The Supreme-est Court

I don't know how it REALLY is, but this is what it seems like to me regarding Manny.   I know this will challenge some of your thinking, conflict with some of your religious beliefs and may even offend some... not my intent.

Think about a court of law.  A "Death sentence" was passed on Manny.  I don't know who the Judge was or what the evidence was, etc. that made him render that decision.  But that was the verdict.  And it was given to him prior to birth. 

In our country, we have a court of appeals ... all the way up to the Supreme Court.  It's a way of taking a verdict that is not satisfactory under the law and appealing the verdict.  We had to do that for a family member years ago.  A judge issued a very bad, very illegal verdict and we appealed to the next court level and had it overturned. 

All the evidence up to this point has been stacking up on the side of "Death sentence".  Every doctor has washed their hands of trying to help Manny in any way other than making him feel comfortable.  They see it as a foregone conclusion that he will die and the only question is if it's 1 month or 6.  There are no cases in which children with this diagnosis have lived.  None.  Zero.  It's fatal 100% of the time. 

For Manny, we have been entering new evidence.  We have asked others to put in their appeal on his behalf.  And we're making our closing argument.  But this time, it's before the Righteous Judge.  The Supreme-est Court in the Universe.  We're admitting into evidence the fact that Jehovah Raffa is his healer.  We're claiming that the stripes of Jesus Christ paid for Manny's condition too.

Somehow it brings me comfort to know that the decision isn't in the hands of Doctors.  It's not in Dan's hands or My hands.  It's not up to me saying the right prayer or making sure I do the right things.  It's not about me begging a certain number of hours or fasting a certain amount of days.  It's NOT UP TO ME.

I know that this Judge is considering all the sides.  I know that if He leaves Manny with us ... that will be an amazing gift.  And if He chooses to take him ... well, that thought is just unbearable.

So right now, it feels like that moment where in a courtroom where the Judge is out of the room deliberating.  We are waiting for the verdict.  And our only hope is in knowing this Supreme Court Judge is loving and fair and merciful and righteous.  He loves Manny more than we do.  And the verdict is in HIS hands alone.

Soon God will render His verdict. 

We all pray it's "Life". 

Tight Rope Walker

I know if I were you, I'd be wondering what was going on in my head right now.  While I won't share it all (you might call the looney bin on me), I can tell you some of my thoughts and feelings.

I feel like I'm walking a tight rope and if I tip to one side or the other, tragedy will happen.  I know it's not true.  I know that I, Manny and my family are safe in the palm of God's capable, loving hands.  But it FEELS like it.  I don't feel like I have to be perfect or "get it right" but I do feel like there are some choices that have worse outcomes than others, some that leave bigger scars. 

During the day, I try my best to keep it together.  I go about my daily life like all is fine.  And then I run into these IDIOTS (I don't use that term lightly) who have no clue and say hurtful things.  I Know they don't mean to hurt but they do.  Like yesterday, I was in the doctor's office with Manny.  He was asleep so he was on oxygen.  I sat quietly minding my own business as to not have questions.  When she asked how old, I simply said 11 months and went back to thumbing through  magazine.  I knew it would not end there. I knew she would push the conversation until SHE felt uncomfortable and I was trying desperately to avoid HER feeling stupid. 

One question led to another and each time, I answered matter of factly.  She even felt the need to tell me we had the wrong type of oxygen tank.  That a baby this small should have the small type.  I told her it was about how much oxygen was needed and he needed the full size tank.   I'm feeling judged by this stranger on what type of oxygen we use!  Ugh

All the while, I knew what she really wanted to ask was why he was on oxygen.  I could feel my patience for her waining.  I even got up to walk away so she would get the hint that the conversation was OVER ... but she pushed it.  "He have asthma?"  no.  "He have cystic fibrosis?"  no.  "Why DOES he need oxygen?"  And as I said it, I knew she would feel like a complete a$$ but she wouldn't let it drop so I told her.  "He was just diagnosed with a terminal brain disease.  Kids with this die of respiratory failure.  So he needs oxygen." 

I could hear the breath leave her body.  She sat rigid in her seat and barely took another breath.  We sat in silence for another 5 minutes or so until her child was called to be seen.  I'm sure she was relieved by that.

And of course I felt bad for her.  (I know most of you will say I shouldn't have ... but the truth is ... I did.) I don't know how to stop the conversation yet.  But I'll learn.  "It's none of your business" doesn't seem quite right but it's actually the truth.   See?  I fell off the tight rope yesterday. 

