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‘Rush’ surgery and abx

Tesscorm

Moderator
Staff member
‘Rush’ surgery and abx

Hi,

S was assaulted on Friday while out of the country. 😞. While there, he rcvd stitches on his forehead and told to follow up re his jaw when he returned. His return was scheduled for Sunday morning.

He was in horrible pain and his face was so, so swollen. We went to hospital straight from airport.

He has two breaks in his jaw. They admitted him and started him on in abx (ampicillin). He’s in surgery now. I know it’s not life threatening surgery but so anxious. And it’s a 3-4 hr surgery.

They had said he wud likely be released later today.

I’m wondering if I shud push for one more night of iv abx rather than starting on oral?? Dr said he wud be taking strong abx bcz of bacteria in mouth and remicade.

What do u guys think?
 

Trysha

Moderator
Staff member
How terrible Tesscom...what a thing to happen...I would certainly press for a longer hospital stay in the circumstances.
Is your regular GI available for you to consult?
There should be adequate surveillance with such antibiotic therapy.
Hope there’s plenty of pain medication being given.
Wishing for a speedy recovery and lots of pain relief
Hugs
Trysha
 

my little penguin

Moderator
Staff member
Definitely get his GI to weigh in
And or infectious disease
Since both have much more experience with infection/abx and remicade

Does he have an infection present in his jaw now
Or are they worried he will develop an infection ?
Those are two different scenarios for the docs to consider

Sending healing thoughts
Only did iv abx once for ds (mastoiditis ) to preventbit from spreading to the brain
Two days iv then on strong oral for 21 days I think
He was on humira and mtx at the time
But had to stop both

Check out if and when he can receive remicade again as well


Hugs 🤗
 

Tesscorm

Moderator
Staff member
I believe surgeon wanted abx as prevention. There was no cut involved with the breaks. There was bleeding under his tongue but it was under the skin/membrane. There was the cut on his forehead but it looks good - not swollen at all or red.

We’re in same hospital as his GI. I went to office and spoke w secretary. His usual secretary is on mat leave. 😞. She said that GI wud defer decision re staying the night to current surgeon. She also said she didn’t think (I never like don’t “think”) there wud be no impact on crohns if abx was oral or iv. But, I’m going to send fllw up email tonight do I can be sure GI is apprised. And I’m going to push for one more night. We’ll see if they agree.

And will find out re remi. Luckily he had his last infusion July 28, do we hv a few weeks till his next.

Ugh, just relieved surgery is over! They’re just transferring him back to his room right now...
 

Trysha

Moderator
Staff member
I am appalled that a secretary would give a clinical opinion....there is no way she is qualified to do that.
Her position requires she report concerns to the doctor or consultant for them to take action.
You are quite right to notify the GI directly and I would be mentioning the medical opinion offered by an unqualified secretary.
It used to be that a patient could refuse to be discharged if the condition was at all hazardous.
Glad to hear the surgery is over..now he needs appropriate recovery time and treatment.
You should be able to speak with the surgeon or one of the assisting doctors regarding any concerns.
Hugs
Trysha
 
Tess, so sorry to hear about this--what an awful thing to have happen. I would also push for an overnight stay, I think, if I hadn't been able to contact the GI directly. I hope you hear back from the GI soon, and that your son is feeling better post-surgery.
 

Maya142

Moderator
Staff member
Tess - how awful. I can't believe this!!! Your poor boy.

My daughter just had jaw surgery for her arthritis. She is pretty complex and two biologics but it has been a LONG recovery. Based on all the parents I have talked to (which have all been arthritis parents), jaw surgery is rough.

Some kids who have had surgery to purposefully break their jaw (a jaw reconstruction) have their jaws wired shut for a while. Which means a liquid diet. I just wanted to warn you, just in case.

I hope S's recovery will be MUCH more straightforward and easy. Poor kiddo. What a horrible situation.

I'm guessing he will need pain meds for a bit. Remember those are pretty constipating so you may want a laxative or stool softener on hand. I would definitely push for at least 1 night after surgery, so they can watch him.

My daughter also received IV abx with her surgery. They caused diarrhea but no CDiff (she was tested for it).

Sending LOTS of hugs :ghug:.
 

Tesscorm

Moderator
Staff member
Just got home but they did keep S in for one more night and just sent GI an email.

Yes, poor guy... he went for two days, travelling from south Portugal to Lisbon by bus, waiting in Lisbon all of Saturday and then flying out to Toronto on Sunday... with a broken jaw and only tylenol and ice! :( S said hospital in Portugal did x-rays to rule out a concussion and stitched up his forehead but didn't mention a broken jaw?? Either they missed it or he didn't understand them (he doesn't speak Portuguese). Then again, you'd think they would have wrapped up his jaw somehow?? IDK???

And just awful how it happened! :cry: S and two friends had spent the last night there out with my uncle, he'd taken the boys out to dinner and then to a karaoke bar. From there, my uncle (82 and still going to karaole bars! :lol:) went home and S and friends were also going home to pack. They stopped to pick up some take-out food. S went to bathroom and friends were in line. He came out and some jerk was making really bad racist remarks to one of his friends and the two of them were arguing with the jerk. S said he just said something along the line of 'forget it guys, he's an idiot, not worth it' and the three of them walked away. S thought it was done. But, something made him turn back (luckily he did) and, just as he turned, the jerk kicked him straight on the side of his face. He said he went straight down, hitting his head, because he didn't see it coming at all. (I think it could have been much worse if he'd taken the kick to the back of the head! :( ) He says the rest is pretty much a blur... he remembers a policeman being there, then just being at hospital. So, doesn't really surprise me if he missed or misunderstood any information given to him at hospital.

