Ranting is a great way to release frustration…

My daughter Alex was released from the hospital late Christmas afternoon, so she’s been home a little more than a day. She is adjusting to her new reality, as are we all. Other than the trauma of every injection, I think she is taking it better than my wife and I are. Of course, if the last week had been handled better, although the transition would still have been difficult, perhaps we might have had things slightly easier. I’m not ready to rant about the diabetes itself, so instead I’ll rant about her hospital stay.

Of course the hospital stay was rough, but so many things were missing that I want to get a least some of them out of my system.

First, the ER was very hard on all of us. Alex was diagnosed by her primary care physician, so instead of going back to school Alex found herself in the ER. She was dehydrated, so it took a few tries (over nearly an hour) to get an IV into her. The child life assistant tried very hard to distract her, but overall it was pretty awful. Each new person would come in saying they were the final word in IVs and would get a line in, try for a bit, and end up calling someone else up the food chain to have them give it a try. Alex lost faith in new faces quickly.

By early afternoon we were moved up to the ICU. That also could have been better. She needed multiple IVs, so again we had multiple people try to get one in (although it took fewer people and fewer tries than the ER). They eventually had to sedate her to get the second line going.

A few things bothered me about the IVs. She had one in her right hand where she was being medicated (saline, potassium, glucose, insulin, and others – at one point she had 5 separate bags on the line). She had another in her right arm at about the elbow, which they were using for blood draws, although eventually they moved the line there when they stopped drawing blood so often.

What bothered me first was that once they added glucose to the mix, they couldn’t understand why her  blood sugar shot up from where we had dropped to the high 200s, beyond the high 300s she was admitted with, to over the 550 the blood sugar meter was able to read. The ER nurse and the endocrinologist who stopped by were both stumped. They tried 2 different meters, and eventually sent her blood out to the lab. I had to point out to them that they were drawing blood in the same arm where they were introducing glucose. Oh. They started using finger pokes on the other arm, and got a reading in the 150s. This really made Alex mad because she allowed them to put in another IV specifically for blood draws (because she was so afraid of the finger pokes, and she needed 4 per hour). So, now she got a second IV, and still had the finger pokes. Another loss of credibility in her mind. (And mine too – because again, I’m not the medical professional, but the issue seemed pretty obvious).

The second IV issue I only heard about, but never saw. After about a day, once Alex was stabilized, the bags were moved to the arm IV, and when they needed blood, they would disconnect, flush, wait a bit, and draw blood from the IV. All is fine and dandy , except one of the nurses would take the blood she needed, and push what was left in the draw back into her arm. Back into her arm? What? Anyone ever heard of a blood clot?

The last IV issue was that even though she eventually came off the drip, they didn’t remove her IV until discharge – that’s 6 days. They didn’t even flush it the last two. No one wanted to deal with the terrified screaming child until it fell to the nurse who was there for our discharge (who fortunately was fantastic).

Finally we moved to the diabetes ward, and although things were not as traumatic, we did still have issues. First, everyone thought someone else was taking care of things, so everything got missed. In ICU we were told that we would meet with child life and a psychologist to have the discussion about what diabetes was, and how she would need shots every day (see previous post about needle phobia). That never happened. She found about because the diabetes nurses discussed it in front of her. She cried for a long time. In fact, we almost never saw the child life team again, as they were all working on the Christmas toy drive. I realize that’s a big thing, but should it come before patient care?

Since things were not getting better, we asked for a psych consult. We met with a psychiatrist, who after a 90 second evaluation recommended prozac. For a 9 year old? Really? His reply was how useful it was, so my rebuttal was that our first attempt to address her terror and dispair would be to set a 9 year old girl up for an SSRI discontinuation syndrome? He left shortly after that.

We did have a nutritionist come in, who was very nice, but other than a very nice lady on the diabetes team who let Terri try shots out on her, we didn’t see many people but the nurses. The nurses each had a different theory about diabetic care, so we got conflicting advice. The nurses (because they each thought the previous 12 hour shift was taking care of things) would never check or empty Alex’s hat (we were collecting urine for output measurement and ketone testing) until we asked. The nurses never changed her sheets in the entire stay, despite them getting covered in blood spots. The nurses left me with a girl who had a nosebleed so bad we went through an entire box of tissues in 25 minutes (I had the call light on) and I kept ducking out to find someone and never could (eventually they were back chatting at the nurses station around the time I ran completely out of paper products). One nurse was so nervous that their shaking hands and sharp intake of breath caused Terri to drop the syringe the first time she tried to give Alex insulin. (Terri had to go home for most of a day to get her confidence back).

I don’t blame them entirely, and we did have 2 fantastic nurses during our stay. The process was what was bad. There is a “newly diagnosed diabetic” kit. They were out, we never got it. We spent nearly $400 on her prescriptions in the hospital pharmacy – when we got back to the room, we saw they forgot the syringes that we paid for. When we went back, they were closed 3 days for the holiday. There is an education and counseling process. We only got a couple pieces of it because some people were working on the Christmas activities, and others were out for the holidays. As my wife and I were both basket cases, I know I would have thought twice about entrusting Alex’s care to us after the 6 days in the hospital.

On the flip side, Alex’s primary care physician came by 3 times during her stay. You may not be aware that you can’t do that anymore. There are PCPs and hospitalists. We told the nurse who was discharging us (because she asked when our PCP followup was), and she was flabbergasted and said she had never heard of that.

Despite it all, we’re making progress. Alex was home for Christmas. We’ve bought our first round of carb countable groceries, and we’re managing her blood sugar. We hope to have Alex (and probably us) set up with a therapist shortly after new years.

But it’s still hard.

5 thoughts on “Ranting is a great way to release frustration…

  1. Writing is an extremely powerful tool for release. Have you thought of this option for Alex? Perhaps, she might like to blog about her experience. It doesn’t have to be a perfect blog, and the posts don’t have to be long either, but it might give her the opportunity to release her frustrations about her newly changing life, her frustrations, and to discuss what she learns about the disease, and how she copes with it. Perhaps her writing might even help others in the future as well.

    Just a thought.

  2. Wow I am so sorry to hear of this experience. I am glad she is back home and am sure she feels some kind of security again being out of the hospital and back home with mom and dad. Although I am sure this will be a huge transition it sounds like you are taking all the right steps to make it easier. She has great parents :).

  3. I’m sorry that you had such a horrible experience at the hospital. They had a hard time with my sons IV’s also. It was very painful for him. When we got home he had bruises for two weeks because it was so difficult to get the IV’s in. I think that the IV issues were honestly from the dehydration. As far as the rest of the issues you had… I am appalled that you, your family, and your daughter were treated so badly just because it was the Christmas season. Your childs health is their priority and their job. We had several classes for 3 days straight, many doctors came in to see my son, and lots of caring eduacated nurses all attending to Logan. We even received phone calls from the hospital to seehow Logan was handling things at home. They gave us a phone number we used to call with questions, concerns, help in general, and support.
    If I were you I would be complaining to the Dean of Medicine. They need to realize that just because it is the Christmas season does not give them any sort of slack in caring for the patients that have put their trust in them.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s