neo30143" <neo30143@...> wrote:
>
> can anyone tell me what m-3 is?
>

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#21000

From: "Pirate Tigger" <greg1960@...>
Date: Sat Mar 22, 2008 12:21 am
Subject: Good Friday, March 21st 5pm

tiggers2000us

Offline

Hello all,

Hope you had a good Good Friday and have a great Easter weekend. Was a very nice day here and too warm for me now as we are running the oven today for the boneless skinless chicken breasts. Had a hard time getting to sleep as was waiting for our friend across the street at him mom's to get done with the brakes on the van and it took him forever as the new parts did not work and he had to rebuild parts on both the rear wheels and redid the stuff in the rear in, looked like it had not been done since the van was new in 72. He was done a bit after 5am when Brian went over to bleed the brakes. Took him 13 hours including trips to get more tools and parts and stuff and he only wanted 60.00 for the job. So that is done now. I also was having a hard time sleep and ended up having to wake Rosa get to get me in the bath room at about 4am and I just stayed up. My breathing has not been too bad, just super tired right now and could g to bed now easy. Rosa works half a day again and I think this all they are working her over there anymore, should have had her stay as they were both sick and could use the help, hoping Rosa will not get sick and get me sick also.

Just watched my TV shows and news and played my game once. No movies today and we did not watch Lost yet. Last nights dinner was ok, but did not set well with me and I am doing better tonight just having one soda and the rest of the bottle I had about done the other day. Tonight we are having the chicken and not sure what sides I will order, rice or potato's I am sure and a veg mix. Rosa called Dave again and on my goodness he called me back this time lol and set up to come up here Wed. The 26th in the afternoon, same time Rosa has to take Mike to get his teeth fitted and molded for his new fake teeth, the nursing home he was staying in before lost his teeth and sent the wrong ones and they got them to pay to get them done here in town. So Brain will drop them off and get back and wait with me as he will need to get me in the new power chair and I know the feet rest will not work out and going to get Dave to see that and get that fixed as he was the one who fitting me for this new chair and I can't see using the foot rest for a long time as it is now and will have to strap my feet to the rest it looks like. It just needs a wide plate bolted on top and it would work out. I might have to get our friend to make one for me.

Well not much planned for the weekend, hoping Rosa gets paid on Saturday, a day late and hoping the ATM still has money.

Hope you all have a great fun Easter weekend. :)

Take care

Greg

My groups.

http://tech.groups.yahoo.com/group/TiggersChatPlace/