NOT for the faint of heart (pics and description); plus a rant

This blog is coming with a warning label.  It contains pictures that are not suitable if you have a weak stomach and graphic nature of the content.  But for those who would like to know about and see his wound now, here goes. 

You can see in the one picture with my hand just how tiny he is.  And just how big this main owie is. 

The bad news is ... it's spreading still.  The area around the gtube is spreading but he also has new sites of owie.  The other side of his tummy is starting red blotches.  He has 2 strange blistery looking things on his ear. 

The GI was here recently and he said this is cellulitis AND his gtube is leaking AND there is some other kind of staph.  They sent out a culture to see what it is since it's now ooozing and not just red.  The GI also wants to run an ultrasound on this gtube site to see if there are any absesses in or near the area.  He said that if that is clear, he wants to give Manny's tummy one more day of rest and then he can start back on feeds tomorrow.  But if it looks bad, they might have to do surgery. 

As I type this, he is laying comfortably sleeping next to me on the couch.  He looks so pitiful with all these tubes in him - including one in his head.  That's the IV line where his fluids and meds are going in.  He also has the worst stinch coming from the gtube site now.  And his little gown is needing to be changed often due to the skin peeling and the oozing blood. 

And sadly, he has the little shaky vest (that he LOVES normally) twice a day to prevent him from getting pneumonia.  Well, it goes around his tummy ... you guessed it, right across his gtube site.  We normally protect it with a folded diaper or a foam insert.  Well last night, he was crying about half way through and that's not like him.  We stopped it early and when I removed the diaper, it was blood soaked.  OUCH!

The Pastorial Care Volunteer came by a little bit ago. She was inspired by his story and she was a nice lady.  But somehow, I am getting very "tired" of sharing my story like this.  I mean on here, I get to choose what to say, when to say it, think about it for a while, edit it and then send it out.  When people corner me here at the hospital or in real life, I feel obligated to answer their stupid questions.  And they don't realize ... THEY might be asking it for the first time, but it's the 100th time today that I had to answer it.  If it were something minor like why his arm is in a cast ... then whatever.  But these are questions that always end up with me having to say he was diagnosed with a terminal brain disease.  And quite frankly, I don't like saying it.  I don't like thinking about it.  I don't like talking about it.  I don't want to deal with it.

(EDIT:  But these are the docs and nurses who are caring for him and I feel like I have to tell them.  But it makes me wonder ... can't I just put it in the chart?  Do these people write anything down?  Strangers I have learned - for the most part - how not to over share.  But this environment is tricky.)

I would like to sit here in my hospital room without having person after person after person come in and ask for his story.  I had to tell it to the different doctors on Rounds.  The GI.  Each nurse with each shift.  Each PCT at each shift.  Each respiratory at shift change.  The social worker.  etc.  etc.  I'm seriously thinking about writing it down in a nice, succinct way and putting it on the door.  READ IT before you come in.  If it doesn't answer all your questions, then feel free to ask.  But I don't want to explain the whole thing every time.

And the whole emotional thing is just too much so I start to tell the story in rote form.  I'm disassociated from it as if I'm ordering off a menu.  I just rattle off the facts, the details and that's it.  I don't have the energy to slop through the emotions of how we felt when he got diagnosed, or whatever. 

So far, I've been very kind.  I'm just worried that one of these days, some poor unsuspecting person will walk in and ask a simple question and I'm gonna lose it on them!  (Hope not, but it's a posibility.  And if I do, I promise I'll blog about it! LOL) 

OK ... rant over.  Thanks.

Thursday Overnight update

Overnight update:  The most awesome news is ... he had NO breathing issues.  He didn't choke once.  He didn't do ANY retching.  So his oxygen levels stayed high all night.  That is a huge praise report.  (Just ask Dan how awesome that is ... he was up with me for much of it on Wednesday night and the sheer terror that was.) 

His g tube site looks much, much worse.  So if your stomach couldn't handle the picture I posted yesteray, then you would never make one I posted today.  (So I won't post it.)  But suffice to say, it' now missing most of it's skin and is outright oozing blood.  And it's bigger. 

He got IV antibiotics last night - every 6 hours.  But they don't know what it is yet.  They ran a lot of tests and just told me they will need to run some more. 

Meanwhile, he cannot eat until they figure this out so he's been "fasting" for 24 hours.  Yes, he's getting fluids so he's not dehydrated.  BUT, he's hungry.  And he's getting weak quickly.  Hoping they figure this out soon so he can eat again. 

Then he now has a raw spot on his ear - who knows where that is from.  AND he has a patch of skin missing where the tape was holding his canula on last night.  He must have paper skin. 

