From one rare thing to the next...

I did not mention in my previous blog what exactly botulism is. It is a very rare toxin that is ingested which causes paralyzation. It starts in the GI tract, which is why Brayton was constipated first, and works its way out. It can be deadly if not caught because it paralyzes the respiratory system whcih is why Brayton struggled to breathe. The neurologist told us he has only seen one case of botulism and that was in 1990. Then all of a sudden, there were 2 in infants! The botulism in Brayton was confirmed a couple weeks after his stool was sent to California. I am thankful doctors got the medicine here quicker than that so Brayton could start to heal.

After Brayton got off of the ventilator, we moved up to a normal room. He still had an NG tube down his nose because he wasn't eating and had lost a lot of weight. He was still struggling to breathe and his oxygen levels continued to drop. I was constantly watching his monitors. Not only is there a monitor in the room, but there is one outside the door, and in the nurses station. Every time it would beep, I was on my feet looking to make sure he wasn't blue. One day, it kept dropping and we ended up with the resident, attending, and all of the students and nurses in our room watching him. They ended up moving us closer to the nurses station so Brayton could be monitored more closely.

Eventually, the resident doctor following Brayton insisted on having ENT, ear nose and throat, doctors come and look at him. Brayton was still struggling to breathe and his cry was so hoarse. They did a small scope in his mouth to make sure his vocal cords were ok and not damaged from being intubated. Vocal cords were fine. Praise God! Otherwise, Brayton would never be able to talk. The ENT doctors schedule Brayton for his first surgery to run a scope further down his airway to see if it was swollen from being intubated for so long.

On a Tuesday, we went to the surgery floor. There we met another doctor who cares more than anything: Dr. Reed.  He told us they were looking for swelling and scar tissue. If it was bad, they would put in a balloon to dilate the airway so he could breathe better. He said that worse case scenario, he would have to put in a trach, but that was very unlikely.

Luke and I waited in the waiting room thinking Dr. Reed would find some swelling, know how to fix it, and we would be done. When Dr. Reed came out of surgery, he took us to a small conference room and said, "It is bad. I have never seen anything like it." Which is just right for us, because first we have botulism that no one gets, now we have something else. He explained that the cartilage in Brayton's airway was broken. There was a huge hole in it. He showed us the picture and I am not sure what an airway is suppose to look like, but this looked bad! Our only option was to put in a tracheostomy. They did it while Brayton was still in the back. The next time I saw my son, he was breathing out of his neck.

We left our home on the regular floor to go back to PICU for a week to make sure the trach hole healed. Once again, we couldn't hold him until it was well enough that we wouldn't mess anything up. Then we received another blessing from God: Brayton started smiling a true smile and he hasn't stopped since!

The resident and medical students from the upper floor came to visit us several times. One med student brought us a crocheted hat that his wife made for Brayton. He had told her about our son and that Brayton had made him decide that he may want to go into pediatrics. This hat will always be a reminder to me that there is a bigger picture. One thing happens, and leads to another.

After getting the trach, I had to go through 2 weeks of training. They had to train 2 people so my mother in law, who decided to stay home and keep Brayton while I worked, trained with me. We learned how to clean the trach, how to change it out, and what we could and could not do. We have to clean the trach twice a day and change it once a week. We have a humidifier that hooks to his neck, an oxygen monitor, and a suction machine at home. We learned how to use the machines and what to do if the trach gets stopped up.

One thing that is important to know is that Brayton can't breathe without the trach at all because his airway is so messed up. When we change the trach, he can't breathe for those few seconds. If the trach gets stopped up, he can't breath. It is scary and we are constantly watching him and making sure he is ok.

Before we could leave the hospital, Ms. Jean and I both had to change the trach out twice. We both did it without any problems and we were sent home with all of our equipment and knowledge of what to do. We have an ambu bag so we can give Brayton breaths if we need to. There is constant worry and fear that something may happen. It is exhausting.

We have to be careful in the tub because if anything gets in the trach, it goes straight to his lungs. We can't got to dirtbike tracks or the beach. We can't have candles or spray anything around Brayton because he will breathe in the fumes. It is a constant thing we have to monitor.

We will hopefully get the trach out one day. Dr. Reed said that Brayton will probably have to have a major surgery to fix his airway, but this can't be done until his is 22lbs and about 1year old. He is only 13lbs now so we have a long way to go. The only thing that keeps me going is knowing the trach will eventually come out and that other parents have gone through this for years. Some kids have trachs their whole lives. I just keep telling myself that if they can do it, so can we.

The reason Brayton's airway has broken cartilage is because when he was intubated, the doctor shoved it in and it broke the cartilage. Many have asked why we do not sue the doctor. The reason is simple: he saved my son's life. Had Brayton not been intubated while we were at the hospital back home, he would not have started back breathing, and therefore, he would not be here. I am thankful for the doctor who saved his life. Besides, if we sued, he would be terrified to intubate another kid and that would cause that child to die. The doctor was doing his job and although the world says sue, my heart tells me different.

Now that we have the trach, Brayton has fully recovered from botulism. He is smiling and happy ALL the time. We can't go many places because kids with trach get sick easily. In fact, just a few weeks ago, we were in Batson again for a few weeks with a viral infection. Every little illness puts us back in the hospital or doctor's office.

This past Monday, while changing the trach, I couldn't get it back in. Brayton turned blue until I got it in and he was able to breath. I almost had to bag him and call the ambulance. As soon as I got it in, he was fine, but we went straight to the doctor to make sure he was ok. Dr. Shann said this would not be the last time this happened and just to remember that even if Brayton passes out, all we have to do is give him some breaths. He also said that he would be glad to change the trach out for us. So next time, we are letting him do it. I am terrified of messing up now. But he assured me that I did everything right.

We take Brayton once a month for a scope procedure. Brayton is put under anesthesia while doctors check to see how his airway looks. We are exhausted physically and emotionally. However, all it takes is one big smile from Brayton, and the problems we face seem insignificant. If he can make it through everything, then so can I! God has truly blessed us!