The last two weeks have been pretty interesting and I have finally made some progress. My parents had another one of those dreaded meetings, but this time, it was a little better than the last two. As things had seemed so bleak before, we now have some indication that my heart may actually be able repair itself some. The last test showed some changes that had my doctors say that they were encouraged by what they saw. I know by now, you all know how cute I am (who could resist these big cheeks), so it's no wonder that I have picked up yet another girlfriend. There is this really awesome pediatric doctor who has taken an interest in me and has been doing everything that she can to try to help me. She's used to dealing with us older babies and I think she has a thing for me.....lol. Many of her suggestions have actually helped with my progress. She challenged me to wean my oxygen down under 60% and I was able to do just that. One of her suggestions was to try putting me on my belly more and for reasons way too complicated for me to explain on here, it has helped tremendously. Yesterday was supposed to be the end of my 2 week paralysis, but everyone decided that it would be beneficial to go for another week or 2 to see if we can maximize the progress that I've made. We realize that it is going to take a while before I am fully recovered, so we continue to be patient and pray for healing.

The progress that I have made is the best Christmas present that we could have ever asked for. I have my tree up and my Christmas music playing and am looking forward to a great celebration on Friday. Happy holidays to you all and PLEASE be sure to keep me in your prayers. Thanks so much.

After what seemed to be forever, we finally got the results back from my ECG test. The cardiologist says that my heart thickening has not gotten worse over the last two weeks. We were praying for improved but will definitely take no change over worse. They are going to go up on one of my heart meds to see if that helps and repeat the test in a week. My new pediatric doctor also suggested keeping me in a paralyzed - sedated state for 2 weeks to give my heart a rest and allow my oxygen settings to be weaned on the ventilator. She suggests that if we can get the oxygen level down, it will give the lungs a better chance to grow new healthy lung tissue, which in turn will alleviate the stress on my heart. It sounds like a plan, so we are going for it. Our motto these days is "if it doesn't hurt him, let's try it." This paralysis thing only hurts Mommy because she can't see my big, beautiful eyes, but she'll be ok.

On a side note - I know, I'm a little chunky. It's the steroids, I'll grow into it...lol.

Things have been coming along pretty well since the dreaded meeting. As my parents refuse to give up on me, I have been seeing a lot of different doctors to make sure everything is being done to help me. Today, I am supposed to be having my heart looked at again to see if there has been any changes since my last ECG test. My mom sought out the GI docs to see if they can make sure this colic thing is indeed colic, so they are also going to be doing some more tests on my digestive system. I had a pretty scary day yesterday when a pretty thick mucus plug got stuck in my trach. Luckily, my nurse was quick on her feet and got the right people to help right away. Needless to say, this all happened right as Mom was walking in. Poor Mommy. So I am not sure that I will have the tests done today, but I am sure it will be this week. As soon as we know more, we will be sure to let you all know.

I am sharing a picture from September at the request of my Auntie Erica. She fell in love with it and thought you all should see it. It is a priceless display of how much I love my Mommy and she loves me (love you too Dad).

It's been a long 2 weeks and so many things have happened during this time. I am over the respiratory infection, which is a good thing. After being in the hospital for 200 days, my parents had a family meeting with the medical staff to discuss my progress and long term treatment plan. Unfortunately, over my little lifetime of struggling with my breathing problems, my little heart has been working so hard to keep me oxygenated. As the doctors put it, "it's a race between my heart and lungs. Either my lungs have to get better before my heart gives out." I have developed what is called right ventricular hypertrophy (a thickening of the heart muscle). This was pretty devastating to hear, but we have not given up praying. The doctors say that my condition is moderately severe and their prognosis is not very promising. They are doing everything that they know about to help give my heart a break, but they cannot promise anything. The nurse told my Mom to cross her fingers, but my Mom told her to uncross her fingers and put her hands together and PRAY! So that's what we are doing and that's what we are asking all of you to do for us.

At Least It's Not Swine Flu

Well, the one thing my parents have been worried about happened, I'm sick. I caught a respiratory virus called Para Influenza. It's an upper respiratory infection and has caused me to have a lot of secretions and of course, a hard time breathing. The good thing is that I am now in an isolation room, so hopefully it will help me stay away from other outside germs. Bad news is that I had to be paralyzed again so that I can let the ventilator breathe for me without me trying to do it on my own. I was working so hard and I wasn't getting enough carbon dioxide out, so I need to take a rest. They should have me off of the paralysis meds by Monday or so and hopefully I can get back on track. Overall, I am still doing pretty good and continuing to pray for better health.

