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
>>
>>
>