Follow up visit in Gainesville

Sunday we started our trek down to Gainesville for Anya’s first follow up appointment with Dr. Kays. We had arranged to have a portable concentrator that pulls oxygen from the air for the trip. The other option was to bring enough oxygen in tanks for six days, and that is a lot of tanks! We did bring a few tanks just as a backup, which ended up being a good idea.

When we got into the Great Smoky Mountains the machine started to beep and error. After multiple calls and troubleshooting with our supplier in St. Louis we gave up and went to tanks. They arranged a different supplier in Florida to supply us with tanks at our hotel so we could save our home stash for the trip home. Have I said before how excited I am for Anya to get off oxygen?

So to the appointment, what everyone has been asking me about! When Dr. Kays came in and picked Anya up, she started grabbing at his glasses. When she couldn’t get them off she tried to jam them into his face. It was a precious moment and I am so mad that I didn’t think to take a picture! Dr. Kays was happy with how Anya has been doing, but there were still concerns to discuss. To start with the positives, her lungs sound good and her breathing is improving. We kept her off oxygen for over twenty minutes during the appointment and she was 91-94%, which isn’t bad but isn’t good enough to stop oxygen altogether. We were able to move her down to 0.1 L, that is right, a tenth of one liter!

I have been hearing a lot of scuttlebutt about kids having problems with pulmonary hypertension as teenagers, and even adults. Dr. Kays put my fears at ease; he believes that if Anya still has some pulmonary hypertension, it should be on its way out soon. Next winter should not be as tough or hospital-ridden as the last one.

The more serious part of the conversation was about Anya’s hiatal hernia. He wants to delay surgery at least a year if possible or longer if it remains stable. That is fine with me. Surgery at this point may include a setback for her. Dr. Kays is also a bit concerned that she isn’t as strong as he would expect, although he is not sure if it could be caused by such a hard winter. He suggested we consider some more genetic testing just to make sure there isn’t anything wrong. The results probably would not change anything we do with her; I am not too concerned about it.

We spent a long time talking about her feeding, or lack thereof. We may try a different tactic, by feeding her continuously through the night and not feeding her all during the day. He was concerned that she may get a bit dehydrated through the day but I am not too worried. When we took Anya to the zoo she started drinking because it was hot, perhaps she will be more interested when she doesn’t get feedings through the day. Anya has been so consistent with gaining weight that I feel we have room to play with.

Last but not least he changed out her g-button. Anya has an uncommon button that is not seen often in St. Louis; we had to acclimate ourselves to educating others about it. The most common button is called a Mic-key, and Dr. Kays suggested we change to that one. Last fall I might have agreed but I have come to appreciate this button. Mic-keys come out easily, sometimes causing ER visits. The positives are that it is more well-known and the tubes lock in place. Anya has learned how to pull her tubes out with her hands AND feet, her button does not lock. The way I see it the whole button will come out when pulled with a Mic-key or the tubing will come out from the button like Anya’s current button. Also, Anya has had virtually no problem with irritation at her button site. Sometimes the body tries to heal that hole and all this red granulation tissue accumulates at the button site, and is really irritated. Anya has only had to be treated for this once, and we do virtually nothing to prevent the granulation tissue. This may not be because of the kind of button but if it isn’t broken why fix it? I plan on using copious amounts of tape to keep that sucker in.

The rest of the time we tried to see as many friends as we could. We met two families through First Lutheran, the Webers and the Carters. They were key for getting us out and socializing with people who didn’t have sick kids! We also met up with several of Anya’s nurses.

When we first went down to Gainesville for the original consult I was very excited about the nurses, almost as much as Dr. Kays’ expertise. My first nursing job was on a medical oncology unit. We all took a personal interest in the people we cared for over and above what is normally seen in a nurse-patient relationship. When we toured the NICU we learned that many of the nurses had particular interest in CDH babies. The picture seemed similar to what I had been involved in on my original unit.

One of the nurses that took care of Anya had been working in that NICU before Dr. Kays came there. Nearly twenty years of a professional relationship! Sandy just so happened to be there the day Anya was put on high flow cannula, when it appeared that Anya may have been failing extubation again. The experience of this nurse helped Anya weather that day.

All the nurses were great but a few have stuck out. Andrea was there the day Anya was born as well as the day of her repair and getting put on ECMO. Cynthia was there the day she was taken down to CT on ECMO, and then the next day when she had a thoracotomy (On ECMO!! With BLOOD THINNERS for God’s sake!!). Laura just happened to be around when I was feeling especially nervous. All of them feel like family now. It was so great to see all of them, so they could see how far Anya has come.

We missed Gainesville. Can’t believe I said that, it might be Stockholm Syndrome, but we did. There are so many milestones to remember when your child goes through the NICU, and all of our old haunts there are permeated with them. Leonardo’s, the pizzeria where the tables are all sticky and it must be a requirement for the employees to have at least one tattoo, but man that pizza is good. The mall where we tried to walk off some energy. All those little restaurants where you could get Japanese style noodle and rice bowls. Scooters EVERYWHERE!

It is good to be going home, but it is bittersweet too.