Wrong place at the wrong time. :(

Now, post surgery, he's been told no real solid food for six weeks. He said he did six weeks of EEN, he can handle this... at least he can have pureed foods. :) First two weeks will be strictest but then we can gradually add very well cooked pasta, mashed potato, etc.

He doesn't have 'wires' (I don't think??), he has what looks like braces on both top and bottom teeth (although both breaks were to bottom jaw bones) and these 'braces' are meant to support teeth and jaws during the healing - they come off after six weeks as well.

I'm meeting with doctors tomorrow morning to get final instructions.

His job is in customer service - talking 8 hours a day, every day! Surgeon said he can go back in a few weeks, but will depending on how he feels and healing.

Just feel so bad for him... this is awful now but was also horrible speaking to him throughout Saturday... he was so upset, shocked and disappointed that someone would act like that, then in so much pain, not knowing what to do to alleviate the pain and just wanting to be home! I was so relieved to get him at airport! Ugh, terrible weekend!
 

Trysha

Moderator
Staff member
Feeling for you both Tesscom ...hope the healing will be swift and not too painful.
It’s good he’s staying in the hospital even if only overnight....it will help recovery.
Hopefully the perpetrators have been caught by police and will have to pay for what they did.
What a world we live in.
Hopefully you will be able to sleep a little tonight..you need it for the strength to cope
with tomorrow......one day at a time from here on in.
 

Maya142

Moderator
Staff member
Poor S!!! I am so sorry Tess. Poor, poor kid. I can't believe someone would attack him. Yikes. I guess it's a good lesson for all our kids - if someone says something horrible or racist, don't even engage. Walk away.

I know what you're talking about by the braces. I have seen other kids recovering from jaw reconstructions with them, but they typically can't open their mouth enough to even eat soft foods, so his might be slightly different.

M has been on soft food for 6 months or so now. Mashed potatoes, eggs, rice, mini-muffins, fish, pasta etc. Eggs and fish have been her major source of protein. If he likes tofu, that would work too. She also has been able to have sandwiches (with ham or turkey) with soft, white bread (whole wheat was too much chewing) dipped in broth so they're soggy. She can even have toast dipped in broth. She is very sick of broth now but it's allowed her to eat more foods, so she still has it.

We have supplemented by formula. Might be worth getting his some Boost or Ensure, just for when he can't chew.

First two weeks were hardest for M. They're also when you'll see the most swelling.

I am amazed he managed to get back to you with only Tylenol and ice - poor S! He must have been in so much pain. I hope they are managing his pain now. How was he feeling after surgery? Did you get to see him?

Things to ask about -
1) What to do for pain management. How to alleviate pain. Is ice and heat allowed? Usually ice is allowed in the beginning and then later you can use heat.

We got this for icing: https://www.amazon.com/dp/B000PGVO6S/ref=twister_B00CKQW6G8?_encoding=UTF8&psc=1

It's called the "Face caddy and you wrap it around and put ice packs in. We actually have two - that's how much M relied on them, before and after surgery.

2) Will he need physical therapy? If so, can they recommend a jaw PT? When should he start PT if it's recommended?
We had to find a specialized physical therapist who focuses on the jaw. A craniofacial and cervical (spine) PT. They focus on only the face/temporomandibular joints (jaw) and neck.
This site has a directory - it includes other countries but of course I have only searched in the US. They are kind of hard to find:
http://www.ptbcct.org/content.aspx?page_id=78&club_id=37001

Check with your GI about using an NSAID for a short amount of time - it should be allowed if his IBD is under control and might save him from being on pain meds too long. If it is allowed, make sure to give it with a meal. A PPI should help if it causes stomach pain. Celebrex is usually the one given - it's easiest on the stomach.

Really hope he feels better tomorrow.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Oh wow, glad it wasn't worse!

Regarding the jaw...I broke my jaw in 2 places when I was a child, and had my jaw wired.....if I remember correctly it was very similar to braces, so that is probably what was done with your son. Soft foods only, NO chewing...I 'lived' on ice cream, jello, pudding etc until the wire came out/off.
 

Tesscorm

Moderator
Staff member
We're both back home. S is doing ok... pain seems to be under control.

So far, hunger has been controlled with Boosts but I've got broth, pudding, ice cream and apple sauce ready to go. I'll have more pureed soups ready by tomorrow. Hopefully, by the time his patience/tolerance for this diet wears off, he'll be eating a bit more variety.

He has a follow-up on Monday with his surgeon/staff, hopefully, will only be a good update.

Maya - thanks for those links. Unfortunately, Amazon doesn't ship that face caddy to Canada. But, I think this must have come up on here before because I remember someone saying the same thing can be accomplished by sewing two pairs of socks together. :) But, for now, it's mostly his left side that is swollen (that's where most of the trauma happened), so we're primarily icing that side.

