Sunday, April 22, 2007

"Medically Ready to Go Home"

OK. We've officially heard the news. Mikey is medically able to come home, IF and ONLY IF we have nurses ready to go.

We don't.

After two rounds of solicitations by our service coordinator, SKIP of NY, to all the nursing agencies in Erie county, they've heard nothing in response. Not even a "Can you tell us more about this little boy and his family?" Nothing.

Medicaid has been applied for and we're waiting for decisions on the Care at Home Waiver being approved. This is the special clause in Medicaid (In NYS, anyway) that allows those who don't qualify for Medicaid outright to be able to get assistance paying In-home nursing. (I think if you make more than $100/week you don't qualify for this, either)

So, while we wait for nursing, Mikey lays in a blue metal crib in a room with 5 other babies of varying illness, germs, and the like. He lays there with his mist collar on, looking at his mobile waiting for someone to take him home.

We had hoped for Mother's day. Neither one of us think that's possible. We're trying to be hopeful for Father's day. And he'd better be home before my birthday in late July.

What hurts me the most is the pain I see hidden behind my wife's eyes. What hurts is that when she was laying on that bed dying in front of me and I told her she had to fight and fight hard, I told her I would bring her home to her baby. I told her if she could fight, I'd never leave her side and I would be there to bring her back to her family. She did everything I could have ever asked for, and I have let her down by not being able to bring her son home to her.

I know many of you reading this are going to post comments or call me within minutes of reading this and tell me I didn't fail. I know that I've done what I could have done - but it won't make the hurt go away that I can't bring him home and put him in his Mommy's arms.

We need nurses. If you know a nurse, call them. Tell them. Give them the link to this blog. Ask if they know anyone. Please.

Mikey needs to feel the sunshine on his face for the first time.

He needs to feel the wind blow warmly over him, while he listens to his sisters play in the yard.

He needs the dogs to kiss him.

Mikey needs to feel his sisters' embraces.

He needs to take naps laying on my chest with the Yankees playing on the tv on a Saturday afternoon.

Friday, April 20, 2007

Mikeys journey so far....

I made this tonight, after an especially long day. For all of you wondering, this week has been kind of crazy and things really came to a head with the folks at the hospital. I, unfortunately, didn't maintain my composure on Monday when I found Mikey on the floor sitting in a bouncy seat...and it didn't go much better from there. I was in the wrong for not addressing my upset more professionally - but it made for a long week. I haven't gotten to a place where I can write all the events down, but I will.

In the meantime, I put my midnight oil to work on a little movie about Mikey's Early Days. Hope you enjoy it.

Wednesday, April 18, 2007

A voice for my heart.

"Remember When It Rained"

Wash away the thoughts inside
That keep my mind away from you.
No more love and no more pride
And thoughts are all I have to do.

Ohhhhhh Remember when it rained.
Felt the ground and looked up high
And called your name.
Ohhhhhh Remember when it rained.
In the darkness I remain.

Tears of hope run down my skin.
Tears for you that will not dry.
They magnify the one within
And let the outside slowly die.

Ohhhhhh Remember when it rained.
I felt the ground and looked up high
And called your name.
Ohhhhhh Remember when it rained.
In the water I remain
Running down
Running down
Running down
Running down
Running down
Running down
Running down

-Josh Groban

I feel when I'm away from him that I'm wrong for not being at his side -even though the rational part of me knows that I have to be away and doing the rest of life, taking the girls places and making school lunches and all the rest. The lyrics are a bit 'open' to interpretation, but the vocal gives my heart a voice and that's what's important.

Here's a video and explanation from him on the song:

This one is a great recording of him doing the song live in Houston, TX.

Tuesday, April 17, 2007

A note from Mommy

As I sit here tonight trying to write my first blog
entry to all of you who are so caring and interested
in how our family is doing after the tragedy that has
flipped our future.

First off, I would like everyone to know how wonderful
my recovery is going and I thank you from the bottom
of my healing heart to the numbness in my feet for
your prayers, thoughts and outpouring generosity you
bring. Coming up on Wednesday will be two months from
the day I went into the hospital to have my beautiful
baby boy, Michael and the day that would be a turning
point in my life.

