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Changes to infusion routines?

E has her Remicade infusion next Wednesday, and I just got a call from Kaiser explaining their new procedures. The good news is that the infusion center is no longer sharing a waiting area with Urgent Care; they've moved upstairs into the day surgery area. The bad news is that patients can't bring anyone in with them--I can go in to check her in, but I will have to wait in the car during the actual infusion. I'm kind of worried, since infusions are still not easy for E, but considering that she's almost 18, it's probably not a bad step for her to take. I really really hope that her favorite nurse will be there...

Anyone else dealing with new routines?
 

Tesscorm

Moderator
Staff member
For S's last infusion, they called a couple days before and asked typical covid-19 related questions (fever? travel?, etc.). I don't usually go with S so I'm not sure if I would've been allowed in but I would guess 'no'. Our clinics usually have two infusion shifts, at 9am and 1pm. S said they've taken out some chairs and now have an additional shift at 4pm.

But, as far as I know, that's it...

Can you facetime with her throughout the infusion?
 
Same as Tesscorm, however, I believe they still allow for a parent if child is under 18. But this is Ontario Canada. There
was screening but no masks worn by the patient, but the room only has about 4 people being infused and there is no waiting area. I dropped my son off and went to a drive-thru and picked up a coffee and read in my car. It wasn't a very warm day for a walk. Then I went to pick up some groceries as I had a lot of time. :)
 
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Tesscorm

Moderator
Staff member
They had no masks at L's infusion centre? S wore one there but, it was a bit dirty so they actually gave him a clean one. I'm really surprised they weren't giving out masks.
 

crohnsinct

Well-known member
I think I wrote elsewhere about the AGA recommendations and our pediatric center is following most of them. One parent is allowed to accompany each child under 18. Temps taken before you can even get past security in the lobby of the hospital and masks given. Once in the center all staff wearing masks and only one nurse and same nurse throughout infusion. Our infusion center also does chemo and from what I have heard they have moved the chemo patients to another area.

O recently had her infusion at an independent infusion center. No screening questions, no mask for patient. She was the only one in the room and only one and same nurse throughout.

I admire your willingness to let her try the infusion on. her own. I know she has some extenuating circumstances and I would be VERY tempted to ask for special consideration, you are my idol! Also glad she can keep her GI for a while longer.

I love the idea of face time. Totally wouldn't have thought of that.

Good luck!
 
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Turns out the person who called me was just wrong—peds patients get one parent with them. But E was ready to go in by herself if she had needed to, so that was good to see.
 
Also meant to add that we passed through a couple of checkpoints on our way to the infusion area. They asked us about symptoms and had masks to give out if we hadn’t brought our own.
 

Maya142

Moderator
Staff member
Way to go E!! Is there any special thing that might make infusions easier on her? I'm just thinking of the future...Is she planning on college? If so, getting used to infusions alone might be a good idea - and if she's taking MTX by injection, then to transition to her doing the injection. You could do it in baby steps - in the beginning you could be there for the hard part of the infusion (the IV stick) and then after a while you could leave and sit in the car. Then transition to her doing more of the infusion by herself, you going a bit further away than the car (for example, to a local coffee shop) vs. telling her you will be there in the car the whole time, in case she needs you. Same with blood work, if it's not being done at the infusion.

As for anxiety etc. being extenuating circumstances. Generally, they are. But my kiddo has PTSD from medical trauma as well as anxiety, and while we begged and pleaded, there was absolutely NO way they would make an exception for a hospital stay during this COVID period. She's always had me stay with her in the hospital - and I still do so, though now I often leave her for several hours or more to go home and rest and shower. But I'm always there to advocate for her. This was the first time she had to manage entirely alone, and given her anxiety and PTSD, it was very tough on her and I honestly think the extreme stress of being hospitalized, in terrible pain and feeling like no one would listen made her pain worse. But despite a long history of anxiety and PTSD, there was just no way around the rules in this situation - they were VERY strict about not allowing visitors - not in the ER, on the floor - not anywhere but for hospice patients, minors (1 parent) and premature babies in the NICU.

I should add that my daughter is over 18, so this doesn't necessarily apply to younger kids. But for 18 year olds, it would probably apply. I understand why, of course, but it was still very hard!
 
Maya, I'm so sorry to hear about M's latest hospital stay, both that she had to be there, and that you were not allowed in with her.

Your ideas about baby steps to get E ready to do infusions on her own are good ones. She plans to come home from college for her infusions, but if the COVID precautions are still in place this summer, she'll have to start going in on her own in July when she turns 18. She is planning to go to the college health center for her MTX injections, but it would be great if she could do them on her own. We'll see. She's tried to do the shot herself, but she just can't make herself push the needle in. Autoinjectors for mtx are really expensive, so that's not an option.

Unfortunately, college may be online next year, so we may not have to worry about the injections for a while...
 
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