We have had a very long two weeks, with little time to post much between trying to stay gainfully employed, understand what we are learning and working to get Amelia home. Two weeks ago, Amelia had a Heart Cath to determine why she was displaying some poor symptoms in labs and at her clinical visit at the end of January. It has been a very busy time since.
Following her cath procedure, we were able to extubate again on Sunday. At first Amelia responded well. However, she slowly started to deteriorate. Looking back, Kim and I think the problem was an issue with the oxygen supply. We eventually changed her supply, but that was not until after the point that the nurses had given Amelia several doses of medicine to calm her down. Over the next 48 hours, we were getting many conflicting pieces of information from our doctors, nurses and other support staff in the ICU. We were getting so concerned about what was happening and what was going on that we asked for our first Family Care Team meeting. We had heard about such meetings, but Amelia did so well during previous stays that we did not need any Family Care Meetings. During our meeting clarified the plan and asked to get everyone on the same page for how to treat and care for Amelia. Kim and I realized that we were going to have to fight a little harder this time to keep Amelia on balanced path forward to get her home.
Our meeting went well…until the shift change. They started changing things again on the night shift. We started to fight. Amelia was having issues and her sats and the nurses and doctors were treating with meds. Kim and I did not want to treat her agitation and fussiness with meds, so we asked to have a chance to console her when she started to act up. By Wednesday evening we started to hone in on where Amelia needed to be at the time. If anything, we went the opposite way of the doctors. We had our day nurse for a second day in a row and she asked for the ability to give a little more meds than the day before. We agreed, but asked to keep it as limited as possible. It worked. She started to come out of anesthesia and we (well, OK…mostly Kim) were able to keep her fairly calm and within tolerances on her sats.
Thursday and Friday she started to improve and get better. Saturday through Wednesday, she did very well. She was awake and responding to Kim and I. We had her sitting up and laughing and smiling and talking to us regularly. Wednesday, Kim noticed a problem with her PICC line. Long story short, the decision was made to take her back to the IV room to insert a new PICC line. This was a major scare for us since she had shown us twice previously (for her Glenn and now for the Cath) that she would struggle coming off anesthesia. All our ICU and Cardio doctors stressed their concerns over the procedure. We were able to get the best doctors to put in the new PICC line. Amelia came back up to our room close to waking up and with no breathing tube. A huge relief for Kim and I.
Over the last two weeks, we, with the doctors and nurses, have been working to wean Amelia off the meds that she is on in preparation for her to return home. At first, three things were tried at once. When she did not respond well, all three were put back. Three more were tried and all moved back. We finally asked the doctors to start working one thing at a time. We slowly pulled some meds down until she started to have problems and moved it back on notch. This allowed us to wean a few of her meds below what she was on just after the Cath. She was starting to do well until the PICC line event. This problem pushed us back about a week. So, our goal once again is to see Amelia come down and off her meds.
At this point, for us to go home, Amelia will need to come off all sedation medicine, come off one of her IV heart meds completely and transition from another IV heart med to oral heart meds. Once we make it over the PICC line hump, this is what we will start to work on again.
Please pray Amelia improves and starts to show signs that she is responding to medicine. If not, we will have to start to talk about our options.
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