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Charlene's Journey

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Janet Mitchell

Hi everyone!unnamed.thumb.jpg.82ac2393660102e402491d

Long time between updates, I realize! Sorry about that! Charlene, who was diagnosed when she was 11 with Crohn's disease, in 2008, is a sophomore nursing student at the University of Vermont now! Her background: She had a temporary ileostomy fashioned on 9/11/09 and then a complete colectomy and permanent stoma made on 6/1/2010. She is feeling extremely well since her surgery in Nov. 2014, during which she had a small amount of small intestine removed and her stoma refashioned and moved to the other side of her stomach. She has had regular Remicade infusions every 8 weeks since then and these have kept her disease and symptoms under control. Her blood tests show no signs of inflammation, which is great news for her and for us.

So, she's on her way to helping people just like herself! She's happy, healthy, and active!!

Janet

Janet Mitchell
blog-0158931001438882688.jpgIt's hard to believe, but in three weeks, Charlene is leaving for college. She's feeling very well. She has Remicade treatments once every eight weeks, which, fingers crossed, seems to be keeping her Crohn's disease at bay. She's going to study nursing and she'll have the time of her life at the University of Vermont, in Burlington, VT. I'll miss her terribly but what a long, long way she has come since her initial diagnosis in 2008, when she was just 11 years old and almost finished with 5th grade.

Charlene has achieved more than most kids her age, despite having an ostomy, and active/aggressive Crohn's disease. She just graduated from Kingston High School, in Kingston, NY, 15th in her class of 420 kids! She has played the trumpet for 10 years and this year was selected to perform in the NYSSMA band in Rochester in December. She had a perfect score on her All-state level solo in the spring last year! She was a drum major in the marching band for two years...which was both physically demanding and required leadership skills which she developed along the way. To say that I'm proud of her would be an understatement. I'm THRILLED for her. Despite everything...despite her three surgeries, and endless numbers of days in the hospital, and visitng doctors and wound care nurses, etc. she has absolutely risen above it all.

So off she goes! Thank you for all of your support, everyone!
Janet Mitchell

Hi Everyone!

Hey, I just got a Happy Birthday message from Ostomyland! I thought you guys had closed your doors!

Charlene is doing really well. She had surgery on November 4th and they removed about 5 inches of small instestine and moved her stoma to the other side of her body, from right to left.

So, she has a brand new stoma, and an incision (where they moved the stoma from). They are both healing fairly well, but I'm disappointed by the incision where her stoma used to be. It looks like the scar will not be narrow and closed nicely. That kills me. Also, when they fashioned her new stoma the incision was too wide, so they took a stich next to it, which dissolved way too early and so that whole thing popped apart. Of course they don't repair these things, they just "let them heal." Very frustrating, really.

Charlene is such a trooper, though. No complaining at all, already back to school!

Tomorrow she starts Remicade.

I'm at work, so I have to run, but hello to everyone out there in Ostomyland and thank you for the birthday wishes!!

Janet

Janet Mitchell
blog-0259903001403818375.jpgI officially hate Crohn's disease. Charlene has developed a fibrotic stricture about 2 cm in from her stoma that needs to be treated, perhaps surgically. Tests and bowel rest have allowed her enough comfort to be home for now until treatment is determined. More details to follow. I'm not amused, but I am exhausted. Sleeping on vinyl recliners will do that to a mom.
Janet Mitchell

Hello Everyone!!

I am so sorry to have neglected my blog. It has been a CRAZY year, and hopefully I'll have time now to regularly update you as to Charlene's status.

For now though I have a quick question: Does anyone have any experience with a persistent rash under your flange? I have to admit that I have prided myself on how well I have been able to keep Charlene's skin under her flange looking. I've used a combination of things to quickly put to rest any rashes that have popped up. I always assumed the rashes were yeast infections and have treated them as such. This doesn't respond to anything (plus extraordinary measures - like taking a diflucan tablet once a day for a month, or using lotrimin powder under the flange consistently). I'm starting to wonder if she's become allergic to the adhesive (and we already use the Hollister flanges with the non-allergenic adhesive because she WAS allergic to the band-aid-like adhesive). Any advice would be appreciated. She has an appointment in two weeks with the wound care nurse, but I'm hoping someone here will have some advice for us.

