Kyle

Going home now. The track is open with a tube in place that will stay there another month. Yippee. Kyle tolerated it well. I've had better days but heck it was a great date with my hubby. Taking our child to yet another hospital! We got a milkshake on the way home. Ugh!

Spring

Fwd: Kyle Bean 8-6-05

Spring 

Begin forwarded message:

From: Spring Bean <springcbean@gmail.com>
Date: November 22, 2011 5:38:39 PM MST
To: Marc Levitt <Marc.Levitt@cchmc.org>
Cc: Cathy Bauer <Cathy.Bauer@cchmc.org>
Subject: Re: Kyle Bean 8-6-05

Here is the update on Kyle. The radiologist tried to pass a 5 French with no wire first and couldn't pass it. Then tried and passed a 5 French foley with a wire and got access. Then was able to pass the 8 French argyle tube. We have the 8 French tube in place now.  

I'm glad its in. The radiologist made it seem easy, but I couldn't get it earlier. Kyle tolerated it well. Heading home for a flush now. And I'm breathing again!  

Just to be sure, at this point a surgical revision isn't needed right? (Alan says no). We leave the tube in for a month then start again with passing it daily, right?  

I've asked the hospital to send the report to you. Thanks again for all your support today. 

Spring 

On Nov 22, 2011, at 2:34 PM, "Marc Levitt" <Marc.Levitt@cchmc.org> wrote:

I suggest leaving it in for one month.  And yes, at the one month point the interventional radiologist should recheck the tract with radiologic contrast.  After they insert the tube, the tube can be used.  Happy to see a copy of the study but not vital.

 

Marc A. Levitt, M.D.
Colorectal Center for Children
Cincinnati Children's Hospital Medical Center
Pediatric Surgery, 3333 Burnet Avenue, ML 2023
Cincinnati, Ohio 45229
tel:  513-636-3240  fax: 513-636-3248
email: marc.levitt@cchmc.org
www.cincinnatichildrens.org/colorectal>>> Spring Bean <springcbean@gmail.com> 11/22/2011 4:26 PM >>>
How long will it stay in?  Will we do a repeat fistula gram to determine removal?  I assume it will be safe to use for flushes right away.  Do you want a copy of the study? 

Thanks,

Alan



On Nov 22, 2011, at 1:43 PM, "Marc Levitt" <Marc.Levitt@cchmc.org> wrote:

