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Thursday, November 20, 2008 10:33 PM CST
Hi all:
Sorry for the lack of updates, but school was kicking my butt, big time. The good news is that I AM DONE!!!! I don’t have class until next year; hee hee!! My next class is January 5th. So, I am done and boy, am I glad. School, with a trach, with an infection, and with IBS and reflux the whole quarter is very tiring. I have only got one grade back so far, and that is an A in Medical Aspects of Rehabilitation.
So, backing up, to where I left off from my last update…my presentation in my Rehab Class went well, my group got a 97 out of 100. We were all very excited about that! My presentation and paper in sociology went great and we got a 93 out of 100 which was the highest in the class. For that teacher, a 93, is like an A+++, because she believes that no one is perfect, so I am extremely happy with that.
Tuesday was my only day of finals. I had a final at 1pm and then one at 5:45pm. Before I headed to my test, I thought I broke my collarbone. I was sitting in my chair and my arm made a horrible noise and I had pain radiating down my arm for the whole day but yesterday morning it was fine, only hurt if Brenda touched it so we left it alone.
Regarding my breathing, it is okay. I still have some major plugging issues where I can’t breathe but they aren’t as hard to get out, so I haven’t passed out lately. We haven’t done another test yet to see if the infection is gone but we will soon. I saw my GP today and it was funny. Some docs, when they listen to my lungs, tell me that they hear wheezes, weasels, cats purring, or whatever they come up with. Today, I had quite a few “coos”. I said it sounds so peaceful and dove like. LOL! So I still have crap in there but hopefully I will get it out soon. I am finally getting my IPV machine on Sunday. It was ordered in April and I finally am going to get it. I hope that it can loosen my thick sticky crap and get it out so I feel better.
On another note, I will more than likely be doing my volunteer hours for class at CCK, but not there at the facility. My buddy Ed has created a position for me so I can volunteer but not be a liability (not his phrase) with me being disabled. I will let everyone know more as details become confirmed. I have to get the idea approved by Dr. Carol, my professor (I really do not like her; she is the one who hates that I say that I’m disabled!!). So please pray that she likes the idea and will approve it or I’m back at square one.
We did hit blanket 600 last week and are off on our way toward 700, much slower than last month thank goodness. My calendar sale is going well, we are over 100 calendars sold at this point. Please remember, if you need a great gift for someone for the holidays, please consider buying a SMA Calendar (http://www.cafepress.com/b4sma/1826918 ). While you are there, please check out the Attitude and Inspirational Sections as we have added more designs to the store. They make great holiday gifts too. (http://www.cafepress.com/b4sma/827865 ).
I’ve been lax at sharing pictures lately too. You can see my recent pictures at http://b4sma.shutterfly.com/5824 oldest to newest. Enjoy! If everyone is healthy, I’ll share some pictures after Thanksgiving, we’ll be celebrating on Friday.
Please continue to pray for all of those that are under the weather or have lost family members. This flu season is hitting hard, healthy people too, so be careful everyone. Big hugs and prayers for everyone.
Love,
MJ
Quote of the week:
Whoever I am, or whatever I am doing, some kind of excellence is within my reach. ~ John W. Gardner ~
Wednesday, November 5, 2008 5:44 PM CST
Hi everyone:
I am almost done with class for this quarter, only 2 days left of class for the quarter. Tuesday is a university holiday, so I have class tomorrow and then have a week off until next Thursday (major benefit of having class two days a week).
So, what have I been up to the past 10 days? Homework, homework and homework. That crunch is hitting and I have my 20 page paper due next Thursday, a 4 page paper due next Saturday and a 6 page paper due on the 18th, plus a test in 3 of my 4 classes left. Why must teachers put off all papers to the end of the quarter anyway?
I am almost done with my Cipro antibiotic. Did see Dr. Goyal on Monday and sounded good but now am coughing up tons of huge plugs again, let us hope it is the end of it. It is a never ending battle with my s. maltophilia infection, so who knows if it is really gone or still trying to kick my butt! Time will tell. I do see Dr. F on the 20th so we can figure it out then. The good thing is that I am no longer having those huge plugs that block my trach and make me turn bluish.
My presentation last Friday regarding disability and health care was a bomb. The conference was sponsored by Midmark (they make accessible health care exam tables) and they had 5 people there. That was the extent of the audience. Can you believe it, there were 5 people from MidMark, 2 from disability services, the lady from the Counsel of the Blind and Brenda and I. I was very disappointed since my whole presentation was talking to med students, nurses, and physicians on communicating with disabled people. No one from the medical field even knew about it, so that was frustrating. Maybe next year they will advertise and offer free food so people will show up!!!
October was an extremely busy month for B4SMA. We sent out 26 blankets in one month which is sad in the fact that the vast majority were newly diagnosed kids. Let us hope that a cure can come soon since more and more kids are being diagnosed. I’m not sure how many remember or even know. I was diagnosed early back before there was a test along with my sister Emma. Back then, in 1988, SMA was a rare disease and I did not really know of anyone else for many years. Today, 20 years later, doctors are still saying the same thing, that SMA is a rare disease and to take your kid home and love them until they die. It is sad that despite their being a blood test now and can be tested prenatally, having 3 specific medicines that slow the progression of SMA down, and all the research being done, most doctors – specialists especially, will tell you nothing except that your kid will die right away. Isn’t it amazing, that with SMA being a rare disease, we are 4 blankets short of 600 blankets in less than 5 years.
Enough about that, if you were wondering, yes I did vote this year, my first time ever for a president. All I will say about that, as to not start any big debates, is that I am glad that I will be able to live wherever I want to live. Rumor has it that last night on campus were some major parties, I guess I slept through them and that the police were called out many times.
My calendar fundraiser is going pretty well. I have sold 50 calendars thus far. Not too bad for the beginning of November. I hope to get lots more to make this an awesome fundraiser. (http://www.cafepress.com/b4sma/1826918 ). Remember, they make awesome holiday gifts. Also please continue to pray for all of my SMA Friends who are under the weather or are facing current challenges ( http://www.our-sma-angels.com/b4sma/prayers.htm )
Until after finals probably, love ya lots,
MJ
Quote of the week: Always continue the climb, it is possible for you to do whatever you choose, if you first get to know who you are and are willing to work with a power that is greater than ourselves to do it. ~Oprah~
Sunday, October 26, 2008 8:00 PM CDT
Hello everyone
I have survived another week of classes and am slowing getting closer to the end of the quarter. I am so ready for a break and a health rest.
So on the health front, my IBS has finally stopped spasming out and so has the reflux! My lung infection is once again stenotrophomonas maltophilia, the same thing I have had off and on since April. It has been quite dreadful at times this week with the big huge plugs. Tuesday night I almost passed out due to a plug and it scared me to no end. I have had a plugging episode almost every night since them but we are getting better at catching them earlier and getting rid of them. I did change my G-tube and my J-tube changed Saturday, since it was time. Went great and I was glad.
Classes are going okay. My group project for Sociology that I was having major trouble with has turned around and we are doing great. Our bibliography reviews were due Tuesday and we got them back Thursday and our group did excellent. Our paper isn’t due until the last day of class and I have written 2 pages (out of my 7) so far. My group project in Rehab class is done and ready to present on Thursday, have to go make copies of the handout on Monday but it is done. I also started writing my Counseling paper which is due Nov 4th or anytime before the end of the quarter…hmm, I hope to get it done early enough and turned in and out of the way.
Today was the OKI FSMA 2nd annual Halloween Party. I had everyone trying to guess what I was going to be. My hints were dark, bright, and out of this world. Ever heard of the Milkyway??? Well I don't drink milk, I drink YooHoo...so with inspiration from Kim, an hours worth of sticking from Brenda, I give you the YooHoo Way Galaxy...Just discovered in a night sky near you. You can check my caring bridge page for a picture or the link to my photo album for pictures. http://b4sma.shutterfly.com/5637 I am working on a montage too, so stay tuned for that!
Tomorrow I have to meet with Jeff at ODS (Office of Disability Services) to go over my presentation for Friday and find out more details. I am nervous about speaking but I will do fine (just hope my throat doesn’t close during it!). I am also sending out 3 more blankets, making 16 blankets sent out this month. I hate that we keep having to send out so many but I will not stop until a cure is found. Another one of my friends from Connecticut with SMA passed away last week. Kyle was 10 years old and has had a couple of rough years. Just too many kids who die too early and there are way too many kids that are sick or still sick from last week. http://www.our-sma-angels.com/b4sma/prayers.htm I am just dreading this winter because it started off way to early this year.
Quote of the Day:
"True friendship is like sound health; the value of it is seldom known until it be lost." - Charles Caleb Colton
Sunday, October 19, 2008 10:53 PM CDT
Hi everyone:
Another week down and only 4 weeks to go! It has been a long week but I made it. The weekend is almost over and I am almost done with my Rehab Project (due 10/30), done with my Bibliography (7 pages, due 10/21), and have more ideas for my speech to the Medical conference I have to speak at (10/31).
I registered for Winter Classes on Tuesday. I will be taking (starting in January) 18 credit hours. I am taking Rehabilitation Resources (the class I had to drop last year while in the hospital), Rehabilitation Casework, Sociology of Deviant Behavior, Sex, Drugs and HIV, and Free Speech: Past and Present. I have class every day except Friday’s!!! How exciting! On Monday, I only have one class from 4 to 7pm – I hope I can wake up in time for it. Tuesday and Thursday’s I have two classes from 12:20 to 2:00pm and then 4:10 until 5:50pm. Wednesday is a split day. Normally I will only have class from 4 to 7pm, but on three of the Wednesday’s I will also have a class from 11am until 2pm. So my earliest class will be the 11am until 2pm. Not too bad since this past weekend, I have been waking up or getting woken up at 1pm! OOPS, guess I’m tired.
My health this past week has been, okay I guess. I did call the pulmo doc to ask about starting an antibiotic after aspirating my day glow, Charlie Brown pumpkin medicine. He wanted a sputum sample and boy oh boy did I give him one. Woke up Wednesday morning and did a cough session and almost filled up the whole sterile suction container. They asked and I delivered. Of course, due to much confusion, I didn’t get to start my antibiotic until yesterday (luckily I have Zithromax at home and used that until the Cipro came in).
Other than all that, last week I sent out 7 blankets, one of our weekly records. We have sent out 10 so far this month and already have another one ready to go out this week. In B4SMA news, we are sad to say that one of our kids passed away yesterday, she was only 9 months old. There are still many sick kids who have SMA out there this week. The flu is making a bigger showing so please be safe and get a flu shot. If you want to visit me over the holidays, you must have your flu shot before hand (BIG HINT TO MY FAMILY!!!)
This week I have 2 tests and a pop quiz in my Communication class. Next Sunday is the FSMA OKI annual Halloween skating party. I bet you can’t wait to see my Halloween costume…just think dark! LOL!
Until next week, hugs and prayers to all!
MJ
Quote of the week: Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has. ~Margaret Meade
Saturday, October 11, 2008 9:09 PM CDT
Hi everyone:
Another update about me and another week has gone by. Time is flying by but with sad news this week. There are currently almost 30 kids on my prayer page (http://our-sma-angels.com/b4sma/prayers.htm ). One SMA kid passed away and 2 family friends also passed away. All three will be missed and will never be forgotten.
On my front, things have been better, but things could be worse. I went to see Dr. C, my GI, for my 3 month follow-up on my reflux and IBS. For the past two weeks, my IBS and reflux have been pretty miserable. Dr. C had some ideas how to help and the first plan was to start me on an antibiotic, Xifaxan, to help kill all the bacteria in GI tract and then to reintroduce lots of probiotics back in to keep good bacteria in my gut to help stop the IBS. The worst part of that idea what that I had to quit eating orally. NPO, nothing by mouth for two whole weeks. I currently can still eat orally at times and still drink liquids, but never a lot, but going 2 weeks seemed like true torture. The Xifaxan liquid is a bright orange and when we saw it, Brenda exclaimed, “It’s the Great Pumpkin, Charlie Brown!” It really was a strange color. Anyway, I started Thursday morning with the meds and with the nothing by mouth. Normally I have a drink of something in the morning which helps my throat to stop from closing (how, who knows why) but could not have anything at all. About 20 minutes after my meds, I began to reflux. Normally, my reflux is under control, but the past two weeks has had me refluxing multiple times a day but nothing coming up into my throat. Well, the Xifaxan instantly started causing more reflux but major heartburn with it…not good. As the day progressed, I started refluxing higher and higher up…into my mouth, gross, I tell you, just gross. Well, Brenda called the doctor about giving me liquids, which he okayed at 4pm because my blood sugar kept dropping. By the time class got out at 6:30pm, Brenda had about had it (as had I). I was having muscle twitches, due to the lack of sodium and potassium in my diet, was refluxing almost 30 to 60 times an hour, and was just plain miserable. We headed home and as I laid down, I had a big reflux episode, and up and out came the meds, still…it was that bright orange pumpkin color. Unfortunately, some of it went into my lungs and we suctioned some out. My sats and heart rate sure showed it so Brenda called the GI office and said we stopped the antibiotic and let me eat orally, to get my electrolytes back in line and asked what to do next. They never called back, so I personally took that as a sign to eat and enjoy my weekend.
Thursday I did get my two tests back from the previous week. I got an A in Sociology and an A in Medical Aspects of Rehab. I was very happy about that. The Rehab class was pretty easy and missed a few questions, but was one of the top scorers. Yippee! My Sociology group is working a little better after I sent a rude/sarcastic note to the boys about how we were going to split up the work and do it MY WAY! LOL! My Rehab group is wonderful. I like my group and we work well together.
Friday, my cousin Kate and her mom, Aunt Maryanne came up for dinner. We went to Max and Erma’s for dinner, since neither of them had heard of it before. We had a good time catching up on everyone’s lives and just hanging out and having fun. If you go here, you can see pictures of our fun times (not many pictures, but lots of fun!). http://b4sma.shutterfly.com/5483
Sorry it is late in coming, but I had to finish my 6 to 8 page pager based on a 3min and 50 second clip of a movie…the movie clip was too short, so I rented the movie to help. It is done and turned in on time (due at 11pm). Now onto next week’s work; a test on Tuesday in Counseling and a 4 page paper due next Saturday. I will wait till tomorrow to start that, as it is time to do another breathing treatment.
Hugs and prayers to all that are under the weather. It is way too early to have this many kids sick and in the hospital already.
Love, MJ
Quote of the week:
In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. ~Albert Schweitzer
Friday, October 3, 2008 12:27 AM CDT
Hi everyone:
Another week has come and gone and I am not feeling my best. I am still under the weather, made worse by the weather. Monday was a pretty good day, work wise, got a lot of stuff done, but feeling blah! My digestion was a little better, we had went down to just Tolerex and water for a few days and am working back to full strength. Monday night, at 11pm, I was going to lay down and get ready for bed when all of a sudden the lights went out, came back after a couple minutes and go out again. Unfortunately, after the second time, they didn’t come back. My bed completely deflated and I started choking and threw a plug and was having trouble breathing. Since we had no power, my cough machine won’t work, but we learned a secret from a friend years ago who had a trach and that was how to cough with the suction. Thank goodness for that and I was able to get my plug out. Brenda heard my resident assistant in the hallway, and asked him what was going on, to which he and several others all had no clue. We called the campus police a few times who knew nothing and finally fed up, called DP &L, who really didn’t know what was going on and finally gave us a timeline of two to four hours before power was restored. We decided to find a hotel, which was harder than expected. Across from campus there are many hotels which could give us a discount, but none of them had a room that was accessible for me. Yes, they had accessible rooms, but if you have ever noticed, there is no room that is ever truly accessible. I use a lift to get in and out of my chair/bed and 99% of hotels have beds on boxes so I can’t get out of my chair to sleep. Brenda finally found a hotel around 1am and we quickly loaded up, called my RA and had them help load the van and left. The hotel was good but the fold out couch was horrible. I think I slept maybe an hour all night, refluxed a lot, and was overall miserable. We were back at our apartment Tuesday by noon. The power went out due to lightening, which we never knew we had a thunderstorm, by the way. Tuesday, is one of my busy days where I have two classes, but after no sleep, too much refluxing, and feeling horrible, I laid down to take a nap. I fell asleep at 12:30 and Brenda woke me up at 5:30, missing both classes. I ate and went back to sleep at midnight and didn’t wake up until 1pm on Wednesday. I am still tired a lot of the time and having big desats at night but not coughing much up. Not sure what is going on, but hopefully will come to an answer soon.
Anyway, I had two tests on Thursday. I think I did okay, but who really knows. I finished my autobiography for Communications class. My six words are “Defying Death, Finding Freedom, Creating Comfort”. If you want a fun and easy read, go get the book, “Not Quite What I Was Planning”. It is a book of other people’s 6 word autobiography. I read most of the book last Friday and it helped me write my own. It was quite fun to try to figure out what to pick and how it reflected your life so far.
Tomorrow we are off to see GJ and pick up my meds (and go to Yutzy’s). I am not sure how long I will last since I’ve been so tired, but we shall see. The rest of the weekend will be spent doing homework. Next week, I have an 8 to 10 page paper due and the following week I have a test and a 4 page paper due. I can’t believe that 4 weeks have already gone by, so that makes it that I only have 12 days left of class. I also register for winter quarter in 10 days. On another note, I have been asked to be on a disability panel on October 31st for a medical conference held here at WSU. I have to talk about how the medical professionals need to learn how to be more disability friendly. I will find out more on Friday when I have a meeting about it.
My SMA Calendar sale is going pretty well. I have sold almost 50 calendars so far. If you want to see the montage, buy a calendar or merchandise, you can find out everything at: http://www.cafepress.com/b4sma/1826918
Please continue to pray for all of my friends who are under the weather and for my cousin Sarah who had surgery this past week. http://our-sma-angels.com/b4sma/prayers.htm you can sign the guestbook to offer your prayers or thoughts and ask for prayers for someone else.
The T-shirt I'm wearing in the attached picture is designed by the fabulous Bill Brown. Thanks Bill!
Big hugs to all:
MJ
Quote of the week:
“Risk more than others think is safe… Care more than others think is wise… Dream more than others think is practical… Expect more than others think is possible…” Author unknown
Sunday, September 28, 2008 7:48 PM CDT
14 Classes, 1 Infection, & 6 Words
Hi everyone:
Another week and another update, can you believe it. I am trying to stay up-to date, but I am busy.
So, I did get another V-Cue mattress back. The bad news is that there are very few V-Cue mattresses left in the country, so once they are gone, they are gone. Now , I have to start shopping for something similar from another company. The temporary mattress was okay for me but Brenda hated it. It took Brenda a lot longer to get me ready for anything because I just sank into the mattress. I did sleep better so that was helpful.
Monday I went and saw a new family doctor. I was impressed and liked her (still not as great as Dr. Proskin). I told her why I picked her and what I expected from her and she was okay with it. We talked about all of my meds that I currently take and she was familiar with most of them and agreed with me taking them. I had an EKG done and it was normal and we will do them yearly to make sure all is right with my heart (if you are wondering, don’t worry, I have no heart issues, but this is why we are doing EKG’s: http://www.fightsma.org/blog/sma-science-research/bach-studies-autonomic-dysfunction-in-sma-patients.html ). My doctor also gave me my yearly flu shot. It is early, but the CDC said that the flu is starting early so I am taken care of already. I just hope this year’s flu shot is more effective than last years.
Classes are going okay. I have two tests this week, so I stayed home all weekend. My group for Sociology is becoming a pain (I think you can guess where). I am trying to work with them, but they meet alone and they tell me what to do, I am working on it. Frustrating to say the least. Rehab class is going good. So far it seems pretty straight forward and review. My group in rehab is going good. We work well together. I have a test in here Thursday, so will let you know how that goes. (My other test is in Sociology). My Counseling class is okay. We did move classrooms so we are a little more spread out and that is better. It is funny, after 2 hours of lecture, the professor shows a movie and we can stay if we want to or leave – I leave. The movie isn’t on the tests, so why bother! LOL! My online communication class is okay. The class is fine, but there are so many issues going on with getting it set up that it drives you crazy. I have my autobiography done, but now have to write the 4 pages that go with the 6 words. I’ll share next week.
Guess what, I finally got the phone call to go get fitted for my manual chair…three years later. My chair is in and almost ready. Whoo hooo! I had a three hour fitting Friday. It should be done this week, if the guy can make a tray this week. If, not it will be here soon enough. I loved the seat cushion, it felt like I was sitting on a cloud. Here are a few pictures - http://b4sma.shutterfly.com/5450
Unfortunately, I am not feeling great. Friday, I was really off and having trouble digesting food and was extremely congested. I am digesting food now, but am just feeling crappy. I have a sinus infection and who knows what else. I am knocking on wood, really hard now, but it almost feels like last January when I had the flu. I am so glad for my trach right now. It is blocking all the sinus crap from draining into my lungs – it just heads to my stomach. I have a dentist appointment tomorrow morning so it should be interesting. I have been resting and doing homework and working on websites.
Please say prayers for all my friends who are hospitalized, sick, or under the weather. (http://our-sma-angels.com/b4sma/prayers.htm ). This year’s cold and flu season is starting way too early this year. Don’t forget to get your flu shot and please, don=E 2t share your germs with others.
Love,
MJ
Quote of the week:
There is no medicine like hope, no incentive so great, and no tonics so powerful as expectation of something better tomorrow. -O. Swett Marden
Saturday, September 20, 2008 11:07 PM CDT
Hi everyone:
Are you amazed, it is Saturday and already a new update? Not much happened during the week, just homework and group projects to start.
I met my group for my Sociology project on Tuesday. I have a bunch of articles to go through and hopefully found enough information to write my portion of the paper. We have to do a 20 page paper that is due in November, but in October we have to have 20 professional references and write a one page summary of each article. There are 3 of us, so that is like 7 articles a piece. It isn’t too bad, just trying to get my group to work. My communications class is still going as planned. I have done 2 weeks worth and am going to do next weeks work on Monday. There is a quiz that I have to take by next Saturday, but I am going to try to get ahead in that class. The following week, I have to write my autobiography in 6 words. (http://www.smithmag.net/sixwords/). It looks like fun but what a challenge it will be. How do you sum up your life in 6 words? My Medical Aspects of Rehab class is going okay. Most of it is review for me so far. It goes over each body system and associated disorders, so far we have done the Nervous System with nothing much new. We have a group project in this class too. We have to give a presentation on a specific condition (no, we couldn’t choose our own) and my group picked end stage renal disease (not my idea). My group is pretty cool. We all get along so that is good. My counseling class is okay…the first 90 minutes is a lecture so that part of class is pretty boring then the rest is a movie and a group activity. So as of today, I only have 16 more days left of class!!
Friday, Hill Rom did come over to replace my mattress, but only got the bed box, not a mattress. They misunderstood the message that my MATTRESS went up in smoke, not the box. SIGH! They took the bed away Friday and left me with nothing! They promised me a new mattress but it didn’t come until today. My cousin Kate came yesterday. She now goes to college in Cincinnati and we haven’t seen each other a lot in the past few years. We went out to dinner at Qdoba’s and laughed and laughed and had a great time while staying up way too late. This morning, the bed finally arrived, it is not the one that broke but a cheap make of an air mattress. I’ll let you know how it works and if I sleep better. We also we got TV back tonight! It’s amazing how much I missed it just as background noise. Kate left this afternoon. (Thanks for coming and can’t wait to hang out again!) Click here to see pictures: http://b4sma.shutterfly.com/5247 and for people who can't view the pictures, there are a few above.
That is about it for now. Please send major prayers for my friends who are in the hospital already. Dani has influenza (yes, it is true, flu season already), Stella has a bad cold , Autumn who just got home after getting a G-tube, and Julia who also got home from the hospital too. Also prayers for anyone else who is under the weather and those who are still waiting to get power back after last weekend’s storm.
Love
MJ
Today’s quote:
You don't choose your family. They are God's gift to you, as you are to them. ~Desmond Tutu
Tuesday, September 16, 2008 8:18 AM CDT
Hi everyone:
Please, no one faint, so I hope you are/were sitting. Sorry for the lack of updates. Time keeps escaping me and here I am a few weeks late with updates, so I will try to explain all that has been going on since my trip back from New York.
My trip home was uneventful, lots of rain, but we made it in pretty good time. I had time before classes to start to go visit GJ and get good food at Yutzy’s and the Airport (that good food from Ohio). Ran errands and Brenda got to clean up around the apartment and empty boxes and suitcases. I did finally get my turning mattress fixed by completely replacing it. On the 4th the van got picked up to get serviced. It was supposed to be done Friday or Saturday at the latest, but does anything ever go as planned. I think the van resembles me and my hospital stay…it went in for a simple service and did not return home until Monday. We ended up renting a mini-van for Sunday and Monday, so we could get out of the apartment (talk about stir crazy). The mini-van we rented was a side-entry with no passenger front seat. It took me about 15 to 20 minutes to maneuver into the front seat but I loved it. I want a big van with the front seat out. I loved to feel the wind in my hair and Brenda could reach me easily. I went to see Dr. Goyal (pulmonologist) before classes started and got started on Bactrim for my stenotrophomonas maltophilia again (which I have had since my exit from the hospital in April). I also made an appointment with a family doctor to help manage my meds and all that other stuff. I have an appointment next week.