Other than the rash under her flange, Charlene is in fairly good health, and takes a maintenance drug called Budesonide, which is a steroid that treats the inside of her intestine (the parts she has left!). She still suffers occasional symptoms like stomach aches, back aches and nausea but they are few and far between for the most part.

Thank you!

Janet

Janet Mitchell

blog-0142951001349757964.jpgHi Everyone!!

Oh my gosh...I cannot believe I haven't posted since APRIL! Please forgive me. To say that we've been busy is SUCH an understatement. And we still are!! In May I was called back to work and From June 1st until Aug 18th I worked every day creating technical documents for a company that I used to work for with my husband...and the documents were due six months BEFORE they even asked me to write them!! Things quieted down until just this week, so I can't even promise that I'll write more often!!

Anyway, enough about me and my excuses. I took Charlene to a pediatric gastroenterologist in CT who had treated her with Tysabri two years ago. It was our last great hope before they removed her colon. Anyway, this doc put her on Entocort for the summer, and we see him in 10 days to re-assess the situation. Entocort is basically a steroid for the intestines. No side effects like puffy face, or anything. It's a mild drug and I'm not sure it has done the trick. But it got her through the summer during which she was able to swim in a summer league on a team that she's been on since she was five. This was her 10th season! This fall she dove for the varsity team at the high school because she really wasn't well enough to swim competitively. She was getting dizzy and out of breath during practice during the summer, and those practices are nothing compared to varsity practices.

Anyway, an Ostomyland member wrote to ask me about swimming today and it reminded me to update this blog. I will do so again when I have more time and more to tell, but hello to everyone out there in Ostomyland!! And to Laurence who originally suggested Active Lifestyle Products seal rings for over the flange during swimming: you were our real lifesaver when it came to swimming! When we went to the wound care nurse the other day at the hospital she said that they recommend Active Lifestyle Products seals to all of their patients. Charlene wears one every day, swimming or not. The nurse said so many of their patients do as well. It gives them that much more confidence that the flange will stay put.

So, for those of you looking for a little more protection and seal, try them. They come in two sizes and they are just the greatest thing ever invented (nobody even pays me to say that!!) Our insurance covers them without question. http://alpglobal.com...l-TM-Rings.html

That's all I have for now...stay in touch everyone! Oh, the picture of Charlene is of her and her BOYFRIEND (he's so sweet) and they are both section leaders in the marching band at the high school. (She plays the trumpet.) This is a picture of them together on the bus on the way to a competition. He takes care of her just like I wish I could when I'm not with her...

Janet Mitchell

blog-0693503001334303981.jpgHi Everyone,

Charlene had some tests over the last two weeks and they showed more disease, this time in her small intestine (she got to swallow a capsule with a camera in it so they could see what was going on). So, it looks like she'll be trying a biologic of some sort again. This is fairly depressing news since the biologics we tried never really did help her before. The disease they see this time around looks mild. I'll post another entry when we know more.

Please keep us in your prayers,

Janet

Janet Mitchell

The other day I realized it's been almost four years since Charlene was diagnosed with Crohn's disease. I couldn't believe it. On the one hand it seems like it was just yesterday, and on the other it seems like it was a lifetime ago...and even more amazing is that she will be 15 in two days!!

We have had amazing insurance problems for a little over a year. Charlie changed jobs in January though, and now we have excellent health insurance once again. For the year or so that Charlene was unable to visit her gastroenterologist in person, she has been well cared for by our family doctor, and we contact her gastro by email. He calls in a prescription if she needs something. Nothing takes the place of being seen in person, though, and she has an appointment with him in May.

Since Charlene had her colon removed on 6/1/2010 she has hardly been symptom-free. She used Canassa suppositories to calm her rectum. She still feels pressure there from time to time. She has stomach pain, back pain, joint pain, headaches...I'm sure we'll be going in for tests after we see her gastro in May. On the other hand, she is excelling in school, quit swimming year-round to concentrate on her music aaaaaannd...drumroll please.....she has a BOYFRIEND. Now I'm the mother of four daughters (and one son) and this is all unchartered territory for us! Heck, our other girls didn't even go to the prom with dates! I was thrilled for her though, since I'm sure she had her doubts about boys liking her.