> Time with the tube in should solve it
>
>
> Marc A. Levitt, M.D.
> Colorectal Center for Children
> Cincinnati Children's Hospital Medical Center
> Pediatric Surgery, 3333 Burnet Avenue, ML 2023
> Cincinnati, Ohio 45229
> tel:  513-636-3240  fax: 513-636-3248
> email: marc.levitt@cchmc.org
> www.cincinnatichildrens.org/colorectal
>>>> Spring Bean <springcbean@gmail.com> 11/22/11 3:11 PM >>>
> We'll get it done.  Will this need to be surgically corrected or will it just need time?
>
> Alan
>
>
>
> On Nov 22, 2011, at 1:00 PM, "Marc Levitt" <Marc.Levitt@cchmc.org> wrote:
>
>> Yes, that is exactly what I would want to happen. They can rescue the tract and get a tube across it.
>>
>>
>> Marc A. Levitt, M.D.
>> Colorectal Center for Children
>> Cincinnati Children's Hospital Medical Center
>> Pediatric Surgery, 3333 Burnet Avenue, ML 2023
>> Cincinnati, Ohio 45229
>> tel:  513-636-3240  fax: 513-636-3248
>> email: marc.levitt@cchmc.org
>> www.cincinnatichildrens.org/colorectal>>> Spring Bean <springcbean@gmail.com> 11/22/2011 2:52 PM >>>
>> This is Alan now. I just spoke with radiology here and they could offer a fistulagram and find where the narrowing has occurred. Then they could pass a tube that we could suture in to temporize the problem. Depending on what they find, I suppose would determine the next course of action. Do you want us to proceed with that?
>>
>> Thanks,
>> Alan
>>
>> On Tue, Nov 22, 2011 at 12:48 PM, Spring Bean <springcbean@gmail.com> wrote:
>> Ok, it typically home care that orders these? How quickly do we need this? Alan said that when stomas like this close they need to be opened within 24 hours to be used again. Should we try to find an interventional radiologist here still? Our home care for malone supplies is Cincinnati Childrens, but I don't know when they would be able to get it to us. Locally, Norco is the home care company that carries these supplies I don't have an account with them, but their number is (208)898-0202
>>
>> SPring
>>
>>
>> On Tue, Nov 22, 2011 at 12:37 PM, Cathy Bauer <Cathy.Bauer@cchmc.org> wrote:
>> Yes.
>> Did you try both catheters?
>> Kim can send an order for the coude catheter. She'll need to know where to send it or it can be ordered online
>> Cathy
>>
>>>>> Spring Bean <springcbean@gmail.com> 11/22/2011 2:34 PM >>>
>> I don't have a coude catheter. I have an 8 French urinary cath with a blue top port and I have the green argyle emergency tube with the green cap.
>>
>> Are we all on the same email now?
>>
>> Spring
>>
>>
>>
>> On Nov 22, 2011, at 11:49 AM, Spring Bean <springcbean@gmail.com> wrote:
>>
>>> I can't pass the tube for the flush. I keep hitting a block. I've tried spinning it while pushing, every angle, having Kyle in sitting, standing and laying, and pushing water through the tube while trying to insert. I can't get it in. My husband (ER doc) has also tried and can't get it in either.
>>>
>>> I've got golightly called in to the pharmacy and I've got a call in to our pediatrician regarding an interventional radiologist. Just waiting for more instruction or info.
>>>
>>> Spring
>>>
>>>
>>>
>>> On Nov 22, 2011, at 11:43 AM, "Marc Levitt" <Marc.Levitt@cchmc.org> wrote:
>>>
>>>> What is the Malone concern?
>>>>
>>>> Marc A. Levitt, M.D.
>>>> Colorectal Center for Children
>>>> Cincinnati Children's Hospital Medical Center
>>>> Pediatric Surgery, 3333 Burnet Avenue, ML 2023
>>>> Cincinnati, Ohio 45229
>>>> tel: 513-636-3240 fax: 513-636-3248
>>>> email: marc.levitt@cchmc.org
>>>> www.cincinnatichildrens.org/colorectal>>> Cathy Bauer 11/22/2011 12:34 PM >>>
>>>> If you'd like we could try Citrucel/pectin, one Tablespoon with food/feedings.
>>>> If that doesn't help and he's emptying well we could start a low dose of Imodium. It sounds like this is going to be very diet related though and it will make it difficult to be perfect.
>>>> I passed on your concerns about the malone to Dr Levitt
>>>> Cathy
>>>>
>>>>
>>>>>>> Spring Bean <springcbean@gmail.com> 11/22/2011 12:25 PM >>>
>>>> Hi Cathy and Dr Levitt,
>>>>
>>>> We arrived home and Kyle started eating and also started having many accidents. Bummer! He has a head cold, but I can't tell that he has a sore tummy from a virus or anything out of the ordinary except the increased intake. I know he has exceeded his carb limits since we got home. I am limiting him more vigilantly now. Also, I suspect the Sucraid (the enzyme for sucrose) is expired so I have ordered another bottle. Once I rule both of these out, I think we can get a better assessment of what his bowels are doing without having complicated factors. If you or Dr Levitt dont agree with my assessment, then please let me know that as well. We got an xray this morning and I'm going to send it to you via email shortly.
>>>>
>>>> Thursday 11-17-11, 15 hours after the morning flush Kyle has a small smear. CARBS: this day totaled 15 grams ACCIDENTS: 15 hours later, small smear. 27.5 hours later, small stool, solid
>>>> Friday 11-18-11 400 cc flush at 8:30 am MST (27.5 hours after Thursday's flush due to travel) CARBS: this day totaled 77 grams (exceeded his 45 gram limit for the day.) ACCIDENTS: 5 hours later. small smear, 10 hours later, medium smear, 10.5 hours later, med liquid stool, 22 hours later, large liquid
>>>> Saturday 11-19-11 400 cc flush at 8:30 am. CARBS: 40 grams carb. ACCIDENTS 7 hours later, small stool, 9 hours later large liquid, 22.5 hours later, small solid - Kyle was cramping and hurting, so started the flush for Sunday.
>>>> Sunday 11-20-11 400 cc flush at 7 am (22.5 hours later) CARBS: 25 grams carb. ACCIDENTS: 4.5 hours later, small formed. 6.5 hours later, smear small, 25 hours later, small stool.
>>>> Monday 11-12-11 400 cc flush at 8 am (25 hours later)
>>>>
>>>> Please advise regarding information needed with relation to carbohydrate intake and stool patterns. For 11-19-11 and 11-19-11 I saw defininate patterns of carb intake, followed by stool. Some of the carb was complex carbohdyrates which is unaffected by the enzyme Sucraid, and some of the carbs was simple sugars which is aided by the Sucraid. Both types of carb produced stool. Therefore I am replacing the enzyme Sucraid and restricting the complex carbs. He doesn't like it and it doesn't give him many options. Eventually we need to decide how to handle it when he eats excessive carbs because it is almost impossible to keep him (or anyone) less than 45 grams of carb a day without being able to use proteins or fresh veggies (based on the constipating diet needed for bowel management). Alan suggested that on those days some pectin or immodium might be what we have to use to keep him clean. However, two problems I see...Should we medicate him for this or just restrict him? Second, his intake is totally unpredictable and after he eats above his limit may be too late to medicate him. Please advise.
>>>>
>>>> Thank you!
>>>>
>>>> Spring
>>
>>
>

