Ant's Update (surgery)

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AntsMommy

AntsMommy

Joined
Sep 8, 2010
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I met with the surgeon to discuss the colonoscopy, his stricture, and surgery. Since Anthony has only worsened, he wants to do a resection immediately after the holiday. He will remove the diseased portion as well as his appendix (and I believe the valve that is located there, protocol for terminal ileum surgery?).

He will spend 5-7 days in the hospital, 1-2 weeks recovering at home before he can return to school, 3 months of no gym. (he likes that part) The doctor wants us to come in the night before for prep. He is looking to schedule it Monday or Tuesday.

Tomorrow, we have a consultation with Mt. Sinai. I am excited about this, but then I think what if they say the exact opposite and I am stuck with a child in pain, a surgery scheduled for next week, and an alternate treatment method from Mt. Sinai? Is it crazy to say that I hope that Mt. Sinai is in agreement with what his other current doctors are proposing?

Not that I WANT surgery … on the contrary, I wish it would have just went away with medication, but at this point, I don’t think I can stand seeing him in any more pain. I understand this is not curative, but if he can just have a break. His life is anything but normal these days. Normal for him is lying on the couch in pain, watching Game Show Network. (Ugh!) He will eventually need to try remicade or 6MP, but right now the stricture is too far gone for those to be helpful. Even he is at the point that he wants to have surgery to just have some reprieve from the pain he is in each day.

So, that is where we are currently at. Tomorrow is our big day at Mt. Sinai, I will let you all know how it goes!
 
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Hey Ants Mommy - I think that in your gut (pardon the pun), you'll know. Either you'll know you don't want to proceed with surgery or you'll know you are on the right track.

Offering up lots of prayers for discernment and peace of mind (and of course a good outcome either way for Ant) in the meantime.

Keep us posted.

((Big Hug))

Julie (Claire's Mom)
 
I've just had the same surgery 4 weeks ago (1ft of diseased small bowel, ileo-cecal valve and a little of the large bowel removed) after great debate with the dr's, they were all for it since the summer and I was the reluctant one. Now that i've had it itseems to be the best decision as i'm already off all meds and pretty much returned to normal. I know everyone is affected differently but I really hope your son gets good relief after he recovers from the surgery. The only thing I would say that it might take longer than 2 weeks before he returns to school i'm only now starting to feel normal now and actually found the 2-3 weeks post surgery the hardest.
 
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Hey Kelly,

I don't think you're crazy at all for hoping there is consensus with this and if the stricture is too far gone for medication to be of use then I don't see how there could be an alternative to surgery.

Roo was in hospital for 6 days all up when she had her surgery. Normally you have your bowels open day 4-5 post op and you are then discharged the following day or two. Roo had two weeks at home and then returned to school, so 3 weeks in all.

Roo has been in remission since her surgery 4 & 1/2 years ago and had a visit with her GI yesterday and all continues to go well!

Good luck with the appointment and keep us posted!

Dusty. :)
 
Hey there sorry Ive been away for a few days but congrats on making some headway and I really hope Mt. Sinai goes well for you guys! I wish you guys good luck with the visit and as it appears surgery and a speedy recovery! And hooray for no gym :p
 
Kelly, you're doing all you possibly could be expected to do and then some. If something promises to give Ant some relief, of course you'd rather that be validated by the second opinion. Good luck tomorrow!!
 
I totally agree with a second opinion. What if they can offer something better? Good luck with everything and wishing Ant some relief.

Rachel
(mother of Lucas CD Dec.2010)
 
Thank you all for the well wishes!

Where to start?

I will try to make this brief - I am not very good at that. ;)

I met with the director of the center (yay!) who did not necessarily agree with the surgery. He says that it is very possible that he will need surgery, but it is too soon to say and he wished that Anthony had been started on 6MP sooner (like, 3 mos ago, sigh).

Their treatment plan consists of:

6MP (don't have the dosage right now, dropped it off at pharmacy, but it is half tablet to start)
40 mg. Pred (double what he's taking now, hopefully to help ease his symptoms until the 6MP helps)
Flagyl

I also got to meet with the Social Worker, and next time we will see the nutritionist. Everyone there was very nice, and very thorough. I felt like I got more information from them in one afternoon than I received the last three months from his other Ped. GI.

They left it as my decision to change doctors to take Anthony there instead, and try their treatment plan, OR they offered to call his Ped GI and suggest the treatments, OR I could proceed with surgery. If I stay with them, they'd like to see the films and will probably do another upper gi series/small bowel follow through.

So - I filled the prescriptions and we are starting today! My thinking is that even if this doesn't help the stricture and he needs surgery, I still will get the best surgeon by going to Mt. Sinai hospital. The traveling is a couple hours, but they will work with me on the phone as much as possible, and once he is on a treatment plan that he is in remission, we only have to go once every 3 months.

Right now though ... he feels terrible. I feel bad that there is no instant relief for him, but something tells me that Mt. Sinai is the way to go.

Thank you all! I will be back later with more details ... trying to catch up at work!
 
Hi Kelly,

I have to agree with whats going on. It seems to me surgery should be a last resort. I hope this works for him, and works well.

I have had several strictures in the past that cleared up (for the most part) once the inflammation was under control.

Good Luck to you.
 
Kelly - That all sounds great! (Well, as great as a doctor's visit can be anyway :)) And through your writing, it seems like you are more comfortable with this plan, so that's the way to go!

Thinking of you,

Julie (Claire's Mom)
 
That is great news! It gives me a glimmer of hope that we may be able to avoid surgery. I will now definitely go for a second opinion BEFORE his surgery. ´Good luck and keep us posted.
Rachel
Mom of Lucas
CD dec 2010
 
Thank you everyone!

