When we checked into Walter Reed last Wednesday, Zack could not walk from the parking garage into the building. He was so weak that he rode in a wheelchair to see his doctor and then to be admitted onto the ward. He was so pale that his feet were a freaky version of white and his tummy hurt all of the time. I am happy to report that after his “tune-up” our boy has regained some of his spunk. I like spunk.
Zack’s iron levels are improving. There are several different markers for how your body uses iron. I do not know what they all mean, but I do know that the number that shows how hard his body is working on making new red blood cells is up. That is good. He has pink lips again, his ears almost have some color again and his feet are less freaky looking. All good things. Even better, his energy level is returning. When we left the hospital yesterday, Zack walked on his own all the way to the car. That makes me pretty happy and Zack noticed it as well. In fact, Zack commented that his doctors must be crying happy tears because he feels so much better. Amen.
One of the issues Zack has struggled with his entire life is eating well. Through the years, we have done a pretty good job of getting enough calories into our guy. For a few years he even tracked along the 50% curve on the growth chart. Sadly, for the past few years he has been dropping on the chart and is currently below the 5th%. Since surgery, Zack has had a lot of pain with eating as well and this has led to long periods of Z not eating. The decision to give Zack and NG tube was bit hard emotionally for me and for Jim. How will Zack feel about having a tube in his nose? Is there anything else that might happen that we do not know about? If there is something else, do we really want to know? We are getting a little tired here…But then we regrouped. Just needed a moment to process.
Obviously, we wanted to do what was best for Zack. His doctor explained that his poor nutrition could be contributing to his belly pain. Poor nutrition hinders healing, energy levels and a host of other things. Zack was just not getting better, so we knew we needed to have the NG tube placed. Surprisingly, after the initial yuck of placing the tube, Zack has done really well with it. His belly pain has dropped significantly as well. He is currently receiving all of his calories through the pump, but is allowed a few bites of graham crackers and jello and to drink his precious G2 (lower sugar Gatorade). Beginning next week, we will introduce full liquids as well. I am unclear about how long Zack will be on his feeding tube, but I am thrilled he is doing well with it.
As Zack and I drove home, Jim was home getting Zack’s new Kangaroo Joey feeding pump set up. Sadly, the guy who dropped it off did not know how it worked, so we spent a bit of time figuring it out. That was a bit frustrating as he was supposed to be able to explain it all to us. Happily, it is much like the one we used in the hospital. It took a little doing, but after calling and talking to our nurses, talking to customer service and searching Google, we were up and running. Zack loves that he has the option of wearing his pump in a backpack so that he can do all the fun things he likes to do and not be tied to an IV pole. It is actually pretty handy.
Z getting ready to check out the neighborhood for the first time in 10 days.
Wearing his snazzy backpack.
So now what? Well, Zack seems to be having an issue getting stool out. Over the past two weeks it has become evident that he is going several days without any output and then has a day where he becomes very uncomfortable and distended and then it all bursts forth. Real life people, real life…When this happens he is in considerable pain, vomits and bleeds from his bottom. We know that this is most likely from his stricture at the anastomosis (reattachment) site between his rectum and descending colon and that the stricture needs to be fixed.
Obviously, we would like to have this problem addressed as soon as possible. After much discussion between our doctors here and Z’s surgeon in Cincinnati, we have decided to head back to Ohio in the near future. To fix the stricture, Zack will go to the OR where he will be scoped before the procedure to see how the anastomosis (reattachment) looks. His surgeon will then dilate the stricture with some sort of balloon. Once that is done, she will scope him again to make sure that there are no complications and that is it. It is not surgery, but it is performed in the OR. Usually, this procedure is a same day procedure, but because Zack’s body has been difficult lately, his surgeon wants to admit him overnight just for observation.
Zack’s surgeon will be out-of-town next week. Jim has a business trip the following week, so we are trying to decide if he will cancel his trip or if we can wait a few days longer to travel to Cincinnati. We should have it all planned out by the beginning of the week and look forward to solving yet another issue for our guy.
One lingering concern is whether or not Zack is having motility issues as well. When we went to Cincinnati for motility testing, all the tests came back normal. That was before he was reattached. Now that his intestinal tract is put back together, there is some question as to whether or not his motility is actually normal. It does not feel as though it is…but that is a problem for another day.
Today we are happy because Zack is home to help celebrate his big brother’s birthday. He was most upset yesterday when his tummy was not feeling well. He was crying because he needed to get home to his big brother for his birthday. He told everyone he was feeling awesome, even though he clearly was not, because he did NOT want to stay another moment in the hospital. He got his wish and is so excited to be home to celebrate Jake’s birthday. I think he is most looking forward to giving birthday spankings and presents. He’s all about the presents.
Thank you to everyone who helped us over the last week and a half. We appreciate all of your visits, meals and calls. Thank you to everyone who helped shuttle Jake to and fro and to our awesome friends who put together a birthday surprise for Jake at his Youth Group overnighter. My heart was happy to know that Jake’s birthday was extra special. You guys make me smile.
Um. Yum! Chocolate cake!
My 17-year-old. Wow.
When we get more information about our trip to Cincinnati, we will update our blog. Until then, I am hoping for a few uneventful days. It is about time.
Hug your babies!