If you would have told me that I would at 35 yrs old, be
stripped of the many joys that pregnancy and delivery
can bring and almost all of my organs failing and
having a 4% chance to live as a result of a most often
fatal complication called AFE, I would have freaked
out at first but then said, "bring it on."

What I've realized is that I love being a MOM. I will
always attribute my strengths and my drive, my purpose
for being on this earth is to raise my 3 beautiful
children to carry on my love of life. What I didn't
realize is how important a role my husband, my best
friend would play in this. He is the like the cane I
use to balance me. He's like the blanket I use to
warm me. He is the "rock" I use to lean on when
everything I know seems too much. His support, care
and unconditional, unexpected, unbelievable, love has
made me the happiest and luckiest girl alive.

What happened today at the hospital was so
unprofessional, so hurtful, that I want to wait for a
day to sleep on it and write with a fresh mindset.
After I wake and thank God for another day of life.
How precious each day is to me now. I really wouldn't
change anything. I have everything I've ever wanted
in my life...wonderful family, great friends and
people who love me.

Good night and in the morning take a minute, look out
your window and whether it's raining, snowing or
sunny...just thank God he gave it to you.

~Mommy (Shell)

"Miracles happen out of love."

Sunday, April 15, 2007

Information can be misleading

This hospital stuff is all new to most of us reading (and writing) this blog. Most of us don't frequent the hospital world and most of us don't know the difference between an 8 French Catheter and a foley. Unfortunately I know what both are and they both suck. ;)

One of the things I realized very quickly after all this mess happened to us was that the Internet was not going to be a good source for me to learn anything. Assorted versions of information available about what happened to Shell and Mikey were not organized, filtered, unbiased and sometimes just plain old inaccurate. So I stopped reading after the first night because for my own sanity's sake I had to put some trust in the docs and just ask all my questions of them.

I also know that isn't a perfect strategy either - being armed with good information so that the docs talking to you get a quick sense that you're 'with it' and they're able to give you the straight poop (and nothing but the poop, Ma'am) is important. It's also important to know what meds your sick family member is on and how they work and why, etc. Since Shell's been home I've read ALL of it and drawn my own conclusions - most of which is the same as what I learned by just being with Shell and the doctors.

What isn't good is reading reviews of obscure medical studies that conclude this or that about what happened to us, what will happen in the future or who's fault anything is. You never know what kind of drugs the author may have been indulging in at the time of publication, either.

We know that the AFE/DIC could have happened to any pregnant woman at any time. I've seen somewhat unreliable sites and folks say that maternal age, inducement, sex of the baby (it happens statistically more to baby boys than girls) all can play a factor. What I've also learned is that this condition can only be a confirmed diagnosis by performing an autopsy on a woman - something we're plenty fine with not knowing. ;) When some site says the 'risk is elevated' under certain conditions, the ultimate interpretation is they have no idea what caused it, but of the women that had it, so many were taking this drug, doing this thing with their left foot, a small percentage were scratching their noses, rubbing their eyes, thinking about their normal lives and the list goes on.

I also know that ultimately it was our OB being prepared for an event like this and having read an article on it a week prior to February 18th, when our life got dumped out like kids toys on our playroom floor. He called this within a few minutes of her presenting symptoms and did the C-section KNOWING that she would go into DIC and as such had to stitch her up tighter than Fort Knox. Plain and simple, he kicked ass and saved Shell's life. Even when she went back in for a 'clean-out' to remove the infected fluid in her belly, the uterus was perfectly intact and looked good. Incisions and stitches were perfect. For that we're eternally thankful.

That's about all we need to know about AFE.

Saturday, April 14, 2007

Lucky little boy

He's going to wish he could find three pretty sisters to kiss him when he's a teenager. :)

Mikey's had some good nursing, and good loving from his family. Thanks to everyone helping him get out of that depressing hospital.

We're starting to try to spread the word faster about needing nursing for Mikey - LPN's are what we're really looking for. Please spread the word to your church, schools, doctors offices, whoever you know. I think all they need to do is meet the little man and they'll fall in love! We just have to find them and make introductions.

Thursday, April 12, 2007

Moving better and better

Today was pretty neat. Mikey was moving so nicely. It just seems like you're looking at a different kid sometimes. I'm learning when he's not being stimulated, he's much much looser and calmer. I think that's going to be important when he gets home, not providing too much sensory stuff he can't yet handle. All in good time.

