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.

Shouldn't Be Too Much Longer

A couple of my doctors think they're funny guys and call me Sammy Sosa, but I have to admit these steroids aren't too bad. After having to go up on my oxygen some more, my pulmonologist decided that we needed to increase my steroid dosage a little to help accommodate my bigger size. Well, it did the trick because I am now all the way down to .3 liters of oxygen (yes, there is a decimal in front of that 3). I have continued to gain weight and as of today, I am 6lbs 5oz. My speech therapist gave me the green light to attempt bottle feedings at each feeding. I have been taking 6 or 7 a day, so I hope to be to 8 by the end of this week. The eye doctor came Friday and my eyes improved a little more. The blood vessels have usually done what they are going to do by this gestational age, so I should be good to go without laser surgery. I am going to see him again in two weeks for good measure, but the prognosis looks good. Dr. P told my Mom he is just about ready to give us an eviction notice and we promised him that we wouldn't be mad if he did. I'll be sure to keep everyone updated as we find out more, but God willing, I should definitely be home in the next 2 or 3 weeks.

Holy Weight Gain Batman

Another pretty good week for me (thank you Lord). As of today, I am 5lbs 12oz - I know, wow, right? I have to be honest, a couple of these ounces may be buildup because I haven't had a bowel movement in 5 days, but glycerin suppository to the rescue today. I feel sorry for whoever my nurse is this evening. My doctors are not worried about it, they say it happens sometimes. Mommy is a little anxious because she thinks it may be stuck in my little hernia. Although she thinks she is a doctor now, she's not really, so we'll take their word for it. The eye doctor came back last Friday and my eye test results improved, so he won't check again for 2 weeks and hopefully we can dodge having to get the laser surgery. I've been taking my bottle feeds pretty well and I am taking a bottle at every other feeding. My breathing is steady, but we did have a minor set back after I received my immunizations. I had a fever and wasn't feeling well, so they had to bump me up to 5 liters for a few days. I am back on 4 liters now, but they are going to extend my steroid doses a few days just to see if we can get some more improvement. I'm thinking it won't be too much longer now, but we're just taking it one day at a time.

Well, things seem to be coming along pretty well right now. I've continued taking bottles and working on my nursing skills. I'm up to 4lbs 15oz today and am now 17.5 inches long. I did a tad bit worse on my eye test this week, but we are praying that it will not change any more. It is still up in the air as to whether I will have to have the laser surgery. I passed all of my other tests, and have started getting my immunizations. My oxygen flow has been decreasing and I am now down from 10 liters to 4 liters per minute. I have been tolerating the decreased steroid dosage so far and have about another week before I will be totally weaned. Again, this is where my biggest test will come. We are very hopeful that my great weight gain will be beneficial to helping me pass this test. My Mom got to help give me a bath and I met my maternal Grandfather for the first time. He's pretty cool. I heard that the shower was a hit and I want to thank everyone for the cool stuff I got. Can't wait to get home to check it out.

Got Milk?

Great news! I was given my first bottle yesterday and I did pretty good. I was able to take 2/3 of an ounce before getting tired. I know it doesn't seem like a lot, but it is for me. They are now going to start trying one bottle a day. My Mom also started trying to breastfeed and I latched on pretty good for my first try. Things have been going pretty good. For the 3rd week in a row, there was no change in my eye test, so that means that it is not getting progressively worse. I also passed some liver screening test that I had to take. I am continuing with all of my therapy and have been gaining weight pretty good. I am up to 4lbs 4oz today. I'm really starting to fill out my clothes.

Speaking of clothes, the funniest thing happened on Sunday. I know most of you probably know how much my Mom despises the color yellow - long story short (childhood trauma, yellow coat, big kid = Big Bird, 'nuf said). Anyway, I had a nurse that was not so familiar with me and she didn't know I had my own clothes, so she put this yellow onesie on me - ha, ha, ha. I thought my Mom was having a flashback of being called Big Bird by those mean kids, because she looked shocked. Needless to say, the nurses now know Mommy doesn't like yellow. Well, that's about it for now. I have about another week before the steroids are scheduled to be done, so we'll see then.

Today makes 7 days off the ventilator and things are going well. I weighed in at 3lbs 14.5oz. I started seeing a speech therapist to help me get ready to start taking a bottle. This will be one of my next big tests. Although I love my pacifier, drinking from a bottle is a little more complex. It requires me to coordinate swallowing and breathing at the same time, so I have to get some practice with this. The therapist will help me strengthen the muscles I need. I'm also seeing a physical therapist now to make sure I am developing all of that hand/eye coordination and body movement stuff. My respiratory therapist told my Mom he saw me doing push ups, but I was just lifting my head up to see what was going on. Yeah, I know, I have a lot of therapists now. Everybody wants in on this, but they're cool, so it's cool. I know everyone keeps asking when I am coming home, but we're not really sure yet. There are so many moving pieces that right now, we can only estimate 4-8 more weeks. Things will largely depend on how well I am able to drink from the bottle and how well I am able to breath on my own once I am off the steroids this time. I will be sure to keep you all updated as things progress.

What a Difference a Day (or Two) Makes

I hope you all had a wonderful holiday weekend - I sure did. Once all of my new medicines kicked in, my little lungs did the happy dance. I managed to wean off the ventilator by Friday afternoon and I am back on the high flow oxygen. Things have been going really well with that. I think that I am officially a big boy now because I moved out of the incubator into an open crib and I got my first real bath yesterday. I also welcomed my Mom into real motherhood when she changed my diaper yesterday. I accidentally got her with #1 and #2, but she loves me so much, she wasn't even angry. I am doing so well, that I finally let my Aunt Jetaun come see me again (she cries too much, so Mommy banned her for a little while - lol). She and my Grandma Paula got to hold me too. God is sooooo good. I added some pictures so you can see some of my excitement from this weekend.