Home Sweet Home

We are happy to report G is home from the hospital and normal life can resume! We were blessed to have family in town helping us manage the day to day and G loved having a little extra attention!

We were blessed with prayers from across the country and we saw God’s hand throu2016-03-22 12.36.38ghout. Firstly, the poor guy wasn’t scheduled for surgery until 1. Anyone who knows G knows he LOVES to eat, and the fact his last meal would be dinner the night before, we were preparing for a nuclear meltdown. However, G was happy as could be all day, and not eating didn’t seem to phase him. One of our dearest friends from church works at the children’s hospital, and she was with us as G got prepped, and in addition to adding her knowledge through the process, she provided a great distraction for mama’s nerves 🙂 The nurse came to take G back and he was as happy as could be and glad to go with her, another shocking occurrence!  (poor guy didn’t know what was coming!) G’s procedure entailed drilling a hole in his skull about the size of a pencil tip, inserting a wire, and securing it to his head. The wire is then connected to an Intercranial Pressure (ICP) monitor which he is hooked up to for the duration of the stay. We were told it would be a 30 minute procedure, and after 45 minutes, mama C was about to lose it. They finally called us back after an hour, at which time we spoke with the neurosurgeon and he confirmed everything went well. We then went back to see G coming out o2016-03-23 07.46.17f anesthesia. Oh boy, he was sure grumpy. Similar to last time, he had a hard time breathing and the nurse became concerned when his lips were turning blue. They hooked him up to oxygen, which he hated, but helped. We gave him two doses of morphine to calm him down so he could breathe, and that finally helped and he fell asleep and got his lungs going again. This was a huge relief to get through the anesthesia and know he was okay.

We then went up to his room and were thankful for a great view of a park and trees – it’s the small things 🙂 Knowing G must be hungry and getting the okay, we got 2016-03-22 16.03.28him through a bottle of milk, apple sauce, and some veggie sticks before it all came back up again :/ Not fun in a hospital bed! After some anti-nausea medicine the next day,  he was back at it.

Our time was spent mostly in bed hooked up to the ICP monitor, but spent a bit of time taking a walk and in the playroom. G loved roaming the playroom, where we followed him with the ICP monitor and had to record the numbers at any point it was over 25 for 5 minutes (which never happened). Most anytime I looked at it (the docs advise us not to pay attention to it other than when we are out and about!), it ranged from 1-20. G appreciated having lots of tv since we don’t watch too much at home, and his choice of iPad games without competition from Sister C!  We learned it is darn near impossible to sleep in that place! Someone was coming in pretty much every hour, and prodding him every 2.  I don’t know how sick kids can ever get well with no sleep!  Daddy P and I took turns sleeping at home so we could feel like real people at least for a day 🙂2016-03-22 19.19.19

This morning the monitor stopped working all of a sudden! I honestly thing G dislodged it in his brain due to all his tossing and turning, as they couldn’t find anything wrong with the machine. G was pretty sick of being there (especially in that bed), and kept signing and saying “all done, all done”. I am fairly certain he took matters into his own hands to get out of there! It was pretty hilarious. They were planning on letting us go today anyway, so not much harm done I suppose!

Yesterday we were told the numbers looked great and we would likely not need to come back to the craniofacial clinic ever again. That sounded pretty darn awesome. Unfortunately, we learned that last night his pressure spiked 8 times, and we now need to meet with the whole team again to determine next steps :/ We are pretty bummed about the outcome at this point, but look forward to learning more from the experts in a few weeks. We trust God’s hand in all of this and are so incredibly thankful for all of the thoughts and prayers we have received over the past few days!


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