I have 9 weeks left of classes. I only have classes on Tuesdays and Thursdays from 12:20 until 7pm. Two long days but having three extra days off makes up for it (so does having a four day weekend). So I can officially say that I only have 18 days left of class, LOL! In Sociology class, I have a 20 page paper and 3 tests, Rehab class I have 3 tests and a group project, Counseling class has 2 tests and an optional paper. I am also taking a Communications class that is online. We have lots of writing to do, at least 2 papers a week. I have already done three for last week. It will keep me busy but nothing too stressing. Right now, I am just waiting on my books as a text file so I can read independently, instead of having Brenda help me.
So, this past weekend, we went c amping. It is a new camp in Kentucky called the Center for Courageous Kids. I didn’t want to go at first because of my trach, but since summer traveling went so well, I decided to go at the last moment. It was a SMA Family Weekend (Friday to Sunday). There were 8 other SMA families there, and I knew everyone. We left campus at 11am and had to stop for lunch otherwise we would have arrived too early (we forgot about the time zone change). Friday night I went outside my comfort zone and helped Ed lead the camp cheer. We stayed up way to late talking and then headed to bed. Unfortunately, I didn’t get to sleep right away. My new turning mattress had other ideas. When Brenda is getting me ready for bed, we firm the mattress (air mattress) and then when done, you turn the firm function off and it deflates some so it is super comfortable. Well, after getting ready, the mattress refused to deflate some. If Brenda turned it off and then back on, it would not inflate at all unless she hit firm. Grrrr!! After Brenda started getting my meds, she asked if I smelt something, which I didn’t but then I noticed some smoke. Yup, my bed overheated and started smoking. After quickly turning the mattress off, I asked Brenda if that would be a “medical emergency, non medical emergency, or a crap, call 911 emergency”!!! We didn’t call anyone because by that time it was close to 2am. After removing the smokin’ mattress and making a regular mattress for me to sleep on and get no where near comfortable but ready to go to bed, it was 3am. We were to be at the first activity at 7:30, but missed it but did get to the activities by 8:30 (very tired but awake). Saturday was totally amazing! I can’t really describe the whole weekend besides amazing. I truly enjoyed the weekend and felt totally refreshed and full of many emotions. I really enjoyed the camp staff who took me in and treated me as a peer and did not “baby me” like some adults do. I was included in their jokes and started my own with them (and Queen Nate!). Special thanks to Lindsay for painting with me, Caitlin for doing my nails and dying my hair purple, Ben for being totally awesome and genuine, Chris for talking to me like an equal, Charlotte for telling me more about Child Life, Queen Nate for letting me pick on you non stop and complimenting me when you knew I nee ded it, Erin for hanging out with me, and Margaret for keeping me company while Brenda packed and for removing my finger nail polish. Yesterday, camp was supposed to end at 1 but the weather kicked us out early. Hurricane Ike decided to blow us out of there early. Not much rain, but wind that was wicked. Gusts up to 70 mph. I slept part of the way home and missed the downed power line on the interstate and the new roadway made by weaving in and out and around semi’s to get to an area where cars could get under the power line.
We made it home at 6pm to find no power and shingles all over the place. The wind was not as strong as it was driving home, but it looked like a war zone with branches and shingles all over the place. Thankfully, the power came on right away and we were fine. We did lose our cable TV connection around 9pm and rumor has it, that maybe by the weekend, we should have it back. I’m just glad that we have power and internet and that it isn’t the premier week on television. So, there is my not so short update. I promise to try to keep better track of what I am doing and up to in the future. Hopefully, things=2 0will quiet down (I doubt it, but I am hopeful) in the near future!
I probably won’t have the montage done until next weekend but in the meantime, here is a link to the 500 pictures that Brenda took (I had to yell at her a couple times to remind her that I wanted plenty of pictures --- she took me literally and went a bit overboard, but I love them all!). Pictures - http://share.shutterfly.com/action/welcome?sid=0QcNWjZs4ZMnIQ
Until later, have a great week and prayers for my friends who are under the weather and all of the families who felt the wrath of Ike as he made his way through Texas and beyond.
Love and blanket hugs
MJ
Quote of the weekend:
“Life is not a problem to be solved but a reality to be experienced.” – Soren Kiekegaard
Friday, August 22, 2008 6:36 PM CDT
Camping, Fried Face, Coffee, and Arm Issues
Hi everyone:
Sorry for the lack of updates this summer. Lack of internet sure is a bummer. I can’t get on dial-up and can’t even get a wireless connection anywhere. Right now I’m enjoying dinner and free WiFi at Panera (I think I’m addicted to the frozen Caramel coffee). I cannot wait to go home so I can go online and get some website work done. I will also be working on doing the 2009 SMA Calendar, so I will let you know when it is up and ready.
I have been so busy that I have gotten up almost every day and have kept busy. I have seen the doctor many times, trying to get an answer to my arm pain. I have seen the neurologist, who didn’t think it was nerve pain, so I was put on a lidocaine patch, which made my pain much worse. So then it was Tegratol, which made me cross-eyed and unable to focus at all. Now it is Lyrica. I am hoping that I have no horrible side effects from this one. I am also having a lot of blood when suctioning , so we did a trach culture to see if there is something hiding in there.
Dr. Bach was good. We had a good visit and it was worth it to get him up to date with everything that happened this past year. We talked about trachs and NIV. I’m just glad that I did make the decision and am happy with it but am so glad that with Dr. Bach’s help, I was able to go 14 years using NIV.
I have also had a trial with a Dynavox System. I really enjoyed using it and can’t wait to get my own. Early mornings and late evenings are hard on speaking so the Dynavox will be a great help during those times and others.
Camp Harkness was awesome. I had a great time and it was great to see everyone again and spend a week of just having fun! I got burnt, of course, despite sunscreen, but am feeling better now. Mostly just my face! All week, we went shopping, ate out, hung out at the beach, met new friends, and had a multi-c olored bonfire. The weather was great and not too hot at all. I enjoyed the colored bonfire and hanging out with friends at the beach and the mashed potatoes. Once I get access I will work on sending a montage, but for now, you will just have to deal with this http://www.facebook.com/album.php?aid=54374&l=6f632&id=769097805
Sunday, July 24th is SMA Day at Shea Stadium. The New York chapter of FSMA is hosting the day and I am so excited to finally meet Dylan C. I can’t wait to meet his friends too and make new friends.
Now I’m asking for your help on somethings…
Please take a minute (literally) to nominate "Cure SMA" for the $2.5M American Express Members Project. If successful, the project funds would be used to further research towards taking that last critical step in finding a treatment and/or cure for SMA.
The "Cure SMA" project is currently 15th out of over a thousand projects, but it needs more support by September 1st to get to the next round.
YOU DON'T HAVE TO BE AN AMERICAN EXPRESS CARDHOLDER OR MEMBER TO NOMINATE THE PROJECT.
You can nominate the "Cure SMA" project by clicking on the following link - http://www.membersproject.com/project/view/ZTSYI1
Also, there is currently a petition going around started by Bill & Victoria, mom and dad to Gwendolyn, to help get legislation passed to accelerate to research and study for a cure for this disease. It can be found at http://www.petitiontocuresma.com/
Researchers are very close to finding a cure, but at the moment it is unlikely they will find one in time to help kids living today. If this legislation is passed, there is hope that a cure will come sooner, in time to save thousands of other children who are fighting, or will be fighting this disease in the future.
I am asking that you please take the few minutes needed to sign this petition. It is very important that we put pressure on our representatives to fight for this legislation, and the more people who sign, the better. The goal was 10,000, but was reached so quickly that it has been increased to 50,000! It is already making a DIFFERENCE in Congress, but they need more support! Please SIGN the petition then PASS this petition on to ANYONE you think will help by signing. I will also be personally contacting my local representatives to support this cause.
I thank you from the bottom of my heart for your help. It means so much to me to be able to do something to help these children who can't help themselves. Please let me know if you have any further questions.
MJ
Wednesday, July 9, 2008 11:12 PM CDT
Classes almost over, Brainfingers II, almost vacation time
Hi everyone,
Just thought I would send a quick update to let you know what I’ve been up to lately. I have been feeling better since I started on the 3x/week antibiotic treatment. I am able to be off my humidifier more during the day without getting huge plugs. I am feeling so much better than I am starting to do sprints off my ventilator. Yesterday was my first day and I was off my vent for 23 minutes and never went below 97. I am also getting a Passy-Muir Valve next week to make trials easier. I hope it works well so I can at least do transfers without my vent attached.
I am doing pretty well on my next fundraiser project. I have gotten 80 families so far (last year I had almost 100). I am pretty happy with that but would love to get more kids and adults to feature on it. It makes a great gift for families and is a great way to increase awareness about SMA. I'm doing the calendar again to raise money for 2 SMA organizations (www. marshallsmiles. com and www. smasupport. com). Please email me for more details if you would like to be included.
Let’s see, I had my second Abnormal Psychology test Monday. Not sure what my grade is since there were questions on it that did not have to do with what we were studying, so the professor is recalculating our grades. I cannot believe that I will be done with classes next Thursday already. I also took my first Forensic Psychology test but have not heard anything back yet and we are supposed to get our next test questions tomorrow. Oh, well!!
On the 4th of July, we went to GJ’s to celebrate Pete’s birthday. I cannot believe that Pete is 14 already. I remember the days when he would ride on my footplates with Zach on the back of my chair. If you would like to see our party, I did make a montage and here it is: http://www.our-sma-angels.com/Margaret/Videos/petes_14th_birthday.htm
Tuesday, I was able to go try Brainfingers again. I was able to play Guitar Hero, Brainfingers style. It was pretty fun, but they need more modern music. I wasn’t as good this time, we just couldn’t get the sensitivity just right but I had fun. Here is the montage for Brainfingers: http://www.our-sma-angels.com/Margaret/Videos/brainfingers_part_ii.htm
Next week, when classes are out, Brenda’s mom and aunt are driving out here to vacation here in Ohio with us for a week. We are very excited and cannot wait. Only a week and a day more!! After they leave, I am going to New York where I will be busy. I am seeing Dr. Bach, visiting family and friends, going camping, going to a Mets game and whatever else I can come up with. Of course, going to New York means sporadic internet service (sigh!). That is the worst part of going home, no computer or limited computer. So, if you don’t hear from me, I’m not ignoring you, I probably cannot get online.
I will do an update before I go home. I go see Dr. Carvahlo on the 29th before we leave on August 4th, so maybe you will get 2 updates if I am not too busy. Big hugs to all!
MJ
Quote of the week:
Nearly all men can stand adversity, but if you want to test a man's character, give him power. Abraham Lincoln
Tuesday, July 1, 2008 6:38 PM CDT
Hi Everyone
I wasn’t planning on updating so soon but I couldn’t resist after the day I had. Let’s back up though…yesterday I had my appointment with the pulmonologist that Jeff, director of Disability Services, recommended. He, Dr. Goyal, is a great addition to my medical team. He didn’t question any of medications, equipment, or settings. I am really looking forward to working with him on perfecting my health…well as “perfect” as things can get. LOL
I’m up to my eyeballs in reading but I don’t mind if it means I’ll be done with psychology in 3 weeks and 3 days. I got my first exam back in Abnormal Psychology, I got an A! Woohoo! I got my first exam assigned in Forensic Psychology, it’s due Monday. Needless to say, I’m less than thrilled with the topics we can choose from but oh well. I also have another Abnormal Psychology test on Monday. Guess I won’t be partying much this weekend. L
Now for today’s excitement! I had lunch with my friend Angle. Angie is also a Rehabilitation Services major and currently working on her practicum. She invited me to come see what she was working on with my other friend, Sara. So I said that I would come after another meeting. Anyway, I got to see Sara using Brainfingers. Brainfingers is a mouse that is controlled with facial tension, eye movement, and brain waves. J, who is helping Angie with her practicum, offered to let me try it. Wow!!! What an experience! I thought that it would require a great deal of muscle tension for me to activate, boy was I wrong. The slightest twitch of my eyes or a muscle (I’m not up to the brain wave control, yet) and I was shooting around the computer screen. Brenda took a couple videos of me “playing” with Brainfingers, check it out if you are interested. http://www.onetruemedia.com/shared?p=6478c079b53871da9521a7&skin_id=1603&pid=624&utm_source=otm&utm_medium=text_url
It’s currently very expensive ($2,250) but they are working on a new, more sensitive, version that is supposed to cheaper. I’m hoping to get the opportunity to play with it more. It is definitely a great device for anyone with limited mobility.
That is all for now!
MJ
Thursday, June 26, 2008 8:37 PM CDT
Urgent Care, OI, Pain, & Friends
Well, it's already been a long week and it's only Thursday. I’m ok and not in the hospital so don’t worry too much. ;) Geez, where do you I begin, I guess that the beginning is good.
Monday was a good day. I had class and came home…pretty uneventful until it was time for bed. Brenda was undressing me and rolled me over. My arm got stuck underneath me and we heard a loud pop. We checked it out and it didn’t really hurt or look bad so didn’t think too much about it.
I woke up Tuesday in a bit of pain in my arm. For some reason, my forearm hurt and my upper arm hurt – where I hurt it last time. Went to class and was uncomfortable. I didn’t want to get it X-rayed, so we just went home after going to WalMart to get more antibiotics. I am over my infection from before as my secretions cleared up last week but I started again with green with my nose over the weekend and started choking on stuff draining into my airway. So, I got started on Zithromax again, but we are doing long-term antibiotics. That means, I am going to do Zithromax on Monday’s, Wednesday’s and Friday’s. I get the weekends off for good behavior again. Tuesday night I studied and studied and then studied some more!! LOL!!!
Wednesday started off full of pain. Brenda called the doctor to see if he would write for an X-Ray for my arm. I had a feeling that it probably wasn’t broken like last time, but we wanted to get it checked out just in case. I also went to take my first test in Abnormal Psychology, which wasn’t too bad except my teacher forgot how to count, LOL, so the questions were all numbered wrong so instead of 85 questions we had 89. The test is only worth 80 points so the extra 9 questions are all bonus!!! We came home after my test and waited for the doctor to call back. Around 2’ish, Brenda called the doctor and asked again, they just never called back to let me know what the doctor said, but basically, NO! They said to go to Urgent Care which didn’t open until 5pm. We called around and decided to wait and go at 5pm…what a long day. We arrived at Urgent Care at 5:10 and there was already a 2 hr wait. YIKES! Anyway, Brenda checked me in while I went to visit with one of my favorite PICU nurses, who was in the hallway. Brenda asked for a room to “hide” from the germs and they were checking for us. We stood in the hallway to avoid germs and a nurse came out, all stressed out. Because of my diagnosis I was basically a liability so I couldn’t stay in Urgent Care and had to go directly to the Emergency Room, do not pass go, blah, blah, blah. Shanna was still there and so I had quite the enterage, heading to the ER. LOL! It is sort of funny now, looking at the situation. Brenda explained that I might have broken my arm, since my bones are weak….so the nurse assumed that I have OI (osteogenesis imperfecta) and a trach at age 10! Yes, they pulled up my file, saw that I was born in 1988 and wrote down that I was 10 years old. Oh well, it actually turned out better, so I was given a jump ahead of all the people in Urgent Care and saw a doctor right away. I went for an X-Ray and waited for the results. The doctor came back after 15 minutes and said that my old fracture was still shown (what old fracture) but nothing looked new. Of course, I asked that question….what old fracture??? The doctor told me from the last injury. Hmmm, after all those dang tests that I had last January to March of 2007, no one could come up with a reason why my arm hurt so much only to find out NOW, that yes, I did fracture my arm. GRRRRRRRRRRRRRR! The compared my current X-Ray to the old one from January 07 and saw the old fracture and said that at this time there was no change. I am supposed to go back next week if it is still bothering me. I was discharged at 8pm more angry than hurting. I did get a prescription for Tylenol with Codeine. Brenda and I opened up my CD that has X-rays from my hospital stay and a couple of chest pics showed my arm, and guess what, you could see the old fracture on the X-rays.
Anyway, I slept okay using the new meds and got up for class this morning. I was so excited since after class I was going to meet one of my new buddies, Veronica, who is from Montana. They were driving through Ohio after being in Boston and NYC, on their way to Kansas City and back to Montana. I had a wonderful time with Veronica and her family. We ate out and talked and talked. I had a great time, thanks guys, for taking time out of your schedule to stop and visit me! Here are pictures from our quick visit: http://www1.snapfish.com/share/p=440261214523739493/l=395047719/g=5758299/cobrandOid=1000131/otsc=SYE/otsi=SALB (they are at the bottom).
Tomorrow is another no class Friday!! I only have 3 weeks left of class! I am so excited. 12 classes left and I’m done with 2 classes. I can’t believe that I am almost done already. It has been a hard 2 weeks, but wow, it goes fast. Oh, last quarter’s grades were 2 A’s and 2 C’s. I am very happy that I got a C in Mental Health (the one with the horrible teacher). I still never got comments or an official grade/comments about my BioEthics paper, but am assuming I got an A! I also turned in my paper from Winter Quarter for my Simulated Society class and got an A, so my F became an A. That was a shock to see an “F” on my report card. I still have 2 F’s on there until they process my request to drop the classes that didn’t get processed yet.
I have been working on the 2009 SMA Calendar. This is my third year doing it and was a little disappointed in last years’ results but decided to do it again. I sell them on my cafepress B4SMA store. If you want to participate again this year, please email me a picture or that you are interested or need more information. Pictures aren’t due until the beginning of September, but let me know.
I think that is it for now. Sorry it was so long between updates, but I’ve been swamped with reading. Tomorrow we are going to go visit grandma and pick up some meds at the pharmacy there and visiting Yutzy’s. Until next time, hugs and prayers for those that need some! Oh, I lost my MJ update list (AOL ate it). If you want updates sent directly to you and you didn’t get this, please let me know and I will add you back. This time I made a back up file.
MJ
Quote of the week:
“I wanna be there when your world is crashing down...I wanna be there when they tell you lies...and when you're feeling like you don't belong. Gonna be your friend. Gonna be there 'till the end.” – Unknown -
Saturday, June 14, 2008 5:04 PM CDT
Hi everyone:
Hope everyone is doing as well as can be expected. Our prayers are with all the families who have children who are under the weather and to all the families who are experiencing the horrible weather and flooding in the Midwest. Our thoughts and prayers are with everyone.
So, I am done with Spring Quarter. I made it through it, barely, but I survived! So far I have only officially gotten one grade back but am pretty darn sure what another grade is. My cognition and learning class I got a C which I am happy with. This is the class where no one would let me borrow their notes while I was in the hospital, so I bombed the first test. Obviously, based on the set curve in the class, not many people do a lot of learning. This is one of my graduate level classes, so I am happy with a C. The class that I am pretty sure of is Pharmacology. I got a 289 out of 300 on my final so with the four tests in the class, I got a 95 percent, so I am pretty sure I got an A, although it isn’t up and official yet.
Monday morning, bright and early, I start summer session. Last summer I took 3 classes but they were all online, so I didn’t actually have to go to class, but this summer, I actually have to go. My abnormal psychology class starts at 10:25 and goes until 12:05 Monday to Thursday. I also have Forensic Psychology which is online, so I am excited about that. I do have my books but not on audio files yet. Hopefully it will be an easy 5 weeks with not too much homework, but I shall see.
Today and tomorrow, I am taking it easy and not doing a whole lot, resting up and just hanging out. My lung infection seems to be clearing up. I only cough up yellow and white colors now, my rainbow is fading away. I go see the new pulmonologist in two weeks, so I hope I really like him and he is great and will be a great addition to my medical team.
Well that is all for this week. I have spent much of the past two weeks making old montages of pictures I had saved and also photo editing pictures. Here is a link to the folder of edited pictures I have done. http://www1.snapfish.com/share/p=700141213477036867/l=394830758/g=5758299/cobrandOid=1000131/otsc=SYE/otsi=SALB It is quite fun to edit the pictures. Until next week, take care everyone.
MJ
Quote of the week:
“In the depths of winter I finally learned there was in me an invincible summer. “ ~Albert Camus~
Saturday, June 7, 2008 9:02 PM CDT
Sorry I didn't post this sooner! I'm only 3 days late...
Hi all:
Don’t worry, I’m still here, I haven’t blown away or floated away either! Let’s see, where to start!
I did not go to GJ’s over Memorial Day for the whole time, just went for the BBQ on Sunday. Most everyone was feeling under the weather so I just went up for dinner on Sunday. I worked on homework.
Last week was okay, was finishing up my third type on antibiotic which had no real effect on my rainbow colored mucus. I am still coughing up multiple colors of the rainbow with a fever daily. Some have asked about my loss of voice and my throat closing: that was the original reason I got the trach. Way back to the beginning of February, every time I sat up, my airway would close. Well, my airway is still closing but now I am able to breathe when it happens. When it does happen now, I just can’t talk until it opens back up. I am looking into getting a program for my computer so when I can’t talk, my computer will do it for me.
Classes were okay last week. My third pharmacology test I only got a 194/200. I really screwed up. Just kidding. My teacher from Mental Health, I think really dislikes me. Anytime I make a noise, like breathe, reposition myself, or God forbid an alarm goes off, she gives me the look, like how dare you make a noise. I am so done with her. I have no idea why she “dislikes” me, but she is really getting on my nerves…I’m so glad that I am done with class with her. I will not have a good grade in that class, but as long as I pass, I won’t have to see her ever again.
My bioethics class is over tomorrow. Over the weekend, I finished my paper on Treating Impaired Babies and will get it up online later if you want to read it. Tomorrow my group has our project. I am having my computer read my part since I never have a voice in the early morning.
Today I went to see Dr. Mueller again. My chest X Ray showed 2 main areas of atelectasis. Since my mucus is still colored and with the fever, I was put on my 4th round of antibiotics, Cipro this time. A huge Mega dose. I also have to restart Tobi again. Hopefully, it will kick it otherwise I have been warned that if it is still there, I will be admitted for IV antibiotics. GRRRR!!! Sorry, can’t do that, I have class!!!
Other than that, I am hanging in here. The weather here has been dreadful. I have been staying up way to late at night due to late night storms, tornado warnings, thunderstorm warnings, power supply stopping for a few seconds, making my apartment alarm. Last night it stormed and rained and rained. I thought we might need a boat today, but we are fine, although many around us were flooded.
I have a final on Friday, Tuesday and next Wednesday and then I am done. I start summer session on June 16th with 2 psychology classes. Until then, big hugs to everyone!
Love MJ
Tuesday, May 27, 2008 8:27 PM CDT
Hi everyone:
Another week closer to the end of spring quarter and I can’t wait! There are two weeks left of classes and then I have 2 finals the following week. I have 5 tests left and my major bioethics paper left along with the small writings in bioethics to do.
This weekend we didn’t go to GJ’s for the whole weekend, we mostly hung out at the apartment and I worked on homework. People were sick so we didn’t spend the weekend up there, but did go up on Sunday evening for dinner. It was delicious and we had a lot of fun.
I do have pseudomonas, more specifically, stenotrophomonas maltophilia. I am on Tobi and Bactrim. I am still coughing up many colors of the rainbow, but I think my body is finally fighting it off since my fever is gone (or mostly gone).
Not much else is going on except the end of the quarter stuff. I have 2 tests this week and have finished my part of a project due next week. As of right now I am caught up and somewhat ahead in most of the classes, so I am ready for this quarter to be over.
Until next week, if I remember, stay strong and have a great week.
Love,
MJ
Quote of the week:
When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has opened for us." Helen Keller
Sunday, May 18, 2008 11:51 AM CDT
Papers, Pictures, and Angels
Hi everyone:
What a week. Too much going on to try to remember everything.
In the past few weeks, 4 of the kids that I have sent blankets to, have passed away. It is just so sad and hard to take. I had met two of them personally, so those hit the hardest. Even though the prognosis, according to the statistics is bad, you know that many kids are living past their prognosis and doing great, but each one comes as a shock. Each loss seems to take a piece of your heart with you, but yet we continue on. To me, since I know so many of the kids, I often am at a loss for words and the only way I can put my thoughts into words, is to make a video montage of that kids life. Since I met two of the kids personally, I made a montage for their families.
Right now I am antibiotics again. I have been having some weird medical issues this past week besides the normal stuff. The reason I got my trach three months ago, was because my upper airway was collapsing and it is doing it again. I can still breathe, so don’t panic but it is very weird. But Tuesday morning right before class, my throat felt really tight and I suddenly lost the ability to speak. My upper airway was cut off so as I went to talk, no air would go up through my vocal cords, so I was not able to talk at all. About 2 hrs later, I was able to talk again, only to have it happen again later. Since then it happens 3 to 6 times a day. After my airway opens I always get a huge mucus plug out after much hard work. I just wish we could figure it out to make the episodes less traumatic…but I’m hanging in there. My mucus is yellow and thick and the past few days have been streaked with blood. SIGH!
