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.