Almost a month ago I talked about the lessons you learn from your kids. How strong they are. How resilient. S is definitely a tough cookie.
I have to write down this story because I want to remember it in a few years. I want to remember the way I broke down when I was in the waiting room. Remember the way that S cried but ultimately conquered her IV. How she was brave through the entire procedure. I also don’t feel too bad writing about the husband since he doesn’t read this blog.
We have been to the doctor, gotten the blood tests, the stool tests. Completed the barium x-ray (which was absolutely no fun – the forced disgusting drink, the bar they press and roll around her tummy to force it through her intestines). We did the follow-up. We agonized over which path to take. With the suggestion of her Dr, we decided on the Endoscopy.
Which was the right path? Go slow and follow what the blood tests are saying (nothing wrong? It’s not Crohn’s disease?) or go fast and do all the tests at once? We were convinced through logic to do the Endoscopy first (and alone!) because while the x-ray showed possible inflammation near the ileocecal valve, the rate of false-positive on the x-ray is high. The blood tests were all normal and the latest tests can detected IBD and they were not detected.
So we get up at 6:30am, hop in the car, and arrive at CHOC. At night it looks beautiful.
We wait and wait. Sign papers. Gasp at the cost. Hope insurance will cover most of it. Walk in back to go to our patient room.
The nurses are absolutely lovely. There was over 10 of them and I was getting confused quickly. They kept introducing themselves, saying hi, and then leaving. They made sure to explain everything.
While I knew that S was getting versed to calm her and propofol to put her into twilight sleep, it seemed rather casual when it was explained the week before. I thought it would be a little cup she would sip. I didn’t really consider that they would be doing an IV, that the anesthesiologist would be there.
They were giving us options on if we wanted S to have the versed. At that point, S piped up with ‘you will be holding my hand through the whole thing right, Mama & Papa?’. At which point I looked at the nurse and smiled and said, ‘We might have a little problem here.’ She marked on the chart a YES for versed.
Two of the cute nurses came in and started explaining how the IV would work. They do this shot of air/numbing solution that was really cool. A drop of blood shows on her skin though and S started freaking out. I was standing by her head, the second nurse sitting next to her holding an iPad with games, and my husband was sitting down next to me. As we were going through it, I looked down a few times and saw his elbows on his knees and him looking upset.
As I was in the middle of calming S, holding her down a bit, I didn’t think much of it. S has my little veins so it was hard to find them and that completely sucks. After they get the IV in, they are adjusting it and I look again to the husband and he looks bad.
I go to sit down next to him and he leans against me and puts his hand on my leg. He starts squeezing his hand on my leg repeatedly. Since S was still alternating between freaking out and playing with the iPad that the nurse was holding up for her, I thought he was just upset. He proceeded to lean against me and put his head behind my back but in-between the chair.
I thought that was weird. Is he crying? Maybe he just doesn’t want to show S that he was upset. His squeezes on my knee were more emphatic.
He leaned back up and I looked over at him. He was gone. He was sitting up but he was not there. I put my hand around his neck to keep him steady realizing that he had passed out from watching the IV. My lovely husband can not deal with needles. When I had my epidural, he did the same thing. (Which I was understandably upset at the time, as well! “You are passing out and I’m the one having the baby?”)
S is sitting on the bed looking at her Papa. “What’s wrong with Papa?” she asks.
“Nothing, sweetie. Papa just doesn’t like needles, you know that.” I say with a confident smile as I’m holding up his head. The nurse ran and got me a wet paper towel. At the same time, she was adjusting S’s IV, and doing what she was supposed to be doing to my daughter.
I desperately ask the nurse for something to drink for him, while I say loudly, “Are you okay?”
The nurse brings a small OJ container. I open it and say sternly, “Honey, I need you to drink this.” I send a quick smile over to Sam. She alternates between gaping at her Papa and playing a game on her iPad.
