We r no longer remis or humis. :(

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coolbeans

coolbeans

Joined
Jan 13, 2017
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Hi all-- been a while since I have been able to get on here. DD has been in the hospital since a week ago Tuesday. She was dehydrated (possibly from a stomach bug) and in the middle of a flare. She had lost several pounds in no time. They tested her Humira levels and discovered she had developed antibodies. Boo!! So now they have her on some kind of new med that just became available but she can't take it for long due to side effects--it's only supposed to be used as a boost for other meds.

The dr says there is another Med to try but it is only been used in adults so she was going to do some more reading on it. I will have her write down the names to post later.

Another option they have given is a diversive ostomy? to give her colon a break & allow the inflammation to subside. While doing that they would also put n a G tube at the same time. Her scopes show lots of inflammation n the colon vicinity. It looked really bleak Monday after the scopes but Tuesday thru today she has rallied---eating, drinking & having more formed Bms. They r going to start her back on formula tonight to supplement her eating. I hope it works--she has gotten sick both times they have tried it while she's been here.

I don't want to put her thru surgery if its avoidable but the meds sound mighty scary. Anyone have any advice?
 
Ds had a reaction to remicade
And humira lots effectiveness
So he just started Stelera
It is approved for adults with Crohns

That might be an option to ask about
Possible Side effects are similar to humira /remicade
 
We were using peptamin 1.5 & she complained about tummy pain. Then she got sick & vomited the tube out at home. We had appt on that Tuesday so they advised they would put it back in but then she had bug & couldn't keep anything down. they tried it again & she got sick again so hubby & I asked if she could try a different formula. Drs don't think it's the formula but are willing to try something else. Just seems kind of ironic to me that it keeps happening on that formula but she was ok when they ran just pedialyte thru the tube.

Thanks for the other options--I will b bringing those up the next meeting. I could only recall entyvio this am & wasn't sure it was for kids.
 
They use entivyio Simponi cimzia and Stelera in kids

Just not FDA approved for kids
But humira wasn't approved for kids when Ds started it 5 years ago either


Ds was hospitalized last year same issue
Peptamen jr would run through him

And pedialtye was fine
Tried switching to elemental neocate jr
No issues and he has been fine ever since
That was the last effort prior to tpn

Peptamen jr has some lactose in it
A small amount but still some

And is milk based protein

Neocate jr is pure amino acid
So the intestine heal since they done have to work much
(Not much waste )
Avoid the prebiotic kind of neocate jr
It can cause diarrhea
 
There are definitely other options - Entyvio, Cimzia, Simponi and Stelara. My daughter is older (over 18 now) but has been on all three - Entyvio, Simponi and Cimzia. Our children's hospital has used all three in kids and is also using Stelara now.

I would get a second opinion before surgery, unless of course it is urgent.

I would also consider EEN - 100% formula. It's hard, but surgery is hard too. And she already has a tube. That might get her into remission while you are waiting for a new medication to kick in.

In addition to the Humira, is she also on something to prevent antibodies? MTX or 6MP or Imuran? If not, I'd ask about those. Also, how high are her antibodies? Sometimes, if they're just a bit positive, then you can up the dose and the kiddo will start responding.

I would also push for an elemental formula. My kiddo had bad diarrhea on Peptamen jr. She switched to Neocate Splash and was fine. It tastes a LOT worse but since your daughter has a tube anyway, that isn't an issue. There are some kids who just need elemental formulas. Neocate Jr is another one, as is Elecare.

The G-tube surgery is a relatively minor surgery. It's usually 1-3 nights in the hospital. My daughter was at school two weeks after the surgery (we did it during the summer, so that's when school started). The first few days were pretty rough - her stomach was very sore - but after that she recovered quite quickly.

If she's going to need formula for a long time, then a G tube makes sense. But before doing an ostomy, I'd consider a second opinion or even a record review (unless of course it is urgent). Remicade and Humira are the only approved drugs for kids, but the others are now being used routinely.

Cimzia is an injection - every 4 weeks or every 2 weeks. My daughter is on it now and is doing well. It is in trials for pediatric Crohn's. It has been approved for adults with Crohn's

Simponi is only approved for UC in adults. It is occasionally used off-label for Crohn's. It's a shot every 4 weeks.