Some cool video from today...

Wednesday, April 11, 2007

Quick update - update to the update.

Shell and I went to the hospital today for Mikey's 2nd MRI. The Doc was hoping to discover something that might explain some of his muscle spasticity - but likely nothing is going to show, as was the case at the last MRI.

So we were told to be there at 6am for the test and we could be in the room with Mikey for the test and it would take 3-4 minutes.

We show up and aren't allowed in the room ("Sorry charlie, you got the wrong info from someone") and it took 30 minutes.

At least he had earplugs and was pretty well sedated. They seem to love the sedatives over there. Ah, he's just a baby - let's dope him up! That'll make it easier for us to do our jobs! Whatever.

Shell and I put up a few requests today that I think have everyone scratching their heads. We asked for the head of the hospital to sit down with us and go through the (tragic) comedy of errors these folks continually put us through as well as a full care plan from all the docs involved in Mikey's care. It's kind of funny how everyone said how hard that would be! Can you imagine! Yes, your son doesn't have a plan, we won't make one and getting us all in the same room at the same time to discuss you? Come on now.

Apparently Doc 1 is only free on Tuesdays. Doc 2 is only free on Thursdays. Doc 3 and 4 are on vacation for a week and Doc 5 is switching services so another replacement Doc (5a?) that doesn't know Mikey at all will be coming in next week, so we can't schedule it until he shows up on Monday.

We came in specifically for rounds today and guess what? Our attending doc didn't show up, even though we specifically asked for him. We were told he'd be in during rounds and then didn't come.

So we're hoping for NEXT thursday to sit down and discuss what has to happen to get Mikey out of the joint. At least in prison you know when your parole hearing will be.

On some good notes, Shell and I are getting much more comfortable with suctioning the trach, feeding him on the g-tube and basically caring for him. And for all of you looking for nurses for us, we only need an LPN for trach work. No RN required. That /should/ make it easier to find an agency. I hope. For any of you with any leads on nurses PLEASE send them over to me at mikek at thinwires dot com. (That's anti-spammer lingo, of course - you put the symbols and dots where they belong;)

Speaking of nurses - we've experienced quite an upturn in the quality of nursing we've gotten. It seems that we've found a cadre of nurses now that are regularly attending to Mikey when they work and it seems as though they've all learned his signs pretty well. Thank goodness - I was starting to think I'd have pot luck forever. Joyce in particular has been awesome at training us at every little bell and whistle on the boy. I am really comfortable now with caring for him - at least how to, maybe not the intensity - on my own now. I could clean his trach, change the collar, suction him, even help him come back from an episode where he desaturates a little bit.

Sunday, April 8, 2007

Sometimes you don't see it coming.

There's things you do with all babies. Their first Easter, 4th of July, Christmas, New Years, Birthdays. Although today turned into a day I ended up happy with, it certainly had it's bumps and bruises.

After getting to mass late today (some things even a near death experience won't change, ahem, ahem, Shell!) we sat in the church gymnasium for the 'overflow' mass. So, ok, the chairs were actually more comfortable and there was plenty of room. I'm thinking, just get through mass, don't cuss in your prayers and make sure the girls behave themselves.

Then we stand up for the introductory hymn and there he is. A little boy in his father's arms wearing a corduroy blazer, just like ones Mommy bought for Daddy and Mikey at Christmas time. His remains hanging in my closet, waiting for the little man to fill it out properly. This boy looked so perfect, so healthy, so cute, I actually started to lose it in church. Tears coming down my face, I point him out to Shell and she realizes in a second what I was upset about. As I thought, "I can't do this right now. I have to get out of here or I'm going to pass out," I looked at the girls and realized I'd confuse them and make them worry for no reason. So I sniffed it all away and started trying to distract myself.

Then the boy caught hold of my red teary eyed face and would not stop looking me right in the eyes. Oh man - he was just so perfect in his Daddy's arms. I wasn't mad, wasn't wishing for anything else other than to have Mikey in a car seat next to me, crying because the suit blazer we put him in was making him sweat. Honestly, mostly what I was thinking about what that at least that boy was OK and here in his Daddy's arms. I thought I might get jealous or mad, but that didn't really happen. I just kept thinking my boy is strong enough to handle anything, but we all wish he didn't have to prove it.

