par for the course

We had our first family trip to the ER on Sunday. Iris has been complaining of intermittent belly pain (always located in the center of the belly or sometimes on the upper right side) for around a month, possibly longer. On Sunday, she vomited three times in the morning, had loose stools and a fever. Maybe it was a stomach bug, but what would explain the intermittent belly pain going on for so long? I've run out of ways to explain it away.

At the ER we started with the least invasive tests. Pushing on her belly in various places showed that nothing was tender to the touch, making the doctors think the appendix was not the issue. We then moved to an x-ray of her belly, which showed a lot of gas and backed up stool. She was a little scared about the pictures but by the last one she said "cheese" and was watching "Daniel Tiger" the whole time (which, by the way, is a great show that teaches kids so much about emotional regulation, adapting to new situations - like new siblings - and teaches parents how to be calm and to diffuse temper tantrums). Then we did an ultrasound to look at her gallbladder and gallstone. Her gallstone doesn't appear to be bigger than when we first discovered it (maybe about a year ago?) and her gallbladder didn't appear to be inflamed or show any backup.

I keep thinking it has to be her gallstone that is causing her pain, or just the gallbladder. It seems like most of the other people with her condition have gallbladder problems, but only a couple of them have had it removed. It's also possible that she has urinary reflux. I'm not sure how that is diagnosed but we know she doesn't have a UTI. (I got her to pee in a cup, which I consider a minor miracle, even though she then resisted going potty for the rest of the time we were at the ER because she was afraid she would have to pee in a cup again and she didn't want to do that.)

Finally we agreed to do some blood work even though I had told Iris we wouldn't do any shots (which remains true - technically, we didn't do shots). This was truly traumatic for her. I hated to have to hold her while they poked her for the blood. Thankfully the medical team called the best nurse they had to do the draw and she got it on the first poke. Previous experience has shown us that it's very difficult to get into Iris's veins.

The blood work all came back normal: no problems with liver function, no elevated white blood cell count. I'm not sure what else they tested, but they said everything looked normal. We gave her Tylenol for her fever and finally went home.

We spent around 12 hours in the ER - from 3pm to 3am. Sibyl was with us and did a good job of being quiet, though both Evan and I wanted to have all our attention on Iris while we were there.

I thought a lot about this reality that we've brought Sibyl into while I was pregnant and while considering whether we'd have a second child. I wish our reality were different, that our baseline didn't involve regular interaction with a battery of medical specialists and that we didn't have more knowledge about Iris's medical condition than most doctors we come into contact with. But spending time wishing for things to be different doesn't help anything, really. It certainly doesn't help us to cope.

Next time I'll plan not to bring Sibyl with us to the ER. I can hardly believe I decided to do it this time. She was barely 10 weeks old and surrounded by germs. I asked one of the nurses about whether they had seen mumps there recently (Denver is having an outbreak). She said they hadn't seen it much. Maybe she was just saying that to make me feel better about bringing  a healthy newborn to the ER. Mom-guilt is the best.

Iris was supposed to have an MRI today (Tuesday), but we've had to reschedule it now three times I think because Iris has been sick. The first time was because she had vomited the previous night and I didn't want her to be dehydrated going into the procedure. The second time was because she had had a fever a few days prior, same with this time. You are supposed to have at least 3 weeks of being healthy (no fever/inflammation). So we're now going to try for April. I'll probably leave Sibyl at home or have someone come with us who can watch Sibyl while we attend to Iris. 

hosptial vacation

I went home the other day to get some more supplies for our hospital stay. We just completed a full week at the hospital with Iris. It was strange to walk into the house and see everything as we had left it last Saturday evening. We were in the middle of some big organizing projects when we decided we needed to take Iris to the emergency room. Those projects are still in midstream a full week later.

We took our time getting ready for the ER visit and even packed some extra supplies under the assumption that we would be staying in the ER over night (but not a whole week). Iris had had a bad cold and cough starting Monday but it was far worse on Saturday, when we couldn't keep her oxygen levels up and she was needing more than 1LPM of oxygen to get close. She also had a fever of 103 degrees (Fahrenheit), which we didn't catch at home.
 