Entyvio is an infusion every 8 weeks after the loading doses. It is approved for adult Crohn's and UC - had better results in UC. But it is being used off-label for both pediatric Crohn's and UC. There are several kiddos on this forum who have been on Entyvio (including my daughter).

Lastly, Stelara is injections every 8 weeks (after an initial infusion) - just approved for adult Crohn's, but is also being used off-label for pediatric Crohn's.

CHOP, BCH or Cincinnati Children's will probably all do a record review. my little penguin can confirm that. Those are the three biggest pediatric IBD centers.

What is the new med she is currently on?
 
The medicine she is getting now is called tacrolimus 1.5mg. She is also on imuran.

Thanks so much for the details on the meds. I am definitely going to get some answers from the dr tomorrow.

She did really good eating today & met the calorie goal so they aren't going to do the formula tonight. That gives me time to approach them about the elemental formulas which I plan on doing tomorrow.
 
Tacromilus is suppose to be a bridge drug prior to surgery
That said two parents in here have used it longer term
They don't visit much since for one it worked well for 3-4 years if I remember correctly

Strongly suggest a second opinion. Since there are so many more options that have better safety problems files
Bch has online second opinion
Chop and cchmc(Cincinnati) will also do record reviews quickly
I would call now
Your hospital can forward over the records electronically in a day
 
I agree - Tacro is a bridge therapy and is usually used to for just a few months. It can impact the kidneys, I think, which is why they don't like to use it long-term.

I think the parents on here that used it had to use to get their kiddos healthy enough for surgery. That was before biologics other than Humira/Remicade were being used on kids.

I would definitely talk to your doc about other biologics. I think they could continue to use tacromilus until the next biologic kicks in. EEN would also help to induce remission.

I would definitely suggest a second opinion, since it sounds like your GI doesn't have much experience with using the other, newer biologics. A second set of eyes is very helpful before making a big step like surgery (especially since it will involve an ostomy which is going to be hard for any kiddo, especially a teenager).

Cimzia and Simponi are anti-TNFs, so the side effect profile is about the same as Remicade/Humira.

I don't think Stelara or Entyvio are considered riskier either. Entyvio is gut specific, so it's supposed to have fewer side effects, theoretically (less immunosuppressing).

It's just a matter of what your doctor wants to try. Considering she has built up antibodies to 2 anti-TNFs, they may want to try something different like Stelara or Entyvio.

Good luck!
 
We were told Stelara is safer for some types of infection risks over
Anti tnf
But that wasn't why we chose it
 
We were told that too actually.

Another thing to think about - both Stelara and Entyvio are slower acting than anti-TNFs. We were told 6 months for Stelara and that it could be even longer for 6 months for Entyvio.

So you will probably need a "bridge therapy" while you are waiting, if you choose either of them. That could be steroids or EEN or tacromilus. Sometimes if EEN is not working and total gut rest is needed, TPN is used. It is riskier than EEN, so usually EEN is tried first.
 
CHOP is children's hospital of ??
BCH is ?? Children's hospital

I have my notebook out & am preparing for dr meeting. I wish I had posted earlier but you all have been fabulous.

They told my husband that if she didn't tolerate feeding thru the ng tube then she wouldn't b able to use the g tube either. I don't know where they get off saying that if they haven't even tried but one formula!! There will be discussions about that tomorrow also. I am not giving up on it just yet.
 
CHOP - Children's Hospital of Philadelphia
Boston Children's Hospital (BCH)

That is absolutely not true - some kids need elemental formulas.

There is also the option on an NJ or GJ tube, which would bypass the stomach and go straight to her small bowel. That is usually needed for a motility disorder and less often for IBD.

What rate is she at? Is she on continuous feeds or bolus feeds? It was trial and error for us - finding the right formula and rate.
 
Chop
Children's hospital of Philadelphia (#1 in the country )

Bch
Boston children's hospital
They have online -video cam second opinions
Doctor to doctor second opinions I believe are quicker
But speak to the folks at
Chop and bch yourself first to find out

Cchmc (Cincinnati children's hospital )

All three have ibd center website with all phone numbers and info

Ng vs g tube
If you don't tolerate a specific formula by ng
Then you won't tolerate it by g tube

That said semi elemental is only partially broken down
AND her version 1.5 is more difficult for most kids to digest /handle than 1.0 formula

Not sure why they didn't explain things

Please personally call bch /chop /cchmc
One of them should be able to help quickly

Just throwing it out there some have used ivig as bridge therapy until the biologic kicked in
Other een and/or oral steriods

Big hugs
 
^My kiddo did not tolerate Peptamen Jr 1.5 at ALL actually - lots of nausea, belly pain, diarrhea, cramping etc. She tolerated 1.0 better - no nausea or belly pain, but she did have diarrhea. They initially thought the diarrhea would go away, so we stuck with it for several weeks. It did not.