Classes are going okay. Only 3 weeks left. Yesterday I did 2 papers and started on my research paper. Thanks to everyone who has responded to my survey, there is still time if you haven’t done it already. I have had a great turnout, which will help my paper immensely. Today, I only have to write one paper. Oh, my pharmacology class is going pretty good. I thought that I wouldn’t do to well after the first test, but my last test, I got a 196 out of 200. That sure brought my grade up from a C to an A-. I really like my teacher. BioEthics is okay. Nothing too hard, just some of the discussions get really boring but overall it is fine. Mental Health is just dreadful. 85 f the questions come from the book which she doesn’t talk about in class, so you are on your own. The shortest chapter so far has been 39 pages, while the longest has been 82. YIKES! Not sure where I will end up with in that class, but oh well. Cognition and Learning is okay…not sure what my grade is in there, but we had a test Friday, that was ok, much better than the first test (sure makes a difference when you actually remember hearing it and can study notes, LOL!
This week, I just have one paper due and 2 little opinion papers and then the weekend at GJ’s. We are staying all weekend, so I will not have access to the internet until Monday. Big hugs to everyone. Our thoughts and prayers are with those that are under the weather and who are mourning the loss of their children. If you want to see recent pictures, please visit, http://www1.snapfish.com/share/p=608171211057349165/l=374197253/g=5758299/cobrandOid=1000131/otsc=SYE/otsi=SALB
Until next week,
Love,
MJ
Quotes of the week:
Grief knits two hearts in closer bonds than happiness ever can; and common sufferings are far stronger links than common joys. - Alphonse de Lamartine
Just as despair can come to one only from other human beings, hope, too,
can be given to one only by other human beings. - Elie Weisel
Monday, May 12, 2008 1:32 AM CDT
Hi everyone:
Sorry for the lack of updates. I do realize it has been two weeks since I last updated, but between nursing issues and homework and allergies. Let’s see, where do I start.
Classes are going okay. I definitely will not have an “A” average this quarter, but after missing one third of the quarter I am okay with whatever my grade turns out to be. Two of my classes are going well and the other two classes are horrible. They are graduate level classes that they opened up to undergrads so they didn’t have to teach the stuff to a different level, so if I end up with a B or a C, I will be happy. Just weird, but a way for the university to save money. Wednesday, I register for fall classes. If everything stays open, I will only have class on Tuesday and Thursdays. I will have a class that meets on Tuesdays and Thursdays only, one class that meets Tuesday night and another one that is only on Thursday night. One class is online so I will have a great schedule.
I had a doctor’s appt last week and it went okay. My CO2 was low and we played with my vent settings but it didn’t work. Brenda thought about it some more and fixed me! My CO2 isn’t “normal” yet but it is better. I did get to see my favorite residents (three of them)…was sort of funny, I said it would be funny to see one and in they walked in. Did that for three of them. I have to go back at the end of July for another follow up. We are going to call the office tomorrow to see if I can get a speaking valve. I so want to try to go without the vent or practice at it without having my trach open to the air and germs, if you know what I mean?!? I also keep coughing up yellow crap most days now. I did finish 10 days of Zithromax last week which stopped the yellow stuff but it must not have killed it, cuz it is back. Today I asked to have my trach changed since I was having trouble breathing and there was a yellow plug at the end of my trach! I do feel better now, but am still coughing crap out. SIGH!
Yesterday we went to GJ’s and had fun. We sat out on the deck and was sunning and I was catching some rays! Got a little color to my arms so I don’t look so pale anymore! Aunt Jill made an awesome dinner that apparently I so wanted, but I loved it! LOL!! After dinner we went to play Mah Jong but apparently, whoever wrote the directions, cannot write since the words are misspelled and just didn’t make sense. We were laughing ourselves silly reading the instructions. I am going to go stay over at grandma’s for Memorial Day weekend. It will be good preparation for this summer and traveling. Gotta get back into practice.
Not much going on this week. I have a test Friday in Cognition and Learning, not sure what I’m learning at this point, but hopefully the next section will be better. I started on my term paper for BioEthics, which is due the first week in June, so I am getting a good start on it now. It only has to be 5 to 7 pages, so it won’t be too bad. I also have to start working on my group project for BioEthics too. The only other class I have to write for is my Mental Health class in which I have to watch another movie. I also have a few more tests. I can’t believe this quarter is coming to an end in 4 weeks. Just seems like the other day I was in the hospital and starting the readings for my classes. I will say that I am so ready for summer vacation!!
Too see new pictures, you can visit my new page, a work in progress (more info to be added later): http://www.our-sma-angels.com/Margaret/life_with_a_trach.htm
Love,
MJ
Quote of the week:
It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power. ~Alan Cohen~
People grow through experience if they meet life honestly and courageously. This is how character is built. ~Eleanor Roosevelt~
Whosoever wishes to know about the world must learn about it in its particular details.
Knowledge is not intelligence.
In searching for the truth be ready for the unexpected.
Change alone is unchanging.
The same road goes both up and down.
The beginning of a circle is also its end.
Not I, but the world says it: all is one.
And yet everything comes in season.
~Heraklietos of Ephesos~
Saturday, April 26, 2008 7:29 PM CDT
Hi everyone:
Sorry for no updates in such a long time but do not worry, I am fine! I have just been busy adjusting to life with a trach and getting back into the swing of things with class and all. My classes are going okay and I am quickly catching back up to the class, thank goodness I only missed three weeks of this quarter.
This quarter I am taking mental health, cognition and learning, bioethics and pharmacology. I like all of my teachers and bioethics and pharmacology are my favorite classes. I have even registered for summer classes too. I am doing two classes during the first session this summer (mid June to mid July). I am retaking abnormal psychology (with a different professor) and forensic psychology (which sounds totally exciting).
I guess the only bad thing so far about my trach is my lack of supplies from the new DME. Yesterday I finally received suction catheters. I did get 2 trachs but my smaller size is two sizes too small, always an issue. It is really sad, when you are sent home and the DME company has yet to bring over the new equipment and you have to rely on friends to get by until they figure it out. I have been having blood sugar issues and lots of extra thick yellow secretions the past week (along with a fever and lots of plugging episodes). Thanks Dr. Proskin for being there and helping me to feel better. I started receiving nursing during the day. We are still working on getting them acclimated and trained to my schedule and likes. Time will tell to see how well nursing works for us. My blood sugar is either in the upper 80’s or the 120’s…it hasn’t decided where to stay yet. If you have some free time, here is the link to my video montage of my 79 day hospital video: http://www.our-sma-angels.com/Margaret/Videos/hospital_stay_2008.htm .
Today we went to the FSMA OKI walk and roll event in Cincinnati. We had a great time and met some of the newer families that I talk to online but finally met them in person. You can see the video from today: http://www.our-sma-angels.com/Margaret/Videos/oki_fsma_5th_annual_walk_roll.htm Thanks for all of the support that has continued.
Quote for the Update:
"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~ Kahlil Gibran
Tuesday, April 15, 2008 11:36 PM CDT
Home, Thank You’s, and Good Food
Hello Everyone,
I’m home! Did you miss me? LOL I wanted to update that I’m home and VERY happy to be here. I wasn’t discharged officially until this afternoon and didn’t escape until 6pm. We probably should have stayed until morning but I was anxious to come home to my apartment, which is overrun by boxes and gifts. I’m so glad to be here, at home. Please know that now that I am home, you should not send e-mails through the hospital website. If you want to reach me, you can e-mail me directly at, tweetyroll88@aol.com. I skipped the Amino Acid diet tonight and splurged with a McDonald’s cheeseburger and fries. It probably won’t help the IBS (irritable bowel syndrome) but it sure tasted good.
I wanted to take this opportunity to thank some very important people who helped me make it home, in one piece, just with one extra “body piercing”.
I must start with Brenda. Without her I truly would not have survived this journey. I can’t imagine trying to make it through the 79 days of ups and downs without her.
Dad, thank you for supporting my decisions and sticking up for me even when no one would listen. Thank you also for coming when I needed you!
Grandma, Aunt Jill, & the rest of my “P” family, thank you for the multitude of trips to the hospital with a never-ending supply of Pepsi for Brenda and support for both of us.
G & G and the rest of my “K” family, thank you for the cards, food, movies, and love.
To my day nurses in PICU, I thank you for your undying support and love. You comforted me and kept me laughing when there seemed to be nothing to laugh about. I will NEVER forget any of you.
To my night nurses in PICU, I thank you for helping me through several crises; from extreme stomach cramps to not breathing to massive amounts of blood. You did it all! You fought for me and kept me company during those late night “problems”.
To my day nurses in IMCU, I thank you first and foremost for working with myself and Brenda through some very difficult times. Your understanding and support are unmatched by any other hospital I’ve been hospitalized at.
To my night nurses in IMCU, I thank you for listening. Those late night conversations about everything from new movies to music to what makes each of you tick, they were unforgettable memories.
To the PCA’s in both PICU & IMCU, what would I have done without our long conversations about everything we have in common? Being “trapped” in the hospital for 79 days was made more bearable by having people my age to talk to, thank you.
To the RT’s, thank you for everything you did for me! I appreciate that you had conversations with me during treatments and treated me with extreme kindness throughout my stay.
To my favorite X-Ray technicians, you know who you are. Your support was unmatched. You listened when no one else could/would. I wish there were words to express my thoughts and feelings about you, but I know of none, other than thank you. Thank you for sharing your lives with me.
To the IV Therapy team, thank you! Your skills are unmatched by anyone. You all have hearts of gold and I appreciate your endless hours of IV placements and bandage changes, with conversations about everything from food to movies to joking threats of mistreatment if I didn’t bleed. You are amazing and very talented women!
To dietary, material services, and the security staff, thank you for the gifts and conversations, they certainly made the stay more entertaining.
To my residents, Dr. M, Dr. S, Dr. M, Dr. S, and Dr. R, what I can I say about you all? You were all extremely amazing! I appreciate your support and help with everything. You made everything possible for me to go home!
To Zach, thank you for listening to me and making me feel more confident about my decisions. You are an amazing guy and I am so glad you were there for me when I needed you most. Thank you!
Abby, although we had our differences throughout my stay, I truly appreciate your help to get me through this hospitalization and getting me home.
To the rest of the hospital staff, I hope I never have to come back to the hospital but if I do, I know what hospital I will be going to!
To Alexander’s family, what would we have done without your friendship? I never expected to make friends in the hospital, but I will treasure our friendship and long conversations, forever. Blue Raspberry Dum-Dum buddies forever, Alexander and I!
To Angie, Kim J, Sara, Kristen, and Mindy, thank you for your friendship! You helped me so much with school stuff and just being there when I needed to talk.
To everyone who bought us dinner, sent gifts, sent e-mails, and prayed for us. I can’t begin to thank each of you individually. Thank you for feeding us, cheering us, and supporting us throughout this time.
I think that is everyone! The hospital stay was far from ideal but it was made more bearable by the people mentioned above. They are all amazing individuals who deserve more thanks than I could ever give but I wanted to express my thanks in some form.
Monday, April 14, 2008 7:55 PM CDT
Meds, transportation, and a Video
Hi everyone:
Good news. Check it out here: http://www.onetruemedia.com/shared?p=58e352893fafc3eef6b407&skin_id=1006&pid=624&utm_source=otm&utm_medium=text_url
Anyway, this is the update for tonight. We spent all day getting things set up or tried to anyway for tomorrow. Our room is bare and empty and rather depressing. Today went well, they decided that I needed to practice one more time at taking care of MJ, so the contract became null and void and since 8am, I have been totally responsible for meeting all of MJ’s needs. We hooked up our oximeter and our new Infinity pump by Zevex, which is wonderful!! I am done at 8am tomorrow morning. MJ’s potassium is back down again after being off of TPN for 36 hrs now, so we will have to work on that. We have follow up appointments with GI and pulmo on May 5th. I guess that is all for now. Special thanks for the purple bunny to whoever sent it. It was sitting on MJ’s feet this morning. Special thanks also to GJ for our dinner tonight. Big hugs to all.
Monday, April 14, 2008 1:58 AM CDT
Mysterious, ornery, and where’s the food going?
Hi all:
It is day 77 and only a few more days to go. We will not be getting sprung tomorrow as equipment is not set up yet along with nursing. Plans are now tentatively set for a discharge on Wednesday.
Today was a pretty good day. MJ talked to the doc about increasing feeds to 85, but she only needs to go up to 75 to maintain her weight and not gain or lose. So MJ went up to 75cc/hour and has done fine. She also asked to increase her Zofran dose to 8mg every 8 hours and that wasn’t a problem. She did have to have a LoraTab pain med this evening due her tailbone and belly hurting. While we went for a walk, MJ’s feeds kept backing up and bile was pushing the feeds back into her Farrell bag. MJ showed her nurse and the resident. We would stop feeds and more bile would come back and if we let it drain back in, the bile would just push back. So we drained the Farrell bag (60cc) and then got MJ down and hooked her J-tube up to a drainage bag while she was off feeds for an hour and she drained about 40 more cc’s. Not really sure what was up with that, but we hooked her back up and she has been fine ever since. MJ’s two new adjectives describing her medical aspect are mysterious and ornery!! (She loves to collect adjectives!! LOL!
Special thanks to David for the new balloons. They sure brightened the room as we have been eagerly awaiting going home and have started packing stuff up. Thanks again. Special thanks to Alex and his family for the slippers. MJ was going to wear them tonight but her feet were too hot, but she is going to wear them tomorrow on our walk. Special thanks to MJ’s e-family for dinner tonight. We shared the leftovers with the nurses to thank them for all the wonderful care she has been getting. Hopefully we will have a few good, laid back, stress free days and be home mid-week.
Friday, April 11, 2008 1:35 AM CDT
Hi everyone:
Sorry that there hasn’t been an update the past two days…we are dealing with some issues right now and just haven’t had much time to write an update.
MJ is doing pretty good. Her J-tube feeds are up to 65 and she has been up most days for one to two hours at a time. The Bentyl sure helped. Her stomach is still running very slowly so switching to oral meds is a problem. I promise an update soon.
Special thanks to Janis and Joann who have bought us dinner the past two nights. Thanks guys! We love you!!!
Tuesday, April 8, 2008 2:05 AM CDT
GI issues, never ending nausea and reflux, Queen sign.
Hi all:
Sorry for no update Sunday night. MJ finally fell asleep at 2:30 am and it is 2:44am right now. Long nights filled with nausea and reflux that seems never ending. Sunday marked day 70, 10 weeks so far. We hope to be home soon!!
Tim has gone home again after passing the requirements for MJ to get out of the hospital, if only her belly would cooperate. We are waiting to hear from GI to figure out what to do next. We are concerned with the whole digestion issue. MJ ate some dinner Saturday night and it sat in her belly for 28 hours before being dumped into her belly bag, same with Sunday dinner. For now, not much is working in the stomach. We are also trying to figure out why there was so much stomach acid in her intestines from changing her tube…since the intestines do not have areas to pool stuff, so how 60cc came bubbling out when we changed her tube is a mystery. MJ is in constant pain and has constant nausea with times of extreme nausea and pain that is accompanied by sweats. She is keeping her mind occupied by movies, website work, and homework if possible at the time. Today, she went Christmas shopping and did about 75% of it. Not too bad.
Let’s see, Saturday, Tim did his 12 hr stint taking care of MJ. GJ and WWAJ came down and kept them company. I went back to the apartment and slept for about 4 hours and packaged up 9 blankets that will be sent out tomorrow. Would have done 11, but we still need 2 addresses. On my way back to the hospital, I stopped and picked up dinner at Bob Evans.
Special thanks for all the prayers…we just need to get MJ over this GI road bump and get her home. We have to get her meds over to oral meds as soon as her belly and GI tract allows it. Special thanks to the bearer of the wonderful queen sign today, whoever you are. I will take a picture tomorrow as it is hanging on MJ’s curtain/door for all to see. Everyone loves it as well as MJ. She wanted it hung up right away. Special thanks to Grandma and Grandpa Lockwood for buying us dinner tonight despite worrying and helping out since their grandson Nick is in the hospital right now. We will be praying for Nick to be home soon along with Leah too. If I have forgotten anyone and their gifts, please forgive us, nights blur into days the past few weeks and it is often very late by the time I do this and try to remember everything.
Sunday, April 6, 2008 0:35 AM CDT
Tube changing day, Morphine, & Maalox
Hi everyone:
Last night was a short night. MJ had lots of pain and nausea and sleep was few and far between. I slept in until 10am and MJ slept in till after 11am when Tim got here. MJ slept okay for periods of time and very restless at other times during the night.
Dr. Rose was back this morning and wrote for morphine every 4 hrs as needed and alternating with the nubain as needed every 4 hours. We also started back up on Maalox, at half the original dose which worked better. MJ no longer refluxes the Maalox back up into her mouth like at the bigger dose. It doesn’t stop the reflux but makes it less painful to reflux acid back up.
This afternoon, after getting MJ cleaned up, she got up in her chair and we went for a walk down to the cafeteria today. MJ was having a few desatting /congestion issues while up and by the time we were done, she was tired. Right after that it was Tim’s trach change on MJ. She was really nervous but Tim did fine and got that checked off. He is going to do one again on Monday, just to be sure, so now he just has to get MJ up and spend 12 hours doing her care tomorrow from 7am until 7pm.
Tonight we are just hanging out and are watching the old version of Willie Wonka and the Chocolate Factory between catnaps (LOL). Tim and MJ keep fading in and out of sleep and being awake. Then to add more excitement, MJ’s g-tube got pulled accidentally, so we changed out her J-tube and her G-tube. The J came out fine, but so did tons of bile and acid in spurts which made MJ’s belly hurt due to too much acid content. We quickly added Maalox to her belly to stop the burn. MJ’s G was hard to remove, as the stomach acid over the past 6 weeks turned her balloon into a misshapen blob that would not deflate. Both are back in and no longer hurting.
Tomorrow, I am heading over to the apartment to box up blankets and get the apartment ready for our return. I am also getting groceries and will be resting some, if I have time. I’m sure I will keep myself occupied.
This week we are going to focus on switching IV meds over to oral meds – either via G-tube or via J-tube which will take some time, I’m sure. We did not go up on feeds tonight as MJ just felt pretty crappy. Right now she is laying in bed, watching Who’s Line is it Anyway and laughing at 1:20am!!
Many thanks to the Langland’s for the fruit basket. It was a refreshing healthy change. Many thanks to the Roell family for dinner tonight. MJ loved her cheesecake again and Tim and I loved ours too!
Saturday, April 5, 2008 12:59 AM CDT
Sleepiness, a screw loose, nausea
Hi everyone
Sorry for the lack of updates the past two days, things have been going good for the most part.
MJ has been having severe nausea almost 24 hours a day that keeps us up late into the night/early into the morning, so updates have been slow to come. We had switched MJ to Aloxi on Monday and it is supposed to last 24 hrs, but these days, it isn’t really working since MJ also has to have phenergen almost every 4 hours around the clock along with Nubain. The last couple of days the Nubain only works for about 2 hours so MJ just hasn’t felt like doing much. Last night, to help counter the sleepless nights, MJ got morphine to spot dose in between the nubain doses.
She has been getting up in her chair daily and driving around. Thursday we drove through the 2nd floor hallways and then came back for medicines and nebulizer treatments. Yesterday, MJ got up and Hamilton’s came and fixed her headrest on her chair, don’t worry, she only had a few screws loose!! LOL! After her chair was fixed we just drove around the PICU/IMCU units and she was ready to lay down.
Feeding wise, we are up to 55cc/hr. Everything is going in the correct direction but not sure if the increase in feeds had caused the increase in nausea. MJ is eating some orally. She doesn’t really digest it and it just comes out, but she is enjoying tasting the food again.
Special thanks to the Langland Family for dinner last night (don’t worry about it, everything turned out just fine). It was delicious and MJ enjoyed the cheesecake bites. Special thanks to Angie for coming over and visiting on Thursday and bringing all the goodies to share!
Thursday, April 3, 2008 11:13 PM CDT
There will be no update tonight as the hospital is running on internal and external generators at this moment. We are powering down and will not be on until tomorrow.
Everything is okay. MJ is up to 50cc/hr, she got up in her chair and had lots of company today. Thanks to GaGa, Sophia, and family for the lovely dinner of pickles and cake!! We will update later tomorrow!
Thursday, April 3, 2008 0:14 AM CDT
Special thanks, Aloxi, and sleeping in late
Hi everyone:
Today went pretty good. There was some confusion with some orders but that was all fixed so today and tonight went well. MJ slept in until 2pm since we really didn’t get to sleep until 3 and then were up from 5am until 6 am and woke up at 8am. Thankfully, they let us go back to sleep and MJ slept in!
The afternoon was a bit rough until the Aloxi made it up, but by being on the computer she can focus on that instead of the nausea. She did not get up today. She knew that she would get Aloxi at 5pm and her being tired and wheezy in the lungs, she just didn’t feel like getting up, so she was able to rest some and just relax. We are planning on going for a walk tomorrow too, so that is the plan as of right now.
Special thanks to Laura and Cub for the Enchanted CD. MJ watched it this afternoon and laughed and laughed. It was great to hear music by Alan M again; we have sure missed his music in Disney movies. Special thanks to Aunt Linny for the box of goodies. I have been eating the popcorn and MJ is eagerly chewing gum. MJ did share some of the cookies with the staff again. LOL. Special thanks to the Sykora’s for the t-shirt. MJ sure loved it and will be wearing it soon! Special thanks to our mysterious donor of the tin of cheese popcorn. You know what I will be eating this week!! Special thanks to Katie and Aubrey for lunch today, despite being discharged from the hospital yourself today. It sure hit the spot and for once I was actually hungry for lunch, so thanks so much. Special thanks to the Applegate Family for dinner and all the Pepsi. Can you believe I only drank 2 so far?!?!? MJ would like to say thanks as she ate and swallowed 5 French fries for dinner and drank 1 ounce of tea! Looking at the French fries made her want to eat so it was great!!
Tuesday, April 1, 2008 10:25 PM CDT
Today has been a pretty good day. MJ was able to get up in her chair for about an hour. Unfortunately, after getting up she was "going green" again, meaning her feeds were backing up again. We were going to increase her feeds to 45ccs/hour but her new anti nausea drug, Aloxi, is out of stock so MJ is having to use Kytril, the shorter acting anti nausea drug, tonight. We're hoping that the Aloxi will be back in stock tomorrow.
Hope everyone is doing well! Our thoughts and prayers are with those of you who need. Also our thanks go out to everyone who has been praying for MJ and our family. MJ is very ready, mentally and emotionally, to go home. Hopefully we'll be able to go home and return our normal schedules and routines.
Special thanks to Angie for helping MJ with her new classes. And also to Jean, from WSU, for picking up MJ's syllables and books.
Tuesday, April 1, 2008 1:55 AM CDT
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!
Monday, March 31, 2008 1:50 AM CDT
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!!
Sunday, March 30, 2008 1:06 AM CDT
“It’s Not Easy Being Green” and “Tiny Bubbles”
Hi everyone:
Been a rough couple nights here, so sorry for the short update yesterday. Just apply tonight’s update to yesterday minus the paint!
The day started off fairly good. MJ slept to 11 and woke with minimal nausea and after getting washed up she was up and on the computer by noon, while I was changing her trach ties (and getting in her way too!) Grandma June and Aunt Jill showed up while I was finishing up so I could run to the apartment and pick up packages and supplies. Of course when I was gone Dr. Royce showed up and GJ and WWAJ got to meet him. Let’s just say they weren’t impressed. Jill noticed that MJ’s sore foot was cold while her leg and other leg/foot were hot. She asked and Royce pretty much ignored her and then talked down to her. Told MJ her foot was cold because she wasn’t up in her chair and then proceeded to tell MJ that her bowel issues would be solved if she got up in her chair 3x a day and started pooping. MJ assured him that she has been, but he didn’t hear that either. GJ told him how hard it is to get MJ up out of bed since the lift doesn’t fit under the bed, and he didn’t care either. MJ was pretty mad when I got back but then we remember what Dr. Fink said yesterday, “don’t listen to Royce!” so we aren’t.
Don’t get us wrong…MJ wants to get up but when you spend half the night up with severe nausea, refluxing and puking, and whenever she lays flat, stuff comes up, it sort of deters one into getting up. We are taking it day by day and see how MJ is doing before deciding. Like the past few nights, once six or seven PM rolls around, MJ’s stomach stops draining. MJ feels her tummy getting full as stuff backs up. We give MJ peppermints to help calm her tummy but it doesn’t work. The nausea builds and builds until it becomes unbearable. Tonight, green food started coming out the tube. The theme song for the first part of the evening is “It’s Not Easy Being Green”. After we waited for a bit, we asked for Kytril again, but tonight it didn’t work. MJ started refluxing so we stopped getting ready for bed and sat back up. One of Dr. Carvahlo’s tricks was that he wanted us to start Maalox through her g to lessen the acid coming up. Got MJ ready for bed while waiting for Maalox and she started refluxing again and green was coming out her mouth. We tried the Maalox because at the time, MJ’s stomach was “burning”. We were supposed to leave her g-tube clamped for an hour…she lasted 30 minutes and so we let it vent into a syringe. There was 30 cc in the syringe in 10 minutes, so we let it drain into her belly bag and it released about 60cc, complete with Maalox bubbles…hence the song, “Tiny Bubbles”. Finally at 1am, MJ was ready to pass out. What a long day.
