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.

The Cloud of Uncertainty

I've always been of the opinion that babies were easy. If a baby's upset, it's basically one of three things: either the diaper needs to be changed, the belly's hungry, or the kid is tired. Anytime the baby's upset, you address these three things in order, and you have what is basically a happy baby. Fevers and rashes are the exception, in which case you usually seek medical attention by calling your pediatrician. No big deal, a quick visit to the doctor, administer some meds, and bottaboom-bottabang, you're back to the basic three.

Nathaniel has been a whole other ball of wax.

For example, our latest stint in the hospital. We decided it would be easier to have Nathaniel receive his 4 month vaccinations while in the hospital. He was in the hospital due to the compromised condtion of his lungs. Jacob brought home a cold several weeks ago, and Nathaniel picked it up. We were pretty sure he was over the cold, but he continued to be congested. The congestion was getting worse and worse, and when we realized that his breathing would actually stop at night due to the congestion, we knew it was time to seek a greater level of medical care.

We took him to the pulmonologist who wanted to stress to us that he was not hospitalizing Nathaniel due to a failure of ours. No, he was hospitalizing Nathaniel because Nathaniel needed a greater level of care than we could provide, not because we had not provided the greatest level of care that we could.

So they did round the clock breathing treatments every two hours and gave him steroids (prednazone) through an IV. 2 days later he was back to the boy we knew. He was smiling, laughing, playing, and interacting, and most importantly, breathing like normal, or at least normal for him. We decided it would be easier to make sure Nathaniel got his 4 month vaccinations and a shot of Synagis (which protects from RSV) before he left the hospital. The resident physician declined to give him a shot of the blood clotting factor prior to giving him the 5 shots in his thighs. When we asked the doctor about giving clotting, the doctor responded that he didn't need it if he wasn't bleeding.

We went home Saturday night with what we thought was a healthy baby with a sore leg (due to the injections). His right leg started to swell. And swell. And swell.

By Sunday morning, the skin around his thigh was taut. Lesley called the hemophilia treatment center nurses, who told her that it was probably a reaction to the injections. Not to worry, they told us, it would go away in a couple of days.

That didn't feel right to us, but what do we know?

We called again later because nothing we did seemed to help or comfort him. Same response.

Lesley decided to go the ER. When she arrived at the ER, Nathaniel had calmed down (read "quit screaming") during the car ride from Jefferson City to the Women's and Children's hospital in Columbia. There were so many people in the ER waiting room that they were literally seeing people in the hallway. Rather than check him in, Lesley pulled a fast one. She called the hospital and asked to speak with the on-call pediatrician. She spoke via the phone and described the situation.

The pediatrician told Lesley that the swelling was a normal reaction in infants to the 4 month vaccinations. Not to worry, go home, if it doesn't get better in a couple of days, then you have something to worry about. Lesley came home, but it still didn't feel right.

But what do we know?

Monday morning, the swelling was worse. Lesley contacted the Hemophilia Treatment Center nurses and made arrangements to have Nathaniel seen at 11:00 am. I met her at the doctor's office. It was a brief examination. Muscle bleed in the right thigh causing severe swelling. Nathaniel was given an IV in the left foot, a shot of clotting factor, and had to have an ultrasound done in order to make sure that blood was flowing through the swolen part of his leg to the lower leg. The danger of prolonged swelling like Nathaniel was experiencing is a condition called compartment syndrome, which (simplistically put) is when the swelling causes compression damage to the nerves in the leg, which could lead to long term problems.

Well, the blood was still flowing, which rules out the possibility of compartment syndrome for now. The doctor wants to see Nathaniel again on Tuesday to make sure that his swelling has gone down and he is actually out of danger of compartment syndrome.

Put all that on the back burner for a minute.

There is a book that was written in the middle ages on contemplative prayer called "The Cloud of Unknowing." The basic idea of the book is that when we enter true contemplative prayer, we enter a space (for lack of a better word) in which "knowing" is impossible, and actually futile. It's pure experience of the presence of God. God overwhelms our senses so that we do not "know" anything anymore. All we are left with is an overhwelming sense of the presence of God.

That's where I'm at with Nathaniel and his illness and all the possibilities of things that could happen as a result of his hemophilia.

I have experienced a greater degree of self-doubt and uncertainty about what I've known as a father since the day I saw Jacob's little face when he was born. Everything I thought I knew about being a dad, and frankly has worked fairly well up to this point (judging by the feedback we get on how good our children are) is out the window.

Is Nathaniel's swelling a normal reaction to his 4 month injections, as the doctors and nurses (even the hemophilia specialists) told us? Or is it an internal bleed like my gut was telling me that could lead to serious, long-term physical problems?

Is Nathaniel fussy because he's colicky? Or is he bleeding somewhere in his body that I can't tell?

Is he drifting off to sleep because he's tired? Or because he's having a brain bleed?

Is Nathaniel's breathing getting worse because he's contracted a cold? Or is he suffocating on his fluids because he's bleeding into the lungs or as a residual effect of the injury to his lungs he suffered when he was just 2 days old?

I'm overwhelmed by how little I know, and I live in a constant state of fear that my child is going to die because I guessed wrong. I'm really, really scared of guessing wrong.

Terrified, actually.

I hate that old cliche that "God never gives us anything more than we can handle."

At this point, that ranks right up there with, "Everything happens for a reason." And if you want to know how I feel about that one, see my earlier post.

And don't go quoting to me 1 Corinthians 10:13 either. That doesn't say God won't give me anything I can't handle. It says that whatever God sends our way, he gives us a way out of it. And I know what that way out of it is:

It's Him.

In raising Nathaniel (and Jacob and Caitlin, despite my strong sense of self-sufficiency and delusional belief that I had this parenting thing figured out), I am completely and totally and utterly dependent on Him. That's all I'm left with in my "cloud of uncertainty": the experience of my own powerlessness, lack of knowledge, strength, wisdom. In my cloud of uncertainty where I do not know what is the right thing to do for my child TO KEEP HIM ALIVE, I can only depend completely on my God. I have no knowledge, no insight, no wisdom, nothing that I need to care for this child (or Jacob or Caitlin). I am naked in the cold and the dark with not even the vaguest sense of where the light is.

In my cloud of uncertainty, I have nothing except the experience of my utter dependence on God.

I am completely dependent on my God.

That's where I should have known I've always been in the first place.