ANYWAY. That's Charlene for now...just growing up and enjoying life, and working around her Crohn's symptoms when she has to. Recently her high school marching band traveled to Disney in Florida and marched down Main Street. We went along, got a room near her group's room, and she popped over from time to time to use one of our bathrooms, and change her flange/pouch, etc. It worked out just fine all around.

I'll keep you updated after we see the doc in May. Take care everyone!!

Love,

Janet and Charlene and family

Janet Mitchell

These past two weeks have been a little harrowing, with Charlene complaining of rectal pressure. After she had her colon removed on June 1st 2010 the doctor asked her if she had any discharge, or pain, in her rectum. She never has. He thought that was amazing since for a lot of people that becomes the most serious problem after surgery. SO. Here we are, 15 months later and she's experiencing pressure in her rectum. The doctor says she probably has active inflammation, which of course disappoints me, since that means her Crohn's disease is alive and well. He prescribed Canassa suppositories, and we're waiting to see if they help. She has had a minimal amount of bleeding as well, but any bleeding is too much, as far as I'm concerned. Meanwhile, this has all hardly slowed her down. It paralyzes me at times, but she carries on as usual!!

Janet Mitchell

Just a quick "brag" about Charlene. Sorry! She is just starting ninth grade and went out for varsity swimming and she made it!! It's exciting, it's affirming and she's so proud. At the end of seventh grade she went out for lacrosse and didn't make it, so a bad memory has been replaced with a good memory! We're so pleased for her.

**I forgot to mention that Charlene made varsity without her coach knowing about her Crohn's disease and ostomy (I think). She of course had the requisite Dr's physical, and we noted her condition on the interval form allowing for updates, etc., since the physical. But, I'm not sure the coach reviews those. When she arrived at tryouts, her main concern was her ankle, which she had badly sprained at Camp Oasis the week before. Anyway, we think she was accepted onto the team without prejudice, is what I'm saying!! The day I DID send in a note explaining her situation (which sometimes causes her to have to rest when others don't have to) she swam every lap in practice. Clearly she is not disabled by her disease much any longer. That's makes a mom like me very happy!!

Janet Mitchell

Today is opening day of Camp Oasis here in New York! Charlene is so excited to go...she's been packed and ready for three days. Camp Oasis is run by the Crohn's Colitis Foundation of America (CCFA) and luckily for us, takes place at Camp Scatico in Elizaville, NY, about 45 minutes from our house! Kids with Crohn's disease or colitis from all over the northeast U.S. are invited and they attend for free, at the expense of the CCFA. It's amazing.

Charlene was first diagnosed when she was 11 years old, in May of 2008. When we got out of the hospital after her initial stay, we found the CCFA website and references to Camp Oasis for kids with either Crohn's or Colitis. We missed the sign-up time (by far) and so it wasn't until 2009 that Charlene first attended camp. She loved it!

She loved it and had a great time despite the fact that she was so sick while she was there that she almost had to leave after the first night! She was sick but soldiered on and stayed for the entire five nights. Having Crohn's disease was tough but what changed everything for Charlene was meeting other kids who knew exactly how she felt. She also met a little girl that week that had an ostomy, but wore her bikini anyway! (I'm so happy to say that Charlene has her bikini all packed for camp this year!)

So, when Charlene was facing her temporary ileostomy within the next month, she wasn't as afraid as if she had never met the kids at camp, or seen the girl with the pouch wearing a bikini and being so comfortable with herself. In between Charlene's first and second time at camp she had two surgeries...she had her colectomy a month and half before camp last summer. At camp she had two girlfriends (one of bikini fame) that had pouches, and they went to the nurses office together to change their flanges/pouches during camp! They even signed each other's pouches before their last change at the end of camp!! It still brings tears to my eyes. So, today she is packed and ready for her third Camp Oasis!! It has made all the difference in her life. She and her friends keep in touch all year long on Facebook and have planned a birthday party for one of their friends while they'll be at camp.