So, it's been a busy couple of weeks for me but things are going pretty well. My incision is pretty much healed and I have had the trach tube changed a few times with no problems. I am adjusting well and was even able to take a few bottles. I've continued to ride the roller coaster as it seems that my gassy fussiness is continuing to prevent too much weaning on the ventilator, so we are just trying to ride this colic thing out. We've read and heard a lot that colic usually gets much better by 3 months, so we are praying that it will be better for me soon. I am breathing pretty good, but my CO2 levels continue to skyrocket and then magically go back down on their own schedule. Because my little heart has to work really hard to oxygenate my lungs, it is causes a little thickening on the right side. We are not going to worry about it too much right now, but definitely have one eye on it. I am getting some medicine to help relax the heart muscle, so it doesn't work so hard.

It's really hard to say right now but the doctor told my Mom to hope for Christmas, not Thanksgiving.

Today was day 5 after my trach surgery, so the ENT came today to do my first trach tube change. The incision is healing well and everything is going according to plan. The tube generally gets changed once a week. The trach hole is kinda like an earring hole, so it takes a few days for it to heal. While the hole is fresh, it is important that the tube not be taken out so they have had me back in that "coma like" state that my Mom hates. Tomorrow morning, they will discontinue the paralysis medicine and begin weaning the sedation medicine, so I can wake up and check out my new self. After about 2 weeks, it should be almost completely healed. No matter what, I heard my Mom tell the nurse that I am wearing my Halloween costume Saturday no matter what. Bet you guys can't wait to see what I am going to be...lol. I will be sure to post pictures.

Right now, we are kind of in a holding pattern until I am fully awake and then we will start to evaluate things. Next steps will be to try to wean my ventilator settings down to either get me off altogether or to move me onto the ventilator that can be used at home. We also will start to work on my bottle feedings again and figure out if I still need this g-tube. However long that takes will determine how long I have to be here. Everyone keeps saying I am the boss of my destiny but that seems like a lot of pressure on a little guy like me. I'll be sure to do my best. I know my Mom was hoping by Thanksgiving, but who knows. You'll know as soon as I know.

The New Me

Today I had the surgery to place my trach and my Mom got to see me for the first time with no tape on my face. She says I am even cuter than she thought. I'm a little out of it on this picture and will be for the next few days as the incision heals. Things went well during surgery and I am resting comfortably. I did not get the g-tube because the general surgeon wanted my vent settings to be lower. If I am able to bottle feed well, we will most likely not get the g-tube. We really wanted to only have one surgery, but I am sure you all know by now that things don't always go as planned in the NICU. The surgical team came and got me at 3:15 and Mom and Dad were able to see me by 5:30, so things went fast. I know there are probably a lot of questions that we don't have the answers to yet, but we promise to keep everyone updated on how things are progressing. Thanks for all of the prayers that helped get me through surgery today!

Get It or Forget It Day

Today was a big day for me. My Mom was calling it sink or swim day, but I thought that was a little harsh way to put it, so we changed it to get it or forget it. Either I was going to get a trach or forget about the ventilator and breathe on my own. After being on the ventilator for a month, my lungs were just not ready to forget the comfort of mechanical ventilation. My doctors and nurses tried to give every chance to breathe on my own, but it was very hard for me. We are basically faced with 2 options, either continue to sit in the hospital until I can successfully wean off the ventilator or have a trach placed so that I can go home and wean off the ventilator at my own pace. Since waiting could possibly take months, we chose the trach.

So what does this mean? The ENT doctor is going to put a small hole in my throat and insert a tube into the hole (kinda like an earring, but bigger). The trach tube can be hooked up to a ventilator or an oxygen tank. This set up is more conducive to a home setting, as opposed to having the ventilator tube in my mouth. Being at home will allow me to thrive and start to enjoying being a baby without the constant interuptions in the hospital. The vented trach allows more mobility and I will be able to do most things that babies do. The trach is not permanent, but will be kept until my lungs can grow enough healthy tissue to allow me to breathe on my own. It's really hard to say how long this will be at this point. It could be a few months or a few years. Good news is that I won't have any more of tape on my face, so you can start to see how cute I really am. I am also going to get a G-tube, which is a tube placed in my belly to allow for an alternate way to eat in case I am not able to bottle feed. Some chronically vented or trached babies have trouble eating, so this will ensure that I am always able to get the nutrition I need to grow my lungs.

It's been a long road for me, but this will be what I need to finally get home with Mom, Dad and Zoie. My surgery will be scheduled for Thursday or Friday or very early next week. If everything goes well, I could be home in a couple of weeks - just in time to celebrate Thanksgiving. I will be sure to let you all know how things go and ask for your continued prayers as we prepare for surgery.

I am going to give a quick update and then follow up this afternoon. I am all set for extubation today. We are waiting for the ENT doc to get out of surgery. The plan is to put me on high flow and see what I can do. If I can't handle it, then I will most likely get the trach. Praying for successful extubation. 

Still Going...........

