Chandra's Journal
June 6, 2006
It’s a good day – the boys are taking a nap after our little excursion to the mall for summer T-shirts and Chik-Fil-A, the house is clean, Creed’s new pictures will be ready to pick up today, and I still have a little bit of a People magazine left to flip through. (I couldn’t believe Drew had no idea Angelina Jolie was ever pregnant!)
I would venture to say that we have earned a few days like this after the last two weeks. Two weeks ago exactly was a normal day except that when Drew picked Canon up from Rhonda’s house (he was going to meet me at my haircut appointment so we could get the boys’ hair cut as well), we found out that he had the diaper explosion of the decade - I’ll spare the details. He acted fine, and messy diapers are not totally out of the ordinary, so we didn’t think much about it, except to apologize profusely to Rhonda for all the cleaning up she did. Well the next morning he woke up in a similar situation requiring me to take him straight to the bathtub. While the water was running and he was sitting on my lap, he began vomiting. It was obvious that something was wrong, so I brought him in immediately to see Dr. Young. He said that he’d seen a lot of this kind of virus going around and sent us to the hospital to test his stool for multiple causes. For the rest of the day, Canon was unable to eat or drink anything, so I was giving him 10-20 ccs of Pedialyte by syringe every ten minutes to prevent dehydration. He tolerated that well, even through his naps. That afternoon he began to run fever, spiking at 104. The whole team knew about what was going on and Jaymee had already told us that morning that if he needs to be admitted for treatment, that we would need to go to Lubbock so that Dr. Higgins could admit him to Covenant Hospital and take over from there. So Drew and I were just sitting on “go” all day, ready to go if any of the symptoms began to worsen. But thank God, he began to improve overnight and the next morning. He wanted to eat some crackers and juice and started to walk around the house in short spurts again. He also had developed the tell-tale rash that we have been told shows up at the end of a viral process.
So my dilemma that night was that I had been planning for a long time to leave town then to get to Bradley and Danley’s graduation in Austin. For hours that afternoon I struggled with the decision to stay or go. My family had already accepted that we weren’t going to make it. But I was hanging on to the possibility that the virus was gone and Canon would just continue to improve. After watching him for a few hours, at about 7:00 that night, Drew said he thought he would be fine to go. He knew how much I wanted to be down there, but I had told him that I was worried and that I wouldn’t go without a push. So by 8:30 I had the car packed and the boys and I were headed to Abilene for the night.
We made it to Austin the next day, the afternoon of graduation. After we were just there for a couple of hours, Drew called from home and said that Canon’s lab results from the day before came back weird. In a few minutes, Jaymee called from Houston and explained that his Prograf level was high and we needed to get labs the next morning to be sure what was happening. So after a lot of research, I found the one lab in Austin that can run a Prograf trough test, called Dr. Higgins to fax the order, and made arrangements to be there Saturday morning first thing. I was so glad to be down there celebrating my brothers with the rest of my family, but truth be told, something about the way Canon was acting was eating away at me. He had no obvious medical symptoms of anything being wrong – I was sure that the virus he had had was gone. But something about his eyes and countenance was off, he talked sparingly and frequently just wanted to sit in my lap and be still. Little things that barely even registered on a conscious level (probably because I was just so glad that he was not still running fever or vomiting), but enough that I knew he was not himself and therefore felt like I was not myself either.
Graduation was a tremendous success for Bradley and Danley and I am so thankful that I was there. I was so proud of them both and felt like everyone in the auditorium wished that they were Brad and Dan’s sister. They have made such a positive name for themselves already and it’s only the beginning of what God has planned for them.
The next morning Daddy and I took Canon to the lab for the repeat Prograf level. He did great and they assured me at the lab that they would have results in 3 or 4 hours. So we went about our day just enjoying the fact that we were all together (minus Drew, who flew in to Austin at 4:30 on Saturday). When I picked Drew up at the airport, we just barely stopped at the house before we all loaded up again for a big graduation party at one of the boys’ friend’s houses. I remember catching Drew up on the last couple of days on the way to the party. I told him that I wasn’t sure why Canon was still not wanting to eat hardly anything. For the past 3 days he had wanted nothing but an occasional cracker, and only a few sips throughout the day. I had also mentioned that he had had a few tantrums that were very out of character – screaming at the top of his lungs. We decided to mention these things to the TCH on-call GI doctor who we expected to hear from with the new Prograf level results. After about 30 minutes at the party, Dr. Abrams (aka Dr. Steph) called to let us know that the test done that morning came back so high that she and Dr. O’Mahony thought it must be a lab error. They had never seen a number that high before. I asked what the side effects would be of elevated Prograf and she said that at a level this high, they would expect that he would be having seizures and that he would be difficult to wake up, neither of which were an issue. But… I mentioned that he wouldn’t eat or drink and his abnormal behavior. She asked if he was having wet diapers and I thought back on the day and realized that I had not changed a wet diaper all day. My mom said she changed one that was barely wet, but that was all for the day. Dr. Steph became more and more concerned as we discussed these things. She even told me that if he had been totally dry all day, she would have sent us straight to the ER. After learning that the lab in Austin would be closed Sunday and Monday for Memorial Day, the decision was unanimous – bring him to Houston right away. After some convincing on Drew’s part, we agreed that Drew would drive Canon to Houston and I would stay in Austin with Creed. Just in case it was a lab error and they were able to come back right after another test was done. So we left the party and Drew and Canon headed to TCH.
