I have to apologize to all of you that tune into Mikeyslove on a regular basis - I just got mired in the details of life again. I've really had to start working again, as well as continue to push, push, push in all the places we know of to get Mikey home. To this last, I have to give Shell all the credit in the world. Any of you that know her, undoubtedly know of her extreme focus in life. Sometimes what she's focused on might make you really wonder, but as a mother, I've always had such amazing faith in her.When I was alone with Shell in her ICU room, we had dozens of conversations that she doesn't recall now - and if they weren't so beautiful, I'd honestly be happy she remembered none of what happened. One that really comes to mind now is about having to live without her - something she actually brought up to me. On her mind was how I would take care of the girls, and making sure they stayed on their routines, went to dance, played softball, and did the things that she had built around their lives as comforts, challenges, chances to learn and live. She asked me several times if I could do it on my own without her, because she didn't know if she'd be able to fight more; it seemed so endless to her.
I told her I'd honor every request she had, only with her right by my side and that I would not give in to the idea that she might not be here with me. I had a baby in an ICU that as much as I love him so deeply, I also know that without her I'm half the father I am today.
I honestly know deep down that Shell reared back and threw herself another fastball to get out of the inning when she realized both that I wasn't giving up on her, and her family needed her. At the time some of her expressions were sort of muted by the tubes and being tired and in pain. But the resolve on her face when we agreed that
she'd fight was overwhelming. I felt so weak and small next to her, yet she was the one that couldn't get out of the bed. I felt crippled by everything happening around me and she seemed so damn tough. Those of you reading this - next time you think you shouldn't go exercise, shouldn't get a better grade, get a better job, learn something new, work harder with your kids - rear back and throw your best stuff. That's the time to pull out all the stops. Mikey certainly is. My wife has taught me so much, but this lesson is one of the more important.In that same spirit, I have to tell you that the fortunes we've had with finding some nursing and springing Mikey from his jail cell are all to her credit. Her story, her spirit, her fight have all brought us further than anyone thought we could get in this timeframe. I owe so much to her - I'm just so thankful she's here to help put our family back together again.
Here's where we're at:
We have an afternoon/evening nurse, from 3-11pm, 7 days a week. We have a night nurse from 11pm to 7am, 4 days a week. We have one nurse that has gone after her own medicaid number to help us out and she's going to help 40 hours a month to help with appointments and day time things.
We have Early Intervention setting up 5 days a week of OT, PT and 3 days of Speech pathology (mostly for swallowing problems) and a special ed teacher every other week for a day.
That comes to 25 and a half visits a week by medical and therapeutic professionals into our home! Does anyone know how to install a revolving door? :)-
We have a best possible discharge date of next Friday - the 18th of May, Mikey's 3 month Birthday. We're waiting for news from Albany on the paperwork, but as we understand it, since the county has approved it, it's mostly done - we just need the formal sign-offs.
We've had our humidifier (aka boat motor), suction machine (aka lawnmower) and box after box of medical supply dropped at our front door and setup. We've got the apnea/bradycardia monitor sitting cribside so we can practice with it in the hospital. We've had to have a med training to dispense his medicine, infant CPR, monitor training, 2 trach changes each, been certified by the nurses as completely competent to care for Mikey, and on Monday we're doing our first G-tube change (something you do every three months). Also on Monday morning we're having his manhood trimmed, so to speak. Shell's OB that saved her life is coming over special to do the procedure.
Hopefully by his third month birthday, we'll be bringing him home and ending this first phase of his infancy. We can all agree it's not ideal, but the second phase is going to be more loving, caring, supporting and nurturing than he could ever imagine. And with the progress he's been making at the hospital, I expect to see leaps and bounds here at home. I'm not rushing to say how far we'll get, but improvements will keep happening.
The other day, our Neurologist did his biweekly exam and found that Mikey indeed is showing a gag reflex - about a 3-4 out of 10 - but previously it had been a 0-1. While he didn't respond to light flashes in a couple previous tests, he did this time! And everyone of us that knows him and spends time with him knows he hears us. Last night when I went into see him, I walked silently over towards his crib and went to the side where he wasn't currently looking and started talking to him. His eyes opened wide, and he got all his limbs moving and rolled his head right over to the sound of my voice. He knows when I'm with him, and as his Daddy there's nothing more special than having this little boy acknowledge you're there by relaxing right in front of you.