So then we switched to Neocate Splash and it was like magic - no diarrhea.

The rate she could tolerate by NG tube was 75 mL/hr at first. Later she developed a motility disorder - Gastroparesis (slow or delayed gastric emptying) and could not tolerate NG tube feeds at all. At that point, we knew a G tube wouldn't help - her stomach just could not tolerate liquids (much less food). So that's when we knew she needed an NJ tube (and later a GJ tube).

But the first step is generally to switch formulas. She may even tolerate Peptamen Jr 1.0 but honestly, I'd go straight to elemental because it's by tube anyway and you don't have to worry about taste. That is most broken down and easiest for the gut to tolerate.

Depending on how long your daughter has been malnourished, it may also take her time to get used to tube feeds. When my daughter had lost a LOT of weight - 25 lbs or so - it took her longer to get used to them. This was when she had the NJ tube.

She was given Levsin for abdominal cramping and Zofran for nausea. She took them for a few days, maybe a week, and then her body adjusted. We did play around a lot with the rate till we figured out what she tolerated.
 
I'm going to tag pdx since her daughter also had formula issues, if I'm remembering correctly.
 
Super info--they may be in our room half the day. Haha!!
I have the info on the hospitals for record reviews written down & will try to call them in the am. Do I just ask them to initiate the process & they contact current hospital & get the info?
I have a feeling they are going to send us home in the next day or so because she is eating & drinking & is no longer passing blood but I don't want to be back down here in a week or two if it can be prevented. With our luck they will turn us loose Monday in the middle of the eclipse that is expected to shut this city down. Ugh!!
 
They can't contact the second opinion place unless you give everyone permission etc..
Contact chop bch and cchmc in the morning each has a specialist who can answer all your questions quickly
They get lots of phone calls for second opinions and do it a lot
Most have teams of folks just for that

Very helpful to us
But Ds wasn't inpatient or in a hurry for the second opinion so we were going in person
 
Actually Cincinnati isn't much farther away than where we r now so we could go there if it was needed. I will call them tomorrow & see what they advise. Thanks again.
 
So sorry that your daughter is having such a hard time. :ghug:

And yes, my daughter also had trouble with Peptamen 1.5. For her, the issue was that all the kid's versions of Peptamen contained a fiber supplement that left her nauseated. Flow rate was also an issue for her. We got rid of the nausea by switching to adult Peptamen 1.5 (which didn't contain the fiber supplement), and we had to slow the flow rate quite a bit too. So playing around with formulas and flow rates can definitely make a difference.

I really hope you can find a formula that works for her, and that you can figure out a good set of next steps too. I agree that a second opinion might help at this point.

We're close to the eclipse path here too. :) Hope it doesn't end up causing problems for you Monday.
 
They are going to increase the Humira & see if that will work. If not we are going to try stelara. The person I needed to talk to about a second opinion in Cincinnati wasn't in today so I am going to follow up with them Monday. Luckily it isn't terribly far from us if we need go there. Also we are going to go with one of the elemental formulas for feeding. We get to go home tomorrow-- praise the Lord & hallelujah!!! Thanks for all the great advice.
 
MTX is given more often now, but it's not better. It's generally considered safer though, especially in boys. That's why they like to use it more. Our GI will only use Imuran/6MP if MTX fails now.

Glad you have a plan!! And glad you get to go home!
 
I really hope the increased Humira dose works! My daughter's Crohn's was flaring last fall, and she had started developing low levels of antibodies to Remicade. Her doctor increased her dose of Remicade, along with restarting methotrexate, and it worked. Her Remicade levels are up, her antibody levels are back to being undetectable, and she's out of the flare.
 
we were released from the hospital a week ago Saturday & she has not stopped eating since. She has gained about six pounds. She still has the ng tube in place but only using it for meds at this time. They are counting on her eating to gain so they have stopped the feedings. We have an appt this coming Thursday & I am going to press for them to start them again. As she is coming off the steroids she is going to slow down eating & I don't want to lose any progress.
She is only taking the tacro at this time. They want to get those levels up to a certain point then reintroduce the Humira. Hopefully Thursday will yield some needed answers. Thanks for checking on her.
 
