Bump in the Road

Waking up after surgery last night.

If we've learned anything in this journey, it's been to expect the unexpected. Sometimes the unexpected is great; like getting to recover in the comfort of our room at the Ronald McDonald House (RMH) last night after surgery (rather than the hospital). Sometimes its just a change of plans; like changing the procedure they'll do next. Sometimes it's something that's just plain hard to accept; like the day we've had today. Most of the time its a mix; but, even after the hardest of days, the one constant we can count on is that it's all for the best interest of Josie.

Surgery...

First and foremost, yesterday's surgery was a success (our ultimate goal). Josie was very anxious going into this surgery, much more this time around (she's getting older and her last surgery is still so fresh in her mind). But, God answered some prayers and we landed an exceptional anesthesiologist who helped to turn a big scary surgery into a more tolerable one. When Josie woke up from this surgery she was calm and very relieved, in fact the first words out of her mouth were "I'm so glad its over" and "I like the way that Dr. did the mask". Home run! Her doctors reported that they removed all of the tumor on her forehead and discovered that there was an overgrowth of bone next to the tumor about the size of a quarter, which they shaved down. They also added that Josie would have a compression wrap on her head for 24 hrs rather than a drain (typically this incision doesn't require one). This tumor, as we have been learning, effects all of the tissue around it. We are also learning the way it reacts after being removed, but we will discuss that in a little bit. 

Bump in the road...

We came back to the RMH last night and got to rest in the comfort of our room. Josie had been complaining of her eyes burning and I had noticed that her forehead was starting to swell (which I wasn't worried by). Both of us were completely exhausted and sound asleep before 8 o'clock and other than getting up to give pain medicine once, we slept a solid night's sleep. We woke up early this morning with no burning eyes, head swollen a little more (still wasn't worried), and spirits completely refreshed. We were expecting an easy day of going to the clinic for a quick check-up at 9 followed by a day of lazy recouping. However; after just a few minutes with Dr. Waner, we learned that we'd be returning to the surgery center in the afternoon to have a drain put in. He said they are learning that this type of tumor produces a lot of fluid (I can't remember the technical term for the fluid) when removed. To say our hearts sank would be putting it lightly. I wanted to bawl, but I knew I couldn't. In an attempt to keep Josie's spirits up I offered to take her anywhere she wanted for the 3 hours we had to kill. She chose FAO Swartz (the big toy store), so that's exactly what we did. But even a giant toy store can't cure all things and there were huge silent crocodile tears when we returned to hospital admitting. They lasted all the way up to pre-op and that's when we met with our anesthesiologist friend. For some reason he has this remarkable ability to calm her. He soothingly talked her through the entire process and after my brave girl drifted off in my arms for the second time in two days I went to an empty waiting room and lost it. 

Being a grown-up is hard...

It's been an incredibly long several days and I've had a lot of time to sit and think and reflect. I'm learning first hand that nothing good and wonderful comes without pain. Seeing Josie cry with anxiety and suffer with pain after each of her surgeries is absolutely unbearable. Today was no different. I struggle with staying positive after each of her surgeries, because after each one comes the discussion of what's next. The weakness in me says "she can't do this again...I can't do this again...why her?". It's dangerously easy to get frustrated and want to toss in the towel, I've had so many moments today. Luckily God has stayed with me and he whispers reason into my ears when I have none and restores my soul when I have nothing left. Today was no one's fault, its the nature of a disease that we are gradually learning more about. So tonight I stop, I take a deep breath in, and as I watch sweet Josie sleeping next to me I am choosing to celebrate all the little victories we've had and how very far she's come. The greater the battle the sweeter the victory. Hopefully tomorrow is a more predictable day.

"Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." Matthew 11:28-30.