This summer Charlene was awarded the "Superstar" award from her summer swim team! And she was feeling strong enough to compete in the 50 yard Fly this summer, too. It has always been her favorite stroke. Charlene is going full steam ahead this year. She starts high school in September. She'll be on the varsity swim team in addition to her year-round swim team and she'll be in the marching band. Huge commitments. The day after camp ends Charlene has swim try-outs from 8:30 am til 11:30 am and then marching band from 1 to 8 pm (for two weeks!). It's gonna be crazy for those first two weeks before school actually starts!!

So, here's to living a full life after ostomy surgery!! Charlene does it VERY well.

Janet Mitchell

Happy Anniversary to Charlene --

It was a year ago today that Charlene went into the hospital to have her colon removed (and it's been three years since she was diagnosed with Crohn's disease). It seems like yesterday, and it seems like a hundred years ago, all at once. Since her surgery last June 1st, Charlene has really had very few setbacks. Just once in July right after surgery she ended up dehydrated and back in the hospital for a couple of days. That was like a vacation compared to what she was used to...she even got to eat while she was there!

Charlene is thriving...she's graduating from 8th grade in a few weeks, she swam on a year-round competitive swim team all year, she's on the highest honor roll, and she plays the trumpet in three different bands. She's looking forward to high school, being in the marching band, being on the varsity swim team, and she's really excited about going to summer camp with the Crohn's Colitis Foundation of America again this summer (her third time). This summer will be her tenth summer swimming for the Rosendale Rapids here in town. We're so proud of you, Charlene!!

Thanks to everyone at Ostomyland. I found you online during the long nights I spent at the hospital with Charlene in 2009 when they first started talking "diverting ileostomy." I couldn't have done it without your support! I found Ostomy Secrets online during that same week, and Charlene has used their products from the beginning. They have made all the difference. So many people have helped us along the way. I'll be forever grateful.

Hope everyone is well...

Love,

Janet (and family!)

Janet Mitchell

Hi Everyone out there in Ostomyland!!

I've been away for a long time it seems, which is probably good news. Charlene has felt better in the last 2 months than ever since her diagnosis in May of 2008. Wow, it seems like that was yesterday and so long ago all at once. Anyway, it turns out Charlene had been taking twice the dose of Omeprazole than prescribed, and we think that was staving off nausea very well for her, so she continues to take it. Swim season is almost over, as far as competitions are concerned. Two more I think. I just want to say that Charlene is truly an amazing kid...probably in the last month we've had the two worst blow-outs of our career with her ostomy, and honestly, she never flinches...she never whines, she never complains...it's kind of crazy. I appreciate her even-keeled personality SO MUCH. No self-pity, no questions...she just gets on with it.

So, that's us. Hope all is well for everyone...

Lots of love to everybody,

Janet

Janet Mitchell

Happy New Year everyone at Ostomyland!!

Just a quick update on Charlene....she seems to be feeling really well and she continues to swim regularly, and even went downhill skiing for the first time over Christmas break. I ended up rushing up to the ski hill to change her flange, but hey, whaddayagonnado? We are still learning about supplies, and how many to have on hand depending on the event. She went to a birthday party, slept over and then got up the next day to go skiing with everyone. Unbeknownst to me, she had used her one set of supplies early in that morning before leaving to go skiing (like 5:30a.m. early!). So off she went to the ski hill without supplies. The different foods from the party (pizza and cake I imagine) must have made her output more liquidy than usual (she had immodium with her, but of course left it at her friend's house)...and eight hours later she was leaking. So, I get the following text from her at about 2 in the afternoon: "Come now and bring supplies." She told me later that as she was coming down the hill she could feel a cool breeze because of the liquid leaking, and thought, uh oh. Anyway, to make a long story longer, I quickly drove up (45 min), changed her flange in the medical office where she was waiting for me, and left her to get back to more skiing. She was having the BEST time! The kids she was with never even knew I'd come there. Of course when she got back to the lodge her poles had been stolen. Poor kid! She seriously just rolls with the punches though. One of the older kids with her let her borrow his poles and off she went. I think she was more upset when someone stepped on her new Uggs on the bus on the way home. What a day she had! And yet she came home so happy and kept saying, "C'mon, let's go skiing right now!" So, live and learn. Overnights plus skiing requires more than one set of supplies. Clearly.