November 22, 2011

Kyles neo-malone closed off today. The track must be reopened and then another tube will be sutured in place for another month... Wonderful.

Hospital

> Just a quick note to say we are taking Kyle to the hospital for emergency radiologic intervention because his newly created neo-Malone has closed.
> Wish you were here.
>
> Spring
>
>

Springs email has changed!!!!

Hello everyone,
Important news about my email! I have changed and will no longer be reachable on my Comcast email. My NEW email is springcbean@gmail.com

I still want to get all your wonderful emails, so please update your address books! :)

Spring

Cincinnati trip 3, day 7. Total time in Ohio 25 days so far

Here is the latest update.
Our family is half in Ohio and half in Idaho. Spring, Kyle and Dimitri are in a lonely hotel room far from home. Alan, Lauren and Sierra are in a lonely empty house at home. Sadly it's been an all too familliar experience for us all.

We are doing what has to be done and trying not to get caught on any of the lonely, unfair, angry, hurt, homesick, and irritated feelings that keep sweeping over us. That's what it comes down to for everyone though at the end of the day. I guess some have to not get caught by the giddy, crazy ideas that they get too anyway. It's hard and lonely. We hope this is almost done. We are grateful for the continued support of family and friends. We appreciate you staying by our sides even though these medical challenges seem to go on and on.

Alan left this morning at 7:00 am. Dimitri has talked about dad going to his airplane all day! He has talked about being "all done" with the hotel and Kyles doctors. He has talked about lauren and Sierra being gone " on the school bus" but he means he wonders where they are he misses them!

Kyle misses dad too. He was awake when dad left. Alan told him he had to leave and Kyle shook his head "no". He has been good today but he has asked for a lot of comfort things then refuses them. He isn't good at expressing his thoughts but he is confused at his homesickness too.

I'm really lonely but hanging on. I've not posted much so how could people know what is happening but now I'm sending an update out. The hardest part for me is giving myself a break. This skill has never been one of my strengths. When I had my children the doctors always emphasised how I have to take care of myself. Kyles cardiologist emphasised how we should take care if ourselves through that process too. This has been less life threatening but far more extensive, time consuming and draining than that yet these doctors don't talk about this as if they ignore it it will go away. I sure have met my match this time.

Alan is pulled in so many directions - work, me, the girls, the boys. He is pretty overwhelmed. Dons death still haunts him. His work schedule is strenuous. He wants to take a real vacation- next week!

Lauren and Sierra- they are patiently enduring this as well. They often let me see their biggest feelings (which is normal) and they wish this was behind us. But they are enjoying time with Grandparents and friends. This has made them grow up early and while that's not all bad and they may be grateful later for it, right now it is hard.

The daily time commitment each day is down to maintaince level - one hour a day for the rest of our lives. That's on top of all the other daily care Kyle requires. True it's better than two hours a day, but how can you sugar coat poo? It's a huge devastating new reality - Kyle will never be fecally continent. The silver lining for all you optimists- we can artificially keep him socially acceptable and eventually get him in underware not diapers through strict adherence to a bowel management program. Don't misunderstand me, this is better than chronic soiling, but I'd say it's more of a Brown lining than a silver one.

Kyle doesn't hurt now. The tube stitched in place is gone and his incisions have healed nicely. The fine tuning of his daily enemas is slow and time consuming. Each day his X-ray is clear of stool but each day he has accidents. So each day we trek back to the hospital for more X-rays and wait.

