raising hunter

Yesterday we took Hunter to the UNM Children's Hospital for his Microlaryngoscopy and Bronchoscopy (BLM), the doctor was looking for something that was maybe blocking his airway causing the gurgling noises he makes (you can read more about this in previous posts from Dec. 2010). She thought she would find either a cyst or maybe a hemangioma and would just need to remove it. We waited it the waiting room and it had been past the 45 minute mark they said it should take...I know it always takes longer but still the not knowing what killing us! Finally the nurse came and said everything went well the doctor will be out in a minute to talk to you. So at that point we were quite relieved and just waited the additional maybe 10 minutes for her to come out. She told us that his airway was about 1/5 of what a baby his age should be. She had no idea how he was so happy and thriving so well with an airway so tiny. She told us part of the airway was webbed and she could cut it but then they run the risk of it it scarring over his airway. The other alternative is to do a tracheotomy that way he would have a secure place to breath out of and then at a later point figure a way to make his own airway bigger. This would put him in the hospital recovering for about 7-9 days. She doesn't know how long he would have the trach in, could be 6 months or up to a year or two. Either way the goal is to fix his airway(make it bigger somehow) and get the trach out. She told us this was going to be a long process.  We never imagined it was this big of a issue, we thought we there for a small procedure and he would be able to go home the same day or maybe overnight. We felt we had no option, but we still asked for a few minutes to think about it. I went into shock at first, not believing what I had just heard. What this real? How did this happen? Why my little boy? What did I do wrong?

After tears and talking for a while we gave them consent to do the put the trach in his neck. After she left the room, I felt terrible. I felt like I had just betrayed my little boy. He came to the hospital happy and calm, and is now on a operating table about to have a hole cut in his throat. The worst part is that you can't explain why this is happening to him. He was in there another hour I think when the doctor told us he did fine and once they get him over the to ICU and stable we can see him. After what seemed like eternity a nurse told us we could come on back. We were about to walk into the room and saw him obviously struggling on his bed with nurses and a doctor around him. We were told they were just having trouble getting him stable, and that we could stay or leave. We went back to the waiting room for almost an hour, so far that point was our lowest. I tried not to think the worst but not hearing anything make my mind go all over the place. It was heart wrenching. I wanted to see him so bad it was almost unbearable.

Finally, Jeremy went and asked a nurse if we could see him. They brought us back and we  got to see our baby. What a relief that was. To be honest I was scared to see him at first because I didn't want to see him with tubes everywhere in a hospital bed. Once I saw him though, the biggest sigh of relief came to me. His adorable tiny little face looked as gorgeous as ever. They explained to us that his lungs started to collapse after coming out of surgery and they had to put tubes in his chest. They think that after taking him off the ventilator in the OR and putting him on a new one in the ICU he probably got agitated and wasn't handling it well which caused his lungs to collapse.

Once some of the medicine was wearing off and he was waking up, his eyes opened and looked at us. I could tell he knew it was mommy and daddy. One of the hardest parts at that point was when he started to feel the pain again and he was crying but you can't hear him because of the trach, and I about died when a little tear rolled down his cheek. He just stared at me as if he was saying "mommy help, I hurt"...I felt so helpless for him, I wanted to switch places with him so bad it hurt. Later in the day he was getting fussy and we could tell his was feeling his pain pretty intensely, so the nurse gave him some fentanyl(a pain drug), within a few seconds he started to turn purple and bluish. The nurse immediately called for help and about 8 nurses and doctors rushed in. We stood outside the room. I thought this can't be happening, I was  about to lose it. Jeremy kept telling me it was okay, he's going to be fine. Within probably less than a minute, we saw him turn back to his normal color. They said he just had a bad reaction to the drug. They decided to keep him on Tylenol and morphine. He was calm and content quickly after. Wow, another scare like and I don't know what I will do.

Since then he has been a little trooper and is doing as good as can be expected. They want to slowly wean him off of meds. We tried to give him a bottle since he had not ate in quite a while, but the new feeling of swallowing was strange to him and he was having a hard time. So to get some food in his belly, he now has a feeding tube. We are going to try and give him a bottle again tomorrow so he can get that feeding tube out. He also had a x ray today and his lungs looked good. He will get another one tomorrow and if they still look good, most likely he gets the tubes out! 

We are hanging in there as well as can be expected. It's the hardest thing I have ever had to deal with in my life and I still think I am dreaming. I just can't wait to have Hunter back at home, sleeping in his own crib and enjoying life again. As hard as this is, on the flip side, if he didn't have this procedure, his airway would have been a ticking time bomb. If he were to get sick and his airway swell even a little bit, it could close it up. It would be very scary to have to call 911 for my little boy. He will still be able to crawl, and play and enjoy life, depending how long his trach is in, he may have a speech delay. However, he is so young and kids are so resilient, I know he will be just fine. By the time he's a little older and walking and talking, he won't even remember all this. So that makes me happy. Of course Jeremy and I will remember this forever....it's sure taught us in a short time how precious life is and to appreciate every single day. We love you Hunter, and we will all be in this together getting you feeling better in no time. You have soooooooo many family and friends that love you. 

Hunter before his surgery

Hunter resting after surgery