His eyes are blank. There is no one behind those eyes. He is swaying in his chair, as I’m holding on to his neck to keep him steady. His right arm jerks up and bumps into the open container of juice, almost spilling it on his clothes. I move it away quickly. His arm falls down and he sways his body toward mine and starts moaning over and over again.
S looks over again and freaks out more. “What’s wrong with him? What is he doing?”
I reassure her again, and laugh out loud. “He’s fine, he just fainted.” I turn my eyes over to the nurse and make crazy eyes at her.
I have no idea what to do. My daughter needs me to be calm. My husband is behaving like a stroke victim. This is not happening to me.
The nurse called out to get a gurney for him. She wrapped his finger and got a read on his pulse on the machine that should have been dedicated to my daughter. His pulse appeared on the screen and she reassured me it was normal.
All three of us, the two nurses and I, continue to reassure S that everything is okay. This happens to Dad’s all the time and it’s no big deal. I continue to hold up the husband, while he is moaning. I keep trying to speak sharply to him, in the hopes my voice will make him snap out of it. The whole thing was over five minutes long.
Suddenly, he does register my voice. The light comes back into his eyes, that wonderful spark of intelligence, and I can tell that he’s hearing me. The sweat is rolling off his body and he accepts the glass of juice. The gurney is cancelled. He reassures S that he’s fine. She admonishes him that he shouldn’t be around needles anymore. He laughs.
The new Dr who is performing the procedure walks in. He proceeds to question all of our choices, question her diet, query why we aren’t doing the colonoscopy and endoscopy at the same time, and basically freak me out more. Why aren’t we doing that? Well, our main doctor has a different style and we went with her recommendation. I asked her to do both at the same time. Why didn’t I fight harder for that? But the blood tests were all negative. My Mom doubt is killing me. Was it the right decision? At this point, we feel like he’s going to find nothing.
S gets her shot of versed through the IV and the light in her eyes goes dim. She makes us promise that we will hold her hand the entire time. We tell her that we love her. She grabs our hands and asks us to hold her hand as they continue wheeling her into surgery while we are ushered back in to the waiting room. I’m going to be strong.
We sit down and the husband laughs at himself passing out. I listen to him and think to myself, yes, that was traumatic for him. Don’t make it all about you. I last about two minutes before I break in and explain just HOW. EMOTIONAL. that was for me to have to smile at my daughter while I don’t know what my husband is doing since he was out for five minutes. I break into tears. Usually at these things, I hold it in until it’s all done. It’s out now and maybe that’s better.
Twenty minutes goes by. We watch the video screen where it shows her surgery and when she goes into recovery. The Dr comes out. Everything looked healthy. He took biopsies. There was a spot that might look like something, he is checking it out.
He proceeds to lecture us about diet. An 8 year old should be getting 16 grams of fiber a day. I try not to laugh at him as I tell him she gets over 30 grams. I don’t think he believes me. He talks about motility clinics. With-holding could definitely be a problem, we agree, but the pain she has had in the last six weeks is different than what we have been dealing with (constipation) for the last eight years. He lectures about diet, motility, but agrees we are right in moving to the MRI. He repeats that he simply has a different style than our main Dr.
We leave feeling torn. Do we start seeing the new Dr who seemed very educated? Do we stay with our current Dr for now? Even though she is moving back East in five weeks?
The questions will never end.
I also haven’t even gotten into how she woke up from her twilight sleep screaming about apples and ba-nay-nays, demanding to see the Dr, and being an angry 8yo. I don’t want to see her experimental drunk nights in her teenage years cause I think she’s gonna be interesting…
Beyond this story, the biopsies are not in yet but we decided to forgo the antibiotics for SIBO since it was not proven (taking the new Dr’s advice) and move straight to the MR Enterography. It took a lot of calling, texting, listening to automated phone trees, but we have it scheduled this week. Bright and early again.
I have to wait for the pre-op to call me so I can ask questions but reading online, I’m worried we will have to do another IV. She definitely has to drink something again, which sucks. She also has to go into the tube and not be with us.
Seeing as though she keeps making us promise to hold her hand the whole time… this is definitely going to destroy me soon.