So, we are at day 6 post transplant. At the risk of sounding like I am looking for sympathy, I will tell you a little about what it's like for us at this point. Imagine:
Your baby has a temp. hovering a little over 101 that subsides with tylenol, only to bounce back up for over 2 days.
She has diarrhea over and over again, multiple times a day and through the night.
She hasn't eaten any solid food, only sips of drinks here and there, since Monday. She is being fed intravenously.
She complains of her tummy hurting and wants you to rub it--pretty much all day long.
She doesn't want to play and doesn't smile for most of the day.
She wakes up from her nap feeling nauseous and spitting out saliva and mucus because she sometimes doesn't want to swallow.
Your two hospital stay tag team-mates cannot come and be with your baby at the hospital anymore because they have colds, or what might be colds, so you stay there for days without leaving.
You are pretty much unable to nap here at the hospital.
Your baby's white blood cell count jumped up from 80 to 290....back down to 80 again. : (
And that was my day!
I promise I didn't tell you all that to make you feel sorry for us. It is true that today was the worst day over all. A combination of things caused it, the biggest culprit being that annoying temperature she has that won't go down (that they say is very common post transplant), and getting her pain medication situation figured out. Hopefully by tomorrow we will be able to have it controlled better.
Honestly, we are okay. First of all, Sarah, as most children are, is very resilient. She can be moaning with pain one second, and then the next when the medication is working, she will be totally fine and playing, like she forgot all about it. That first bad day that almost did me in, she was vomiting so pitifully. I thought I would never survive this ordeal. As soon as she was done, I asked her how her tummy was feeling, and she paused a second, and said with a cute little hand gesture, Feeling fine. : ) And was soon playing as if she forgot all about it. Tonight after a day of feeling lousy, the meds kicked in, and she was singing and doing the motions with Barney, reading books happily with Mommy, and playing with her new doctor set, as if everything was normal. As hard as it is to watch her suffering, I know she is really coming through this okay. And, as bad as it is, everyone assures me that still she is doing so much better than most! She is still talking, playing a little, and taking her medicine fine. Things unheard of in almost all transplant kids. Also, still no sores in her mouth, although we do think they have crept up to her throat, and so she is not swallowing as much anymore.
And I am okay too. I have learned a few things. First, God gives mothers the patience and strength to handle things like this. It is truly not too hard. It is tiring, but it feels natural. It's simply what moms do. I love being here with Sarah, hugging her, cuddling her, rocking her when she needs me. I am sooooo happy to be her mom, and to be able to help lift some of this burden from her.
And I've learned that it truly truly is in these times, that God gives you His most intimate, loving presence as a gift to show you that He truly is sufficient. If you just allow Him, He really will surround you with His peace. It is so easy to draw close to Him. It feels like He is just sitting on the hospital room couch, waiting for me to have a free minute to come and spend time with Him, and as soon as I do, He is right there, filling my soul. How I treasure these quiet times with Him, away from the sometimes chaotic life that I normally live, away from television, telephones, responsibilities and the stuff of the world. Just focused on Him, thanking Him for all He is and all He gives, and praying for my girl, knowing that He has her in His hands.
And that is why we are okay. Because even though sometimes things are not good, it does not mean that God is not good. We can make it through anything because He is with us, loving us through. He can do the same for you. I hope you will trust Him today.
Thank you for praying for us! I am praying for a better day tomorrow, and it won't be long until this will all be a memory and we will be on our way home again!