Medical healthcare vent

[Tap]

DD12 is autistic but verbal. She is mentally about 3rd grade level. She is halfway through a prep for a colonoscopy tomorrow.  They just called and said they may not be able to do the procedure, but we won't know until we get to the hospital tomorrow. GRRRRRRR.  

She may have Crohns or Ulcerative Colitis so this test is very important, but still in the grand scheme of things considered elective. She has pseudo-seizures from the GI pain, so not just a minor inconvieniece, but also not really life threatening. BUT.....we won't know if it is something more life threatening unless we do the test!!!! She has bloody stools and chronic diahhrea. So we know something is wrong, just don't know what it is.

The problem....she  is 5'10" and almost 300lbs. She has a true PTSD fear of needles and won't let them start and IV or give her a shot unless she is completely put under with gas first. Her weight is causing the problem, in that it increases her risk from the gas.  The person who called today, said depending on which anesthesiologist gets her case tomorrow, they may deny gas as an option.  There is no other option for her! Oral things that make her chill, aren't enough to get her to allow them to put a needle in her. Nitrous isn't either. It must be full sedation. :0(

I can understand this all. I don't want her getting a dangerous procedure either. But....I told the doctor when he scheduled it and he said, "no problem". I told the schedulers and they said, "no problem". I told the pre-procedure nurse who says, "no problem". It wasn't until the person who assists with complicated cases (not child life services but similar) reached out and said, "by the way, this may be a problem".   UGGGGGGHHHHHHH.  If we weren't over halfway through the prep, I would cancel and say let’s find another way.  But we are.....OY!  

[Selkie]

Oh no, I really hope they find a way to make this happen tomorrow! Hugs!

[Annie G]

I’m so sorry! Hope things work out for her tomorrow.  Hugs to both of you.

[scholastica]

So so sorry!

[Loowit]

I am so sorry.  I hope that they are able to make this work for her.

When my DS needed an MRI a few years ago.  I think he was 13.  He had to be sedated because he has sensory issues and he needed to be completely out.  I didn't realize until we got there that the IV had to be started while he was awake. He was very scared of needles, but they told us that at a certain age that giving gas first has too high of a health risk.  I am not sure why though.  It took a lot of people holding him down to get the IV started.  We had to do the MRI, but it was so very  hard.  I am just glad he has no lasting trauma from it.

[Tap]

18 minutes ago, Loowit said:

I am so sorry.  I hope that they are able to make this work for her.

When my DS needed an MRI a few years ago.  I think he was 13.  He had to be sedated because he has sensory issues and he needed to be completely out.  I didn't realize until we got there that the IV had to be started while he was awake. He was very scared of needles, but they told us that at a certain age that giving gas first has too high of a health risk.  I am not sure why though.  It took a lot of people holding him down to get the IV started.  We had to do the MRI, but it was so very  hard.  I am just glad he has no lasting trauma from it.

The trauma of being held down is what caused the PTSD. 😞  She was on Lithium when she was little and had some bad blood draws. Not just one, but many. Over time it morphed into a full blown, primal fear.  Once the line is in, she is fine. It is just the needle piercing her skin that makes her flip. 

[73349]

Hopefully a nurse will invite the anesthesiologist to look closely at the options and make the right decision. Even if gas first is really not possible, there should be a way to do an anti-anxiety med first.

[beaners]

I'm so sorry. We have gone as far as getting to the hospital for sedated tests before being told the right person isn't able to do my daughter's anesthesia so it needs to be rescheduled. For us it is a genetic syndrome that also has increased risk of death under sedation so we need someone familiar with our girl and with her syndrome and with a lot of experience.

But it is inexcusable when this part of care isn't coordinated ahead of time. Plus there are always the people who try to wave it off, "Oh, it will be fine honey." Uh no. Nope. 

[Tap]

25 minutes ago, beaners said:

I'm so sorry. We have gone as far as getting to the hospital for sedated tests before being told the right person isn't able to do my daughter's anesthesia so it needs to be rescheduled. For us it is a genetic syndrome that also has increased risk of death under sedation so we need someone familiar with our girl and with her syndrome and with a lot of experience.

But it is inexcusable when this part of care isn't coordinated ahead of time. Plus there are always the people who try to wave it off, "Oh, it will be fine honey." Uh no. Nope. 