And, I looked up the physio on the other link. It did show one therapist. I didn't have a chance to ask drs about this today but I'll ask on Monday.

Am waiting to hear back from GI re abx and remi. But, abx are only for 3 days so, hopefully, won't cause any issue (also have probiotic yoghurt for him).

Thanks everyone!! :hug:
 

my little penguin

Moderator
Staff member
https://www.elastogels.com/pages/shipping-information

We use the generic elastogel one for ds jaw
He aslo has jaw pt
Ds loves it
We freeze his

This one
https://www.elastogels.com/collections/hot-cold-therapy/products/elasto-gel-hot-cold-all-purpose-therapy-wraps?variant=7330239250468

We just don’t Velcro it
Ds lays on his side at night and it rests on the pillow and the other side of his jaw just sits there
Plus the neck one

They do ship outside the US ;)

A certified jaw pt can make a huge difference
 

Trysha

Moderator
Staff member
Thanks for the update Tesscom...
It’s good to hear you are both home and doing as well as can be expected.
Hope for quick healing ....and well controlled pain
Hugs
Trysha
 

Tesscorm

Moderator
Staff member
MLP, thanks for that link. I'm going to order one today. I've been having back/hip issues so a large ice/heat pack may work really well for me too! ;)

Do you think pt is a certainty after the six weeks? Or are you suggesting it may only be 'possibly' needed in recovery? Asking because the link Maya provided only listed one jaw pt whose office is about an hour's drive away. If pt is going to be a certainty, then I should start looking/asking now to see if I can find a closer one...
 
Oh man, Tess my heart just stopped my this. 😕
I'm glad y'all are home.
I also had my jaw broken (on purpose) and had it wired shut like that.
They were worried I'd lose weight.
Proved them all wrong 😂 soft serve ice-cream slides easily between the teeth.
Hopefully he heals will
 

Maya142

Moderator
Staff member
Tess, you have to ask the surgeon. M had a very different surgery and she was told after 3 weeks or so, she had to start PT. She can only open her mouth about 18 mm without increased pain, and maybe 25 mm with increased pain. Normal is 40-50 mm. For men, it can be higher than 50 mm.

And she can barely move her jaw laterally - only 2 mm to the right side (she only had surgery on the left side). 9 mm to the left side (right TMJ is fine - more than 8 mm is normal). So she has a lot to work on.

I don't know what your son will need but I would assume he will need some PT. But really you need to ask the surgeon to be sure. I would look around for a jaw PT but you may have to drive. There aren't very many physical therapists that are even comfortable treating jaw issues.

We have found that having a specialized jaw PT is much better for M than seeing just a regular PT. She now sees both a regular Pt for her back and hip and a jaw PT for her jaw and neck. Her surgeon did want us to see a PT who specialized in treat TMJ issues.

Our jaw PT introduced us to the elastogel wraps and I can tell you that my daughter BOTH love them. We have two back wraps and they are wonderful for any sort of back pain. And we have one for the cervical spine which we use for either the jaw or M's neck. My girls don't like freezing them - say they don't get cold enough, so we just heat them. But they are very worth it - for you and S!

How is he doing today?
 

my little penguin

Moderator
Staff member
We told Ds dentist about the pt
And he also insisted that it is someone who specializes in the jaw
He said otherwise it’s way too risky
We got lucky only a few in our entire state (as in 2)
But we’re able to get Ds in
 

Tesscorm

Moderator
Staff member
ok, I'll be sure to ask re pt at Monday's follow-up. If there are so few specialized therapists available, I'd better get apptmts booked asap (even if not for a few weeks).

He's doing well, given the circumstances. He really has a good attitude... I told him I felt so bad that this happened to him and he said 'it's ok, sh-t happens'. :) He definitely makes things easier for those around him! :heart:

Definite improvement in swelling today. Still has jaw pain, had to take a morphine earlier today but, only one dose per day so far. Still has numbness in the one area where surgeon had to 'move' the nerve... but surgeon said this could take weeks/months to go away. And, after we applied the wax to the wires last night, big improvement on the gum pain today. So, we're moving in the right direction. :thumright:

And, Farmwife, ice cream always goes down easy! My daughter bought him a box of high protein Peanut Butter Banana ice cream today! :lol:
 

my little penguin

Moderator
Staff member
So glad he is improving
Wonderful high protein ice cream
Wow !!!
Great idea

Elastogels Ds freezes them as long as it’s two hours or more in the freezer
He uses two at once
They are cold enough for his jaw
Hope he continues to improve
Poorkiddo
 

Maya142

Moderator
Staff member
Honestly, if he is managing on one dose of pain meds a day, I wouldn't worry. Sounds like he is on the mend!! He did just have major surgery, so typically pain meds are needed for at least the first few days.

That is a great idea - high protein milk shakes!! I wish we could do that for M but she can't do that much dairy and won't drink anything else.

We were told they cut a certain nerve during the surgery. Where is S's incision Tess? M's is from her earlobe up past her ear up into her hairline. It's about 4 inches long or so. So if his is in a similar place, it's likely they had to mess with the nerves.

If they cut a nerve, our physical therapist said it will grow back in month or two (possibly longer) but the sensation on that side may never feel quite the same. I don't know if the same is the case if you move the nerve.

