update

Time seems to be playing funny games with my mind. A friend told me last night it was Friday night, and I didn't believe him! But I guess he was right. Sorry I haven't been fabulous about updating you all.

 

So, a of last blog post, we had come out of surgery and were in ICU...

 

Thursday was a long, sleepy day. For Nat he had been in the OR for 15+ hours and his little body was trying to process all of that anesthesia. For me I had been awake for 41 hours out of 48, so I just needed sleep! For that most part that is what we both did, sleep.

 

I was reminded on Thursday that I think morphine might not be the best drug for Nathaniel. Poor little guy couldn't stop itching!! So then he had to go on benedryl to fight the itching.

 

Also, on Thursday we saw just how many pressure sores Nathaniel has from laying in the OR for so long. The worst in the sense of annoying is on his chin. He keeps touching it since it bothers him and it keeps opening back up. But he also has them on his chest in a few places, on his thighs and on his wrist. So we have been watching those carefully.

 

By Thursday afternoon, Nathaniel was ready to start trying some clear foods. He Has some jello around 1:30 pm, then he talked someone into pudding a little later, but the problem came with the apple juice... the apple juice that caused EVERYTHING to come right back up... ALL over mommy. From head to toe, across the room, even got the curtains! This kid... he never does anything small! Thank goodness for family house, and warm showers because Nathaniel played this game on me for a few hours! He made QUITE the impression on the PICU nurses! So by midnight Thursday we had pulled him back off anything by mouth.

 

Through Thursday Nathaniel also struggled all day with pain. We were trying all the time to find something to help with the pain and not make him itch like crazy. Around midnight, Gramie took over bedside sitting and I head to the family house for a few hours sleep in a real bed.

 

Friday dawned with me more rested and ready to get this healing moving. Unfortunately not so much for Nathaniel. Because of the struggle with pain, his medications were changed once again, and he slept pretty much ALL day Friday. We could hardly wake him up until about 6 pm. That was a bit hard on me. Also, on Friday morning Nathaniel's temperature kept spiking high, his incision was leaking and his urine was off so he was started on some antibiotics.

 

By Friday around 3, Nathaniel was deemed ready to escape the PICU! Since he is on nurse controlled pain pump we had to go to surgical floor, so we are now located in what is called 3 Surg. It is a large open unit, somewhat like the PICU, and VERY LOUD. Kind of a bummer since non of us can rest well, but it is what he needs right now. Please pray for all of these screaming babies!

 

FINALLY around 6 Nathaniel woke up some and was able to talk to us. This was a HUGE relief to my as I was very worried about how out of it he had been all day. He woke up enough to talk to his sister and watch a little TV with her.

 

 

Also about this time Nathaniel decided he wanted to try food again. So I ordered him a dinner tray. He had the super nutritious dinner of chicken broth and orange sherbet. And THANKFULLY he kept it all down all night!!

 

The biggest source of frustration for us right now seems to be the MRI. On Thursday afternoon an MRI was ordered. They need to check and make sure that all the cysts were removed, and they also still need to image the brain to make sure that none of the cysts have made their way into his brain. On Thursday, when the test was ordered they somehow managed to not get it done, but we were promised to have it done on Friday. Every time I turned around they were rescheduling the test. At the end of the day it still wasn't complete and I wasn't too happy. Once again I have been promised that it will be done before noon today. And I am REALLY praying that this happens. Until the test is ran we are completely in a holding pattern, and that is just... not so productive!

 

It is now Saturday morning, and I am going to  TRY to keep up with my days! Nathaniel had a good night last night, rested well, and his fever seems to have gone down. We are ready to see what today brings. Hopefully it brings an MRI and clarification of whether or not he needs more surgery! We also just learned that tomorrow he can sit up if everything goes well today! I am sure he will like that!

 

Through this journey I have had a supernatural peace that has been beyond amazing. Last night I had a rough time. I waivered in my strength and allowed the enemy played mind games with me. I spent much of the night in prayer and feel more peace today, but would appreciate prayer for clarity, focus and strength in my convictions. I love all of you who are holding us up to His throne in this journey. God has truly blessed me with amazing friends.

 

The other area I would beg for prayer in is a little tougher. Nathaniel's father has said that he will be here tomorrow evening. I can not deny him the right to his son, after all biology makes him his father. But I am concerned about the implications and stress of having him here. He destroys my peace by walking into the room most days and I just don't have the energy to loose focus on the journey that we are on. Please cover Nathaniel and I in prayer over this situation.

 

Thank you all for walking this journey with us, we love you!