This is so frustrating.  Unless someone calls out sick, I don't really understand why they can't plan this better.  Like in your case....if you know a certain doctor needs to take care of a specific patient, put them at the beginning of the day, so you can predict the rotation!  It is medical care in a linear world. Things like scheduling can be predicted and arranged ahead of time. The right people just need to speak up at the right time. It is just getting this set ahead of time, that causes the trouble!

[gardenmom5]

one thing that helped us with needles was to make a "tent" - (by throwing a blanket over him), and allowing him to play a game/watch a video on a phone/tablet.  he'd stick his arm out.   we also had 1ds in there with him, to snuggle him and helped calm him.   the ND had him take GABA and theanine about an hour beforehand (they're calming.)

and a nice big thing of pop - or something else he'd drink to help hydrate and make his veins easier to find.

[Tap]

8 minutes ago, gardenmom5 said:

one thing that helped us with needles was to make a "tent" - (by throwing a blanket over him), and allowing him to play a game/watch a video on a phone/tablet.  he'd stick his arm out.   we also had 1ds in there with him, to snuggle him and helped calm him.   the ND had him take GABA and theanine about an hour beforehand (they're calming.)

and a nice big thing of pop - or something else he'd drink to help hydrate and make his veins easier to find.

This is one of her problems.....she has to fast before her blood tests. The dehydration makes it so much worse!  There have been times that they have to use her feet for blood draws because her hands/arms are so hard to find the veins. 😞

 

[Melissa in Australia]

HUGE HUGS

 We have PTSD and needles  with the twins. I don't think that people who haven't experienced this understand how absolutely awful it is. It isn't a child with a fear of needles, it is PTSD triggered by a needle. PTSD is awful not only for the child but awful for the carers as well. Secondary trauma for the carers  is a real thing. I really really hope that the Anesthetist works with you.

Just last week I was talking with  a Forensic Peadiatrician about PTSD and medical procedures. He said that at around the age or 13, whatever the IQ of the child, they seem to be able to understand because they have had one medical procedure that was not good that it doesn't necessarily mean  it will be bad the next time and their PTSD isn't triggered as much. I hope he is right.

We had some absolutely terrible medical thing  last week and the hospital had arranged for a Clown Doctor to be present. I am not into clowns and for me personally I found it annoying , but for the twins it was  marvelous. first they were terrified of the clown , but she had some obnoxious toy puppet dog thing that farted and made all sorts of body noises that completely shocked them ( in a fun way) and won them over.  When they look back to last week they don't remember the awful things they had to go through, rather they remember the clown doctor. It worked really well in diverting their mind from what was happening.  (this medical thing did not involve needles) 

 

 

[wintermom]

13 minutes ago, Medicmom2.0 said:

The problem is that anesthesiologists generally don’t review the patient and procedure until you get there. And many, many anesthesiologists don’t like using gas on morbidly obese patients. The sleep apnea risk and risk of aspiration is pretty high, and then they’re trying to emergently intubate someone with a difficult airway(morbid obesity tends to really make for difficult intubations)..  So likely your hospital only assigns cases the morning of and has no way of knowing. I’ve seen an anesthesiologist look at one patient and say yes, this is what we’ll do, and look at another patient with a similar profile and say no, I feel this is too risky. When I did my OR paramedic clinicals, none of the anesthesiologists would use gas on morbidly obese patients(they also wouldn’t let the paramedic or medical students intubate them, either).

Hopefully your anesthesiologist will look at her and decide it’s doable.  I honestly don’t have suggestions for the future, as it sounds like anesthesiologists aren’t assigned ahead of time.  And they’re picky because of the risk—an anesthesiologist may look at her on Monday and say gas is okay, and when you get there Wednesday he may see something that disturbs him and change his mind. I’ve seen that happen quite a bit, too. Anesthesiologists tend to be very risk averse.

When my ds was having his tonsillectomy, it was the anesthetist who did the pre-op visit with us. This was at a children's hospital with university and research institute linked to it, so very high standards of care for anyone, especially children.

To the OP, do you have access to a children's hospital or a teaching hospital? Perhaps they would be more sensitive to the issues of youth needing quality treatment with better communication among the medical professionals for each patient. Sounds like a bad case of no communication happening around you dd's situation, or perhaps a lack of beds or personel. I'm so sorry for the added stress that you and your dd are undergoing on top of the illness itself. 

