by kimstin |
October 5, 2015 · 8:42 pm
It’s 5 pm. I’m making dinner. Music is playing loudly in the background and I can’t help but dance a little. I hear the girls playing upstairs, their laughter echoing through the house. As I stir our dinner, I feel a little tug on my pants. I glance down and see a perfect little face beaming up at me. Beckett scrunches his nose and smiles at me. I laugh and watch him as he crawls away to his high chair and pulls himself up. He looks back at me and smiles again. “Love you bubba.” I turn back to our dinner. And the tears start to fall.
I have moments like this almost daily now. Where the complete normalcy and beauty of the ordinary comes shining through. I love these moments. Moments that remind me just how far we’ve come and what we’ve learned. This week especially has been extremely emotional. On Thursday, it will have been exactly one year since B was diagnosed. One year. I remember so vividly the fear and worry that we were experiencing. And now our lives are so happy and joyful. A year makes such a difference.
Things at home are so perfect. Sure we have our ups and downs but overall life is just so wonderful. The changes that have occured over the past couple months are huge. His picc line was pulled out. No more lipids! We went from twice weekly blood draws to once a week. This has been great since we don’t have the picc line and have to poke Becks each week. We have been going to the doctor every 2-3 weeks instead of weekly. His belly has been staying stable and we introduced fats into his diet. He did great with that so we introduced milk. He hated it at first but once we introduced him to chocolate milk, he’s been doing just fine. We’ve gone from 15 meds down to 10 with a couple more looking like they will disappear soon. We’ve discontinued more than 5 but have added a couple in. It’s fine though because we discontinue heavy meds and add in simple ones like a multivitamin. So many people take multivitamins!!! I’m thrilled that some of his meds are simple ones. He has gone from barely drinking 1-2 ounces of water/apple juice to drinking 25 ounces, 20 of that is milk! Because of this we have cut back how much he gets through his feeding tube. He was getting 17 ounces but now only gets 5-7. We are hoping the feeding tube comes out soon. He eats 3 meals a day and has a couple snacks. He likes pretty much everything!! Just over a month ago I was feeling discouraged because he would barely put anything in his mouth. Our speech therapist was pretty stunned the last few times she came and he had made huge leaps. He went from not being able to sit, to sitting, army crawling, real crawling, pulling up to his knees and now pulls to standing. He is even letting go of the furniture with one hand and has rock solid balance. He is catching up so quickly. I am astonished.
One year ago, we were about to embark on the scariest journey I have ever been on. I kept thinking why us? Why Beckett? But now all I can think is Why NOT us? Why NOT Beckett? Look at how our lives have changed. Everyday is beautiful. Everyday I see the beauty in the ordinary that I never noticed before, at least not with any regularity. I see it in everything we do. I cry tears of joy almost daily thanking my Father in Heaven for his abundant blessings and his wisdom in teaching us a very valuable lesson. A painful one but one that changed my perspective and has made me a better person, wife, and mother.
And so I look forward to future little tugs on my pants, and my heart. Constant reminders of how blessed we are and how wonderful life can be if you’re willing to look for the little, ordinary, perfect moments.
by kimstin |
January 9, 2015 · 10:13 am
“We see no reason not to move forward and list Beckett.”
Oh the words that I’ve known were coming. It came out of the blue though. We have been in limbo for quite some time. Beckett’s liver labs and bilirubin levels keep going down and yet we’ve been in the hospital almost weekly dealing with massive amounts of belly fluid (ascites). Nothing works and yet they kept telling us that he was fine. It was so hard. How can he be fine when we are here all the time getting his belly drained? So when we found that there was a potential clot in his portal vein the doctors made the decision to move forward with listing Becks for transplant.
I saw the light. Finally. Instead of drifting around aimlessly, I finally felt like we could see the lighthouse. Our little boat had direction. We could now navigate through the big waves and stormy seas because there was the light. Even though I knew the light was still far away, I could see it! And then our week exploded.
We met with countless doctors, kidney doctors, surgeons, infectious disease doctors. Beckett had a cat scan, more ultrasounds and he had an incredible amount of blood drawn. We knew that we would still need to meet with social workers, financial aid people, and our liver team for a day of education. Holly, our liver transplant coordinator, brought by an entire binder of information for us. In the meantime, we were trying to get Beckett’s ascites under control. They drained his belly twice. They left the drain in. We tried IV diuretics. We tried multiple new diuretics. He started getting fevers. He wasn’t eating much. But as stressed as I felt, I could still see that light. He was being listed. The end was coming. Eventually.
