Friday, February 13, 2015

First hospitalization since NBICU

This winter has been rough .... Elsie has had cold after cold after cold. Luckily, she has never had anything worse than a cold/cough, but it's still not fun. Elsie hasn't gained much if any weight for a month or two, because each time she gets a cold, her vomiting increases from excess mucus and coughing too hard. We are hoping that once cold and flu season is over, she will be able to gain some much needed weight. RSV is currently "very high" in our area, and other respiratory viruses are "high", so it looks like we might be skipping nursery for a few weeks to keep Elsie healthy.

On the morning of Monday, February 9, Elsie coughed up some phlegm that was bloody. It wasn't  really bad, but I know that it's not normal, so I called and left a message at her pediatrician's office. When they returned my call, they said that yes, they'd like to see Elsie, but they didn't have any openings until 5pm. I almost didn't take her. She seemed to be doing fine, and there had been no more blood. But luckily, I took her in anyway.

When we got to the ped's office, they put a pulse ox monitor on her foot (which she hated, by the way, it must have reminded her of when she had them on her feet 24/7). Her oxygen saturation levels were only in the high 80s. Occasionally it went up to 90 or 91, but never higher. Ideally, normal oxygen levels range from 92-100% saturated. The higher the number, the more oxygen your lungs are receiving. They gave her an albuterol breathing treatment, and then put the pulse ox back on. No change. Still in the mid- to high-80s. Given Elsie's medical history of prematurity, intubation, steroid treatment, and Chronic Lung Disease, they immediately hooked her up to an oxygen tank and sent us on our merry way to Primary Children's Hospital. The thing is, before we went to the Dr's office, I had no idea that her oxygen was low! I'm so glad I took her in to get checked out.

The breathing treatment, aka elephant nose, at the ped's office

By the time we got to the ER at Primary's, it was about 9pm. There were TONS of people in the waiting room. We got taken back to an exam room relatively quickly, and they took a culture from her nose to be tested to see if she had anything that could be identified. She was hooked up to their oxygen and a pulse ox, which had a monitor just like the one Elsie used to have in the NBICU. Oh, those dinging alarms are sounds I will never forget. Anyway, they hooked her up, took the swab from her nose, and then we waited. And waited. And waited. Various people came in intermittently, but for the most part, we were alone and bored. Because Elsie was hooked up to the oxygen and pulse ox, she only had about a 3 foot radius of where she could go. Entertaining a 2 year old in a small exam room with very little to play with for more than three hours left us very bored. There came a time when Elsie discovered the box of kleenex, and tore out every single one of them, and I didn't even care. Not one bit!

In the ER exam room, right before the kleenex started flying around the room

Because Elsie was being really wiggly and not holding still, the pulse ox was having a hard time reading her, and the alarms kept going off that she was desatting. Not a single person came in to check on her when the alarms went off. Having had experience with the pulse ox monitors in the NBICU and at home, I knew she wasn't really desatting, but what if she had been?? None of the nurses checked on her to make sure she was ok. I was pretty annoyed, but I know they were really busy, so I tried to be understanding. But I was annoyed because I had no idea what was going on or why were waiting for so long. No one was telling me anything. And I really had to pee.

Right around 12:30 in the morning, a nurse from the third floor came down to get us, and we were getting admitted to the hospital for the night. Apparently the ER nurses/transport people were too busy to bring us up, so they had to come get us. Up we went to the third floor, Children's Medical Unit. They brought us into our room, and right away, I knew there was a problem. There was only a hospital bed! No crib! Ok, I know Elsie is two, and most two year olds are not sleeping at cribs anymore, but guess what, I don't care. Elsie still sleeps in a crib, and I have no desire at this point to move her to a toddler bed. She has never once tried to climb out, unlike her big sister, who was climbing out/falling out regularly since she was about 16 months old. Anyway, I told the nurse that there was no way Elsie was going to sleep in that giant hospital bed all by herself, and that we were going to need a crib. Luckily, a crib was available.

So then, we had to be examined by our new nurse, then a 1st year resident, and later still, a third year resident. I had to give a lengthy medical history to the third year, and she and the nurse were of course very impressed with Elsie and her amazingness. After all of the examinations, explaining things, and more waiting, they finally left us to go to sleep at 2am. Elsie was exhausted, I was exhausted. Luckily she quickly went to sleep. Unluckily, the nurse had to come in at 4am to check vitals, and that of course woke the both of us up. Elsie had a hard time going back to sleep after that, and I was having a hard time sleeping as well, The nurse came in again to do vitals at 8am, which woke Elsie up for the rest of the morning, and she was pretty grouchy. But the good news is that the tests from her nose culture were all negative, so it was likely just a bad cold that settled in her chest. No scary RSV or influenza or other nasty viruses. She was doing great with her sats, so they turned off her oxygen at that time, and left her on room air to see how she would do.

The rest of the day, we sat around and played in a two foot radius. Elsie kept getting tangled up in all of the cords, and the wires from the leads that the nurse placed on her chest kept getting caught on Elsie's gtube. It was frustrating. Luckily, we had an awesome visitor come and hang out with us, and she also brought me lunch. Thanks, Auntie Mona!

Ooh, that reminds me, I almost forgot to talk about the food! Ok, so the pediatrician sent us straight to the hospital. I wasn't able to grab any of Elsie's food from home to bring with us. I didn't know what Primary's policy was on Blended Diets, but I had previously heard mixed reports from various tubie families around the country; some hospitals are pro-BD, some are not. I had sort of resigned myself to the fact that we'd probably just have to feed Elsie formula for the day. Imagine my surprise when the dietitian brought me an entire menu of foods I could choose from for the kitchen to blend up for us! It was great, because that means that BD is becoming more of a normal thing. Nobody blinked an eye when I told them Elsie was fed BD. It was fantastic!

This is Elsie not wanting to take a nap in the crib.

Alright, so this blog post is getting just about as long and boring as was our hospital stay! Let's wrap things up. Elsie had been on room air (no supplemental oxygen) all day. The doctors wanted Elsie to take a nap so that they could observe if she could maintain her oxygen levels while she slept. Elsie, however, did not want to take a nap. We finally got her to lay down, and just when I thought she was asleep, her little head pops up, looking for me, and she starts crying. Repeat multiple times. After trying to get her to sleep for what seemed like an hour, I sat with her and rocked her in the rocking chair, and she finally fell asleep.

At this point, it was just me and Elsie. The battery on my tablet died and I couldn't reach the charger without disturbing Elsie. I didn't have anything else within reach to entertain myself. So I simply watched her sleep. I saw the sticky marks left on her face from the tape the ped used to tape the cannula to her face. I saw her beautiful eyelashes laying against her cheeks. I stroked the curls at the back of her head. I watched her breathe. And suddenly I was reminded of this moment:

 The very first time I held my little baby. 

She nestled up against my chest, light as a feather. And her mouth gaped open, like a little baby bird, and that was her nickname for a while. Baby Bird.

And here we were, again in the hospital, tangled up in cords and wires just like the first time I held her. Her mouth gaped open as she slept, and she was my little Baby Bird once more.

After a nice long nap with great oxygen sats, the nurse came in with our discharge papers, and we were free to leave. Hopefully we won't have to experience a hospital admission again any time soon. We finally arrived home, were greeted joyfully by Clayton and Evje and were sweetly reminded that there's really no place like home.

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