# J-pouch Obstruction Surgery



## QueenGothel

The plan is we will be waiting at home for the phone call letting us know when her room is ready. Either tomorrow or Friday they will go in laparoscopically looking of obstruction at the ileostomy anastomosis and looking for anything that could be obstructive.  Praying it is an easy fix. It has now been over a month with the same symptoms of dilation, burping, and low output via j-pouch. Two different diagnosiss one a false positive c.diff test, the other pouchitis both were treated both didn't correct the symptoms she is having. Scared, worried, second guessing my descision to not going to Cincy.:confused2: I really hope it is a speedy recovery and this thread will be nice and short. 

Thanks all! :ghug:

May her weakness turn to strength, suffering into compassion, sorrow into joy, and pain into comfort for others.

Prayer is not asking. It is a longing of the soul. It is daily admission of one's weakness. It is better in prayer to have a heart without words than words without a heart.” 
― Mahatma Gandhi


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## Tesscorm

I'm so sorry Rowan isn't better yet!!!  So not fair that you, Rowan, your family have to go through so very much!

Praying with you that this is a quick fix and that all can settle down in your life! :ghug:  :ghug:  :ghug:


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## Mylittlesunshine

I'm so sorry you are going though this. 
I how Rowan makes a speedy recovery
And everything goes to plan x 
((((Hugs))))


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## Farmwife

:kiss:Hugs to you and Rowan from Grace and I. :kiss:
We need to get these two together and see which one is the prettiest princess!


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## my little penguin

Hope it goes well.
Sending you positive thoughts


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## Devynnsmom

((((hugs))))


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## kimmidwife

Sending hug and prayers!


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## DustyKat

Thinking of you Mary and Rowan and hoping more than anything, like you, that this is an easy fix. :ghug: 

Sending you mega loads of love and healing thoughts across the pond...:goodluck: 

Dusty. :Karl:


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## Catherine

Hugs


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## Johnnysmom

Praying for you and Rowan today.  

You have a great hospital and a great team of Dr.'s and they are going to take good care of your baby.  Cincy is always here if you need it.  

(((((Hugs)))))) momma!


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## Clash

Sending hugs and prayers!


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## QueenGothel

Shouldn't be long now. Waiting for them to call us down to the OR.  The consent form was hard to sign... Laparscopic exploratory, adhesion removal, with possible laparotomy, resection, stoma creation, blood transfusion.  Ugh feel a bit sick to my stomach now.


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## DustyKat

Oh Mary...my heart goes out to you both...:ghug::ghug::ghug: 

You are both in my thoughts and prayers, :heart: 
Dusty. xxx


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## Mylittlesunshine

Mary I hope everything goes ok
Thinking of u both
Will be watching for update


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## QueenGothel

Just talked to the Surgeon, Plan A appears to be a success some of her bowels are still hung up giving her an enema and going to see if things start flowing.  Still holding breath...but he said there was a ton of scar tissue around the ileostomy anastomosis. They *think* they have it fixed it laparoscopically.


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## kimmidwife

Yay! So happy to hear good news, wishing her a speedy recovery. Sending healing thoughts her way!


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## Tesscorm

Praying for a quick recovery for Rowan!!! :ghug:  :ghug:


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## Farmwife

Hugs
So happy to hear the good outcome!:dance:


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## Johnnysmom

That is great news!!!





:dance::dance::dance::dance::dance::dance::dance::dance::dance::dance:


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## QueenGothel

Just had a consultation with the surgeon said she had a lot of scar tissue really running amuck in her, from her ileostomy anastomosis all the way down to her ovaries and tubes.  Said they did there best to cut it out. Said to give her time to heal, but to remember that there was so much down there by her reproductive organs. This is not very normal but to have it rechecked before too long, for it could effect her abilities to have children later on. (Endometriosis, is what I though) They gave her an enema and things seemed to have been moving he said. Also said her recovery will probably be a long time bc her small bowels were so plugged up and dilated for soo long.  (Never meet this surgeon before, he was pretty nice) took everything in me to say no crap she has had a dialated bowel and symptoms for over a month now.  This is our third admittance and finally they listened.  Score 1 for mommy intuition. I freaking knew it all along.  Happy she is going to get better but still a little bitter that they (the fellow) had me thinking I was a nutjob.


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## Devynnsmom

(((hugs))) I hope she's feeling better soon. Hopefully now that things are moving, things will get back to normal. Poor baby.


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## Dexky

I'm sorry your vindication came at an all too high cost!  I suspect that fellow had better dance lightly should you cross paths again!  Hope she's feeling better soon mom


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## AZMOM

I hate when it sucks to be right. . But am SO GLAD that relief is in sight for your sweet girl. Whew..............what a roller coaster!

(((Hug)))

J.


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## Crohn's Mom

Big giant squisy hugs Mary ! 

Hope her recovery goes smoothly, and I hope you can get some rest !

oh, and p.s.
 Screw that fellow and how he made you feel ! :hug:


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## QueenGothel

Yes the fellow I am sure will be avoiding me like the plague. She had best anyway. Busy day tomorrow must get Row up and moving per doctors orders. Getting her bowel to wake up, the scar tissue broken up and bowel set back to where they are supposed to be. Figured I might as well have her medical records corrected or at least copies of the ID doctor consult from the previous stay to have the c.diff retracted or whatever they do.  I have to get a list of all our appointments we have had in the last year so her secondary isurance can pay us our gas mileage back and forth. Lots to do. 

I get to go home and sleep in my own bed tomorrow looking soooo forward to it.


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## kimmidwife

Mary,
 I am pretty sure endometriosis only occurs in menstruating women so it probably would not be the cause. However you never know.
Link to article about endo.:
http://www.medicalnewstoday.com/articles/149109.php
What could be the cause is a good question. Some people form scar tissue differently then others. This article I found about adhesions is very interesting and may be a clue as to what was going on:
http://www.dailymail.co.uk/health/a...p-Like-millions-organs-stuck-scar-tissue.html


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## QueenGothel

Oh yes I am aware of the fact that she needs hormones to have endometriosis, two of my closest friends have had hysterectomies bc if it. It just through me for a loop.  Thanks for the link but I am not even going to click them for now.  lol. Too sleepy.

Rowan is on IV Zosyn waiting for the infusion to be done.  Wonder what this is for?  Nothing like giving antibiotics and not telling the mom why.  :voodoo:


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## Catherine

QC,  I had scarring on of unknown origin which connected my ovaries and tubes.  My surgeon said the most common causes are endonetriosis, previous surgery or infection.  I was given a 2% chance of ever having children.  I had 6 hours of microsurgery to correct the damage, this was over 18 years ago. I have three children.

Methods of treatment have improve so much since my surgery and will only improve further in the coming years.

Wishing Rowen a speedy recovery.


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## Sascot

Seemed to have missed alot.  Glad all went well (well done to you for fighting for her and getting it right!) and they managed to sort it laparoscopically.  Hope she recovers well and things go smoothly this time!  Maybe the antibiotics are just because of the surgery.  Even with Amy's cystoscopy they had her on an antibiotic infusion and 6 days of oral.


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## NMMom

Hey Mary, 
You all have been through hell.  I'm so hopeful this nightmare is almost over and you and Rowan and your family can try to find a semblance of normal.  You have been a huge inspiration to me about not giving up and trusting our mother's intuition.  I pray that I have 1/2 the strength you do.


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## QueenGothel

Thanks everyone, so thankful I have you all.

Spoke with the attending and he explained when the bowels have been so dilated for such a long time sometimes the body naturally thinks it is sick and might send false signals, fever, vomiting, etc. said that they don't want her to do these thing bc they she just had major abdominal surgery. They only do this antibiotics for 48 hours following surgery. 

I also spoke with the head nurse, and she is very blunt and upfront like I am we always talk and hit it off when we are here.  She was asking me what the heck are you doing back? Gave her a history as I see it.  She then said this is not good you don't trust us  anymore by what you are telling me.  I explained that I have my issues right now, not that I am not thankful for all they have done but yes I have a couple of complaints and feel that these issue cause me to have fear and distrust moving forward.  She has arranged for me to have a meeting with the head of Ped Surgery and her surgeon to discuss the short coming that have occurred. She feels that if I am comfortable with this and talk it through I will feel better about proceeding and not transferring to Cincy. I told her I don't quite know if Rowan would ever have another large surgery here again, I was here basically bc I felt I was between a rock and a hard place due to my family dynamic at home with my mom not being well and all the other issues.  She said regardless if I feel her medical records are not right and there mis-diagnosis after mis-diagnosis and possibly a reason for it, it needs to be investigated further and corrective actions taken so this does not happen to another child/family. 