The last issue (For now) is that he is not producing much urine.  Not sure why.  This is new.  They are concerned. 

Thanks for the prayers.

Post by Dan

Beth was up most of the night as his breathing/oxygen levels would tank dangerously low and the alarm on the machine would go off. I was praying intensely from 3:30 am to 6:00, and then decided to get a little rest, as his breathing seemed to get better.

This morning he suddenly had a dangerous rash/infection (cellulitis) on his tummy around the feeding tube, though none should havbeen there. This worried the doctor. He is now to St. Joe's hospital again for careful observation.

We signed on for this, on purpose, when we took Manny into our home. It is not a huge surprise but it is very painful and trying to go through. We have been pouring love and prayers over him continually along with you and a couple hundred other folks around the country....and by faith have been reminding God of His word for healing and miracles. Eph. 3:20 comes to mind: "Now to him who is able to do immeasurably more than all we ASK or imagine, ACCORDING TO HIS POWER THAT IS AT WORK WITHIN US."

God is always good and always knows what is best. He is always very close & intimate to the situation and not a God who is afar off. God's love and mercy are the greatest things in the universe that we can lean of with our whole being...knowing that He loves us with the same love that He loves His son Jesus the Christ. He loves little Manny with a perfect love. I may not understand or agree with how God directs the situation, but I know by faith that He does everything with perfection and perfect love. He remains our only Hope and true security for eternal life. There is no other.

Please pray for Manny, Beth, myself and the kids. Thank you for holding up our arms during these times. We are still praying for a big miracle. God gets final decision, but we will continue to "bother Him" and "cry out to him" continually as did the widow who kept on bothering the judge for a favorable ruling and justice. (Luke 18:1-8)

Love you guys!!
Dan

I Hope

Today we were given 3 HUGE bags of clothes for the baby.  Kathie thanks!  It's full of beautiful clothes ... so many of them.  (Bad blogger didn't take pics though.) 

They are mostly size 2T.  Right now the baby is wearing 9months and 12 months.  So at this rate, he'll be in them next year. 

But of course as I was sorting and folding and putting them away I had this nagging thought ... would he ever get to wear them?  Would he be around next year to wear them?  If the doctors are right, there's ZERO chance that will happen. 

But of course I know they don't get to measure the length of his days. And it's the only hope I have. 

I'd love to say that I feel fully confident that he'll get to wear them.  But I'm not.  I only have HOPE.

It's amazing how something so simple can bring such deep, profound thoughts.  It's just a bag of clothes, right?  Not to me.  To me it's a bag of hope. 

I HOPE he'll get to wear the Elmo pants and the cute swim trunks and the Gators t-shirt.  I HOPE he'll wear the little coat next winter ... maybe even in Colorado visiting Aunt Shari and Uncle Pat. 

So in the meantime, I put them in a tub marked "Manny, age 2" and put them in a stack in the garage where I keep all the kids' clothes that are big.  And I hope that next Summer I'll be pulling them down to put on him. 

So thanks, Kathie, for the bag of hope.  And thanks to all of you for hoping along with us.

Busch Gardens fun

We live in Tampa so Busch Gardens is right here.  We've always had season passes and for some reason, we've let it slip the past couple of years.  Now that we're on Summer vacation, the kids were begging me to take them. 

So I did. 

Yes.  Me.  Alone.  With 6 kids. 

The trickiest part was the oxygen tank.  This thing is massive.  I bought one of those bags that you slip it in and you can affix it to a stroller or wheelchair.  Great! 

Problem is ... it weighs a lot more than he does so it's not balanced and the thing kept trying to fall over backwards all day.  It was the first time I'd used it so I didn't know until it was too late so we made the best of it.  But I need to rethink this for sure. 

Baby couldn't ride any rides of course but he loved the sights and sounds and just hangin' out. 

It was a great day!

Coughing again

Cough.  Gag.  Sputter. Choke.  Repeat.

Oxygen saturation levels in the low 80's (WITH oxygen on) during these episodes. 

And of course they all happen in the middle of the night.  That's been our past few days.  It's concerning because the doctor said that kids with leukodystrophy can have a slow, steady decline OR they can get one cold and not be able to recover.  So every cough makes my heart skip a beat.

Saturday night was quite rough.  Last night started out the same way so I posted a prayer request on F*cebook and immediately, he stopped choking and coughing and started sleeping.  He slept pretty peacefully from 11:30pm until almost 8:30 am with only a few little stirs and coughs.  Man do I love prayer warriors and a loving Father. 