I feel that dealing with the center, we will receive better care as they are extremely knowledgeable and thorough. Yay!

And - Anthony went to school today! He missed Mon - Wed this week, and three days last week. He was hobbling around due to his pain. Last night he was sitting up and playing video games (which is an improvement from him just laying down sleeping) and he was able to walk around the house with no problem. :)

Merry Christmas everyone!!!!!!!
 
Mt Sinai

Hi Kelly,
Who did you end up seeing at Mt Sinai? We had seen Dr. Benkove and he was great. I wish we lived in NY so we could have kept seeing him. ANyway my daughter just had a very similar surgery. Her stomach pain is better but she is constantly nauseas. I am not sure if that is from the meds she is on. Prednisone and flagyl or something else?
 
Sounds good Kelly!! I can't believe they're not out for winter break this week. All schools are out around here.
 
Hi Kim,

Yes, we did see Dr. Benkov. He won't be our primary doctor, but will follow Anthony's case, and I thought everyone there was fantastic! I think the flagyl can cause nausea. I'd hate to suggest even more meds, but if it doesn't ease up maybe they can prescribe something to ease that also?

Mark - break starts tomorrow here! :)

Thank you Dusty!
 
Kelly,
Did the doctors at Mt Sinai talk about Remicade at all? Our GI doc put our son on that 1 1/2 weeks ago. My son has lots of inflammation, but hasn't had any stricture. The Remicade has helped him feel better and his pain from cramping has diminished in a short week. We didn't get a second opinion...we live in Kansas and there aren't many choices for us. I will always wonder if our doctor jumped to a fix that was easy for her. I really commend you for going the extra mile and getting another opinion. Surgery is permanent so its good they are exhausting all options first. Your son is young, but he'll thank you for staying strong and waiting to see if the meds work for him,
even tho it means watching him in pain. I'll be praying for you and your son. Merry Christmas!
 
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Hi Brian's mom!

Remicade is a possibility, but they wanted to try 6MP first. I believe they usually start with 6MP there for some reason, and remicade is the next option. I am glad that Brian is already feeling better! I hope you guys had a wonderful holiday!

******************** So, another Update ********************

We spent Christmas Eve day in the hospital. :-( Around 10 am, Anthony had a fever and chills. His fever was 104. Between 10 and 11, it fluctuated from 102.9-104.4. I called the pediatrician's office who happened to be closing for the day, but had us come in anyway immediately (all in our PJs) to have him checked out.

Flu swab was negative, his fever was 98.6 by the time we got to the office. Other than fever, he was feeling great. They sent us for CBC and blood cultures and sent us home. One hour later, it is ped saying go to the hospital, he is being admitted because he had a high white blood cell count. His white blood count was 37,000. (normal is less than 17k nurse said?)

So, thank goodness one of my good friends was visiting at the time and she finished making cookies with the twins for me and whisked them off to another friend to watch while Ant and I went in. They did chest and abdominal x-rays, more blood tests, etc. He was feeling good, no fever. They explained about the risk of infection, and I went over all the new meds he was on, gave the info on his new treatment from Mt. Sinai, etc. I asked if anyone would be contacting them to communicate as I felt they should be kept in the loop, and nurse wasn't sure.

Well, by 5 pm Christmas Eve I still hadn't spoken to anyone and was told that the doctor on call from our ped's office wasn't coming in but would call me to talk, and that Ant probably would be on the IV antibiotics until Sunday at least until they figure out what is going on. Still, no one had contacted Mt. Sinai, so I decided to do it myself.

To make a long story short - the pediatrician and O/C dr at Mt. Sinai had differing opinions. Mt. Sinai wanted him transferred if it was anything serious, but after two doctors there consulting they said that there was no reason for Anthony to be in the hospital. He was already on antibiotics at home, he was feeling better than he had in days, he was given extra IV antibiotics, he was eating, drinking, using the bathroom, etc. They said that because he is on a significant dose of prednisone, and considering his inflammation, they weren't alarmed with the WBCs and wouldn't have admitted him and he would be monitored at home. Pediatrician was not happy - she had to come out to hospital on Christmas Eve, do a quick once over and release us. We made it home by 7:30 pm.

We have to follow up with MTS Dr on the phone tomorrow and will prob do another CBC, but we have two sets of blood cultures we are waiting for results on. I just think it was ridiculous that my Ped's office couldn't consult with them sooner. He could have some underlying infection and I know it is better to be safe than sorry, but it was like they were clueless without speaking to MTS.

I will probably post another post about the WBC and see what other's experiences are, but this is our latest update. The good news is we have been home, no fevers, and Anthony is feeling GREAT - and we had a really nice Christmas. :)
 
Well Kelly, I HATE that you had to have such an adventure but I'm glad it ends with him coming home. Yes, they totally should have called his specialist. Especially with the new meds.........good grief! You are already learning the importance of being your child's advocate and clearly you are good at it!!

Blessings to you both - so glad he is at home!!!

Claire's Mom
 
Well, today Ant's fever is up again, 100.6, but not like before. He is in mild pain, and threw up this morning. For now, we are watching. He has more bloodwork tomorrow. Even sick, this is an improvement from a few weeks ago ... but of course I worry that he is going to go downhill from here.

He is home today and this is his 10th absence. I have a call into the guidance counselor at school because I really don't want this to adversely affect his grades and we need some help.

Just hanging in there.
 
Kelly - I hate that for you all and am sorry :-( not that being sorry does a darn thing but just know that we all "get it". Did you ever get a chance to talk to them about a 504 for him?? This might be your time to mention it when you talk to the counselor.

Thinking of you all - keep us posted.