A long time ago in America, people would wear black arm bands to signify a morning/grieving period.  It gave people the heads up to be extra careful with this person during this time.  I kinda wish we still had that.  I would wear one.  Then again, this kind of woman would have asked, "Why you wearing the arm band?"   So I probably couldn't win. 

But as I dusted myself off and got back on the tight rope I learned something.  It's going to happen.  I AM going to fall off.  I WILL get some of this journey "wrong" or wish I had a "redo".  But I also know I'll get a lot right.  And I don't want to miss one step of this journey. 

Yesterday he had a very, very bad day.  He was having a lot of symptoms and it was very scary.  But today, he is a little more back to himself.  He was laughing and smiling at me.  And it makes every part of this journey on my tight rope worth it.

New Friends

Thanks to a college friend, Manny received new "Friends" today.  He loved them!  He even took his nap with Elmo today.  Thanks George! 

We went to the Doc today.  She said his lungs sounded GREAT!  We also discussed how to proceed with physical therapy for him (enough to help but not frustrate him), getting some more equipment to make him more comfortable, setting up the swallow test to see if he is losing any more skills (which increases the risk of aspiration), and even arranging to get us a handicap sticker. 

A quick story about the handicap sticker ... I have a 15 passenger van.  It doesn't always fit in regular parking spots so I usually park waaaay out in the back 40 so it doesn't get in any one's way.  And also, it lessens the chance that someone will pull beside it.  If someone DOES pull beside it, I cannot open the door enough to get his car seat in/out.  And if someone pulls too close to the back, I cannot get his stroller in/out.  (And this happens all the time ... very frustrating.)  So today, the ONLY parking spot that would fit the van at the doctor's office was one in the next parking lot over.  I loaded him and his stuff into the stroller.  He was asleep so he was hooked to oxygen.  I'm pulling the oxygen with one hand and pushing the stoller with the other.  I'm dragging all this through the dirt, the grass to get to the office.  I was exhausted by the time I got there (not to mention the contortions I had to do to get the door open).  So I thought to ask the doc, "At what point do you think he qualifies for a handicap sticker?"  and she said, "TODAY!"  So I will fill it out tomorrow and go from there.  Hopefully no more incidents like this any more.  (It's the little things!)

Regarding the GI doc ... he wanted Manny's tube to be changed to a different type of tube a few weeks ago but he got sick.  I called today to get the appointment set for the surgery and now there's trouble with the adoption issue.  They have some weird policy (that the other docs don't have) and are making us go before the Judge to get a thing signed.  I was so upset that I called the social worker to see if she would call the doc office directly.  It's absurd what they're asking so ... hopefully she can straighten it all out.  In the meantime, his tube is broken and we're having to make due with what we have.  Trying to hang on until the surgery ... lest it become and emergency operation. 

Many of you have asked about how Manny is doing.  Quite honestly, we're seeing decline in his skills, his alertness, etc.  Doc said I might need to increase his oxygen levels ... to include awake times.  My heart is heavy every time I see him struggle for a breath. 

We're still very much praying for the miracle of complete healing.  At this point, we haven't seen it yet.  So we are holding on to hope.  We're getting strength from all of you and knowing you're all praying too.  We can feel it.  Thanks!

We are so very thankful to all our friends!

11 months old

Manny is 11 months old today.  We got him exactly 2 months ago today - March 26.  It's one of those time warp things where it seems like just yesterday but at the same time, seems like he's always been a part of us. 

We're slowly getting used to the whole new routine of all the medicines and machines.  Like you should have seen me at Goodwill today.  Had to get Jacob some swim trunks for a field trip tomorrow and I had all 6 kids with me.  Manny was sleeping and I had his GIANT oxygen tank in the back of the cart.  It seemed "normal" enough to me... except when I'd catch people staring at us! 

We head tomorrow back to his Pediatrician.  (Love her.)  And I have tons of questions I'm hoping she can answer.  Theoretically I should be there with no other kids so I should be able to ask them all.  I say "theoretically" since there's been at least one kid sick and out of school for the past 2 weeks.  I think all will be back tomorrow though.  (They had the same flu that landed Manny in the hospital and they took turns having it for 3 days each.) 

These pictures are of him getting his nebulizer treatments.  I laid it down on him so I could get the picture.  (Not a trach.)

