Caden has had a rough week. We have not seen a 24 hour period without reflux in over 10 days now. He has averaged about 4 reflux episodes per day since March 30th. His little nose is raw from all of the suctioning that is required to keep his airway clear.
I have been up with Caden since about 3:30 AM. Sherry was up with him until then last night. This is a typical Friday and Saturday night routine for us. The only difference now is that we both felt confident enough in the past to dose in the guest bedroom as long as we had the baby monitor volume turned up.
Sherry will get to go to church this morning while I stay home with the boys. She is planning on taking the afternoon as a break away from the house. I took Riley to church on Saturday evening. He loves going to his class. You can ask him now what he learned today and he will say, “I learned about Jesus.” Sherry stayed home with Caden since he has not been able to ride in his car seat without refluxing in over a week.
Sherry took Caden and Riley out on Friday to go about a mile down the road to the drive-thru pharmacy. Caden refluxed while she was sitting at the drive-thru window. Sherry immediately interrupted her transaction to suction Caden. Sherry said that the young man at the drive-thru window turned white as a sheet when he saw it happen. She turned back around to complete the transaction and the man could only say, “Wow! You have your hands full.”
I had to stopped writing for a few minutes during that last paragraph. Caden refluxed without any warning whatsovever. I was sitting right next to his bed while writing this posting. He did not even move, grunt, or anything before it happened. All I heard was a sound that resembled that of water being poured very slowly from a cup. I jumped up and saw a stream running down Caden’s face from his right nostril. On this particular occasion he was about 90% done with his feeding. I turned off his feeding pump with my left hand as I lifted it from the suction pump power switch to get a grip on his head. My right hand was simultaneously reaching for the suction hose and pulling it towards his face. Even though he looks at you with that “please help me” look, he will almost always fight when the suction hose it placed up to his nose. After I suctioned long enough to clear his airway, I used a syringe to attach to his feeding tube so that I could pull out the ounce of food remaining in his stomach. This has been a typical scene for me or the nurse on duty between 5:30 and 7AM this week. This is the only time when a reflux spell has become predictable in recent days.
I hope the description was not too graphic for you. Sherry and I were just talking about the pharmacy incident yesterday and how it is impossible to describe what it is like when Caden refluxes. Dealing with it has become second nature to us even though it causes us to get some pretty weird looks in public. We try to be discrete, but you don’t have time to find a restroom. We sit at the back of the church right next to the door when we take Caden. I know the people around us have wondered what was going on when I jump up with Caden in one hand and the suction machine in the other and dash out the door. The most dangerous situation for dealing with he reflux is while driving with no other adult in the car. You have to pull over immediately. You don’t have three minutes to wait until the next exit. You have to pull over in the same fashion as if you had no other choice due to running out of gas. We just get out of the flow of traffic and proceed to clearing Caden’s airway. Sherry tries to schedule Caden’s appointments near the beginning or end of the day or around lunch time so that I can ride with her without having to take a day off from work. That does not always work out and she ends up traveling by herself with the two boys quite often.
I had to take another break. Riley woke up crying with an extremely wet diaper that required me to change his bed linens. This is one of those situations where you just remove whatever residual is in Caden’s stomach with a syringe so that you can tend to the other problem without worrying as much about Caden. That way if Caden even tries to reflux he has nothing that will come up and get in front of his airway. You can’t leave Caden without anything in his stomach for very long or he will get behind on his feedings for the day. He is getting a tad bit more than is required to maintain his current weight. Since we can’t measure how much he looses to a reflux spell, we really don’t know how much he is retaining, but I guess we will find out if it is enough when he gets weighed again. The output on the other end is pretty good so we nor the doctors are worried about dehydration or malnutrition.
I am going to close for today. Once again, I apologize for the graphic descriptions. It is hard to visualize and you would not want to voluntarily see it anyway. Please keep this little boy in your prayers. I will keep you posted on his progress.
Thanks for checking on Caden.
All our love,
Hank, Sherry, Riley, and Caden