I feel a bit better just talking it over with her. I don't know if I will be able to get it all out to these big honchos like I can with her, bc like I said I have built a relationship with her, never intrusive.  Where as I can be intimidated easily by the attendings.  Hope it goes well and my words can flow well to give them a good idea of how I am feeling, and validity to the reasons I feel this way.


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## Tesscorm

OMG, YOU have done such an awesome job looking after Rowan and her diagnosis, treatments :medal1: that it's the Drs who should be feeling intimidated!!!  But, I know what you mean...   once the adrenalin rush is gone and Rowan's out of danger, it's not easy explaining their shortcomings to them!...    Don't let them get you tongue-tied with their terminology!  You knew what was going on better than their own staff!  Remember what you've done and keep those vice-grips hidden but close at hand! :thumright:  You deserve the opportunity to express your concerns!


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## Mylittlesunshine

Hope the meeting goes well, 
I know what u mean as when I see 
Lucy doctors I always get stressed
And end up tongue tied, 
So I always make notes so I don't 
Forget , maybe when u go meeting 
Write notes before hand and keep them 
Close just in case x
Hugs to u both you are a fab mum x


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## Johnnysmom

If you do end up talking to them about your issues with Rowan's care just take the perspective that you are there to make their program better and to help other kids.  It may be hard for them to hear but moms like you who speak out get things changed.  

But, if you are exhausted by all of this and just want to take your baby home and not think about it for a while, I can totally understand that too.  

I am glad Rowan is doing better and you had a chance to talk to someone.


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## QueenGothel

I have decided to talk with her surgeon not the head guy.  I also wrote a letter.  Undecided.  I think I have to let her try and fix this.  I like her, Rowan likes her, she will need follow up care even if I got an opinion at Cinncinati. I am already working on a plan B. it is just in my nature. I want them to review Rowans case if more symptoms persist.  

She did well with the sips of water and a Popsicles today.  She walked a lot.  She seems to be well.  She had BM and gas out.  So all in all a productive day.  She had some pain but the IV Tylenol seems to help a lot.  Hoping to go to PO Tylenol soon, we will see. NG tube was out early morning.  Played in the toy room. 

I have today and all day tomorrow to hang with my youngest, looking forward to surprising her.  Good night all!


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## DustyKat

Oh Mary...:hug::hug::hug:...you have both been through so much and yet your strength and resolve to be the best Mum and advocate for Rowan never wavers. Perhaps a letter is the way to go even with a meeting. Doing it this way will allow you to say what needs to be said without the fear of emotion taking control. At the end of the letter set out the points you want discussed. When you meet with the doctors have a copy for each person present and ask that they read what you have written, take a little time to reflect on it and you will then discuss the points listed with them. You control the meeting rather than the other way round. 

Pouch surgery does have the potential to cause scar tissue around the reproductive organs. 

It is so good to hear that Rowan is recovering well  and there is no better footing than that for you to have some well deserved quality time with your little one. Have fun Mary and I hope you are able to find some peace and relaxation. 

Lots of love. :heart:
Dusty. xxx


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## Sascot

Glad things are going well and Rowan is up and about.  Enjoy the time with your youngest!


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## Dexky

I think Dusty has some great advice about the letter.  Hope you guys have a great day!  I'm sure she'll be happy to be unleashed!


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## QueenGothel

Rowan is eating her Popsicles today, they are waiting to advance her diet even though she has passed a lot of gas and is having BMs. The attending is different of course, each one has a different approach, some are more conservative than others.  It is hard to swallow when she had all the signs of obstruction they were quick to feed her now that she is starving and had the lysis of adhesions they are being more precautions about feeding her even though the latter seems less of a worry in my eyes.  I guess I can wait just want to get her out of there.  There is a lot of droplet precaution kids on the floor and don't want to catch the flu or anything.  Rowans nurse went home yesterday early after vomiting so I just want my bubble back and my kids at home again. 

I wrote the letter, idk I might just make a list of points I want to talk about rather than spilling my guts out in a letter. It is hard for me to write my feelings out and not come off as I was right you were wrong... and I think I can discuss it calmly now that the fog seems to have cleared a bit. Thanks for the advice.  Her doctor won't be back until Tuesday now.


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## Tesscorm

Hope you both can get some rest now and are able to go home soon!

As her doctor won't be back until Tuesday, you have some time to reread your letter with, perhaps, a less emotional eye as the days pass.  But, whether you go ahead with the letter or just discuss your concerns, there's no question your issues are valid and should be taken seriously! I'm sure the doctor will appreciate the 'feedback' from a parent like you! :ghug:


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## DustyKat

Thinking of you both Mary and hoping and wishing that you get to break out very soon...:ghug:

As far as the docs go...you do what you are most comfortable with hun. :hug: 

Dusty. :heart:


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## QueenGothel

The only apprehension I have is I don't want to be one of "those moms", that the doctors avoid bc I seem difficult.  Even though I know I did the right thing and would not do anything different except maybe taken her to Cincy a month ago. Damn hindsight gets me everytime.  I don't want to come across as ungrateful but I am still a little mad that it took so long to get the answer that I thought was obvious. This extra time would probably do me some good to really think about what I want to say and shorten it up and remove some of my feelings from it.  Sticking with facts and the issues I have had.


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## DustyKat

I understand and hear you Mary. :hug: It can be a very fine line between getting your point across and burning your bridges. And you are far from alone with hindsight! It surely is a bitch of the first degree! :voodoo: 

You will know what is right Mary and knowing the people involved you will know the right tack to take. I personally don't believe that there are wrong or right ways to behave here Mary, just different ones. Trust your gut hun, it won't let you down.  

Dusty. xxx


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## QueenGothel

They are not planning to advance her diet said that her upper abdomen is still too distended. Idk if they are uncertain if they have fixed the issue with the lysis of adhesions or not. Planning to give her a suppository to get things moving my guess is this will do nothing. Trying to stay the coarse and not let my mind wander too much. So much uncertainty makes me worry.  Why can nothing ever be easy for her.


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## QueenGothel

The only words I am hearing loud and clear are mystery, complicated case, completity of diagnosis, uncertainty, and a lot of we don't know.  I just asked her surgeon for a better explanation or a transfer via email.  On my way in there now so I can speak directly with the attending.  

Does Cincy have shared rooms or are they all singles?  I am hoping for a single room.


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## my little penguin

Hugs...
Not sure on shared room vs single at Cincy
We only did outpatient.
I will ask around for you


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## my little penguin

Brochures seem likely to be single rooms
Waiting for another mom I tagged .

As of four years ago the rooms were singles .


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## QueenGothel

Her belly has grown and her pain level has worsened.  Paged the doctors to come and reassess.


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## QueenGothel

I fear she will be moving into the theatre before I can get her to Cincy. Per xray her small bowel looks like a large bowel this is how badly she is distended now.


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## Sascot

Sorry to hear things are not going well.  Hope they manage to get things sorted for her.  Wish there was some sort of magic wand to make it all better!


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## momoftwinboys

Catching up.  So sorry Rowan is having such a rough go. Hang in there.


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## AZMOM

Mary   - why?  What are they saying? Is this all through the nurse or have you seen the doc yet?? 

Praying for you (and of course, Rowan!).


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## Crohn's Mom

Oh no ! 
Mary, what is happening ? 
You're poor baby - why can't they figure this out ?!?  
Hang In there - big virtual hugs coming your way.


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## upsetmom

:ghug:...My heart goes out to you and your family.

I hope they figure this out soon your poor baby has been suffering too long.


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## QueenGothel

We have saw a Doctor, not the Doctor, (whom has spoke with the attending the fellow and Rowan surgeon) the gave her another NG tube to try to decompress her bowels.  She won't talk and won't quit crying saying that she is ugly and people will laugh at her.  They will start the process to have her medical records transferred for a second opinion with Drs Levitt and Péna at Cincinnati Colorectal center, which is The First and Most Comprehensive Pediatric Colorectal Center in the World.  Just hope we can get her there safely and quickly.  She is finally asleep, waiting for X-ray tech to take a picture to check for proper placement of the NG tube.


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## AZMOM

Precious girl..... 

GLAD things are moving forward!!!!

More prayers. 

J.


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## my little penguin

Hope your transfer is quick and safe.
Hugs


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## QueenGothel

The NG tube has helped a lot.  They think they fed her water too quickly and that she has yet another ileus.  They want me to wait this out and see. Idk if I can do that, still requesting to push forward for a transfer.  Apparently it takes a couple days to do this.  Frustrated and wishing this would just end.


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## my little penguin

Glad the ng tube is working.
Keep pushing for the transfer 
Since they don't know why and are just guessing
The tube give you a little time .