We solved some of the problems. The drain was taken out and the fevers went away. We started TPN (total parenteral nutrition) and lipids (fats) which is a boost of nutrients, proteins etc to give him the calories and nutrition he needs so that he starts gaining good weight. We started him on a blood pressure med and several new diuretics in “industrial sized doses”. And suddenly his belly stopped growing as quickly. We were finding answers. Because of the cat scan we found that his portal vein was not clotted but instead it is incredibly narrow causing the same effect.
“Because we have things under control and his vein is not clotted, we are going to hold off with the listing.”
Just like that the light was snuffed out. We were adrift in the ocean, being tossed about, lost. No direction. This has happened before. We find a solution. It works for a couple days and then we are right back in the hospital. I don’t think I can do this. There is no ending. Will we spend days in the hospital? Months? Years? How do I raise my children when we have no security? When our lives are constantly tossed to and fro?
I was devastated. Don’t get me wrong. I was thrilled that he was doing well. But I have a hard time trusting that these solutions will work when they never have previously. It’s not that I want him to have a transplant at 6 months. I would love for him to be big and strong before he needs it. But I don’t know how to survive for a long time when we spend so much time in the hospital trying to get him to be ok and he’s not even listed. Mentally those hospital stays are easier when I know that transplant is coming. Now I just feel plunged into the darkness and the despair.
Then my baby boy laughed for the first time and a light appeared. He rolled over for the first time. Another light. His belly stayed small for 4 consecutive days. It did not slowly grow bigger, but it stayed small and soft. Light. We had friends and family reach out and bless our family. More lights. We came home and I watched my children together. Saying sweet things. Watched as Beckett couldn’t stop staring and touching Addie. Watched his smile. More lights appeared. In my mind I looked around and realized that I am in a dark field looking to the sky. And it is full of stars. As my world gets darker and scarier, more lights appear in my sky. Some are little, others are large. But they are my hope. That this will end. That things will get better and brighter.
I wake up. I hear Beckett stirring next to me and pray for five more minutes of sleep. I realize that’s not going to happen so I climb out of bed and use the bathroom. I hear him start to fuss. “Hurry up, Kim” I say to myself. I grab a syringe and quietly head downstairs to the fridge trying not to disturb the girls. Opening the fridge, I pull out the medicine bottle, double check the directions and fill up the syringe. 1.25 mL.
Carrying the medicine, I head back upstairs. I pull a baby wipe out from its container and split it in half. I put the syringe on half of the wipe on our bed.”Morning bubba!” I then pull a smiling Beckett out of his bed and change his diaper, carefully inspecting the color of his poop. Phew. It’s a dark enough color. I put the new diaper on. Time to measure his belly. I grab the measuring tape and put it under his back. “Please, please let it be the same.” I wrap it around his belly and bring it together right by his belly button. 42 cm. Perfect.
Then I move him to the middle of our bed and go into our bathroom to get the rest of his medicine. 2.5 mL of his pink antibiotic. I grab the dreaded vitamin. I open it up and immediately the smell hits me. Why? Why does it smell so bad? Scrunching my nose, I take the two medicines back into our room and lay them next to the refrigerated one.
I pull Beckett to the edge of the bed. He smiles at me blissfully unaware of what he’s about to go through. “Hey bud, you ready?” I grab the nasty orange vitamin. I pinch his cheeks and put the syringe in the pocket of his cheek. He starts to swallow and lick the syringe. I put more in his mouth pinching his cheeks so he can’t push it out with his tongue. Orange starts to drip down his cheek and I panic, grabbing the other half of the wipe before it stains his clothes or our bed. One down. Two more to go. I reach for the pink medicine. Oh how he hates the pink one. Still smiling and talking to him, I put it in his cheek. He gulps. And gasps. I hear the air bubbles go into his belly. He coughs. I sit him up and help him burp. “You ok?” He smiles. I lay him back down and we keep going. “Good job!!” We finally finish. I reach for the last medicine. He does great. I wipe his mouth and pick him up. He burps and I wipe the orangish pinkish spit from his lips. “All done Becks!” I kiss his sweet cheeks and start getting him ready for the day.
12 hours til we do it all again…..
Written by: Kimber