over the last three weeks Andrew has just been "off" to me. I spoke with my pastors, began the trek in getting our hearts and minds in a good place and was just told to "rest" three weeks ago. Ive been forcing myself to go to sleep at 10:30-11 each night and was just told to take care of momma, so she can take care of those entrusted to her.
I told one of our pastors I just "felt" like it was time to get our faith in a better place. Lord knows my husbands struggles watching our son suffer all these years. He's in a better place now with that. Gods placed some awesome people in his life. :) just fyi. I began weighing what was most important in life and spending a little more time with my kiddos than usual. Letting house chores sit a little longer, and Andrew and I have had a lot more play time in, time outside, and the night before we were admitted I just wanted to be with him. I had plenty of other responsibilities, final exams, and research papers due, but I just felt the need to go outside this night and swing. We lit the torches and began to swing and he serenaded me with twinkle, twinkle little star. :) The last week Andrew has really been having a hard time catching his breath or he would just start deep and heavy breathing randomly. His hands and feet stayed blue, and his pretty pinkish (as we can get) little lips began staying purple and blue.
Its been two years since any admittance to CHOA so all that began flooding back and the anxiety that comes with it. This time though, God has placed a team of loving church family and pastors and more friends to keep the anxiety at bay. I know how great and good our God is, but its hard to tell the human mind to remain focused on that fact. Thank you Lord for your love and grace and for continuously chasing after me when Im so far from perfect.
The team here knows when we call for an urgent add-on visit that we mean business. We have always maintained well at home when episodes or illnesses start, but this time I just have had the unsettling feeling. I began monitoring him last week with his vitals and watched his heart slowly increase, and his oxygen steadily decrease. I began voicing to show (ok maybe getting a little more panicky)Shaun each time I noticed these spells, and Shaun normally tries to talk me out of my craziness, but this time he began really getting concerned too. No matter what we did, hydrate, keep warm, make him rest...he just wanted to keep staying blue/purple. I told my motherinlaw Tuesday as we walked out to her van that hes just been off and I called to get him in the next day, and well...here we are.
In clinic in his urgent visit we got to see his old inpatient cardiologist Dr. Clabby. She knows us fairly well and can just picked up on our nervousness. She watched him cry the entire time in the appointment, through his echo, and when he finally wore himself out and fell asleep in my arms, she watched his color and picked up his little hand and said, he should have had his color back now. He still looks pretty dusky. I talked to Dr. Sallee, and he and I agree we need to get him admitted and a full work up and a heart cath done. There could be narrowing, some vessel clusters popping up on his lungs (decreased O2), or its just that time for surgery number 3. Shaun was visibly upset at this point and I just watched the anxiety flood his face. Andrew jostled in my arms from sleep and just said, "I hurt" at one point in the visit. His anxiety was HIGH.
Dr. Clabby gave me the look and asked if we came packed for a longer stay. Not prepared, but we had bare essentials, aka a one night stay bag. I rushed that morning out the door 15 mins late, but i was running through the house like mad trying to grab the necessities. Shaun convinced me we would be back so I only grabbed one change of clothes instead of going with my gut...I know for next time now haha
Ive been laying awake since 4AM. Listening to my sweet boy's precious sounds as he sleeps. It never gets easier. Handing him over for procedures, no matter how big or small. He always has a high risk. We know that going in, so I leave it at the Lord's feet. Im hoping we get answers today. No matter how big or small. I just want to know whats next. Your prayers are greatly appreciated. Thanks for letting me vent. This blog is a lifesaver when everyone I know is snoozing. :)