I'm applying for a continuation of coverage with our health insurance company. I'm hopeful that everything will work out just fine in that regard. It's hard to believe that this May will be the third anniversary of her diagnosis. It's been a long and grueling journey at times, but lately I've begun to feel more like myself again. A parent's guilt and worry are never ending it seems.

So Happy New Year to everyone at Ostomyland...I couldn't have made it without you!!

God bless,

Janet

Janet Mitchell

Hi Everyone,

Hope you're all having an amazing holiday season.

Sorry it's been so long since I've posted! The ups and downs of the past month have been a little crazy. After Charlene's blood work came back with no irregularities, we ended up going in on November 16th for an endoscopy, flex sig and an ileoscopy. And the results were very good. And while that seems like good news, and it was, we are still sort of up in the air as to what is causing Charlene so many symptoms. We went back for a quick visit to the Dr. on Dec. 9th and I asked him to bring up the pictures from the tests, and also the pathology report. He read through them and said, "It looks like you might have a teeny bit of Crohn's in your upper GI tract, Charlene." I was stunned, and sad, and since then I've been quite troubled.

In the meantime we got three letters from our hospital saying that they, the gastro and the surgeon would no longer take our insurance as of the end of the year. There is a 90 day transition period and you can petition for continued service based on whether or not there is an ongoing treatment plan in the works. At first I was just sort of stunned, and then I got over it. We'll just work with it for this year and next year opt into a different plan which does include our hospital and doctors. It's a more expensive plan, but at least we have a way to continue our care with them. ARGH. Still very frustrating and discouraging.

Meanwhile Charlene still experiences fatigue, nausea at night, some dizziness at times, etc. We'll have to continue to pursue the source of these very Crohn's-like symptoms. Meanwhile I might take her to the doctor in Connecticut who administered the Tysabri to her last winter for a second opinion. On a happier note, Charlene continues to thrive despite her symptoms. She swims four or five nights a week, has a full social life, is an excellent student, and her stoma care seems to be routine and easy, with her flange staying put at for at least two days every time, and usually more.

All of our daughters will be here for the Christmas break as of tomorrow afternoon...Charlene is the youngest of five (our son is married and lives about an hour and half from here. He and his wife will be down Christmas night.) and the girls have SUCH a great time together during the holidays. It makes the house busy, noisy and so much fun. I hate it that kids grow up and move out...I hate it every time one of them leaves for college.

Anyway, I'm very excited about Christmas as we have tons of surprises in the works for the kids (and my shopping is done!). Hope you're all enjoying the season!

Merry Christmas and Happy New Year, everyone!

Janet

Janet Mitchell

Nine vials of blood! That's how much blood the lab drew from Charlene yesterday. After continuing to feel yucky, Charlene and I trekked up to Albany (about an hour and fifteen minutes from here) to see her gastroenterologist. He's concerned. She shouldn't be feeling like she feels, really. The more we told him, the more concerned he became. He would like to do an endoscopy first thing next week (I'd rather wait another week, which he said is fine also). We also might do a capsule study (where Charlene would swallow a capsule with a tiny camera in it and it takes pictures all the way through). Anyway, I asked the doctor if he thought that leaving in her diseased rectum might have been a mistake...in other words, could that much disease be causing all of this misery? And he said it's possible. So, maybe we're looking at more surgery. I don't know. Rats.

Janet Mitchell

Hi everyone -

I haven't blogged in a long time because things with Charlene are pretty stable! I am thankful for that, believe me. She does still have some symptoms of Crohn's that we deal with, but overall, since she had her colon removed in June her health has been much improved. We're not getting a lot of wear time out of her flanges (24 to 48 hours generally) because she does swim almost every night of the week. However, we've had a flange last for 5 days once, swimming and all. Charlene's skin looks great. I recently gave her a Diflucan pill to clear up what looked like a yeast infection around her stoma and her skin has never looked better. She seems to have regular nausea, some back pain, some joint pain, some fatigue...I'll admit that I'm worried she has disease in her small intestine. We go to the doctor in December...and I'm in touch with him via email. He knows I'm concerned. Anyway, I'm up late tonight and am just worried. I know that doesn't help, but it doesn't help me sleep either. I worry about supplies and health insurance, too and Charlene's future in general. This stuff just really gets to me sometimes.:mozilla_tongueout:

I hope everyone out there is doing well. I don't know how I would have gotten to where we are now without this community of ostomates and caregivers...especially our illustrious webmaster, Jason. It's great to know that I have a place to go with my worries, and know you understand.