Edited October 25, 2019 by wintermom

[StephanieZ]

I wonder if the place you're using doesn't have a pediatric anesthesiologist on that day. I'd ask if that's the issue, and if so (actually either way), I'd find an alternative facility that can/will assure there's an appropriate anesthesiologist committed to the procedure before doing the prep.

TBH, I'd be MamaBear having a FIT if my child, even w/o the added complexity of autism, went through colonoscopy prep and then was turned away from the procedure due to no fault of her/my own. NOT OK.

Edited October 25, 2019 by StephanieZ

[gardenmom5]

9 hours ago, Tap said:

This is one of her problems.....she has to fast before her blood tests. The dehydration makes it so much worse!  There have been times that they have to use her feet for blood draws because her hands/arms are so hard to find the veins. 😞

 

does that include water?

[Lanny]

Bad  situation for the patient in this  thread.  Here in Colombia, for elective surgery, it's mandatory to have an appointment with the Anesthesiologist, before the surgery, to talk with and examine the patient. The Anesthesiologist must sign off. In the case of the DD of the OP here, this isn't surgery, but a procedure that is somewhat uncomfortable (for a "normal" adult) and is unpleasant, but with her other issues, this becomes super complex.  I agree with the idea of a Children's hospital. I believe it will be necessary for the Anesthesiologist to meet with and examine the patient, before they will be qualified to make a decision and so that they will be able to consider ways to do this that minimize the risk to the life of the patient.  The decisions are for the Anesthesiologist to make.  As I write this, I suspect they are in the hospital, waiting to have this procedure done successfully this morning.

[Tap]

1 hour ago, gardenmom5 said:

does that include water?

Yep, She has to have no food for 12 hours prior and no water for 4 hours prior. We schedule for 1st thing in the morning so she hasn't had anything all night long. :0(

[Tap]

3 hours ago, wintermom said:

When my ds was having his tonsillectomy, it was the anesthetist who did the pre-op visit with us. This was at a children's hospital with university and research institute linked to it, so very high standards of care for anyone, especially children.

To the OP, do you have access to a children's hospital or a teaching hospital? Perhaps they would be more sensitive to the issues of youth needing quality treatment with better communication among the medical professionals for each patient. Sounds like a bad case of no communication happening around you dd's situation, or perhaps a lack of beds or personel. I'm so sorry for the added stress that you and your dd are undergoing on top of the illness itself. 

This is at Dorenbecher OHSU which is a pediatric teaching hospital. The benefit is that the person who called me is there to help with complicated children! But....the prior staff I talked to didn't really think through what I was saying or didn't actually verify that it wouldn't be a problem. Since I know her size and need for gas are a common complication, I tried to make certain that everyone knew ahead of time, but I think they just blew me off. When I go today, I will find out how to make sure this won't happen again. The girl who recognized the complication, is assigned to us and comes into the pre-op area to help families. She said she will talk to us this morning. She also said she would put an alert in her file for future procedures so hopefully when I call in the future, people will take me more seriously.

Edited October 25, 2019 by Tap

[Tap]

4 hours ago, Medicmom2.0 said:

The problem is that anesthesiologists generally don’t review the patient and procedure until you get there. And many, many anesthesiologists don’t like using gas on morbidly obese patients. The sleep apnea risk and risk of aspiration is pretty high, and then they’re trying to emergently intubate someone with a difficult airway(morbid obesity tends to really make for difficult intubations)..  So likely your hospital only assigns cases the morning of and has no way of knowing. I’ve seen an anesthesiologist look at one patient and say yes, this is what we’ll do, and look at another patient with a similar profile and say no, I feel this is too risky. When I did my OR paramedic clinicals, none of the anesthesiologists would use gas on morbidly obese patients(they also wouldn’t let the paramedic or medical students intubate them, either).

Hopefully your anesthesiologist will look at her and decide it’s doable.  I honestly don’t have suggestions for the future, as it sounds like anesthesiologists aren’t assigned ahead of time.  And they’re picky because of the risk—an anesthesiologist may look at her on Monday and say gas is okay, and when you get there Wednesday he may see something that disturbs him and change his mind. I’ve seen that happen quite a bit, too. Anesthesiologists tend to be very risk averse.

Yep! I agree with all you are saying!  The frustrating thing to me, is that when they have a complicated case, it would be nice if someone says "Hey, This is a complicated case, lets review it before they prep and get here." If one person has more experience and is comfortable with the risk, let them have this case. Or lets not schedule this  case if we are uncomfortable and put another game plan in place first.