Special thanks to Lauren for Queenie. Everyone here loves her and she was drawn on MJ’s PICC line dressing today. Queenie is quite popular. Special thanks to the Foley family for the gift card. OnceMJ can eat, she said she will be eating whatever she want! LOL! We love you guys and sure do miss Eden!! Love you! Special thanks to MJ’s e-family for dinner and for my daily pepsi fix. LOVE YOU!!! Until tomorrow, big hugs to all!!
Saturday, March 29, 2008 0:46 AM CDT
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.
Friday, March 28, 2008 0:25 AM CDT
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.
Thursday, March 27, 2008 0:40 AM CDT
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”
Wednesday, March 26, 2008 1:21 AM CDT
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!!!!
Monday, March 24, 2008 10:59 PM CDT
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!!
Monday, March 24, 2008 1:40 AM CDT
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!
Monday, March 24, 2008 1:35 AM CDT
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!
Sunday, March 23, 2008 0:56 AM CDT
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
Friday, March 21, 2008 1:22 AM CDT
Well another day is over and what a day it was. I can’t say that it was horrible and I can’t say that it was wonderful, it just was a crazy up and down day. Lots of stuff going on and some decisions made that just made it wacky!
The day started at 7:30am, when the surgery resident came and took the dressing off MJ’s toe. The unwrapping was okay, the removal of the gauze was a little painful, but the removal of the antibiotic packing was just dreadful. It was stuck to the skin and toenail and the resident had to pull! OUCH! MJ had just gotten back to sleep when at 8:30am, the surgeon came over and squeezed MJ’s foot, which sent her through the roof. We are keeping an eye on it because her toe and foot are pretty swollen and tense. We have to soak it at least once a day, today we did it twice…as it dries out, it makes it harder to move her toe, creating more pain.
MJ managed to sleep until 11am and at 11:30 we increased her feeds, as ordered to 35. After an hour, MJ said her belly was full and when I opened her tube stuff started pouring out. I’m not sure how much came out today, but in a four hour period 170cc came out. Sometimes, we can’t tell what is coming out, but sometimes, it looks remarkably like Tolerex, but what do we know.
Dr. Carvahlo came by this evening and sat down for a talk. He was concerned with the amount of output out of MJ’s stomach and said not to increase feeds tomorrow morning and to stay at 35. We talked about the plans and where we were going, and he said slowly going up but only as MJ can tolerate it. He is sorry we have been here forever, but is glad that at least she is tolerating some of the food.
After he left MJ had another bad breathing episode. As her stomach gets full of fluid, she has to work harder to breathe. Breathing through a trach is much different than breathing through your nose or mouth and once again, MJ was left gasping for air. MJ explained it to respiratory, the vent is giving her 15 breaths of air a minute that are a little low for air. She feels she needs more and when she goes to take a deep breath, it doesn’t give her anything, leaving her air hungry. RT kept playing around with sensitivity, volume, rate, pressure support and nothing was helping. MJ then asked the question that shocked everyone…”Why, Why can’t I use Assist Control??” It seems that it isn’t used here for no apparent reason and no one wanted to use it. Finally, Lorraine (thanks so much) hit the button to switch her and MJ has been breathing pretty darn well since then. This mode is what MJ has used pretty much for ever, well since 4th grade when she switched to a vent. The doctor, Dr. Butt Bhatt, Putt Putt agreed to the change as long as MJ lets him know when she is ready to come back. Come back from where, we aren’t sure…the dark side, the evil side, the smart side??? We just do not know!! I doubt MJ is ready to join the dark side anytime soon!
Well that was our day in a nutshell. MJ is resting pretty well tonight. The Assist Control mode is breaking up the atelectasis in her lungs and opening her up! Lots of stuff is flowing so that is good! Special thanks to the Lockwood Family for getting us dinner. We appreciate you taking the time to call especially since you are going on vacation tomorrow. Have fun and thanks so much for your help. Big hugs to everyone!
Wednesday, March 19, 2008 0:57 AM CDT
Hi everyone:
Another day, nothing done! Surgery came by at 8am sharp, turned on all the lights, said they would be back in a bit, numb my toe cut off the stuck piece and burn the corners off with acid, and left the room (leaving the light on)! So we waited and waited. Dr. Carvahlo came by this morning and said things were looking good and to keep up the great work. He wants MJ to eat 3 times a day or at least taste and spit out food three times a day. MJ doesn’t normally eat 3x/day so for breakfast and lunch, she had a drink of Sierra Mist. Delicious!! LOL! MJ’s friends came by for a visit. Thanks so much for visiting Sara and Angie. Sure helped pass the time waiting for surgery to come and it cheered MJ up.
Our afternoon consisted of waiting and well, waiting some more. Don’t you just love appointments where you hurry up and wait! MJ was coughing up lots of yellow secretions again and Dr. Stark ordered a sputum culture to be run…of course, as soon as we got the kit, MJ’s secretions stopped. UGH! As the afternoon wore on, MJ just wasn’t “right”…you know that gut feeling you get when something seems wrong. MJ kept saying she was fine! Around 6:45 or 7:00, it was obvious that something wasn’t quite right, besides the fact that surgery hadn’t shown up or called. MJ’s pulse was up to the 130’s, her sats were running in the low to mid 90’s, and her respiratory rate was climbing from her normal 15 to the 30’s. Later, MJ started to really struggle to breathe and was gasping for air setting off the vent 30 times a minute. I played with the vent to help MJ get some air and finally got her stable to deal with her belly. Her stomach was feeling full, like she ate 2 full meals back to back. I opened the tube and about 60cc of “stuff” came out. About this time, guess who showed up???? If you guessed surgery, you are right. MJ was downright miserable and thankfully Dr. Christian noticed that. He apologized to MJ for his long horrible day, admitted he forgot about her a couple times, but really couldn’t get away, and told her to feel better and that “right now is not a good time for you!” You have to love a doctor who recognizes the fact that MJ was having issues and was willing to reschedule for tomorrow. (So tomorrow morning we will be up early again to have the toenail burned off. Hopefully it isn’t too painful and it goes quickly. MJ will be asking for pain meds, so hopefully we can crawl back under the covers for more sleep after they leave.
Special thanks again to Sara and Angie for visiting. The flowers, balloons and pastries were wonderful. Special thanks to dietary for the singing bunny. He is sitting at the end of MJ’s bed, protecting her from toe doctors who sneak in at night! And a special thanks to the Lee Family for dinner. It was delicious and I finally had time to eat at midnight! Good thing it was cold to begin with!! Thanks for the phone call, it was great to hear your voice after always talking on the telephone. Big hugs to the girls. Until tomorrow!!!
Tuesday, March 18, 2008 0:59 AM CDT
Hi everyone:
Can you believe it has been 50 days since MJ last breathed fresh air. Tonight she was a bit bummed about this whole process but is hanging in there! The news bummed her out since they are talking about the beginning of spring.
Today was a successful day. Because I drew on her foot from yesterday morning until last night and then this morning, they could accurately see the growth of her pain area on her foot. MJ was started on clindamycin IV for now. Surgery was finally consulted this morning and the resident came over. The plan is to do soaks 3x/day to get the infection out first and then take out the section of toenail that is stuck into the actual skin. Surgery will be over in the morning to check out the pain, as it appears that she has cellulitis in her foot now. Surgery will now also be following MJ along with the nephrology and the GI team. MJ is meeting more doctors on more different teams as our stay continues. She is collecting friends as well as doctors. Thank goodness most have been great! She definitely isn’t collecting certain residents, LOL!!
Her nausea is almost completely under control with the meds every 2 hours. Not often does she have break through nausea but she can tell when it is time…most of the time, she gets really nauseous or starts refluxing. As long as we do q2, feeds are going okay. Her stomach still is putzing along at it’s own pace, doing whatever it wants, but the sooner we get out of here the better.
The lungs are doing okay…coughing up yellowish junk from her trach. She is still bringing lots of stuff up around the trach too which is purple from the gentian violet. If any of you are Minnesota Vikings fans, blame MJ for lousy seasons, she is coughing up purple and gold, so we guess she ate them and aspirated them and is coughing them out. Weird to see purple stuff, but we are using our odd sense of humor to liven things up! It is a good scare tactic to freak out residents…they come in while suctioning and ask what color we are getting and I say yellow and MJ suctions something out of her mouth and freaks out and says, “Oh no, I am coughing up purple stuff, what is wrong with me!!” We are evil aren’t we!
Special thanks for all the hospital E-mail notes. This morning’s were cracking us up, it took us forever to get going this morning since we were laughing so hard! Special thanks to the Slaymaker family for dinner tonight. We enjoyed it and tell Jacob Cole thanks and give him a big hug from us. Sending prayers out to all of the other families whose kids are sick or in the hospital too, it has been a rough winter for so many kids.
Monday, March 17, 2008 1:40 AM CDT
Hi everyone:
Another day here in our new home, just kidding! Need some humor these days. So to start off, thanks Jenniffer B for all the jokes and humor. MJ loves starting off the day with your emails!!
MJ slept in until 11am and felt okay. Still has nausea, but what else is new?!?! After a bath and hair washing, she felt okay. She even sat up and went on the computer! Dr. Fink came in and said that MJ’s toe looked pretty good and that “we” will continue to watch it. I asked if we were watching for her toe to fall off or what before we did something. He didn’t find the humor in that! He said he would talk to the residents to tell them that if it gets any redder or more pain, to start antibiotics right away….but obviously, they didn’t get that memo!
At 4pm, with Nick’s help, we got MJ up in her chair. After 15 minutes in the chair, MJ was in severe pain and had a lot of nausea going on. She got nubain and Zofran but it didn’t do anything. We asked the nurse to help get MJ back down after about 45 minutes being up, Lorraine, the RT helped us doing the vent, lift, IV pole dance! Not a pretty sight! Anyway, got MJ down and situated to the best that we could, but MJ was in pain. What hurt?? MJ’s arm, head, ribs (all that coughing) and her toe! Called the resident on call, who was a dork once again. Unfortunately, we got Dr. Mister, Let’s Go for a Walk again! MJ was in severe pain while he tried to decide what to do. At 9pm, MJ got her next dose of Nubain and still no answer….he called in an order of Tylenol. YIPPEE, NOT! He first wanted to order Toradol…you would think that is all they prescribe here. He asked why we can’t give it to her. I said she quit breathing? Hmm, I told him, “exactly what I said, you give it, her airway tightens and she quit breathing!” So after a big fight, he graciously allowed MJ to have the rest of her dose (5 mg). MJ is done with him and doesn’t want to see him again, unless she can run him over! Obviously since he didn’t get the memo about antibiotics, he didn’t do anything about her toe. I drew lines and dots on MJ’s foot to show them how far the pain has spread.
That is about all for today. MJ is resting and sleeping uncomfortably tonight. Needing more repositioning and covered and uncovered and cooled off. Here’s praying for a better day tomorrow! Special thanks to Aunt Me-Me for dinner tonight. It was good and MJ can’t wait to eat out with you this summer when she can finally enjoy food once again. On a side note, MJ said eating with a trach is easier than without. She feels safer than ever before. She has adapted to trach life easily, it is just her stomach who went on spring break without her. MJ said she will be very angry if she gets out and her stomach has a tan!!! LOL! Hugs to all!!
Sunday, March 16, 2008 0:24 AM CDT
Hello everyone
MJ had an up and down day today. No, we didn’t get up out of bed but just how she felt. Her belly feels better, as long as she is on her drugs, but no break through extra nausea, so that is a step in the right direction. MJ is up to 20cc/hr through her J-tube and the bile no longer tries to make a quick escape out the tube during medicine time. LOL! But her toe and lungs are worse today. Her toe is very sore and the pain has radiated out further than just the localized area. Surgery said to trim the nail – they weren’t going to do it and the nurses aren’t allowed to do it, so Aunt Jill did it. She got a small amount cut off but it caused a lot of pain so they stopped. Thanks Jill and Pete for coming down today so I could run home and get more supplies. MJ and I truly appreciate it!! We are soaking it in warm compresses, followed by a cleaning with diluted peroxide, then bactroban and covered with gauze. MJ’s lungs feel tight and she has periods of cold sweats while trying to get a deep breath. This afternoon I asked for nebs every 3 hrs. and after 4 hrs then said do the next one now and see how you feel. After the neb was done, they came in and said, “see, you feel better don’t you!?!” MJ said no, not really! They weren’t going to write for q3 until morning so I said, just write it down in your books that I will be doing nebs every 3 regardless of what you say since I brought our own and I absolutely refuse to have to ask and wait for someone deliver a neb treatment if MJ needs one right away!” I got my point across quite well…they didn’t quite write q3, but they did write that MJ can have one as necessary, up to q3 daily!
Tonight was Nurse Wratched or Wretched again. I figured her out this time. She would announce that within the next hour, we need to do trach tie change, gtube bandage change and soak MJ’s toe, so she would leave and MJ and I would get it done! LOL! She would come back in and I would say, done, done, done!!! We just omitted her from the picture and get what we need done ASAP!
Special thanks to the Chloe B and her family for the gorgeous flowers. I will take a picture of me with them to share. They are bright and cheerful!! Thanks again. Kelly T and Kristin G, MJ finally got her valentine’s day card envelope. Thanks, we are hanging stuff up tomorrow. Special thanks to the Applegate and Hanson family for dinner tonight. MJ is back to not eating but knowing MJ she would probably rather eat in Iowa!!! That is all for tonight…have nebs at 4am and 7am and just finished the 1am. Long night ahead so time for me to say goodnight! Thanks for all your continued support and prayers, MJ is fighting the hard fight and is finally starting to get the upper hand!!
Saturday, March 15, 2008 1:31 AM CDT
Hi everyone:
Short update today, but here is the scoop! MJ now has atelectasis in her left lower lobe…a cold, from reflux, or just because of not feeling well. Who knows but we spent a lot of the day coughing. GI wise, things seem to have lessened. MJ is back on Tolerex, diluted of course, but is tolerating 15cc/hr. She has been there since 2pm but didn’t want to put it up at 11pm at night and run the risk of not sleeping well tonight. So MJ had the usual nausea and headache but her blood sugar was in the 120’s most of the day. MJ’s toe did not heal at all, instead it looked a little worse tonight, so they are going to try to take care of it this weekend before it gets any worse.
This weekend will involve lots of CPT, IPV, and nebs to get that area opened up so nothing grows there. The X-ray showed something, so in MJ’s book that is a significant change. MJ was more awake today despite the extra dosage. Dr. Royce wants the lights turned on in MJ’s room (all the lights) so she wakes up early. He wants her back on schedule…MJ said this is my normal schedule…sleeping in! Royce wants MJ up twice a day. We figure that getting up in the sling is once, to chair would be twice, and then back up in the sling to bed is 3x/day. He just doesn’t get how long it takes to get MJ up and situated. MJ did get up in the sling today, we were a tad nervous going to her chair based on how many times MJ needed to cough up plugs and how far across the room, the cough assist would be.
Special thanks to Sophia S and her family for the wonderful dinner. MJ says, “I love you Sophia!” Thanks for all the special emails daily. It sure is a big pick-me-up for MJ and the shortest note can bring a smile to her face!
Friday, March 14, 2008 2:22 AM CDT
Hi everyone…
Today’s theme song is “You Had a Bad Day”…if you haven’t heard it visit: http://www.youtube.com/watch?v=j7g6LenMQ5E That was the day today for the most part but ended on a tad of an upward swing.
MJ woke up early (10am) in a bad mood…not mad but trying to throw up and with a blinding pounding headache. I went and asked about morning labs and MJ’s glucose level was 200!!! YIKES!! Asked for it again, it was 244. Demanded an answer to the WHY? It was 244 and seemed to be on the upward swing. We turned her TPN off for an hour to which her blood sugar dropped to 159. DOUBLE YIKES! We went through many ups and downs today with her blood sugar and it is no fun. No reasons yet, as to why, but hopefully we will get an answer. My thinking is the Pedialyte is too much sugar to process in its form that it is just a sugar high. I am trying to push Tolerex but now am not sure, because MJ’s gtube is draining some grayish-pinkish-purplish fluid that looks remarkably like Grape Pedialyte. Hmmm, how long will it take for them to figure it out? This afternoon Dr. Royce did adjust MJ’s nausea meds to a higher dose since they were only working to take the edge off for about an hour, so MJ would be miserable for another hour. This seems to have worked and MJ was back to her funny obnoxious self, cracking jokes and laughing hysterically!! It was good to see her being herself again! MJ also had an indirect calorimetric study done to determine her caloric needs. They were right on the target range with her TPN, so it will be interesting to figure out how her diet or recipe as they say meets it!
Other than that, after nightly meds (the new adjusted meds), MJ started feeling like her ole’ self and was talking and dancing in bed. Hooray! So, back by popular demand, is MJ talking again. Just go to http://www.our-sma-angels.com/Margaret/Videos/mj_talking_part_two.htm and take a listen. You will see that if we get the nausea under control, MJ is back in control!!
Special thanks to David for the balloons. MJ loves them since we thinned through our balloons and got rid of a bunch. Special thanks to Cubby. MJ loves the flowers and the Scooby Doo balloon. She loves it because it is from you! Special thanks to Jeni, Annah, and Krystan for tonight’s dinner. It was delicious and wonderful. Thanks for helping out.
Thursday, March 13, 2008 0:56 AM CDT
Another day has come and gone and here we sit. Today was day 45. Today was not a good day for MJ. Today was just one of those days where you feel old and feel like you are falling apart!
MJ just didn’t feel good from the get-go this morning. She woke up at 11ish, and was beyond nausea to the pukey feeling. Her head hurt, had yeast on her neck from a night of sweating, lower sats, more secretions, more coughing. At 3pm, they started her on pedialyte (the delicious grape flavor) at 10cc/hr. It seems to be going in, hard to tell since the stuff coming out her G is orange in color today. MJ had a visit twice from PT. Dr. Carvahlo asked for PT to come up and roll MJ from side to side…only he didn’t write it that way. He wrote, “get patient up and rolling 3x/day!” PT thought he was just being funny!!! Hamilton’s is coming tomorrow to cut a notch for her vent tubing so she can drive soon!
She had an okay afternoon and got to visit with WWAJ and the doctor cousins! She felt pretty good for awhile and then started to get that pukey feeling again. She did feel somewhat hungry, so she ordered tomato soup and had a sierra mist to drink. She ate at 5:30 and it seems to have stayed down (or so we thought). Anyway, after dinner she wanted her feet rubbed. I was rubbing her left and MJ wanted her right one rubbed. I touched her big toe and it started bleeding. She has an infected ingrown toenail. The resident tonight, we shall call him Dr. Mister let's go for a walk, came down and looked at her toe, said it was infected, and said you are on antibiotics and it will cover it. OK, fine…so before he leaves, he tells MJ that he is going to come back in the early afternoon and makes sure that MJ walks up and down the hall at least twice tomorrow. UMMM, OK!!! We tried really hard not to laugh at the poor sap of a doctor. Read the chart first dude before you open your mouth and insert both feet! I told him that we would do that after Hamilton Medical comes over to adjust her tray on her wheelchair, but as soon as they figured out where her vent tubing should sit, we would have her walking laps! After I said that he tried to figure out what chair I was talking about. Duh!!! So after doing hot compresses on the toe for 30 minutes, and doing nebs, MJ said her foot hurt, when I looked, the old phlebitis on her foot was raised, hot and sore again…3 weeks later. Dr. Duh said, “the antibiotics will cover it (maybe that could be his name!) Weird. Tonight at 11:15, dinner, which was around 5:30 came out of the g-tube which had been open all day. Definitely slow digestion if you ask me!!! Tonight MJ just wanted to go to bed and to be left alone.
Special thanks to Jill and the boys for bringing snacks down and staying for a visit. Special thanks to Aunt Joquami for the gift card. I’m sure we will be using that soon! Special thanks to the Coggin Family for the delicious dinner and the gift card that you sent. I love you guys too, so thanks so much. Big hugs to everyone!!
Tuesday, March 11, 2008 11:21 PM CDT
Hello all:
Today was another slow start of a day. The TPN chunks, once again created havoc on MJ’s system. Last night and today, MJ’s sugars were running higher than normal all day today, leaving MJ with a pounding headache. SIGH!!
Dr. Carvahlo came in this morning and talked about starting grape Pedialyte (of course the hospital doesn’t have grape, so who knows where that is going or when it will be started). He wants to start feeds at 10 and go up 5 after 8 hours. He warned us that MJ will not feel the best for the next two days as food starts to go through. The reason for grape is so we can see if the food is going back into the stomach. If the Pedialyte goes back through the stomach, we will stop and let the bowels rest more and try again. He did tell MJ that if she is hungry, she can eat orally – mostly soft stuff and to leave the gtube open. He isn’t worried if she throws it out the tube, the importance is that she is keeping the sensation of eating going to help stimulate the bowels to start moving. Tonight MJ had a few French fries and a few bites of potato soup!
Physical therapy is going to come by and start rolling MJ around. I roll her to the right on her side twice a day but haven’t figured out how to roll left because the vent tubes are too short. Not sure how they are going to do that, but whatever. RT came by today and we were able to fix MJ’s vent to keep it from alarming. One of the connectors developed a tiny leak which set off the vent to trigger a breath! So far so good!!
Before I forget, MJ says special thanks to Aunt Maryanne and Uncle Dave for the beautiful flowers, balloon and elephant! I apologize for forgetting to say that yesterday, but that is what I get for doing an update too late in the evening/early in the morning! They are truly beautiful. Special thanks to Mrs. P and Mr. Womack for sending me food to eat. Brenda sampled the popcorn and MJ sampled the cookies!! Thanks so much for thinking of us! Special thanks to Mary, Kate and Ryan N for lunch today. It hit the spot. Special thanks to the Gundy family for our dinner tonight. It was MJ’s first food in almost 3 weeks, so she sure enjoyed her bites.
Tuesday, March 11, 2008 1:48 AM CDT
Hi everyone:
Today was a backward waiting crazy sort of day. I got MJ up at noon and right away they came in to start feeds at 10cc but within 30 minutes, bile was coming out of the J-tube climbing into the Farrell bag, nothing was going into MJ at all, it was all being pushed out backwards through the Farrell. (The Farrell bag is a bad with a valve that can relieve pressure that can occur while getting feeds – think of it as burping). So, J-tube feeds were stopped. Well, the day shift wasn't good about giving her nausea drugs, so MJ got really far behind on nausea and was pretty miserable this afternoon. Then it was time to change, but nephrology came by but he was talking to Abby so I butted in and asked and the doc said change first he would research. I was able to change MJ alone with no help!!! So the doc came in and we talked about the potassium issue and he asked us more questions than we asked him!! LOL! I love doctors who are willing to ask questions and he wanted to know about all the issues that kids with SMA face. His theory is that he believes MJ is losing potassium out the stomach, and by not being on her formula. We talked about yeast, sweating, protein issues, the whole gamut. He also believes and said that doing boluses, via IV, it won't work because it is like an overload...it can't absorb it quickly enough so it just gets dumped off. So based on the feeding, they discussed increasing it at a faster rate to push past, but MJ said no, and I asked if that was a good idea. All said no!! Kind of like a big duh??!!) I think it probably would have back flowed anyway no matter what rate MJ was on. Tonight they came in and gave her the eryrithromycin and flushed and clamped. But an hour later, while clamped, it was pushing past the clamp and trying to get past the cap, out onto her lap! Tonight we hooked her J tube up to a Farrell bag....so on the right side of the bed, we are hooked up to the G-tube belly bag and on the left side of the bed, the J-tube Farrell bag. So today at 4pm I did a trach change. We switched from the Shiley to a Bivona – since it is softer. : Greg, RT was there and since we had issues the other day pulling it out, he did it and he had trouble...the cuff wouldn't deflate all the way. MJ had a little bleed but I put the bivona in and it went back in very smoothly. Mary said that I did excellent. MJ had a Shiley - it is harder and made of PVC plastic... while the bivona is softer and made of silicone. At first MJ hated the Bivona. MJ said if felt like a live worm in her airway, so we added more air to the cuff and she felt better.
