The First Unexpected Hospital Stay

Look at that cute little girl. Poor thing has had a rough life thus far. Notice that her diaper is like massive. They told us they didn't have newborn size diapers, only preemie or 1s? What the crap? If that's true that's the most retarded thing I have ever heard.

So like I said before we thought we would enjoy some peace and quite with little Aili home while we waited a few months for her surgery. We had gone to the pediatrician a couple times, she was doing well, gaining weight, looking good. Then on Friday February 24th we went into the pediatrician to get a Synagis shot. Because she has a heart defect she is at higher risk for RSV, so this was to help protect her against it. (By the way thank you goodness for insurance, because this shot was ridiculously expensive. One shot is almost $3,000.) So we went in late Friday afternoon to get this shot. My friend Abby works for the pediatrician and takes good care of us. She checked Aili's oxygen saturation it was quite low. Abby told us that she looked "dusky" to her. At that time I didn't know what that meant. I was kind of frustrated. And kind of felt stupid that I didn't see that she looked "dusky". I kind of felt like a bad mom. How long had her oxygen saturation been low and I didn't know and didn't do anything about it?

They put Aili on oxygen. The started her off low, tested her saturation, it was still low. Then they turned it up pretty high. He could hear it blowing into her nose. I felt so bad for her. You could tell she hated it and it was making her mad and uncomfortable.

Dr. Arnold (our pediatrician, who is awesome by the way, love him!), came in. He told us that we needed to go to see a cardiologist at the hospital. The worry was that her physiology was changing, and that possibly those collaterals (MAPCAs) that take the blood to the lungs where getting smaller and closing off.

We have a cardiologist at UVRMC in Provo, but he just so happened to be out of town, and he is the only pediatric cardiologist at that hospital. So we had to go up to PCH. Blah! Dr. Arnold told us that we would be admitted to the hospital so we would be prepared for that. He called up there and told us that a cardiologist would meet us in the ER.

I felt so discouraged. We had been home from the hospital only 9 days. We had just started to get into a routine, and I just started feeling comfortable with her being home, with being a mom. I was starting to feel like we were normal. In a matter of minutes that was taken away from me. I started crying. I couldn't even look at Dr. Arnold when he was telling us what we needed to do.

I called my mom crying again. Because everyone needs their mom, even when they are a mom. Mom's just make things better. She met us at our house. We grabbed some things, fed Aili (which was difficult with oxygen being blasted up her nose), and headed up to PCH. My parents followed.

We got into the ER and told them the name of the cardiologist that was suppose to meet us there. And this was the start of me loathing PCH. They put us into a triage room, because we were in the ER that has a billion sick children in it, with a baby who has a heart defect, that cannot get sick. They hook her up to the machine to check her oxygen sats, and they do all their little checks on her, weigh her and everything. They whole time we are thinking why are we doing all of this here? We just need to meet up with the cardiologist and get admitted. Then they moved us to one of the ER rooms to wait. A nurse came in, listened to her heart, felt her liver, pinched her toes. Then one of the ER doctors came in, listened to her heart, felt her liver, pinched her toes. Then someone else came in, listened to her heart, felt her liver, pinched her toes.

This whole time we are thinking "Why the hell are we still in the ER! Stop bugging her and let us see the cardiologist and just get admitted upstairs!" We were told that the cardiologist was busy with another high risk patient and that they would come down when they could. We asked approximately how long that would be. They wouldn't even give us an approximation.

Then all of a sudden a guy comes in to take Aili to get an X-ray. We had never seen, or heard about her getting an x-ray before so we didn't know why she was getting one now. We asked the nurse about why she was getting it, and one of the doctors (who was a total witch, I seriously wanted to punch her, she was so rude) and basically all they were saying is that this was procedure and they were doing everything the could before the cardiologist came down.

We were so bugged because no one in that ER knew Aili. They didn't understand her, and her case. We just felt like they were bugging her when she didn't need to be bugged. Finally another doctor came in and explained that when Aili was in there before they did an x-ray on her almost everyday, they make sure that there is no liquid in the lungs and that everything looks okay. Why did they have to bring a 3rd person in to tell us that? Just tell me that to begin with, and I would let her get the x-ray, but she wasn't going to go get one just for the heck of it.

So she got her x-ray, we went back to the room to wait. Pretty sure at least 2 other people came in listen to her heart, check her liver, and pinched her toes. And then we waited some more. Then the cardiologist finally came down! What a relief someone who actually understood Aili, knew what was going on with her, and could actually do something to help. She then, listened to her heart, checked her liver, and pinched her toes. (Are you feeling really bad for Aili by now? We sure were, poor thing.) The cardiologist ordered an echocardiogram (echo for short) to be done. This would help them see if her physiology was changing.

It took a while for them to come back down with the machine and then do the echo. Then we sat and waited while the cardiologist looked at the echo. They came back and told us everything looked the same. But that we would be admitted at least over night so that they could watch her. Then again we waited to be assigned a room.

We waited in that horrible ER for 6 hours. Why you ask? We knew we were getting admitted before we even got there. The pediatrician called and talked to them. Why? Because no one freaking communicates with each other up there, and they are just robots that do their jobs and don't have hearts. Okay so that was kind of harsh, but you would have felt the same way after going through that. And it is kind of true.

We hadn't eaten anything since lunch, and it was past mid-night by this time. We got up to her room, and seriously no lie, at least 4 other people, listened to her heart, checked her liver, and pinched her toes. We were about to lose it.

I felt like I needed to sleep there and stay the night with Aili, I couldn't leave her alone, and I needed to feed her (even though I had brought frozen breast milk just in case). I didn't want to stay there though. Who wants to sleep in a hospital? I was so hungry, exhausted and overwhelmed. I couldn't think and just started crying. For some reason the nurses look surprised when this happens. I don't know why. I feel like they would do the same thing in my shoes. They just forget to think about it that way, and they are just doing their job.

We went and ate a really late/early morning dinner in the hospital. I felt a little better after I got food in my body. Chris and I decided to stay the night. Chris mostly because I really wanted to not be there by myself. I don't think so slept at all there was loud beeping out in the hall the whole night.

Once Aili calmed down, fell asleep and people stopped bugging her, her oxygen saturation went way up. They slowly turned her oxygen down all through the night and morning to where she was barely getting any. They did a test on her in the ER to see if she had any sickness that would possibly be causing her oxygen sats to drop. We waited to her back the results of those. They were all negative.

In the morning the consensus was that she was doing well, just needed a little oxygen, and they wanted to send us home. They mostly didn't want her in the hospital unless she REALLY needed to be, because there were so many sick kids in there, and they didn't want her catching something while she was there.

Luckily we didn't have to wait as long this time for our discharge papers, and actually got to leave before it was dark. Right before we left they gave us a rundown of what to do if she turns blue...etc....etc. I still didn't know how to tell if she was blue or "dusky". Because I apparently wasn't seeing what they were seeing. Again it was overwhelming being sent home with her not knowing how things would go. But it was SO nice to be able to go home so soon.

When we got home they sent over a guy to give us a big oxygen tank, a few small portable tanks and big long oxygen tubes that could reach through the whole house. Fun, this was our new normal. This is what we had to do until she could get her surgery. But if she could be home with us, I would do it.

I thought now that she was on oxygen everything could settle down again and we would be okay til surgery.....should't have gotten my hopes up...