On a non-Manny note.  Zoe turned 5 yesterday and she wanted to get her ears pierced. So off we went to the mall to do it today.  She wanted to be like Mama and big sister so she was highly motivated.  She's been bugging me about 6 months about it and I told her when she turned 5. 

I think about the pain this little girl has already been through and a few little needles in her ears are nothin'!  She didn't even flinch! Not a tear. Not a whimper. Such a brave little girl.

I am so proud to be your Mama sweet Zoe!

Zoe is 5 ... a walk down memory lane

Zoe Zi Yvonne Gore.  Born Dang Gui Zi on approximately May 25, 2005 near Taiyuan, Shanxi China.  She was found about a week later ... in a place that it's a miracle they found her.

China Care (Specifically Hannah) found her at the orphanage and took her to live in their medical group home.  She received cleft lip surgery.

She got a foster mother.

Then she got a forever mama.  We missed that 2nd birthday by 3 weeks. At the time, we were very sad.  But it turns out, she got celebrated that day!  It was the last day her foster family had her.  And they truly love her.

Since then, she has grown into quite a beautiful little lady.  She also is very smart and very funny and very talented.  She also has some deep hurts and wounds that show themselves every now and then usually in the form of anger.  We pray God will heal her heart.

Here are some random videos of her so you can get to know her better:



age 1 before we got her http://www.youtube.com/watch?v=mksxAfswaao
age 2 making faces:  http://www.youtube.com/watch?v=QrEcj6R2vA4
age 2 blowing bubbles:  http://www.youtube.com/watch?v=PShVCZQYkOs
age 2 singing "Happy birfday to youp"  http://www.youtube.com/watch?v=ZKFg1E5iLEI

And finally, her story in song called "One Day" a song I wrote for her just before I met her.  http://www.youtube.com/watch?v=eJZEfCDTz1o

I am incredibly blessed to be her Mama.

Pain

Often, I am being asked, "Is the baby in any pain?"  I get asked that by concerned friends, but also by medical professionals.  And the quick version is ... not that I know of. 

Manny is a "Learn to be content in whatever state" kind of kid.  He rolls with the punches.  He endured a LOT of pain in the hospital and he was able to let it go easily. 

But the truth is ... I don't really know if he's in pain. 

And every now and then ... like last night ... he cries and I can't figure out what is the problem.  And that causes ME a lot of pain.  It breaks my heart to know he's suffering and I can't do a stinkin' thing about it.  I pray and sometimes I get a word of knowledge about something to do for him.  But other times, all I can do is ask God to take away the suffering. 

And in those moments, I contemplate the sufferings of Christ.  Not that I am partaking in the sufferings of Christ but I consider all the suffering He did.  We often think about the suffering of His death.  (Which is beyond thinkable.)  Or the sufferings He endured while on Earth.  But I also know He suffered a lot prior to His human existance and He continues to suffer with us.  Don't know if you've ever considered that. 

In these moments, I also think about Pain in general.  Humans are designed to avoid pain and head towards pleasure.  We're wired that way.  And most of us will do almost anything to avoid pain.  It's why people go to numbing agents like drugs or alcohol or pornography.  It's why people bury themselves in hours of TV.  We're trying to avoid pain. 

But we are supposed to look around and see the suffering around us.  We are supposed to DO something about it. Matthew 25 says we're to go ease the suffering of others and if we don't ... It's like He never even knew us.  I believe we can't truly call ourselves Christian and not notice and help remedy the pain in other people's lives.  If we don't, then we aren't Christ like. 

The other day (not bragging here, just making a point).  I was in Walmart.  We were out of everything and I'd just gotten home from the hospital.  It was crazy busy there and I noticed a woman in a wheelchair.  People were in their own little worlds busily going ... and were cutting her off.  I walked over to her and asked if she needed some help getting somewhere and she burst into tears about how she had just had back surgery, people weren't noticing her and the tears just flowed.  I left my cart and cleared the aisle from the back of the store to the front.  I put my hand (lightly) on her back and prayed God healed her.  I pronounced blessings on her and sent her away with the message that someone noticed her. 

The whole thing took 5 minutes and as I went back to my shopping, I started to weep and thanked God that he had changed my heart somewhere along the way.  I was never a super selfish person nor a cold hearted one ... but now He has given me the heart to notice suffering.  I notice pain. 

And so I come full circle in the discussion.  The point isn't to AVOID pain. The point is to go TO the pain of others and be a blessing, to help relieve some of the suffering. 

What about YOU?  Start noticing suffering and pain around you.  Let it change your heart.  Find out what God wants you to do about it.  And do it. 

