Caden is doing good. While Caden is doing good at the moment, we have gone through a rough couple of days since leaving the PCICU. Caden now has an upper respiratory infection. This causes even more secretions than normal. He is already on an antibiotic to treat the infection and that should clear up in a reasonable amount of time. The past two days have also involved some tests. Yesterday we took Caden to see the ear, nose, and throat (ENT) doctor. They ran a scope in to look at Caden’s vocal cords. They took some pictures and found that Caden has a little bit of damage or it may be a defect on one vocal cord. This causes him to have a little weak of a cry and it also causes him to have a harder time sealing the airway when swallowing. Today we took Caden down to get a modified barium swallow (MBS) test. This is a test were they give him some thick fluid from a bottle while he sits in front of an Xray machine that records a digital video of the fluid going down. Caden was not able to swallow properly. I believe that the term Disphagia is used to describe his condition. The muscles that are suppose to relax and allow stuff to travel down into the esophagus are not doing their job in sync with the swallowing process. The fluid, food, secretions, and saliva is never allowed to leave the throat and enter the esophagus. This causes Caden to collect these things in his throat and get gagged and he can even aspirate if the fluid is not suctioned out. All of this is linked in one way or the other to DiGeorge Syndrome. Caden does get a trickle of fluid down, but it is more by accident than on purpose right now. Those muscles do relax once in a while, but not when they need to with the swallowing process.
The next logical question that you must have as we did, “how is this swallowing condition treated?” There really is no cut and dry answer and their official answer for now is that a lot of research is being done on how to treat this on an infant. First we will have to wait up to three weeks in the hospital to get another MBS done. Another MBS will tell us if his swallowing abilities are improving. This may happen in less than three weeks, but there is some question as to how long to wait. Once the test is complete we will take one of two paths. We will begin to feed Caden by mouth if he shows that he can swallow. The other path is to get a feeding tube installed in his abdomen. This would actually be a little port on the outside of his tummy that we would have to hook a pump or syringe to in order to deliver food into Caden’s stomach. The last child to come through here with the same problem went home with the feeding tube. These tubes are usually required for several months or longer.
I have not left the hospital for more than three hours total in the past two days due to a concern for Caden’s care. I don’t mean to make it sound like the folks down here are not doing their job. They are doing an awesome job. There are kids lined up to get in here and unfortunately there are not enough nurses lined up to get in here. Caden requires a good bit of attention from someone with a suction tube to remove the secretions an other fluids from his throat so that he does not as a worse case scenario aspirate on them. The more usual outcome is that he will cough or sneeze them out onto his face, bed, or clothes. Then he is in just a yucky situation that takes a ton of his energy to get into in the first place. The energy is drained with all the struggling he does to get up a strong enough cough or sneeze to get the stuff out. In the PCICU, he was getting some pretty personalized attention. Hear on 7C he does not have a nurse sitting within a few feet of his bed at all times so they can not see when Caden is struggling with these secretions. Until today, no one really knew whether Caden was creating an obscene amount of secretions or if he was just not swallowing any of the normal secretions due to swallowing problems. The answer is sort of a combination. He does have an infection that is beginning to break up that adds to the normal secretions that collect and can not be swallowed due to his condition. Now, why have I spent so much time here? Well, I have had the overnight shift to sit with Caden to ensure that he does not use all of his reserve energy to get this stuff out on his own. Sherry came down yesterday and today in the morning to relieve me. We agreed on both days that I might need to hear the results on the tests since they are pretty big issues concerning how we will care for Caden in the near future.
There have been some changes in Caden’s care today. First we were relocated to a room closer to the nurse’s station. I am not sure exactly why, but it might be because when I did came back last night after being gone for three hours, I found Caden with a big gob of stuff on his face. I was so upset by the scene that I took a quick picture of him before cleaning him up. I had the digital camera in the bag that was on my shoulder. I told the 7C nurse practitioner (NP) today what happened last night and that I was so upset that took a picture if she did not believe me. I also told her that Sherry and I were planning on being here 24/7 for fear of finding those situations or worse again. Since that conversation and the swallow study we have moved to a room across from the nurses’ station and an order has been written to get Caden suctioned by a respiratory therapist, NP, or doctor as needed. The need is determined by us or his nurse. This only needs to be done a couple of times per 12-hour shift at the most right now. Sherry and I still do less intrusive suction passes ourselves when he coughs it up far enough to see. The secretions should slow down once the infection is gone. Then they will give him some medicine to help minimize the normal secretions. The only reason they are not using it now is that the medicine has a tendency to thicken the infectious secretions which are harder to clear out.
Riley visited once yesterday and twice today. He got to play in the atrium and visit with Caden. We all had dinner here tonight. Sherry and I are both staying tonight so that she can get a feel for the night shift. I am staying more to be with her than anything. Things are a little different at night since there are not doctors buzzing around and there tend to be less nurses on the unit. I believe they get as bad as a five-to-one patient to nurse ratio at times due to staffing.
I know that I write a bunch of information. This accomplishes several things. It helps get the facts out as we know them to those of you who care so much about us. It also provides a journal of sorts that Caden can use in his future testimony of what God brought him through as a child. The last thing that Sherry sees is that it has been somewhat therapeutic for me. I believe she is right. Writing these notes for you have given me a chance to sort out my feelings and present the information in a way that can give everyone a good idea of where their prayer needs to be focused. I have not always been as strong of a believer in God as I have become in recent months. I can not imagine going through all that we have been through in the past several weeks without God. I write a version of what we see and experience that includes a little cream and sugar. We have really joyous days as well as days when we struggle so hard with so many things. I want you to know that we are being blessed by help from so many people. Some things can be helped and there are a ton of wonderful people doing an incredible job of helping, but other things can only be helped through prayer and faith in God. I wish I could tell you all that is on my heart tonight, but I can not. I sit here with tears in my eyes as I try to sort out all of the things that I have had to deal with lately. An old friend told me the other day in an email that sometimes you just need to have a good cry in these types of situations. I think he was right. Today was a day when a cry seemed to help.