Thursday morning: "I'm going home I've done my time" ...
that line from that tune from my childhood keeps repeating in my head. And all I can say is "It's about time."
3 weeks ago when we got here, I was worried they'd send him home too early, without seeing the problem. Then Dr. Jolley "got it" and I knew we were good.
Then they worked tirelessly to get us an "adequate source of nutrition" and tried to avoid TPN. He even told me that they would plod along scientifically and he wasn't in a hurry to send us home until *I* felt comfortable with the decision.
And I can honestly say ... today is the perfect day to go home. Not one day too early or too late.
So in about 2 hours, he will be disconnected from the TPN for the drive home. 3 hours home. The nurse and supplies will be there. Training. Reconnected.
And so life with our new normal begins.
Friday night: We've been home just over 24 hours now as I write this. Hospital life and home life collide hard. It feels like one is running clock wise and the other is running counter-clockwise and when I try to merge the two worlds, a tornado ensues.
Like since being home ... Manny took a 2 hour nap on the way home so he wasn't exactly ready to sleep last night. I was ready to collapse and he wanted to play. Then he screamed (pitched a fit) for almost 2 hours as I was about ready to cry I was so tired. Dan was out jogging (he didn't get to do that while we were gone since he had Zoe and couldn't leave her here alone). Manny woke up many times during the night to be repositioned ... he did better in the hospital bed so I might see what I can do to find something more like that for home.
Then this morning ... just trying not to drown in all that has to be done. Steep learning curve on some things. Run around with insurance things. Denials of meds that he needs. Working out appointments. Rescheduling ones we missed in the 3 weeks gone. Getting Zoe squared away. Cleaning up the house enough for nurses to come to our house and not condemn it. Trying to get Zoe over this cough she has. Dealing with children who have been motherless for almost a month. Trying to wade through the laundry that got tossed in the rooms as my sister was trying to help pack up the boys. Scrambling for dinner without going to the store. Bank run. Pharmacy run. Post Office run. pick up Jacob at my parents. 2 nurses to come by today to check on him and check on him. Not help, just ask questions. (That's a few things I did today.)
But on the positive side ... it's 10pm and everyone is asleep. I was able to get the TPN connected and disconnected and reconnected all by myself. (Even got the nurse's stamp of approval.) My kitchen is clean and staying that way. We made a small dent in the laundry. We cleared a path in the girl's room so we could walk in there. Had a healthy dinner of baked fish, rice pilaf, fresh steamed spinach with sauteed garlic, sauteed onions and fresh bread along with raw veggies. (I missed good food at the hospital!)
In other words, I survived the day! One step at a time. Plod through. Before I know it, I'll be back in the full swing of things and doing this stuff in my sleep.
And for now, I already can't believe it was almost 3 weeks gone. The memories are already fading on just how sick he got and how the heck we survived those 7 weeks of torture until we got to Gainesville.
We are all (including his doctors) hoping for a miracle. Hoping that his brain and gut all start working together in unison. We are also all at peace with our decision to go to TPN.
Except for being a little skinny minnie (and a shorter temper) ... Manny seems no worse for the wear. His heart rate is down, he's not retching or coughing or congested. His oxygen levels are perfect. In other words, ALL his issues were related to the food and the inability to process that food! So without food in his belly, life is "good".
Very grateful to all of you! I know most of you read and dont' comment. (That's fine.) I know you pray and you talk about Manny to our heavenly Father. And I KNOW that He hears you. I am asking God to bestow many, many blessings on each of you. You're lifting up this precious little guy before the Throne of God. And I do the same thing ... I might not know you or know your name. But I know God hears your every prayer and I'm asking Him to return the favor.