Julie (Claire's Mom)
 
Thank you Julie!!!!

Yes, we are discussing the 504 today. I received a letter in the mail saying that if he misses 25% of the school year he automatically fails, and after 17 absences he wouldn't be eligible for summer school. I am trying not to panic - I am assuming that this isn't the case when it is a documented chronic condition.

Thank you again for your help with the 504!
 
OKay you are good and already all over it. I got one of "those" letters once and flipped a lid too. But you should be fine. Love your heart - it's a lot! Hang in there. :p

Julie
 
I am having this exact same issue right now. I am trying to work with the guidance office but am a little frustrated right now. I will have to call them again tomorrow and ask them exactly what they require to prove that I am not allowing him to be truant and he is not well right now. Should I bring them pictures from his colonoscopy? I wonder what they would do? lol. Sorry, but this is all just really getting to me and I would like to not have to deal with forms and phone calls from the school. I'm glad you mentioned school's because I was wondering what everyone else is doing about this issue.
Rachel
mom of Lucas CD dec.2010
abcess dec.2010/waiting surgery
 
As far as I know we don't have anything like a 504 here. In my daughters case I organised a meeting with the Principal, Deputy Principal, her teachers and any other appropriate support staff. I conducted the meeting and started by explaining what IBD is and then moved onto Roo's history, the impact CD has on her life, any other medical issues she has, the medications she is on and the side effects, I then asked if there were any questions. I finished by the points I wanted discussed and what I expected from the school.

I gave each person at the meeting a copy of the report I had prepared and some spares for the staff room. I also provided the school with a letter from the doctor outlining her diagnosis and issues plus a copy for the school Psychologist.

This worked extremely well in our case but I don't know how it would translate into your school system. Now that Matt has also been diagnosed I know I will not have to repeat the process as the school was more than accommodating with Roo and they have already contacted me about Matt and asked if there is anything they can do to help.

I still have a copy of my report if you would like it as an idea of what I covered. Just let me know and I will send it to you in a PM.

Dusty. :)
 
I spoke with one of EJ's former teachers who is also a close family friend about 504's. She said it should definitely be used only as a last resort because it will be part of his permanent record. It essentially classifies them as Special Needs which may or may not be the case. I'd try it Dusty's way first and only resort to 504 as a last measure.
 
Mark - You have WAY more experience with all this than I do. But, in this case, I guess I would have to respectfully disagree with the child being "marked". Having a 504 doesn't change your classes or classify you with some sort of learning disability. Those issues are better addressed with an IEP (which Claire doesn't have).

For me, I finally had to realize that our kids' situations as different. Different doesn't mean "bad" or "less than" in my eyes but different does mean different. And that means the standard rules and regs don't always fit their situations - such as the case of absences, etc. In these instances the 504 protects the child's right to have the same education despite the "difference".

We were strongly encouraged by a friend who was teacher turned school psychologist to do the 504 and our experience has been great. Schools & teachers in two states have been nothing but supportive and want to be sure that they do all they can to support Claire's education.

All that said, I respect your feelings on the matter Mark. And like so many things with advocating for our kids until they can advocate for themselves, what works for one family may not work for another.

OKay - off my soapbox :lol: I'm thankful to have you all out to share my thoughts with.

Julie (Claire's Mom)
 
Dusty, I would love a copy of that report. Spoke with the school again today and they are telling me its to cover their ass. That if the ministry of education comes in they need some documentation for his absences. I told them I woould like to come in and explain what Crohn's disease is. I find alot of people really have no clue what this disease entails and what it means for our kids. I find the school board tends to be black and white with no shades of gray. Unfortunately, IBD kids fall into that gray area. They are not special needs but do require some exceptions to the rules. I will advocate for my child, because if I don't, who will?
Rachel
mom of Lucas
CD dec/10
 
Julie, I don't know anything about 504's! Fortunately EJ has missed very little school because of crohns. I've never discussed 504s at all until the teacher friend was at our house for New Year's eve. She didn't say it would mark the child in a negative way, only that it would remain in their permanent record. I don't know what harm that would do, if any. I only asked what she knew about them and was told basically that ^^^^. She didn't claim to have much experience with them herself so she could have been completely off base. I'm sure you looked into it in depth before you filed one so I will humbly defer to your knowledge on the subject....hey, about that Wiki article....haha:)

BTW, if EJ's attendance should become a problem in the future and a 504 was the only course to keep him on track, I wouldn't hesitate. He's far too smart to be held back because of absences. If his absences were affecting his overall performance maybe but not absences alone.
 
Mark - I knew you'd bring that Wiki into this. LOL. I should do it since I so clearly have opinions about it. Ha ha.

Julie (Claire's Mom)

PS I appreciate all you do to make this forum an open, caring place for parents.
 
hi all, been away too long. If it helps at all, we had the same kind of meeting that DustyKat did with teacher, counselor, principal and secretaries. It really helped. As a matter of fact I used Dusty's as a skeleton, thanks! We are now in the midst of setting up a 504 for Marilena, which both her school counselor and the one I work with at a high school suggested. From what I was told, its an IEP that determines them as special needs, not a 504, which I believe is an action plan for if something goes wrong. The more info you can get to the school the better and hopefully they won't be obtuse and work with you. Marilena's teacher has offered time and again to come to our house and work with her for a couple of hours if she gets too behind in her work... this even without the 504. I feel pretty lucky. Nonetheless we are going ahead with the 504 which also has to be rewritten each new school year so that it stays relevant. This will not only protect your son from truancy issues but also entitle him to services like a free tutor if he falls behind... I believe, someone can correct me if I'm wrong:)
 
I talked to one of EJ's former teachers today. This teacher did claim to know about 504's, and she told me exactly what Jamie said there^^^!! So I was wrong the first time...Imagine that!! Hahahaha, there's a first time for everything....and 2nd and 3rd and........
 