It's possible we can leave tomorrow. It's also possible we might have to stay till Friday or Saturday. We just have to wait and see. Many of you know - I love to wait.;) I definitely recommend all the control freaks in the world have a kid with a few of Kyles issues. It will cure you!

So while required to be in Cincinnati what have we done? We have gone swimming, worked out, gone to the aquarium, the Freedom center, the Harriet Beechers Stowe house, the Childrens museum, read books, watched TV and enjoyed a visit with Alans sister Nicole and her family.

Could things be worse? Yep!. Is it my favorite trip ever? Nope! Am I afraid of what will happen to my already taxed reserves once I get home? You bet! Do I want to go home and have the family back together? Indeed!

As a wise old dragon said, "there are no easy paths.".

Spring

Cincinnati trip 3, day 5

We got up early do we could be done with our two hour "work" by 8:30 and be at the hospital by 9:00. We got an X-ray and then checked in with the surgeons.  About 4:00 pm we got a call back with the days adjustment and that's all we did. We have to wait till tomorrow to make any changes, then wait and observe for another 24 hours.  This is a very slow moving time consuming process. Seems less rewarding to be hanging out far from home than being in the hospital or being on vacation. Probably because of the strain on the family as a whole being apart. All in all it's very stressful and It's  pretty disruptive to be here then home then here then home. Hard to keep the momentum of daily living like this. 

Anyway the boys had fun at the children's museum today. Dimitri is lacking more sleep and talking non-stop which is driving us slightly crazy. Alan and I are in each others nerves a bit.  I checked on Merlin the dog and he is fine. I'll call the girls later but I think they are fine too. 

Spring 

Cincinnati trip 3, day 4

It 11:30 am and I've tubed Kyle, flushed Kyle, gotten breakfast for all, read scriptures, exercised, cleaned the hotel potty and done laundry. Then I tubed Kyle again and showered. Whew! I'm tired. And guess what? This is the daily drill for the rest of my life! Wana trade?

Yesterday the flush didn't go smoothly. It leaked all over Kyle an the floor. So we had to start over. Today thankfully was smoother. After a rough start to the day I worked out and then we went to the Newport Aquarium with Nicole and her family. It was a nice time. We spent all day there and it was 8:30 when we got home. I went to sleep with the boys. Where is my stamina? Crazy!!!

Spring

Cincinnati trip 3, day 2

Well I'm already behind. The alarm went off at 5:30 EST which is 3:30 MTN. I just hate getting up before 7 am body time regardless of time zone. So I feel irritable already. And, three boys are sleeping while I get everything ready. With The young ones this is better, but the old one...well it's typical.

Heading off to start our week of poo.

Now it's over 12 hours later and the boys are going to bed and I'm recounting the rest of the day.

We arrived at the hospital at 8:00 am and sat through an hour and a half of lecture. It was insightful on the challenges preventing more research on incontinence but as for teaching us anything useful for taking care of Kyle, well let's just say we are more informed than most... We learned more about bowels than most people deem socially polite. It's very interesting to learn about how prevalent bowel challenges are. There is very little support for research in bowel treatment because it's not a glamorous problem like heart defects or Siamese twins. I'm disappointed in society as a whole because of this discrimination, but I'm not suprised.

Anyway, I picked out a few tidbits and then we were off to x-ray and a clinic visit. 8 hours later we were done. We had eaten, taken several potty breaks, got Kyles neo-Malone tube removed, learned to cath him, Kyle had a rectal exam done, a flu shot and a g-tube change. We got back to the hotel and I sent the boys away and laid down. I didnt sleep - darn, but I rested and it was nice. Then I worked out and dined at Alan's favorite restaurant - Bob Evans.

Now we are meeting Alan's sister Nicole and her family. They are visiting from Illinois for the weekend. We hope to go to the Freedom center and the aquarium and maybe an indoor water park. Should be fun and tiring.

Spring

Pizza

If Kyle could be "cured" from his food allergies and metabolic disorder he would eat lots of pizza!!!

Spring

Cincinnati trip 3, day 2

The tube that has been sutured in for a month is gone now. I'm free!

Travel back to Cincinnati day 1

We are in another airport bathroom doing a flush during a layover. It's not quite as stressful this time. But it will NEVER make my top ten list. maybe my top ten most hated experiences. Anyway...

I am resigned that we are going and must complete this process. I however have no reserve or patience. This whole thing has really been tough. I just want to pull the covers of my bed up and pretend no one else exists. Sigh.

Spring