Sleepover

Will and I are spending the night in the penthouse… at least that’s what they call the room at the end of the hall at Children’s Hospital. He was admitted today as a precaution since he was running a fever while on a strong antibiotic. We’ll be here overnight but hope to go home in the morning following a few rounds of IV antibiotics. Most likely, he has UTI because of the stent put in place during the surgery. A kidney stone also has many bacteria that are released when the stone breaks up after surgery. With all of those foreign objects in his body, it’s reasonable to assume he’d have some trouble.

He is much happier now. It’s really painful for him to urinate but they have given him a large dose of Tylenol with codeine and it’s taking the edge off. I know many parents have had to watch their children in pain constantly, but in the last two weeks, I have seen enough to know I never want to see it again. It is hard to watch my baby hurting when I really cannot help. Nanny has been an amazing help to both of us today: taxi, extra arms, calming words, entertainment. Papa and Papa Jim brought me dinner (which was also breakfast and lunch) and are amusing Will with the Nascar race and giving me time to write this. My little boy is a mama’s boy only when he doesn’t feel good so I’m glad to have the help.

I am sad to miss the fun night we had planned to celebrate Grammy Chris’s birthday who is visiting from Alabama but we are thankful that we’re going to find out what’s causing his fever and be able to put him on the right antibiotics while his stent is in place.

Libby and Andrew were able to spend the day with Grammy and then at Aunt Sara’s. Libs has been looking forward to a tea party with Grammy using the special cups and I think they even went grocery shopping together. They’re planning a visit tonight and we’ll be so happy to see them!

Thanks for your prayers tonight. We were in the ER long enough today to count our blessings because we were one of the few non-trauma cases. We cried for the mommies who came in with their babies on stretchers. After sitting in that microcosm of sadness, I am reminded of a verse I read this week and am comforted that He knows where I am. Psalm 24:1-2 says, “The earth is the Lord’s, and everything in it, the world, and all who live in it, for he founded it on the seas and established it on the waters.” Once again, I am entrusting this little boy to hands much bigger than mine.

A Good Beginning

Will and I were sitting in his hospital room while he recouperated from his adventure in the OR. He happily played with the container that my chicken salad sandwich came in and fussed at me when I forgot to give him a bite of the sandwich. He flirted with his nurse. He enjoyed some chocolate pudding. I'd say he's on the mend! (He especially hammed it up for Nanny.)

The surgery went well. We'll wait a month and go back to the doctor for an x-ray to see if the stone is gone. He'll have a stent in for six weeks and will be on antibiotics during that time. The bonus of that situation is that we may not have any ear infections for six weeks! After the six weeks, he'll have another surgery to remove the stent (barring any problems during that time).

After surgery, Will did okay. His pnuemonia stirred up a little problem but he's fine. He was in more pain than I realized he would be and broke out in a stress rash while he was still in recovery which was unusual. He seems to be comfortable now but he's been pretty miserable off and on. He perked up for his visitors: Papa, Daddy, Libby, Papa Jim and Nanny. He really loved seeing his sister and she said (as she kissed and then patted his head), "I'm so sorry you had surgery, Will-Will." And then she looked at me with a very sincere expression and said, "I wish I was a doctor so I could help Will." Such a sweetheart! I told her she could be a urologist when she grew up if she wanted to but she thought the name was too funny and didn't think it was a good idea anymore.

We had a glimmer of hope that we'd go home tonight but since he's had a rocky start with recovery, we're spending the night. It's a good thing we did because while his nurse was changing his diaper, she found he's already started passing pieces. TMI, you say? Not at all! This means the surgery was probably a success... but we still have to wait.

While we were waiting for surgery, I caught up on an aquantance's blog and I felt renewed after 5 minutes of reading about her circumstances because of her solid faith in Jesus. Her son is also at Children's and they've been here for three or four weeks. They are traveling down an unexpected path with their little boy and yet her blog entry from this morning was an encouragement to those who might be doubting God's hand in this little boy's life. She said, "I wanted to write to any of you who may be questioning or possibly doubting in God. So many people are praying for complete healing and yet we continue to wait. God could have healed him completely three weeks ago. I'm his mom, watching him struggle through this, but I know, without a doubt, that his Heavenly Father watches him even more. The God who created us knows far more than we ever could. His thoughts are higher than ours. He has a reason for this, and whether or not we will ever understand it, we trust it is best. I've already heard so much has been happening as people are praying for him. Some of you are growing closer to Him. Perhaps you are the reason we wait, He wants your heart completely. He loves each one of us too much to let us live without Him."

And so we wait, too.

Gotta Start Somewhere

Although I have at least five unpublished blogs updating my blog friends on our life, I’m skipping ahead to our life at the moment.