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## StarGirrrrl

Mary, I am so sorry to see what you, Rowan, and the rest of your family continue to go through.

If my thoughts are worth anything then your instincts have already been proven correct many times, and you should continue to use those as to what to do next.


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## Catherine

Thinking of you all.

Keep pushing for transfer.


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## kimmidwife

Thinking of you guys! My first thought when you said she was getting distended again I was wondering if they fed her to fast. Sometimes it takes a few days for the bowel to get moving again. I am praying for her that that is all it is. I do agrees its you though to keep pushing for the transfer. It is time for a new set of eyes to look over her case. Sending hugs and prayers!


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## QueenGothel

Thanks, we are checking for UTI tonight.  I guess it can cause an ileus. PICC line tomorrow for TPN.


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## Mylittlesunshine

I'm so sorry Rowan is going though
All this, I hope u find some answers 
Soon Mary, (((hugs))) x x


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## QueenGothel

Still waiting on the PICC line for TPN.  She is not responding to anyone including myself, just laying in bed completely sad and broken.  It is hard to watch.  

When the team rounded today I took the time to get everything off my shoulders and really told them why I am having such doubts moving forward.  They said that I cannot live in hindsight and that they had a big meeting and Rowan was the center of the meeting the attendings that switch are very informed of Rowans case now and they don't want me to move her to Cincy.  They said this is something that is going to take time for her to heal from. That unfortunately she has had a rough month. That there mis-diagnosiss are not mis-diagnosiss but in fact were real but Rowan had an obstruction in addition to these other issues that was over looked. They expressed their concerns that they want Rowan better and really think this all occurred bc they fed her too soon. 

My DH does not want me to move her to Cincy. If I take her I will be doing it alone, which he supports but unfortunately someone needs to work and someone needs to take care of my youngest daugther. I dont know what to do at this point.  I am torn with the transfer, and the trauma it will cause moving Rowan to Cincy.

I am going take some time to think about it further.


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## crohnsinct

Oh Mary!  My heart is breaking for you and poor Rowan!  I will keep praying!


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## Tesscorm

Mary, I don't even know what I can say that will give you any support!!  It seems you have been fighting for Rowan for so long...  :hug:  :hug:  You have so much strength, thank God Rowan has you!!!

I can only send lots of hugs and tell you I am thinking of you and Rowan and praying that things begin to improve SOON.  :ghug: :ghug:


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## xmdmom

I'm so sorry that Rowan is so sad and has had such a rough time!  I feel really sad thinking about her lying on the bed not responding. She's very lucky to have you advocating for her, though it certainly is difficult for you.

"That there mis-diagnosiss are not mis-diagnosiss but in fact were real but Rowan had an obstruction in addition to these other issues that was over looked."   Hmm they missed the fact that she was obstructed by scar tissue.  That seems to be a big miss since I'd think it would be right up there in the differential diagnosis.

Does Rowan like animals?  Is it possible for her to have an animal companion visit? I know some hospitals offer this and it can do wonders for a little one's spirits.  http://www.dogheirs.com/elleng/posts/826-giant-schnauzer-helps-sick-children-feel-better 

Sending positive healing thoughts your way.


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## Johnnysmom

I wish I had some wise advice for you, but this is a tough call.  I understand all of your concerns and I am not sure what I would do at this point either.

I will pray for you to have clarity in your decision.

I am here in Cincy if you decide to come and need extra support.

It would make me feel better that Mott's feels confident and doesn't want to move her.  I would look that DR. right in the EYE and say, 'if it was your kid what would you do? because I am losing confidence here.'  

Do you feel like Rowan's case is just out of the ordinary and the Dr.'s made assumptions about the most obvious causes first and that is why it took them longer to find the obstruction?  Or do you feel like they have not followed protocol, missed important signs, and failed to listen to you about symptoms that should have pointed them in the right direction? 

What does your gut tell you?  You have been spot on so far.

xmdmom- excellent idea!   I think that would really brighten Rowan's day.


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## AZMOM

Praying Mary. For relief for Rowan and wisdom for you and your DH. 

For what it's worth, when Claire was 'down and out' after 2 wks inpatient, a visit from one of the therapy dogs worked wonders for her morale when I just couldn't. Might be worth a shot.....

Hugs and more hugs,

J.


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## my little penguin

Hugs 
Vey tough decisions
Hoping the night gives you the clarity to help with your decision .
Can they give a reason why this happened that is valid and a good plan forward.
We loved Cincy but ours was outpatient so a little easier decision.
Would some pics of others kiddos with Tubeys help.
I know a friend went to build a bear and made a Tubey bunny.

That seemed to help.....


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## kimmidwife

Mary,
Like the others said my heart is breaking for,you guys as well. Rowan has been through so much. It is a very hard decision to make to transfer or not. Can you call over there tomorrow and speak with them and see if they feel they can offer other options or different treatment ? If they can't well then it would make sense not to move her but if they feel they have something more to offer then that might be the way to go. Sending hugs to you both.


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## Mom2fighter

Mary, I am so sorry to hear all that has been going on the past few days. When is enough going to be enough. It is a tough decision whether or not to transfer. I think if you could speak to dr. in Cincy to see if they could offer more. Unfortunately they are not going to speak to you unless Rowan is an established patient or your dr. is calling on your behalf to make a transfer. See how the next 24 hrs goes if there is an improvement. You could always go there as an outpatient for second opinion & decide then if you want to continue.
I am praying for you & Rowan. I hope her spirits will be better maybe if she begins to feel better. I have no doubt you will make the best decision for her & your family.


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## Farmwife

Sorry Mary, I've been out of the loop.

Your in my thoughts and prayers. 
Rowan is a fighter and that spirit will come back. It has to, she's your kid.:hug:
I think the therapy dog is a great idea.

Hugs to both of you!:ghug:


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## QueenGothel

Johnnysmom said:


> Do you feel like Rowan's case is just out of the ordinary and the Dr.'s made assumptions about the most obvious causes first and that is why it took them longer to find the obstruction?  Or do you feel like they have not followed protocol, missed important signs, and failed to listen to you about symptoms that should have pointed them in the right direction?
> 
> What does your gut tell you?  You have been spot on so far.
> 
> xmdmom- excellent idea!   I think that would really brighten Rowan's day.


I feel a little bit of both.  I feel in the initial stages they thought the c.diff was causing an ileus which is so incredibly rare. (Obvious cause)  I think they should have looked into it further and that when I asked for that ID consult a month ago. For I was so certain not that she didn't have c.diff but that she did in fact have a obstruction. I shouldn't have been denied that consult.  But do I dwell on something that was so long ago.  I am trying to let it go.  

I don't even know if I should listen to my gut anymore bc my I am having some major anger issues.  I do feel a bit better, but will my mind let this go. Yes eventually, but now no I am pissed off still bc my kid is still going through so much and I blame that fellow for it.  Granted will I meet another fellow that is just as arrogant in Cincy?  Probably.  

Am I moving her bc I think her care would be better or am I moving her bc I am mad.  That is the real question. I think I things went wrong they might have a better opinion if this is mobility issue.  I have no idea what could be going on in her little gut.  

A reason to keep her here is they did just do the lysis of adhesions and many of these surgeons have a clear picture of what they have to work with.

Torn completely. Part of me wants to move just bc the are #1 colorectal center in the world.  I know I'd have the best set of eyes imaginable.  Many of these doctor know Dr. Péna there and did their fellowship with him.  But if this is just a feeding issue and bowel rest will cure it I will waste a lot of time and money and stress on her for nothing.


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## QueenGothel

FYI I got her to go down to the toy room in a wheel chair and do some sand art.  She won't walk bc her NG tube moves when she walks and it scrapes her throat.  It is a very big tube. They had a dog come in the and she was excited when I returned (went to eat) to tell me his names was Latte. She actually talked whilst my mom was here.  But has clammed up since.  They never got the PICC in for TPN, they said they were going to do PPN tonight but have not came to do it yet.  I told them if she blows a vein we are done with the PPN. Her IVs are getting old and I don't think they will last much longer. She has one in each hand. They gave her a back up when she was in the OR.  Hoping tomorrow is a better day.


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## Dexky

I vote for Cincy, even if it's just to ease your mind a little!  Hope things get better for her and soon!


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## DustyKat

This is how I see it Mary...

From what you have said about going to Cinny it shows that this isn't just a fleeting thought but as you said you are torn. Having this depth of emotion says to me that going to Cinny will never be regretted. 



> Am I moving her bc I think her care would be better or am I moving her bc I am mad.