Today we went to the Doc and were relieved to hear the crud is not developed into pneumonia.  It's all upper congestion only.  Whew!  That's awesome news. 

And honestly, everything that was done at the hospital for him, I can do for him.   They purposely sent me home with all the equipment to be able to do all this at home.  Breathing treatments, shaking vest, suction machine, oxygen, pulse oximeter.  Everything except IV meds and fluids.  The gave me all this to prevent having to go back to the hospital ... where he's more likely to pick up a secondary infection. 

I have to say I'm exhausted though. Sure I got some sleep last night, but I'm exhausted.  It's like I'm afraid to exhale. 

What does that mean?  I have a peace that passes understanding, which means peace beyond what I should have.  I really do.  But it doesn't mean that I feel peace 100% of the time.  I find myself (like when he's sick and choking) holding all the tension in my body.  I don't even realize it for a little while but then realize I have a horrible headache or tension neck ache.  It can be just 5 minutes of this before I feel it physically in my body. 

And the antidote is always the same.  Stop the worry.  Claim peace and a sound mind.  Rebuke fears.  And I'd love to say that works completely every time ... but the truth is ... it doesn't.    Maybe there are people who can sit and watch their kid choke, not able to breathe and feel no fear, only peace.  But I am not there yet. 

So that's why I'm so completely thankful for you.  All of you who are reading this, passing along Manny's prayer request, making comments, offering prayers and support.  YOU are helping hold up my very tired arms. 

I've never looked back and thought, "What have we done?"  I've never once regretted the decision to bring Manny into our home, our family, our lives, our hearts.  Never once have I considered any alternatives for his care.  He is my son.  And whether we get to love him for months or for a lifetime, loving Manny will always be one of the best decisions of our life. 

10 months ago ... (Not about Manny)

... 5 very excited children started school for the first time.  Up until this point we had only homeschooled.  This year, we decided to do something different.  There are a variety of reasons why.

We knew there would be challenges.

Jacob (Tall one on the far right) was supposed to get an IEP.  He was assigned a case manager and a special ed teacher prior to the school year starting.  He needs some modifications to his school work ... and with a few adjustments, he can do everything.  His challenges we knew would come from social adjustments.  And sure enough, we had some difficulties in that area - including some major bullying.  But we got that handled and the rest of the year went smoothly.  I CAN report, however, that as of today, he still has NO IEP.  (groan).  He'll be headed to 6th grade this next year.  He is very proud of the friends he made.

Kaley - in the pink shirt.  Finished 4th grade with the most amazing teacher EVAH!  We knew there would be some challenging academic subjects ... and they were.  But she has "intelligences" that don't show up in academic arenas.  This little girl has some amazing gifts and she is going to be doing great in life - whatever she chooses to do!  She says when she grows up, she wants to do "Nothing ... just like Mama"! LOL  We figured her challenges would be in the area of health.  And while she DID miss quite a few school days due to her special need, we were thrilled at how many days she was actually able to make.  She's headed to 5th grade.

Sam - in the middle, just finished 2nd grade.  He pretty much held his own this year.  He loved going to school.  He easily made friends.  He was popular with students and teachers.  His teacher even made the comment about how Sam could light up his day with his smile.  He was rarely in trouble (even very few warnings) and loved every minute of school.  He's a math whiz.  He's headed to 3rd grade.

Luke - in the blue shirt was our 1st grader.  He has some challenges emotionally and physically but did a lot better than we thought he would do as well.  We knew academically he would do great but it's the other areas that can swallow him up sometimes.  I gave his teacher one of his secret motivations ... CANDY ... and kept her well stocked.  And sure enough, he worked hard for her.  He couldn't read at all at the beginning of the school year and now he is a reader!  Still doesn't like it but can do it.  And he's a math whiz too!  Headed to second grade.

Zoe - far left finished preK and is headed to Kindergarten.  We put her in mostly for speech.  While we can understand everything she says, most people cannot.  We thought it would be beneficial to her to have to work a little harder to be understood.  But ... it didn't work out that way.  Her first school actually REWARDED her for not talking all day!  Seriously.  So she got a new school.  Wished we would have found the second school sooner as they were great with her.  Teachers were kind and gentle and worked with her special need.  She didn't learn much academically during the first school either so she is a bit behind headed into Kindergarten... but we'll catch her up during the summer.

So all in all, we survived the school year.  I would give this experiment a B-

Most Moms I hear are dreading having the kids home for the summer.  I am actually looking forward to it!  And I know Manny is thrilled to have them here.  They play with him in a way that is way more fun than I can do and while they do that, I can get some housework done.  (Who am I kidding?  I use the time to write blogs!)