My doctors decided today that I was not quite ready yet to attempt taking me off of the ventilator. They want to give me another day or so to get my strength up and let my steroids and other medicines heal my airway and lungs. One thing that we have learned through all of this is patience, so we can definitely wait for things that are in my best interest. Overall, I had a pretty good day and have continued taking my feedings and weaning down on the ventilator settings. Interestingly enough, I had one of my fits (as my Mom calls them) today. Over the last month, we have been trying to figure out what has been causing me what appears to be severe discomfort. We thought at one point that it may have been the hernia, colic, bronchial spasms, irritability and even the airway obstruction. It seems that it is not any of these because my hernia is fixed and I am on the vent, so it leaves the question still unanswered. My new doctor saw me in action today and is trying very hard to figure out what is going on. A quick dose of pain medicine instantly relieved me, so we are thinking that it is definitely some sort of discomfort. We are really looking forward to hopefully finding an answer because these "fits" have definitely led to some of my breathing difficulties. Praying for answers and a simple fix

Well, I am really starting to get used to my new place and have been resting comfortably. After being totally sedated and medically paralyzed for a couple of days, I am now off of those medicines and am able to wake up and move around. I've been very stable and definitely showing improvement. Thank you Jesus. Tomorrow is going to be a big day for me. The doctors are going to take me off the ventilator in hopes of being able to evaluate my throat to see what was causing my airway problems. We are praying that I am able to stay off the ventilator and go back to my regular oxygen cannula that I had before all of this happened.

On The Road Again

It's the Great Space Coaster, just kidding, it's my transport module or whatever you want to call it. Yesterday, I got airlifted to the University of Chicago Colmer Children's Hospital. Sunday night, things kinda got a little crazy and I wasn't sure what I wanted to do, but I decided not to waste all strength and decided to take some lessons from Pretty Boy Floyd. After some very scary moments, I finally nailed the knockout. On Tuesday, my doctors thought I was ready to come off the ventilator and tried to take me off. My lungs were ready, but it appeared that my esophagus was not. It seems that I now have some swelling and it made it hard for me to get enough air into my lungs to stay off the vent. Needless to say, I had to go back on the ventilator. This was a concern, because it is possible that some of my problems may not have been totally due to my lung disease, but possibly due to some airway obstruction. I've know for a ccouple of weeks that I had a small weakness in my throat, but it wasn't thought to pose any eminent danger. This weakness may have grown and caused the swelling or the ventilator tube may be the culprit. One way to overcome airway obstruction is to place a tracheostomy, which is a small hole inserted into the neck that would allow breathing through my the hole, thus bypassing the airway obstruction. It was decided that I needed to be evaluated by some specialists at U of C to determine if this was the case, so up, up and away I went on the helicopter. My Mom is certainly glad that she chose the HMO this year or I might have to come home and sleep in the bed with Zoie. I have now spent my first night at the new hospital and I am stable and doing tolerably well. They have had to use some paralysis medicine on me because I am just not really wanting to have this tube down my throat. So basically, I'm chillin' and stay sleep most of the time. The doctors are waiting for me to improve enough to try to take me off the ventilator, so that the ENT (ear, nose, throat) docs can try to evaluate what is going on in my airway. It may happen as soon as tomorrow or early next week. We are excited, but nervous to find out what they see, but it may help answer some questions. I miss all of my Hinsdale family but they have over 190 nurses at U of C and my Mom says I am too young to settle down so I am looking forward to meeting some new ladies (wink, wink).

I Don't Like Rollercoasters!!!

When I first got to the NICU, they told us that it was going to be a roller coaster ride, and there is nothing untrue about that. Last Wednesday, I finally had my hernia surgery. It was a complete success. The surgeon said it was one of the most severe cases he had seen, but was able to complete the operation in a little over an hour and without having to put me to sleep. I began recovering well and was back to my regular oxygen level by the end of the day. Things were going extremely well until Friday afternoon. Over the last 2 weeks or so, I had been having what appeared to be some discomfort and would have episodes where I would cry and get so worked up that I wasn't breathing properly. Everyone had a theory about what it was but most people thought it was Colic or more discomfort due to the hernia. Well, these episodes began to intensify on Friday and everything went downhill from there. After trying multiple treatments to help me calm down, oxygenate better and rid my body of carbon dioxide, the doctors had to put me back on the ventilator. This is probably the worst thing that has happened to me so far. When I was tiny, it was a lot easier to take the ventilator. The last time I was weighed, I was 9lbs 14oz and this big boy does not like tubes down my throat. They have to keep me restrained and sedated so I don't pull it out so I am not really having much fun right now. I think that they are going to have to restrain and sedate my Mom soon. The doctor seems to think I am having some sort of post operative stress which is leading to bronchial spasms. They have increased my steroid dosage in hopes of relieving this and hoping to get me off the ventilator in the next few days. Needless to say, this has once again prolonged my homecoming. I'll make sure that I keep you updated on things but as always, please keep us in your prayers and we try to make it through what I am sure is going to be a very interesting week.

Things are looking pretty good these days. I had my television debut this week and I am feeling a lot better. I am 9lbs 3oz now and I am down to 2 liters of oxygen. My doctor says he will schedule my hernia surgery when I am under 1 liter to help minimize any breathing complications during surgery. So, we are thinking some time next week or very early the following week. After the surgery, I should be all set to go home in a few days if I am stable. My grandfather told my Mom that she has been saying 2 more weeks for 2 months, so I am not going to say that this time. We'll just say......soon. I also want to say "welcome home" to two of my friends - Sir Ronin and Princess Camryn. I'll see you guys soon.

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