The little boy in the blue blazer and I got along fine though. I started making funny faces at him and made him laugh. Then he started frowning back at me (which I of course copied back to him) and he laughed again.

After the homily, Shell hands me this index card, where she has written me a note:

"Miracles happen because of love, and I am here because of you."

I feel the tears coming, but I look at her thinking I'm just going to smile and tell her I'm happy she's with me when she says, "Flip over the card."

And there's Mikey's footprint and birthdate staring back up at me and I lost it again.

It's so hard to try and remember how and why I could keep on going and going when Mikey and Shell were both in the ICU's, and we didn't know if either would live. I remember thinking that it was an impossible situation - kind of my Kobiyashi Maru - I've linked it here for any of you non star trek folks reading this. Most of the time the only way someone can get out of a no-win situation is to cheat. There is no cheating at this game, though - you get trampled sometimes no matter what.

Then we went to Shell's Mom's house for Easter. The whole way I was hoping I could make up some reason why I could go see Mikey or better yet go home and pretend the whole day wasn't happening. Alas, we get there and I see everyone and it's ok. Shell's sisters and Erik and Doug have been really great to me, especially in the hospital - I can feel the comfort they wish they could give us. It's so obvious we're loved and cared for. I have yet to think of anything in the world I could say or do that would let them know how much I appreciate them all. Words really suck sometimes. They just don't seem like enough. For all the folks that have helped us, I've been realizing we have no way to repay the debt - I think it's more our job to 'pay it forward' when the times arise in our lives. You can all count on us for that. I only hope what we can give, when we can give it will be enough.

Mom made a great dinner (no quiche rules!) and things were really kind of nice. Pretty laid back, and as I recall there weren't any tears from any of the kids, which was like an extra cherry on a sundae.

Dawn, Erik, Shell and I went up to see Mikey afterwards - what a really nice visit. It was pretty tough at times suctioning him and trying to read what he was telling us - pain, diaper, etc. What was really cool was stepping back and watching Dawn and Erik hold his fingers for a while towards the end of the visit. They both just kept soothing him and keeping him resting nice - I can't tell you how that melted my heart. When I think about all the weird looks we'll get when we finally do go out in public with him, it's so so so nice to know all of his family loves him and accepts him with all his tubes and wires. The thing is our "normal" isn't going to be other people's "normal" anymore. It's not going to be about seeing if our two year old does the same things as another two year old. It's going to be about Mikey doing things that make the rollercoaster ride were on a little more enjoyable.

Happy Easter to all of you reading this. I think you can see from the Sitemeter near the top of the page, there's quite a few of you reading this everyday. I'm shocked and amazed, but mostly happy to know that this way of communicating is helping so many other people besides us. I've been told it's helping others that have been hospitalized, made husbands and wives look at each other differently, hug their kids a little tighter, and maybe see the good there is in this world. For all the anger I know is buried in my heart about all of this, I really do see good through the dark clouds here. Thanks for helping me with that.

Anybody need a weight lifting partner in Amherst? This anger has to come out somehow. ;)

Thursday, April 5, 2007

A little treat

Since we had such a nice visit tonight with Mikey, I was inspired to share a very special little video clip I took of Mikey last Thursday.

This is an example of a small thing turned into a huge thing.

Take a look:

A chance to feel like Mommy and Daddy...

Tonight was a real treat - again, like my small things post, you need perspective to appreciate this.

We had an amazing nurse tonight - she let us bathe Mikey, help change his dressings, help weigh him, make his bed, and Shell got to hold him for 5 minutes. I will post a couple of pictures later - I didn't take the camera tonight, so I'm emailing them off of my phone. Could be weeks before they get here. ;)

The look in Shell's eyes taking care of her boy was awesome to see. She and I have been leaning on each other in the dark moments and it was nice to finally feel a calm, almost normal moment. I was sort of picturing our first baby bath - with Michailey. I remember the feeling of thinking she was so fragile that I couldn't possibly rub her skin that hard or worrying about the shampoo near her eyes, or that she would be cold because I moved so darn slow and clumsy all the time. Tonight I got a chance to see how I got through those times. Shell showed me. That was nice to see again.

Rita told us today that we'll eventually feel normal again - except normal won't be what it used to be. There doesn't seem to be any choice in the matter either, eh? I suppose each time things change it's an opportunity to see things in a new light and make new choices.

