Short Gut Syndrome Parents' Support Group
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Next Support Group Meeting

February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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Bad days

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By: Emily H          (2:36 PM 11/16/2009)
I get so frustrated sometimes when it comes to filling prescriptions. Unless I drive the half hour up to the children's hospital to get a prescription filled, it seems I always have troubles.

This week has been especially frustrating. Usually I time things better so I only have to visit the pharmacy every other week. But Patrick's showing signs of bacterial overgrowth and so it's time to alternate the oral antibiotics he gets. My neighborhood pharmacy has worked wonders in the past getting hard-to-find antibiotics for me in the past. This week, though, when I called to check after they'd had the prescription for several days, they told me flat out that they didn't know how to find it and couldn't fill it.

So I drove up to the hospital to have it filled, but called in the antibiotic that I alternate it with to the local pharmacy. I gave them and hour and a half notice, but when I got there, it hadn't even been started. They told me 15 minutes. 10 minutes later they finally started working on compounding it. I sat there for half an hour watching them try to make the medicine.

I know Patrick's meds aren't easy and always appreciate a drugstore pharmacist who'll take on the challenge.... especially since it saves me a lot of time and saves Patrick exposure. I try to always be friendly and express my gratitude that they're working to help me get prescriptions filled closer to home. But I wish I knew a way to make the process easier! Any of you tried working with a traditional pharmacy for these complicated prescriptions?
Re: Pharmacies
By: Jessie Lynn          (6:03 PM 12/04/2009)
Luckily I live close to a Hospital and the pharmacy has been so good to us, but I can relate, I feel like I spend more time at the pharmacy than I do anywhere else but home and then there's all of the Doctor's visits!
Re: Pharmacies
By: jessica o          (10:04 PM 09/20/2011)
walgreens has been great even for hard to find rx. they have a 1-800 # that you can call to find a compound pharmacy close to you. i hope this helps
bacteria overgrowth
By: Jessica Taylor          (1:50 PM 11/18/2009)
Have you tried gentamicin through the g tube, I started that earlier this year and I has noticed a tremendous difference.
Re: bacteria overgrowth
By: Emily H          (7:19 AM 11/19/2009)
Yes... this is what I was referring to.. the difficulty of getting gent through a corner pharmacy, rather than the hospital
I'm going to have to stop planning vacations!
By: Emily H          (2:57 PM 12/08/2009)
My son is 13 months old and we haven't succeeded in taking a vacation since he was born. This isn't for lack of trying! We've scheduled several. This summer we'd planned a trip to Yellowstone, but cancelled when the day before we were scheduled to leave he got a line infection the day before. He was in the hospital most of the summer.

Every 3 months we have to go to Seattle Children's Hospital to keep him current in his transplant listing. Twice now my husband has come alone and we've planned extra days to have a "mini vacation" here. Every time he ends up having to be hospitalized here instead. Yesterday, we thought we'd made it! We flew in Sunday night and early afternoon headed over to the aquarium. We had just bought our tickets and were in the first exhibit when I looked down and noticed blood on the outside of his line. His PICC line was leaking and so we packed up and took him to the ER here. We've been in the hospital over 24 hours now waiting for them to fit him into the schedule to replace his line. Another vacation opportunity gone.

It's so hard to take him anywhere, and we have so little money to spare, that I'm wondering if it is worth it to continue to try for a family vacation after all. I'm beginning to feel a bit cursed.
Family Vacations
By: Renee          (8:43 PM 01/03/2010)
A family Vacation for us has never panned out. Except the ones we take at the Hospital. You can actually have your own suite, whether it be in the Infant Med/Surg Unit, the Children's med unit or any other place they try to fit you in (yes, I am kidding.) But really, try to change your attitude about vacations. This won't be forever, and yes, it is hard on everyone in the family. You have to take day trips whenever you can fit them in. We took a day trip out to Antelope Island for a picnic with HopeKids last summer. My 2 year old loved the horses but on the way home, he began throwing up blood so we took a detour and headed up to the Emergency room. He struggled with internal bleeding all summer. Just plan frequent day trips, most will be cancelled and there is nothing you can do about that, but there will be a few priceless family times, even if they end up in that place we have the love/hate relationship with (PCMC- we love that they are there but we hate having to be there.)Our kids have what they call "Medical lives" and it's OK. It definitely is extremely challenging, but I know none of you would trade your kids for anything. Save the large trips for when they are older (they say that line infections slow down a lot as they grow.) I try to build memories by doing simple extraordinary things frequently on ordinary days. For New Years we had a little party and played games with the cousins. Our 2 year old was so excited he couldn't sleep so we let him get up and play and he made it until 11:45pm. Every hour beginning at 6pm we opened a sack that had a different activity in it. We went outside and painted the snow with colored water in spray bottles. We played a glow-in-the-dark game, we tried to see how many peanut m&m's each of us could throw up and catch in our mouth when they did the second count-down on television. My family will not forget this party for a long time. Right now, these are the only kinds of things we can do. Focus on the things you can do. Just remember that it's OK, It won't last forever. I remember seeing a picture of Christ that featured the saying: "I never said it would be easy, I only said it would be worth it."
Re: Family Vacations
By: Emily H          (11:02 AM 01/16/2010)

Thanks for the reminder! It really does come down to the little moments.. those are what makes having one of these special children in your life such a miracle.

