In case you haven’t heard, we’re still at the hospital. This is night number five. Earlier today, we thought things were looking good to go home soon. Now, I just don’t know anymore.
It’s hard. I generally try to be a little humorous about the situations we find ourselves in during the adventures of parenting a baby, and let’s all be honest; there are plenty of funny, if also exasperating and exhausting, situations.
This is not one of them.
It’s not that we haven’t had our lighter moments. Brooklynn has an oxygen saturation monitor. For adults, it’s that thing they clip on your finger. For babies, it’s a little red light that wraps around their big toe. Her toe glows red at night through both pajamas and a fleece blanket, and I think she is a little bit like a cross between Rudolph and ET’s glowing finger. “Attack of Rudolph’s Foot Phoning Home” or some such thing.
Brooklynn is also the undisputed pediatric wing champion at snot production. One of the nurses referred to her as the “Booger Queen”. Today, they emptied out about a half cup of snot from the suction canister. I know that half cup doesn’t seem like much, but find a twenty pound person and a measuring cup. Compare the size of that cup to the size of the head. I’m just hoping that they aren’t sucking any brain out along with all the mucus.
Brooklynn has RSV (respiratory syncytial virus), which infects and inflames the lungs and respiratory tract. It’s common enough in children and adults but normally presents as just cold-like symptoms. However, in young children, it can be slightly more serious.
Last Monday, we noticed that Brooklynn was a little wheezy when breathing, but she otherwise seemed like her normal happy self, so we let it go. Tuesday was a little worse, and by the time Rhiannon picked her up from day care on Wednesday afternoon, things weren’t good.
We have ourselves a happy baby, so when Brooklynn was lethargic and showing labored breathing, Rhiannon took her in to our family doctor. She had a very low oxygen level, and a nebulizer treatment did little for it. I got a call at home that they were in the ER and being admitted to the hospital that night.
We spent about three hours in the ER waiting for a room in the pediatric unit to open up. What we didn’t know at the time is that the room would become our new home for this long.
We’ve had too many nurses and aides to count them all. We’ve grown tired of the cafeteria food and the local semi-fast food joints. We’re a little bit stir-crazy being cooped up in a room around the size of our master bedroom suite for five days.
But we’ve always had the hope that Brooklynn is getting better. During admission, we were told hopefully two nights. On Thursday, she didn’t improve as much as they hoped, so we were prepared to stay until Saturday.
And we made a mistake. We planned. We got our hopes and expectations up. We packed up all of our things on Saturday morning like we were going home. You know what happened. Like I started this entry, we’re still here.
Brooklynn is on oxygen 24/7, but they do a room air test to see what her oxygen saturation will dip to during the night and during the day. Ideally, we’d be in the 90s. We’ll take 85. One night, she hit 68. That is brain damage territory.
We already know that we’ll be taking oxygen home with us in a portable tank. What we can’t take home with us is the round-the-clock monitoring of her levels. When she pulls her canula (the little nose tube) out in the middle of the night, Rhiannon and I would have no way of knowing that unless we watched her all night long in shifts.
So we can’t go home yet.
And tonight, she had to have the highest levels of oxygen since she’s been here. We’ve been treating her with nebulizer treatments of racemic epinephrine. Today we started a course of oral steroids for her lungs and topical steroids for some eczema-like patches that have cropped up due to our lack of lotion-at-bedtime routine.
For those of you who remember the Barry Bonds investigation from a few years ago: Brooklynn is on the cream and the clear.
She also managed to get another ear infection, so she’s on high strength antibiotics. Considering we’ve treated all her illness up to this point with a steady combination of Motrin and Tylenol, she has enough drugs in her to open up her own mini pharmacy.
The doctors and nurses are still positive that she’ll get better soon and that she is on the upswing, but it’s hard. The pediatric wing is completely full. As soon as a room opens up, it is cleaned and turned around to the next waiting patient in the ER.
The majority of the floor is RSV. And the room across the hall from us has been occupied by 4 different patients. Four kids have come and gone in the time we’ve been here.
Today was a rough day. Rather than making progress, she went back a little. It seemed like every time she would fall asleep, some nurse or doctor needed to look at her and would wake her back up. And then you start typing terms like “racemic” into a search engine and you peer-reviewed medical journal articles describing a myocardial infarction in a healthy pediatric patient after receiving the treatment. You find out that 30% of all kids with bronchiolitis (a side effect of RSV) go on to develop asthma.
You have to love the internet, right?
We aren’t doing a room air test tonight. We’re just letting her sleep as much as possible without being disturbed. That already happened for about three hours between respiratory therapy and medicinal administration.
And the doctor could tell we’re getting tired of being here and frustrated with the seeming lack of progress. We’re a little short when a nurse who is helping out doesn’t know how to do a procedure on a baby. We’re a little impatient when help gets tied up another room. I’m pretty sure we’re one of the longest tenured patients on the floor; that’s go to count for something, right?
We’re not going home tomorrow. Frankly, until we actually see discharge papers, I think we’re done expecting to go home. When it happens, it will be a nice surprise. If anything, Brooklynn is handling this the best of any of us. She has toys to play with and basically gets Mom or Dad when ever she is awake.
Brooklynn was born in this same hospital almost seven months ago. She spent two nights here at that time. We’ll be here at least six now. And yes, we are very fortunate to have this type of care. It’s hard to feel life is unfair when we read stories of people performing amputations with only Motrin as medication. I’m sure a few million people would trade spots with us. But this is our baby, our little girl.
We just want her to be better. There is no magic pill; trust me, we’ve asked, repeatedly.
It’s about 2am as I’m wrapping this up. A baby near by is crying. The hospital is fun to visit, but you don’t want to live here. Trust me.
Brooklynn, get better. Please.