Since I last updated the blog, we have been admitted three times and have gone home twice. Yep, that means that we are back in Iowa City again.
We got here about 10 PM last nite after we noticed a protrusion of some kind by Blake's belly button. Worried that it might be a hernia, they asked us to come in. We thought we were going to have a CT scan done, but the fellow from transplant said he didn't think it was a hernia, but rather an infection under the skin and wouldn't be surprised if Blake's WBC was high. Guess what? It was high. And, just for fun, Blake also spiked a fever.
I know the drill. Labs, blood and urine cultures, antibiotics, Tylenol, recheck labs in the morning to check his white blood cell count. This ain't my first rodeo. This morning, Blake's WBC came down a little after one dose of two different antibiotics. His kidney numbers, for those of you wondering, have (thankfully) been rock solid. We are just waiting to see what the cultures do. Blake is also super happy and active and just wants to GO, which is also a good thing.
I had a meltdown last nite when I found out we had to come back down. I cried. I kicked my bag I take to the hospital (mature, I know), I slammed a couple doors. This SUCKS. It SUCKS really, really bad. I feel like we are in this vicious cycle of infections where he has a high WBC, is admitted, spikes a fever, gets antibiotics, goes home, repeat. When are we going to break this cycle?! Every time, EVERY TIME, my heart is full of hope that we are going to get over the hump. With every admission, I keep thinking that this is just how it's going to be.
I know that this isn't just about me. This is about Blake. This is about Aaron. And Jenna. And Brody. And Bowen. I'm a single mom with Blake in Iowa City, while Aaron is a single dad with three kids back home. I miss my hubby and kids like crazy. Anybody that knows me, knows how important family is to me. This is killing me.
When we got home last week Bowen didn't want anything to do with me. After a couple of days, we got some quality time together. I broke through the barrier. When we heard last week we had to leave again I said before I left, "Bowen, do you love me?" Do you know what he said? He said, "I love daddy first." That hurt. A lot. Like a knife straight through my heart. Yes, I know he's only two years old, but what does he know? He knows that mommy is always gone or is leaving him.
Brody wants constant attention and time with me and just him. Jenna is the same way. Who can blame them?! We've all been through the ringer the past almost-five months. That's almost half of an entire year (yes, I'm captain obvious). That's a long time.
I never thought after transplant it would be like this. I never thought it would be THIS HARD. Easy? No. Like this?! No way. I see other transplanted patients that are doing so well and I'm envious. I wouldn't wish our circumstances on anybody to be honest. I'm happy for them that they don't have to go through what Blake has.
My head and my heart are not in the best of places right now. I would never trade Blake for anything. I love that kid and he just is something else. :) However, it doesn't make all of this any easier. It's still hard. It's still trying.
If you remember I picked a word for 2014. It was embrace. Well, I'm trying. Really hard. I'm also adding a word to make it a phrase. EMBRACE THE IN-BETWEENS! In between hospital stays. In between trips to Iowa City. The good stuff. The swings. The walks. The twin conversations. The four kids playing together. The family meals. The tucking everybody in their own beds at night. That's the stuff I'm trying to really embrace.
What I know is that this is a work in progress. I am a work in progress. Every day though, I'm just trying to be a little better than I was the day before. I'm trying to learn from my mistakes. But mainly, I'm trying to give myself a break and being accepting of the fact that there will continue to be challenging days in this journey of life.
2 comments:
No!!!!! I hate this for you, and Blake. If you need some good words…google "Wait" by Russell Kelfer. It reminds me of you guys every time, as you wait for some good news and long healthy stretches. Praying for those things! Allie
Jamie, Aaron, and family, I know that it is easy for me to say and much harder to do but keep hanging in there.....you are all doing well even with the ups and downs and all of us that know your family are so proud of each and every step you have made in this process with Blake! You are in our thoughts and prayers and when things get tough always remember that God is with you through each step! Love Diane N.
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