Hi All,
Tina here. We hope you all enjoyed your holiday weekend! We were very lucky and got to spend it with Ryan's mom (Grandma Suzy). She has been such a huge help to us and even found time to get us some beautiful flowers and plant them for us! She was really looking forward to seeing Ethan at home. Unfortunately, Ethan had a setback on Thursday and we had to readmit him to Children's in Boston.
Thursday around noon Ethan began to have a lot of secretions out of his mouth and nose and he began to have respiratory distress. We were trying to manage it as best we could at home, but we were only able to calm him for 10 or 15 minutes at a time. We got him through the night and he was finally able to sleep for a bit, but he was up early and was even more agitated than before. We decided it was time to take him to the hospital. We had to take him to Concord because we knew we could not make it all the way to Boston in the state he was in. They started to do tests and try to get Ethan comfortable, but with little success. He had a temp up to 102.9 and they finally decided to call the ambulance to get Ethan to Children's. He was admitted to a pediatric unit but many of his original doctors and surgical fellows were there which was assuring. They had to put him on some pressure support and increase his oxygen. They put in IVs and got X-rays and blood work.
Cardiology came up and told us that they were not concerned with his heart and that his heart was in a good spot. We did not get any results from other tests until Sunday when they finally determined that he does have pneumonia. They are not sure what caused it and if it was viral or bacterial. We were told today that they are concerned that the pneumonia was caused by his original TEF/EA repair. They said that when the surgeon disconnected his esophagus from his trachea that there was a remnant (the out pouching that we knew about). They think that the remnant/out pouching had connected back to his esophagus somehow. This is not unheard of, but is rare. Ethan will have to go through a series of test to check out this theory and it is likely that they will decide to do another surgery to correct things again, We should know more by the end of the week when the tests are complete.
In the mean time, Ethan is back to his happy and smiling self. He has not been able to get off the pressure support as he seems to have some chronic lunch issues that are making it harder for him to exchange his gases normally. He has some collapsing of his right lung that they are working on and the pressure support will help him open this back up. He is very much holding his own. They have to give him "Chest PT" which is when they pound on his chest to try and loosen up the secretions in his lungs. He had a nurse, Jay, who said that every time he gave Ethan chest PT, that Ethan would vigorously hit him back!
We have spent a few nights at the hospital with him, but it is hard with Kevin. He started to get a temperature over the weekend as well and seems to be fighting something as well so we have had to keep a close eye on him. So far he is managing well, just a bit grumpier than normal and not eating his solids as he usually does, but he is still taking a bottle and sleeping well.
We are trying not to get too discouraged with this setback. It is very difficult to see him back in a hospital and with IVs and respiratory support. We thought we were past a lot of this. Your prayers and support are very appreciated during such a difficult time. We still await Ethan's first holiday home.
Love,
Tina, Ryan, Ethan and Kevin
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