Happy Valentine's Day From NCH

Toby had a good day yesterday and a good night last night. He slept a lot, which was good. He is off of the ventilator completely and is back on the mist collar with just a little bit of oxygen through the collar. The mist collar humidifies the air that he breathes, and is something he will have at home. They also started him back on milk. Yesterday they were giving him IV fluids and 1 ml of pedialyte over 6 hours!! The nurse said she could spit more than that, which made us all laugh. So, he's been pretty hungry, but so far he is getting his food into his stomach, so that's good! He's now getting 15 ml over an hour. They wanted to give his stomach and digestive system time to wake up from the surgery on Tuesday, so they needed to give him food slowly. Tomorrow they're doing the sleep study. We're praying he sleeps so they can actually do the study!

Blue Episode - Giving us a Scare

Last night was a rough night. We got a phone call at 2 a.m. that Toby had de-statted and turned blue. The nurse was suctioning out his trach, and he was pretty upset. The doctors think he made have had an episode of central apnea, where his brain didn't tell him to breathe, because nothing was blocking his airway. Afterwards he was still struggling so they put him on a ventilator. As of this morning, the ventilator is not breathing for him, but he's receiving the Constant Positive Air Pressure through his trach (or CPAP). He also had some apneic episodes this morning, and so if he waits to breathe longer than 8 seconds the ventilator will give him a breath. (The machine can be set to a ventilator or a CPAP setting). They're wondering if the apnea might be from the results of having surgery yesterday and the anesthesia still wearing off. Toby gave Bruce's mom quite a scare, and I came right away down to the hospital to find out what had happened. They are going to start his food slowly today, into his stomach. It was a rough evening, especially for Lon Nell. Sometimes I wonder how much more we can take. It seems just when things start to look good, he has an episode that sets him backwards. We continue to trust the Lord that He is in control. He continues to ask, "Do you trust me?" I do, Lord, I do. Help me to trust every moment.

Nursing Care and Surgery Update

He came out of surgery just fine, and is having a restful afternoon. Please pray that they will decide to feed him into his stomach, it will make life so much easier, and better for his comfort level. Also, the sleep study begins Thursday morning at 8:00 a.m. So far, Toby hasn't been great at sleeping, so pray that he will sleep well that day and be comfortable (without drugs to help), so they don't have to perform it again and prolong our hospital stay. Also, we're working with our case worker (we have one through the spina bifida/myelo clinic) to arrange nursing care of some type and the ordering of the supplies we will need. Pray that this goes smoothly, and that we will be able to have nursing help. Not only that, but we want qualified nurses that we will feel comfortable with. They will be working in our home. This is going to be very difficult for me, I'm a control freak! :) God is teaching me to let go, but I also want to have a balance.

Feeding Tube Surgery

Toby is in surgery right now to get his feeding tube directly into this stomach. Hopefully this will be his last surgery for awhile! I'm also praying that they will allow him to get his milk directly into his stomach and not into his intestine. The feeding tube is large enough, they can slide a smaller tube through it and into his intestine, so he can eat that way. I think he would be a much happier baby if he felt like he had some satisfaction from feeling full. It would also allow him to get a larger amount of food at one time instead of just a little bit continuously over 24 hours. We will see what the doctors say.

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!

Discouraged at the Slow Pace

Toby was off of the oxygen last night for about 6 hours, and did pretty well. They ended up putting him back on the oxygen after a few times where he dropped his oxygen levels. This was during a very deep sleep where he had some periods of pausing in his breathing. He is looking quite swollen in his face today, and has been extremely restless. He's also having a very gassy stomach, which we can't quite figure out the cause of. Please pray that we can figure out the causes of these problems - they're not major, but definitely just one more thing to deal with. I'm certainly feeling discouraged and frustrated with the slow pace of things, and the time it takes to find the right doctor to make any decision about a problem he's having. It's requiring a lot of patience! It looks like they will put his feeding tube into his stomach either Monday or Tuesday, and then next Thursday they will do the sleep study. My parents are taking the boys home with them on Sunday for at least a week, maybe two, as we start to prepare for Toby to come home. I'm overwhelmed at the equipment and room set-up we're going to need to be bring him home. We're praying we can get some type of nursing help to take care of him, so I can at least get out of the house a few hours a week. Lots of things for us to think about. God continues to ask us to trust HIM, sometimes it's even minute by minute. He reminds me that His mercies are new every morning, and His compassions fail not (Lamentations 3). Good night.

Day After Trach Surgery

Toby is adjusting to having the trach. He's been in some pain, so they're trying to manage it and keep him comfortable. He's off of the ventilator, and is wearing a mist collar that is hooked up to about 28% oxygen (just a tad above room air, which is 21% oxygen). The mist collar is something he will need while sleeping to humidify the air that he's breathing (our nose does this for us, I just learned). We are a little overwhelmed with the care he's going to need. They will be putting a feeding tube into his stomach sometime in the next week, and next Thursday they will do a sleep study. This is to determine if his vocal cord paralysis is more structural or related to his brain/central nervous system. If it's his brain, it's possible he would need some extra help breathing (i.e. oxygen or ventilator). We're praying that he won't go home with any oxygen or on a ventilator. Thank you for praying - It's been a rough few days. God continues to remind me to take it one day at a time. He is using Toby to touch so many lives, and for that we are thankful. I hope that he has brought you closer to a God that is sovreign and loves us so dearly. Carrie