Feb 3, 2012

Which floor?

Thursday:  Manny went to the Pediatric Metabolic Geneticist. This meeting was to help discuss next course of treatment/testing. 

I presented the info to her this way:  Bottom line is ... either the literature is wrong and Merosin DOES affect Smooth Muscles or Manny has a SECOND very rare disease.  After a long discussion, we decided the best thing would be to contact the NIH (where we are supposed to go next week) and collaborate with them. 

There are some tests she wants done on the actual muscle that was biopsied.  It's the best hope of finding the issue.  The hope is to get to the bottom of it so Manny can eat again.  Plain and simple. 

I was very excited about this visit and the outcome. 

Thursday night:  The kids had a PTA fundraiser at Chuck E. Cheese.  Because it's Manny's favorite place, I took them, even though Manny wasn't 100%.  His arm is the only problem and we have it thoroughly covered so I figured why not? 


Friday:  Manny had an appointment with the cardiologist.  The doctor was able to hear a new murmur.  He thinks it's an "innocent" murmur but wanted to be sure so he strapped a 24 hour holter monitor on him. 

While we were on the hospital campus anyway, I decided to look up the IV person, Stephanie.  She is the one who helped put this thing in last Friday night.  We talked for a while and then called Dr. Cartaya "Doc" to come help decide what to do (since this was HIS idea). I talked with him privately for a bit ... told him my concerns about not being able to keep the site sterile because the skin was still weeping and causing the bandages to peel up.  We bounced some ideas. 

Stephanie also called the Wound Nurse who had great ideas.  After a long discussion, we came up with a plan of action on how to care for the wound.  (The one I'd been seeing every day for the past week.)  Doc left. 

Got into the room.  Pulled off the dressing.  And I was in SHOCK at what we saw.  This was no longer skin being irritated or red or raised bumps.  The whole thing was PURPLE and smelled.  There was infection.  There was DEEP tissue cellulitis.  It is BAD.  This picture doesn't even begin to do this justice!
The skin is weeping. The purple is deep, deep cellulitis. There's an on smell on the skin. There's a red rash beyond the borders of the bandages. There is lymph node involvement under the armpit. The arm is more swollen today than day 1


The nurses were shocked too.  Stephanie immediately called Doc to come look at it.  He walked in and eyes got big.  He basically asked which floor I'd like to be admitted to.  This thing HAD to come out NOW! 

Now you realize, I'd come for a 2 hour doctor appointment.  I had nothing with me.  NO cell charger, no laptop, no clothes, nothing.  (Not to worry, I had a bag packed still at home ... sadly, I had a feeling that it was wise to keep it packed.) 

I text Dan, "Being Admitted".  He replied, "Long or short".  (I think that conversation says it all... we got to the heart of the matter... no emotional outburst, just business.  Sad.) 

Stephanie gets an IV in.  Draws blood.  Takes out the PICC line.  Attends to the arm.  All this is done and we are not even admitted.  We are not in the system at all.  This was sooo not the way it was supposed to go.  We are very "off script".   They can't even send the blood yet because there are no labels, etc for it. 

Cartaya goes and writes up the orders.  I carry the drawn blood with me.  I get registered.  We are admitted.  Back to the same floor we just left, less than a week ago. 

Dan gathers up my stuff and brings us dinner.  Kids are all too comfortable with this environment too. 

Tonight, he's all comfy in his big bed.  No crib was available so they put him in a regular bed.  He looks so tiny in it!  But there's room for us to snuggle, which is nice too.

 

Me?  I know you're all wondering.  I am on pause again.  Truthfully, I wouldn't be shocked to hear that he has a blood infection/sepsis.  I am not hoping for that, just a gut feeling.  And I am praying that my gut is wrong this time.  (It rarely is!)  So I am praying that God just heal him and heal his blood. 