S definitely has a wonderful attitude - he deserved to be spoiled by mom!! Did they (the police, not the kids!) get the guy that attacked him?
 

Tesscorm

Moderator
Staff member
MLP, my daughter bought the ice cream at a health food store, but one that caters more towards fitness buffs, etc. I'm not sure if it's something that is sold in all healthfood stores... I'll check the brand when I'm home tonight and post it if it's of interest to anyone.

Maya, he been managing mostly on extra strength tylenol all day but I meant he's been adding only the minimum morphine that he can (ie one pill) once per day.

He had two incisions. One is on the outside, just beneath the jaw bone. This was for a break just in front of his left joint but behind all teeth. Surgeon said he wasn't able to fix from inside mouth because it was too far back. The other incision was to fix a break just off to the right of his chin. The incision is inside his mouth. This is where they had to move the nerve to repair break. Surgeon said they didn't need to cut or damage the nerve but moving it is enough to irritate it. He said it 'should' go back to normal, although it could take weeks/months.

And, really annoyingly, no, they did not catch the guy. Where it happened is a really busy, crowded street. It's the main strip, filled with restaurants, shops, bars, cafes, etc. with lots of little paths off the main strip. At that time of the night, it would've been really crowded. His friends said the the police did look for the guy but he ran off right away and, in the crowd, it would've been easy to get lost. :ymad:
 

Tesscorm

Moderator
Staff member
Ice cream is Cool Whey Sport Protein ice cream. Not the same as Cool Way ice cream. But, I couldn't find a website for them. It's produced in Canada so not sure if it's available in U.S.
 

Trysha

Moderator
Staff member
Too bad they weren’t able to catch that guy....but it will catch up with him sooner or later
Man proposes...God disposes.
It’s good your son is able to get some nourishment so essential for healing.
Hope he heals fast and is soon better Tesscom
This must be very hard on you and the family.
Hugs
Trysha
 

Tesscorm

Moderator
Staff member
Actually, just starting to realize that 'nourishment' may be a bit difficult! He said he's already lost 8 lbs!

He's drinking 3-4 Boost shakes a day plus some soup and yogurt. But, clearly, it's not enough. Until he said how much he'd lost, it hadn't really hit me how few calories he was getting. Duh! :ybatty: I'm going to have to get a bit more creative with the soups!
 

Tesscorm

Moderator
Staff member
Yes, am going to buy the Boost Plus. He's had them before and was fine with the taste/texture, so not a problem there.

Made mashed potatoes w/gravy last night... but, out of habit, I make mine with low fat cream cheese and skim milk... will change that! I guess it's only for six weeks but, still seems wrong/unhealthy to simply add high fat or sugar. But, not sure how else to get the calories in when I can't add anything that requires chewing??

I'm going to try making something like a tenderloin, in slow cooker (so it's really soft), then pureeing it and adding it to soup?? IDK what that texture will be like??
 

Maya142

Moderator
Staff member
You really need to count calories on this "diet" - we didn't realize how hard it would be either. M needed her feeding tube after months of not using it. We put everything into my fitness pal and then figure out how much formula she needs. Since he's drinking the formula, you may need to do a few days to figure out how and when to add more (or you could use Boost Plus or something higher calorie).

Can he chew at all? Because if he can chew a little, you can start introducing more food and rely less on soup. It sounds less-than-appetizing, but now she will dip food in broth - to make it soggy enough to eat. We can do grilled ham and cheese or turkey and cheese. Cut off the crusts and cut it into small pieces (like you'd do for a toddler ;) ). Then dip in broth.

If he'll eat fish, that can be made to be pretty soft. Scrambled eggs or even an omelet (with cheese and nothing else) require minimal chewing.

In terms of pasta - we use orzo or other small pasta that can be swallowed without chewing. You can make pasta sauce so it is more soup-y and he is able to just swallow.

M was put on a "mechanical soft diet" in the hospital - which essentially means minimal chewing. On the diet sheet we were given, they even included chicken with gravy. We didn't try that, because M said it would require too much chewing, but wanted to mention it. Maybe in a couple weeks, S could try it.

Stews also work, if he will eat them.

Milkshakes, ice cream, smoothies, pudding - if he will have any of that, that will give him some calories.

We only had to get to about 1200-1500 calories for my daughter to maintain her weight - I would guess S needs a lot more!!
 

Tesscorm

Moderator
Staff member
Thanks for the link, Maya. That will be helpful!

He's not allowed any chewing for two weeks. After that, for the next four weeks, dr said we can start adding very soft, overcooked pasta, rice, etc. He'd hesitated but said maybe poached fish... he said things that will almost 'melt' when pushed against roof of mouth. S likes fish, so that will help add variety. And dipped bread will work too.

I was thinking to try cream of rice. Your link had a good idea to mix oats with Boost, I can probably do it with the cream of rice.

When S was on EEN, he was on 3000 cal/day! This is going to take some work!

Poor M and you... this must be so tough to manage for a long run!
 

Maya142

Moderator
Staff member
M has been on this kind of diet since April..but we are adding in things like chicken now! He will get there - I promise!

The no-chewing recommendation makes sense considering the break. Poor kiddo. M was in the hospital for 8 days, and for the first few, she really didn't chew at all. Pudding was a favorite ;). And scrambled eggs or mashed potatoes, which she had for pretty much every meal in the beginning.

