Ah, March…one day closer to St. Patrick’s Day, one day closer to spring. More importantly (to me), Zack made it through the entire month of February without being hospitalized! I am so excited! Zack has been in the hospital every month since June of last year. Let’s review. It will be fun, I promise. June 18-23 – surgery in Cincinnati, July 13-15 – testing in Cincinnati, August 19-22 – small bowel obstruction, Walter Reed, August 25-27 – intestinal prolapse gone wrong, Johns Hopkins, September 6-16 – reconnection surgery, Cincinnati, October 15-24 – figuring out Z’s pain, iron replacement, NG tube, stricture, Walter Reed, November 10-12 – stricture dilation, Cincinnati, December 1 – stricture dilation and scope, Cincinnati, January 27-30 – testing, Walter Reed.
See, I told you that would be fun. Zack and I have been giving one another high fives to celebrate and doing our happy dances. I would show you my happy dance, but it would blind you. Instead, I’ll treat you to this little gem. Zack doing a happy dance in the basement to one of his favorite songs, “Cray Button”. He likes it because it was his big brother’s favorite song at one point and let’s face it, big brothers are cool.
The good news does not stop there. Tomorrow marks two weeks since Z began taking steroids. At first I was worried nothing was happening. However, slowly but surely we are starting to see some changes. Zack’s pain level has significantly decreased. Since starting the steroids, Zack has only woken twice from pain. That means he has been sleeping through the night like a real boy! It amazes me how much sleep he requires, but he is making up for a LOT of lost sleep. He still asks for Tylenol every day, but he is down to asking only once a day instead of multiple times and he is no longer having pain after eating. His stomach is still bloated after eating, but that is better than being distended all the time. In between meals, his stomach size will sometimes even decrease. Our goal is for it to be “flat as a pancake”. While we are not there yet, it is improving.
We are also starting to see signs of one of our favorite side effects of prednisone…our boy is HUNGRY! What? Zack is actually asking to eat meals and between meals he is asking how much longer until the next meal. Today I looked at his face and had to do a double take. He looks so different to me already. His little arms and legs are starting to look as if they have some meat on them rather than being all bone. We are all anxious to lose the NG tube and hope that will happen real soon. I am concerned about what will happen once Z is off the steroids and his appetite goes back to normal, but that is something we can address later. Check him out!
We are still having some issues that concern us. Zack was unable to stool on his own for over five days. He asked to be irrigated each of those days because things were “stuck”. He had a lot of pain leading up to each of the irrigations and we did not care for that. In addition, Z has had several days of bleeding and that is always freaky. Z’s doctor reminded me that just a little bit of blood can look like a lot, so I try to remember that when bleeding occurs. We are a bit worried because his body should be able to get things out on his own and yet he is still unable to accomplish this. Zack was able to get things out for two days, but it was straight water with no substance and that is not normal either. We are now back to not stooling without irrigation. Something is not right about this and we are concerned that surgery to correct that obstruction is looking more likely. Have I mentioned that we dislike surgery?
One of the theories Z’s doctor has put forth is that perhaps there is more than one issue going on in that little body. Perhaps the obstruction is one issue that might need to be fixed surgically and the motility and colonic distention might be another. That is one of the reasons we are changing just one thing at a time, so that we can keep track of exactly what happens with each drug or each treatment. It takes a bit longer to do things this way and we have already established that I am not a patient person. However, watching how Zack responds to these things has led us to believe that the more than one theory is most likely true.
I believe that we will continue with the steroids for the next week or two and then see how Zack’s body is responding. I find myself analyzing every little symptom and sign and willing them to be good things. I have a personal idea of what I think will happen and Jim and I have discussed different scenarios and outcomes. The reality is that we just have to wait and see what happens next. Darn it. You would think I would have learned patience by now for goodness sake.
So, welcome March! May you be as good to Zack as February. Come on steroids, do your thing. Good luck Dr. O and Dr. D. We are counting on you to do great things for our guy. No pressure.