Tuesday, February 21, 2012

A Miraculous Mystery Named Gavin...

It's time for me to get back on track. That, for me, means making sure that Mommy is taking care of herself. And that means - getting back to Dr. Trish. If you're new to this blog, I've written about who Dr. Trish is in previous posts like THIS ONE. She is very special to me...and to our family...and especially to Gavin. I have been suffering with pretty serious blood pressure issues for the last month. I'm on my third medication which is just absurd. The first made me feel so sick for about an hour or so after I took it - and I had to take it three times a day. It was then changed to a long acting medication that I could, thankfully, take once a day - at night. Well, with blood pressure readings of 175/112...it clearly wasn't enough. So I googled a Cardiologist and booked an immediate appointment for myself. He promised me that I'd be okay...allayed my fears that I'd have a stroke at home alone with the boys...and put me on a twice a day beta blocker called Labetalol. And he admonished me for taking my pressure rather obsessively at home. So no more of that fun. The new med makes me feel very sluggish...and kind of out of it. For this...and several other obvious reasons that I haven't been shy about in this journal...I am back to seeing Dr. Trish. I'm also bringing Gavin back for regular visits. If you remember, each week that Gavin would see her he'd make a tremendous gain in one area. I can't wait to see what he does this time. I'll be going twice a week - and Gavin once a week.

Gavin saw Miss Maggie today for his feeding therapy. It's the one area that he has made such slow progress. He just resists eating solid food and we're running out of ways to trick him to do it.

Today was no exception. I try not to get down when Gavin seems to be at a standstill with any of his therapy. He has come such a long, long way. And frankly, so have I as his Mom.

After last week's transition meeting with our school district, I have been sweating over a form I need to fill out for a Psychological evaluation. For Gavin, thank God. A Psychologist would need HAZARD pay to evaluate ME!! This form brings me back to my previous pregnancies and losses...my pregnancy with Gavin...details of his life after he came home from the hospital (Ummm...can I add four extra sheets?)...and tons of other questions that require lots of thought, lots of pen ink and lots of deep, cleansing breaths. I was grateful to have Miss Sara downstairs entertaining Gavin this morning while I hid in my bedroom so I could concentrate on these forms. Pages and pages of questions. But it got me thinking...I wonder what we were doing on this day way back when Gavin was a baby. He would have been five months old. When I went back to what I wrote on this day in 2008, I saw that we were still in the hospital. We were nearing the end of an eight week stay and I was close to the end of my rope. Gavin was being tested for possible Mitochondrial Disease. It turned out that he does not have that, but it was a scary proposition by his doctor. When I re-read this post - it broke my heart. But it also made me feel so, very grateful. We really have overcome so much...and Gavin has surpassed so many expectations. I could never adequately convey in this Psychological evaluation how amazing this child is. Or how much is in store for him in this life.

Enjoy this walk down memory lane...

I've always been honest in this journal - so I won't make tonight an exception. I nearly cracked tonight. I wrote my journal entry early because I knew at 6pm the doctor was coming in to do something painful to Gavin and I didn't know how the rest of the night would go down. Well, it didn't go down well.

I'm not going to go into what they are testing for because if it turns out NOT to be this, then nobody will have worried for naught. But, the doctor had to draw arterial blood gases to test for this. If you don't know, they take blood from the artery on the inside of your wrist. And if you've never had it done (I have) it's painful - even for a tough adult. So I prepare the crib and help both hold Gavin down and try to comfort him at the same time as the doctor takes the blood. Gavin screams in terrible pain - it's not coming out so the doctor keeps trying...Gavin is hysterical and it's hard to keep him still...the doctor KEEPS trying....then he gives up. Time to try the other wrist. So I pick him up and try to comfort him - then I lay him back down and hold him down again. The doctor starts to try the other wrist and before he can even get the needle in, Gavin - who is already hysterical - throws up. Then he starts to seemingly choke on it. It is so painful to watch knowing there is nothing I can do. We clean him up and lay him back down...he tries again. Still can't get enough...we'll have to try again tomorrow. The VERY nice doctor and the VERY nice nurse leave the room and I am alone with my son. After a half hour of screaming his stressed body just shuts down in my arms. He's like a zombie and even though I'm holding him, I feel the need to check him constantly to see if he's breathing. I am completely sobbing the entire time. I want to go back to grade school when I didn't have much to worry about. I want to go back to high school - and I HATED high school. I want to go back to being a flight attendant and travel the world. I want to put Gavin in his car seat, tell the nurse I'll be back in a few hours - please watch him - run out of here and drive to Nordstrom and buy an insanely expensive dress to wear nowhere. I want to stop being a Mom...just for the night. Just as quickly as those obviously not really meant fantasies run through my mind, Gavin wakes up crying. And screaming. And moaning. And screaming some more. I try to rock him. I try to bounce him. I need to feed him and he'll have none of it. It's not an option because he needs the calories so it goes in the tube and he cries through it all. After that's done, I put him in his stroller and push him back and forth in the room - pacing like a caged animal. We can't leave the room because he's on isolation precautions from the rotavirus. I try to sing to him, reason with him...not knowing if he can hear me. Quickly realizing that he couldn't hear me over his own screaming. I've never felt so insecure...so helpless...so unsure...so sad. If anyone had come - anyone - and offered to hold him, I would have quickly grabbed my coat and left. And I never do that - ever. I would have driven to Walgreens to buy soap or lightbulbs or milk....nothing, but somehow something I need. I'm clearly losing it. But if anyone had shown up, even Mother Theresa herself, I wouldn't have left. I love this child with a fierceness I have never known. I love this gorgeous boy who now plays with his feet and shows me dimples and makes me smile. I adore my son who is a mystery to all who treat him, an enigma to the best geneticist and best doctor at DuPont. I would give my life, if asked, for this boy with "bilateral sensorineural hearing loss, dysmorphic features and severe reflux". I have been given a child who is a miracle - yet a mystery to everyone but God. I will learn something great from all of this. And tomorrow I will be fine. But tonight I want to quit being a Mom. And that will have to be okay...just for tonight, especially since the night is nearly over. Gavin has finally fallen asleep - so I will go eat my dinner, get in bed, and pray for tomorrows blood draw to go better, for Gavin to be peaceful and for me....for strength.

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