Monday, May 29, 2017

Day 11 - 12 May 28-29

May 28:

Lazy Sunday.

R did good today and even better with his aerobika.  It's amazing how much progress he has made with it here.  I do believe some of it comes from the oxygen nebulizer vs air at home.  Either way, huge success.

He is still refusing to eat much of anything other than the occasional orange slice. So thankful that web made the decision a few months ago to get the gtube. It has been so resourceful and prevented various exacerbations.

He weighed 13k, biggest weight yet.

His cough is gone and his lungs are clear.

Today I really missed being at church.  I missed the people,  the learning,  and even the dirty pew. I thought about what my prayer request would be and tried to sort through all the praises in my mind.  Being in the hospital is mentally hard asks takes your heart and mind to scary places.  Thankfully,  I have my God and i know he has a unfailing plan for mine and r's life. I couldn't make it through a single day without  my faith. I can't wait until we are able to return to church and I can share Christ's works.

May 29:

Finally, poo!  Today r took a 15 minute nap, insert overly exhausted sign here, which was rudely interupted by his tummy roaring saying to go potty. It was very uncomfortable for R but he survived. Woohoo. (I thought last night he was going to do the deed because he tossed and turned all night. You could tell his tummy was causing him issues... my obvious thought was, "oh no, he has the virus" but I kept pushing that aside and rementioning that he just needed to poo. Ha! Either way, he worked it out without any nasty meds and is good to go!)

Today was a long one... r refused to nap. He was hateful and honestry so was i. We were both tired and didn't have some of our most favored nursing staff and that resulted in us being very aggatated majority of the day. Thankfully though, no matter how difficult we can be, - together we always manage to laugh and have a good day.! I am always encouraging r to express his emotions. I often remind him it's okay to be mad and upset but it's not okay to let it
A. Ruin your day
B.  Hurt other
C. Deliberately be ugly.
We are in 100 % control of ourselves, our actions, and our joy. Yes, today was rough. Yes, today I watched more tv and played less legos. Yes, today I cried when my dear child wouldn't nap and he was smacking me in the face with a stethoscope. But hey - I found joy when together he and I beat level 55 in angry birds. I found joy when the nurse delivered our orange slices. I found joy in the endless hot water during my shower. I find joy holding my tired little boy as we watched Moana for the 447x time. I found joy in his smile and in the way he says momma. I found joy in him learning to make his kiss pop against my cheek then repeatedly ask to do it again.

I found joy in this difficult day because it's my joy to create. I will create for myself and my child a life full, literally overflowingly full, of happy overwhelming joy.

Weight today was 12.6k
Temp was alittle higher than normal, 98.9 [97.2 normal]

Our pulmonary doc will be here tomorrow and should talk about our plan to go home. I'm hoping before we go to do another culture to ensure his lungs are clear, check out his tonsils to see if they have shrank, and a possible xray to check out the sinus diease and get a final look at the lungs before departure.


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