I'm So Scratchy!!!

We've been pretty busy over the last few weeks, and thankfully, time has passed fairly quickly.  Pretty soon, I'm going to start counting down the actual days until the halo comes off.  I haven't really wanted to do that quite yet, just in case the doctor tells us that he has to wear it longer...ugh.  Over the last couple weeks, we've had a few rough nights with painful pins, and yesterday, Ian slipped in his socks and fell flat on his back, landing on the pins.  To be very honest, when those things happen, I have a love/hate relationship with the halo.  I am grateful for the protection it offers, but I hate how it hurts him and how I feel like I've been living with a pit in my stomach for months because of it.  After the fall, there were LOTS of tears, and I was trying not to freak out and cry myself.  It's times like these that I am extra grateful for my wonderful husband who brings both compassion and rationality to these situations.  He checked the halo for movement (which there was a tiny bit) and the pin sites for bleeding (which there also was), but he assured me that he was ok and reminded me that we're seeing Dr. Fedor on Monday.

Distraction often works to calm Ian, so I got him the iPad and we found a game he likes.  He was able to calm down, and I went to get ready for the day.  My mind is very busy, and I find that when I'm doing menial tasks like getting dressed, cooking dinner, laundry, etc., my mind seems to replay somewhat significant (or difficult, or regrettable) life events over and over, and often times, I don't even realize it.  As I got dressed, I was still thinking about what had just happened and how I had no control over Ian falling or the pain and fear he felt afterward.  It brought me back to one very dark night I had in the hospital with Ian.

Jason was able to stay with us in the hospital the first night after surgery, but the second night, he had to drive home since he had court (or a meeting) in the morning.  I understood and was feeling fairly confident being alone with Ian through the night.  The night after surgery, Ian slept several hours at a time, and we were still in the PICU, so there were lots of nurses around to help.  Well, I had no idea what kind of night that was going to be.  I got him pretty much settled in around 9 and he fell right to sleep, so I laid down on the little chair/bed thing they had and tried to get some rest.

Sometime around 11, he woke up, and he just started crying.  I tried to calm him, but it wasn't working.  He was only half awake, but he was becoming more and more frantic by the minute.  I called the nurse after about a half hour, and she tried to help, but there was really nothing she could do to help - and all the things they do in the PICU - like taking your blood pressure, temp, and checking the IV every 30 minutes wasn't helping!  After about 2 hours of inconsolable crying, the nurse paged the doctor on call, who came in and said really the only thing they could give him to help him calm down was possibly Benadryl.  At that point, I was willing to try anything.  He'd had Benadryl before without a problem, so they tried it.  After a few minutes, I knew something wasn't right...he had become inconsolable and was so adjitated that I hardly recognized my sweet boy.  He kept screaming, "I'm so scratchy!" over and over again.  He had literally pulled out half of his IV, he was pulling on his halo, he was going crazy trying to scratch, and it was so itchy under his vest where I couldn't reach.  I tried to call Jason over and over, but no answer!  Now, I was freaking out...trying to hold it together, but it was the middle of the night.  The nurse paged the doctor again after a couple hours (it was now about 3AM), and she said that sometimes Benadryl through and IV can cause itching.  Great.  The nurse was very sweet and helped me try to soothe him by giving him a sponge bath and applying warm lotion, but nothing helped.  The entire time, I was just pleading with God to make this stop.

Finally, when the nurse left, I found myself straddling Ian to keep him from pulling on everything (mostly the halo and the IV) and I just started praying out loud for him - and for me.  I could no longer hold back tears and so even though I didn't want him to see me crying, I couldn't help it.  I just cried out to God on Ian's behalf, and when I had no more words, I sang him songs - Trust and Obey, Tis' So Sweet to Trust in Jesus, and Holy, Holy, Holy - his favorites, which I can no longer listen to or sing without bursting into tears.  Almost immediately, and for the first time in over 4 hours, Ian was calm, his body relaxed, and he actually fell asleep.  He slept for about 30-40 minutes then woke up, and it all started again.  I prayed over him again and after a few minutes, he fell asleep.  This repeated several times through the night until about 6:30AM, when he fell asleep for several hours.

Wow...even though it's been months, thinking of that night brings me to absolute tears.  It seemed so strange that praying over him (literally) would bring such peace to his body and heart.  Obviously, God was at work in Ian's heart and in mine.  Looking back, I can see that although I felt completely alone, I was never alone!  What a tangible way to experience the sweet gifts of His love, His grace, and His mercy...right before my very eyes.  The Lord doesn't always work that way, but I'm so grateful for the kindness He showed us that night.  When I remember that night, I think it may have been the most difficult night I've ever experienced, and yet the Lord is using that night over and over again in my life to remind me that He is part of this whole ordeal.  He is sovereign over every single detail of my life and He can be trusted - even with my deepest fears.

I know I've shared this picture before, but it was from that night, and it is such a picture of God's faithfulness and mercy in this storm!

Sleeping With A Halo

Here's a question that people ask all the time..."How does he sleep?"  Well, that's a great question.  Let me say that he definitely doesn't get the quality or quantity of sleep that he got before the halo, but good sleep is possible.  I also had that question before we left the hospital, so I asked the neurosurgeon and the halo manufacturer representative, and both told me the same thing...he can sleep however he can get comfortable.  That meant on his back, side, or stomach!  They also told us that we could put a little pillow behind his neck because it might feel a little weird to have your head suspended while you're laying down.  We never did that (seemed like the space was a bit small for that), but I think when you're four, you kinda just go with the flow more than you would if you were older.

When we got home, I spent the first few nights sleeping on his trundle bed...terrified that he'd fall out of his bed.  Then I had a revelation (ok, so I was tired and wasn't thinking!), HE should be the one sleeping on the trundle.  That way, he was only inches from the floor!!  Since then, that's what he has done, and I don't have to worry about him falling out of bed.  He thinks it's cool that he gets to sleep on the trundle, and I can rest at night.  I also put a monitor in his room so I can hear if he needs me, since he can't come down the stairs alone (he likes to use the monitor for other things too, like serenading me and telling me that he's hungry during his nap, lol).  I asked him today what he would say to another child in a halo in regards to sleep, and he said, "Well, you can sleep on your back, or your side, or your tummy, but don't fall out of your bed."  Just for fun, I had him demonstrate how he sleeps so you can see how it looks :).

Here he is sleeping on his side...

On his tummy (this freaked me out until I realized that he can breathe because his face is elevated by the halo)...

 And my personal favorite, but the position he chooses the least, on his back...

When your head hits your pillow tonight, just be thankful that it does just that - touches your pillow!  I am so thankful that by God's grace, he does get the rest he needs!