I was thinking poached fish or maybe even baked fish. I bake it in a cheese sauce for M and she says it really requires no chewing.

Chicken is harder - I'll admit, we haven't a lot of headway there and M is 6 weeks out from surgery. But M is also a complex case and has a pain syndrome (so all pain is amplified, even surgical pain), so hopefully it will be very different for S.

For pasta - this is what I use: https://www.google.com/search?q=acini+di+pepe&oq=acini+&aqs=chrome.1.69i57j0l5.3764j1j4&sourceid=chrome&ie=UTF-8

He will be able to eat that without chewing, if you put in a sauce. Mac and cheese was another hospital favorite for M. And pasta will add some good calories to his diet.

You can also do mashed sweet potatoes for variety. French toast with syrup - if you use thin, white bread, that requires very little chewing (I use challah from a local bakery, sliced very thin).

I do think for the next few weeks, he will have to rely on Boost. But after that, he should be able to add quite a few things to his diet.

Oatmeal and cream of wheat or cream of rice would also work very well. We added brown sugar and later raisins to oatmeal.

M can do cheese but not milkshakes - I think if she was able to tolerate milkshakes, we'd have had an easier time with calories.

I wouldn't worry too much about using high fat, high calorie stuff - he is not going to be on this diet for very long and he really needs the calories, especially if he's already lost 8 lbs. So, he should enjoy it as much as possible!
 

Tesscorm

Moderator
Staff member
Even in their 20s, they can have those 'moments'! :rolleyes: I was trying to tell him that he needed more calories and used the EEN 3000 calories as a frame of reference... he rolled his eyes and said 'Seriously?? I'm not going to start counting calories!' 'Umm, ok... I'll let you know when that six-pack are actually your ribs!' :ybatty:

Brought to mind what his ped once told me, when he was little and I was worried because he was so picky and ate so little... "Don't worry... I can't recall the last time a kid starved themselves to death in Toronto"... I guess the same applies now! ;)

But... I did buy the Cream of Wheat, cream of chicken soup, cheddar cheese soup, parmesan cheese (which he loves and puts on everything)... it's all there for the taking...

Maya, have you ever tried to make polenta? It's made of cornmeal and, when made freshly made (ie as soon as it's done), has the texture of soft mashed potato. It's a bit grainier because it's made from cornmeal but has a different flavour. M may like it and would add a bit of variety. Put what's left over in a shallow pan and it hardens. You can then slice it and grill or panfry it. At this point, it is harder, so not sure if it would be good for M but, it would be totally fine when freshly made. And, you can eat it with gravy or tomato sauce.

Here's an example:
https://www.soscuisine.com/recipe/polenta-tomato-sauce
 

Maya142

Moderator
Staff member
Thanks Tess, that's a good idea. I've never made it and not sure if Miss Picky will like it ;)! I'm going to ask though - we really need variety in her diet!!! I did remember that S's diet pre- Crohn's was much like M's - very picky, similar to the low residue diet.

Is S staying at home with you? If he is, can you use my fitness pal for a few days to see how many calories he's getting? That's what I do for M (if she stops tracking them herself). I'm doing the cooking, so it's pretty easy. Just have to estimate how much of her meal she eats!

It would give you a good enough estimate to show him - maybe if he sees he's getting 1200 calories, then he'll be more likely to follow through and push himself to eat more. You can also use my fitness pal to figure out how much he actually needs. He may not need 3000 since he's no longer growing.

Another option might be going back to NG tube feeds at night. I don't know if that's possible or realistic but thought I'd mention it.
 

Tesscorm

Moderator
Staff member
I can probably guess without my fitness pal. 3 Boosts, 2 bowls of soup, some mashed potato and a yogurt... off the top of my head, maybe 1200?? But, you're right... as he'd no longer growing and not playing any sports right now, he likely doesn't need the 3000 cal.

I don't think we're at the ng tube stage yet... he was about 175lbs last week. Someone told him to expect to lose 20-25 lbs??? I suppose, even if he goes down to 150, he'll be the very low end of average for his height (149-183 lbs).

But, thought of something today... haven't had to think about some of this stuff for a while now... the nurses at infusion centres adjust dosage at each visit depending on weight, right? His next infusion is Sept. 11 and I'm sure he'll have lost more weight by then... I don't need to contact GI or anything, do I? His GI did reply to my email and said S was good to go for his next infusion as long as there was no jaw infection. He didn't mention any concern re weight (and, he would know someone with a broken jaw will lose weight).
 

Maya142

Moderator
Staff member
If S loses as much as 20 lbs, then I would contact the GI before his infusion, unless they calculate the Remicade based on that day's weight.

M lost a couple lbs in the hospital but because of formula, she's been fine after that. We weren't told to expect that she'd lose anything at all (but we were also at a pediatric hospital where feeding tubes are common and they knew she had a J tube).

I'd honestly tell the GI a few days before the infusion so they can get the dose right. M once lost 10 lbs or so between infusions and because she was at 10 mg/kg and they wouldn't go higher, they had to call her GI to get the Remicade dose changed. That greatly increased the time we spent in the infusion center - it took forever! I don't know how picky they are about dose at his infusion center, but just in case, I'd tell the GI.