But first, Andrew and I love being the parents of two amazing kids. Libby adores preschool and wanted to invite her teacher to her third birthday party. She has a fabulous sense of humor and she would have a play date every day if she could. Her favorite thing to say when we get in the car is, “Where are we going next?” She is a blast and her brother agrees wholeheartedly. Will is a huge fan of finger painting, bath time, swimming lessons, drinking out of a cup and attempting to feed himself. He would also love to have daily play dates especially if another boy will be there. The child is surrounded by women most of the time because of his therapists, nursery workers and gym ladies so he’s thrilled when another male is around. They keep us busy and we’re so thankful for their smiles and laughter. Although we love our kids and since he is in a wedding in Jamaica, Andrew and I are taking a much-needed vacation sans children. It should be a wonderful time together and when we return we’re hoping spring will have sprung!
After enjoying relatively good health over the last 8 months, we hit the end of January and started visiting the doctor about once a week. The kids both had sinus infections and were put on antibiotics. I came down with influenza. Libby caught something from me and wrestled with fevers off and on for over a week. And Andrew joined in the fun with some upper respiratory stuff. Both kids maintained nasty coughs but there isn’t much one can do about that.
At the end of February, when I thought my sleepless nights were coming to a close, Will woke up around 11 pm and was throwing up. It wasn’t that unusual since we’d all been sick and he’d thrown up here and there because of all the mucus draining into his belly. We cleaned him up, gave him a bath, and put him back to bed. Around 4 am, he woke up crying. I went in to get him and he was burning up. I took his temp three times and they were all around 105. After giving him Tylenol, we went to the ER where they swabbed him for the flu, gave him a breathing treatment and did a chest x-ray. We went home with an inhaler, no fever, the encouragement that he’d probably have to come back and no clear diagnosis.
Four days later, his pediatrician called and asked for a follow-up x-ray to confirm pneumonia. Upon reading the x-ray, which did confirmed pneumonia, his pediatrician told us that there was a foreign object in his abdomen which he attributed to him swallowing (or Libby giving him) a small toy. He wanted to have another x-ray in a week to make sure it had passed through the intestines. Of course, I had the exciting job of “watching” for it. While waiting for the third x-ray, Will was on another round of antibiotics to treat the pneumonia. He finished those antibiotics on a Saturday and that Sunday his fever came back at 101.5 and lasted for two or three days. I called the doctor to ask about this but they felt like he’d been on two rounds of antibiotics so this fever was probably viral.
That Thursday, we went to have his third x-ray. (At this point, I was on a first-name basis with the technician. I had also taken Libby to get an x-ray after Will was diagnosed with pneumonia to make sure she didn’t have it.) That x-ray showed that the foreign object was still showing up on the x-ray and that it was probably in his kidney. Of course, the foreign object then became a “mass” which is a much scarier word to me.

We went for an ultrasound of his kidney on Monday of this week. The technician who preformed the ultrasound was very sweet, but as soon as we entered the room with her, I realized she was the same technician who had preformed the ultrasounds in the NICU when we found out Will had PVL (the precursor to CP). Even though I’ve had so much practice controlling anxiety and fear over the last 22 months, I was still overcome with both of those emotions. And, just like with his head ultrasound, when I looked at the screen I could see white stuff in his kidney that shouldn’t be there (I’m considering a career as an ultrasonographer). We were prepared for a kidney stone and when I talked to the doctor in the next couple of days, he agreed. We saw an urologist yesterday (Wednesday) and he immediately suggested surgery but very non-invasive surgery. They will use ultrasonic waves to break up the 1 cm stone and ideally it will become powder and pass easily. We’ll have to wait a month to know whether or not it worked. Unfortunately, the likelihood of another kidney stone is 100%.

Will is going to have surgery on Monday. After being cleared by his cardiologist (he had a benign heart murmur) and his pediatrician (because of having pneumonia so recently), we’re scheduled for 8:45 am and it will be an hour-long process. He’ll be in recovery for an hour and then will stay overnight to monitor his breathing and peeing. Libby will be in the good hands of family (and her preschool teacher) and our friends have offered to help with meals and any other details.

So, although we are so thankful for the chain of events that lead to discovering this stone, we’ve just begun this episode into the wonderful world of kidney stones and although we’ve gotta start somewhere, I didn’t really want to start at all.

If you want to join us, we’re praying for the ultrasonic waves to powderize (sp?) the stone and for the powder and pieces to pass painlessly. We’re praying for the surgeon and nurses to sleep well and to be focused, for the anesthesiologist to have wisdom when administering the anesthesia, for Will to respond well to the anesthesia. We’ll keep praying that there won’t be anymore stones after this. Wouldn’t that be great? And, while being checked out by the pediatrician, we discovered Will has an ear infection. He’s on his third antibiotic in six weeks but I can’t say I am too upset about the extra protection while he’s in the hospital. But I’m still praying for a clean bill of health after this infection is gone.
It is not lost on me that in my Bible study last week I read about the Israelites sitting on a wall listening while doubts were hurled at them about God’s protection and provision from an enemy army. The challenge to the Israelites then and to believers now is to choose faith in the Lord instead of giving into the doubts that inevitably surface when life is harder than expected or situations arise that seem unbelievable. I can’t say I haven’t thought, “Really? One more thing?” but I’ve learned that trusting His plan when I can’t understand His method is a big part of this journey. The verse I chose to memorize last week before all of the surgery drama surfaced has been a comfort to me while driving from doctor to doctor and while finding little shelters for Libby during all of this. The Message translation of Isaiah 43:2-3 says, “When you're in over your head, I'll be there with you. When you're in rough waters, you will not go down. When you're between a rock and a hard place, it won't be a dead end— because I am God, your personal God, The Holy of Israel, your Savior. I paid a huge price for you: all of Egypt, with rich Cush and Seba thrown in! That's how much you mean to me! That's how much I love you! I'd sell off the whole world to get you back, trade the creation just for you.” And He means that for Will, not just for me. If He loves Will that much, how can I doubt His care for him? I can’t. He is lavishing His love on us. (Thanks, Dad)
And so on those mornings when I think I cannot put one foot in front of the other, when I want to drown in the thoughts of “are you kidding me?” and when I’ve had it with all of the running around, I try to remember the truth of that verse. I mean, I have to start somewhere and that’s a pretty safe place to start.