Take care everyone!

Janet

Janet Mitchell

School

Hi Everyone -

School started last week, and things seem to be in full swing. Charlene joined a year round competitive swim team, so on top of school we have swim team every night. I'm so impressed with Charlene's physical capabilities, although she hasn't yet gone to the "dryland" part of practice, since she's afraid she'll be too tired to make it through the swimming afterwards...but her goal is to eventually go to that as well. As far as stoma care goes, Charlene is just carrying extra supplies with her and so far hasn't needed to change her flange while in school. We seem to almost be in a routine, and change it once every other day. I consider that pretty good since she's swimming every day, and showering.

That's all the news here...I'm thrilled that we're past the worst and that Charlene is relatively symptom free, and healthy enough to go to school every day AND do swimming...kind of remarkable!

Have a great day!

Janet

Janet Mitchell

Camp Oasis this year, for Charlene, was amazing. She literally said she loved every minute of it.

One story I wanted to relate to you great ostomates out there: Charlene met two girls her age, Meagan and Morgan, while at camp. She knew Morgan from last year and Meagan was knew. They are both Charlene's age and going into eighth grade just like her. After Charlene got home I finally got around to asking her how many times she had changed her flange while she was gone. Twice, she said. I said, Did you go to the nurses office to do it? Yeah, she said, me and Morgan went together. Oh, I said, does Morgan have a stoma. Yeah, she said. I thought that was SO COOL!!! Then I asked her more details and she said the second time that she changed her flange, she went with Morgan and Meagan. Turns out Meagan has a stoma too! The three of them went to a room in the nurses office that had three beds in it, and they all changed their flanges at once. Turns out Meagan had her surgery on the same day Charlene did this year! They had so much in common and I know it was a very cool thing for them to all know each other and go to the nurses office together! Later on when Charlene was getting dressed I walked by her room and noticed writing on her bag...she and the other girls signed each others pouches before they finished changing their flanges on Saturday! TOO CUTE.

Janet Mitchell

I don't know how many of you have children with Crohn's or Colitis, but here in the States there is a great summer camp for kids with either disease, and it's free - sponsored by the Crohn's Colitis Foundation of America. It's a five night sleep away camp. There are several throughout the United States, and luckily the one for the Northeast is practically in our backyard - just a half hour away. Last year when Charlene went she was SO sick and almost couldn't stay for the full five days. But, she managed and made some great friends while she was there. I highly recommend the camp. It made a huge difference for Charlene. She loves knowing kids that know what she's going through....I remember when she got home from the hospital in September after her ileostomy she emailed a little girl from camp whom she had just met who had a bag and said, "I got a bag, too!" Priceless.

Charlene's health is fairly steady since she was in the hospital for dehydration a few weeks ago. Very few complaints of nausea, very few complaints of being tired. This weekend are the championships for the swimming league we belong to and she's planning on going. She swam last year in them as well, but I remember she was feeling so lousy that we went late, and left early. She swam, but it wasn't a great experience. This year she's raring to go.

As far as ostomy supplies go, I'm still sticking with this great online company Sterling Medical. They ship overnight, no one ever calls here, the billing has been flawless. It's great to have a company I can rely on. I also call Hollister if I'm short of supplies for the month and they send extras. When I think back to the trauma I went through when Charlene first had her stoma, it makes me want to cry...for myself!! It's a horror at the beginning, I don't care who you are...that's why sites like Ostomyland are SO IMPORTANT.

Thanks for keeping up with my blog everyone!

Janet Mitchell

Took Charlene to the doctor last week and had such a great visit. We saw her gastro, her surgeon, her gastro's partner, her favorite gastro nurse, and the wound care nurse!! Oh, and we went to the lab for bloodwork! All in one visit. Everything was fine, and we got to spend so much time with her favorite Dr. It was awesome and I feel confident that they all really know what's going on with Charlene.