I only see one answer from these two questions Mary. The better care speaks for itself, the being mad says to me that you have likely lost trust and faith in your current doctors so I really do think you need a another set doctors suggesting the way forward to you. 

Even if the best doctors in the world say exactly the same thing as the docs now what is better than having those world class docs validate her treatment. 

Thinking of you both, always. :heart:
Dusty. xxx


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## AZMOM

I completely agree!!!!! however, playing "devils advocate" I don't know that I wouldn't see how today goes. IF she's improving, I don't blame you for wanting to get her through this crisis and home before "starting over" to minimize the trauma for your baby. 

I can only guess how wrung out you feel. But your gut instinct has always been right from what I can see. Trust yourself to do the right thing!

J.


----------



## my little penguin

I think it's traumatic no matter what you do.
You still are not at home no matter which place your at.
Travel time to get home is a few extra hours so why not go for the best
So she is not a "one of"
But something they deal with on a regular basis .
Fwiw our Gi trained at Cincy which is why we went there for our 2 opinion.


----------



## crohnsinct

How is she doing today Mary?  I was going to add that once trust is gone it doesn't matter where you are you will drive yourself crazy. If you are anything like me, any little thing that goes wrong or bad call they make you will blame yourself for staying.   If you do not trust her docs anymore perhaps it is time to move on and if you have an opportunity to go to the best well then why not grab it.  As long as she can travel and you won't be alone (you have friends in Cincy!).  

Whatever you decide though I am sure it will be the right thing for Rowan...you haven't let her down yet!


----------



## NMMom

Mary, 

I am so so so sorry I'm just now catching up with what's been going on with you and Rowan.  I want to jump on a plane and come out there just to hold your hand and give your sweet little girl a big hug.  

I just want you to know that whatever you decide you won't make the wrong decision.  I'm inclined to say take her to Cincy just so that you won't look back and second guess yourself.  The doctors now have spent long enough "admiring" her situation progress and now it's time to take action.  

Please know you are in my thoughts and prayers.  There is a mom here in NM i know who takes her son all the way from here to Cincy for treatment.  You have lots of people to reach out to but there is another on if you need it.  

Hugs and Prayers.


----------



## QueenGothel

Well today her belly distention has gone down, she let some gas out last night like a long release like letting the air out of a balloon slowly. We are waiting for a doctor to evaluate her she is covered in a rash on her chest and back. Also she has had a significant amount of blood come out of her NG tube. Which is new considering the last two days it has been all clear mucous only.  I have a letter drafted to the head of the department hear requesting a consult from Cincy.  If in fact they do not think we can make this happen doctor to doctor without doing a transfer I think I will be transferring her care.


----------



## my little penguin

Hugs wish it didn't have to be so hard


----------



## AZMOM

Glad the belly distention is better!  And surely to goodness they WILL help you with the transfer. 

J.


----------



## Farmwife

Hugs. I wished we lived closer.


----------



## kimmidwife

Hugs Mary for both of you.
Glad she is passing some gas and the distention has gone down. What are they saying about blood comming out of the NG tube? Rash sounds like an allergic reaction. Maybe to the antibiotics? I agree with the others maybe it is time for that transfer. I know it is a hard decision. We went through it one year after Caitlyn was diagnosed and her doctor kept saying her continued pain was psychological. We pulled her out of that hospitals and flew to New York for a second opinion. I know this is more comp,instead because she has just had surgery but if they do a hospital to hospital transfer they should be able to take her by ambulance and transfer her rather smoothly over. Keeping my fingers crossed and praying for her to continue to improve.


----------



## my little penguin

http://depts.washington.edu/surgstus/Clerkship/Lectures/print/BowelObs_Mann.pdf

in case you haven't seen this one


----------



## QueenGothel

They added some beta blockers apparently NG tube plus TPN equals stomach ulcers.  Idk if that is real the blood only occurs when using the portable suction device and when she is up and moving.  PICC is in, IVs are out.  I bit annoyed that she doesn't have a double lumen.  They need to draw blood work daily and waste now.  She is anemic again, not bad bit still I don't want to make it worse. She played more today.  Going to bring up SIBO to the attending and see if they will test her for it.

Thanks all and MLP thanks for the link. Still on the fence, leaning towards transfer, going to give this TPN a little time to work.


----------



## Sascot

Sorry to see Rowan is still having a rough time.  If I had to put my two cents in, I would say if given the opportunity - go to Cincy.  Otherwise you may always wonder if things would have been better if you had transfered.  At least you will know that they are a specialist centre.
Hope today is a better day and she starts to feel a bit better.!


----------



## QueenGothel

I have drafted and sent the letter off to the head of the department requesting the Cincy consult.  I technically cannot move her now bc she is considered post op still.  They are finding out the logistics of it all though regarding insurance what will be cover and what will not and if Cincy is in network for us.  I have been told today in all honesty that I have turned in to that mother that they avoid. This saddens me bc I was really trying to avoid it.  I have been frustrated on a few occasions and voiced my opinion probably when I should have kept my mouth shut.  I hope this hasn't hurt my child in the long run. I am hoping that I can move on be forgiving. Working on it!


----------



## NMMom

Don't you ever, ever, ever second guess what you have done for Rowan.  If any of those doctors, fellows, residents or nurses put themselves in your shoes they would realize they would do the same things and be the best advocate they could be for their child.  Hang in there.  You are an awesome mom!


----------



## StarGirrrrl

QueenGothel said:


> I have drafted and sent the letter off to the head of the department requesting the Cincy consult.  I technically cannot move her now bc she is considered post op still.  They are finding out the logistics of it all though regarding insurance what will be cover and what will not and if Cincy is in network for us.  *I have been told today in all honesty that I have turned in to that mother that they avoid. *This saddens me bc I was really trying to avoid it.  I have been frustrated on a few occasions and voiced my opinion probably when I should have kept my mouth shut.  I hope this hasn't hurt my child in the long run. I am hoping that I can move on be forgiving. Working on it!


Oh FFS!!

Who "turned" you into that Mom then? Their screw-up's!!

Mary, if anyone has hurt Rowan it is NOT you it is certain Drs there and the overall failure to listen to you.
:ybatty:


----------



## my little penguin

As others have said you are NOT that mom.
They don't like being questioned and the reality is if they knew what was going on you would be able to trust trust them. They broke the trust not you.
Every doc I know welcomes a second opinion especially on complicated cases and especially if the child is still suffering. Ours practically pushed us out the door - his words were we just need to get DS feeling better it doesn't matter who does it.

Shame on them for making you feel that way.


----------



## dannysmom

I am wondering who told you that you were that mom they avoid?  (the nurse?) If they really do try to avoid you then I hope you can get to Cincy soon. I hope Rowans feels better soon too!


----------



## Dexky

Amen!  To all the above!  At this point, it's surprising you aren't running the halls screaming and crying!  I wish you and Rowan the best with the consult!


----------



## Farmwife

Are you pushy??????? Probably!
Are you a straighter talker?????? Defiantly!

But YOUR attitude is what has got Rowan this far.
Did you not tell me that you had to transfer her to Mott's from another hospital?
Did it not save her life?????

The problem with this forum is you can't see us face to face but we're all behind you!
We love and care for you both!:kiss:

I do understand about wanting to leave on a good note. Hang in there.:heart:


----------



## QueenGothel

They are being nice.  I actually talked to Rowans doctor and she was urging me to not discuss my feelings with people other than the attendings... The resident that asks how I am doing doesn't really want to know all of it... just how am I doing compared to yesterday. She just doesn't want them talking and saying things to the attendings and others.  She doesn't want me to be that mom as I was telling her I was trying to avoid it.  She told me her interpretation of the information that she received today about me.  I don't fault her for this bc she know I am a straight shooter and I expect the same in return.  I am fine with it.  She just wants me to do what I said I would do and put the hindsight where it belongs now that I have officially sent a complaint.  I am ok with that.  Honestly I needed to send it to be able to move on.  It is kinda a feeling of releif.  

I think my biggest issue is that I didn't jump around during that first stay, I am pissed that I allowed that to happen, I should have told Rowans doctor a long time ago how things went down. How upset I was.  I do take some blame for I cannot expect her to fix something that she knew nothing about, now she gets it dropped on her after things are such a mess. Granted at the time I didn't think Rowan was in danger and this situation would have been a result, I was trying to allow myself to trust at the time. I just chose the wrong moment to trust, and since I have built this giant wall and won't let anybody in bc my survival instinct is in full predator mode.


----------



## QueenGothel

The only medication she is on now is Zantac bc of the NG and TPN.  She is not in need of any pain meds, antibiotics or anything at this time. Her labs were all spot on or at least close to normal range.


