The end of the year has gotten away from me. Sibyl is now 11 1/2 months and is almost running in her own baby way. She started walking around 10 months old, about the same time as Iris but maybe a week or two earlier. She is babbling a lot and says babble-y things that sound like "What's that?" and "All done."
October, 9 months
November, 10 months
December, 11 months
My mom moved to Ft. Collins (hooray!) and we drove up to visit a few months ago. On the way home we had to make an emergency potty stop so we unexpectedly had our first family trip to McDonald's.
Horsetooth Reservoir
First McDonald's outing
We had a short hospital stay in October for Iris. She had adenovirus along with some other viruses. Treatment for respiratory illness consists of pulmozyme (usually given to cystic fibrosis patients), a vest that jiggles her around, and regular deep suctioning and nasal aspiration.
Sister visits
Sister visits
She was able to get home by Halloween and even go to the dress up day at school. Iris was a koala, which was the same costume she wore as last year. At first she said she wanted to be a blue ghost but then kept changing her mind so I floated the idea of wearing a koala costume and she was totally on board with it.
"Koalas eat you-ka-lick-tus"
Doggie
We went trick-or-treating around the block with the Beckers, who managed to have a theme for the whole family: Pokemon Go. Iris loved trick-or-treating and then forgot about the candy she had gathered by the next day.
When I left Iris on Friday she had just come off of heated high flow and was on 2 liters of oxygen. I was thinking we'd get out maybe on Sunday, at the earliest.
So imagine my surprise on Saturday morning when Evan informed me that Iris had been on 0.5 liters for several hours and that we would surely go home on Saturday. I was skeptical because Evan had said something similar days before when Iris was still very sick. I think his exhaustion correlates closely with these predictions.
Evan's mom came in to town Friday evening and she corroborated Evan's story that some nurse or resident - someone with apparent authority - had come in to the room to say that we would be going home. I still didn't believe it until they had rounds and I got to hear it from the source.
So we were home before noon, which I still don't totally believe. Iris is still on oxygen full-time and she will come off it slowly.
For now, we can start recalibrating to regular life at home and enjoy all being in the same house once again.
I was feeling so optimistic yesterday morning when I arrived at the hospital and Iris had been on 1 liter of oxygen for several hours. The rest of the day went down hill from there.
She had to get back on heated high flow oxygen at 7 liters at 60% oxygen for the rest of the day. When I arrived at the hospital this morning (Thursday), she had made it down to 7 liters and 40% oxygen.
She refused to nap yesterday so I was tearing my hair out by the time Evan arrived. She has tons of energy but it lasts in short bursts. Those short bursts are just enough for her to almost jump off the bed several times and generally cause total chaos.
The days have been running together and are filled mostly with coloring, eating mac and cheese, watching Daniel Tiger, and reading books. Stickers also play a prominent role. Today, we worked on writing thank you notes to the kids who came to her birthday party. That kept her occupied for a very long time and I think we'll do it again after nap time. When she can get out of bed to play she has been super happy with a shopping cart and fake food to give to her animals.
I don't see us getting home any time too soon. She has some massively thick mucus and still needs a lot of help to clear it. We have to be off heated high flow oxygen to go home... so who knows how long that process will take.
Iris started yesterday on 4 liters of oxygen and by the late afternoon she was down to 2 liters consistently. Evan texted me this morning saying that she had been on 1 liters for hours. We are waiting for rounds to figure out if we'll go home today.
It's probably obvious that we want to get home as quickly as possible. Evan has not slept soundly over night since we arrived here last Tuesday evening and it feels awful to have the house void of Iris's chatter and chaos when I come home at night.
We've been in the hospital since Tuesday evening and were transferred to the ICU on Saturday. Iris has RSV with pneumonia. The pneumonia spread from her right lung to her left lung, which was why we had to go to the ICU.
We've managed to get Sibyl care covered so that I can be with Iris at the hospital during the day and Evan sleeps at the hospital at night. We are pretty sure that we've also developed RSV. I have had a low grade fever the last two nights, and I can only assume Evan has the same considering the sleepless nights spent in the room with Iris. I've been very worried that Sibyl is also going to get sick since she's so young, but she hasn't shown any signs of illness so far, aside from some snotty nose in the morning.
As far as medications go, we started her on amoxicillin for the pneumonia but it wasn't working so we switched her to an antibiotic called unasyn, which seems to have had the intended effect. We also started giving her atrovent and pulmozyme to help break up the mucus in her lungs.
When I got to the hospital this morning Evan said she had requested mac and cheese for breakfast. She also requested mac and cheese for dinner. We got her two orders of mac and cheese for dinner and she ate almost both of them.
Mac & cheese!
She spent several hours on regular "wall oxygen" rather than on the CPAP machine today and was starting to jump on the bed. She also tried climbing off the bed one or two times. She is definitely feeling better.
CPAP mask = no fun, lots of TV
During the afternoon trial on "wall oxygen" she was at 4 LPM. They usually are willing to send us home when she gets down to 1 LPM of oxygen. (For reference, she usually sleeps with 1/4 LPM of oxygen and doesn't need any oxygen at all while awake).
Managing a hospital stay as parents of two children has proven to be quite a feat but we've had an outpouring of support from all over the place, all of which we really, really appreciate.
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.
Iris had a pulmonary check up at the end of July. The visit itself was pretty uneventful, so really, no news is good news. Iris is making progress on coming off the oxygen. She is down to 1/8LPM and is frequently pulling the cannula out of her nose. This is a good sign, because it means she doesn't want the extra help. She puts the cannula back in her nose when she needs it. Last night I asked her to put it in her nose, and she did it pretty easily. She is also at the stage where she is shaking her head, "no," so if she doesn't want it in her nose, she makes it very clear by squirming, flailing her hands, and shaking her head.
As far as her growth goes, it's looking great. The nurse didn't do her weight quite right -- she forgot to account for the diaper Iris was wearing. But basically, everything is looking really good. Notice that on the length-for-age chart (the last chart) that she is basically off the curve. She is very tall. (I can access these charts from her hospital chart online. They don't make all the doctors' notes available to us online, but the charts are fun to look at.)
Going back to the hospital for our clinic visits is always a surreal experience, and I expect it will be forever. Every time I see the logo and pull in to the parking lot, I have little flashbacks to the weeks we spent in the hospital.
It's a nice logo, right? Playful, hopeful. It has to be because after a (short) while in the hospital, you realize how much pain and sadness lives there, too. Thankfully, we have a lot of hope and the pain and sadness lessens with each day. Even so, it would be very easy to fall into self-pity, especially when worn down due to sleeplessness or other stressors.
The second bit of news I have to share is: I got a job. A full-time job. I'm very excited about the basics of the job, and also about the people I'll be working with. They are letting me start part-time while I get care situated for Iris. Our nanny, who is wonderful, isn't available full-time, and she just finished massage therapy school, so wants to pursue that.
The last several days have been stressful because I have been screening potential nannies and have been looking at in-home childcare options, as well as day care centers. A bit of advice to everyone: Google yourself every once in a while -- it's amazing what I've been able to find out about some of these possible nannies based on their names, location, and sometimes a phone number. It's very easy to decide which ones I don't want to hire after I see what they're talking about on Twitter, for example. My current nanny posts things about accepting yourself for who you are, being helpful to others, and generally inspiring things. She's great.