So using two internet calculators, they estimated that if S is 5'11 and 175 lbs and sedentary, he would need 2,500-2670 calories to maintain his weight.

So he definitely needs a LOT more than he's getting, if he wants to maintain weight.
 

Tesscorm

Moderator
Staff member
S is doing well. He had the first follow-up on Monday and surgeon said all looks good (just inside incision hadn't completely closed yet but no appearance of infection). Saw the x-ray and, poor guy, actually has four narrow plates attached! Two running parallel at back and two in front! But, pain and swelling has lessened considerably. He's finding his teeth are hurting more than his jaw - from the braces/wires and the elastics. His biggest complaint, now, is his diet. :( But, not much we can do...

Incision (on outside) was much bigger than I'd expected - 3-4 inches. :eek: But, surgeon did an amazing job - you seriously can barely see the incision! The smaller one on his forehead was much more noticeable when he came home.

Maya - question for you... surgeon mentioned gently 'massaging' around the incision to reduce adhesions. Has M ever done this? S and I thought he meant right away but I've read that doing that too soon can delay internal healing of surgical incisions (not necessarily jaw/facial though). Also, we have one of those rubber massage balls that you can freeze and that have raised 'spikes' (sort of). Do you know how soon he should massage? And if the ball/spikes would be too harsh (I tried it on my face and I can't even feel the spikes)? If you're not sure, he has another follow-up next week...
 

crohnsinct

Well-known member
Oh my gosh Tess! Just returning from a trip and reading this. It is awful! So sorry you guys are having to go through this. Poor S! Poor Mama! I am so glad he is back home with you and doing relatively well.
 

Maya142

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We weren't given instructions to massage Tess - but M started physical therapy about 3 weeks post-op. Her physical therapist used heat and then he did massage the muscles in her jaw but not really the incision. But hers is in a different place though, right in front of her ear and going up into her hairline. And M would not let anyone touch it.

But anyway her physical therapist said that the muscles we were focusing on were much lower down - like in her cheek. He massaged and "released" those.

I wouldn't put a spiky massage ball on a healing incision for two reasons. 1) It sounds painful :eek: and 2) You really don't want to put something that is not sterile right at the incision, especially if it hasn't fully closed! And even if it has closed, I'd still be cautious around it for a while.

I think S would probably benefit from PT but if that's not possible, definitely ask the surgeon what he meant. I would assume he meant S should just massage the area around the incision with his hands (washed hands!), but honestly, I don't know. M had a very different surgery, so I can't really say.

Can S chew yet? Any luck with soft foods? Is he keeping his weight up?
 

Tesscorm

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His incision runs pretty much along the bottom of his jaw towards his ear. The break there was just in front of joint but behind teeth.

This incision is closed, just a very small section (ie less than 1/2 inch) that has a scab. But, good point about ball not being sterile. I was thinking he'd be massaging around the incision, not right on it but, still... (btw, the 'spiky' ball sounds a lot more barbaric than it is! I'm thinking the picture I may be sending out is of a medievel ball and chain! :lol: The spikes are not sharp and I couldn't even feel them when I tried. ;) )

The massage was brought up because I asked about physio. Dr said he didn't think S would need physio but that's when he brought up the massage to break up adhesions. I remember he said to do it 'sooner rather than later' but not sure if he meant 'immediately'... especially now that I read that massaging to minimize adhesions shouldn't start too soon to avoid problems with healing process. Dr may have had a longer time frame in mind. As M is doing physio, I'm sure she gets the same benefit as what S's dr was suggesting with the massage alone.

No chewing yet. Dr. said it takes 8 weeks for bones to heal. He was pretty firm that no solid food for six weeks. Having said that, S is 24 and there are limits to what I can control... he has been adding well cooked angel hair pasta to his soup. It is very soft, so I think it's fine... and, he so much wants some 'texture'. I think this (and poached eggs) will keep things manageable for another week or so. Then we can start to add poached fish, larger pieces of pasta, rice...

So far, he's lost 12 lbs. We're okay for now because, I hadn't realized it but, he'd gotten up to 195lbs (especially after a week in Portugal) so he'd wanted to lose a bit. But, of course, losing at this rate for another month will be too much! Once he starts to lose more and he starts to see that he's getting too thin, I think I'll be able to get him to eat more. For example, yesterday, until I got home from work, he'd had two Boosts and one yogurt! Not even soup for lunch! Ugh! I made him two bowls of fattening cheddar cheese soup ;) and added the pasta... at least that filled him up.
 

Maya142

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:lol: I knew what you were referring to exactly - M has many spiky balls she uses for her back. Just was picturing a new incision vs. a healed one, I think, which made me wince.

Didn't realize he couldn't chew for 6 weeks - I thought it was 2 :eek:!!
 