That night was very weird, as well the next day. It just felt like I was in the wrong place. Don’t get me wrong, I loved the company of my family and getting to catch up with all of them, but knowing Drew and Canon were in Houston felt very unnatural. Saturday night I was able to talk on the phone with Debbie Webb, a long-time friend of our family whose son Chad has been through two kidney transplants (the second one she donated herself). Having been through all of the transplant issues and being an RN, she was able to teach me so much about what we were dealing with through what Chad has been through with Prograf. Basically Prograf Toxicity means two things – neurotoxicity and nephrotoxicity. The first being brain damage essentially, the latter being kidney damage. When Canon’s Prograf level finally came back, we discovered that it was indeed way too high, but not as high as the Austin lab reported (ideal is around 10, Austin reported 85, TCH reported 30). They admitted Canon with Prograf Toxicity and stopped his Prograf immediately. The issue that plagued Canon at the time was nephrotoxicity. His kidneys went into a “mini-shutdown” which caused him to retain fluid and not adequately clean out his blood supply of toxins.
That day I bought a one-way ticket to Houston and left Creed Monday morning with Mom and Dad. The feeling you get when one of your children is far away is one that I just can’t describe. And away from two babies?? At the airport I was talking to my friend Jennifer on the phone and we agreed that this kind of “torn” feeling just doesn’t happen to you until you have two kids. But obviously Canon needed me more and I just prayed that Creed would take a bottle for Mom and sleep well.
By the time I got to the hospital Canon was already doing much better. He was having some wet diapers and his Prograf level had gone down to 11 already. They took him off IV fluid and wanted to see how he did through one more night. After being a trooper all day Sunday in an ER room and sleeping on the hospital couch-bed Sunday night on the transplant unit, I sent Drew back to the hotel room to sleep on a real bed Monday night. That night Canon and I were both asleep by 9:30. On Tuesday the Prograf level was at 10.2 and after laying eyes on him himself, Dr. Karpen released him. We left at about 2:30 to take Drew to the airport to catch a flight back to Amarillo (he still has to work – I’m officially in summertime) and drove from there all the way back to Austin. Canon slept from as soon as we left the hospital garage until we hit the Austin city limits.
After a week of daily fluctuating scenery and emotions, we were happy to be back home on Friday – all together, all healthy, and a new contract on our house! Praise God!
I’m veering from Canon’s medical updates to just talk about them for a minute. There are so many things I don’t want to forget… little things that I see every day now, but that I’m sure will fade as they grow. Like the fact that Creed loves Ranch Style Beans, a lesser known genetic trait inherited from me and my mom. Or the fact that if the moon is anywhere to be seen, Canon will spot it within seconds of going outside, even in broad daylight. I’m not sure how much longer he will say hello to animals and inanimate objects, but it will be a sad day when we don’t hear “Hi Moon!” and “Hi Squirrel!” anymore. I don’t want to forget what an interesting game Creed and I wind up playing whenever I want to sweep or vacuum. He wants to be wherever the broom is, so as long as I can sweep faster than he can crawl I might get something clean, but that’s not as easy as it might sound - he’s fast! The boys have just begun to play their own cat and mouse games around the house. Usually it’s a squealing, laughing Creed chasing a squealing, laughing brother until he finally gets Canon backed in a corner or Canon decides to give up and they form a heaping pile of giggles. The sound of them laughing with each other is the most therapeutic sound I could ever imagine. Meal times have been especially interesting as of late. Thank you God for the special skill that you have given mothers to feed three people at once (and if I cook, I’m counting Drew as four; isn’t that fair?). Canon is sometimes more interested in saying a prayer than eating anything. Sometimes we’ll finish a prayer, I’ll take a bite and give Creed a bite, then Canon’s reaching out his hand and asking, “Say a prayer?” I can’t deny this request of course, so we say another prayer and hopefully get another bite in before he taps my arm again, “Say a prayer?” Creed is drinking pretty well from a cup at mealtimes. I wouldn’t say he’s mastered the skill, but if he’s thirsty at the table, he works with the cup until he remembers exactly how to do it. We’re also practicing saying, “Uh-oh.” Canon has been lots of help. When he notices that Creed has dropped his cup or a Cheerio he coaches, “Creed, say uh-oh.” The last couple of days I have noticed that Creed is trying really hard; he’ll drop something and look down and then look at me or Canon and say “Uh-…” like he knows there’s another sound there, but he just can’t get his lips to move fast enough.
I’m so blessed. I try not to take a single minute for granted.
Chandra