The last week has been pretty good for me as I continue to move in the right direction. I have been able to slowly wean on the ventilator and made a big move today to what they call the "weaning mode" on the ventilator. I won't go into the boring details of what that means because my Mom says people don't like when you act like a know it all. So far, so good with the change today. I took a few more tests last week to help confirm this colic thing and passed with flying colors. The EEG shows no signs of seizure activity and the GI contrast study shows no blockages or abnormalities in my intestine, excessive acid reflux or hernia by my diaphragm. So it's looking more and more like colic, but let me tell you, it's kicking my little butt. I started my physical therapy again and have been getting out of my bed to hang out in my new bouncy seat. I saw a new pulmonologist and she says that she thinks that I would not need to get a trach to deal with my lungs problems, only if they there is some type of airway problem. She believes that we should be able to get back to where I was before with my breathing, but that I just need time to recover. She recommended some changes to some of my medicines and treatments and my doctors have been following her plan. I'm still eating well and now weigh 10lbs 8oz. So that's about it for now. More updates to come as they happen.

Steady As We Go

Over the last week, I have continued to get better. Although not as fast as everyone hoped, I have continued to make small weaning adjustments on the ventilator. I am still experiencing the episodes of pain that lead to difficulty breathing. I have about 2 or 3 of them a day and they last about 15-30 minutes. They always seem to happen when I am passing gas and/or having a bowel movement. Because my doctors have not been able to find anything from the tests that I have taken over the last week, they are thinking that it may be be colic. The symptoms of colic are normally harder for the parents to deal with than the child, but it is a very difficult for a kid with breathing problems. The good news is that colic goes away. Colic is a sort of mysterious condition that doesn't have a test. It is diagnosed by eliminating all other possible conditions. I am going to have an EEG (electroencephalogram) test to rule out the possibility of seizures. My doctors don't think that I am having seizures, but they just want to be sure and be able to cross it off the list of things that I don't have. The episodes are most concerning to my Mom because she thinks they are really what led to me being back on the ventilator. Before the surgery, I was able to recover from the fits, but after the surgery I didn't have enough strength to recover. She's worried that if I come off of the ventilator that I might have a hard time recovering if the episodes continue, but is prayerful that I now have my strength back to withstand them. My doctors are going to get together to try to figure out how and when they will be able to get me off the ventilator. I'll be sure to let you all know as soon as we figure anything out. As always, thanks again for all of your kind words and actions, thoughts and prayers. They really have helped get us through these difficult times.

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.

Kyle's Commercial

Well, I am sure most of you know that I am not home yet, but just wanted to update everyone on how things have been going. Unfortunately, I had a set back the weekend before my hernia surgery, so it has been postponed. My oxygen requirements increased and I went from .3 liters to 4 liters overnight. When all was said and done, I was up to 8 liters. My doctors quickly began testing and treating me for everything under the sun. I quickly began to recover. They are not positive about what caused this but are proposing that it came from either an infection, an aspiration (basically, milk somehow got into my lungs) or inflammation. They treated me for all of them and this past Friday, I had a procedure called bronchoscopy. They scoped my lungs to collect cells to test to see if they could find the cause of my problems. The procedure had a risk of me having to be ventilated if my lungs were not strong enough to tolerate the sedation, but I was a big boy and made it breathing on my own. We should get the results some time this week.

While I was sick, I developed pulmonary hypertension which was a little scary, but a little nitric oxide and Viagara helped alleviate that problem. Yep, Viagara (these nurses are HOT...just kidding). The Viagara helps to relax and widen the blood vessels so that blood can flow more easily to my lungs. The increased my steroid dose and stopped my bottle feedings, but I think they are going to restart my bottle feedings today. Not to worry, I am eating really well and tipped the scales at a whopping 8lbs 6oz last night! I am 17 weeks old today.

I had another eye exam, and my eyes have continued to improve. I am now back to Stage 1, which is great! I will have what should be my last follow up in two weeks, but things are looking good. My Mom and doctor think we jinxed things, so we are not going to speculate about my homecoming anymore. I just want you all to know that I am doing much better and am well on my way to recovery. Please keep me in your prayers and I will be home before you know it.

Hollywood, Here I Come

Well, I guess when everyone tells me how cute I am, they really mean it. The Adventist Hospital group was filming some commercials and they asked my Mom if I could be in them. The camera crew came out and taped me for like 3 hours and I had a great time. The local commercials will be shown on channel 9 (WGN) starting next month but I will be sure to let you all know when I get more details. Things have been coming along well and my Mom told my doctor that she was taking me home next week, so we'll see. I am having my hernia surgery this coming Monday, so please keep me in your prayers. Hopefully we will be good to go a few days after that. I am up to 7lbs 5oz. I'll have my last eye test this week. I've been back and forth with my bottles, but I am close to taking 8. My doctor said that it is a little harder for me because my lungs are working so hard. He likened it to trying to drink a bottle while running a marathon.