Lots of stuff going on since my last post. On Thursday we got our Farrell bags. We have been pretty excited to try these out. They are basically our next attempt towards getting Casey off continuous feeds and moving towards bolus feeds. We have been trying everything we have come across as far as feeding methods go. So far we have not found our magic beans. The Farrell bags are a way to advance the amount and instead of Casey refluxing the additional food she would hopefully digest most of it, and what she can not would go back out the pressure bags (Farrell bags).
Even after getting a Nissen Fundoplication when Case was 1 month old we have still been battling with reflux. We have had many Upper GIs done to be sure the fundo is in tact and in place. The fundo is, it was just never done tight enough. It is not worth putting her through another surgery to have it redone either. With all of her respiratory issues, surgery is a LAST resort for us. Hopefully we will make some good progress with the Farrell bags.
I was really hoping to take some pictures of the new bags, and Casey to post with details on how she is doing on the new method. However while we were trying it out on Thursday our camera died. We plugged it in to charge, but have not been able to try the bags again since. It has been a pretty busy past few days.
After trying the bags on Thursday Casey had a hard night. We decided to back off pushing the food and wait until Monday to really get started.
Casey had a follow up appointment Monday morning with her pediatrician. We expected a quick nothing to it visit. He just wanted to see how she had been doing since the second round of antibiotics. We told him that her saturation had been slowly improving, her secretions were starting to be a little less and the color had gone back to normal. We told him that she seemed to feeling better. She was awake more and wanted to play, no fevers, and just overall seemed to be getting better.
They wanted to do another xray to compare to her previous image to make sure the small blurb they saw in her left lung was gone or at least better. No problem. After the xray we waiting on the doctor and really thought we were done. Not this time. He said the xray looked worse. The blurb was a little bigger and that concerned him since she had already gone through 2 rounds of meds. He paged her pulmonary doctor and they started using the “H” word (hospital). We hate to hear the “H” word.
We were sent home (finally) with a new medication to add to her breathing treatments. This medication should help thin out and bring up any remaining fluid in her lungs or airway. In addition to the new medicine we were also told to increase the number of breathing treatments we give her from 2 to 4-6. Lastly we were told to do aggressive CPT (chest percussions) every 2 hours. Then Wednesday morning we have to take Casey back to the pediatrician again for yet another set of images. Hopefully this will go better tomorrow. Monday afternoon we have to take Casey to see her pulmonary doctor as well.
We started her new medication yesterday afternoon. We were about half way through the first treatment when we had to stop because she coughed up some really thick stuff. Since then she has been doing pretty good at getting stuff up. I really hope that the images look better. I know she feels better. I just hope we don’t have to have a big fight with the doctor to convince him that she is okay and does not need to go to the hospital.
On another note, we have been interviewing nurses again. We interviewed for a respite nurse a little while back. We ended up putting that off and instead we have been working on getting a day nurse. I really think it will make all of our lives much easier. We interviewed 2 this week. The first one wanted to be full time and the second was looking for just 1 day a week. Being that we have nothing now, we decided it would be easier for all of us to go to 1 day a week. If later we think we need more we can redo things, but I think 1 day a week will be a good starting place. We really liked both of the nurses that came out. Hopefully everything will move quickly now and she can start right away.
After we get the all clear on Casey’s lungs we should be able to try the Farrell bags again. We will post lung updates with Farrell pics as well as news about a nurse later. Hopefully we will not be posting anything about having to go to the hospital, or fighting to keep her out.