Pseudomonas Among Us

Happy Halloween!!!

Hello everyone! Sorry it has been so long since we wrote last. It has been a very busy end of summer/early fall. We had a lot of visitors, Auntie Liz, Grandma Suzy, Grandma Flatt, Great Grandpa Binau, Great Uncle Dick and Great Aunt Pam. Thank you all so much for coming and for all your help!!! We hope you were able to get some rest when you got back home. Hahaha.

The past few months have brought with it many illnesses unfortunately. Ryan decided that he was not allowed to get sick because Kevin, Ethan and I were sick for almost 2 months. It obviously hit Ethan the hardest, but with some inhalers, Ibuprofen, and lots of patience and tissues, we were able to stay home and weather the storm(s).

Ethan had a follow up with his cardiologist and things went well. The doctor told us that things looked good and that he did not seem to be getting worse. We will go back in the middle of December to check things out again.

Some of the highlights have been that both Ethan and Kevin have been much more mobile! Ethan has learned to scoot on his bum all over the house. He keeps getting faster and stronger and is finally tolerating being on his hands and knees in a crawling position. While he is still a ways away from being strong enough to crawl, he has made some huge developmental strides. He is mostly inspired by Kevin who is taking many steps all on his own. With just a bit more confidence, he will be running circles through the house. He has also been talking!

Sadly, my grandmother, the boys great grandma Marcella Casnellie, passed away on the fifth of October. She left behind ‎9 children, 29 grand children and 34 and counting great grand children. I took Kevin to Cincinnati to be with my family for just under a week. We had a good visit with everyone, dispute the circumstances and appreciate all the hospitality of my parents and my Uncle Dan and Aunt Lori Casnellie. Kevin was able to meet his cousin Jesse for the first time and they got along so well! Ryan stayed in New Hampshire with Ethan. I appreciate so much that he stayed behind so I could be with my family. He did not get much sleep I know, but he did such a great job!

Most recently, we admitted Ethan to the hospital for a sleep study and a sedated bronchoscopy to try and get some answers about his respiratory status. He has had a really hard time maintaining his oxygen saturations over the past few months along with some other issues. We got him ready on Sunday and noticed he had a small rash on his back. We did not think anything of this and took him down to Boston. By the time we admitted him, he was having a very hard time breathing and started to spike a fever and his rash was spreading. They started doing tests and cultures and as is our luck, Ethan had developed a colonization of pseudomonas bacteria in his trachea. Apparently this is extremely common in people with a tracheostomy. They started antibiotics and he will be on them for about two weeks. Our pulmonologist decided to go ahead with the sleep study anyway. Ethan did fantastic. In fact, he did far better than he was doing at home. No one could explain why this was and told us that things were fine. They decided not to go ahead with the bronchoscopy due to the infection. We got to take him home after trying him on a speaking valve. He did very well with this as well and was able to tolerate it for a few minutes. We will be increasing the length of time he is on the valve each day until he is able to fully tolerate it. He has a very loud and strong cry and we were able to hear a faint laugh as well. It will take quite some time until he is able to learn to use his voice, but this is a big step.

While things seemed to go well with the sleep study, we are still getting completely different results at home and we are not sure what to do. Unfortunately, this hospital trip, like most of the others, has left us with more questions than answers. We hope that we can get to the bottom of things soon. We are now heading into the winter and praying that we are able to get through it healthy. We fear for Ethan and hope his immune system (as well as our own) will hold up during the cold and flu season. It will be a long winter for us here and we keep trying to focus on the spring when they tell us we should be able to get this trach out.

Ryan has been such an amazing father and husband through all of this and he is the reason I am able to keep my sanity and faith most days. He has taught the boys the value of a good hug and they are following in his footsteps by giving hugs frequently and enthusiastically. I am so proud of him for the father he has become. He is so helpful with everything, from cooking to cleaning to diapers and bedtime stories. He is so patient! I am truly blessed to have him!

Please keep us in your prayers! We need them so much as we try and cope with all that we have been dealt. Each day is a new struggle with new challenges to face. We are doing the best we can and wish we could do so much more for both Ethan and Kevin.

Love to all

Tina, Ryan, Ethan and Kevin