----------



## kimmidwife

Mary,
 As the others said you have done nothing wrong. Don't let them tell you otherwise! I am glad to near she is doing a little better. may it only continue!


----------



## crohnsinct

Nope!  Sorry!  You are NOT to blame one bit!  You did what we are all encouraged to do...trust the docs!  I don't understand why they didn't pull her doc in and keep her advised anyway.  Seems like a no brainer to me.  

Hun, I know about that trust thing and the wall and full out predator mode. I am right there with you but you are not to blame!


----------



## kimmidwife

Mary,
How is Rowan doing today?


----------



## AZMOM

Checking in on you too. Hoping no news = improvements. 

J.


----------



## QueenGothel

She still has the NG and is still outputting quite a bit.  She played a lot today our friends from camp met us here today, it was a nice meeting they are a family of 6 and 3 of them are 5 and under so Rowan was so excited to see them. We went to the conference room where every Thursday they have pizza and our friend Bob sings songs and plays his guitar, Rowan loved it and our friends got up there and sang along with him.  She couldn't eat pizza though but this didnt seem to bug her, she did not complain. 

She pooped twice and farted a lot.  This made me happy, very happy.  

The dept head replied today that he would be looking further into Rowans case and would be getting back with me soon after he reviewed it and spoke with a few different people. 

Tomorrow at 9am she is scheduled for another enema contrast study.  not looking forward to it the last one was terrible, her dad is coming to help me hold her down for it.  Sucks!  It is what it is. I wish they'd just put it in her NG tube.  

Going to get some sleep. Thanks for all the confidence and support.  I think I just suffer from Cindy Brady syndrome where I feel like I tattle tailed, I still know it was the right thing to do.  Tearing down the walls daily, they are still working out the logistics of the consult in Cincy.  Hope the pipes just start working... this would be a blessing. 

Time for some stand up comedy via iPad and Netflix. Laughter is the best medicine sometimes!  Good night all, ill catch up on all your kiddos very soon.


----------



## dannysmom

Happy to read she had a nice day   I wish they could give Rowan something to relax her during the enema! Hope it is not too terrible today. Please do not feel bad about your 'tattle'. Good should come from it - even if for the next complicated case.


----------



## Farmwife

So glad to hear she had some fun with friends.
I'm glad she not begging for food. Grace has yet to ask for the any food. I think they know the feel better, so why make it worse.
Hugs to you both.


----------



## QueenGothel

Her belly looks normal today for the first time in a long time.  She had 3 bm's yesterday and passed a lot of gas.  I am hoping this study shows her belly to not be so dilated anymore. If so they might remove the NG tube. Or at least switch her the independent drainage. This would be so nice, if she can get that thing out. She is so miserable with it in.  She actually says I hate this tube in my nose.  More to come fluoroscopy at 9:30am


----------



## QueenGothel

Still loopy but dilation is less than it was.  Bc of the recent bm's and gas they have changed her NG status from wall suction to independent drainage.  If she becomes distended we will have to go back to wall suction. Hoping we are moving in the right direction now anyway.


----------



## Mylittlesunshine

That's great news Mary . How is Rowan x


----------



## Farmwife

That's great news! I hope it continues!


----------



## QueenGothel

We will still be here for a while.  Maybe weeks, bc if the need for bowel rest and TPN. Ugh!  Not very cool to hear.


----------



## QueenGothel

So quickly how things change, they just told my DH. That my information was the priliminary results, now that the radiologist and the surgeons talked they think she still has a narrowing of the ileostomy anastomosis.  They want to start feeding her water tomorrow to see what happens. I it goes bad preparing me for exploratory laparotomy surgery next.  Idk how well I am dealing with this information right now.  I am thinking balloon dialation at least so she can have a break.  I am not comfortable at all right now, still waiting on the Cincy factor which seems to be going very VERY slow. Frustrated still, got my walls back up, trying to not speculate outcomes.  Sounds like a vicious circle of future issues. They want to do the laparotomy to be sure and feel with their hands to know what exactly is going on vs the laparoscopic technique.  Thoughts?


----------



## Dexky

Well, the only thing about any of your and Row's experience that I know anything at all about is your worry about the "vicious circle of future issues".  And Mary, you just can't let that rule you.  You do the best you can with what you have right now!  And we all know you've done nothing less than that!  Of course you're not comfortable!  No parent could possibly be!  God bless you all!


----------



## NMMom

Oh Mary, I'm sorry.  My heart hurts for you, your family and Miss Rowan.  I know your mind and emotions are up and down but I want you to know that kids are so amazing and resilient.  Once these health issues get taken care of she will bounce back to a happy healthy little girl.  I so wish you all were closer - I've told Ellie about Rowan and she wants a friend who 'understands'.  

Let me know if you need anything!!


----------



## Sascot

Sorry to hear things are getting more stressful again. Unfortunately not much you can do but roll with the punches and keep getting back up.  Wishing you loads of strength! :hug:


----------



## DustyKat

Oh Mary...:ghug::ghug::ghug: 

My heart breaks for you hun. :heart: I know the feelings you have about not being that Mum and taking matters further. I faced the same this time two years ago. As strong and competent as you are you still feel so alone and vulnerable. You are there for child and you shouldn't have to be thinking for everyone else, least of all the doctors. Unless they have walked a mile in your shoes then they don't understand the pain and helplessness you feel when you can only sit by a hospital bed and wish and hope with all your might that it was you in the bed and it would all go away. Jesus, when will they ever realise that we don't want to be there and given a choice we wouldn't. :hug: 

I was not in the situation you are now Mary when Sarah was facing surgery. Sarah was undiagnosed but she had been suffering for so long that I wanted them to open her up and look at and feel what was happening to her. 

Always in my thoughts and prayers Mary. :Karl: 
Dusty. xxx


----------



## QueenGothel

The good news is her belly looks normal enough for them to try to feed her the water. She is acting normal and not sick, but this has been going on for months now. I asked them to not pull the NG in fear that they will just replace it again in a couple of days.  Idk what they plan to do...  my guess is they will want to still remove it. I hope all goes well. I just don't like the idea of adding more scars to my kids already very scarred abdomen. Thanks all for the advice.  Trying to stay calm and not break stuff.


----------



## QueenGothel

They removed the NG, still NPO until tomorrow.


----------



## DustyKat

Thinking of you Mary and sending loads and loads and loads of love and luck across the pond. :heart::ghug::heart:

Dusty. xxx


----------



## AZMOM

Just checking on y'all, Mary.  Rowan get to have anything today?

J.


----------



## QueenGothel

She had 5 bm's day before yesterday with NG in no suction, 3 yesterday with it out, gave her about 16 oz of water total today and 1 BM.  We are trending in the wrong direction. Preparing for surgery mentally now. .


----------



## my little penguin

Hugs


----------



## xmdmom

Could it be that there's just not anything in her gut to come out at this point since she's been npo for a while?


----------



## QueenGothel

Idk, DH said she was a bit firmer this afternoon, she was soft in the belly this morning.  Worried bc I am at home.


----------



## kimmidwife

Hi Mary,
 I was thinking what Xmdmom said maybe because she has nothing in there less came out but I don't like to hear she is getting former again. Sending lots of hugs and prayers your way. I am just hoping we hear good news from you tomorrow and no surgery is needed.


----------



## QueenGothel

Yes idk how that works in the past when she has been NPO she still had bm's all the time it was just all bile. It has been all bile for the last 4 days. She did have that contrast enema to they used Gastrografin so it might have emptied her out so might be why we saw more. 

I am just sick with worry, my mom is up the they are having a sleep over.  It doesn't even feel right not being there. Why can't anything ever be easy for her, like cross the T's dot the I's and help my kid and let's be done with it.  We have been waiting for 11 days now and then what is going to happen?  Another 2 weeks of TPN you know she is going to get another ileus from them playing in her dilated intestines.  I am just so worried, it feels like there is like a big hole in my chest. Worst feeling ever. I just dread going in there tomorrow, and hearing them drop the bomb on me.  

Probably going to be doing a follow through study again where she drinks the Gastrografin, I be damned if we are leaving that f'ing machine without watching it with my own two eyes.


----------



## QueenGothel

Sorry I need to change my tune. Tomorrow is going to go great.  I got to have hope. I don't mean to worry you all, either. I need her home.  I get stressed out.  If you haven't noticed. I have got to restore my faith. Nothing is in my hands and I don't like to not be in control. She is going to be fine, I know it.


----------



## QueenGothel

Rowan got distended again today with just an 8oz glass of LF milk and 4oz LF ice cream. She is NPO again, fluoroscopy scheduled for tomorrow. Same stuff different day. Soo frustrated still. No word about Cincy:thumbdown:


----------



## Farmwife

Hugs Mary. I'll be praying for you both! We love you guys!


