A Good Day

Toby is having a pretty good day. He's been more restful, and not so upset. The swelling has gone down in his face. They are putting in his feeding tube through his stomach tomorrow, so that will be one more surgery, and then hopefully we will be free from surgeries for awhile! Wednesday they will change his trach and put in a new one that will be tied around his neck. The current one is actually surtured TO his neck with stitches. The boys left to go to Michigan with Grandma and Grandpa today, it's going to be a lonely week (or two) without them, but it will help us out a great deal. We were forunate enough to have a lot of help this weekend sitting with Toby. We were able to be home with the boys at the same time before they left, celebrated Garrett's birthday (He turned 2 on Friday), and Bruce and I went to church together this morning. Tomorrow, Erika and I are going to go survey Toby's room and start making a list of things we will need for him to come home, as well as a room set-up that will be functional. She and her husband Carl have two boys, and their eldest Evan is 16 hours older than our Conor. Evan is trached on a ventilator, so she has been through this before, and they have been a great resource as you can imagine. We are very thankful for them, as well as ALL of our family and friends that have supported us through meals, sitting with Toby, taking care of the boys, and most importantly praying - going to the throne of grace for us, so we will find help in our time of need. God brought to mind this verse on Friday. For my God shall supply ALl your need according to His RICHES in Christ Jesus. I can't remember the reference, but we are clinging to this promise as we move forward!

Decision for a Trach

Hi Everyone. This is Erika updating. Toby has still had episodes of desaturation (oxygen levels dropping). Yesterday he had a CT scan done and it showed no compression on his brain stem. His spinal fluid is moving very well (which is good). This means, however, that a decompression surgery would not help his breathing issues at all. Therefore, the only option right now is a tracheostomy. Because he has had quite a few episodes of turning blue, they want to put the trach in either tonight or tomorrow morning. Then the doctors will need to decide whether he is ok with just a trach or if he needs a ventilator (breathing machine) as well.

As a mother of a child with a trach and ventilator, I know how unsettling the thought of a trach can be. I also know that Toby will be a happier baby when he can breathe better! His parents will "breathe" better, too.

Thank you so much for your prayers during this time of transition. Carrie and Bruce have a lot to learn over the next few weeks, but God will give them the strength and they will do a wonderful job!