Day 60
The background on my laptop is a picture of Catie at the Jason Taylor commercial smiling the full 1000 watt smile. As I began to type this update tonight, the picture disappeared as my email server opened and it struck me that on one hand I will never see that smile again, but on the other hand, if I am blessed to be able to join Catie in heaven, I will see it for eternity. When we last updated y’all Catie was sleeping 19 hours a day and we had to make some changes to her medications in order to accommodate the fact that she was asleep when she should have been taking her pills, capsules, and tablets. We made the decision to administer her pain medication through her central line on a pump that is about the size of a block of cheese. She started on the pump on Wednesday night and despite some start-up issues with its programming, she was out of pain and asleep by 10pm. Figuring that we would not see her until sometime in the afternoon on Thursday, we made plans to join the other kids at the 8:30am school mass. Low and behold, Catie was up by 8am and we changed the plan. By 9, she was sitting in her chair at the kitchen table eating pancakes, sausage, and waffles. By 10, she had had her fill and was taking a little nap. She woke for lunch, napped again, and then we all had dinner as a family, what a treat and a blessing, and just maybe a reversal or halt to her decline. We changed things up a bit as we prepared everyone for bed and read the most recent updates to the fab 5 so that we knew that they were up to date on Catie’s condition. They asked a few questions and went to bed peacefully. Friday morning, we did not know what to expect; sleeping Catie or hungry awake Catie. The Catie who woke this morning was in excruciating pain from a headache. She had one earlier in the night and it went away with a little ibuprofen. This one was blowing through a morphine pump. We increased the amount of medication that was being delivered and after tripling the normal hourly dose, she finally stopped crying out in pain.
She rested fitfully the remainder of the morning and ate a small bowl of cherry cheesecake, (thank you Izabela). At 3pm, I went into her room and while she was out of pain, she was completely restive. She was swiping at herself, and just completely unsettled. I called to Christine and together we called Dr. Baker at St. Jude and described what we were seeing, hoping it was a reaction to the medication. Unfortunately, what we believe we were seeing was something called terminal delirium. I protest in my own mind, “but she was doing better yesterday, she was making progress.” Dr. Baker’s voice in my ear explains that sometimes kids rally one last time. (apparently I spoke my protest out loud). At this point, Catie was awake and able to recognize and acknowledge both of us. We took her to the bathroom, prepared her hospital bed, and got her settled. We gave her some anti-anxiety medication that seems to have taken the edge off of the restlessness. It is now 10pm, and she has done little except moan and grunt every few minutes and occasionally say “ow” despite the fact that physically she is in no pain. The doctors explain that her mind, under attack from the tumor, is trying to think and function, but is having a difficult time and causing intellectual pain. We just changed her dressing and flushed her lines, (Christine did all of the work, I just held Catie’s hands which are now covered with mittens that we have taped to her wrists). She has been scratching herself and has opened up a few cuts inside her nose and the last few mornings we have gone into her room to find her pillow and face and hands covered in blood. Did you see “Million Dollar Baby”? Catie provided us with a few scary moments. The mittens protect her in her restless state. Blessedly, her agitation has mostly subsided and now that she has moved in with Christine and me, we will be a few steps away. It is beautifully reminiscent of how she spent the first few months of her life in a crib 10 feet away from us.
One of the things Hospice has told us to monitor is her breathing. Each of our kids came into this world with transient tachypnea, a temporary breathing condition in premature babies that has them breathing shallowly and rapidly and in a way, unsettled. It is how Catie breathes now at times, and at other times, her breathing is slow and deep. These changes might be a signal of her body’s shutting down process. Or not. Either at the beginning or end of life, we pray for the peace that comes when the erratic breathing comes to an end. When they were babies, it meant that they had learned how to breathe. Perhaps at the other end of the circle of life peace returns to our breathing when we no longer need the air. Again time will tell and all we can do is wait and pray.
How much time do we have with her? Nobody seems to know, or if they do, they haven’t clued me in. In this wonderfully unpredictable journey, I go to sleep each night thinking I know what tomorrow will bring, and more often than not, I am surprised that I get it wrong. I have a worse record that most meteorologists. From day to day, and even minute to minute, I try to read the signs and predict the future. I desperately want to know if I have a day, a week, or a month left with this precious angel. Today, as I write this, I would be surprised if Catie has more than a week before she takes her first breath of eternal air. Christine looks at me with an all-knowing look and says, “I have seen kids that look like Catie does now, and they have lasted in that state for months”. So what do we do? Continue to do what we have done for the last seven months, take it one day at a time. I can ask Catie the question of whether today was a good day, but tonight, she cannot answer. I lean over her and whisper again and again, “I love you Catie”, awaiting her response, “I love you daddy, and that’s never going to change”. Perhaps in answering that way for so long, she was preparing me for tonight.
The other news of the day was on the St. Jude front. The local country music station and country music stations across the country had a telethon today for St. Jude. We were asked to come on the air and share Catie’s story. I did my best to relate Catie’s experience and what we thought about St. Jude and how blessed we and many other families are that such a facility exists. We also talked on-air about Catie’s Legacy. After the interview, they played “Maybe She’s an Angel”, and Christine called me to say that she and Catie had been listening and Catie gave a fist pump when she heard the choice of song. When Holly from the radio station asked me if I thought it was worthwhile to donate to St. Jude despite the fact that Catie was not cured there, I replied that it was. At home, Catie sat bolt upright in bed and said “absolutely!”.
We have been blessed with 60 days. How many more we will have is up to God, and He has a plan that is better than any one we could concoct. Catie has had a good number of visitors in the last 24 hours, and some she was able to speak with, while others simply had the opportunity to hold her hand and speak to her. We will of course keep you posted to any changes as we continue on Catie’s journey home.
Peacefully,
Christine, Kevin, Maggie, Max, Catie, Mia, Molly, and M.E.