How long has she been off Humira? I'm kind of surprised they would take her off it when she has antibodies. Are they planning to do the loading dose again when they put her back on it?

I'm asking because the longer someone is off it, the more likely they are to build antibodies - the goal is really to have a constant level of Humira in the blood.

So I guess the NG tube was only for supplemental feedings and not for EEN to induce remission? It's great that she is feeling good enough to eat (I agree, that is definitely the steroids!) but if you want to use enteral nutrition to induce remission, then she really needs to be getting at least 80% of her calories from formula/20% food if not more formula.
 
Her last Humira dose was two weeks ago Friday. They are planning on the loading doses again then increasing the maintenance dose. So the antibodies will increase the longer she is off it? I am hopeful we can start again after the appt this week.

The feedings were originally supposed to get to 80/20 but the peptamin didn't agree with her & they unknowingly think she is going to be able to eat enough to sustain weight gain ( which I believe will be impossible). I am really going to push for one of the elemental formulas to be introduced asap & hopefully by the time the steroids are running out we can be on the road to continual weight gain that can be maintained. I think that was their main goal for the feedings b/c she just wasn't able to gain any weight at all & is way way way under the growth curve for her age. I will definitely question them about using it to induce remission for her which would be absolutely wonderful.
 
They could increase...the science is not quite precise yet - some people continue to respond when they have antibodies and others stop responding yet have no antibodies. Sometimes adding something like MTX and increasing the dose gets rid of them or lowers them.

But in general, stopping the drug and then restarting it can decrease the chance of it working later.

I have one kiddo who stopped Humira for about 3 weeks for a minor surgery - when she went back on, it never really worked again.

This was before the antibody tests were used, so we don't know if she had antibodies.

That is obviously the worst case - her rheumatologist said generally people do not stop responding if the break is short (like just a few weeks). They flare, but they regain response usually.

But considering your daughter already had antibodies and now probably has no Humira left in her body, it's a little bit worrisome.

I'm not familiar enough with Tacromilus to comment on why they're doing this. There must be some reason.

I would definitely push for an elemental formula and even try to get her to do 80 EN/20 food. It may REALLY help get her into remission and hopefully the increased Humira dose will keep her there.

Plus, it should really help with growth and weight gain.

Steroids will help with the weight gain, but not growth. And of course, as you taper, her appetite will go away (or back to her baseline).
 
Wow
Surprised they would go from "severe she needs surgery "
To "oh she can just eat enough solid food to gain and doesn't need formula "
Wow 😳

Can you get a second opinion at cchmc asap?
I thought they were putting her on elemental formula before she left the hospital?

Stopping humira can make it stop working
Every time you stop the risk of it NOT working again increases significantly

Ds stopped humira more than once
This last time it stopped working

He is now starting Stelara
 
Maya142--from what they explained to me, they are using the tacro as a supplement till the humira or whatever they decide will start working. It is sounding like the chances of the humira working are decreasing by the day. :(
I am definitely pushing for the elemental formula--by the time the steroids are decreased, we will lose momentum if we don't do something now. She is really gaining weight right now (about 10lbs) so I figure they will all think I am nuts to suggest formula when she seems to be doing so good. However we have been on this track several times & I seem to be the only one who remembers how it seems to end if we don't do something.

Mylittlepenguin--"Wow
Surprised they would go from "severe she needs surgery "
To "oh she can just eat enough solid food to gain and doesn't need formula "
Wow �� "----I know, right!!!! I have pondered the same thing. All I can say there is praise the Lord she had a great turn around but she definitely still needs some help reaching the point she will consistently gain & stay out of a flare if possible. :)


I called CHOP & they do "peer to peer review" so that may be the route to take; I couldn't get in touch with Cincinnati & haven't had a chance to try again. I will do that now to see what they offer. Luckily they aren't terribly far from us if we had to make the trip there in person but hopefully it wont come to that.

I was concerned about the nonchalant attitude I was getting regarding the Humira when we were released but now I am really concerned. UGH!! Why cant this all just be easy? I pray that it works & they can tell quickly so we don't continue to lolly gag around with my childs health.