[wintermom]

2 minutes ago, Tap said:

Yep! I agree with all you are saying!  The frustrating thing to me, is that when they have a complicated case, it would be nice if someone says "Hey, This is a complicated case, lets review it before they prep and get here." If one person has more experience and is comfortable with the risk, let them have this case. Or lets not schedule this  case if we are uncomfortable and put another game plan in place first.

All of this, especially when the procedure on the table requires so much preparation of the patient. This is not simply a "fast for 8 hours," but don't you also have to clean out the bowel a specific way? Maybe it's different with pediatric patients.

[Tap]

2 hours ago, StephanieZ said:

I wonder if the place you're using doesn't have a pediatric anesthesiologist on that day. I'd ask if that's the issue, and if so (actually either way), I'd find an alternative facility that can/will assure there's an appropriate anesthesiologist committed to the procedure before doing the prep.

TBH, I'd be MamaBear having a FIT if my child, even w/o the added complexity of autism, went through colonoscopy prep and then was turned away from the procedure due to no fault of her/my own. NOT OK.

This is at a pediatric teaching hospital. 😞

 

[Tap]

2 minutes ago, wintermom said:

All of this, especially when the procedure on the table requires so much preparation of the patient. This is not simply a "fast for 8 hours," but don't you also have to clean out the bowel a specific way? Maybe it's different with pediatric patients.

Yep, she has been on a liquid only diet for 24 hours and taken a gallon of nasty tasting liquid laxitive. 

[wintermom]

10 minutes ago, Tap said:

Yep, she has been on a liquid only diet for 24 hours and taken a gallon of nasty tasting liquid laxitive. 

Yup. Been there, done that. It's nasty enough when you are an adult and know exactly why you're doing it. In a sick child this is highly invasive. Shame on the hospital. Go right up to the CEO if they cancel on you. Your story need to be told and brought into the open.

[wintermom]

59 minutes ago, CuriousMomof3 said:

Here's the issue I would worry about.  As a parent, I don't want an anesthesiologist who has any reservations about their ability to manage my kid in a crisis, to say yes to a procedure.  The solution here, it seems to me, would have been for the team to identify anesthesiologist who does have specific expertise in intubating overweight pediatric patients, and feels confident doing so under emergency conditions, assigned to the case.  This probably means assigning her to one of the most experienced members of the anesthesiology team, and having an appointment with that person in advance.  

But, unfortunately, raising concerns at the hospital, which is the point that @Tap is at right now, runs the risk that instead of taking the steps above, the hospital would pressure someone who doesn't have the skills to handle the procedure despite their reservations.  That could end in disaster.  
 

OR the hospital could start flagging difficult cases, and work on training additional anesthetists so that there isn't pressure on one person to be constantly "on call."  At some point in time a hospital has to put in place back-up measures so that these kinds of cancellations don't happen often. Who better than the CEO? This exact thing just happened at my hospital, and now instead of departments or teams working in isolation, there is a plan to coordinate as a whole. 

[Ottakee]

4 hours ago, Tap said:

Yep, She has to have no food for 12 hours prior and no water for 4 hours prior. We schedule for 1st thing in the morning so she hasn't had anything all night long. :0(

Is this for the lithium?

[Ottakee]

This stuff is SO frustrating.

I went to ER last winter with my dd who needed stitches in her head.  I mentioned in triage we would NEED versed if this was to be done.  The ER doctor could be overheard in the hall saying that NO WAY was he going to sedate someone for stitches.  Well, after he met her and saw that I was RIGHT, the NP came in and ask me "how can we make this SAFE for EVERYONE?" .....and we got the versed and dd let the NP stitch her up with no problems....but she banned the ER doctor from the room.

Medical trauma is so real for these kids.

[Lanny]

Hindsight is often 20-20.  Looking back over this, it looks to me like the attending M.D. specialist, who if I dare to assume is an Internal Medicine - Gastroenterologist, if s/he understood the issues the DD of the OP has, would have flagged this case for some additional appointments, before scheduling the Colonoscopy.

Someone who has special problems should be  helped by qualified Professionals and that doesn't seem to have been the case here.

I am always thankful for, and deeply greatly to, the Anesthesiologists who have taken care of me and my family. My DW had surgery about 5 or 6 weeks ago that required General Anesthesia.  She looked so good, when they opened the door to the Surgical area for her to go home.  I was obviously very thankful for what the Surgeon did, but her life was in the hands of the Anesthesiologist.