----------



## my little penguin

More hugs and calming breathe to you


----------



## Crohn's Mom

Goodness, I'm so sorry for all she and you are going through.
Somethings gotta give soon ! 
:hug:
hang in there momma
:hug:


----------



## Johnnysmom

Praying for some good news tomorrow.

Cincinnati Children's was shut down today because of Martin Luther King day.  I couldn't get into any of the labs for Johnny's blood draw.  Hopefully they will get back to you tomorrow.  

Keep that chin up Mary, you and Rowan will get through this.


----------



## kimmidwife

Continuing to send prayers and hugs!


----------



## Clash

Sending hugs and prayers your way.


----------



## Tesscorm

Keeping you and Rowan in my prayers!  :ghug:


----------



## QueenGothel

Am I insane or has this been going on for too freakin long or what?!? 45 days same symptoms.  Ugh!


----------



## Tesscorm

You are certainly not insane!!!  I can't believe you have been dealing with this for so long without an answer yet! :ymad:  Praying and wishing that you finally get an answer soon!!


----------



## AZMOM

Tooooooo long!  You are NOT crazy!


----------



## Sascot

Definately not going mad, I would be too!  With that amount of time I would also have expected them to have treated her and everything getting better!  Thinking of you.


----------



## xmdmom

45 days of not clearly knowing what's going on and a lack of sustained forward progress.. ... it seems time for the second opinion.  Hang in there!  Sending positive thoughts to you and Rowan!


----------



## NMMom

I hope that today brings better things for you and Rowan.  You are all in my thoughts and prayers.  I went to my first support group this weekend for Crohn's and Colitis.  There were people I  was able to meet who have been through so much (much like you and Rowan!) and are now living normal, healthy lives.  I know that you all are going to get through this and that you'll look back and wonder how you made it through but you will have done it.


----------



## kimmidwife

checking in to see how Rowan is doing?


----------



## QueenGothel

Well that was forever.  Drank the contrast at 8:45am she just got done at 2:45pm.  5 hour transit without a colon.  Talked with the radiologist he didn't see a narrowing is still reviewing the imagining.  Waiting for the doctors to come talk with me.


----------



## QueenGothel

Her current diagnosis is an ileus. They are going to review her case again and talk with the group of Doctors again about her case. I really hope this is fixable.


----------



## kimmidwife

Thinking of you guys continuing to send hugs and prayers!


----------



## AZMOM

Hoping today brings the news you both need!

J.


----------



## QueenGothel

Well her surgeon came down and said even though her follow thru appear like there was not an obstruction she is finding it hard to believe that all of a sudden Rowan got am mobility issue.  She has the doctors information at Columbus (not Cincy)  whom is the mobility guru, but says that they will not deem her a mobility issue unless tissue and muscles samples are taken.  She has scheduled Rowan for an exploratory laparotomy for tomorrow afternoon, she also will take the muscle and tissue samples to collect for mobility study.  She says she wants to fix her and doesn't believe the follow thru results are correct even though it was performed perfectly. So fingers crossed she finds the obstruction and Rowan doesn't have a mobility issue which would require her to be on long term TPN.  Very nervous of course and scared.


----------



## my little penguin

Are they thinking mitochronidal disease ?

Hope the surgeon gets in there and can fix her up quickly.


----------



## QueenGothel

They haven't label her yet. Idk what that is.  Soon to google.


----------



## my little penguin

Don't google it trust me....
If it is mito
I know a few good moms who can help you
Until then not worth the extra stress . Kwim


----------



## QueenGothel

Too late.


----------



## QueenGothel

I want to throw up.


----------



## my little penguin

No it's very rare.....
Trust me I know a few moms whose kids have it
Most find out by time they are two or three .
Most have way more than R going on with multiple systems not just Gi.
Other one may be etlhers danlos - it can effect motility 
But the muscle biopsy made me think mito .
Sorry to have mentioned it


----------



## xmdmom

I am feeling concerned reading what's going on. I don't understand why the surgeon proposes an exploratory lap when there is no evidence of obstruction on imaging.  I know surgeons want to fix patients especially if they think they made the problem in an earlier surgery, but I'm not sure about "going in".

What kind of motility issues do they think she now has? If she never had them before, they don't just suddenly appear -- that would be extraordinarily rare, I think.
Motility can be affected by electrolyte abnormalities, drugs and even infection.  I saw a case report of Cdiff that caused prolonged ileus as a sole manifestation http://link.springer.com/article/10.1007/s00384-003-0541-9?LI=true 

I would think genetic type causes of hypomotility would be very far down the differential diagnosis and not a reason to do surgery. I would want a second opinion if there is time and no emergent reason to have another surgery.


----------



## xmdmom

I really don't know what I'd do if I were in your situation.  You certainly have a better sense of your doctors, than any of us can.  I am sending lots of HUGS and well wishes to you and Rowan.


----------



## QueenGothel

There actually are two purposes for the lap one to explore and find obstruction and the other to take the tissue samples.  All of her numbers are spot on, electrolytes, infections, CBC, I think they are a bit stumped and want to test her muscle.  I don't know what to do at this point but the doctor in Columbus said that she needs an ex-lap to rule out a blind loop causing it and the need of the muscle samples for testing.  I don't know. She made it out to be like this is what is required to rule everything out in order to move forward.  She doesn't think Rowan has a mobility issue. The only thing that worries me is there is no bottle neck anywhere. Even her jpouch was dialated but granted she was also on the vanco which caused her to have pouchitis. I don't know, I just know enough is enough and I can't keep doing this anymore. :yfrown:


----------



## Farmwife

I wish I could type to say how I feel but I can't.
All I'll say is your in my thoughts and prayers. I wish I could do more but I think that's the best thing I can do.

Love ya guys!


----------



## crohnsinct

This is just beyond believable at this point.  I am so so sorry you are having to endure all of this and poor little Rowan.  We are all hoping and praying for you both!


----------



## QueenGothel

I never thought I would be hoping for a resection.  This is just way too much.  I need therapy.


----------



## Farmwife

Make room on the couch for me. 

HUGS


----------



## Tink572

Just catching up on your sweet Rowan. I am so sorry she is going through all of this. Praying for you all.


----------



## QueenGothel

I just sent her doctor a note bc I want her thyroid tested I have severe Hashimoto's thyroiditis and I want her levels checked.  My sister just called me and told me Hashimoto's can cause an ileus if untreated.


----------



## AZMOM

Mary - you are a great mother and I know you won't let up. Wish I could do something besides grimace and clench my fists on your behalf and your sweet baby's behalf. 

Hug, prayers and more prayers,

J.


----------



## Dexky

QueenGothel said:


> I just sent her doctor a note bc I want her thyroid tested I have severe Hashimoto's thyroiditis and I want her levels checked.  My sister just called me and told me Hashimoto's can cause an ileus if untreated.


What do you take as treatment?

Hang in there Mary…the poor girl, bless her!


----------



## QueenGothel

Dexky said:


> What do you take as treatment?
> 
> Hang in there Mary…the poor girl, bless her!


I take a loaded dose of Levothyroxine, and unfortunately I still get nueropathy in my left leg all the time.  I actually have had to cancel 3 appointments for myself recently bc I am still so symptomatic, my plan is actually to start taking LDN and maybe thyroid armor to try to treat all my hormone levels, where the Levothyroxine is just T4. Been reading up on it and there can be a lot of hormones that are out of whack and just correcting the T4 makes me appear on paper like I am ok but I still get symptoms from not treating my T1, T2 and T3 doctors believe that treating the T4 should correct all the levels but this is not always the case hence why many people with Hashimoto's get a secondary auto immune issue.

Just got her numbers back and she was within normal range, though 4.14 TSH is higher than she should be. I will keep an eye on it. Still going in to the theatre... Scheduled for 11:15am


----------



## QueenGothel

She is out of the theatre.  Just had the consult, Doctor said her omentum was wrapping itself all around her upper intestines, she removed it completely.  Been an issue since first surgery. Very large thick adhesions all over the upper part of her intestines. She is 90% positive she fixed her. She has a catheter, NG tube and an epidural pump.  Still on TPN. Waiting to see her now.


----------



## crohnsinct

Sounds promising!  Give her extra hugs and kisses from her forum friends!


----------



## Sascot

Really hope the surgery helped!  Sending lots of healing thoughts!


----------



## QueenGothel

Oh and they gave her a revision of her original wound bc the wound vac left it not so pretty so it looks a lot better.  Hoping the pipes work well in the next few days!  Thanks everyone.  :rosette1:


----------



## Jmrogers4

Thinking of you and hope this fixed it.