Tesscorm

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Yep, soon he can chew anything that has no real substance or requires any jaw pressure, like mushy pasta, eggs, rice. His surgeon, just before he was discharged, had said he could start adding foods after two weeks but he'd hesitated when he suggested poached fish. The dr we saw on Monday was a bit firmer in stressing the no pressure when biting. The rule of thumb they've given is it's ok if he can 'bite' it using his tongue and roof of mouth. Dr said he's got lots of 'hardware' in his mouth :eek: so it's fairly strong but he's got to let it do it's job to allow the bones to mend without any shifting. He did mention the difference with other bones is that a millimetre makes a big difference in your mouth, imagine how a seed feels when caught in your teeth or a small chip... you feel the difference immediately and it feels 'big'. So, if biting too early causes shifting of even a millimetre, he will feel that magnified in his bite permanently (although you do become accustomed to it...)
 

Tesscorm

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CIC - yep, never a dull moment! Just relieved now that he's much better... and that it could have been so much worse if he hadn't turned his head! But, he's home and healing! :D
 
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Tesscorm

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Just an update... S is doing well. Incisions almost healed, pain is gone (or mostly), swelling 95% gone (maybe just a bit around jaw incision) and he's beginning to eat soft foods. He's maybe pushing it a bit but... he's just so craving food! He's had soft pasta, poached fish, etc. ... foods that are close to a real meal. He's lost 20 lbs :eek: but, hopefully, by adding a bit more food, like pasta, the loss will stop (or, at least, slow down)... he's got another 3-1/2 weeks until wires/braces come off.

Overall, all is moving along well :)
 

Tesscorm

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Bit of a glitch... :(

S's exterior incision still had some bits that were 'scabby'. There was a bit of blood in the mornings, on his pillow but it was clear that the scab was catching on the fabric at night, so we weren't worried... just putting polysporin on it, etc.

At today's follow-up, dr said it's infected (but no abscess). He's given him another abx prescription. Not a big deal except his remi was scheduled for this morning. :(

We had to cancel remi... and waiting for GI to call back tomorrow (he's away today). Just worried because today's infusion was already 6 weeks PLUS 3 days... adding another few days will take him to 7 weeks. :( Plus, hubby and I are leaving on Thursday evening for a two week trip (ugh, had to be now!! :cry:)

I'm not really worried about infection... it'll heal. Just worried about remi delay (and that I'll be away to help deal with infection...)

:(

Other than than, dr said jaw is healing well. Unfortunately, there is one tooth that may require root canal but we need to wait and see.

I'm a little worried that when he smiles, lip drops down below teeth on right side (ie :D) but it doesn't on the left side (where the bigger break happened, and the incision that is infected and where there is still swelling). If he 'forces' it, the lip does drop and look normal... so not sure if it's still because of swelling, healing, etc.??? I told S to ask at today's apptmt but he forgot once the infection conversation came up.

Hate that I'm going away just now. :(
 

crohnsinct

Well-known member
Aw Tess. I know how you feel. I had to go away with O in a bad flare once and she has had to deal with some crazy health issues alone at school.

I am sure he will be fine. A week delay once shouldn't set him back to much. Plus he has been drinking all those shakes to boost the Remicade AND he has always had high levels right?

I just can't believe all the damage those punks did. I want to hunt them down and.....
 

Maya142

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I'm a little worried that when he smiles, lip drops down below teeth on right side (ie ) but it doesn't on the left side (where the bigger break happened, and the incision that is infected and where there is still swelling). If he 'forces' it, the lip does drop and look normal... so not sure if it's still because of swelling, healing, etc.??? I told S to ask at today's apptmt but he forgot once the infection conversation came up.
They moved a nerve, didn't they Tess? That may be causing the drooping. I'd ask the surgeon though.

M's eye was initially droopy (for 6 weeks)and she had trouble keeping it open. It was due to swelling and because a nerve was cut. It still seems a little droopy to me when she is tired.

Nerves take a long time to heal.

I hope the abx don't cause any trouble. We were usually ok to get Remicade if M had been on antibiotics for over 48 hours.
 

Tesscorm

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Oh, I hope the Boosts do help! I hadn't thought of that... although I wonder if they help remi's efficacy only over a longer time period??? But, it has been three weeks of lots of Boosts. And, yes, last time we checked his levels, they were 12... a bit higher than the rule of thumb therapeutic levels.

And, I'm hoping if he starts on the abx today, that we can schedule by Friday or Saturday. Very annoying because S had a follow-up scheduled for Sept 3 (yes, on Labour Day), confirmed (in writing by hospital, etc.), but when he went for apptmt, no one showed up! The hospital's info desk reached another specialist/dr but he said he it would beat least 2 - 3 hrs before he could see S. S didn't wait and rescheduled to today. Ugh, if the apptmt hadn't been rescheduled, we could've dealt with this already! :ymad:

Maya, I'm wondering if it is the nerve :( I thought the nerve they touched was closer to the centre/right side but... we're certainly not talking about a large area. He does still have some of the numb/frozen feeling on his chin but he says its much improved but not completely gone... guess his lip thing could be part of it??

And, now I'll be away for his next apptmt... facetime?!? :facepalm: I really was going to go today but... I didn't want to be 'smothering' (hey, just realized smother and mother rhyme! :lol: Coincidence?!?!? :rolleyes:)

So, Maya, even when a nerve is cut, it heals itself?

(And, yes, CIC, I'd like to hunt the guy down too!!! :tank:)
 

Maya142

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Yes, the nerve grows back. But it never feels exactly the same as it was prior to being cut. M can feel it if you touch the left side of her face (by her ear) but she says it feels different there (the area where the nerve was cut) than if you were to touch some other part of her face. The sensation is different, if that makes sense.

