Thank you baby Jesus we are out

As you are reading this please understand that I complain in this one about a specific mistake. I usually do not, because they happen, and are not intentional. I don’t want to give anyone a reason to think negatively about anyone who takes care of Anya, because even with mistakes they are awesome. Still, part of my goal in this blog is to share everything that goes along with it...so

Anya was discharged today, thank God. This hospitalization was not much different from the last one, late Friday her cold seemed to be completely gone. The majority of the time she was getting weaned down to her home oxygen. She started sitting up independently while she was in there!

The machine they hooked her up to that I had mentioned is a RAM cannula. I like it a lot. Apparently it is named after an Indian god because the man who invented it was Indian. I wonder if anyone could name a similar device Yahweh or something.

As Anya improves when she is hospitalized it is more and more difficult for me to keep my patience. Early on in a hospitalization I keep my sense of humor and am accepting of what is being done for her. Today as day of discharge I was ready to grab her and go.

Early this morning they transferred her out of the PICU because they needed the PICU bed. This does not bother me, in fact I wondered if it would happen overnight. So I told her nurse to call me with any change. Imagine my surprise when there was a message on my phone this morning from 3 AM. I had not gotten the message until 8 AM. No one bothered to talk to me directly before transferring her.

In theory Anya should be fine on a non-monitored bed by herself. The oxygen monitoring does go to the nurses’ desk and they keep an ear out for her. In practice it does not work. I do not feel comfortable leaving her on the ‘floor’ (aka non-monitored bed) by herself. Every time she has needed to be on the floor I spend the night. Every time I have spent the night something has happened that required me to intervene on her behalf.

Today after I had arrived she de-satted twice without anyone coming in to check. So I did what I did at home: turned up her oxygen and got her through it. With some troubleshooting we realized it was her oxygen equipment that was malfunctioning. I have no doubt that someone would have come in eventually, but small bits of time matter to Anya. She doesn’t have enough reserve energy to bounce back as a normal kid would. It is not that I don’t trust the staff; they just have too many patients. I don’t mind staying, but I can’t if they don’t call me!

All of this anger was diminished by the fact that there was a code going on in a room nearby. Hearing a mother crying for her child as the entire code team works on him tends to put your issues in perspective. It also wanted me to get the hell out of there. I was doing what I do at home anyway! Normally they keep them for a day after they are transferred, but Anya had been stable on her home meds and O2 since the previous afternoon. Since she had moved to the floor the main group of doctors that were taking care of her had changed, and they were not comfortable with her yet. I don’t think they were excited about discharging her but Dr. Najaf talked with them so we got to leave.

I get so frustrated when we meet a new group of doctors like today. Even though they are told she is at her baseline breathing pattern they STILL get nervous. She is weird, but I don’t think she is that weird! In rounds the only description given is CDH with hypoplastic lungs (small lungs basically). Then with the exam they get all concerned about her breathing pattern; she uses muscles to breathe that most people only use when they are in trouble. I have taken to discussing the particulars of her findings before she was born: that the MRI only showed 21% of normal lung, that she had only a small amount of diaphragm on one side. I show them a picture that Dr. Kays gave me of the inside of her chest the day of her repair; it shows a tiny left lung in a cavernous chest space. I hope that this information, along with the visual of Anya, pink and smiling, would reassure them. She has overcome all that! Is it surprising she breathes funny? Anyone with that small amount of diaphragm would need to use all kinds of other muscles to breathe! She is thriving while still needing to do more with less!

It is a good problem to have, but I will still be very happy when Anya improves. Over time she should grow more lung tissue and she won’t need to work so hard, and won’t scare people so much. I won’t have to worry that someone will misinterpret her and treat something that doesn’t need to be treated. The threat of hospitalization will get weaker and weaker. Please God.