Do you 'home school' during the times your children can't go to school? Brian has been out all last week, he had strep throat over Christmas Break and the antibiotic mixed with 2nd Remicade infusion sent his bowel into a quick downward spiral. He ended up with the beginning of an abcess in his rectum, (we caught it early). He's on Flaygl/cipro now and he's doing much much better. I'm not ready to send him to school, (the abcess needs to be gone first and this flare on the mend), also I'm scared to send him into a classroom of infections!! I'm desperate for the Remicade to get working and get him into remission...he kept getting sick everytime he went back to school even for a day or two.(Bad stuff too; acute gastrointestinal flu, strep). The azathioprine is finally out of his system!!!! That drug really took his white blood cell count down. Blood drawn a few days ago looks good and seems like Remicade doesn't do that to him. He's so social and gets bored so easily...home schooling him is going to be an adventure for us both!
 
When Marilena has been out of school, we simply do her homework as well as go to the online sites that practice 4th grade math, etc. But I can't do all the other stuff they cover, b/c I don't always know what is going to be covered. If Brian has or gets a 504 on his records, then he qualifies for the school to pay for a tutor to come work with him at home. Just a thought.
 
Mami said:
When Marilena has been out of school, we simply do her homework as well as go to the online sites that practice 4th grade math, etc. But I can't do all the other stuff they cover, b/c I don't always know what is going to be covered. If Brian has or gets a 504 on his records, then he qualifies for the school to pay for a tutor to come work with him at home. Just a thought.
Click to expand...

Where do I get info on a 504? I've never heard of that. Thanks
 
Here's a place to get you started. But your son's 504 DOES NOT have to be as extensive as the template they offer. Just focus on what he needs during flares to get you started. I'm happy to share our experience with doing Claire's if it will help.

http://www.ccfa.org/kidsteens/?LMI=8

Julie (Claire's Mom)
 
Julie, could you tell me more about your exp with Claire's 504? I asked the school counselor and she told me she was looking for her paperwork to get Marilena started. That was a week ago and haven't heard from her. She told me to make sure that I was ready with what I wanted Marilena to have. I've looked at the ccfa doc before and it seems overwhelming.
Thanks!
Jamie
 
Sure - If you want to email me at my office. It's [email protected] and I can reply to you directly or if you would rather me post it here, I can do that too. Just let me know. I'd hate for all the other members to be yawning. :ytongue: Whatever works best for you, I am happy to help.
 
About the schooling thing. I live in Ontario, and of course my son had many absences. I also received a really crappy letter from the school board about truancy and my responsibilities as a parent. I was soooo mad. About a month later he was hospitalized for almost three weeks, at that point I contacted the school board to see if there was any provisions for at home 'tutoring' that they could provide. And they could!! So when my son came home, with a hgb of 86 , very tired and short of breath, they had a teacher come to my house 3x a week to keep him up on schoolwork. I think that's the only way he graduated from public school. Not sure if your school board covers at home tutoring for chronic illness, but worth looking into.
 
Hi everyone

Typing on my phone so please excuse typos. Ant is in the hospital again. This time, abdominal pain is moderate to severe and constant, but he also has shapr pain in his right testicle which is new. Ultrasound shows no torsion and looks ok. Awaiting ct scan now, then discuss with mt sinai to see if we are transferring. Drs here think he needs a surgical consult. Also wtg for lab results (liver function etc. Will update with results later.
 
Kelly - Glad you have your phone and glad you let us know. Praying for Ant & you. Keep us posted.......love your hearts.

Julie (Claire's Mom)
 
Kelly - Best I can tell is that it is an infection of the connective tissue and sometimes treated with IV antibiotics. I'm still reading but didn't want you to be waiting long for someone to respond. I'm sure it depends on where the infection is as to what they will do (probably the reason for the surgeon). Are they telling you where it is? Is that the source of his testicular pain?

Julie
 
Still reading but can't find anything specific other than diffuse inflammation with infection/pus. Poor baby (yes I know he isn't a baby but he's your baby). Keep us posted........

Julie
 
Ty so much Julie! Its near his stricture. The u/s on testicle said all was ok so they think its referred (?) Pain, I guess like radiating there. @ the very least they would like to admit for antibiotics. Fingers crossed that its an easy fix and we can do antibiotics @ home hospital rather than transferring. Will update soon as I know anything. TY!
 
Kelly, is it an abcess? Sending prayers and healing thoughts to Ant. Hoping it all gets figured out and he gets relief. p.s yes referred pain is similar to , i guess, an echo? radiating down..
Rachel
mom of Lucas CD
dec.2010
 
Hi Kelly,

Have also answered your other post re: phlegmon. An abscess is a defined pocket of pus whereas a phlegmon is a diffuse (no boundaries) inflammation of tissue. My take on it would be he must have inflammation in the ileum, I think I read it's in his ileum??, that is leaking outside the bowel into the surrounding tissue. Rather than the pus collecting in one spot it is spreading over a wider area. This makes it difficult to treat with a drain and that is why they would have suggested a surgical consult. If it is severe they need to physically go in and clean it out.

Matt also had pain that extended down into his right groin and upper thigh and it was caused by inflammation of the overlying muscle, perhaps that is what is causing Ant's pain there as well.

I so hope that this is easily treated and you find yourselves home very soon. Sending loads of love and hugs your way............................

:hug::hug::hug::hug::hug::hug::hug::hug:

Dusty.
 
