Treatment Is A Partnership

If you’ve followed on facebook, you know of my experience at the urgent care facility. Nathaniel was having a pretty severe leg bleed, and our hemophilia doc decided he really needed multiple infusions over a couple of days. He received his first on Saturday. Once again, shout out to our dear friend Erin for her support that day.

Nathaniel is a hard stick, as far as IV’s go. The poor kid has been pricked and poked and punctured so much, that finding a vein that isn’t scarred or doesn’t collapse when they get the needle in is very difficult. This means that he usually needs to be poked multiple times in multiple veins before they get an IV that’s usable. Once he gets the IV, it’s usually a pretty quick process. It takes longer to find a vein and get him stuck than it does to give him the clotting factor.

So he gets the clotting factor on Saturday, which we were able to do at home (barely). The bleed didn’t get larger, but by Monday morning, it hadn’t shown any signs of reducing in size either, which is the indicator that the bleed has actually stopped. This isn’t unusual. Depending on the severity of the particular bleed, sometimes it takes multiple doses of the clotting factor to stop it.

By Monday, late afternoon, Lesley and the hemophilia treatment team decided another dose would be beneficial. By then, it was too late to get Nathaniel into the Hemophilia Treatment Center (HTC, for short), so she needed to take him to the urgent care at the Women’s and Children’s hospital. No problem.

She drives up. They admit him. It takes a few sticks, but they finally get the IV in a vein. They give him the clotting factor. Lesley and Nathaniel come home. It really should be that simple.

Tuesday, Lesley is in communication with the hemophilia treatment team. The bleed in his leg seems to be getting better, but not much progress, so they decide one more infusion. Once again, by the time they make the decision, it is too late to get him into the HTC, so back to the urgent care we go.

I called on my way, stating that the hemophilia doc wanted an IV run so that he could get another dose of the clotting factor. “We’re expecting you,” they said, “your wife called earlier saying you were bringing him.” Cool, this should go pretty easily.

We get there around 5:30. It took 4 sticks in 4 different veins, but on the 4th stick they got him in a vein in his ankle around 5:40. They taped it up. It was actually time for Nathaniel to receive one of his breathing treatments, so the urgent care doc took a listen to his lungs, agreed he needed one, and gave it to him. Wow. That was easy. We were waiting for them to come in and give him the factor. I mentioned to the nurse that Nathaniel has a history of digging out his IV’s, especially the ones in his feet and ankles, by rubbing his other foot against them until they come out. I told her that we needed to give him the clotting factor fairly quickly before he got it out.

“Oh,” she said, “it’s taped up too well. He won’t get it out.” That was at 6:00.

The doc came in to check on us. I told him that Nathaniel in the past has gotten his IV’s out by rubbing his feet together, and that we needed to get the clotting factor in quickly before he dug out the IV.

“He won’t dig it out,” the doc said, “it’s all taped up.” That was at 6:30.

Let me interrupt for a moment by describing Nathaniel’s desire to get his IV’s out of his skin. We went to the HTC when Nathaniel was having his thigh bleed. He was going to need multiple infusions for that one, so they decided to leave the IV in overnight. They taped all the way around his foot, where the IV was, then wrapped wash cloths around it, and taped those around it, as well. It was basically a cast on his leg.

The little bugger dug his feet together, kicked his leg like a horse, and dug his feet together some more, until sometime in the night while we were sleeping, he had gotten through the taped wash cloths, through the taped gauze, and through the tape around the IV, and dug the thing out of his foot.

He doesn’t like having IV’s in his body.

The doc at the urgent care told me he wasn’t particularly convinced that Nathaniel needed the factor, and that he wanted to confer with Dr. Gruner (the hemophilia doc) before giving it to him.

HE HAS THE IV!!! WHAT THE HELL?!!!

Let me explain: Giving clotting factor to a hemophiliac is not going to hurt him. As a matter of fact, if it isn’t needed to stop a bleed, then it actually works as a proactive preventative measure.

Give him the freakin’ factor so we can go home.

So we’ve been there an hour at this point with a needle in my boy’s ankle. The doc doesn’t want to give him the factor because he’s not sure it’s necessary. I wanted to ask the doctor how often he has to manage a hemophiliac’s healthcare, because I have to do it daily. While I know the doc has a heck of a lot of knowledge that I don’t have, this is one area where I think I may actually know more than the doc.

Another nurse comes in the room. Same exchange. Me: We need to do this quickly, blah, blah, blah. Nurse: He won’t dig it out, blah, blah, blah. This was at 7:20.

7:30, we’ve been there 2 hours, 1 hour and 50 minutes of which Nathaniel’s had a needle in his ankle. I had covered him with a blanket to keep him warm. He gives a nice hard kick and…

Blood everywhere.

I swore as I swung open the door, then I yelled down the hallway because there wasn’t anybody in sight, “He got his IV out and there’s blood all over everything.” Then I went back to Nathaniel and grabbed the blanket to hold pressure on the IV site to try stop the bleeding.

A nurse came running, one of the ones I had told earlier about him digging it out if we didn’t act quickly. Not an apology. Not an, “I’m an arrogant butthead who doesn’t listen to my patients.” Nothing. She goes to work cleaning him up as I continue to hold pressure on the IV site. The dose of clotting factor he had gotten the day before was apparently working, because after several long minutes of pressure, the bleeding at the IV site finally stopped.

They called back the nurse who had gotten the vein 2 hours ago. I told him I was pissed. I told him that I had warned them that he would dig it out if we didn’t give him the factor quickly. He didn’t really say anything.

3 more attempts at a vein somewhere on the little guy’s body, and on the 3rd try they got him in the hand. They got the IV in, gave him the factor, and told us we were ok to go home now. From when the nurse came in to stick him again to when they told us we could leave took about 15 minutes.

Unbelievable.

I work in the mental health/substance abuse side of health care. I know that there are many times that patients don’t know what they really need to make them better. That’s why we seek out health professionals. Sometimes, we don’t have the knowledge or the insight to know what really might be wrong with us or how to fix it.

But sometimes we do.

Treatment, all treatment whether it’s physical health, mental health, or substance abuse, all treatment is a cooperation between the one receiving treatment and the one providing treatment. That means we need to listen to each other. There is a real arrogance in the health treatment field among providers. Some providers believe that they have all of the answers and the patient needs to sit there and take what is given. This is a bunch of crap.

In Nathaniel’s case, we know what is wrong, and we know how to fix it. We just need someone to run an IV for us. Lesley and I have even been shown how to mix up the factor, get it into the syringe, and administer ourselves. We just need an IV to do it.

If they had listened to me last night, Nathaniel would not have been stuck an extra 3 times. Their arrogance cost Nathaniel the pain of being punctured again, and cost my family valuable time together.

We were warned that we would have to battle with medical personnel about what our son needs when we take him to seek medical help. I thought, “Oh, it can’t be that bad.” But it is. It’s frustrating. It’s painful (for Nathaniel especially, but for the rest of the family, as well, who are going through this with him.) And sometimes, it’s humiliating.

Being a provider of mental health/substance abuse services, I have resolved to be on constant guard against this arrogance in my own approach to my clients. Being a receiver of health services, I have resolved to confront it directly whenever I experience it from my providers, especially when it involves my children.