I think we all know that, in the moment of stress it's easy to lose perspective. And that's where I was when I wrote this post. Unfortunately, I got a big dose of perspective in the days to follow. Patrick's broken PICC line revealed that the veins that they'd use to access PICC's in both arms have clotted and are no longer usable. We ended up having a broviac line placed in Seattle instead. Nothing quite like having surgery done at a somewhat unfamiliar hospital. Then, to make matters worse, he aspirated during surgery and as a result was struggling breathing and spiked a fever when he came back from recovery. Eventually, they called in the critical care team from the ICU who were able to help stabilize him and the next day he was doing well enough that you'd never guess that anything had been wrong.

Since then, we've been very blessed. He's getting progressively healthier and stronger and actually making some developmental progress. We may have spent most of this time at home, not on vacation.. But at least PCMC is maintaining it's title as our "summer home" so far. We haven't had any long stays so far this winter (knock on wood).

Thanks again for sharing and reminding me that it's ok to have "medical lives" sometimes.
Aspen Grove Vacation
By: Renee          (9:28 PM 01/03/2010)
Last fall we booked a three day vacation at Aspen Grove. The reason we chose Aspen Grove was that they had individual family cabins with complete kitchens to enable us to prepare TPN's. The days were scheduled with many activities for the whole family including fun games and activities for our other children, and even built in babysitters for the young ones so Moms and dads could go to parenting seminars together. We could not take advantage of the babysitters however because our short gut kid, then 11 months old had too many medical things they were not trained for of course, but we thought it would do us all some good to get away. On the way up the canyon about 10 minutes before we reached our destination, our baby got car sick. As we piled out of the car the staff at Aspen Grove wanted to take a fmaily picture, but all we wanted to do was get signed in and go to the cabin so we could clean up! I took over 1 dozen extra outfits, chux, 2 cases of diapers and a case of wipes with us. The first night, we went through every item of clothing we brought for our baby and we used the entire case of wipes! Obviously he didn't adjust well to a differenet surrounding either. I was so overwhelmed but then I think we all were. I spent the next morning driving back down the canyon in search of a grocery store to purchase more wipes and laundry soap and made a call to GI clinic to see if we could give our baby dramamine! They did have a washer and dryer in the cabins but they were coin-op. I did bring a roll of quarters but I really didn't think I would need them. Surprise, Surprise! I won't bore you with all the details but on the last day, I was able to spend an entire afternoon at a very enjoyable seminar. My husband took a turn with our baby but by then, he was fine and so we stuck around and took photos of our kids in the outdoor play town and around the canyon. My teenage kids enjoyed their ropes course, swimming, and everyone enjoyed having all the meals cooked and cleaned up for them. This was a small vacation we will never forget, so if you happen to get the chance, take it but be prepared for mishaps much larger than you expect.
She is perfect to me.
By: MrsFitz          (1:07 PM 01/07/2013)
Today I have requested a meeting with all the doctors and surgeons. To up date you all my daughter was born with ileal atreasa ( her intestins were not connect in the small bowel). She does not have short gut but her treatments are exactly the same as SBS. about 3 weeks ago she had a feeding tube put in and a fundo done. they expected great things from this and that she should get fat and go home beginnig of this year. Well that was not the case. Sadly we are still in the NICU waiting for her to come home. But oddly enught is not the comming home that I am saddened about. It that I have no answers and for me that where I am lost. I see this beautifull girl who always smiles and greets you with a grin from chek to chek! All the docs love her and even the nurses ask when they are able to hold her next. She is a joy and she is perfect to me. I cry because she smiles, still through all this she smiles. All that these kids go through they still smile. It amazes me and opens my eyes each day to say something good about that day instead of something bad.
NEC/SGS ostomy dumping im so overwhelmed
By: shelbie          (7:56 AM 11/05/2014)
my name is Shelbie, I am 18 years old I gave birth to my first child at 29 weeks he was prematurely delivered at 29 weeks at 14 days of life had almost his entire colon removedwe were in the NICU for 3 months working closely with wound care specialist and finding what works for my son I feel as if recently I have received no respect from our team of doctors and nurses I can't afford cohesive seals to keep my son skin from breaking down and recently he has started dumping we have a formula that will keep him from dumping but in the meantime what do I need to do to make his stomach feel betterit breaks my heart to see all of my friends children smiling and reaching milestones meanwhile I'm not sleeping ever I haven't gotten a full nights sleep since August 21st and I know the reason why my son isn't smiling is because he's in so much pain he is now weighing 12 pounds and taking Elecare orally I can't seem to keep a bag on his stomach because he's dumping but I can hear his stomach gurgling all day the hospital will not take me seriously as I was there yesterday I just need to know that this will get better if there's any tips or tricks to help him become more comfortable it would be greatly appreciated

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