Thank you so much all. We just got into mt sinai and are wtg to hear what GIs think and radiologist here will read his ct scan. They have said he can eat, so I think that's positive. I will update soon. Thanks to you all! Xoxo
 
Kelly - Glad they are letting him eat and I'm sure you are glad to have him there. How is he feeling? Have they started any meds or anything?

You all are in our prayers.

Julie
 
Thanks julie! He is taking cipro via IV so far and that's all I know for now. He is 'tender' now, not in pain like before. He didhave some morphine around noon but I'm sure that's worn off by now. He is anxiously awaiting food which is good. :) will keep you updated!
 
Hi everyone. Ant is still asleep and I don't hane to entertain him right now :) so I'm checking in.

The IBD team here has decided to continue the antibiotics for 24 to 48 hours and re-evaluate. They'd lime to see his CRP decrease (its 52 right now). Then, they will ultrasound the area to see how its doing. So, we are just sorta waiting and hoping these medications are helping at this point.

I will update you when something changes!

Thank you all for your support through this. You've been lifesavers!
 
Hi everyone I hope you had good holidays. What is a 504? My daughter missed almost 2 months of school this year due to her crohn's and surgery but the school is working with us and we are looking to get extra help after school from the school district. They said there is something called other health impaired and they can put her in that category if the doctor fills out paperwork. Then she will qualify for after school help.
 
Well, his CRP went up today to 62 rather than lower. He feels good, so I'm not sure what that means. We will see what GI docs think tomorrow.

Kimmi, there are a couple of moms here with great information on the 504s to help you. The link to the ccfa is a template to start with. Good luck!
 
Hey Kelly,

I hope Ant continues to improve and the IV drugs do the trick. Sending loads of luck with the ultrasound .......keeping my fingers and toes crossed for you both!

Thinking of you, :hug:
Dusty
 
Thank you Dusty!

So we are continuing the iv antibiotics and ultrasound is Tuesday morning. Ant has a little pain toda, but CRP is down to 35. Its just a waiting game @ this point. Thank you for all your thoughts and prayers. I will continue to update you.

In the meantime, I need to figure out what arrangements to make for my 7 yo twins.
 
Sounds like things are on the right track, Kelly. We'll be thinking of you guys and look forward to hearing how he's doing.

Julie
 
Thank you Julie.

So Ant was awake last night in pain. He just woke up and has minor pain. This is the fiirst time since we were admitted that he's having new pain. :( We still won't know anything until tomorrow, no tests scheduled today.

I don't know what I am going to do about work and my other children. Trying to remain positive, we always figure something out.
 
Well shoot (about the pain). Upside is he's in the right place.....like you'd rather it happen now than the day you go home and be wondering whether or not to go back. You know what I mean?

Yes, you will figure it out. But you be sure to take care of Kelly. (I am so good at dishing out that advice and terrible at taking it when Claire is in the hospital.)

Lots of prayers,

Julie
 
Thank you so much Amirah. I just posted on Leya's thread. I'm so happy to see she is out of the ICU!

Julie, I keep telling myself exactly that ... he is in the right place.

Update: they have taken him back off foods, back on IV fluids till this new pain gets sorted out. Running more labs. Definitely not going home tomorrow.
 
Lucas was feeling really bad his last couple days in hospital and he did have pain when the abcess flattened out. I made them do another ultrasound because of the new pain, now that i think about it. Hoping this is what it turns out to be. With Lucas it started around day 5.
Good luck and stay strong!
Rachel
 
I'm so sorry to hear this Kelly. Seems like there's a few of us hanging out in hospitals at the moment! :eek:

I hope it is nothing serious and he bounces back quickly, please keep us posted.

Lots of love and hugs, :hug:
Dusty
 
Yep, Dex, another reason we like you - we ARE awesome. :)

Kelly - What's the latest? Let us know when you can. I was thinking about you all last night.

Julie
 
Thanks so much Mark! Every parent here is quite awesome. ;-)

Well, today we were told that if the ultrasound looks good we could probably go home this weekend. We are meeting with surgeons *just in case* so they are familiar with us, even if it is something possible in the future.

Unfortunately, our ultrasound today didn't happen so we are supposed to be brought in first thing in the morning.

Ants CRP was back up to 65 again, but he feels better and docs are happy. He was allowed to eat again tonight for dinner so he was happy.

That's all for now guys ... sending hugs out to all the other moms and kids in the hospital tonight. ((((Hugs)))) (and those @ home too of course!)
 
Good afternoon moms and dad, lol

Anthony had his ultrasound this morning. Still waiting for results. They are going to compare it to his last CT scan. During the ultrasound, they did see the phlegmon and the stricture, but she said she didn't see an absess (I feel like I am spelling that wrong) in need of draining so that is positive. Praying and hoping they see some improvement.

Thing is, he still had pain (and of course, a lot of pain when they were pushing during u/s) today. I hope this is not a bad sign, but I don't know.

No labs today. They are giving him a break. Oh, and he can eat again, so he is happy about that.


Will update you guys later.
 
Hey Kelly,

Thanks for the update. Mmmmmm hate to say it but I don't like the sound of the pain but maybe my judgement is clouded 'cause of Matt. I sure hope you get positive news and he is well on the road to recovery! and YAY to the eating, doesn't it make the world of difference when they can eat.

Sorry, can't resist...............abscess. ;)

Good luck and keep us posted! :)
Dusty
 
I'm with Dusty on not liking the abdominal pain (days of yore with Claire) but hopefully, it is resolving and won't need any survical intervention.

I was just thinking of you all so thanks for the update!! Keep us posted.

We'll keep on praying for you all. :rosette1:
 
Haha, thanks for the spelling lesson Dusty! I knew that looked wrong!

