Monday, February 29, 2016

After the hospital

After we were discharged from the hospital, we were brought an oxygen concentrator by home health. Luckily, the oxygen concentrator has 50 foot long tubing, so that Elsie wasn't confined to a 2 foot radius while hooked up to the oxygen. She was able to go almost everywhere in our house. It was still fairly annoying, because the tube connectors would get caught on things, and she'd get stuck. And we all tripped over the tubes once or twice. But whatever we have to do to help her breathe, we do, so we dealt with it.

We had a follow up appointment with our pediatrician on Thursday, and he checked her oxygen sats to see how she was doing. She was still showing up in the mid 80s, even with her oxygen on, so I'm pretty sure that the reading was off. He wrote us an order for a pulse oximeter, so that we could monitor her sats at home and try to wean her off the oxygen. When the pulse ox arrived, her sats were in the low 90s, and have been getting better every day. By Friday, she went the whole afternoon without 02. We put it back on when she went to sleep that night, because it's typical to de-sat while you're sleeping. And she has been fine without any supplemental oxygen since then. I'm so relieved that she was able to get off the oxygen so quickly, even though it didn't seem very quick to me at the time.

Here's a few more tidbits about our hospital stay that I want to write down before I forget. The nurses all thought Elsie was completely adorable, because I would ask her if she wanted a drink or some food, and her response would either be "Yes please," or "No thank you" in her cute little voice. Even when she wasn't feeling well, she was still polite. Also, there were several times when I would ask her what she needed, and she would say "I need you, mommy". I slept next to her in the hospital bed each night, and she would frequently reach out to touch my arm to make sure I was there. Isn't that the best feeling in the world, to be just what your child wants?

We had several fantastic nurses and techs who took great care of us. One of the nurses was a girl I knew from high school! Ashley Hatch is her name. I'm so thankful to live close to a great facility like Primary Children's, where I know that Elsie will receive the best possible care. The hospital food wasn't so bad, and the facilities in the Ronald McDonald family room, where I took a shower, were awesome. Wish I would have known about that place sooner. In conclusion, they took great care of us, but we're ever so happy to be home.

I would like to make note that throughout her illness and hospital stay, Elsie was able to eat and drink enough by mouth to stay hydrated, and did not need any additional fluids given to her through her gtube or through an I.V. I'm so extremely proud of the progress she has made, and I knew that she would be ok with her oral intake, even if she got sick. Now if we can get her to chunk up a bit more, then we can get her gtube permanently removed. I can't wait for that day!

Sunday, February 28, 2016

3 day hospitalization

It all started last week, when Evje was getting over a cold/cough, and Elsie was starting to cough a bit here and there too. Friday night, both kids had been in bed for a few hours when we heard crying. Clayton went upstairs to check out what was going on, and found Elsie coughing so hard that she was having a hard time catching her breath between coughs. She felt quite warm and fevered, and was coughing a lot, so we calmed her down and doctored her up, and then I let her sleep in bed between me and Clayton so that we could keep an eye on her. We discussed taking her to the emergency room, because I could tell this wasn't just a cold, but decided in the end to try and get some sleep, and see how she was doing in the morning.

After a mostly sleepless night, Elsie woke up Saturday morning feeling fine. Her fever was gone, coughing was minimal, and she ran around the house playing. Unfortunately, as morning turned into afternoon, I could tell she wasn't feeling well. She was clingy, a bit lethargic, and her fever and coughing came back. I decided that, rather than take her to the ER in the middle of the night when she got worse, I would be proactive and take her to the InstaCare now.

I just want to say that I normally am not the type of mom who takes her child to the InstaCare or ER for a cough and fever. I tend to make Evje tough it out when she's sick, unless things get really bad, because it's usually a virus and there's nothing to be done except tough it out. Does that make me sound like a horrible mom? I promise I'm not. But with Elsie ... I get worried more easily. I could tell something wasn't right this time, so I went with my mommy gut and took her to the InstaCare.

After a very brief examination, the doctor thought that Elsie might have pneumonia, and told us to take her to the ER. We went home, I grabbed my phone charger and my toothbrush, just in case we had to spend the night, and headed in to the ER at Primary Children's Hospital.

