You know you are in trouble when your sister hears from someone else what is happening with your child and reprimands you AGAIN for not updating your blog….I really think she needs to get on Facebook to hear all the most current info. Because she is extra amazing, I will indulge her request. But first…enjoy this photo of my two sisters and Zack. Carie (on the left) lives overseas and came back for a quick trip a few weeks ago. We all spent the weekend together at Becky’s house (on the right) and Zack was able to debut his new shirt. I’m sure they will both be thrilled that I posted photos of them. Sisterly love?
Enough of the family stuff. When I last posted, Zack had just returned home from his hospital stay. We had been told that his surgery site would be painful and I wrote about how it really was not painful at all. Yeah, why did I do that?
A day or two after getting home, Zack’s surgical site started looking very angry and red. Then it started weeping. Zack started having lots of pain. Soon there was pus. It was gross and evidently infected. We headed back to the surgeon and Zack was given antibiotics which we knew would help him feel better right away. Except they did not.
We could tell that the infection was looking better, but Zack was not feeling better. His g-tube just kept hurting. The pain was pretty intense and kept us from attaching him to feeds and his CeraLyte. We could tell he was losing weight and beginning to have headaches and look unwell Even worse, it kept him from sleeping. Nobody in this house does well without sleep. Nobody.
Last night was the last straw. Zack did not fall asleep until a little after 2 a.m. We disconnected his feeds, gave Motrin, rubbed his back, rubbed his belly, and prayed like crazy that he would just go.to.sleep. Today Zack was scheduled to have some benchmark testing at school, but he was exhausted and I let him sleep until he woke up. I am happy to report that I took him to school in time for the test. While he was at school, I tried to reach his surgeon and texted his GI.
Zack’s surgeon had us come in and decided that they would take out those pesky plastic bolsters that were placed for his g-tube to sit on while the incision healed. They were sutured to his skin in four places surrounding his g-tube and we were pretty sure that they were the cause of all the pain. You know, the pain the surgeon warned us about…that I said he didn’t have in my last post? Just reminding myself that I said that.
Because of Zack’s angry badger history, they had an OR scheduled for Wednesday in the event that he was unable to handle the procedure. It was only four little sutures, but things smaller than that have caused him to lose his mind before.
I am happy to report that Zack did incredibly well today. He was able to have his sutures removed with the appropriate amount of pain. Before we left, we made sure we could get Zack’s g-tube extender placed without too much pain. We were also able to see one of his Wound Ostomy Nurses who helped form a barrier between the wound and his ostomy belt so that it would not rub on the raw skin. And most importantly of all, he was cleared to participate in all of his normal activities once again.
Jim and I knew that Zack had lost weight and we were curious to see how much. As part of Zack’s vitals check he was officially weighed. Turns out he has lost between 3-4 pounds depending on which scale we use. We look forward to getting calories and sodium into him tonight. We are also hoping his appetite returns quickly. Pain and low sodium can result in decreased appetite. Over the past few days he has eaten so little it is amazing he has any energy. On Saturday his entire caloric intake consisted of half of the crust off one piece of pizza. Yesterday he had a few bites of cereal and a few bites of ramen. Tonight he actually ate two forks full of noodles and a jello cup. Baby steps.
On Friday we will see Zack’s surgeon on more time to make sure he is continuing to heal. I am sure that he will…..
I leave you tonight with a photo I just found on my phone. I love finding surprises like this, but I am not so sure if Cap loved having his picture taken! He seems to be saying, “Save me from all the love!”