On a surprising note, she is very at ease with the ng tube now & loves it for the medication. We still haven't worked up the courage to try to change it & I don't know if we ever will after they traumatized her with it while in the hospital. She keeps asking about the g tube b/c she wants to be able to shower & wash her own hair & swim--if we do elemental formula & it seems to work, we will explore this option more. This is quite a turnaround for her. However, they have school pics Friday & she doesn't want to do them with the tube in--I am leaving it up to her. We went to our favorite Mexican restaurant yesterday & our favorite waiter was educated on the ng tube=it was very interesting to say the least. :dance:
thanks.......
 
Maya142--from what they explained to me, they are using the tacro as a supplement till the humira or whatever they decide will start working. It is sounding like the chances of the humira working are decreasing by the day.
Click to expand...

I understand using Tacro to get her into remission, but I don't understand stopping Humira, especially since she already has antibodies.

The weight on the steroids - some of that is probably water weight and will go away. My daughter always gained a little weight on steroids but usually lost it very soon after we stopped them.

I would definitely push for the tube feeds. They can't hurt -- they will only help. Just because she didn't tolerate one formula doesn't mean she won't tolerate others. We went through several before we found one that worked for us.

I'm glad the NG tube is going well. But she should be able to shower and swim with it!

My daughter had an NJ tube for over 3 months. She swam with it, showered with it, went to an amusement park with it - no restrictions. For swimming, just make sure it is taped well. Same with showering.

With an NG tube it is even easier because it's easy to replace. With an NJ tube, it has to be done by an interventional radiologist.

I know she had a bad experience in the hospital, but it is actually easier to change yourself according to my daughter. She also had a bad first experience - the nurse that put her first NG tube in basically shoved it into her nose.

It hurt a lot and she hated it. She was so upset that night. Her nose was sore, her throat was sore, it hurt to swallow.

But the next night when she did it herself, she was able to feel it, so she knew how much pressure to put. She didn't have to roughly shove it down really fast. She was careful and sipped water while inserting it and it wasn't traumatic at all.

She figured out that for her inserting it through her left nostril was easy. The right one she could do, but it was harder. It turned out this was because she has a deviated septum. Many people have them but most don't find out because they're not sticking tubes in their noses!

I would also make sure to use lots of lubricant and have the smallest tube (6 Fr). She inserted it with the guide wire and then pulled the wire out. The wire made it easier to insert.

You can also learn to insert it on her if she's still too afraid to try it. But my daughter said it was MUCH easier than she expected. And within a week or so, she was doing it in 10 seconds.

As for school pictures, if she learns how to insert it, she could choose to just to feeds at night. That is what my daughter did.

In the long-term, a G tube does make sense, especially since she is having trouble with growth and gaining weight. It is a surgery, but it's not too bad.

CHOP is very big on enteral nutrition, so hopefully they will give you more guidance on that. You might want to check with both CHOP and Cincinnati since both are likely to have quite a wait, and you want your daughter seen soon, given her condition.
 
For tape - we used Hypafix. It held up well, even in the shower. My daughter usually changed the tape after a swim or shower, because it was so wet but it still worked well.
 
We had to go this morning for labs & I signed the consent forms for them to consult with Cincinnati & Philadelphia. Hopefully they can help her GI come up with a workable plan.

I advised the nurse today that I wanted her started on feeds when we go back Thursday. She agreed & said she would set it up.

I will let her read your comments about how easy your daughter said it was to do yourself & also about taping it up. That will make her day. Thanks. We have not been able to do our annual trip to the amusement park so with your help we might get there after all.
 
There are also stickers: https://www.kidshopechest.com/feeding-friends-stickers.aspx

They're on medical tape, which is very gentle (worked better for my daughter than duoderm and tegaderm which caused a rash). At first she said they were too baby-ish, but then decided to use certain ones. We got the "girl stickers" and she would only use the ladybug, heart or flower.

She got a lot of compliments on them - even as a high school senior! They sort of took away from the medical aspect of it.

For swimming, we would do a layer of Hypafix (or the feeding friends stickers) and put a layer of tegaderm over it. We tried to position the tegaderm so it didn't touch her skin (since it irritated her skin). We just cut it to the right size.

She would just tuck the tube behind her ear and move on with her day. When she was on continuous feeds - 18-20 hours a day - she carried the backpack around. You can even get custom backpacks on Etsy that are not too expensive - that way she can choose a nice colored one. M used the regular black one that our DME provided us with - the mini backpack that goes with the infinity pump. It worked well.

