Tracheotomy

Toby got his tracheostomy this afternoon and he is recovering well. They are in the process of weaning him from the ventilator that they used during surgery. Carrie said he has a bit of an air leak around the trach and so they can hear a little of his voice (This is a blessing. Many parents are not able to hear their trached children's voice).

Thank you for all your prayers today! Continue to pray for strength and that their family might be home together again soon!

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!

Carrie is Discharged

Thank you to Erika for starting it up so friends and family could stay updated. I was discharged from Riverside Hospital yesterday, and I'm feeling pretty good. I was actually able to walk to the elevators today while seeing Toby today, instead of being wheeled up in the wheelchair! :)
Toby is doing great! His back is healing from surgery, and he's drinking bottles and nursing well when I'm there to feed him. He's such a piggy - gained 8 oz. since Saturday! :) He weighed 6 lbs. 2 oz. today.They performed the CT scan of his head this morning, and it only took about 5 minutes. He opened one eye as if to say this is comfortable, and then went back to sleep (He was wrapped in his blanket and had cotton around his head so he wouldn't move during the scan). We don't know the exact results of the scan, but tomorrow morning they are doing surgery to put the shunt in. Surgery is scheduled for about 7:30-8:00 a.m. They will insert a rubber valve (which is the shunt) into the fluid filled part of the brain, and feed it through his neck and body cavity into his stomach. As fluid builds up in the ventricles of the brain, the shunt drains the fluid down the tubing and into the abdomen. The surgery should only take an hour. Please pray for us as it will be a long day at the hospital, and for a quick recovery for Toby.We've been blessed to have my family here visiting and taking care of the house and the boys. Last night Grandma and Grandpa Holt stayed with Toby so we could celebrate a late Christmas. Today the boys left to go to Michigan with my parents, and it's been a little difficult, but we know this is the best place for the them, and for us. My sister Lynsey is staying with us this week to transport me to the hospital when needed and to take care of us. She cleaned the house today, which was a huge blessing. Bruce and I are so thankful to our parents and siblings for taking care of the boys, being with Toby when we couldn't be, and just being there through all of this.God has been so good to us. I just can't even express His goodness. Things have gone much smoother than I could have even imagined, and we are continually encouraged by everyone's prayers and the love poured out on us.