Turns out she had two respiratory viral infections that have completely sidelined us. Rhinovirus (the common cold) and human metapneumovirus (hMPV). The more nasty of them is the hMPV, which can cause increased oxygen needs even in perfectly healthy children. She is taking a long time to recover, which is expected with ACTA2 r179 kids. This may be because she has a harder time getting secretions up and out of her lungs because her airways are floppier than typical kids.

Iris has basically been in good spirits the entire time we've been here, though that has fluctuated with her fever. Tylenol helped immensely. This video is from our second night in the ICU. Iris is giving us her version of, "Tom, Tom, The Piper's Son."

Evan and I have been with Iris the whole week. Evan has worked from her hospital room and I have taken sick leave and sloughed off a few time sensitive projects to a co-worker. I did go to work briefly on Friday, and Alyssia and Ky came to help out.

We requested a big bed for her when we got to the ICU, mostly because she wouldn't let me put her in the crib they had for her. So we had to sign a waiver saying we wouldn't leave her by herself in the bed since she was too young to be trusted in a big bed by herself. The advantage of this is that we have a an adult-size twin bed and can "sleep" right next to her. We have also been able to get a sleep room the past three nights, and we've been taking sleeping shifts.

Father's Day in the ICU

The plan of care has involved breathing treatments and suctioning (every four hours) to get the secretions out of her lungs. She hates these, but endures them when she's on Mommy's or Daddy's lap. As soon as two nurses walk in she starts saying, "No boogies!" She has definitely gotten used to the treatments and just yesterday started reenacting them on Buddy Bear. She would say over and over, "Okay, your turn, Buddy Bear.... [pause]....my turn, Buddy Bear...."

"Your turn, Buddy Bear."

"My turn, Buddy Bear."

Her treatments have gotten easier over time, also, because they're actually succeeding in getting everything out. So we don't have to do the deep suction anymore -- the most painful of the four treatments. Overall, the pats on the chest with the CPT cup are fine, the 5-minute breathing mask is also not awful. The nasal aspirator is stronger than our NoseFrida, and involves more saline.

It was a big step forward when we took out her IV, which had been on her left arm, making her left thumb unavailable for sucking. She couldn't suck her thumb for the first few days and so I would hold her hand as she fell asleep. She would ask for her pacifier, which she would just hold in the other hand. Finally, when we took the IV out, she didn't use her left hand, which was worrying. It took probably a full 24 hours before she found her thumb again. Now she will occasionally say, "We took the IV out!"

The "no-no" kept her from moving her IV arm.

It's been a roller coaster ride this week. Iris went from being on "heated high flow" oxygen in the ICU down to "wall oxygen," then back on "heated high flow." Heated high flow separates the amount of air getting pushed into her lungs (the flow) and the level of oxygen mix. So at her highest she was on 8LPM of flow and 80% oxygen. At home (or what they call "wall oxygen" at the hospital), she is on 100% oxygen and the flow can vary up to 4LPM. She'll never get up to 4LPM at home because we are supposed to bring her in to be seen if we have to go over 1LPM.

When she is on the heated high flow she has to stay in bed (or very close to it) because the tubing is so short. On the longer tube she gets to run around and look out the window, which is exactly what she did the first night out of the ICU. There were heavy storms during the week and that night she got to see her first rainbow. [I don't have a photo of the rainbow, but I'll post a photo of her at the window soon.]

Dancing next to bed (on heated high flow)

Shortly after that we had to go back on heated high flow and pump her with Tylenol to fight the fever. The fever dissipated mid-week, around the time we gave her a dose of Decadron, but she stayed on heated high flow.

Yesterday (Saturday), though, was a big step forward. She got off the heated high flow again and over night made it down to 1LPM on the wall oxygen! That is close to what she would have to be at to let us go home. I'm looking forward to rounds this morning to hear their thoughts.

She has started a twice daily course of Flovent, which we will keep her on for the foreseeable future. This seems to be not at all uncommon for other ACTA2 r179 kids so we feel fine about taking this course of action, especially since she does occasionally have increased work of breathing at home, even when perfectly healthy. This is something we had tried hard to avoid, but now seems like an obvious next step. And it's not necessarily something that will be a lifetime medication (like the aspirin and losartan).