I was pretty worried that our ER visit would be like the last time we came here, just over a year ago, when we had to wait in the ER exam room for over 3 excruciating hours before they admitted us. Luckily, this time the ER wasn't terribly busy, and we only had to wait in the exam room for maybe an hour before being admitted. Elsie actually fell asleep in my arms while we were waiting, so I could tell she really didn't feel good. She wasn't keeping up her oxygen saturation levels very well on her own, so they hooked her up to supplemental oxygen. I've explained this before, but I'll explain again. Normally, your oxygen levels range from 92-100% saturated; the higher the number, the more oxygen is circulating in your blood. Anywhere below 90% is a cause for concern and will generally call for supplemental oxygen. Elsie's sats were in the mid 80s, which isn't horrible, but she definitely needed some help. After a nose swab and an exam, it was determined that Elsie had human Metapneumovirus.

Metapneumovirus generally produces cold-like symptoms, but for young babies or people with lung problems, it can cause more severe problems like bronchiolitis or pneumonia. Luckily for us, Elsie's lungs sounded remarkably clear throughout the illness, which is great, and it never developed into pneumonia. We thought we might be sent home on Sunday afternoon, because Elsie seemed to be doing better and was off the oxygen for several hours. However, the doctors were cautious and worried that the virus would be getting worse before she got better, as is apparently typical with this particular virus. Since it was still pretty early in her illness, they didn't want us to leave just yet. Which was annoying, but it was definitely good that we stayed. Elsie had to be put back on oxygen later that night, was really coughing a lot, and spiked several very high fevers that scared the crap out of me.

Late Monday night and Tuesday morning was when things were at their worst. Elsie's fever was almost to 104 degrees, and I could tell the nurses were concerned. Luckily she responded well to the Tylenol and Motrin, and her fever went down. But that didn't stop me from having a bit of a meltdown. You see, Clayton was home with Evje, who apparently had developed an ear infection and wasn't feeling well herself, and she was missing her mommy. Clayton had to go back to work early Tuesday morning, so we had arranged for Evje to sleep over at our cousin Shannon's house Monday night, and Shannon would watch Evje during the day Tuesday. However, during dinner, Evje broke down sobbing that she missed me and for whatever reason, didn't want to sleep over at Shannon's house. This is not typical behavior for her. Clayton called me on the phone, and I tried to talk to Evje, but she was just crying so much that I couldn't even understand her, and it broke my heart. In the end, she ended up sleeping at Grandpa Joel's house, because according to Evs, "Grandpa Joel is daddy's dad, so that reminds me of my dad, and I won't be so lonely." I felt so torn up, knowing that my girl was sad and missing me, but needing to be with Elsie in the hospital. I cried a lot, and the doctors probably thought that I was losing my marbles. I asked my dad to come on Tuesday morning and give Elsie a priesthood blessing, and he gave me a blessing as well, and then I didn't feel so bad. Thanks, Dad.

We had several lovely visitors; my sister Ramona and niece Riley visited a few times and brought me chapstick and clothes to sleep in. My parents came on Monday morning and brought me some more essentials, as well as a watercolor book for Elsie and a story book. My dear friend Staci came on Tuesday afternoon with a bag of goodies for me and a basket of toys and treats for Elsie. She encouraged me to go take a shower while she played with Elsie, and I did go, and I did shower, because I smelled very badly. After almost 3 whole days of not leaving Elsie's side, it was quite nice to stretch my legs a bit and look out a window with a view besides the parking lot.

On Tuesday afternoon, things were looking better and the doctors finally started discussing sending us home with supplemental oxygen. We finally got the ok to leave, signed the discharge papers, packed our bags. and then, as I was changing Elsie's clothes before we left, I noticed that she was feeling rather warm again. I debated with myself for a few seconds whether or not I should tell the nurse, or just leave, but I decided to be responsible and told the nurse that Elsie was fevered again. It was up to 103 degrees, so they gave her some Tylenol, made us wait for half an hour to make sure that her fever was going down, and then they finally let us leave. We trooped out to the car with all of our stuff and an oxygen tank, and then we zoomed out of there before anything else could happen to make us stay.