So tonight MJ got chunky monkeys in her TPN again!!! Of course we then had to stop TPN and go on the crap from the other night. MJ's resident wrote it out this morning and Dr. Royce and another resident rewrote it for more chemicals which cause it to precipitate out. It is kind of like if you have a glass of water and start adding sugar....so much will dissolve until a certain point in which the sugar just settles...that is what is happening. The docs keep adding more and more potassium until it settles, so we doubt MJ will get up in her chair tomorrow because she will be sleepy again. She dropped her sugars and then we checked at midnight and they went from 73 to 135 and then our evening ended with needing to change the vent circuit because it was breathing on its own. The vent gives 15 breaths, MJ can trigger more, but water gets in the exhale valve and with all her nebs, it gets sticky, so the valve got stuck open and air gets in the valve simulating a breath so instead of 15 breaths, she was getting up to 30 and getting light headed, so I fixed some stuff until RT got here. I put her on the chair vent, Lacey changed the new, put her back on the other vent and started the last neb, and it started doing it again....grrr!!! For some reason, after 43 days, the vent isn't cooperating with the nebulizer so when it is nebby time, we have to increase the sensitivity from 2 up to 7. So, that was our day, boring, huh???
Special thanks to everyone who sent an ecard/note to MJ. They brought down about 30 this afternoon. Thanks Missy W for the wonderful teddy bear. He is so cute and you know I like purple. Special thanks to Lou for the wonderful gift of CD’s. I promised MJ to listen to them tomorrow, which hopefully will be less stressful and crazed. MJ was mouthing the lyrics to most of the songs as I showed her each CD. Special thanks to Aunt Linny for the wonderful care package for us. I broke open the chips while MJ was trying to stimulate her belly by using the grape lip balm. MJ was having a bad “wave the white flag day” so she used some of the cookies to bribe the nurses into having a better day. It worked. The PCA Nick, absolutely loved the cookies and thank you for sharing!!
Monday, March 10, 2008 0:28 AM CDT
Hi everyone
MJ had a pretty good day today. Today is day 42 which makes it 6 full weeks here. Her dad flew home to go back to work while her bowels start working. He left at 8am and MJ slept in until noon and only woke up because I made her get up. Her nebs were already done so after getting changed, she got up in her sling, not the chair, but her lift and sling. She lasted 20 minutes, which is good for the first time! Got her back down and comfortable and out she went.
Dr. Royce came in and woke her back up and MJ agreed to try Pedialyte tomorrow – Monday. We will be going slow and MJ is going to control it regardless of what they say. MJ is feeling like she is hungry so that is good indicating that she is getting close to being ready. MJ’s potassium level continues to drop on a daily basis. They give her a boost and it just drops back to below normal 8 hrs later. If it continues, MJ will see the kidney doc because all her other kidney function levels are normal, just her potassium is low.
Tonight I noticed that MJ didn’t get Zantac added into her TPN when the new bag came up this afternoon, so demanded that to be added. It is running as I type. Why it was removed, Lord only knows! You can be sure I will check the new bag tomorrow. Sigh!!
That is all for an update today. Big hugs to all!
Sunday, March 9, 2008 0:49 AM CST
Hi everyone:
Last night was rather stressful and we did sleep. We woke MJ up at noon. She was rather lethargic. They did a glucose level at 8am and it was 72 and at 9am, it was 68 but by 10, it was up to 115 (can you say sugar rush). MJ’s TPN was delivered at 9:30, so the TPN helped her return to a more normal level. It did however take MJ until 4 pm to quit shivering and to finally regulate her electrolytes back to a stable level. MJ’s PICC line was working fairly well unless they wanted to draw blood. So, IV therapy had an X-ray done to check the placement – it was fine. After that, IV therapy came and administered the “clot buster” and MJ’s line was working again…HOORAY!!!
Nausea was the same all day, if MJ went past every 2 hrs, she would reflux a lot, so we did that every 2 hours. Regarding pain meds, MJ did not request any until 4pm, so the Neurontin through the J tube is working. She only had 2 doses this afternoon (4pm and 9pm). She apologized that she had to use it. We told her she was awesome for doing so well.
We didn’t do much today as we were in a blizzard warning and the whole county shut down. We were snowed in at the hospital! How exciting!! NOT! We got about 14 inches of snow or so, but have 4 to 5 foot drifts due to the wind. (Of course in the room, we look out into the forest of a brick wall – the mural painted on the wall.) So, we would have no idea except for turning the TV on. Special thanks to the Harman Family for the money for food and for cheering MJ up this evening. Thanks Potters for trying to get us dinner, but nothing was open, we will figure it out. I hope everyone remembers to spring ahead already this year. Safe travels for those affected by this blizzard, it is crappy out there! Love and blanket hugs!!!
Saturday, March 8, 2008 1:44 AM CST
Hi everyone:
I will sum up the day with what MJ said to Mueller this afternoon. Just imagine MJ staring you down, shaking her finger and tsking at you! That was our day that just kept getting worse as the day progressed.
Today’s declaration was to get MJ off her Nubain with no backup plan as to what was to control her arm pain (this is from her injury last December). We demanded an alternative before weaning or switching. Tim and I did complete the CPR training (after causing waves) after demanding they bring it up to us to do it in the room. They said no they couldn’t because it would traumatize the patient. MJ said, “Oh cool, I get to watch!” At 2pm, Tim did his first trach change, which was traumatic as the cuff didn’t deflate flat and was stuck, so after 3 attempts to remove it, Abby came in and yanked it out and Tim put the new one in. MJ wasn’t too happy and Tim wasn’t happy when 10 minutes after we were done, they mysteriously found a Bivona.
After the change, MJ asked for her Nubain and was informed that they switched it from every 4 to every 8 hours, with no other option in place. Tim demanded Abby come back ASAP and yelled at her for that smart (not) move. She informed us that they ordered IV Toradal. Now if you remember, we attempted IV Toradal 3 weeks ago. MJ’s reaction was bronchospasms, followed by no breathing, followed by reflux, finishing up with an extremely high heart rate. NOT GONNA WORK!!! So they decided to switch MJ cold turkey back to Neurontin through her J-tube. Gee, we thought total bowel rest, meant total bowel rest not shove more drugs through it. Plus the fact that liquid Neurontin is suspended in alcohol and that should not go directly into the intestines. So they said they will send up a pill and flush it through the J-tube –which, FYI, doesn’t fully crush so we would run the risk of clogging her J tube and having to do an emergency replacement 3 times a day. I demanded extra foley caths be brought to bedside along with orders that I could change it without supervision if needed. We also had him write that they would decrease the dose of Nubain but if needed MJ could get it every 4 hours. Then the other piece of the pie was that MJ has to get up in her chair tomorrow. Sitting up is fine, it is the fact that she has to lay flat to get up, and every time she lays flat she starts refluxing.
The evening was pretty calm because MJ was mad and refused to talk. Around 10:30 to 11, MJ’s TPN pump was alarming that it was occluded (this happened all night last night too). They kept having to replace the IV tubing multiple times. So they took the bags out to replace the tubing and found chunks in the TPN. UMM, major problem in that. TPN is a total liquid that goes through the IV, chunks do not. So the TPN had to be tossed. So, here we are at 11:30 at night, and MJ has no TPN and they don’t start making more until noon tomorrow. We threw a fit and yelled and tag teamed the resident. By midnight, MJ became extremely lethargic, sleepy, major headache, etc, which we demanded the resident come see…”this is why we have TPN and why she shouldn’t be without it”. The earliest TPN could be back is 10am. We had to compromise, after much fighting, that MJ would get a dextrose solution of 12% along with Potassium (MJ had a 4 hr potassium flush at noon and by 8pm, her potassium level went from 5.5 down to 3.2. UGH! They would make it in pharmacy and add calcium and magnesium to that mixture since those were down again this morning along with her lipids. After more fighting, they decided to add Zantac (since it is in the TPN) as a J tube med. Liquid Zantac is alcohol based so they had to switch it to IV format. At first the resident said she didn’t need it since she got the max dose of Nexium, she would be fine without Zantac. Kept pushing and pushing. I reminded him that right now, MJ is extremely nauseaus and refluxing multiple times and hour. He asked us how we knew she was refluxing??? UMMMM< she feels it and is coughing it out. He left and came back and said that she could have it because she is “severe”!! UGH!! So, MJ is sleeping pretty well right now. She is off her 1 L of oxygen and satting at 96 – 97%. They will be running blood tests in the morning to see how she fared being off TPN for this long. WE hope it doesn’t set her back further.
Special thanks to the Denk and Doebbert Families for the dinner tonight. We are glad they were still able to deliver. We were in a winter storm warning and are now in a blizzard warning. Dinner was delicious and we are so grateful we didn’t have to venture out into the storm if we wanted something different. Special thanks to the cafeteria worker who gave us a gift card since we are frequent fliers…so much so that she thought Tim worked here! LOL! Special thanks to my mom for the new gift card. Breakfast, here we come!! LOL! Tim is flying home on Sunday so MJ and I will be here while her bowels decide when to get better. Please say prayers for us next week as it is Dr. Royce’s turn again. We hope that MJ doesn’t have any “non-death events” and we have to deal with his stupidity! Thanks everyone!
Friday, March 7, 2008 1:06 AM CST
Hi everyone:
Today was an okay day but sort of stressful.
First off, MJ is off Tolerex feeds and Pedialyte. Last night, she was off after the CT Scan since there were no orders and no one wanted to order them last night so we just left MJ on TPN. We woke up to getting a new IV Pump on the other side of the bed. MJ’s potassium went from 5.2 down to 2.5 in 24 hrs, so she was getting a slow flush of potassium. A few hours after the potassium her blood level was back to 5.3. The docs believe it is due to the amount of bile and stuff coming out of her G-tube. The sad thing about the blood draw was that the PICC line wasn’t producing any blood. IV fluids are going in, but MJ is just not sharing, so the first draw was fine, but the last two, MJ had to be poked. They tried to jump start MJ’s system by increasing Pedialyte by 5cc every 20 min or so. They jumped up so fast it would have worried us, but they forgot to unclamp her J-tube, so it all went in her Farrell bag. MJ’s resident and Dr. Mueller sat down and discussed what they were doing and made the executive decision to stop feeds and let MJ’s bowels and stomach rest. They are pretty sure, MJ has gastroparesis, an ileus, and achlorhydria besides her UTI and a major flare up of reflux.
This afternoon, we had MJ’s first discharge planning meeting. It was a tad stressful on MJ because they kept asking what was the discharge date and everyone kept saying that it is up to MJ. Tended to stress her out since the delay is “all her fault” and right now, there isn’t an answer to that question. Who knows when everything will start working, it is not up to us. GJ and Aunt Jill came down for the meeting and after the meeting, Uncle Chris and cousin Andrew came down.
Special thanks to the Greene’s for the gift card. We use those for breakfast and they are coming in handy. Thanks. Special thanks to Aunt Vicki, Uncle John, and cousin Henry for my box of M&M’s. I love you too!!! Thanks Jana for the picture of Kyle and Tyler. It is a great picture and is hanging on my wall. Everyone now knows that my wall of kids are my special friends and they check them out daily. Special thanks to Mary B and family for dinner tonight. It was delicious. Until tomorrow, love and blanket hugs!!
Wednesday, March 5, 2008 11:02 PM CST
Today was a day of sleeping, drugs, waiting and stress!
MJ had a long night with the Zofran only working 60 to 90 minutes and then getting Phenergen 2 hrs after the Zofran. MJ slept until noon when we got her up to get stuff done.
So, all of the previous tests came back. They found something, probably not what is causing the digestion issues, but her urinalysis came back positive for citrobacter freundii and MJ started antibiotics for it. She is on cefepime for the next few days – not sure how long yet. They did do a higher dose in case the citrobacter freundii could be hiding elsewhere in her body. All the other tests have been off a little bit. One day she is running high, the next low. Dr. Carvahlo also ordered 2 CAT Scans – abdomen and pelvis and then one of her head.
The CAT Scan was supposed to be this afternoon and it got pushed back to 6pm and then we didn’t go down until after 7pm. UGH. MJ was a tad stressed out by it but did really well. Dr Mueller ordered Versid for the test so MJ wasn’t too stressed out by transferring to the table. The initial results are back. The head scan was “normal” (MJ is being normal again, whatever that means) and the abdomen doesn’t show any drastic changes except for “changes consistent with SMA. So, who knows what is causing her food to not be digested. Can’t wait to see what is in store for the morning.
Special thanks for the continual prayers and thoughts and special email greetings. MJ sure enjoys reading them. Special thanks to the Reilly’s and Sykora’s for the Pajama Gram. We are going to wash it up tomorrow and try to get MJ to wear it. She loves the butterflies of course. Special thanks to the Kuester Family for dinner tonight. Thanks for the special desserts. Everything was delicious.
New pictures updated at: http://www.our-sma-angels.com/Margaret/trach_pics.htm
Wednesday, March 5, 2008 1:11 AM CST
Hi everyone:
Another day but not much going on here. They just did blood work and the doctors played phone tag back and forth. All we found out at this point is that some of the GI docs are at a loss as to what to do next, but Dr. Carvahlo has a few ideas left. First of all, MJ’s pancreatic enzymes are “off” and that is why they ran more blood work today. Carvahlo’s plan is to do a CAT Scan to find the hiding culprit.
Today MJ spent the day sleeping, refluxing, and wanting to throw up. The nauseous feeling is getting worse, to the point where Zofran helps for 2 hrs and then she needs Phenegran 2 hrs later, alternating them every 4 hrs. She has been draining more bile and stuff out her stomach so who knows what is going on. MJ needed a vent change tonight. All of a sudden she said she needed more air and wasn’t feeling like she was getting enough. We increased her volume and she feels better, in that aspect.
Other than that, not much medical happened today. Michelle W. stopped by with a delicious dinner that we shared with our nurses tonight along with gifts from Madison and family. Everyone loved the mug and the stethoscope cover (we hooked it on ours right away). MJ was wearing a bandaid on her lips tonight to give the night staff a kiss good night. Pictures to come later!!! After Michelle left, Jean and Katie stopped by from WSU with paperwork I requested. Special thanks to the special popcorn donors. I will be eating wonderful snacks soon!! I love you guys, you know my weakness!!! Special thanks also the Honeyman Family for the wonderful lotions. MJ enjoyed her massage. Special thanks to the Salus family for the great picture and the DVD. We will be watching it soon!
On a side note, MJ was interviewed awhile ago for an article about NIV masks. Ironically, the article came out this week in Quest magazine, just as MJ’s switched from NIV to trach. Kind of funny, don’t ya think!!??!! If you want to see it, go to http://www.mdaquest-digital.com/mdaquest/20080304/?u1=texterity and go to page 28.
That is all for tonight. Hopefully we will find the hidden culprit tomorrow or at least be one step closer to the answer.
Monday, March 3, 2008 11:46 PM CST
Hi everyone:
Today was anything but dull and boring. Everyone let us sleep in this morning, so we are very thankful. Once MJ woke up, the fun began, NOT! Two residents came in to check on MJ right away and talked about the Erythromycin and if it was working or not. We haven’t really noticed a difference as of yet, but what we did notice was yesterday, when changing, we turn the food off and forgot to turn it back on when done, so MJ was without Tolerex for over an hour, just getting TPN. During that time, her fever went down, her nausea went away, and she felt pretty good. Once back on, everything started up again.
I did get checked off on trach tie changes. Got hints how to do it independently so it was successful! After the change, the tests began. First of all we discussed the blood work from yesterday. The sputum sample, the blood cultures, and chest X-ray all were normal. The regular blood work came back a little screwy but that has been the norm since we got here. Today, potassium, nitrogen, creatinine, monocytes, RBC, hemoglobin, hemocrit, albumin, magnesium and calcium were low while glucose, chloride, and platlets levels were high. Yesterday morning, MJ’s blood sugar was 189, last night it was at 134, and this morning it was 105, so we are thinking that the first one was an error. This morning, MJ’s PICC line was occluded after saline fed the floor, not MJ. IV therapy brought down the clot buster and got it moving easily. Dr. Carvahlo called over and talked to the residents who ordered a chest X-ray and a bowel X-ray. Of course on the bowel X-ray, nothing could be seen as to which tube was where, so radioactive dye was ordered with another set of X-rays. Then came the difficult decision of where to do it and what to use and if it could be done at bedside. I suggested calling Dr. Ey, but she wasn’t in yet. Dr. Greene okayed the bedside study using the “gourmet” dye due to MJ’s severe reaction to the radioactivity in most of their dyes. So, of course, not all the X-rays were done at the same time, the techs came up three times in about an hour span of time. Blood work was also ordered to check MJ’s pancreas levels and function. Unfortunately, blood wasn’t being cooperative and refused to come out, so MJ got stuck. As a joke, I suggested Heparin, since MJ was missing it, so they did it and they were able to get blood this evening. Hooray!!! Dr. Mueller came by around 5pm and chatted with us. MJ has some wheezing in both lungs, ordered the hypertonic saline to start again today – which it did and discussed possibly starting up on the 3 day maintenance Z-pack drug therapy weekly. We aren’t starting it yet, but it might be starting sooner than later. Mueller unofficially diagnosed MJ as having wussy intestines, since they just aren’t tolerating much these days. Based on our observations of time off feeds, he decreased the rate back down to 10cc/hr and adjusted the TPN and started MJ back on some lipids. On a good note, MJ’s triglyceride level is back down to a nice low normal number. In the next day or so, MJ will be getting a Bivona trach to try to see if it minimizes the reflux and choking spells that occur during movement. To end the day, a urine culture was run to see if they could find the source of the infection.
That was pretty much our day in a nutshell. Lots of tests but very little info learned. Special thanks to Nana Candi and the Takacs clan for the gift card and pictures. MJ isn’t sure what she will get, but I’m sure it will be super cool. Special thanks also to the Kelley family for the gorgeous flowers. They put the flowers in a yellow smiley face mug, so the flowers almost look like hair, so it is way too cute!!! Special thanks to Sophia and family for dinner. The delivery guy kept telling us that they were from Sophia who loves us!! LOL! We love you too Sophia!! Thanks for the cheesecake surprise. Thanks for all the email cards today, MJ loves reading them in the morning and evening. Thanks everyone!!!
Sunday, March 2, 2008 11:46 PM CST
Hi everyone!
Today was a long day. MJ woke up with a definite rattle in her lungs but after early morning coughing, we got most of it out. We think it was from the refluxing yesterday.
This morning was started off by more refluxing and more coughing and such. MJ is still on 1L of oxygen to maintain sats at 96, so there is something going on somewhere. Anyway, it was a long day, full of refluxing while sitting upright, blood tests, a chest xray, and discussion of meds. Reglan was suggested again, but since we tried that last week and MJ had serious muscle tremors in her toes, hands and face it was agreed that that med was a no go! We did stop Carafate, since clamping the gtube seemed to increase the pressure from her stomach, causing more reflux, and starting Erythromycin as a motility agent directly into her J tube to see how that works. This evening, MJ spiked a temp and blood work was ordered – directly out of the PICC line and through a vein. UGH! MJ once again became a human pin cushion. Thankfully, the tech sent up to take blood got enough on the first try in about a minutes time. Amazing!! Another X-ray was taken and MJ was ordered to sit up and stay there….so MJ is sleeping sitting up at a 35 degree angle. MJ’s Zofran was changed to every 4 hours at her home dose instead of the double dose so that is helping her stomach, and her nubain can also be given every 4 so right now we are trying to keep MJ as comfortable as possible to minimize aspiration pneumonia. We did complete more of our training tonight. I, myself, haven’t been checked off on much since I just do it and forget to have someone watch me. UGH.
GJ, Aunt Jill, Zach and Peter came down to visit today. GJ just got back from Florida yesterday, so she had to come see for herself that MJ was okay. We laughed and laughed and had a good time. Not much else happened today since MJ slept off and on. Until tomorrow, big hugs to everyone and prayers for all the kids who are also sick too!
For those who have asked, the website to email MJ at the hospital is: http://www.childrensdayton.org/Patient_and_Visitor_Info/Email_A_Patient/index.html
Sunday, March 2, 2008 0:09 AM CST
Hi everyone:
A pretty quiet day today. Weekends are a good thing, you get a break from most of the doctors and tests.
I ran back to the apartment to box up 7 blankets to send out later and take a shower. While I was gone, MJ met her new resident who according to MJ, has bad hair. MJ describes her as rolling out of bed and that she hadn’t brushed her hair in forever! She was very quiet but asked lots of questions…hopefully, it won’t take too much effort to whip her into shape. Dr. Mueller also came up and agreed with Dr. Carvahlo’s plan of action in getting MJ’s GI system to start functioning. He came in and uncuffed MJ and let her talk and then cuffed her right away so she would stop. What a kidder he is and we love him for it.
Today, MJ had more reflux. This afternoon, she refluxed while sitting up and doing nothing and this time it came up into her throat. Before reflux only occurred while she was laying down and we were doing care and bumped her trach. Obviously, the carafate isn’t doing anything and MJ definitely needs a higher dose of Nexium. Sigh! Tonight at 10, MJ had some major reflux. We have a call in to Carvahlo to see what else we can do, but calling on a Saturday night, who knows when he will call back. We ended up having to turn on oxygen to bleed through her vent as her sats were 92 to 94. We are hoping for a quiet and calm night!!
Tim and Betsy went back to our apartment and were doing our laundry and helping get the apartment ready for our return, whenever that will be.
Not much else has happened today. Special thanks for the cards that were waiting at the apartment for when I picked them up. Special thanks to Jimmy and Lorraine for my delicious dinner. It was wonderful! Until tomorrow, big hugs!
Friday, February 29, 2008 11:06 PM CST
Hi everyone:
Today was another down day. We did a sputum sample and chest X-ray due to the fact that MJ is coughing up thick plugs during the night, so thick they we clogging up the catheters. Yuck!
So this morning was pretty traumatic. Abby came in and wanted to increase feeds, MJ said her famous answer, “LATER!” and we got ready to change MJ. We got her changed and coughed and as we were done she started to cough again and then started refluxing and trying to throw up. MJ has a Nissen that is to prevent reflux and vomiting, but it was not working this morning. I quick grabbed Abby and said that we wanted to see Dr. Carvahlo which was quickly agreed to. Carvahlo arrived as X-ray did, so Carvahlo got top priority. Carvahlo listened to MJ and her concerns and ours and then listened to her belly. His main concern right now is to prevent more reflux and then get her belly moving. His plan was to start Carafate to coat her stomach, so if she does reflux, she doesn’t get heartburn and hook her belly to low suction pressure to help drain it. The suction was not working so they called the resident who agreed to let MJ do drain to gravity since she gets more out. Carvahlo listened to MJ’s belly and could tell that her motility was super slow and to stay at 20cc/hr for the weekend. He will come by on Monday to listen and if she is still slow we will start a low dose antibiotic to stimulate movement.
Dr. Fink came by and was pressuring MJ into getting up in her chair. I asked how we were to get MJ up hooked up to suction, and he didn’t say anything except “GET UP!” We ignored him and said, whatever. LOL Obviously the two disciplines don’t listen to each other!! LOL! We hung out the rest of the day, trying to get MJ to sit up more in bed, to help prevent reflux. MJ is still running a fever but not sure where. Have to wait for the culture to come back along with Xray. MJ is getting some good meds to help control the nauseous feeling and pain meds for the arm pain so she was okay today, just very mellow.
We did do a trial with the trach uncuffed. She lasted an hour before she got a sore throat. She was able to talk pretty normal and did fine. Never desatted, just was tired from the refluxing, meds and overall blah feeling. This weekend, we are going to be pretty low key to let her body try to recover from everything and not worry about getting up.
Special thanks to MJ’s Aunt Laura for the balloons and flowers. They really brightened up MJ’s day to see the daisies. Special thanks to the Fisher family for dinner. We really enjoyed it, so thank you very much.
Thursday, February 28, 2008 11:49 PM CST
Hi everyone
Day 31 is done and things are still moving along slowly. MJ is making her own rules and setting her own path and charting her own way. Who can stop the queen from making her own way.
Betsy arrived today and is being taught trach care. She is already proficient in suctioning. Today I passed trach tie changing so we are another step closer.
This morning we increased the feeds to 20 cc/hr and she has had a lot more drainage out her Gtube (stomach) than usual. Some looks like Tolerex but some is yellow, some is reddish brown and some is bile, so not sure what is going on there. Needless to say, we didn’t increase it like they wanted us to again.
Today was the last dose of the antibiotic for the ear infection. Since they stopped it, MJ’s fever has gone up, it has kept going up while on the 3 days of rocephrin. We are in watch mode to see what happens next.
Getting up in the sling proved to be too stressful. Anytime we move MJ to her side or like today, it sets off major coughing spells and choking. The sling proved to be too much…we got her off the bed for about 10 min but it was stressful. After laying down, MJ was very shocky, her temp dropped and spiked, she had violent shakes and shivers, and downright miserable.
We are trying again tomorrow but I think I have it figured out so we will let you know. Dr. Fink said to bag her while transferring but we tried bagging tonight and MJ gets air hungry and just isn’t getting enough air so I am thinking it through and figuring it out, so we will let you know.
MJ did get her new foot splints delivered today and got a finger splint made for her pinkie finger. She also went on the computer for about 45 minutes.
