Day 69

So much has happened this week. Lately, I feel as though as soon as I feel good about things, something goes wrong. I hate that I am afraid to feel positive about the direction things are moving. As though as soon as I begin to feel relieved, it will all go south. It makes me so sad.

On Saturday, five days after his initial surgery, Wyatt's very first trach change occurred and was performed by Dr. Goudy. This was to ensure that the stoma (hole or opening in the neck where you insert the tracheotomy tube) formed a nice “track” and that the airway remained stable. However, after the very first one, the trach will need to be changed twice a week to ensure no mucus plugs become lodged within the trach.

This week, Mike and I have been doing lots of trach education. We have been doing all of his stoma care (or cleaning around the stoma) and changing the gauze around the trach like pros. We have also been suctioning via ballard and open suctioning, through the trach, which is the simplest by far. These steps in trach care are the easiest of what will need to be done for our boy.

Mike and I had to do our first trach change on Wyatt on Tuesday. Needless to say, I was petrified. It’s such a big step for a mother. I mean, I had just gotten use to the fact that he had one, now I had to be the one to change it. I mustered up all that I could and decided that I would be the first of us to do this trach change. I wanted to go first because I knew otherwise I would drag my feet. So, to spare you the details, they teach you that having two people for a trach change is best. So, Mike and I dove into our first change.

Let me just say that while the RN that teaches our classes tried to prepare us for your very first trach change, there is nothing in this world that could have truly prepared us for the actual event. I won't bore you will the details, but the process takes two people working as a team to achieve the change. The “helper” has one main job, and that is to hold the trach in place. The “boss” does all of the directing of the “helper” as to what needs to happen when. Once the team gets the change down, it will go smoothly. The first step generally is to loosen the trach ties. Of course, all of this occurs while the “helper” is holding the trach in place. Next, we check his neck for skin break down and wash and dry the area. We then prepare for the actual change. Theoretically, with perfect precision, the “helper” removes the trach, the “boss” puts the new one in, removing the opterator, the “helper” puts the vent back on, the ties are secured and all is right with the world. However, this was our very first change. You can only imagine how things can go wrong.

Mike worked as my "helper" and I as the boss. Generally, one would think that as a wife, being the boss would just come naturally. However, in this situation, I would have been more than happy taking orders from him. So, we began the process of the trach change. No use in dragging our feet! We loosened the trach ties and washed and checked his neck. Ok, that wasn’t so bad. Now for the fun part. I counted to three and Mike pulled the trach and vent out. Now, this is the point when the trach goes in, opterator comes out and ties are tightened and all is said and done. However, once Mike pulled the old trach and vent out, secretions began to spew from the stoma. And not a little, a lot. Our educator had tried to warn us for this, but there is no way that she could have ever prepared us for this. It was like a volcano of grossness! Even though I was totally horrified, I then proceeded to put the new trach in, Mike put the vent back on, and then I proceeded to lose it. I am still not sure exactly why I became a blubbering idiot, but I did. I cried like a big 'ole freaking baby. I couldn't help it. It was so emotional for me. While the RN tried to soothe me, my sweet husband and “helper” continued to hold Wyatt’s trach in place. Remember, we haven’t finished yet and the trach ties are yet to be secured. I was a blubbering fool for a good five minutes while he held on for dear life. This was a dear life after all, my sweet innocent Wyatt’s life. Somehow I managed to gather myself enough to be able to remember that Mike was still holding on. We secured the trach ties, Mike released, and again, I lost it.

There is something very taxing on the soul when it comes to a task such as this. As a parent, you just want to make it better. When children fall and skin their knees, a simple band aid and a kiss is all they need. However, when you are the person responsible for making sure your child's airway is changed, it becomes the weight of the world on your shoulders. You become their lifeline, so to speak. And while you are more than ready, willing and able to be this lifeline, it doesn’t make the emotional aspect of it any easier. The gravity of knowing that if you don’t put this airway back in quick enough, or correctly, then he can’t breathe. It’s so totally overwhelming.