I would not want anyone telling an Anesthesiologist they must take a patient or what procedure to use on the patient. The Anesthesiologist has the life of the patient in their hands. 

There should be a way, for  patients like the DD of the OP to get these things decided, before scheduling a procedure, whether it is a Colonoscopy or surgery.

 

[Terabith]

What wound up happening?

[Tap]

Thank you so much for the support and advice!!!!

The procedure was completed!!  Yay! The anesthesiologist did a great job! The whole team really rallied and made this all come together.

She  almost refused to go back to the OR. It took 20 minutes of me coaxing her and every mama skill I have to get her to leave my side. The OR team was standing at her door the whole time waiting for her. But from the time she agreed to be wheeled back to saying goodbye to me, was mere minutes since they were all very, very patiently waiting. 

They gave her a super high dose of laughing gas. Dental procedure max is usually 50% and he used 70% and let it run longer than they usually do. The child life specialist held an iPad for dd with youtube on it, about 12-18  inches from her face, so it was all she could really see.  They pulled in the nurse with the best IV skills, and they ended up using her foot for the IV. They had propafol ready to go. They got her groggy with the nitrous, distracted her visually with the iPad and had the nurse working at her feet for her IV (she is 5'10"). That made a huge difference since she  couldn't see when they had the needle ready to go in. I think they also used moving the blankets around as a distrantion/visual block of the nurse at the critical moments. The doc said they put the needle in and gave the med in almost one motion to get it working ASAP. LOL Gotta love people who are used to working with kids! They didn't want her to rip it out before she got the med in.  

She did it! We are so proud of her and her abilty to overcome leaving my side. She also now knows that they put the needle in while she was awake and barely felt it. This could be a HUGE step in her recovery!!!!!! YAY! This  is her birthday weekend so she already has special things planned, but I am going to do something extra special to mark the occasion too. 

The results are still coming  in. The visual scan shows no UC or Crohns, but he said her colon looked like that of a 60yo lady. We are going to wait for the biopsies and then start treating her for constipation, assuming that it could be the cause. I understand the idea of diahhrea going around constipation, but since she hasn't really had known issues in the past, it makes me wonder if that really is the case.   Lots more small details I won't bore you with, but just wanted to update with Great news! 

Thanks  for being there for the support and advice.

Love you all!

Tap

(btw my spell check no longer works, and I kinda suck at spelling so sorry for the errors!)

[Tap]

7 hours ago, Ottakee said:

Is this for the lithium?

When she was little it was due to lithium and other tests. But as she got older it was also for her blood glucose and one other test (I don't remember which). I know her prolactin test meant she had to have the test first think in the morning, so that was part of it. Since she was already npo due to sleeping overnight, her p-doc preferred a fasting blood glucose and cholesterol.  I finally got her p-doc to agree to A1c/cholesterol test without fasting (instead of glucose), so she only had to be npo for 4 hours prior on her last blood test. (npo due to sedation). 

[Tap]

3 minutes ago, CuriousMomof3 said:

Are you using sedation for each blood test?  

ETA: I am sorry, if I'm being too nosy!  We are dealing with medically triggered PTSD, although not with needles, and need to find a solution, so I'm curious what other people are doing.  

Yes, for the past few years. Since she isn't on litium anymore, she should have blood tests yearly, but we push it out to 18-24 months. Her past 3 blood tests have been done at the hospital with full sedation. Not prefered and has real risk factors. But we did the best we could and got them done. Her psychiatrist is the one who usually coordinates them, but last year when he was unavailable, her PCP ordered it for us. It is wayyy more complicated to order and requires a hospital willing/able to do it. 

[Tap]

4 minutes ago, CuriousMomof3 said:

I totally understand creative solutions.  Were they able to get some blood while she was out today so they can push the next one off, or is that wishful thinking on my part?

I asked for the doctor to order anything she needed, but since her last draw was a few months ago, I don't think he did. He speaks with a heavy accent so I have a hard time understanding and he was in a rush to leave. We piggy backed her last draw on a  CT scan for this same issue. LOL

[Melissa in Australia]

I am so relieved to hear it all went so well . Fabulous news

👏

 

[Ottakee]

Glad it went well.  It is awesome when you get a team that gets these kids.

[wintermom]

Fantastic news!!