So, you guys may be right. We still don't have a final decision but the way it was explained to me is that it appears if the area surrounding the stricture does not have the normal amount of blood around it (?) and is probably not the inflammation type stricture that can be cured with meds, but more likely the scar tissue type that needs surgery.

To be honest - they used medical terms that I have already forgotten. But they confirmed that there is no abscess, and the area around it (phlegmon) looks as if it has 'cooled off' with the antibiotics, which they would have liked to happen before surgery anyway.

They all discuss tomorrow and decide how we are proceeding. At this point, we just want a plan, you know? I don't have many days left off of work and at some point, I am going to have to travel back home again and go back into the office at least a few times next week, plus I don't have care lined up for the little ones while I am away. Okay, I am getting ahead of myself again.

So, we should know something tomorrow.

Deep breaths.
 
Okay ... 2 GI docs say now surgery, Surgeon says he is not sure it is time for surgery yet.

Frustrated. Tired. Headache. Really crappy mood today, want to shower in my own shower, sleep in my own bed, tuck my kiddos in at night. Including Anthony - in his own bed. Small rant.

Drs still discussing and will let me know what they decide.
 
Hi kelly, i know how that feeling feels , ive experienced it one to many times, things are hard when you got a child in hospital, and you have other children at home.... oh i miss mine so much, cant wait to sleep in ma own bed it will be heaven.
im sure things will work out hun... fingers crossed you will be home soon.

love amirah
 
Kelly - I'm glad Tinkerbell made you smile. Ha ha.

Okay, you have had a big day. Lock those GI guys up with the surgeon and get some consensus! Right????

About your leave, have you applied for FMLA? If your company is large enough, they should have to allow Family Medical Leave and you certainly should qualify for intermittment leave so your position can be protected. Let me know if I can do any legwork for you.

Wish I could help! I remember being alone at Phoenix Children's with Claire, Chris was traveling, my son was with a neighbor and I just so wanted to go home and sleep in a bed, pet my dog and take a shower without flip flops (there's a story there for later - lol).

Let us know if there is any little thing that can be done for you besides wait and of course, pray.

Big hug - :ghug:

Julie
 
Thank you Amirah. I really admire you, I don't know how you have done this all these months. I guess it is like they say ... when you find yourself in the situation, you just find the strength and you deal with it. I really pray you guys get home sometime soon!

Julie ... My company is large enough for FMLA but this is a new job for me - I left my last company of almost 11 years for this one seven months ago! (Actually, I am the HR person who handles the FMLA at my organization and administers/tracks the leave - how is that for ironic!?) So, I am not eligible until June. On top of that, being the newest person there (administration is really hard to get into there) I feel like such a ... slacker. You know? I haven't been there a year and since September I have had all these appointments, three hospitalizations, etc. In fact, I have missed more work since September than I had at my entire career with my last company! So, I feel really awful about it. So far they have been very understanding and I am not going anywhere, I just don't like having other people do my work (I am sort of a control freak) and I don't want people to be of the opinion that I am the type of person to take off for just anything.

IF Anthony doesn't have any procedures scheduled tomorrow, I am going in for a few hours. It is a two hour commute to work, lol, but I have to start going a few hours here and there. The doctor had a talk with us today ... being that there are many children here long term, a lot of them have parents who have to leave at some point. They have a great children's program (a teacher on staff, the kid zone, live TV shows kids participate in, etc.) so he wouldn't be bored. I just feel awful leaving him, even for a few hours. Yet - here I sit doing nothing while he sleeps, and that isn't helping anything either.

I am afraid of the flip flop story! :-D
 
Okay, another minor (or major) vent here. I feel like I am on the verge of a breakdown. I have been waiting three days for this "meeting" to occur so they can decide how to proceed. I have been sitting here for 10 hours waiting for them to return with some news on what procedure or treatment they have decided on. They are well aware that I am a single mother with two other children 2 hours away, and I need to plan for what we are doing. I was assured that I would know today.

I have heard nothing.

Just asked the nurse and she was like "Didn't you talk to him this morning?"

ARRGHGHGHGHG!!
 
Oh Kelly! Don't you just want to smack them sometimes? I have gone toe to toe with MANY Dr.'s and nurse's and nothing infuriates me more then their superior attitude. I guess they figure that if it doesn't directly affect them, then what's the hurry? I am in the same boat but reversed. The surgeon says surgery and the GI says lets wait. Frustrating, because his white count is back up and I am waiting on an ultrasound to see if his abscess is filling up again. Can't wait for my second opinion! I really hope you get answers soon and get back home. Sending tons of hugs. You are an amazing mom!
Rachel
 
Thanks sooo much Rachel!

About an hour after my meltdown, the doctor did return for an update. I guess I am used to being left in the dark, so to speak. So, they are going to continue to leave him on the IV antibiotics over the weekend and do a repeat CT scan this weekend, and the surgeon will review on Monday to see what they'd like to do.

Rachel - funny about your reverse situation. I think normally, it is that way where surgeons want to cut-cut-cut and the GI docs want to try meds. I have to say, at THIS point, I want the surgeon to decide to do the surgery. Well, I want what is best, but I trust the GI team here and their opinion of surgery. I hope all goes well! When/where is your second opinion?
 
Dexky said:
I think that is usually the other way around!! Why doesn't the surgeon want to operate?
Click to expand...

I know!!!

Well, the surgeon is concerned of a couple things:

1. That the phlegmon is not cleared up entirely and he would operate and there would be puss, etc. which is DOABLE but would be a less than ideal situation.
2. He is not convinced there is no abscess. He wants to see a new CT scan. If there is an abscess, he'd want to drain it first.
3. He wants to be sure we gave the meds all the time we can before resorting to surgery, and since Anthony has only been on 6MP one month this is obviously not the case.