Inserting it sounds VERY intimidating and my daughter was terrified the first time. But it was surprisingly easy. She did it in front of a mirror, while drinking from a glass of water (through a straw). It really just goes down very easily once you figure out the right angle.

And if one nostril doesn't work or hurts, definitely try the other.

I definitely understand her being scared - after the nurse did it the first time in the hospital, my daughter just sat and cried because it hurt so much.

But when she did it herself, she was fine! First few times it was uncomfortable, but after that she really got good at it.

When she was inpatient doing a pediatric pain rehab program, they had a talent show. M wanted her talent to be inserting an NG tube. She had a GJ tube by then, so she had no need for an NG tube - she just wanted to show off how easily she could do it ;)!!
 
That is awesome!! We had a mental picture of your daughter n the talent show. You go girl!!! R is amazed that she can gross the boys out by showing them the tube in the back of her throat. Haha!!

Specifically how did u tape it up when showering/ swimming? Did you do "both" ends? Tape over one nostril?? She was very excited when I told her about your post.

She is getting more comfortable with it-- she even let me post her pic on FB today. We went to her favorite restaurant today & they hadn't seen her n a long time so of course there were questions. Turns out one of the ladies there has CD too. She gave them an education. Haha!!
 
We just taped it on her cheek - just the part that is coming of her nose. Just how we'd do it normally.

This page has a picture of a baby with a tube: http://www.feedingtubeawareness.org/tube-feeding-basics/tubetypes/taping-nasal-tubes/

That's kind of how we did it, except the tape was a little higher up on her cheek because we'd tuck the tube behind her ear. And we didn't use the Duoderm + Tegaderm combo because it really bothered my daughter's skin, we used Hypafix or the Feeding Friends tape/stickers.

The other end (the end you'd connect to the pump) was left hanging, so we tucked it behind her ear. If she is actually swimming laps (which my daughter did), goggles will also help it stay in place.

The one thing I'd say is to take extra tape wherever you go. If she feels it coming unstuck at the pool, get out and put on a new piece of tape. We carried an "emergency kit" containing several kinds of tape and syringes for meds, plus dixie cups to hold water for flushing her tube (if she had to take a med while out).

When she had an NJ, they would mark the part of the tube that was right outside her nostril - so we'd know if it had come out further. They just used a sharpie. We did that too, when she had an NG tube. That way she knew how far down to stick the tube when she was inserting it. If she does decide to learn how to insert it herself, they will teach you how to measure it, so you know how far down it has to go.

But anyway, having that mark helps because then you know if the tube has slipped out a bit while swimming and you can just push it a little further in. It usually didn't move much - we used several layers of tape. But if it did, not a big deal, especially for an NG tube.
 
I'm sure I've already sent you this, but this has lots of info on taping and the kinds of tapes you can use: https://agirlandhertube.blogspot.com/2011/11/adhesives-part-1-adhesives-taping.html

We got Tegaderm and Duoderm through our DME supplier. When those didn't work, I just bought Hypafix off Amazon. It is pretty cheap (as far as I remember) and one roll lasts a long time. Same with the Feeding Friends stickers - just ordered them online.
 
Wow that is great.. I don't know why we were making such a huge deal of it. You have sent me the tape link but I will review & get some hypafix ordered so we can get back to normal activities.

We have all kinds of emergency kits--kind of like traveling with a baby but bigger items. 😁
Although I did forget her shoes at the last dr appointment--I had to piggy back her thru the hospital. Haha!! Now there r flip flops n every vehicle.
 
Other thing we carry in our emergency kit - an extra pair of underwear and wipes. My daughter has a make-up bag in her backpack with them. No one would ever her question taking out a make-up bag from her locker in high school or from her backpack.

So if you're going to make an emergency bag for the tube, might as well stick those in too ;). You never know when you'll need extra underwear with IBD!

The tube is VERY intimidating and scary in the beginning, but just like the blood draws and shots and infusions and hospitalizations, it becomes "normal."

The fact that we own an IV pole? No big deal.

The fact that my daughter can change her G tube? She thinks it's cool that she can do it all by herself (she also enjoyed sending pictures of the disgusting 6 month old G tube to her older sister).

We have three closets full of medications and medical supplies...not a big deal either - we have to keep them somewhere!

You will figure it out - you find a new normal. It's hard at first but it really does get easier over time.
 

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