Special thanks today to the O’Neills for the little package of goodies and stuffies. MJ loves things like that and loved Colin’s notes. Thanks for the pick me up! Special thanks to Sarah and Stella for dinner and the phone call. Dinner was delicious and the conversation was great. It is always great to hear someone after you have been emailing back and forth for awhile. On a side note, we think the phone to our room isn’t working…so if you need to get a hold of us, our cell phones are on all the time. Big hugs to all!
Thursday, February 28, 2008 0:44 AM CST
Hi everyone:
Today was the big day and MJ did just fine. The surgeon came in and told MJ that he was going to round up everybody and everything and do the change. They are keeping the Shiley low pressure cuff in for 30 days to let everything heal. MJ wasn’t too happy about that. We told him our concerns with leaving the trach tie on for 7 full days and he was upset that it wasn’t changed. We told him that he has to write orders that we can change it, otherwise it won’t get done! We informed him that MJ was able to cough stuff up over the trach and was making noises already, which he was upset that we “deflated” her cuff. He reiterated that with a cuffed trach you can’t talk or make noise over it and that MJ would need a speaking valve or a fenestrated tube, blah blah blah…. This is how well MJ listened to the doctors advice: http://www.our-sma-angels.com/Margaret/Videos/to_talk_or_not_to_talk.htm Anyway, the trach change went well, and there were no problems except MJ aspirated the KY Jelly stuff into her lungs. He added a little too much onto the new trach and MJ has been coughing it out. GROSS!! After that, they wanted MJ to get up in her chair, except with her dose of Nubain and her earlier dose of Zofran, MJ fell asleep from 2pm until about 6pm. With a few moments of awake but mostly asleep.
Feeding issues are the same. Last night MJ had about 20cc of Pepsi, she so wanted the taste of it. This morning, she threw it up along with other stuff. She still feels nauseous so she is getting Zofran all the time. Today we did switch from Pedialyte to Tolerex with just water to see if the food helped. We are still at 15cc and so far so good…still feels like throwing up but not a whole lot has returned so we just keep waiting.
Tomorrow we are going to try the lift and see how it feels on MJ’s trach. Rolling her over causes her to cough and get distressed, so we are working on that. Hopefully the sling will be easier to manage and not cause as many problems.
Other than that, we are learning more things daily. As soon as MJ’s belly starts working we should be ready to go home. Special thanks to Ricky for our wonderful box of treats. I loved my treats and MJ loved her book and wind chime. We hung the wind chime up right away under the TV so MJ can see it all the time. Special thanks to Janis for our box of tasty treats along with the new angel ornament. It is perfect!! Special thanks to Julie J for stopping over for a visit and bringing gifts. MJ loves the dog, since he is so soft and loves the fuzzy socks. Also special thanks to the Pruitts for dinner. It is delicious and we thank you! Thanks for continuing to email MJ via the hospitals emails. That is our special time of the day to read the emails. Big hugs and thanks for all the prayers. To see pictures of the new look, just visit: http://www.our-sma-angels.com/Margaret/trach_pics.htm
Wednesday, February 27, 2008 0:38 AM CST
Hi everyone:
Today was day 30. We have been here for a whole resident rotation…how scary is that!! Hopefully the light at the end of that tunnel will be fast approaching because we are so ready to head home!
Today started off pretty low, everything hurt MJ and she was just emotional. MJ’s right arm hurt so bad that she just couldn’t get comfortable and moving it sent sharp shooting pains everywhere. Her trachtie was annoying her and it was itching so bad along with her earache that you couldn’t get anywhere near either site without MJ yelling in her silent voice. Thankfully, MJ’s resident was able to see her eardrum and that it was red but they also tried to flush her ear to clean out the wax first.
So anyway, to make it less painful, MJ is doing better tonight. Pain meds were given, An antiobiotic was started for her ear infection along with ear drops, nystantin powder was applied on her neck where she has a fungal/yeast infection from the trachties....the first trach change is tomorrow so we will be able to change the ties more often to prevent it from breaking down again. If anyone has suggestions as to what type is the best, please let us know.
Digestion is still running slow. She is still at 15cc/hr but maybe we can go up to 20 tomorrow, depends on that first trach change. MJ needs to be at 85cc/hr for proper hydration so we have a long ways to go – going up 5cc/day. They want to get MJ up in her chair tomorrow after trach change – but that depends on what time the change will occur. Everything is a step by step process. First step will be trying the lift out. The sling tends to push MJ’s head forward, which will hurt the trach and her neck. Our first step is to get MJ in her sling and lifted up. If it hurts too much, we have to call in PT and OT to help troubleshoot. Not sure how much will get done, but we shall try. After getting in the chair then the problem of positioning MJ in relationship to the trach and the tray comes next. All minor stuff that comes first before MJ can attempt to drive off. We also need to work out the DME situation along with nursing. MJ has been approved for 24/7 nursing, but not sure how much we will get. It will be different that is for sure.
Special thanks to Aunt Maureen and Uncle Bob for the video. MJ plans on watching it tomorrow to distract her. Thanks to the Cravens for the herbal wrap. MJ is trying to decide where to wrap it first, since right now, so many places hurt. Thanks to the Fox family for the beautiful cookie bouquet. They are almost too pretty to eat. And a special thanks to the Reeds for our delicious dinner. It is so wonderful not to have to worry about eating the same ole’ food night after night from downstairs and/or being too tired to bother. Thanks!
Tuesday, February 26, 2008 0:13 AM CST
Hi everyone:
Almost a week has passed since the surgery and MJ is doing pretty good. She is making more noises and while using the cough assist could tell me and her day hi. She can occasionally say a word or two while using her vent but pretty good considering she has a cuffed trach.
Let’s see compared to yesterday, her foot looks much better. The red angry streaks are almost gone and so has the swelling, so that healed on its own. MJ’s arm is not happy without the neurontin and we are going to try a small dose of morphine to try to take the edge off without knocking her out completely. MJ’s right ear is hurting now in the ear canal, it hurts to touch it so we will have it checked out again tomorrow. MJ’s belly hasn’t changed much. Thank goodness Tim ran into Dr. Carvahlo this morning as he dropped in to see MJ. MJ was on 25cc/hr of Pedialyte all night and threw up about 10cc/hr. Dr. C didn’t see the point in increasing the amount of her food to increase the amount of her puke, so he ordered that MJ cut back to 15cc and wait till tomorrow and if tolerable, increase it to 20 cc/hr tomorrow. MJ is also refluxing more and we noticed tonight that during the change over to IV meds, one dose of Nexium was left out, so hopefully, tomorrow that will stop. MJ also had a dramatic increase in secretions so we will look into that tomorrow.
Other than that it was an okay day. MJ can attempt to try drinking liquids now. All she wanted, however was ice chips. Small steps is MJ’s motto right now. We did talk about different options for talking and what type of trach MJ will use…as of today, who knows. Special thanks to all the emails through the hospital website. It is fun to see how many come in and what child life has to say. Thanks to Sydney P for MJ’s lovely basket of necessities. She loves the lip gloss and shared a pack of TicTacs with the RT’s today. If they were tired, they would come ask for some. Tonight we taught the RT some valuable lessons in cough assist during RT Treatments. He took notes and MJ let him practice. Teaching lessons 101, MJ style! Special thanks to Janet M for dinner. It was delicious and we thank you.
Sunday, February 24, 2008 11:26 PM CST
Hi all:
Today was an off day for MJ. Digestion all night was pretty good. This morning she was at 15cc/hr of Pedialyte. They put it up to 20cc/hr and she did okay for awhile but got nauseaus and asked for Zofran, which helped. They went to do morning meds through the foot IV and only flushed with saline and MJ screamed in pain (silently of course). That IV was gone! Thank goodness we got the PICC line when we did and thank goodness for TPN. While under the influence of Zofran they went up to 25cc/hr of Pedialyte and MJ just opened her gtube into a cup and about 10cc/hr came out. So, who knows how much is actually being absorbed since she still in puking out her tube.
MJ has had more secretions today, so we are doing IPV treatments along with her other breathing treatments. We are doing DuoNeb every 4 hours, then throw in Pulmicort, Pulmozyme, and Tobi each twice a day, plus 4 IPV treatments during the day equals a lot of breathing time. A few times tonight her high pressure alarm went off so when we removed the vent circuit there was a wad of junk just waiting for us. Tonight’s secretions were nice and thick and sticky, so thick and sticky it plugged the suction machine!
MJ’s IV foot is still hurting her. They called a resident at 6pm (now midnight) and still no one. The site is warm and has red streaks. I guess ER was hit pretty hard tonight, so MJ has to wait. We figured we could just wheel her down to the ER to get seen, would have been quicker. Tonight everything was hurting – stomach, lungs, head, arm (no neurontin) and foot, so MJ asked for morphine to take the edge off. She is sleeping great and hopefully it will help for tomorrow. Tonight we had Nurse Wratched again. She is nice but gets on our nerves. Treats Tim and I like we don’t know anything, gets in the way while we are doing coughing, so we wait until she is with another kid to do MJ’s care. There is this bright light in the room that we put the garbage can in front of it at night time, so it isn’t so dang bright. She comes in and moves it out of the way and we move it back. No one says a word to each other, we just move it.
Well, that was our day. I ran back to the apartment to get mail, take a shower and drop off paper work for our apartment for next year. Special thanks to the Nadeau family for dinner. Hope you had a good day and thanks again. We hope everyone had a great weekend.
Saturday, February 23, 2008 9:56 PM CST
Hi all:
What a day. Of course we seem to have days where you just want to curl back under the covers and hide.
This morning at 8am they needed blood…2 sticks later they had blood. MJ was at this point feeling like a human pin cushion. This afternoon, IV therapy came to take a look for a PICC line. They couldn’t find a vein without one causing serious pain, so Rita went to talk to the doc about a PICC Line. We told Rita if she has a problem with Stark to send him our way and MJ was silently swear at him. LOL!
Dr. Stark agreed and they prepped MJ for it with numbing cream. They came back an hour later and the process began. MJ got some Versid to numb her mind and 2 hours later she had a PICC line. She was covered in blood and needed to be cleaned up. X-Ray came up for a chest Xray placement to verify it. Around 4:30 or so, MJ was acting very sleepy and lethargic. I went to the other side of the bed to get something and stepped in a pile of TPN. Unfortunately, after the PICC line was in, the nurse went to restart the TPN and hooked up the wrong tubing, so the TPN just dripped all onto the floor. UGH!!! SIGH!! MJ’s blood sugar was dropping but we caught it early enough that MJ only slept for 90 minutes.
Foods were then started through the PICC line at full rate so MJ could get caught up early enough. They also started MJ back on Pedialyte. We had to give Reglan and Zofran before we started, and after unclamping her Jtube, the foods are so far, digesting. I will be checking in a few minutes to make sure. MJ is still coughing up lots of stuff through the trach and suctioning. Right now, we have almost everthing learned that we can at this point. We can’t do much else at this point until the trach change takes place on Wednesday.
Special thanks to Lynne D for the wonderful balloon and hippo. She is sooo soft and cuddly. Special thanks also to Karen S for our wonderful dinner. It was delicious. Jill and Zach and Peter came by to visit this afternoon and kept dad company while MJ got her PICC line.
So that was our day in a nutshell. Special thanks to everyone for all the cards and gifts. Big hugs.
Saturday, February 23, 2008 1:20 AM CST
Hi everyone:
Another day and a day closer to the 4 week mark. At times it seems like forever and other times it seems as if we got here.
So, today was an uneventful day but an eventful evening. This morning, MJ gave the official “NO” to J-tube feeds and Reglan. She stayed hooked to her belly bag all day wanting to throw up. This morning, her IV in her right hand blew which didn’t surprise us since it had been 12 days. Just slowed things down a bit since she couldn’t have two meds running in one port at the same time. MJ’s 6am X-Ray showed atelectasis in her lower left lobe, so nebs with percussion are every 4 hours and coughing as needed, at least twice on the hour long sessions and once on the other sessions. The plan that they were/are shooting for is for MJ to be off the vent by next week during the daytime, which I quickly quelled that notion that MJ will be off the vent when MJ is ready to be off the vent. If she isn’t off it for very often, it is okay because she makes her own time line.
Today MJ and I taught Tim how to do suctioning. By evening he was getting much better at getting it down. Today I figured out how to do coughing and suctioning independently since once we are out of here, that is the way it will be. It wasn’t hard at all. We also cleaned her trach and guess what, it is pretty much healed! The wonders of TPN and MJ. We noticed after her Jtube surgery, that TPN and an open incision caused it to heal quickly. Most people can’t believe that it was less than 48 hrs ago.
Tonight however, was a different story. MJ’s other IV was really sore most of the day but looked okay. Tonight at 11pm, MJ’s good IV (left hand – was only in for 3 days) blew and started leaking. They called Annie who came up to insert an IV. Third time is a charm, I guess they say, except if you are talking about IV sticks. On the third try in MJ’s right foot, an IV was finally established at 12:30am. Unfortunately for MJ, it is so tiny that TPN can only run at 50% of normal, so hopefully MJ will be okay in the morning nutrition wise.
Special thanks to the Whalen Family for the wonderful bouquet of fruit. We enjoyed sharing it with the nurses who loved it as much as we did. Thanks to the Takcas Family for the balloon, teddybear, and flowers, and to the O’Neill gang for my Vermont Teddy Bear Good Wishes Fairy, the Miller family from Georgia for dinner, we loved it. It made me laugh. Forgive me if I forgot anyone, it has been a long evening. I also need to say a special thanks to Dani P for always sending me one, two or twenty emails a day on the hospital webste. They really got a kick out of printing today’s messages out! They thought you were very creative!!!
Thursday, February 21, 2008 8:38 PM CST
Hi everyone:
Sorry that I didn’t get an update out last night or earlier today. Last night we went to bed and today was just busy.
MJ was pretty nauseous all day yesterday. We aren’t sure if some of it was from pain or not, but she got a double dose of zofran, some phenegren and finally some morphine before she was comfortable. She tolerated suctioning fairly well and vent treatments last night. She woke up every hour to be suctioned but would fall back asleep quickly.
This morning didn’t start off so well…they pretty much browbeat MJ into letting them start feeds at 5cc/hr even though she felt sick. Well, MJ started feeling sick after a short while and they were stopped. We stopped them even though the docs wanted them to continue. The 5cc/hr were being fed into the J-tube and it all came out her g-tube. Tim yelled at them and they left us alone. Came back a few times trying to get us to start them, but MJ said she wasn’t ready. As soon as we turned off her feeds, she felt better.
This afternoon was busy, but in a good way. Occupational therapy stopped by to help figure out a way for MJ to use her computer with IV’s in to be able to communicate. We got her set up, but she tires quickly. But at least we have options. We also have an alphabet board that I quickly made. MJ mouths a number 1 to 5 and then picks a letter in that row and we spell things out. If she is angry she talks fast without us having a chance at reading her lips. We also have a sign on the TV that has 6 common commands (move, fix, cross, cough, neb, and pound) and then on the other side it says arm or leg.
Dr. Mueller came by to take advantage of MJ being silent to harass her to no end. MJ stuck her tongue out at him and rolled her eyes. She told him to just wait!! LOL!
Next came a physical therapy evaluation along with a manual wheelchair evaluation. PT was impressed by MJ’s lack of contractures in her lower body but agreed that MJ’s foot drop has increased during this hospital stay, so she will be getting foot splints soon! We went through the process to finally get a manual wheelchair. Everything was picked out and the process begins. We decided to take advantage of her being inpatient to get everything going!!
During this time while PT was here, RT (respiratory therapy) came in and MJ asked if she could start to cough. Pat got the cough assist set up while Lorraine did a breathing treatment. MJ coughed with her machine and we got lots out, so much so that it plugged the in/ex machine tubing! After she felt clearer Pat got MJ’s home vent set up to the new settings and after PT left, MJ was switched over to her vent from the hospital vent. The switch went well, we had to turn down the PEEP a bit but she did fine. They checked her blood levels again (they were checked at 6am too) and had to turn down her pressure support some. MJ will have her blood levels and another X-Ray again at 6am. UGH!
Anyway, that was our excitement for the day. We will try feeds again tomorrow morning along with some Reglan to see how it goes. Thank goodness for TPN so MJ isn’t losing strength. Special thanks today to the George/Dutzy/Myrick/Capen/Bear for the candy, bear and balloons. The nurses loved sharing them with us. Thanks to David for the bunny and balloons. MJ loves how soft the bunny is. Special thanks to Vivianna and Kate Madera for my get well bear. Special thanks to Dylan and the Long Island Chapter of FSMA for my hugs bouquet of balloons. My room has now been dubbed the annex of the gift shop since I have so many but they sure do brighten up a room. Special thanks to Tiffany for bringing homemade food over, it was delicious and to the St. Onge family for a wonderful salads. At least MJ doesn’t have a craving for any food otherwise she would be jealous that she can’t eat.
As it stands right now, everything will be left as is until Wednesday when the surgeons come to change her trach. Right now, most of the trach care has been taught, except the ties and trach insertion. Today we were taught how to clean the site. Tim hasn’t done suctioning yet per MJ’s request, but I’ve been doing it all along. A couple of times, the nurses/RT have done it but mostly I am doing it for now. We are just hanging out keeping MJ comfortable until she can start moving around, eating and talking. Thanks again for all the get well notes, MJ is keeping them busy printing them out. Thanks.
Wednesday, February 20, 2008 11:16 AM CST
Hi everyone:
MJ had a pretty good night. She had a high heart rate for quite awhile last night and didn’t really get to sleep until after 1:30am. She slept well until the surgery resident came in and woke her up at 6am to ask if she had any questions. She didn’t really sleep after that. At 7am, they came in and gave her Afrin drops in her nose and a double dose of Robinul to dry out secretions for an easier intubation. Guess what, the Robinul worked really well. She was feeling quite like a prune when she went in for surgery. Oh, in case you were wondering, MJ isn’t pregnant!!!
They took her back at 8:45 and Dr. Goodwin, the surgeon came to see us at 9:50. We have switched rooms, MJ is in IMCU. WE got a double room with only MJ in it. So we have a whole extra side to spread out.
MJ is in Room 287a. If you need the number, please let us know. We do have our cell phones on. We had to move because there was a bus accident, but so far we are happy and on the trach training wing.
Anyway, MJ was out of surgery at 10am and they brought her to her new room at 10:30. She is pretty much awake and doing well. Had a bit of nausea so she got a dose of Zofran and is mouthing words as to what we need. She has a Shiley 6.0 low pressure cuff for right now. She has been suctioned twice but her lungs sound great. Isn’t used to the pressure yet since it is different but she is looking good. She is already on room air and her breath rate, per the ventilator, is down from 20 to 15 breaths a minute. She is already smiling and sticking her tongue out at us. If we guess wrong as to what she wants she rolls her eyes at us!
I will try to send another update out tonight, but MJ is a trooper and has pulled through this first stage quickly! Special thanks to MJ’s special froggy buddy Roman and his family for the wonderful frog and balloon. It came as she was coming back so we showed it to her right away. She got the biggest smile when we showed her. Also special thanks to everyone who flooded the hospital’s computer system. Child life came down with a whole stack of papers. That was just this mornings. We haven’t started reading them yet but we will now that she is starting to get back to her feisty self. Keep them coming, she loves them.
Tuesday, February 19, 2008 10:56 PM CST
Hi all;
Not much happened today. Pulmonology was not happy that I ordered TPN and a PICC line and tried to talk us out of TPN saying MJ would “only” be without food for a minimum of 18 hours. They also cancelled the PICC line placement and we weren’t informed until it was too late. We are not happy about that one. So here we are at 11pm trying to get a new line on MJ that is bigger that can handle the TPN. We will be discussing this with Mueller when we see him. MJ is such a trooper. Her heart rate was high all day being brave. She is refusing to show emotion but that heart rate is giving her away.
Surgery is scheduled to come get MJ around 8:30. From start to finish, it will be 4 to 5 hours with the IV, intubation, the actual surgery and recovery. I will try to update as soon as I can, so bear with us. LOL! The after care is recovery for one week and next Wednesday, surgery will come and change the trach for the first time and then Tim and I will get major training. As soon as we pass all of the requirements, MJ will be discharged. They think 2 to 5 days as long as we have no speed bumps.
At midnight MJ will start TPN. At 7am, they will start pre-op meds so by 8:30 everything will be ready to go. Please pray for an easy intubation and a quick surgery but successful one and a quick and easy recovery. We will do updates as soon as we can.
Special thanks to the Foley’s for the gift card…they make it easy so we don’t have to carry cash around. We love you and miss you! Thanks to Clara for the lovely food basket. We shared with the nurses too and they loved what we shared. Everyone really LOVED MJ today! Also thanks to the Craven family for dinner tonight. MJ loved her last meal of lots of cheese and her favorite bread! Right now, we don’t really need anything. If you want to send MJ emails on the hospital website for them to print out, please do. If we get them on the website they bring them down and MJ can read them. Please visit: http://www.childrensdayton.org/Patient_and_Visitor_Info/Email_A_Patient/index.html Just add your name and a message in the box.
On a side note, MJ got a bigger IV inserted but the resident came in and said they need blood for a test…are you ready…they need to make sure MJ is not pregnant!!! We are all laughing that MJ is getting her first pregnancy test! All you can do is laugh, so IV therapy is going to draw blood to make sure she is not pregnant
Monday, February 18, 2008 7:52 PM CST
Hi everyone:
So, our meeting went well. It was Dr. Mueller, Abby, the pulmonary social worker, and the current nurse along with us. It was in our room, so they all came to the queen!
So we sat down and discussed what options are available as of today. Right now, there is one and only one, unless MJ wants to stay in the hospital in bed forever. So, if you haven’t guessed by now, MJ is going to have surgery on Wednesday morning to get a tracheostomy. MJ’s airway is collapsing. Whether the collapsing is permanent or temporary it is a moot point as MJ wants to go home and get out of the hospital. MJ will be getting a PICC line started tomorrow morning and will start TPN at midnight tomorrow. They are already researching which drugs she can get through IV and what meds need to be ordered. I told them right after surgery did their consult that we needed a PICC line and TPN ordered and they did it, no questions asked.
This morning and afternoon were good. MJ didn’t get up so we had no worries about her not breathing. We just hung out and did nothing in anticipation of our meeting. MJ has thrush again, they stopped the Fluconozole Saturday and she got thrush yesterday. She was started on Diflucan tonight. So that is what is going on and in case you are wondering, we are okay with it. MJ went into the meeting expecting this to be the answer so she was ready. For all of you or your kids that have traches, Dr. Mueller wants to know what kind you have and whether you have an inner and outer cannula or what? MJ’s anticipated stay is an additional two weeks minimum. Tim is staying and will be trained as well as Betsy too.
Special thanks are going out to Jenna and Mary for the delicious bouquet. We shared with our favorite nurses and everyone thanks you for not making them fat. Special thanks also to my favorite LogiBear and Shelle and Chris for getting us dinner tonight. It was wonderful and MJ sure loved her brownie (she held out on eating hospital ice cream – just too nasty).
Thanks for being along for the ride with us and helping us at all times and just being there if we need to talk or to vent or whatever. MJ is doing fine, just a tad nervous but hanging in there.
Sunday, February 17, 2008 7:53 PM CST
Hi everyone:
Early, but short update tonight. Today we really didn’t do anything much today.
The nurses let MJ sleep in, but I woke her up at 10am to cough her after her breathing treatments. Dr. Royce came in and said that the care meeting for MJ will be at 5pm tomorrow. Royce agreed that we need to figure out a plan so that MJ can safely be up and about. He didn’t suggest the oral airway which was good as we were going to ask him to try it on himself first. The funniest thing was he asked about MJ’s desatting and then asked if she had quit breathing last night. I told him that the monitor was set off twice for apnea as MJ wasn’t breathing with the machine. The nurses came running in and wondered why I wasn’t doing anything. I said she was breathing but the machine wasn’t picking up on it even though the machine was showing a flat line. I told the nurse to listen and he said, “She is breathing!” So when I told Royce he said, “Well, you have to listen and look at the patient, not the machine!” We all almost burst out laughing at that statement since Tuesday we were trying to tell him the same thing.
MJ didn’t have to get up today. They ran out of ideas to try to help her get through this, so she opted to stay down all day. So, she had an awesome day. No desats, did breathing treatments every 3 hours, watched movies all day (Pixar’s Short Films, Hairspray and others on TV), and took it easy! Thanks to the Sykora Family for the wonderful dinner. I think we ate too much! We will update tomorrow night once we have a plan of action.
Saturday, February 16, 2008 8:07 PM CST
Hi again,
Tomorrow is day 21 and still counting. Today was a down day, which we needed. We got to sleep in and we only got MJ once today.