Now, he did say that he does believe that this will result in surgery eventually, but he doesn't think it is necessary immediately.

The surgeon did not review the latest ultrasound before we had this conversation, and the GIs had, so I believe that they believe the stricture is more scar tissue where the surgeon told me he wants to be more certain it is scar tissue and not inflammation that can be fixed via meds before he goes in.

So, that is where we stand. At least another four days until we know more.
 
I am so glad the doctor came back and gave you some answers. We have an appointment at the University Hospital in London, Ontario. My sister works on the pediatric floor(she's a speech pathologist and works with all the GI docs assessing babies)and as soon as we got the diagnosis, she insisted we go see Dr.Howard. She says he is the best. Unfortunately, our appointment isn't till Mar.9. I have contacted his office and am waiting on a cancellation list to see him sooner. Hoping Lucas remains stable until that apppointment. But good news, he's back in SCHOOL!!!! I told him monday if he could go 24 hours without a fever, he could go back. I woke up at 6am wed. and he was standing in the kitchen with a thermometer in his mouth LOL! He hasn't been to school since Dec.5 so he was missing friends and believe it or not, even some teachers. He still has the "tightness", and is in bed by 8pm, but he's taking his life back, and I am so proud of him. It is truly astonishing how quickly kids bounce back. Hell, I haven't even begun to deal with all this. Hoping Ant gets home very soon and bounces back just as quickly. Keep us posted!
Rachel
 
AntsMommy (Kelly),
Which is more important? The SED rate or the CRP? My son's SED has been climbing but his CRP decling. In fact today, he been feeling sooooo much better in the way of cramps and his CRP is down to o.9 (mg/dl) but his SED rate is 71 (mg/dl). He does have these erythema Nodosum on his ankles. (Swollen bumps connected to crohns-they appeared a couple weeks ago when he had start of an abscess...then his SED was 55 and CRP 6.6) You recently mentioned CRP rates in regards to your son.
 
ESR is for chronic illness and CRP is for inflammation, I think. Our last CRP was 241 and ESR was 77. But Lucas has about 75% of his colon involved, as well as his ilieum and small bowel. So far the only areas not affected are his esophagus and stomach and rectum and half his descending colon. I don't know which is more importamt, but I would think the CRP because it is evalated in a more acute situation. Hoping this helps.
Rachel
 
Hi Brian's mom,

Doctors here haven't even mentioned SED/ESR, so unfortunately I don't know the answer to your question. :( I am thinking of Brian and please let us know what you find out. Maybe you can post your question on one of the main boards that gets more traffic - there are sooo many knowledgeable people there, they are bound to have an answer!

Rachel - that is too CUTE about Lucas and the thermometer! I am so happy to hear he went back to school, that is great news! Fingers crossed that you get an appointment sooner than March, but if it has to be March, I hope these weeks fly by with Lucas feeling well!

*******************************************************

Ant's Update:

Yesterday he was feeling well again and he was allowed to eat, but still didn't really have his appetite so he didn't eat much. GI doc said he was happy because his stomach seemed less full and tender (yesterday) so we would stay on plan: CT Scan this weekend, review with surgeon Monday.

Today, Ant was up at 5 am with pain (4-5 on a scale of 0-10). At 6:45 am he vomitted. He is again NPO, but today he was allowed to have some morphine for the first time since we've been here. (They didn't want to mask any symptoms and slow down the bowels so he had been allowed only tylenol as needed). He isn't in constant pain, but the surgeon's associate was just in feeling his stomach and even with the morphine he has pain when pressed. It seems like it is one good day, two bad days, one good day, two bad days, etc. Please let them have some answer on Monday! At least a plan ... he can't live like this.

So, we are just waiting to be squeezed in for a CT scan at this point. He is finally falling asleep again.

It is a lovely 10 degrees here today in NY.
 
Thanks Kelly and Rachel for your quick response. I think I should focus on the normal crp and also he's acting like he feels better and he's hungry all the time.

Kelly, How is anthony's spirit thru all this? Its been hard on my child to make a plan...then always seems to have to defer to plan B. I think that is what crohns is: How well do you cope with Plan B,C...etc. I keep trying to pump my son up and cheer him on but he's getting used to being disappointed. I hate that for our kiddos. Brian will be 11 in a month and has been flaring on and off since his last birthday. He needs a break and he hasn't had to endure what Ant has had to. They're close to the same age. Do you think when they get older their symptoms will be easier for them? Also, have you been told that anytime they catch an illness they could flare? Kids get sick often...and especially our kids. I hope a simple virus won't lead to another year... is that what happens?
 
Which is more important? The SED rate or the CRP?
Click to expand...

Both ESR and CRP are indicators of acute inflammation but ESR is a very old and somewhat unreliable test as there are many outside factors that can affect an accurate reading.

CRP is considered the most reliable and accurate test for acute inflammation in IBD. According to levels obtained it does have the ability to differentiate between viral and bacterial infections and it also gives faster and clearer indications of the patients response to treatment.

It really should be the doctors test of choice when determining the extent of inflammation in IBD via blood test.

HTH, :)
Dusty
 
Well, how do I deal with this now?

I came home to spend the night with the twins tonight as Ant's uncle is staying with him, doing a whole football and video game night. I haven't been home in ten nights, except to pick up the kids and my mom last Friday (briefly).

Tonight I come home to find that Anthony's pet ferret has passed away. I have been crying ever since. (He was our baby) Since Anthony is allergic to cats and dogs, we got Max 5 years ago. He has been such a great friend to him, and just like a dog, had the run of the house ... ran to the backdoor to greet us anytime he heard the garage open ... would stand at the cabinet where his treats were located and beg ... had a way to climb up into my bed and would sleep with me at night. He has been sick for nearly a year with adrenal cancer, a common ferret disease, and has had surgery and several different kinds of medications.

