First, we are home and all is well so far. This last hospital stay was not a good experience. Not that any of them are, really. But most of the time, even though the time is rough for her, it's balanced by good care, good nurses, and an overall feeling of knowing I have a bunch of good people on my side all helping me to make good decisions for Harlie.
But, this one was bad all-around. In every way.
Let me see if I can summarize it without using a gazillion words.
The time in the ER was fine. I showed them the photos that Terri took and sent to me via text. They definitely perked up and took things more seriously. They did an exam, and found nothing to note (meaning no visual source for the blood, nor any hard stool inside that could be causing a problem, either).
They took some x-rays and wanted to do that test for the
intussusception. For that, they had to take her to radiology and put a tube in her butt and pump air in her intestines. No intussusception.
Then they asked when she last ate, because they were going to admit her and try to do a scope in the morning.
The whole time we were in the ER (6 or 7 hours I'm guessing) a bunch of different people came in and asked me the same questions over and over again. Which meant I had to tell the story over and over again. Next time, I'm going to count the people so I can show you how exhausting it is. Especially when she has such a complicated history. I know the med students need to learn and the residents are doing whatever it is that they are supposed to be doing - but it gets old. Fast. Especially when you take in consideration how many times I've experienced this whole scenario in the last six years.
I really am the most patient person I know.
So, by the time we get to her bed (more on that in a minute), I have in my mind that they are going to scope her in the morning. They have already started the bowel prep to clean her out. To scope her - not to relieve any constipation due to anything they saw on the x-rays. Also, I never actually spoke to her GI doc (who just happened to be the attending GI doc at the time and was also IN the hospital at the time). All information was being relayed to him and back to me by middlemen - the docs in the ER. I found this to be slightly annoying, but they told me a plan, so I was okay with it.
Back to the bed for a sec, they put her in the PPCU (pediatric progressive care unit) which is a big room with beds separated by curtains. I remember when Harlie was six months old after we spent eight weeks in the PICU (pediatric intensive care unit - which was a private room with a private bathroom) and she was well enough to leave the PICU. My brother, Bruce, had visited when we were in the PICU. And then he came to visit when we were in the PPCU. He said that going from the PICU to the PPCU was like moving from a nice hotel to the bus station. I can still remember the look on his face when he walked in the room. I laugh every time I think about that.
Anyway, the night sucked, as most nights do when you're in the hospital. My sleeping space was terribly uncomfortable. But what do you expect from a bus station? When you can hear everyone cough, talk, their TV on some trash (that's not kid-friendly) and the lights are on for the nurses station, it makes for a yucky night. I think they were finally done messing with her by midnight. So, she finally fell asleep after that.
You can see that she's hiding her right arm under the covers. It's the one with the IV in it, so she hides it thinking people won't mess with it.
I woke up several times throughout the night, which is typical. There are a lot of noises and Harlie spent some time coughing. Luckily, we had a good nurse who was always quick to suction, so I didn't have to get up. That's the benefit of being in the PPCU vs. being in a private room on the floor (if you are trached, of course). Being on the floor, you have the highest patient to nurse ratio - so you get way less help from a nurse. And the nurse can't hear when she needs to be suctioned. So, from my perspective, being in the PPCU does have it's benefits.
Anyway, right before we went to bed, I spoke to a doctor who told me that the GI doc had a case early in the am, then had clinic at a different location. So, he may or may not be able to scope her in the am. Okay. Not sure what it means if he can't do it. But, I wasn't going to worry about it until it happened. So, whatever.
The GI doc came to see us around 7am I think. He came in and poked Harlie's belly and then I showed him the pictures I had. He raised his eyebrows and said, "Well that is active bleeding no doubt." Then he told me that "something could have popped" like a cyst or polyp. Or there could have been a tear in her colon. He asked the nurse how her bowel prep was going, and apparently she wasn't cleaned out enough. So, he left and told me nothing, really. All total, he was with us for two to three minutes, tops. I could tell he was in a rush, and I get it. But it's still hard when you want more information and you can tell their mind is elsewhere.
