Hi everyone! Tina here this evening. They boys are asleep and Ryan is running errands so I thought I would give you all an update. As most of you know, Ethan spent most of last week in the hospital, though, it was voluntary. Ethan is home now and doing well and put up with a lot this past week. I wish I could say that it was pretty uneventful, but unfortunately, as is our luck, it was a very rough week.
I will not go in to too many details, but it started out poorly when they were not even ready for Ethan to be admitted last Sunday afternoon. We were told that his Bronchoscopy was being moved to Monday. We went down to surgery around 2:30 pm. I met with the cardiologist and then a new doctor introduced himself as the ORL doctor that was going to do Ethan's Bronch. I knew that this was not right and demanded that someone figure out why our surgeon was not there. He made some calls and found out that the Bronch was not to be done on Monday at all and had in fact been scheduled for Wednesday. This was all news to us and we had to scramble to get Kristen to watch Kevin so Ryan could pick me up. We had to cancel the hotel room because we now had to make all new plans to be there for Ethan all week. When Ethan got out of the Cath, I had a really long talk with the cardiologist who informed me that his heart was actually in much worse shape than they thought. They were able to make it better, but that he would require further open heart surgery and pulmonary valve replacements. On a scale of 1 - 100 (100 being the highest) Ethan's pressure was up at 96! This news was devastating especially since it is likely the surgery will have to take place in the next year or two.
It took Ethan a long time to get back up to his room that night, but ended up recovering wonderfully and I was able to get down with Kevin the next day to be with him. This was the first time that I had attempted the hospital solo with Kevin and it went way better than I anticipated. Ethan's nurse was very helpful and we were able to get a volunteer to help play with Kevin while I helped with Ethan. Kevin was a superstar, especially since he did not have an afternoon nap. I was told Tuesday that Ethan would be going down for his Bronch at 10:30am the following day.
On Wednesday we got up early, packed and headed down to be with Ethan before his procedure. Ryan was dropping stuff off at our hotel while I took Kevin in to see Ethan. The nurse had been neglecting him all morning. I had to put a diaper back on and put his clothes back on him. I was very upset and when the nurse finally came in to check on him she nonchalantly mentioned that he was not going to be having his procedure at 10:30 and they were not sure if he was going to have it at all that day. Apparently, even though they had reserved an ICU room for him for recovery, they did not have any ICU beds available. I was so angry with how the entire week had progressed and I had enough. I was not going to let Ethan stay in the hospital a second longer than he had to and I let everyone know it. I spoke with over a half dozen people and apparently almost the entire staff knew what was going on. There were multiple meeting that took place and in the end, they got Ethan a room and did the procedure at around 4pm.
When the Bronch was finished we met with Ethan's doctor and she had very good things to say about his lower airway. She said that it was well on its way and she felt confident that he would be ready for decanulation in the spring. She then mentioned that the real issue was going to be his upper airway. She pointed out that the trach itself had caused a buildup of cartilage above the trach and it was narrowing his airway. She said that there was nothing to do about it now, but she will do another bronch in six months and will hopefully be able to open the upper airway by dilating it. There is a possibility that extensive surgery and skin grafts may be necessary, but we were told that it is very unlikely. This news, like his heart, was very devastating to us. We were anticipating good news and news of progress. It seemed that the unthinkable happened, they found even more issues that Ethan will have to surmount.
We tucked Ethan in bed in the ICU and when we left he was doing wonderfully. He had a great night and we were able to take him home on Thursday. After at least 5 hours of waiting for the hospital to complete his discharge - it took forever because ICUs generally do not discharge patients home - we packed Ethan in the car and started to head home. Now I wish I could tell you we made it home with out incident, but as Ryan's mom so eloquently put it, "we would have no luck at all if we did not have bad luck." On our way out of the garage a stranger tapped on the windshield and alerted us that we had a flat tire. We spent the next two and a half hours locating a replacement tire and driving around Boston. We found the tire and they replaced it while we all sat in the car, both boys upset and crying. When they were done, Ryan checked out their handy work to find that they had put the wrong tire on the car. We went through another tire change and then had to sit in Boston's rush hour traffic the entire way home. In all, it took us from 1pm till after 6pm to get home. Thank God the boys slept once we got the tire changed and got on the highway.
Needless to say, Ryan and I have been trying to recover from all of the events of last week. Ethan is also in recovery mode and has been sleeping a lot, and more soundly than he has in the past. We have many follow ups in about a month, but for now we are going to just enjoy being home and being together. There are only a few days left of summer up here and you can already feel a bit of cold in the air, so we are trying to make the most of it. We want to thank everyone for all their thoughts and prayers as we need them now more than ever. We would also like to congratulate our very close friends Mike and Shelley Buch and the birth of their beautiful baby girl, Ella!
Thanks for bearing with me through this post. Believe me when I tell you that I only touched the tip of the iceberg of our experience last week!
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