On Friday I noticed he wasn't himself, and am glad I took some time to cuddle with him before we left the house. My mother has been taking care of him ever since we have been away at the hospital, but was not at home when he passed away. I feel terribly guilty, cannot stop crying, and have no idea how the hell I am going to tell Anthony that he has died.

I have been having talks with the kids to prepare them that he would eventually be put to sleep if he started suffering, and just had a conversation with Anthony on Friday where Ant said he would be fine until he (Ant) at least made it back home.

Now what?

The little ones know as they were with me when we found him, so I can't hide this from him until he is home and don't feel right doing that either. I can't say that I am completely shocked ... I expected this sooner or later, but I just can't deal with this right now. How am I supposed to tell Anthony this? I am supposed to be spending this evening with the twins and preparing for the week ahead ... but I've really just had a horrible evening. I gave the little ones the whole "always in our heart" and "playing over the rainbow bridge" speech ... yet I can't seem to accept it myself and I am a wreck.

Anthony was still having some pain this morning, but seems to feel a little better tonight. Prelim CT results (for yesterday, CT #2) show the area is diseased, extremely inflamed and has fluid all around but not in an abscess that can be drained. The surgeon is going to compare the two tomorrow and discuss how to proceed, but it doesn't seem if anything has gotten any better, now 10 days on IV antibiotics.

2011 really sucks so far.
 
Sorry about Max, Kelly. We've had so many pets over the years, it seems like the kids have got used to losing them. This situation is different though. I'm sure you will find the right words!

It sounds as though this CT news may get the surgeon more in line with the GI's. I know the last thing you want is for Ant to have to have surgery, but the first thing you want is for him to get better. Maybe this will get the ball rolling in the right direction.
 
Kelllllllyyyyyyyyyyyyyyyyyyyyyyy - That is me shouting your name and giving you a big ol' hug. Good grief! That is all crappy. I say scrap the over the rainbow speech. Tell them how much you loved Max and you can all be sad and cry together. That breaks my heart for you all......

I was not on much over the weekend. Computer issues at home. So, I'm getting caught up from the office. Sounds like maybe you'll finally have a definite course of action. Like Mark, I know you don't necessarily "want" surgery but if it could lead to Anthony (and the rest of you) getting a since of normalcy back and being healthy, I know you're ready for it.

We'll be thinking of you today and waiting for news.

Julie
 
Thank you Mark and Julie. I am still alternating with disbelief that I have to do this tonight to complete and utter grief over this. I am torturing myself by watching little videos I have of Max on my phone. Part of me wonders if maybe I can just avoid telling Anthony a little longer ... but he isn't a small child anymore, and the other kids know and I just can't lie.

No news just yet. Today the surgeon and GIs are supposed to discuss final second CT results and decide what we are doing. Anthony is feeling okay and ate a bagel and kept it down. GI this morning said the infected area feels a little more full and tender than Friday.

Mark ... you are right, no one wants surgery for their child but at this point I think it will give him the relief he needs and a fresh start with his meds, etc.

Will write more later. I am at the office for a few hours ... trying to catch up a little bit with critical stuff to buy me some more time out of the office.
 
Oh Kelly! How devastating, my heart goes out to you and your kids. Poor little thing. We are HUGE animal lovers here (I even snuck a puppy up to the hospital for the afternoon) and know how much they mean to the whole family. I think you are right about having to tell Ant, but it is so hard to make them hurt more,especially now. You are an awesome mom and will figure out how to break it to him gently, if there is a gentle way. Thinking about you and your family and I will say a prayer for Max. He left his little paw prints on all of your hearts and that will never go away.
Rachel
 
Thanks so much Rachel, that was sweet and made me feel better. :)

Anthony was (is) very upset, but we talked about the happy times we've had with him and that he has been sick for some time, and is no longer suffering. Ok, need to change the subject. No more crying.

So, we have a plan! Trying oral antibiotics tomorrow and the following 24 hours are the deciding facot of what happens next. Too much to type on my phone, will explain more later!
 
Kelly,
You're such a good Mom. I'm so sorry this had to happen now, bad timing for Anthony.
Maybe in the future it'd be fun for him to pick a new baby ferret. (Or would he feel like he's replacing Max?)
I also had a question for you, do you think the flagyl causes any cramps? (I noticed your son is on the same amount as mine). Also, why does the dose seem to be the same no matter the age or weight of the patient?

Keeping you and your whole family in my thoughts :)
 
Awww thank you Brians mom. We aren't thinking of another. We actually have one more, she's younger and we've had her only 3 years, but I can't explain ... she didn't bond with us like max. Anthony took care of Max since he was a baby rattling his cage to get out. Delilah, on the other hand, is quite antisocial (but still a cutie). After Delilah, there will be no more. (Who knows, I say that now). Flagyl - I'm really not sure how the figure the dosing??? Maybe its a standard amount? I agree seems odd.

So this morning, anthony is nauseous, not eating, and has a fever again. So much for our new plan. :( waiting for the drs to see what they say.
 
Not taking him off of the IV antibiotics.

They are going to see if interventional radiology will be able to help drain some of the phlegmon during a scan with an anesthesiologist. Anyone been through this?

If it works, it may help reduce inflammation quicker and he can eventually go home and heal and schedule surgery, or do surgery sooner.

If it doesn't work, surgery may be the only option. They have determined he does need surgery for the stricture anyway, but they'd prefer not to do it with the phlegmon there.
 

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