Dr. Royce came in and admitted to MJ that “you were right and I was wrong” and that he didn’t believe she was actually not breathing. Umm, duh! Why would you even want to fake that!?!? The plan for today was to get MJ up and let her have an episode or two…not hard to do, unfortunately. When she said she was feeling it come on, Greg (the wonderful RT from yesterday) was to insert the oral airway and see if it would open her airway. Greg said he would do the nasal one. So, today, when MJ had her first episode, Greg shoved the green rubber tube in MJ’s nose. It didn’t work so I quickly coughed her. Ten minutes later, she had another one but this time, MJ was trying Dr. Schroth’s recommendation of sniffing, but sniffed so hard that she collapsed her nasal airway. So we stopped there. MJ took a nap and I ran to the apartment and grocery store.
That is about all for today. I’m not sure what plan of torture we are doing tomorrow but time will tell. Hopefully nothing traumatic and MJ can have a restful day. Monday is the care meeting to discuss a plan. We aren’t sure what time, but we will let you know when we find out. Thanks Kim J for the wonderful dinner. We were well fed and appreciate it.
Friday, February 15, 2008 11:29 PM CST
Hi everyone:
First of all, we are still here. I guess through divine intervention and many other factors, Dr. Royce saw the light. This morning he came in and was a different person (MJ thinks he is bipolar, LOL). He said it was our decision to decide when MJ was leaving.
I requested blood work to double check her labs that have been screwy the whole time we have been here and MJ is right on target for the first time in forever. We got a new ambu bag since ours wasn’t working and two others required oxygen to use them. MJ’s dad, Tim arrived around noon to witness another one of MJ’s episodes and then a third one, all occurring right in a row. They wanted her to stay up after her first one to see what would happen, which she had another one and then as we were getting her into bed, while in midair, she quit breathing again (I must say it is interesting trying to get an airway while she is swinging in the air!) Dr. Royce kept saying that MJ wasn’t having episodes since her numbers didn’t drop which irritated everyone.
This afternoon, they did call and leave a message for Dr. Schroth to help us figure it out. They wanted to rule out a seizure disorder so an EEG was ordered. Of course, being MJ, it is never easy. While she was laying in bed, they attached all the wires and leads. Then we had to try to get MJ up out of bed, turned around, and put in her chair without pulling any of the multitude of wires. While in her chair we waited. Royce believed that at the beginning of the episode, we should start an IPV treatment to open her airway and if needed, put in a plastic airway into MJ to see if it would help. I was to let the IPV work and not cough. So, MJ said one was coming on, Greg started the IPV and after a few seconds, MJ was not breathing, the vent was high alarming, she was trying to breathe but not getting air, and tears were streaming down her face. I finally asked Greg if I could cough her and I did and back she came. Thank God Greg was there to see it and document it for us. He did not insert an oral airway since they are extremely painful to do to a person, especially while awake. While they were disconnecting the leads to MJ’s head, on came another one. We are so thankful that the cough assist is able to open her airway effectively.
So, for now, we are hanging out all weekend, getting up twice a day to see if they will go away and just wait and breath. Monday we will have a conference with the doctors to determine a plan of action. Right now, everyone is at a loss as to what to do next but hopefully by Monday we will have an answer! Thanks to the Kay family for dinner tonight, it was delicious. Thanks Aunt Jill for delivering Tim to MJ so we could get the doctors to listen. Thanks to Dr. Schroth for being there for us last night and always being there for anyone.
Friday, February 15, 2008 0:12 AM CST
Hi everyone:
We didn’t go home today although Dr. Royce was ready to kick us out.
I asked a few questions from him about the events going on and he said we should go home and figure them out. Basically we had a disagreement this afternoon as he wanted MJ out by 2pm despite voicing our concerns about the episodes she is having in her chair. This morning was very scary and I got angry at the response of the doctor. MJ was up in her chair and after 20 minutes, she lost the spark in her eyes and was not really there…it was as if what makes MJ who she was, was gone plus her lips had a tinge of blue. I did what I needed to do and cough her to get her back but the nurses said Royce wants you to wait until the monitor goes off before helping. I refused and coughed her and helped her but it really takes a toll on her, she usually is out of it for the next 90 min or so.
Dr. Royce said that since the monitors did not go off, he is considering it a “non-death event” meaning that there isn’t a chance that she would die from it at any time. I did not like that because he is not God and he can not make a statement that she will not die because the fact is, no one knows.
So, the scoop is this. Royce allowed us to stay tonight, Tim is flying out in the morning, and Tim and I will transport MJ home tomorrow afternoon. I refused to go today without any support what-so-ever in the van with me. The plan is to send MJ home on a halter monitor and to keep her on her oximeter and write down when an event happens.
I know when we get home, we will be okay but we are both a bit nervous and scared but we have the support and prayers from everyone here and we have already been in contact with Dr. Schroth who is so wonderful and is willing to help despite us not being her patient. Thanks to the Miller Family for dinner and the extra surprises you ordered for us. We both loved them. Until later, big hugs and thanks for all the prayers.
Friday, February 15, 2008 0:10 AM CST
Hi everyone:
We didn’t go home today although Dr. Royce was ready to kick us out.
I asked a few questions from him about the events going on and he said we should go home and figure them out. Basically we had a disagreement this afternoon as he wanted MJ out by 2pm despite voicing our concerns about the episodes she is having in her chair. This morning was very scary and I got angry at the response of the doctor. MJ was up in her chair and after 20 minutes, she lost the spark in her eyes and was not really there…it was as if what makes MJ who she was, was gone plus her lips had a tinge of blue. I did what I needed to do and cough her to get her back but the nurses said Royce wants you to wait until the monitor goes off before helping. I refused and coughed her and helped her but it really takes a toll on her, she usually is out of it for the next 90 min or so.
Dr. Royce said that since the monitors did not go off, he is considering it a “non-death event” meaning that there isn’t a chance that she would die from it at any time. I did not like that because he is not God and he can not make a statement that she will not die because the fact is, no one knows.
So, the scoop is this. Royce allowed us to stay tonight, Tim is flying out in the morning, and Tim and I will transport MJ home tomorrow afternoon. I refused to go today without any support what-so-ever in the van with me. The plan is to send MJ home on a halter monitor and to keep her on her oximeter and write down when an event happens.
I know when we get home, we will be okay but we are both a bit nervous and scared but we have the support and prayers from everyone here and we have already been in contact with Dr. Schroth who is so wonderful and is willing to help despite us not being her patient. Thanks to the Miller Family for dinner and the extra surprises you ordered for us. We both loved them. Until later, big hugs and thanks for all the prayers.
Thursday, February 14, 2008 9:19 AM CST
Hi everyone:
Sorry no update last night, just tired and didn’t have the energy to type anything out.
Since I sent out the update yesterday morning about not going home, things were a tad stressful yesterday afternoon. The doctors wanted to use the bed function to sit MJ up (her bed here sits up like a chair). So around one, we started sitting her up. She didn’t get very far because her back hurt due to her rods so back she went and MJ said she would rather get up in her chair. On the way flat, MJ complained of feeling “weird” and a few minutes later she got a panicked look and quit breathing. We quickly whipped off her mask and coughed and a big huge plug came out. MJ rested for a while and quit breathing again, while on her vent, while doing nothing. Not really sure what happened but it wasn’t fun. It really stressed MJ for a while. She also had a bronchospasm during the second episode so an X-Ray was ordered again, which was good. MJ slept most of the rest of the afternoon and was tired most of the evening.
Today, after breakfast, MJ is getting back up in her chair again. We will be hooking her up to their monitor with longer leads and see what happens. No one is really sure of anything right now or what the game plan is, we are waiting on the docs to come, but right now, it is status quo and a day by day basis.
Special thanks to the Lockwoods for dinner last night.
Tuesday, February 12, 2008 9:57 PM CST
Hi everyone:
So, day 15 and the end is near. Plans are for us to go home tomorrow as long as MJ “behaves” tonight and does not throw any curve balls.
Today was an okay day. Had a few minor issues but a couple have worked themselves out while others are just there. MJ does have a sinus infection and was started on Augmentin for two weeks. We are also having trouble getting back onto a schedule for bowels, but the doctor today seems to think it was under control, but we are working on it and will fix it once we get home. MJ also had her first brady-type issue today. She was sitting up in her chair for an hour when her heart rate dropped about 35 beats, she turned white, got chest pain, and turned ice cold. It came up right away and then she started desatting some. After all that she slept for two hours. Not really sure what set it off but she is okay.
Tomorrow before we go home, MJ has to register for classes for March. Hard to believe that this quarter is almost over. MJ will probably be dropping a class this quarter – the one where she has to volunteer way to many hours. She doesn’t want to risk getting sick again, since there is another “new” flu going around. MJ is very nervous about going back and getting back into the germs!
Last night I forgot to add a special thanks to the Vickers Family for dinner. MJ sure enjoyed her first food since her tummy bug, so she was happy! Thanks to Candy B for the gift of valentines. We handed them out to her favorite staff with the candy too in exchange for a picture of them with MJ!! LOL!! Bribery at its best! Hopefully, tomorrow’s update will be from home! We are praying for a slow but quiet night!
Tuesday, February 12, 2008 0:34 AM CST
What a fun filled day in PICU, NOT! It was a bad day all around, nothing too traumatic but just ugh!
Last night MJ's feeding tube got kinked and didn't receive any food at all so she is having some sugar issues this morning. We started her back on her foods at half strength and she got an IV. Her blood sugar right after 2 hours was 99 but she was still feeling floaty and fuzzy and very sleepy. Her tummy issues seem to be over. She was able to get her oral morning meds and did eat a little bit of breakfast before falling back asleep.
MJ pretty much slept the day away. She finally woke up around 3pm and was back to her normal cheery self. She wouldn’t really wake up and just slept and slept. We checked her blood sugar bedtime and she was back to around her baseline in the 110’s.
This evening MJ got up for a few minutes in her sling without her vent and did great. We were able to weigh her tonight and she has lost about 6 pounds since her October hospital stay. That was exciting.
MJ has been having more secretions yesterday and today and MJ believes she is getting a sinus infection. It seems to be the case since tonight she is desatting into the 80’s and did hit 79. She is on 2L of oxygen bled into her vent and seems to be holding her own. Until then, big hugs!!
Sunday, February 10, 2008 9:56 PM CST
Hi everyone:
Today was a quiet day and so far the night it too. We slept in this morning and enjoyed it.
Aunt Jill came down so I could run back to the apartment. I ran over after we got up and took some stuff back and got the mail and brought back the few things we ran out of. This morning, they went to run MJ’s Zantac through her IV when it blew again. Darn thing only lasted about 12 hours. Talked to Dr. Stark who wrote to hold off on tummy meds today and do IV’s to give MJ’s stomach a rest since most of her drugs are alcohol based. So MJ ate 11 or 12 oyster crackers all day (thanks Sue and Karen) and tonight did eat about 2 ounces of applesauce. So far everything has stayed down and no more trouble (***knocking on wood). She has been running a fever off and on all afternoon. MJ did get her IV re-started on the first try again. She is currently getting her meds as I type. MJ hopes that her tummy accepts the drugs tomorrow because her arm is starting to bug her.
Tomorrow our plans are to start regular drugs in the morning and see how it goes. We are going to get up in the sling first to see how she does in a different position and then later get up in her chair. Not sure if we will make it home tomorrow, but we are okay with going home Tuesday. They just want to make sure that MJ can process her meds before we head home. We just hope we can get out of here before MJ catches anything else. I guess, fortunately for us, most every kid has influenza A so the chances are slim that MJ would catch it again. Although, according to Dr. Mueller there are different versions of type A influenza this year so we hope to avoid all the other versions out there. We do not want to make another visit here.
I guess that is it for tonight. We hope to have a good sleep with minimal interruptions. Until tomorrow, good night!
Sunday, February 10, 2008 0:16 AM CST
Hi everyone:
It was a quiet day here today. MJ has a stomach virus and spent the day sleeping and throwing up. Both MJ and I slept as we were up all night. Despite the max dose of Zofran, MJ would wake up every 30 to 45 minutes wanting to throw up out her tube. It was a long night. This morning they switched the Zofran to Phenergan. It knocked MJ out for a nap and stopped the urge to throw up.
After a dose of Phenergan, Zantac, and Nexium, MJ’s IV blew. It had been in for 13 days, so we consider that a record for MJ. It took IV therapy 3 hours to come down and only 15 minutes to get a new one in. It was wonderful, the nurse came in, looked at MJ’s right hand and in it went. No digging, no prodding, just right in. It is nice to have such great staff here that you don’t have to sweat it.
Other than that, not much else happened. MJ’s lungs are still doing good, we just have to get over this tummy virus and we are good to go. Thanks Sykora’s for feeding me tonight!! You are the best.
Friday, February 8, 2008 10:48 PM CST
Yet another day. Good news and bad news like usual. MJ woke up feeling pretty good despite her night last night.
Her Xray looked better than it ever has and her lungs sound better than Mueller has ever heard them. So, we decided for a Monday discharge if things continue. As long as we keep up with breathing treatments – now every 3 hours, woohoo, everything should be fine.
What we figured out is that MJ had a reaction to the Toradol which set off the series of events that led to MJ to quit breathing. The lingering side effect is that MJ’s tongue itched, her head felt fuzzy, her belly felt off, and she had cold sweats all day. Dr. Mueller had her blood sugar tested (99) and her venous blood gas checked (40).
Unfortunately, around 6pm, MJ started throwing up yet again. We got Zofran right away which let her sleep but she was sleeping and throwing out her tube at the same time. She has finally slowed down on the throwing up but we had to stop all gtube meds and she got her belly meds via IV. They are thinking that it could possible that she picked up a stomach virus here. We shall see how she does tomorrow. She is currently hungry but food commercials make her want to throw up, so who knows. She has been dozing off and on since then.
That is our day in a nut shell. The good thing is that her lungs have healed…now we just have to deal with the belly issue. Hugs and prayers to all those currently fighting this horrible cold and flu season.
Friday, February 8, 2008 1:54 AM CST
Hi everyone:
Yet another late night here in the hospital. MJ just is not liking nights these days and shows us in many different ways.
All day, MJ had been complaining of her ribs hurting, which makes sense since we have been doing CPT for 2 weeks and then last night with puking, but she said it was not that bad that she needed extra drugs. Her lungs finally started sounding better and we were all excited that it seems that the end of the tunnel is approaching.
The blood work after last nights vomiting showed that her sodium is now slightly below normal and potassium went back up to 5.5. Doesn’t make sense but it is MJ that we are talking about. The sodium is more than likely the reason for her pickle cravings. Dr. Mueller told MJ to eat as many pickles as she wants and to drink the juice while she is at it.
So anyway, MJ had a pretty good day. Aunt Jill came down and brought MJ a jar of pickles for the fridge, she got a bath, back rub, and a foot rub. She took a nap and worked on breathing off the vent some. She also actually did some homework.
After dinner, things started getting interesting. The pain in her ribs increased to the point where CPT was becoming painful and coughing was following quickly behind. Thankfully, her bed does percussion and vibration so the bed took over the CPT and we tried to lower pressures on the cough assist some. MJ asked for some pain relief and due to a crisis on the floor, MJ didn’t get it until her pain was pretty severe. She was given Toradol which she has used twice before with no problems. Tonight, however, it caused a reaction. 15 minutes after it was given, via IV, the monitor started alarming for apnea. MJ was not breathing. In the span of less than a minute, with nothing alarming, MJ was having bronchospasms which caused her to breathe harder, which caused her to reflux and stop breathing. A nurse thought the monitor was falsely alarming and went to silence it while I was working on MJ. After yelling at the nurse, more people arrived to help, but it was driving MJ crazy. They kept firing rapid questions at her and she could barely talk. MJ got an Xray and an EKG at midnight (EKG is fine), haven’t heard on the Xray. MJ was given tramadol instead and finally fell asleep at 2am.
An FYI: our cell phones are turned off for now. One kid is on an oscillating vent and all phones must be off. If you need us, the best way to get ahold of us is by email…if not, use the room number to get us. Just remember if you call the room number, it rings very quietly, so email us first. That is it for tonight. Here is hoping for a good night for all.
Thursday, February 7, 2008 0:04 AM CST
Hi everyone:
Wednesday night and here we are. This is how far I got since I started at 9pm and now it is almost 1am and MJ just got down.
Last night MJ was so tired that she required 5L of O2 bled through her vent to maintain sats, but was able to come off in the morning. The day overall was pretty good. MJ sounded the same as the previous days, poor sponge bob can’t figure out what lung to reside in, the right or the left, but is preferring the right. The blood work run yesterday was fine. Sodium was at low of normal and Potassium was fine, although it had dropped from 5.6 to 4.7 since admission. Dietary is working with us to get something started.
I changed MJ’s tubes at noon, I had to have a nurse present in the room with me. The nurses laughed and asked what they were supposed to do if something went wrong. MJ made them hold her hand. MJ was nervous about the J tube but that went the easiest it ever had. Gtube was fine, a little irritated from all the CPT, but okay. The residents also ordered a sputum culture again. They brought it in, told MJ to cough up something for them, and MJ did and they got grossed out by it! LOL!
Now the bad part of the day. We think MJ has developed an allergy to strawberries. I had posted that during the Super Bowl, MJ threw up. Couldn’t really figure out what caused it and just wrote it off to the general state of things. Tonight at 10, we were doing CPT with nebs and MJ wanted her tube vented. I vented her tube and we continued to do that for 2 hours. At first the only thing that came out was strawberries. We had to switch to IV Zofran since we weren’t about to try giving oral meds and the puking needed to stop. The residents did order another blood draw for morning to check her levels after this puking episode. I just do not want her potassium to get too low again after all our hard work since May of last year. Not sure where we are going from here. We will get labs run in the morning and see where we stand and see how MJ feels in the morning.
Tuesday, February 5, 2008 10:21 PM CST
Hello everyone
Happy Tuesday evening. We are hanging in here despite the length of time of our stay. Not much happened today as far as answers but tomorrow should be better.
At 5:45am, we were awoken by radiology for a chest X-ray. The right lung was hazy along the edges, so there was some more change since the other day, but nothing drastic. Around 11:30, an ultrasound was done that showed that there was no cellulitis or an abcess around the J-tube site. Aunt Jill came down again and helped to do some serious CPT on MJ. After talking with the doctors at 2pm and at 7pm, I have been given the green light to change MJ’s Gtube and Jtube in PICU. After the Jtube is placed, an X-ray will be taken to verify the placement. The doctors also ordered blood work done. Since MJ was admitted, she has been craving salty foods and dill pickles. If you know MJ well, her first craving is always sweets, but since admission, she has been ordering pickles daily along with sucking on anything that is salty.
Regarding the lungs, we believe we are passed the smoking cat stage and right now, MJ’s right lung sounds like a wet sponge. Her left lung is sounding tighter but nothing like the right. I am to focus on the right more than the left. For now, we do 5 min with the “magic wand” on the right, 5 min of CPT on the left, and 5 more min on the right with the wand and CPT up top. We are still doing nebs every hour, saline nebs on the odd numbers, and duonebs at the evens. We are still coughing every 15 to 30 minutes and MJ has about 10 to 20 minutes free from her vent depending on the day. When MJ gets tired, she gets a little blue, short of breath, or starts to struggle.
Basically, right now, we just have to wait for the lungs to heal themselves. The right lung received more damage than the left and time and coughing will help.
Tomorrow we will be changing both tubes. Not sure when but it will be done. We will also find out the results of the blood test and see if we need to start an IV with potassium to get MJ back on track. Special thanks to Nurse Pat D for the spa in the box, thanks to Princess Courtney and family for my Queen sign and the candy for Brenda (all the staff are cracking up), and thanks to the Hillston family for our dinner tonight. Everything is greatly appreciated.
Tuesday, February 5, 2008 0:01 AM CST
It is 11:40 pm and it has been a long, but productive day. After lots of CPT while beating to the song “You Can’t Stop the Beat” MJ’s lung finally opened up enough for air to start moving. By the time Dr. Mueller arrived WWAJ and I did a massive dual CPT to the music, 3 nebs and some vanilla pudding! LOL!
So, today, MJ is going to start getting DuoNeb every 2 hrs and saline every 2 hrs, so basically we are doing a breathing treatment every hour. We are coughing before treatment and after treatment and more if needed. The RT’s were pushing to use the percussionaire but I told them I wanted the old “Jackhammer” of the old days. They no longer make them but they brought us the new jackhammer of the future. It is a Vibramatic and it works wonders. (http://www.g5.com/products/vibramatic/ ) We want one for home use. The wand weighs a lot and would probably be dangerous to a little kid because it really packs a punch. We have done three treatments since 6pm and have seen a vast improvement. I am still doing hand CPT on the left side just to keep it moving.
Tomorrow morning, probably around 5:30am, MJ is scheduled for another chest x-ray. We debated about doing another since x-rays never show anything out of the ordinary, but to be on the safe side, they are going to check tomorrow morning after doing nebs every 2 hrs and some hard time CPT. MJ also has an ultrasound scheduled for her Jtube area. It seems like cellulitis (warm to the touch and over the weekend, red streaks) but since she is on heavy duty antibiotics, it seems unlikely, so an ultrasound and GI consult have been ordered. We are also trying to figure out who is to change MJ’s J tube. After the tube change in December, Dr. C wanted the tube changed in Interventional Radiology, Dr. Ey wanted me to do it at home, and Dr. M doesn’t really care who does it as long as MJ stays in PICU! LOL! Hopefully, they can figure it out tomorrow so we can get the tubes changed. (The tubes are fine, it is just time to change them.)
That is about it for now. The stomach ache and vomiting has been gone all day and MJ has been doing better. Thanks to Veronica and Debby for the wonderful wayward balloons, the Foley’s for my rose and the elephant that has been hugging my IV, Lizzy for my wonderful monkey and balloons and for Brenda’s candy, and the Sykora family for our wonderful dinner!!! Also thanks for all the cards and pictures that have been sent. MJ, the nurses, and I have loved looking at the pictures.
Sunday, February 3, 2008 11:47 PM CST
Hello everyone:
Hard to believe we have been here a week…some times it seems like forever, and other times seems like we have been here a month.
Today was an up and down day, that is for sure. MJ woke up feeling pretty good. She was coughing up stuff and had some good air movement and all of a sudden, things changed. Her lungs changed from coarse sounding to wet, she became exhausted, and a fever started up. MJ took two naps today since she didn’t feel well at all. We tried to do homework but that just wasn’t in the cards today.
Right now, MJ has wet lungs, lots of fluid in her right lung even though her left looks worse on XRay, she has a fever and started throwing up about 30 minutes ago. She is watching the Super Bowl, curled up on her side, covered up and waiting to see some cute commercials and great looking buns, and she isn’t looking at hamburger buns. We hope tomorrow is better and hope that sleep will be good tonight.
First of all a special thanks to our balloon donor. This afternoon, we received a bouquet of 6 beautiful balloons but there was no card attached. If you sent the balloons, please let us know so we can at least thank you for them. Thanks to the Jobson Family for the beautiful flowers and balloon, the Kay Family for dinner and the Berry Family for the gift card for the cafeteria.
Saturday, February 2, 2008 8:34 PM CST
Hi everyone,
Another late update, but you know how things go in a hospital. Never a dull moment. For part of the day, it just seems to drag and then you don’t sit down at all! Last night went pretty well. MJ desatted a whole bunch to do moving mucus, so after an hour of hearing the alarms, we used 3 L of oxygen to stabilize her sats and heart rate. She slept well and felt ready to start a new day.
This morning started off slow after a moment of panic. The humidifier chamber had a small crack and also had floaters in it so we asked for a new one. The hospital uses a different set up and did it for us. Of course it wasn’t working and after an hour, MJ was feeling the effects. Thankfully, WWAJ was coming down and could stay with MJ while I went back to the apartment to get a new chamber.
Anyway, MJ sounded pretty good when we woke up, did not lose ground overnight, so that was a big plus. The new resident came in before I left and I asked for clarification on the hypertonic saline since in one week, MJ has been on 3 different doses. She had no answer but promised to find one.
I ran back to the apartment and got new clothes, new chamber, homework (yes that dreaded h word) and pepsi! Had to stop at the Meijers to get Pepsi and some of the juice we use in the tubby food. Yes, I am making the tube food every day and mix it myself with my ingredients. They remembered us from last time and we did not have any problems this time.
Got back to the hospital in time to see Mueller (we are so glad he is on call this week) before he left. For once in her life, we are excited to report that MJ is following the “normal” path of a person who has a Neuromuscular Disease and the influenza. MJ is a little disappointed that she is “normal” or in the words of Mueller, “classic”. Everything she is going through is following a typical path. LOL! The curve balls she was throwing were not curve balls but just mere speed bumps. So, the plan is to wait it out. This type of influenza causes the airways to lose their epithelial lining and the spasms and lovely noises (chain smoking cats) are caused by the lining breaking up and moving around. It just takes a longer period of time to recover. MJ was given full permission to cough as needed but not any extra (like we were coughing for fun???). He agreed with Dr. Stark that blood we can take care of, not breathing we cannot! He ordered meds in case she bleeds again and liked that MJ was eating ice to keep the swelling down. He stopped two meds and told us we will be here until MJ is ready and she will know when that is. She is on her own time clock and one of these days, the airway will be ready to work the correct way. Until then, you know where we will be.