A big "thank you" to everyone who has visited us, sent us books, toys, and food. I am pretty sure I've gained at least five pounds given all the food and lack of exercise. I did finally get a walk yesterday afternoon after Evan went home briefly for more supplies (and brought me my walking shoes). The visits and toys/books have really helped pass the time. I'm still not sure how we would have survived without the two TV shows -- Bubble Guppies and Curious George. Let's all hope we get out of here in a day or two, max.

laughing in the emergency room

Iris was having trouble breathing yesterday so my mom and I brought her to the emergency room just after 5pm. I called them on the way to let them know we were coming. I don't know if that helps things move faster but it couldn't have hurt. We've never had to wait the two times we've been in the emergency room but it probably is because she is a cardiac baby.

The short of it is that the steroids seem not to have worked and that it appears she still needs her Lasix to get rid of fluid in her lungs. In other words, she may not have had any inflammation in the first place and all she needed was to up the lasix dose since she's been gaining weight. The question then becomes - why does she still have fluid in her lungs? Unknown.

We got discharged from the emergency room around 11pm, maybe a bit earlier. I started out wanting very much to go home right away but at one point they talked me in to staying over night because she apparantly needed more oxygen [see below]. Evan drove down to meet us and helped re-convince me that there was no need to stay over night.

A big baby milestone was that Iris laughed for us while we were there. She has been laughing in her sleep but not while awake. Waking laughs are a new treat.

Now then, on to the oxygen story. I have become increasingly unimpressed with the medical folks we're dealing with. That's not to say that I am not sympathetic to the very real human aspect of practicing medicine. As a mother, though, it's infuriating when you think you are doing the best thing for your child only to find out that you have not been told the whole story. It's a problem of asymmetrical information combined with inconsistent care from the millions of nurses and doctors who see Iris. I could go on bu I'll get to the point.

When we arrived and were checked in, I confirmed that Iris was on 1/2 L of oxygen as directed by the pulmanology team at our Friday appointment. As far as I knew they left her on 1/2L when we were sent to the room. So imagine my surprise when the fellow came in to relay the message that they were concerned that she needed a full liter of oxygen to keep her sats [saturation levels] up. No one told me they had changed her oxygen flow at any time. The opposite happened at one point. When we took her to do a chest x-ray we put her back on our mobile oxygen tank at 1/2L. If she was on 1L beforehand they should have put her on 1L for the x-ray. They did not. All that time her sats were fine, meaning above 94%.

When I was told of their concern about her needing 1L we got into a long discussion about the chart and when they would have changed her oxygen level and particularly why they would have done it without telling me. Basically, I think it was mischarted and the nurses had a harder time setting her oxygen level on the wall than on our home machine. So they meant to set it to 1/2L but it was accidentally set higher.

Anyway, to avoid beating the dead horse, I later requested that they lower her oxygen when it was clear that 1L was keeping her in the high 90s and even 100, higher than necessary. At 1/2L she dropped to where they wanted her all along, above 94%. (This was after receiving her dose of Lasix, too, so that muddied the waters.) 

We all came to an agreement that we could go home and come in for a follow up in a day. She had a previously scheduled appointment with Dr. Sagel today, so we're keeping that and then return to the cardiology clinic Friday a 8:30am.

Today Iris is 3 months old. I typed this all with one hand while she sleeps in my arms.

emergency room visit

We are in the emergency room at the moment waiting to be admitted for the evening. Iris had a very scary episode of some very scary symptoms earlier in the evening. She vomited (her 2nd of the day) and had diarrhea. These can be signs of heart failure. Additionally, she was in a cold sweat and was having tons of bubbly saliva (foam?) coming from her mouth. It did not appear to be a seizure, so far as we know. As we decided to make the drive to the ER her skin became mottled and ashen. We rushed out the door and on the way to the hospital we called 911. I had them connect us to the ER at Children's Hospital so that they would be expecting us when we arrived.

By the time we arrived Iris had fallen asleep. A little while later she looked fairly good and she is now sitting in her dad's arms feeling kind of smiley.

The best guess for what happened is that she had an episode of SVT (supraventricular tachycardia). She is on digoxin to combat this condition but it can still recur. Iris and I are staying the night and I imagine we'll be discharged tomorrow. More info when I have it.