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I haven’t posted in a while because I have been too busy or too exhausted to post. Anya started coughing and getting crabby on New Year’s Eve. When she was resting she was fine, but every time she fussed or coughed her sats dropped. I figured she was bearing down when she was doing this; we already knew that when she bears down the blood to her lungs is decreased, and can cause her to drop. Wednesday I took her to the pediatrician and her lungs sounded good. As long as she only needed increases in oxygen for short periods of time, we could try to weather the storm at home. That evening Anya seemed better, happy and playful. Thursday night however was rough, she needed more oxygen all night on and off. I was able to get her down to a more normal amount after Adam went to work, and we both slept. She suddenly woke up crying and coughing and her sats dropped like a stone, and I needed to bump her up higher than I am supposed to just to help her recover.

I called my saint of a mother in law Ruth and while I waited for her to come over I watched for Anya to recover. It was taking a while, and I was seriously considering 911 when she finally started to improve. By the time Ruth and Adam came from work she was more stable and most of the ride to the hospital she was very comfortable and happy. By the time we got to the ER she looked fine, other than the fact she needed twice to three times the amount of oxygen she normally needed.

All through the ER visit she looked great, and did not cough at all. She did desat once during an exam so at least they knew what we were seeing. We got a bed on the floor, but by the time she was transferred her breathing had worsened. Immediately they called the rapid response team and had her transferred to the PICU. This same thing happed on her last admission.

I was all for getting her on some high flow oxygen, she was so much more comfortable on it last time and it seemed like she could use the break, even though her sats were okay on nasal cannula. That was a total snafu. She fought the whole time we were switching cannulas, and this caused her to not have any support for a minute. It may not seem like a long time but it is for her when she is sick. She never recovered fully from the transfer from nasal cannula to high flow.

I was a complete mess and terrified that she was going to need to be intubated. A relatively new therapy was rolled out from the NICU: it looks like high flow, can give support like cpap, and also can give a set number of breaths like a vent. They have only been using it at Children’s for nine months. She immediately calmed down and was able to sleep deeply for a few hours; the first time she has done so in several days.

Her work up has been kind of odd, as always. Her x-ray looked normal, she has run no fever, yet her blood work indicates that she has an infection. She still has not had much coughing. Right now we think she just got worn out from all the additional work and just needs more support. They are trying to wean her slowly off of the extra support, tomorrow they may try her on high flow or nasal cannula, depending on what is going on. She has been cranky at times but a whole lot more comfortable, having some energy to play a little. I actually think she is getting bored!

This has been the scariest 48 hours since she was on ECMO for me. I did not expect her to be that sick or need that much therapy! Right now I am thankful that she is comfortable and she is stable. I won’t try to anticipate how long she will be in, at least a few days I would think.

A funny anicdote is all the PICU medical staff’s reaction on seeing Anya again. Many of them took care of her last month, and they all exclaimed about how much she had grown. Dr. Najaf laughed to see Anya sitting up and staring at Adam as he ate a hamburger in front of her. It is great to know that despite all her lung issues she is still surpassing so many expectations. Praying this is a quick stay that doesn’t set her back too much, and thankful she is doing better!