----------



## Farmwife

I hope her pipes work well too. Are you feeling better mom? Do you think this is what was wrong?


----------



## Dexky

I have no idea about T1-4 but that's the most hopeful you've sounded in a while so praying and hoping for that 90%!!


----------



## QueenGothel

lol Dexky that was my hashimotos I was talking about.  The important thing is the doctor thinks she fixed her, so this leaves me hopeful.  I think I was losing my trust bc there was so much uncertainty before. The Fellow whom was in surgery with Rowans doctor actually said the omentum looked like a big spider on top of her upper small intestines which was weird bc she had no surgery there so they were a bit surprised to see so much adhesion's so high up not related to her surgeries.  Even though there was no clear obstruction, basically if this doesn't fix it she has a mobility issue that I will have to see a specialist about.  Praying we do not have to do that and this was her fix. I am still nervous, but yes very hopeful!  Her doctor giving me a 90% certainty is not her style she is very conservative and never talks like that but to see her doctor smile like at last a success, was so refreshing.  She can be very pessimistic (doesn't want to give false hope), so to hear optimism is refreshing.


----------



## Farmwife

Well that's great to hear. 90 percent is good odds. You both deserve some good news.
HUGS to you both.


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## QueenGothel

oh and they didnt take any tissue samples or muscle samples bc they said her anastomosis sites were both open and were not thickened at all.  they didnt want to cut into her bowel so she would have aclean surgery and would heal up faster with less chance of infection.


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## Tesscorm

I'm so happy to hear this news!!!  It does sound good!!!!!  :kiss:


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## Mom2fighter

So happy to hear that they think this will help. I hope this will be a step in the right direction and Rowan will be feeling better with each day! Sending hugs and still keeping you both in my prayers.


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## NMMom

You all deserve a break!!!  Here's hoping to a fast recovery and a smooth road ahead!


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## dannysmom

WOW! I surely hope that finally resolved her problems.  The omentum ... WOW!  It is too bad the omentum cannot be visualized better on imaging.


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## kimmidwife

Mary, wondering how you guys are doing? Praying to hear good news!


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## QueenGothel

She is not in any pain.  Has an epidural, (delaudid) doesn't want to do anything but watch tv, won't talk with the NG in, it is still pretty soon after surgery.  I am supposed to get her up in a chair twice today. Not looking forward to that struggle at all. Just wishing, and hoping, and thinking and praying and waiting.


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## kimmidwife

The epidural is definilty the best thing! It was a miracle for caitlyn when she had her surgery. Don't let them take it out to soon. Caitlyn had hers in for three or four days. She had a little trouble walking because of it but was able to do it with two people supporting her. By the time it was out she was on her way healing up and barely needed any pain medication. Send Rowan hugs and tell her she has lots of people thinking about her and wishing her to get well quick!


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## Mylittlesunshine

I just wanted to wish Rowan a greAt big
Get well soon from me and Lucy x x 
Also to say Mary you are a great mum 
And your doing a wonderful job x x


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## QueenGothel

She sat in her chair for about 2 hours we played Sorry sliders.  Then she slept for 2 hours. No pain.  She gasped for air a few times today and it freaked me out, I told the nurse, the doctors, pain management.  They weren't concerned. Said she was doing good. She also is getting IV Tylenol.  I get to go home tomorrow until Monday morning. Nervous!


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## Mylittlesunshine

So glad Rowan is doing well
Tell Rowan everyone is thinking of her 
Here and Lucy says Hiiiii


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## DustyKat

Oh my goodness Mary...:hug::hug::hug:...so, so much that you and your sweet girl are going through. 

I hope, wish and pray more than anything that the surgery has resolved all of Rowan's problems, bess her. :heart:

:getwell: Rowan! 

Are things still going well post op hun? 

Thinking of you both. :ghug:
Dusty. xxx


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## QueenGothel

She walk down the hallway yesterday.  Her incision looked a bit pink yesterday, they might open it to drain. I am hoping it looks better today.  The catheder is irritating her they might take it out, and see if she can pee without it with the epidural. Idk yet. I don't like being at home.  My mom is supposed to go there tonight, but if she starts having more setbacks I might just go to the hospital tonight. Waiting is the tough part.


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## QueenGothel

She pulled out her epidural this morning, so catheder is coming out next.  Trying to decide what iv meds to give her while avoiding an ileus. Ugh  hoping the delaudid doesn't wear off too fast.


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## KazT17

Sorry to hear that, I was afraid there would be a sudden surge of pain when my epidural came out, but it didn't happen, honestly. I have been following this thread and so hope this last op fixes things for Rowan. You are a fantastic mum. Best wishes xxx


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## QueenGothel

Not an easy day for her.  They didn't give her a double lumen picc last week like they were supposed to. Soo they tried 3 times to get an iv in an failed all 3 times. She is getting nothing for her Pain now.  WTF?

They are adding dilaudid via pca.  Which of course is not compatible with tpn and lipids.  Poor kiddo


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## dannysmom

Oh boy ... I hope they figure out how to get pain relief quickly.


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## CarolinAlaska

Wow what difficult path you and little Rowan are on, Mary!  I'm so happy to reach the recent post about the surgery and adhesions, etc.  I pray that she will not develop any more adhesions and that she can move on in healing and get on with life!  Hugs to both of you and thank you for sharing your journey with us -through the good, the bad and the ugly.  Sorry I haven't been able to read through this until now...


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## DustyKat

In my thoughts Mary and Rowan...:ghug::heart::ghug:...and sending much love your way. 

:hang:  Mary! You are doing so wonderfully well for your precious girl. We are all thinking of you and are with every step of the way. 

Dusty. xxx


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## Farmwife

I hope the pain comes under control.
Hugs to you both!


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## my little penguin

Hugs... Your doing a good job mom.
Watch a good flick to tonight just for you it will help you regroup


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## QueenGothel

They decided to try iv tylenol and toradol.  I don't like toradol bc it is an nsaid don't know if it even matters now bc she technically doesn't have UC anymore.  It was that or morphine I picked the less of two evils.  Trying to avoid that darn ileus from sticking around for too long.  She hasn't had any real pain since the epidural came out.  Hoping to escape without any more setbacks.  Drs say her incision looks really good. My mom is going there tonight. Hope it is an uneventful evening for both of them.


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## kimmidwife

Toradol actually works really well for pain and hopefully used short term should have limited side effects. Continuing to send healing thoughts!


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## QueenGothel

Ng is coming out today.  2 BMs yesterday.  Waiting on the gas!  Hoping for no more setbacks. Doctors orders are walk walk walk!


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## Farmwife

So glad to hear. HUGS
No walking outside. Up here we got a foot of snow with an inch of ice on top. It's crazy up here! It's raining!


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## QueenGothel

Weather is terrible here too.  Waiting to drive there for the roads to be better


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## Mylittlesunshine

Glad Rowan is doing better x 
Hope for a speedy recovery 
Hugs to u both x


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## CarolinAlaska

Glad for the good report.  It will be so good to get Rowan home, won't it?!


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## Jmrogers4

Glad she is doing better, be safe driving.


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## kimmidwife

Waiting to hear how her day was. Hope the roads improved so you were able to drive there with no problems.


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## Mylittlesunshine

Any news on Rowan x how is she today x


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## QueenGothel

She is much less tubular now.  She just has her PICC line and TPN.  She is trying clears today and maybe yogurt or Nutren jr tomorrow.  She got a horrible allergy to the adhesives. Her back from the epidural looks like someone burned her with a hot iron.  Her incision is all red and puff from her itching it.  She is taking IV Benadryl and Tordol and hydrocortisone lotion.  Seems to itch less and now it just needs to heal.  I hope her incision is not infected. I can't really tell bc it is so red from the allergy.  We are told to watch if it spreads.  She is happy and talking again.  I hope this is the end of this bridge. It ended up being much longer than I expected.


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## Farmwife

Glad to hear the progress. My son and I have allergy to adhesive also. After the bandage it removed, we brake out in blisters. Paper tape is the only thing that doesn't hurt us.

HUGS


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## kimmidwife

Mary
do glad to hear the update. Baby steps! so glad to hear she is happy and talking. let us know how the eating goes.


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## Jenn

I keep hoping for the best for you two!

Alex is sensitive to rubbing alcohol now. I used it to remove some heart monitor patches after he had  laughing gas for stitches last summer and hoo boy did he react! Thought it was the adhesive, but we finally put it together why he'd rash up after his blood draws and Humira injections too.