It also takes a long time for the nerve to grow back - nerves grow slowly. My daughter still has some numbness where she had her hip surgery, even though that was almost a year ago!

I would guess it will fix itself, but it is something I'd consult the surgeon about.

How is he doing with eating now? Still on soft food?

I think it's ok have S FaceTime you during the appt. - sometimes I make my husband do that because he is so bad at taking care of himself!!
 

Tesscorm

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He's always been fine with me attending his apptmts but I don't think he'd actually go through the effort to facetime me into the apptmt! I'll have to settle with sending him notes/questions. ;)

Thanks for the info re the nerves. I will be back for his Oct. 1 apptmt - I will go to that one and be sure to ask about his lip, if it's still droopy.

The braces/wires still stay on for another 3 weeks but he has started adding in some foods, w dr's approval. He's had frozen mac and cheese (very soft) and I added roast chicken that I very finely shredded to make it a bit less 'processed'. :) He also had some pulled pork, small 'bites' so he could just swallow it. That's really all that he's added recently... he's been eating eggs, fish, mashed potato, etc. for a while now. (I know he's snuck in a fry or two! :lol:)

The weight loss has slowed considerably! He says it's been stable for the last week but he's gone from 195 to 168! (None of his pants fit him! :eek:) Unfortunately, he doesn't have a sweet tooth so I could add calories to his diet... Puddings, jello, ice cream, apple sauce, etc really don't interest him... he's honestly happier to go hungry than to eat a 'dessert' to satisfy hunger! Ugh (I wish I could do that tho! :lol:) I've been adding cheese to everything and using olive oil and butter to add calories. :)
 
Ugh--so sorry about the infection (and its unfortunate timing). I really hope that the antibiotics work quickly and the infusion can happen this week.
 
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Tesscorm

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Just had call from GI’s office. He wants to hold off on remi until S’s next dental follow up on Tues. 😞 This weekend is 7 wks since last infusion, so it’s not that we’re too, too long out but we moved to 6 weeks bcz, years ago, test showed no remi left at 8 weeks. I am so mad, upset that some loser a** has put S’s remi treatment at risk. 😞 :ymad:

I’m just hoping that, bcz he’s been in remission so long, he’s not burning thru it as fast... and, not sure if this makes a difference but, would the remi from his last infusion last longer bcz he’s lost so much weight since?? (Ie he wudve been dosed at 190+ lbs on July 28)

Just so frustrated... can’t even get excited abt trip wth this hanging over my head.
 

crohnsinct

Well-known member
I really don't think pushing one infusion out to 8 weeks should have too bad an affect on him. I have actually heard of adults sometimes missing an entire infusion for surgery etc and hopping back on and being fine or at the worst going into a small flare and going out of it within the next few infusions. At 8 weeks you are still well within the dosing guidelines...I just wouldn't let him think he could make it a habit;)

I was actually thinking the weight loss might help with the delay but really have no scientific backing on that BUT when you think about it, inflammation increases drug clearance and he doesn't have known active inflammation so that helps. Perhaps the weight loss helps AND I am guessing with all the pain and surgery etc he hasn't been as active as usual (i.e.: work, gym, soccer etc) so his metabolism must have slowed down a bit over the last several weeks and that should also help with drug clearance.

I know how you feel about the trip. I once had to get on a plane and travel across country with O filling the toilet with blood and waiting for an answer from the GI. But try not to worry or borrow trouble. How long is your trip?
 

Tesscorm

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CIC, yes, I was hoping all you mentioned wud help w delay... and hadn’t even thought of the slowing metabolism! Bcz you’re right, he hasn’t been active at all!

We don’t get back until 26th. First trip to Italy! Of course I’m excited but I will feel a thousand times better once I hear he’s booked AND finished infusion! 😊
 

Tesscorm

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Final update on this (hopefully :))...

Wires/braces came off this morning! :applause:

He's back at work... remicade infusion ended up being delayed almost two weeks :eek: but he had no problem at the infusion. I'm reassured that, coincidentally, he has a routine scope coming up in November so, if there were any ill effects due to the delay, I'm hoping we'll see signs quickly.

His lip is still a bit droopy and there is still some swelling (no infection) - surgeon said droopiness can take up to a year to heal... and swelling can take weeks/months... but all looks fine. He has another follow up in 2 weeks - so I'm really glad they are so on top of it!

So, I think this is it for this 'experience'... let's hope there are no similar experiences like this again for anyone! :ymad:

Thanks all! :hug:
 
Glad everything is going so well--what a relief for him (and you!).

Hope that you were able to enjoy your trip! :)
 

Maya142

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So very glad he is feeling better and done with the wires!! What is he eating to celebrate??
 

Tesscorm

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Maya - He's still a bit limited on the food... :lol: so no real celebration yet. :)

Surgeon told him to gradually add more and more but nothing really hard or that tugs at your jaw (I suppose bread with hard crust, etc.). Was going to make steak last night but was questioning it, so hubby suggested making 'steak risotto'! :) Small pieces and soft!

Risotto might be an idea for you... you can add just about anything (veg, chicken, beef, etc.) and, as it simmers for so long, makes everything soft. :)
 
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