Sometimes when things are at their worst for me, I've realized that many of those times are when people say or do things to make me feel backed in a corner. When some nurse says "Well, you have no choice but to keep your son here" I could really lose it. Brings me back to Mrs. Tancrede's math class in 9th grade when she told the class publicly I couldn't pass the regents because I didn't do all of her homework (again). I just told her I'd be at the pizza party for the nerds that got 95 and above. She had to call my parents and apologize when she graded and regraded my exam and had to score it 100%. Pizza never tasted so good.

There's always a choice, and I refuse to be told "You have no choice." Every single person I've talked to with a child with a disability or a loved one that faced serious hospital time has said you have to be a strong advocate for them when they can't be. Trust my gut instinct, ask for second and tenth opinions, etc. I'm frankly pretty sure that any nurse or doctor faced with the same situation as us would be doing exactly that, too. Why is it that they are all so shocked when I question the medicines, or ask about when my son might not be sedated anymore?

Cheers to every Mom and Dad that's gone over someone's head to get more information, ask more questions, stop incompetence from hurting their baby, and any other incredible situation that parenting proved to be the answer for. When I used to work with special kids I had absolutely NO IDEA what their parents had to deal with. My hat goes off to everyone of those kids' Moms and Dads and families that took care of them.

Tuesday, April 3, 2007

Small progress...

Small progress. It's funny how you can warp your mind into thinking that things that used to be big are small and small things grow big.

  • It seems that Mikey's wounds are small things to the folks at Children's, but geez - a liver hanging out and a wide open wound seem pretty big to us.
  • Seeing Mikey's still swollen face and thinking "Man he looks really good to me" seems crazy in any other situation.
  • Asking the Physical Therapist and Occupational Therapist for a "Care Plan" that they simply must have been working from when they come to do therapy seemed to not only ask them to move a mountain, but more, to build the mountain, then move it six inches to the left.
  • Making sure the nurses don't call Mikey "My baby" in front of my wife seems pretty small to me. Judging by the looks on their faces, it could've been like telling them their own Mothers gave birth to trolls.
  • Asking for a Doctor to apologize to my wife for her having to find her son needing emergency surgery instead of responding to his pages 4 hours earlier is a small thing. Getting him to "man up" and do it - a big thing.
The list could go on, but I'll stop for now before that last one gets me going again. All in all, Mikey did look better to me than the past several days, and his color was much nicer, too. When I stood between his face and the sunlight today, he opened his eyes for a brief moment and caught my eyes, before fading back into his sedatives. That was worth the price of admission all by itself.

We're starting to go through quite a process in our home to make it really ready to bring Mikey home - something that's still going to take many weeks to do. It's starting to look like we'll need to make the front living room area a bedroom for Mikey. The nurses will need wide open, simply organized space to take care of our little man - and we'll want to hang out near him when we're home, too. Hopefully he can move into his room upstairs sometime in his first year - hopefully the monitors will be gone by then, too. I hear that kids with trachs get much better at not getting them plugged as they get a little older.

Speaking of nurses, it seems as though we have to integrate them right into our life. In the Care at Home book they gave us, we have to provide them places to eat meals, take breaks, put their clothes, etc. I gotta tell ya - this is not a process we're going to enjoy. How many of you have a house you'd want other people in 16 hours a day, everyday? I can't imagine what In home nurses talk about over their watercoolers...
  • "Yeah my family had a huge argument last night"...
  • "The mom and dad at my house did it 4 times!"...
  • "Do they ever clean the grate on the front of their refrigerator?"...
Can you imagine? I still can't even really picture it.

Btw - to all that read this. If you know nurses, tell them all that we're looking for home care nursing in the coming weeks. Let them know to send me all the names and phone numbers of any nurses that are interested. Send them to mike at thinwires dot com. Turns out there's a massive shortage of nurses and he can't leave the hospital without home nursing setup. This could be quite a struggle.

In other news... my office is very nearly completed in the garage. One more coat of touch up on the walls and paint the trim and we're all done! So many people have helped so much - but Vic, Andre and Chris really made this whole thing happen. Thanks so much to everyone that swung a hammer, painted a wall, wired an outlet, etc. I can't believe we're actually done with it all. It looks really great - and I know I can close out the world back there and focus on work, when it's time to.