They upped her clean out stuff to be more aggressive. And we waited. I can't remember exactly when I was told that he would not be doing a scope. But, I expressed my reasons for wanting him to do it anyway. Again, we had to go through other doctors to communicate with the GI doc. So, this "conversation" took hours and hours. So, I would ask a question, and it would be an hour before I got an answer. I asked what his reason for not doing it was. And was told that based on the x-ray, it was most likely a tear.
Sorry, but this is going to get kind of gross - but there's no way to tell you without it. So, I said, what? If he is basing this on the x-ray, why'd you do the study for the intussusception? And what about "something popping, like a cyst or polyp?" Had he seen the x-rays before coming to see us?
At some point in the going back and forth, the doc doing the messaging changed. Ugh. Then I was told that there was hard stool when they did the exam in the ER. Um, NOT true. Not true at all! And if her colon was so full of stool that it tore (keep in mind that she displayed NO signs of being constipated, which I know her signs of very well) how'd you get air in her intestines? And I was there when they inserted and removed the tube. There was nothing in it's way. And definitely no hard stool.
So, I tell her that is not accurate information. Is this what he's basing his diagnosis on? Because if so, he needs to know it's not accurate! I need to know that he knows that she was displaying NO signs of constipation. I need to know what he knows so that I'm comfortable with what he's telling me.
At some point she returns and said that he said that he could fit Harlie in on Monday to do a scope. It's now Thursday late afternoon. And she's already been completely cleaned out. They told me earlier that he ordered repeat x-rays for 6AM (the NEXT morning), which meant she could not eat until after that. By 6am, it would have been 42 hours since she had any food.
So, he thought it was reasonable to ask Harlie to go 42 hours without eating (and that's if they did the x-rays when they are scheduled - and if you know hospital time - then you know you can't count on that), eat on Friday and Saturday, and then do another bowel prep for Monday. With another IV. And another bad experience at a hospital. All within four days' time.
And, if you want to think about it from her perspective a little more - she also just had outpatient surgery on Feb. 12, with an IV, and then had an ER trip in January, also with an IV. That's a lot of crap in a small amount of time. Especially for a girl who has been through so much.
All I'm doing is trying to lessen the negative experiences a little. I always try to combine procedures if I can. And that's really all I was doing. She was ready to be scoped. I saw no reason to make her go through all of it again in just a few days. At some point I said that we have enough unknowns to deal with - could they please just take this off my shoulders? And does the GI doc know that he's dealing with an A-typical patient? She rarely does what's expected.
So, I said all that (and more) to the doc. I told her this was not patient centered care - because they were not thinking of Harlie and her overall well-being. And I also said I didn't think he was being a thorough physician.
The problem with this whole situation is that the communication between patient (via me) and doctor was awful. Dealing with a middle man all the time leads to way more room for error. And I cannot possibly have any confidence in what's being said to me when I don't know what's been said to him.
For example, the next time I saw the resident, I asked her if she told him that I said I didn't think he was being a thorough physician. She said she did not. So what else did she not tell him? Did she tell him that the info about the rectal exam wasn't accurate?
Ugh.
So, the bottom line is that I could not possibly have any confidence in anything that was said when it was said back and forth.
And the only option I was given was to bring her back on Monday. Which, I don't even consider an option, really, because I just don't think that's right to do to her. So, knowing that, why didn't he offer a regular appointment, so he could answer all of my questions?
Was he making the decision about the scope based on Harlie (and the inaccurate info) or based on his availability to do it? At some point I was told that anesthesia wouldn't do it unless it was an emergency. But shouldn't her doctor advocate for her that it was in her best interest to do it then?
And why the hell couldn't he just call me himself? FIVE minutes is all I would have needed with him to leave that hospital in a completely different mindset.
We just didn't matter enough. And with a girl like Harlie and her complexities - that's a VERY scary feeling. I instantly felt very alone in her care and without any good direction as to what to do next. So much for having a good team on my side to help me make good decisions for her. So, if it happens again, what do I do? Where do I take her? Back there? What if he's busy and doesn't have time to come see her and talk to me again? I just don't think I could take that chance. So, I guess I would have to put her in the car and drive to DC.
Isn't that just awful? And here, locally, they are calling the pediatric division of MCV, Children's Hospital of Richmond. Crap. How can you call yourself a children's hospital when a parent can't even talk to the doctor?