I have to give very special thanks to many people here. I have thanked them, but not publically yet, and since I have time and energy, I will do it tonight. Since Wednesday night, the OKI FSMA Chapter has helped us out tremendously. Each night, a family contacts us to buy or bring us dinner. You don’t realize how much this has helped us and me have the strength to keep pushing. I do not have to worry about when I will be able to eat again and that is a big thing. So thanks to the Lockwoods, the Lockwoods, the Nadeaus and the Pruitts for supplying us with the vital energy we need to get through the day.
Friday, February 1, 2008 11:15 PM CST
Hi everyone:
Two steps forward and one back is the theme of the day. Last night was an interesting night. MJ had a productive cough so we were taking use of that time and coughing stuff out. Around 10pm, while coughing, MJ felt something pop and blood started coming out her nose and mouth. We were not sure at first where it was coming from, but there was a lot! After it stopped, we were able to figure out that it was coming from her nose. We are not exactly sure what happened but best guess is that it is from all the coughing she is doing. They wanted us to stop coughing to let it heal but we compromised…I coughed MJ with the mouthpiece, but it just wasn’t doing the trick, so everything just settled a little deeper.
It was a long night. This morning we have done some aggressive PT and therapies…however (there always is, right) MJ sounds different. They did an X-ray which is the same as Monday, but MJ never really shows anything. They all hear it but they can’t see it. We shall see. She has been coughing up blood all afternoon, and is quite worn out. Leave it to MJ to throw a wrench and do something different. So, anyway, right now we are status quo, coughing tons and then coughing more. One of the head RT’s, came up with a temporary answer to our coughing problem. He brought in a small cough assist mask that we turn upside down and just cough over her mouth and avoid the lungs. It is working and she is bringing up stuff. We are waiting to see the doc since MJ is still coughing up fresh blood. Not sure from where, but needs to be looked at soon. The new residents suggested to cough every 4 hrs so they are calling the doctor instead since we said NO!
Thanks for all the continued prayers. Thanks for all the cards and messages either on MJ’s computer or the hospital computer. Special thanks to Dylan C and his family for Tin Man Bearamy (he is holding MJ’s IV arm up so it doesn’t hurt), to the Reilly and O’Neill Family for our lovely get well basket (MJ ate some crackers for lunch today), Uncle Bob and Aunt Maureen for the lovely flowers and teddy bear, Aunt Me-Me and the CTFSMA Chapter for my lovely Lil’ Wyatt (or should I call him MeMe?). Special thanks to the OKI chapter members who have been getting us dinner every night. It is greatly appreciated! Thanks everyone for everything.
Thursday, January 31, 2008 3:35 PM CST
Sorry, a little later than normal update, but we are doing okay. MJ feels a little better, but each day is another day but doing okay.
Yesterday the docs wanted to cut back on breathing treatments (they did that overnight) and MJ was so dry yesterday morning and tight…so the progress we made Tuesday was gone, so we had to start over again. They also wanted MJ to start taking time off her vent and go without, which I stopped right away, along with getting up in her chair. It was a day of treatments and shaking every 90 minutes. That is what we did all day. We were coughing every 10 to 15 minutes and barely getting anything out. It finally started breaking up around 8pm.
We kept up breathing treatments all night long every 90 minutes and coughed as needed, which was every 30 minutes if we were lucky. This morning, MJ woke up feeling pretty good after treatments. The cats were replaced by pudding (not real pudding, just the sensation) after a couple good sessions of coughing. Yes, MJ feels like she has pudding in her lungs. She tried to rest on her right side for awhile, but had trouble breathing, so we tried a different angle and she slept for about 15 min before gasping as the cats were back. Right now she is watching Oprah while getting ready to start another neb. They want MJ to get up in her chair but I explained why I said no. Right now, it takes about 30 minutes to get MJ up in her chair…during this time, MJ would most likely be off her vent while we moved from bed to chair – in the hallway with germs – and then MJ would be in the hall, needing to be coughed with the machine back in the room. WE would have to lay back down right away and only succeeded in stressing her out. We just move MJ all around.
Thanks everyone for helping out. Aunt Jill has been coming by and rubbing MJ’s feet during her noon IV treatment and bringing us stuff, the OKI chapter for feeding us and being there. Thanks to Kim J for the new cat and a singing balloon, JoJo B and family for the beautiful balloon and gift card, the Kuester Family for the puppy and balloons, Lorraine and Zoe for the plant, bear, and balloon, and the Sykora Family for the cookie bouquet and balloon. The room is extremely colorful and cheery! Thanks everyone else for the positive thoughts and emails and notes through the hospital website. I have been reading them all to MJ but haven’t time to write back to everyone. Thanks again!
Wednesday, January 30, 2008 8:52 AM CST
Another day, a thousand more coughs. MJ is holding her own and is still her cheerful self. Harassing the nurses and doctors despite all the coughing. Every morning she starts the day extremely thick and refers to the junk in her lungs as gravel – oh how she hates gravel. Nothing moves! What she is coughing out is small and thick, so thick that is clogs up the suction catheter. If it sits there, it resembles cement, hence the gravel! After it does start moving, then her chain smoking cat takes residence, but instead of one cat, there are 2 or 3 now. (they are multiplying). Yes, we are bored, but she has named her cats Larry, Darryl, and Darryl!
Some have asked why MJ did not get started on the antivirals to help her. It is believed that the test on Thursday was a false negative and antivirals are most effective the first two days, so that is why those meds were not started. To answer the second question, MJ did get her flu shot when we were here last time – she was scheduled to get one in clinic in October but since she was inpatient, they just gave it to her anyway.
We really have not heard a definite answer as to how long we will be here. One report said 3 – 5 days; while another one said 6 more days and yet another said 8, so we are hoping the 3 to 5. It all depends on when we can get this stuff out and moving a little better.
MJ gets room service daily and feeds me, LOL! The kids get to order at any time during the day and they come up with this computer to take your order and then your meal is delivered quickly. Thanks David for the balloons, Henry’s for the flowers, Totoro’s for the balloon and flowers, and Clara for the flowers and bear. They sure brightened up the room. MJ loves them! Thanks to everyone who has emailed or sent a note via the hospital's website. They remembered MJ from last time and had to visit twice yesterday. Hugs
Tuesday, January 29, 2008 7:24 AM CST
Hi Everyone:
Just a brief update on what is happening here in Ohio. MJ had a pretty miserable weekend. After a call to the doctor yesterday, we decided to take MJ into the ER for evaluation. She sounded pretty rough and decided that she sounded like a chain smoking cat. We were taken back right away in the ER and pushed for a breathing treatment. MJ has influenza, type A. We arrived in the ER at 2:30 and were upstairs at 7’ish.
Anyway, MJ’s lungs were okay, no pneumonia, just coarse sounding with plugs that are abundant. During our time in the ER we were coughing about every 15 min or so. Last night, coughing slowed down some, so MJ slept from 12:30 until 4am when it started all over again. MJ is holding her own and her spirits are good…a bit bummed about being back here and tired of coughing but is doing okay.
We will know more after rounds this morning, but have heard that MJ could be here 2 to 7 days, so your guess is as good as ours. MJ is currently on Timentin IV antibiotic every 6 hours. Other than that, she is on home meds and home feeds.
The address here is:
Dayton Children's Hospital
One Children's Plaza
Dayton, OH 45404-1815
MJ is in room 271. I have my cell phone and we do have a phone directly into our room. If you need it, just drop us an email. Thanks.
Thursday, January 24, 2008 8:00 PM CST
Hi all:
This is Brenda, giving MJ’s end of the week update. Most didn’t know it, but I got a cold last Friday and hated it – like my first bad cold in like 10 years, so I guess I was due. I believe the whole campus has something or another. Monday, MJ had a scratchy throat but nothing else. Tuesday morning she woke up feeling miserable. She just wasn’t herself. She had a couple of mucus plugs on Tuesday and had a couple episodes where her airway collapsed and she quit breathing along with a fever, coughing, bronchospasms, and wheezing. We did many breathing treatments and coughing and chest therapy. Wednesday is MJ’s busy day and was supposed to start volunteering. I called to cancel her volunteering Wednesday morning before class (she will try to start next Wednesday). MJ survived 2 of her 3 classes and was pretty miserable. She came home, took a nap and didn’t even go online. We had trouble coughing since her throat hurt her so much that it felt like pins were trying to come up during treatments. We called Dr. Mueller since nothing was coming out and treatments were becoming painful to MJ. He suggested we come in this morning (Thursday at 8:30am) for an X-ray and visit. He also suggested Theophylline (which Emma had a bad reaction to when she was little) but we declined. Instead, I gave MJ about 45 cc of Pepsi (FYI; Pepsi is chemically similar to Theophylline). It sent MJ’s heart rate through the ceiling, but opened up her lungs!! LOL! Mueller thought that was good that Pepsi helped a lot but suggested we don’t try it all the time. So anyway, onto today!
We left the apartment at 8am for an 8:30 x-ray. Of course, they couldn’t find the paper work on the computer – was floating around somewhere in the web I guess, so if anyone sees it, send it back here, please!! We didn’t get done in X-ray until 9:30 (even though we had an appointment for 9am) and into see Mueller at 10am. We talked for awhile about the X-rays and the “not breathing” episodes. Basically, MJ’s lungs are locked in; her ribs appear to have no expansion capacity left, so as Mueller said, she has teeny tiny lungs! Because of this, MJ walks a tightrope…her lungs have no capacity for an error so any infection just sends her over the edge. She also has a floppy airway that during certain movements, her airway could collapse and at random times. We just have to be aware and know what to do. We talked more about meds and what else we could do at this point. We asked about Prednisone (steroid) to which he was going to suggest too. We are also doubling MJ’s Biaxin (antibiotic) dose and continue it for 2 months. (Basically, MJ has been on antibiotics since September and will be for at least 2 more months.) We are also doing hypertonic saline neb treatments twice a day for the next month. Normal saline is 0.9 aline and MJ will be doing 5 which is the percentage of salt in the North Atlantic Ocean in case you wanted to know). The hypertonic saline treatments are used for kids with CF and help to keep the lungs moist and prevent them from drying out too much. It also helps bring mucus up. MJ also had a blood test to check the venous CO2 supply in her blood – it was normal and he suggested we test for RSV and Influenza A and B, and do a sputum sample. We had to trial the saline treatment at the office to make sure no reaction occurred – which it didn’t. MJ also has to use her nasal mask for awhile to help keep her lungs open. We left with prescriptions in hand around noon-ish. We headed to Wal-Mart to get the prescriptions filled. They had the prednisone, which we got, won’t have Biaxin in, until Monday (luckily we have extra from this month), and they had no idea what Hypertonic Saline was. Called Mueller back to discover that it can only be made at a few places (the hospital being one of them). But by the time we left, it was time for class – Biology Lab. Lab was good, easy quiz and easy lab. After lab, we headed back to the hospital for the saline – took them about 15 minutes. So, we got home at 5pm. It was a long, long day. Tomorrow, MJ is going to class tomorrow and see what happens. She does feel a tad better (since the Pepsi last night) but is still tired. Of course, now, her nose won’t stop running and is needing suctioned every 5 to 10 minutes. (we are supposed to cut in half her dose of Robinul, but I don’t see that happening if we want to sleep tonight) She has a biology test tomorrow (where the answer to number 1 is D – in case you wanted to know). She also has computer class before the test and psychology after the test, where they are reviewing for their test on Monday. Hopefully, we will get the results back on the RSV and Influenza tests tomorrow and the sputum on Monday. Other than that, it has been a stressful week with me getting more gray hairs. We are hanging in there, I’m feeling better (but if you ask MJ, I sound like a frog). We will update if we hear anything but we are turning off the phones until 1pm and sleeping in again! Thanks for all the prayers for me and for all my friends. It is a bad year. Love and blanket hugs to all!!!
MJ and Brenda
Quotes of the week:
~“The only way to keep your health is to eat what you don't want, drink what you don't like, and do what you'd rather not.” ~ - Mark Twain
~ “He who has health, has hope. And he who has hope, has everything.”~ - Proverbs
Saturday, January 19, 2008 4:38 PM CST
Hi everyone:
Another week has passed and I have survived, barely, but I did. Classes were long but I am done with 2 weeks now.
Last weekend was a bad weekend, I was having a reaction to adding extra amino acids into my formula. My sats were dropping last Saturday night into the 60’s and my heart rate kept going higher. We figured it was the aminos so Brenda dumped my food and gave me tons of water to flush it through. By evening I was much better. I have also noticed many other things since then. I have quit eating meat since the beginning of the year and I do sweat less than I used to plus my desatting at night has been minimal. I have always tolerated meat, but it seems as I don’t tolerate it any longer. I am working on it but it will be a long process.
Anyway, I am done with Excel in my computer class and really learned a lot so far. Next week we start on Word. Biology is great! I love the teacher and love the lab. Last week in lab we got to test foods and I tested my Tolerex mixture. We could test for starch, sugar, fats, or protein. I tested for starch and protein. Of course there was no protein but the starch was interesting. If you add iodine to a starchy substance, it will turn it a purplish black color. So, I added Iodine and it turned blackish-purple only on the top. It was weird, it sort of resembled a lava lamp. You could shake it and it would drop to the bottom of the tube and then come back up sluggishly (just like a lava lamp). Then after about 15 minutes, it disappeared completely and was swallowed up by the Tolerex. My teacher had never seen that before. Rehab class just sucks. All of the extra work we have to do for the class plus going to a meeting next Monday evening. I start volunteering Wednesday for 5 weeks. I will volunteer 6 hours a week for 5 weeks on Monday, Wednesday, and Friday from 3:30 till 5:30. It will be horribly long days as I will be in class from 9:30am until 2:30pm along with volunteering from 3:30 till 5:30pm. My abnormal psychology class is boring. It is good material but the class is just boring as she lectures and doesn’t really give us an opportunity to ask many questions. So you just sit and wait. One of my classes is all done. I had SimSoc today. We played a simulated society today. We were rioted against and my group got power hungry…too much male testosterone in our group. We had to write small mini papers during class after each session and a 4 page paper due the beginning of March. I’m just glad it is done!
Let’s see, what else has happened. I got my new footplate that broke on New Year’s Eve. It is great to have both footplates working. I am so thankful that I will now have a three day weekend. I just got out of class today (yes, on a Saturday) but Monday is a holiday and Tuesday my class was cancelled. We are planning on sleeping in tomorrow and turning off the phones! We will NOT be woken up. Please wait until after 1pm to call!! LOL!
Please say prayers for all of my friends. My prayer list is at my website: http://www.our-sma-angels.com/b4sma/prayers.htm . Also please say prayers for the Eden’s family. Eden had been hospitalized since the beginning of January and passed away yesterday afternoon. I am really hating SMA right now. To view the tribute I made for Eden and family, please visit: http://tinyurl.com/ytlbz3 . Thanks so much for all your prayers and thoughts.
MJ
Thought for the week:
A flower's appeal is in its contradictions -- so delicate in form yet strong in fragrance, so small in size yet big in beauty, so short in life yet long on effect. --Adabella Radici
Saturday, January 12, 2008 12:23 AM CST
Hi everyone:
I survived the first week, barely, but I did survive. This week was hard on me physically, but I am okay. I know it does not have anything to do with what I am taking, but just getting back into the swing of things after six weeks off of school and the length of my days. Plus, my first day was stressful, to say the least, and I have had a constant sinus drip all week. The weather has not helped at all. Monday started off with a high of 65 degrees and today, it is only 34. What a difference.
Anyway, Monday just sucked. I have three classes on Monday, Wednesday, and Fridays. I start at 9:40am and get done at 2:35pm. That is the longest I have had to go straight through and it is rough on me physically. My first class is a Computer Science class: Intro to Office 2007. On Monday, the classroom was around 85 degrees. I am actually learning a lot in class since I had to go out and buy Office 2007 and install it on my computer. After class, I went to get my books and went to pay for them only to find out that NY state hadn’t sent the money yet. It sucked to have to pay $466 out of pocket. Thank goodness I had just gotten my book scholarship money so I used that. After feeling broke, I went and tried to get my books on CD to discover only one was done. UGH! I then went to my second class, Biology of Food. It is a smaller lecture hall that has wheelchair seating for three people and there are six of us in chairs. We have all become very close, LOL! My teacher is hysterically funny and makes the time fly by. His first job was a hair stylist, who owned many hair salons. He then went on to school to become a biologist and taught at a nearby college before coming to WSU. He says when he grows up he wants to be a truck driver. He has great stories and is just too funny. After biology I had abnormal psychology. The teacher tries to be funny, but isn’t. The classroom was just too warm, only about 80 on Monday and the room is a tad cramped, but it will be a long class since she just talks and talks. So anyway, Monday, as Brenda and I were walking back from getting my books, we kept seeing campus cops driving around the tunnels (they all got Segway cop cars?) and we really had no clue why, and just kept seeing them. Of course, the wireless computer network went down during my psychology class so I couldn’t find out why until later, but I had to go buy my Office 2007 program only to discover that my university ID was not working, since it was getting worn out from its frequent use. After paying for it I had to go back and get a new ID card . I then headed home to crash physically. I still couldn’t get online using wireless or through the network, to call and get yelled at for not checking out the website to find out that the whole system crashed. Gee, why did I not think of signing online to discover that the system was down. I did what anyone would do and took a nap. The reason for all the cops, was that two guys were seen in the morning in one of the buildings wearing black trench coats with a gun. Students were not notified until 11am of this even though the guys were seen at 6:30am. Sigh!!
Tuesday went okay as I slept in since I do not have my Rehabilitation Resources class until 4pm. Class was okay, it will not be my favorite, but it will be long. We meet from 4pm until 7pm only about 5 of the weeks out of ten, but have to do a lot of other stuff besides class. In a group, we have to write a grant, have to volunteer 5 hours a week at a facility, write a paper after each time we volunteer, create a resource book for a community, plus a few other things. Tuesday was my birthday, so I am officially twenty years old. During class, my friend Sara invited me to come to Olive Garden to celebrate with her (it is her birthday too). It took a lot of convincing to get me to go, because they weren’t meeting until 8pm. I did go and have a good time. I did not eat anything since it was too late for me to eat, so I sat and drank some lemonade. We got home at 10pm.
Wednesday and Friday were pretty much the same thing, my computer classroom was too warm and biology class was too much fun, but it is going to be hard on me. I did find a place to volunteer (waiting for the teacher to answer my email to get approval – she claimed to answer back in 24 to 36 hrs but still have not heard back since Wednesday morning). If it goes okay, I will volunteer 90 min on Monday, Wednesday and Fridays after class. I will be exhausted this quarter, so if you do not hear back from me, be patient as I am sleeping!!
Thursday, I had biology lab and was delighted to discover that my lab instructor is once again Annie from last quarter. I was relieved to find out that I didn’t have to teach a new teacher about me. That helped. We meet once a week and only for 9 weeks.
My favorite class by far is biology of food. Class will help a lot since I am restructuring my diet again and learning about why I am is going to be a big help. I also like Computer class since I have the new program and am learning first hand how to use Office 2007 and all the cool stuff you can do. I have never had a computer class and had just taught myself so I have already learned a lot about Excel so far. We are learning how to make a mean looking spread sheet! I am not enjoying my Rehab class on Tuesdays or abnormal psychology (but that might be due to the fact that it is my last class of the day and I am tired by then) but I will get through it.
Prayers please for all of my friends who are under the weather. Big prayers also for my friend Dahrian and his family. Dahrian passed away this week and will be greatly missed by everyone. I made a slideshow about him from when I met him, if you would like to see it, please go to: http://tinyurl.com/3y4nu6
Thanks again to everyone for my birthday wishes and beautiful thoughts. It made my day to read the emails, cards and posts about my day. Thanks again for thinking of me and cheering me up during my hard first week. This weekend, I am not doing much except sleeping, sleeping and more sleeping. I have one assignment to work on and read a lot for my classes, but not too bad for the first week. I have a feeling that I will need lots of sleep during my weekends and will not be doing much all quarter except homework and sleeping.
MJ
Quote of the week: Don't underestimate the value of Doing Nothing, of just going along, listening to all the things you can't hear, and not bothering. ~Pooh's Little Instruction Book, inspired by A.A. Milne
Saturday, January 5, 2008 11:55 AM CST
Hello Everyone:
I’m back! Bet most of you thought I’d disappeared from the face of the earth. Nope, I’ve just been away from the internet. Hope you all had a very Merry Christmas and Happy New Year. I certainly did!
I’ve been staying at GJ’s since the 19th and having a great time with her and the rest of my family. I did scare Brenda on the 23rd of December. I had extra congestion in the morning but she wasn’t too concerned. She went out to the kitchen, just down the hall, to grab my Pulmozyme nebulizer treatment. She heard my pulse ox beeping, she came running back and found me bluish and silently crying. My pulse ox was reading 53 it should not go below 94 !! She used my cough machine several times to get me back up. It was really scary for both of us. I spent the rest of the day in bed watching movies on my laptop and doing breathing treatments every 2 hours.
Christmas Eve we had our usual family gathering and we opened presents. I didn’t get up in my chair until 5pm and was able to enjoy the festivities. I was feeling much better so we did nebs every 4 hours. It went away just as fast as it came so we are not entirely sure what caused it. By Christmas day I felt all better! It was just Brenda, GJ, & I opening gifts on Christmas. I got lots of great presents ranging from a beautiful little music box to flannel pants to an MP3 player to movies. After opening presents we had cinnamon rolls and GJ took a rest while I watched Shrek The 3rd and Brenda made a blanket or two, of course.
December 27th, Brenda and I headed for the apartment for a bit to drop off Christmas gifts. I checked e-mail but I didn’t write much. We headed to the hospital for blood work for Dr. Carvalho’s nutritionist to look over. Boy was that NOT fun!!!! It took them 4 sticks to get all they needed; stupid Zinc test takes a lot of blood. Poor LaBonnie, my lab tech, felt horribly that she had to stick me 3 times and had to call in Kelly to help. They ended up having to stick me in the foot. It really hurt and I’m still bruised from it.
Over break I’ve been able to read two books…well actually Brenda read them to me. I read Stuck in Neutral, which I highly recommend if you’re not easily offended. It was a quick read and very good. I also read Fish! which is my “textbook” for my rehabilitation resources class. I’ll admit I was reluctant to believe it could possibly be a good book. I mean what does the Pike Place Fish Market have to do with motivation??? It was an awesome book! I really enjoyed it and learned a lot from the story. It was also a quick read and great for anyone who needs a little motivation.
New Year’s Eve party was fun. It was mostly just family, but we had a great time. We had tons of food that I shouldn’t have eaten, but it was a holiday. We watched movies and sat around laughing so what could be worse. I didn’t get out of my chair until 1am and asleep until 2am. I was glad that I could sleep in on New Year’s day and didn’t wake up until 11am. It snowed all day, so Grandma, Brenda, and I stayed in all day, in front of the fireplace. Brenda made more blankets, I worked on the computer, and GJ read a book.
Wednesday, January 2nd, I went back to the apartment, with more stuff and checked email. The roads were not the best, but Brenda did just fine. It snowed all day again. I had my doctor appointment with Dr. Carvalho and the nutritionist. My bloodwork was “normal” and everything looked fine. Dr. C gave me a supplement, Beneprotein, to try to increase my protein intake. After talking to Jeanna and Mary, I have decided to avoid it and try to increase my protein level by supplementing my diet with amino acids. Much safer alternative, if you ask me.
On Thursday, it was my sister, Emma’s birthday. She would have been 19, hard to believe. We celebrated my birthday with GJ and my aunt Jill, uncle Mitch, Zach, and Pete. We had a great time. I had fun with the boys and enjoyed all my birthday gifts. We had a great time, looking at my new calendars!
Yesterday I arrived home and started to catch up with my hundreds of emails and website work to do. I am going to relax all weekend and just lay low. Monday morning, I finally start back to school. It will be a shock after having six weeks off. I am taking 5 classes but one class only meets once, so really just have four. I will email next week to let you know what I think. Tuesday is my actual birthday and I will be 20. Only one more year until I am legal to drink, but I doubt I will!
To see a 30 minute montage visit http://www.onetruemedia.com/shared?p=4aa3e47a07e1d5ec24f822&skin_id=0&pid=624&utm_source=otm&utm_medium=text_url
Or just pictures can be viewed at http://www1.snapfish.com/share/p=47851199553515777/l=343052605/g=5758299/cobrandOid=1000131/otsc=SYE/otsi=SALB
Please continue to pray for all my buddies who are under the weather. There are too many that are sick and in the hospital.
http://www.our-sma-angels.com/b4sma/prayers.htm
Congratulations to Angel Phoenix’s family on the birth of Maverick on the 27th. Maverick is adorable! Also, congratulations to the Sykora family on the birth of Emma on January 3rd. Emma is beautiful and we want more pictures!
MJ
Quote:
“There are no wrong choices; there are only different choices.” ~ Susan Jeffers
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