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## CarolinAlaska

Jenn said:


> I keep hoping for the best for you two!
> 
> Alex is sensitive to rubbing alcohol now. I used it to remove some heart monitor patches after he had  laughing gas for stitches last summer and hoo boy did he react! Thought it was the adhesive, but we finally put it together why he'd rash up after his blood draws and Humira injections too.


Speaking of rubbing alcohol, I've heard it is good to avoid it while on Flagyl (metronidazole) due to the potential of causing an antabuse reaction (vomiting etc)...  FWIW


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## KazT17

Hi, how is your little girl today? Xxx


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## Devynnsmom

How is Rowan doing?


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## CarolinAlaska

How is Rowan today?  Is she progressing nicely?


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## QueenGothel

Full liquid diet today, maybe nutritional shakes tomorrow and less TPN.  Or food and less TPN.  No pain meds anymore except occasional tylenol by mouth, benadryl for itching where the tape was.  She gets her first real shower tomorrow.  I hope she feels good when she wakes up.


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## CarolinAlaska

Wow!  She's doing great!  I hope she wakes up feeling great tomorrow too.


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## Devynnsmom

Sounds good! I hope she wakes up feeling great!


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## Farmwife

So glad to hear!

HUGS


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## QueenGothel

Food today.  If all goes well home tomorrow.  So glad I packed a bag before I left and now have less to carry tomorrow.


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## Jmrogers4

Glad she is doing well, that is great news


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## Sascot

That's really good news, it'll be great to get her home.  Hope all continues to do well.


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## QueenGothel

Of course that Doctor I don't like and knows I don't like her is on this weekend.  She is postponing our departure.  We might be gone on Saturday now.  We shall see if she knocks down Rowans TPN tomorrow.  She shouldn't need it anymore being she has taken in her calories required to be off the TPN.  Frustrated a bit but trying to not show it.  Everything seems to be going well.  She ate a lot of food today and handled it very well.


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## CarolinAlaska

QueenGothel said:


> Of course that Doctor I don't like and knows I don't like her is on this weekend.  She is postponing our departure.  We might be gone on Saturday now.  We shall see if she knocks down Rowans TPN tomorrow.  She shouldn't need it anymore being she has taken in her calories required to be off the TPN.  Frustrated a bit but trying to not show it.  Everything seems to be going well.  She ate a lot of food today and handled it very well.


That is wonderful!  It wasn't long ago that she was doing terribly!  I'm so glad they found the problem and were able to fix it!:thumright:


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## KazT17

Fab news. Hope you get her home soon xxx


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## Dexky

I know you are fit to be tied!  Good luck breaking out!  Good to hear she's doing so well!


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## Tesscorm

So glad Rowans doing so much better!!!  I hope you can get home ASAP!!!


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## Farmwife

I hope the time goes by fast and you guys have a safe trip home.

HUGS


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## Devynnsmom

So glad to hear she's doing so well


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## Jmrogers4

Hope you get to go home soon.  Glad she is feeling so much better


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## QueenGothel

They still haven't titrated her TPN and she is eating everything in sight.  DH is taking tomorrow off so I don't get arrested for attacking a doctor.  lol he is literally worried I might jump over the bed and smack her.  lol I would never...:queen::biggrin:


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## kimmidwife

So glad to hear she is eating and feeling better! :dance: :dance: :dance: !!!!


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## QueenGothel

They titrated her off the TPN in 3 hours yesterday, if she keeps pooping and eating she might come home tonight. She slowed down last night hoping its a fluke. A little worried. Waiting for DH to call with good news.


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## Devynnsmom

It HAS to be a fluke!! You need your baby home Good luck, everything crossed !


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## QueenGothel

I am trying to have her CRP and ESR tested before she leaves.  She hasn't pooed much today, belly is still soft, they plan to release her today.


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## xmdmom

ESR and CRP can be quite elevated with surgery and for some days after-- don't know if this happens in all types of surgery but would check with the surgeons.

I'm so happy that Rowan is getting out of there.  Hope it's smooth sailing from here on out!


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## QueenGothel

Rats... Oh well still good to know those numbers to make sure they are trending in the right direction for her follow up.  I think I will just have her pediatrician check these numbers she doesn't mind adding them on when she does nutritional and metabolic panels.  I don't know why her surgeons think it is such a big deal. No poo today. I don't know if I should let her be released if she doesn't poop.  She should be pooping more she doesn't have a colon. Maybe this is her new baseline. Or maybe I am crazy. I feel like whenever I question the labs they are irritated with me...:ack:


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## CarolinAlaska

QueenGothel said:


> Rats... Oh well still good to know those numbers to make sure they are trending in the right direction for her follow up.  I think I will just have her pediatrician check these numbers she doesn't mind adding them on when she does nutritional and metabolic panels.  I don't know why her surgeons think it is such a big deal. No poo today. I don't know if I should let her be released if she doesn't poop.  She should be pooping more she doesn't have a colon. Maybe this is her new baseline. Or maybe I am crazy. I feel like whenever I question the labs they are irritated with me...:ack:


The irritation is that they don't know anything more than you do probably.  You've been at this a long time and there are so many things that make the answers not straight forward.  Being questioned means they have to take time that they don't have to find answers that don't come easily.  Surgeons are limited in their knowledge except when it comes to surgery.  Peds are limited in their knowledge except where it comes to general peds.  GIs are limited in their knowledge except where it comes to GI issues.  Some diseases are so complex it is impossible to know everything about them and Crohn's is one of them.  Be patient with your health care providers, they really do want to help you, and probably underneath their facade they are as frustrated with things not being an easy fix as you are. :kiss:


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## AZMOM

Well said CarolinAlaska!

J.


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## QueenGothel

I decided to let her come home, her belly is slightly distended. She has a follow up appointment on Feb 5th so we will just keep it and if I think she needs to see her doctor again at least I will be talking with the one person I know wants to make her 100% better.  This new batch of residents are making me nervous too so best to just hit the reset button.  If I am wrong I will kick myself in my own ars.  Worse case is she goes back on Nutren Jr for a few days, or the ER. Ugh I am hoping neither.  

I know they want her to get better, this being the only reason I kept her there and did not transfer, that and her surgeon and Rowan are a very good fit.


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## Sascot

Really hope she keeps well so you don't have to go back in.  Must be nice getting home!


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## happy

Yay for home!!


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## KazT17

Hopefully you will feel better about it all when you have had some time back at home, and regained some perspective. Hope Rowan is well, and things continue to improve xxx


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## kimmidwife

Keeping my fingers triple crossed for Rowan. Sending hugs and prayers!


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## QueenGothel

Nice to have her home, thank everyone.


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## Devynnsmom

Yay!!


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## Catherine

Glad you made it home.


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## CarolinAlaska

:biggrin: :dance: :thumright: :mario2: :yoshijumpjoy: :emot-dance: :highfive: :cheers:
I'm praying she does great and that things start working right!


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## kimmidwife

Yay!!!! Wishing you guys a smooth recovery and only good things!


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## Mom2fighter

I am so happy for you & Rowan to get out! I am hoping & praying that she will only feel better from now on. :ysmile:


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## Farmwife

I'm sure it's great to have your baby home! ENJOY!


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## Jmrogers4

Yay! Welcome home.


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## QueenGothel

She must've had multiple little obstructions for a while.  She is pooping normal without the use of Loperimide now. Thanks everyone for all the nice uplifting support. I can go to a dark place of fear and worry sometimes and every bit of encouragement helps. 

For the first time I actually feel a relief from the survival mode I have been in.  I hope it continues.


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## KazT17

Fantastic news, delighted she is doing so well xxx


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## CarolinAlaska

QueenGothel said:


> She must've had multiple little obstructions for a while.  She is pooping normal without the use of Loperimide now. Thanks everyone for all the nice uplifting support. I can go to a dark place of fear and worry sometimes and every bit of encouragement helps.
> 
> For the first time I actually feel a relief from the survival mode I have been in.  I hope it continues.


I'm so glad she is home doing well.  That is great news!


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## my little penguin

Glad you're all under one roof.


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## kimmidwife

So happy to hear she is doing well. Go get a little rest yourself! Sending her co tinted healing thoughts and prayers!


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## AZMOM

Deep breaths, momma, you both have been through the wringer!!!

Hugs,

J.


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## KazT17

How is your little one? X


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## QueenGothel

She is home, happy and being her old self.  I remain cautiously optimistic.


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## Devynnsmom

I was just coming in to post and ask how she's doing. I'm glad she's doing well


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## Johnnysmom

I am sure it will take awhile for all that worry to go away, but happy to hear Rowan is doing well and I am sure you will be feeling back to normal soon too.  (((((Hugs))))))


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