On Wednesday, we had more trach education and this time it was Mike’s turn to become the “boss”. Therefore, my job was that of the “helper” and to hold the trach. When we began, I complained that his trach was slippery from the secretions from his mouth. We wiped them the best we could and proceeded. Mike wanted to sit Wyatt up so that he could check his neck. During this process, I could hear air that wasn’t there before. I told them that I thought the trach was already out. They assured me that it was ok. I checked his stats and they were dropping, fast. Then, the trach came all of the way out, on its own, and again, I freaked. Of course Mike put the trach in and all the stuff he was suppose to do, but I bawled like a baby. I felt as though I had done something, as unintentional as it was, to endanger my child. Again, our educator had to calm me. She reassured me that I did a great job and that I was the one that thought it was out in the first place. She said that I was correct to check his stats and that it was great that I was the first to catch it. However, none of these things could ease my guilt.

Thursday morning, our educator wanted Mike to go again. She must see each of us do a trach change twice and Mike was unable to come on Friday due to work obligations. I will not go into details about this trach change. Basically, because it went off without a hitch. However, when it was all said and done, I cried. Of course I am emotional as it is, but having my son’s very breath in my hands is just more than I can take at times.

Friday I did yet another trach change, with everything going smoothly. And believe it or not, I didn’t cry. I know as time goes on that it will get easier and eventually, it will just be a part of our life. I will be able to change it with one hand tied behind my back. But right now, the fear is consuming my very being.

Also this week, Wyatt has been seen by an endocrinologist. Apparently, because of his erratic feedings while here, his bones are susceptible to fracturing and breaking. Great, right? Anyway, all in all, we are still waiting to see how his blood tests look in order to find out what supplements Wyatt will need in order to get his bones back to where they need to be. They have reassured me that once he gets these supplements, he will be fine.

On a lighter note. When Wyatt’s trach was put in, it was cuffed (the inflatable balloon on some tracheostomy tubes). However, since surgery they have taken out all of the fluid keeping the cuff inflated. Actually, this was done very quickly after; maybe within 3 or so days. The cuff keeps air from escaping around the trach. This is the reason that you can’t hear someone with a trach (without a Passy-Muir Valve) is because air must pass through the vocal cords and with a trach it cannot. Anyway, without giving you a long lesson (which may or may not be exactly accurate), suffice it to say that cuffed doesn’t allow air to pass through the vocal cords and uncuffed does. Anyway, this week I have been able to hear Wyatt! Such an amazing feeling. Now, mind you, it wasn’t like it was before. It’s not as loud or pronounced, as it once was, but I definitely got to hear him. It’s nice to know that I won’t have to go totally without that. Of course, I cried!

On an additional light note, my son has found his “boy” parts. I am not stupid and I know that every baby does it. However, I didn’t realize that it would happen so quickly. I went to his bedside yesterday and found his hand under the blanket. When I removed the blanket, there it was. Of course, as his mother, I laughed. It feels so good to see him reach milestones, even in this hospital. Through all of this, all I have wanted is for him to be “normal” or as close as possible. I now realize that the normalcies that we can see are these milestones, no matter how small they are.

While I am on a roll, I want to tell you what Dr. Cutrer said this morning. Let me say that we love Dr. Cutrer. He has THE BEST bedside manner. Now, mind you, we have had some incredible doctors with great bedside manners, but Dr. Cutrer has just been so wonderful. Anyway, this morning in rounds (which I have learned to always be a part of) he made a statement that made me laugh out loud. Our nurse, Misty, asked him if they were going to remove Wyatt’s pic line today because they aren’t using it at all. His response was “No. Wyatt’s a hard stick and I am a wimp.” Seriously? Is it just me or is it funny that a PICU doctor is a self proclaimed “wimp”? Anyway…..

There has been so much this week and I feel like I could talk about everything for pages on end, but I realize this post is very long. I promise, I will try (please note try) not to go as long as I did this time before I update you. In the meantime, please pray and send positive thoughts that I gain more confidence in taking care of our boy. It’s so overwhelming and I feel unsure at times. I know that I will feel better about things once I am home and “in it”. But right now, I am just really scared and timid.

Things I am thankful for.

Friends and family who are totally selfless. You all know who you all are and I love you all so very much.

Pie in the Sky Pizza. They have chicken alfredo lasagna that makes me drool just thinking about.

Nurses who share their personal stories of life in the PICU. I won’t go into detail or share their story, as it is theirs not mine, but Angela and Heath have helped me more emotionally than one could ever dream. For that, I am eternally grateful.