Since then Charlene has continued to plug along. She's swimming on the swim team, but yesterday got so winded during warm-ups that she could only swim in two events, instead of four. She still gets nauseous way more than I'd like, too. Stoma wise things are going very, very well. We have no trouble keeping her flange on during swimming, and we change her flange much less often now that she has an end ostomy, instead of a loop ostomy. I keep wondering why all the nausea.

Charlene is headed to summer camp on Aug 17th for five days with the Crohn's Colitis Foundation of America (it's free). She went last year and had a blast, even though she was quite sick while she was there. This year will be so much fun since she'll be seeing her friends again and she'll be feeling so much better. There are girls there her age who have a pouch, so that will be awesome for her. Other than that, things are quiet.

Janet Mitchell

We should have a new category on the forum board...Funny Hospital Roommate Stories. WOW! Yesterday did not disappoint. There are three things I like to have when we stay in the hospital. On this pediatric ward there are four chairs for the parents that are better than the others. They are actually brand new, and are sort of trial chairs to see which kind they are going to select to replace all of the chairs. And by chairs I mean the kind that are a chair by day and a "bed" *ahem*, by night. I also prefer the bed by the bathroom, not the hallway. And I like it when we have a roommate that doesn't need to use the bathroom (i.e., a baby, for example). Better still, I prefer no roommate.

Well, when we were transferred upstairs last night (later afternoon really) the first thing I did was having the nursing assistant find me one of the good chairs...and she did! I almost hugged her. I can't even describe how beautiful these new chairs are...and they're SO comfortable. So, that was awesome. They gave us the bed by the hallway, but it seemed that our roommate wasn't using the bathroom...so that was fair. But then it became painfully obvious that we were in for the longest night of our lives...our roommate, as far as we could make out, was a fifteen year old girl from Turkey who had been in a car accident and suffered a traumatic brain injury. She had no family with her, and a nursing assistant had to be with her 24/7 because she tended to get out of bed and fall. Well, the nursing assistant who came in at 6 p.m. begain to "interview" the girl, who spoke very broken English, and in the weirdest tone. But the thing was that since she had a brain injury the conversation was circular. Plus, the nursing assistant was speaking very loudly and very precisely, so as to be understood. She wasn't DEAF, she had a brain injury! Then we realized that our TV wasn't working. So...no way to drown out the conversation. After just two hours I asked to be moved....my wish was granted.

We moved to a room two doors down, got the space next to the bathroom, brought our "super" chair with us, and our new roommate is a seven year old who was hit by a car, and suffered a horrible fracture of her leg...and so she doesn't use the bathroom! She is, however, Satan's spawn. I kid...but we didn't sleep. She's so miserable...she won't take anything for the pain, and, her family isn't here...for whatever reason, so she's over on the other side of the curtain fending for herself. Her anger is understandable. Charlene actually befriended her this afternoon and sat and colored with her...poor little thing. She's doing the best she can taking care of her little self. Her mother calls and talks to the nurse from time to time...it's really pathetic. Anyway, her TV was on SO LOUD last night, for SO LONG, that it took me forever to get to sleep...I'm not actually sure I ever did. I'd love to hear other people's stories...I'll bet they're funny, pathetic and I'll bet there's lots of them....When Charlene was first diagnosed and stayed in the hospital for 19 days we had six different roommates over those 19 days...and each had a story...just sayin'.

Okay, that's my rant from the hospital. Charlene is on the mend. IV fluids have helped tremendously and we'll be home tomorrow or maybe later tonight!

Janet Mitchell

Kathy from England, you're GOOD!! Charlene is, in fact, severely dehydrated and the doctor just called (8:00a.m. in the states) to say that she needs to come in for IV fluids. I'm relieved that dehydration is all that is wrong, on the one hand, but concerned as usual. Kathy, she's not even able to keep water down at this point, but I appreciate your advice so much. I'll keep you all posted...off to pack a bag and get on the road.

Janet Mitchell

Just back from the lab to have blood work done. We don't know what's wrong but she's severely fatigued, dizzy when she stands and nauseous (which started Monday, but now she's throwing up)...and she's not eating. I'm so sad. I have no idea what could be wrong. Her gastro is on vacation but he'll be back Monday and hopefully we can get her in to see him some time next week. Keep us in your prayers...