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.

steamboat springs

Last weekend we took a one-night vacation to Steamboat Springs. My Aunt Nancy had been painting (she is an artist) there for a week and we wanted to be sure to visit while she was in Colorado. It is a four hour drive for people with babies, so most of the weekend was spent in the car. Iris did really well on the trip and it was her first car ride facing forward.

Facing forward for the first time

Riding in the car is a great way for Iris to see her city, especially the cars, which she calls, "gaga." This is also the name she uses for dogs.

We all need our sunglasses on

Iris usually dislikes having her sunglasses put on while we're in the car, so I often show her that everyone else has to have them on, too. I think this helps. At least for a little while.

We had to take the concentrator with us but failed to bring both portable oxygen tanks and since she was on a higher oxygen flow at higher elevation, that means we weren't able to do as much as we might have on Sunday because we had to be sure we were driving home with a full oxygen tank. This was a major planning fail. 

Concentrator packed

 Shortly before this photo below was taken, we hopped in the car and took off. Then I realized I had forgotten my cell phone and we had to turn around before getting going for real.

 We managed to keep Iris out of trouble while visiting the graphics studio where Aunt Nancy was painting. (All of the above photos were taken by my dad.)

Visit with Aunt Nancy

Looking at Iris's toes

In case you're wondering, I forgot Father's Day. Technically, I didn't forget it, but I thought it was on Monday since I couldn't imagine figuring out how to celebrate while we were on a trip. I think Evan might have forgotten too, but when we saw the print shop owner on Sunday morning, the first thing she said was, "Happy Father's Day!" And this was while Evan was making eggs for all of us. Ugh. Second major fail of the trip.

I tried to make up for it by bringing home a bag of cookies from Whole Foods and some meditation magazines. So after Iris was asleep we drank peppermint tea, ate cookies, and read meditation magazines.

first father's day

A lot can happen in a day. I got plenty of sleep last night and even an afternoon nap. Unprecedented. We had vague plans of going to a park today for Father's Day but that instead turned into a short walk to the closest park. The walk might have gone longer had the clouds not been threatening rain all around us. Really, the day was full of errands that Evan ran while I stayed home with Iris. Evan and Iris did have some good quality time in the morning, though:

Iris had a great day (with the exception of her early evening fussiness, which has become a pattern that we need to disrupt) -- no vomit! And she even ate 100 ml during an afternoon feeding. We also talked with all the grandparents today and Iris was even dressed in a cute outfit (until there was an unfortunate mess made...).

I gave her acidopholis in her bottle this morning and then we started her on Nystatin, an antifungal medicine for the thrush. Tomorrow is another visit to the Caridac Institute at Children's Hospital. Her incision is healing pretty well, but there are two spots that are not healing totally wonderfully. We closed the day with dinner on the patio and it is now time for me to get to bed ASAP.