The plan?  Wait for the blood cultures NOT to grow again.  IF they don't, we will try to put in a Broviac on Monday.  If that goes well, we could even go home as early as Monday evening.  That is a good plan.  I like that plan. 

If it does grow something, we're here for the long haul again.  We hope and pray that this isn't ahead of us this time.  I do not like this plan. 

So ... if we get Plan A, I'm good.  I'm fine.  I'm just a bit numb. 
If we get Plan B, I think I will need some kind of psychiatric intervention.  (Mostly kidding, I think.) 

So for now, I hunker down.  We go back to living one day at a time.

If anybody is still reading and along for this VERY bumpy ride, Thanks!  We're still in need of all the support we can get.  This story needs to be told high and low.  Apparently, God wants to get a lot of Bang out of Manny's story and He wants many people to know about His goodness. 

Blessings!

9 comments:

  1. Beth, I will ALWAYS still be reading! Many prayers for you and manny and family daily in the Sisemore household!!! When you post I just know how more specifically to pray! Hang on my amazing friend! I know you shine a light at that hospital and through your blog and facebook! I wish I could do more than send a cyber hug but for now it will have to do!
    love and hugs,
    Tami

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  2. Becky Browder NeustadtFebruary 3, 2012 at 10:33 PM

    Oh I am reading - all the way. And I am praying. I like Plan A too. Plan A it is. Hoping Manny has a Chuckie Cheese dream tonight -- and I am hoping Mama dreams of being home by the first of next week. xoxoxoo

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  3. Oh, Bethie. Of *course*, I am still reading. Of course, I am still along for the bumpy ride. I hope you know that. I hope it goes without saying. But, just in case ... I'm sayin'. And stayin'. I love you, sister-in-Christ.

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  4. Hi Beth,
    I read blogs and rarely comment. I have been following your family for awhile. I think I came to your blog intermittently through Zoe as I am from the China adoption groups. Since Manny I have you on google reader which means I read it all but also I am never on the actual blog so even less likely to comment. Manny seems to me to be the most endearing little boy. I am not sure what to say to you as it seems like what you probably need most, other than good health news about your children and yourself of course, is just a hug. To be able to say that this all is horrible and awful and unfair. I am not someone who shares your faith but I hope that it offers you comfort through this. I do believe that there are different ways of understanding the world and the things that happen, to try and find peace in the small moments (love the photo of Kaley in bed with Manny) and get through the hard ones. I am a psychiatrist and my work focuses on people coping with medical illness. It is tough and the strongest people who cope over and over sometimes just need to be "crazy" for a bit, whatever that looks like to them. Find the ways you can stay as healthy as possible. Find a stretching routine you can do in the room, some jumping jacks maybe, ways to stay active. Let Manny count for you while you do them, be silly. Let people close to you know that sometimes you may need to just not "be strong: for an hour or so, whatever you need. Look, I do not know if this is at all helpful to you or concordant with your beliefs. If it is not please view my suggestion as made with respect and good intent. There is a book written by a Rabbi, Harold Kushner called "When Bad Things Happen to Good People." He wrote it in the context of the terminal illness of his son. Although written by a rabbi it is in the Judeo-Christian Tradition and I know that people of several faiths have found it helpful. I am hoping, wishing, whatever it is I do that Manny is clear and home on Monday. And so glad he got to go to Chuckie Cheese. Seize the moments.

    Ellen

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  5. Still reading, and still praying. ((HUGS))

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  6. Oh Berth we are praying and sending you lots of higs tonight. Give the little man a hig from us.

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  7. So sorry you are back there again. Praying for all of you. Sending hugs to both you and Manny.

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  8. Still reading your posts! Makes me cry! Yet, I know the Lord is with you and Manny! Everything is in His Hands! Still praying!

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  9. I just can't believe all Manny has to go through. And of course Mom and the entire family too. Praying for you all and wishing I lived near you. I would love to be able to help your family while you are in the hospital with Manny!

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