And I love MCV. It is, by far, the best care for our children in our area. Well, that's my opinion anyway. I've really liked all her docs so far. But, clearly, there's a shortage in the GI area.
So, after I had reached my breaking point, I told the resident that either they were going to scope her during this stay (not picky on when, even) or they were going to do the repeat x-rays tonight (she was completely clean by this point) and discharge us.
So, they did the x-rays (all good, I was told) and we left. The doc that was in charge of the PPCU came to talk to me. I guess he heard that I was upset. I wasn't yelling or anything. So, I told him some of the basics (by now I was so over all of this). I got my phone, pulled up the photo of the blood clots and showed it to him and said, "If you had this come out of your butt wouldn't you want a colonoscopy?" He had to laugh a little and he said, yes.
I will say that he was the only one that really seemed to care. After we left, he called me on my cell and told me that he called the GI doc himself to see if he could get more info. It doesn't really matter what he thinks though, because I don't know if he knows everything.
The bottom line is that what he thinks happened (tear in her bowel) makes NO sense to me. That doesn't mean I think he's wrong - I just don't understand it. And usually, if I don't understand it, something's not right. And I still have questions. Oh, and to make things worse, the GI doc didn't tell me when to restart her aspirin. Again, not very thorough if you ask me. I guess I'll have to restart it based on my medical school knowledge. Oh, yea, I didn't go to med school. Grrrr!
So, after having calmed down a bit (although I still think I'm right that he should have cared enough to call me at least) now I have to come up with a plan. If he is right and that is what happened, then I have to know how to prevent it - especially when I thought we were doing everything right. So, something's going to have to change. But what? I still need guidance. I can't do this alone.
If he's wrong, then I have to know what to look for and I have to know what I'll do. Either way, I need some time in front of a GI doc. I think if nothing else, I have to have my questions answered.
As I said earlier, a follow-up appointment wasn't offered. And I couldn't see him anyway. I already think he doesn't care that much about his patients. Don't think I could get that out of my mind.
So, I have to find another GI doc at MCV or I have to go see one in DC. I haven't yet made up my mind. Even seeing another doc at MCV doesn't guarantee I won't be in the same situation again (if it happens again, he could still be the one "in-charge" when I brought her in). I have to assume that if it happened again, they would look further than the first time. But, you know what they say about assuming....
I told the last doc (the one that seemed to care) that I'm not ever like this. I have never left a hospital this upset and disappointed before. And I've left a hospital hundreds of times in the last six years. He doesn't know me at all - and to him I could have been some crazy mom that is never happy. But, that is so not the case! I really don't think actually speaking to the GI doc in person was too much to ask. And if it is, then something has to change if you want to be a successful children's hospital.
Oh, and another thing, when I was talking to that doc that seemed to care, the nurse and Tom were with Harlie, removing her IV. Harlie was crying and thrashing and fighting. I pointed to her and said, "He wants me to do this to her again? Look at her? Do you think that's patient centered care?"
Ugh. I really am exhausted. Fighting for her like I did was the hardest I have ever had to fight for her. Ridiculous.
I couldn't get her in the car fast enough. We got home, I gave her a bath and put her to bed. By this point, it was around 10pm or so. I haven't been able to tell you about the headboard Tom and my niece made for Harlie. Tom made it and then Maggie painted it.... what do you think?
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| My exhausted little love. |
It felt so good to be able to tuck her in her bed. She knows she's loved. I just hope she's loved enough to make up for all the crap she has to deal with.
I know I did my best for her. Even though I didn't get what I wanted. I tried. Now I have to re-group and get her a doc I trust. I am so thankful for the docs that take their time with me. I hope they know how important trust is and how comforting it is to know I feel it with them.
Okay, well this turned out to be longer than I wanted it to be. But so was the hospitalization. For the record - had he thought that about her x-rays to begin with, I could have done a clean out at home, and saved a bunch of time, money and aggravation on all our parts.
But what do I know?
Thank you so much for all your support and offers to help us in any way you could. Seriously, I would not be as mentally stable as I am without your support! ;-) We are so lucky to have such wonderful people in our lives!
Much love,
Christy xo
