Hello to all our friends and family and sorry for the two month hiatus from blogging. We have had a very eventful couple months and I will try to keep from turning this post into a novel. First, we hope everyone has had a wonderful holiday and is enjoying 2012! We were very lucky to spend our holidays with a lot of our family. We are so grateful for everyone that made it out here to be with us to celebrate Ethan's first Christmas home. It was a beautiful holiday for all of us.
Though the holidays brought a brief calm to our lives, unfortunately, the last few months have been very eventful as far as Ethan's health has been concerned. We have continued to battle Ethan's leaking G-Tube and multiple cold viruses. Everything seemed to culminate on Ryan's birthday where both Ryan and I determined that we were not able to help Ethan because we could not keep him hydrated during yet another bout with an upper respiratory infection. We took him - along with Kevin - down to the hospital to meet with our GI doctor and our pulmonologist. We tried to stress to them how scared we were that Ethan was not doing well. They called in a few prescriptions and sent us home. On the ride home we noticed that Ethan was not looking very good and about 10 miles from home we saw that Ethan's oxygen saturations had plummeted into the 40s and we had to pull over on an off ramp to get him out of his car seat. We were on the phone with 911 while I was pulling Ethan out of his seat and trying to stimulate him. It took quite awhile for him to start to become coherent again and by the time the ambulance got to us he was finally oxygenating relatively normal again.
We were transferred from our hospital in Concord to Children's Hospital Boston and were admitted into the ICU. We told the doctors that we were not leaving until they could figure out what was going on with Ethan and why he had this second severe desaturation. They determined that they would have to do a bronchoscopy and at the same time they would try and fix his G-Tube. The procedure took place on the 18th. He had been recovered from his respiratory infection and they determined that he would be okay to proceed with anesthesiology. The bronchoscopy normally takes no more than 45 minutes and this time he was in there for multiple hours. After waiting by myself worrying, I finally spoke with the anesthesiologist and the ORL doctor who performed the bronchoscopy. They explained to me that Ethan did not do well at all in the procedure and that there were multiple times that he would spasm and not allow himself to be ventilated. This caused him to spend long periods of time with very low oxygen saturations. This was exacerbated by his heart defect. Thank God his heart never stopped. They were able to stabilize him enough to determine that his desaturation episodes were being caused by his tracheostomy falling into the pouch in his airway that was left as a remnant from a surgery back when he was a month old. They put in a shorter tracheostomy, hoping he could tolerate it. The discussion began that he would need to have the pouch removed, however, they were too worried to perform another surgery in the near future due to his bad reaction to the anesthesiology. They were able to coterize his G-Tube which has helped to solve the leaking we have been battling since May.
We all determined that Ethan's status was too dangerous to bring him home so we transferred him back to Franciscans where he could be close to the help he needed should his airway start to fail him. We have gone back and forth about setting a date for surgery with Ethan's doctors and just today Ryan and I had a meeting to determine what the next steps should be. We were hoping to get some good news, but ultimately, we found out that Ethan is no where near able to go through a surgery. The doctors told us that they felt that should Ethan go into such a major surgery, they feared that even if he would survive the surgery itself, that he would not survive the recovery. We have never been faced with such a prognosis for him before and it was very sobering to hear this. They told us that right now the shorter tracheostomy provided him with a more stable airway and that it was not worth the risk of the procedure. They are hoping that with time, Ethan will grow out of the problems the pouch is causing and that they won't have to operate on the pouch at all.
They also told us that with Ethan's combination of issues that they would not expect him to grow out of most of his lung and airway problems until he is around five years old. Ethan's ORL doctor told us that we should not be expecting to get the tracheostomy out until he is around three years old or possibly later. This is very difficult to hear, especially since we were given the expectation that he would be getting it out this spring. We are still trying to wrap our heads around all of the information we have been given today. We spent some time with Ethan at Franciscans before we came home today and he is doing wonderful. Such a happy and active kid! We are trying to take it one day at a time and not look to far into the future. Ethan will remain at Franciscans until the first week of March when they want to do another bronchoscopy to make sure that he is stable enough to come home. The hope is that we can bring him safely home.
Through all of this, my mom has been with us helping us with Kevin while Ryan and I have been taking turns going back and forth to be with Ethan. She was here for over a month, having just left for home this past Friday. We really appreciate all of her help and are grateful to my dad and brother Mark for giving her to us for so long. Ryan's mom is on her way out tomorrow and will be here until Monday. We could not have gotten through these very difficult times with out the love and support of our family. Thank you so much!
On a positive note, both the boys are doing amazing developmentally. Kevin is running everywhere! He only has one speed, fast! He has expanded his vocabulary and his use of signs which has made life a little easier. Ethan has also been using signs more and he has been pulling himself to his knees and loves to spend time standing holding onto things. He has taken his first steps while we hold his hands - though he is very wobbly and his feet move faster than his body can keep up! He has also been sitting himself up from lying down and has started to crawl a bit. We are so proud of our boys and they are both so full of joy! They are very affectionate and are constantly winning over everyone they meet. They are just like their amazing father!!
We thank you for all your continued love and support and we are looking forward to some visitors over the next few months. We are still hoping to make it back to Ohio this summer, God willing. We miss you all so much!
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