Let Life Resume

When we were in the hospital ... life came to a complete halt.  For a week, I was indoctrinated with death, dying, demise and disease.  I was told how the illness takes it's normal course, what kids with Leukodystrophy die of and what the warning signs are.  We discussed end of life matters, hospice and home health nurses.  We devised a plan of how to proceed. 

During this whole thing, I was wresting with how to incorporate faith in all this. Afterall, I have a BIG God.  A God who is a God of life, not death.  He wants people healed.  He loves Manny more than I do.  He doesn't want him to suffer.  And I was wondering how to do the balancing act.  I felt I was on a tightrope. 

During one of my times of praying about this, God sent Dianne into my room.  I told her this very struggle and she offered some advice.  She said to make the plans.  Have them all ready.  And then get on with life.  I felt  peace come over me.  I said, "I can do that!" 

So like I said before, when I drove away from the hospital, I had the plan in place.  And I drove towards life. 

Life had been on pause. 

Now I find myself hoping again.  I feel myself talking about "When he grows up" and "After he can walk" and "When he can eat".  We're making plans of life.  We're making plans of the future. 

I know that the friends in my life might be wondering what to say to us or how to talk or topics to avoid.  But for now, we're good.  We've got our lives back and we're celebrating each and every day.  We were on pause for a while but now we're back to fast forward ahead. 

If you find YOUR life is on pause, I suggest to you ... live life to the fullest.  Make each and every day count.  Celebrate every day.   Love much and laugh often. 

LIVE.

Questions and Answers

Some random questions I've been asked:

1) What is the actual name of the condition?  Leukodystrophy.  Leuko means "white" and dystrophy means "not working right".  Specifically, they suspect it's Canavan's Disease.  (They did a genetic blood test to see if it is that one or a different one.) 

2) What is the prognosis the doctors have told you?  Children with Canavan's can live up to their teens.  But the sooner they show symptoms, the worse the prognosis.  Manny had symptoms at birth.  In addition, the MRI at birth showed a completely normal brain.  At 8 months, the CT showed it was only in the posterior of the brain.  And at 10 months the MRI showed the whole white matter of the brain completely diseased.  Therefore they are calling it "End stage".  The fact that the EEG showed no seizure activity is a good sign.

3)  What do children with Canavan's die of?  Children with Canavan's die of respiratory failure.  The Pulmologist said there are 2 ways this typically goes. They take a steady decline.  OR they are declining and then one day get an illness and they can't recover from it. 

4)  Where are you mentally?  I did all the hard work of facing the diagnosis, the prognosis, getting THEIR opinions on the situation.  I made the plans ... for hospice, home health nursing, DNR, etc.  Then when I drove away from the hospital ... I left it ALL there.  We are now headed into life.  God sent a wise woman in my room at the precise moment I needed it.  She told me to make all the plans and put them to the side and the get on with living.  So that is what we are doing.

5)  What now?  We are home and trying to figure out how to do daily life things.  Soooo much has changed.  From small, subtle changes to huge differences.  My brain is working towards a new plan of how to do everything.  My biggest concern is how to keep the baby safe.  I don't want him to live in a proverbial bubble.  I don't think that's any kind of life.  I don't want the kids to be like, "Oh I remember Manny .. he was the kid locked in mom's room that we never saw."  But I also know that there are germs everywhere and one infection could be devasting for him.  So I don't have this balance figured out yet. 

6) Where are we spiritually?  We are spending a lot of time praying, claiming scriptures, binding/loosing, laying hands on, etc.  We're leaving no stone unturned spiritually.  We're asking for every prayer warrior we know to pray for this .. to take Manny's name before the Righteous Judge.  God is showing us He wants to be made FAMOUS.   Every morning and night I have a long routine of medicines and treatments that I am supposed to do for him.  While I do this, Dan reads healing scriptures over him.  I do the physical medicine and Dan dispenses the spiritual meds of the Word. 

7)  Comments and Emails ... we are getting many comments and emails.  While we cannot possibly answer each one please know that we read each and every one.  They are all giving us peace beyond understanding.  We can truly tell we are being prayed for and lifted high before the Almighty.  We are very very thankful for all of you in our lives.  We are truly blessed. 

The homecoming

(One last picture from the hospital ... I love the expression on his face ... one of shock! LOL)

We are thrilled to be home ... but the reality is ... it's not easy.  I know we'll adjust to the new "norm" in no time but yesterday was a challenge.

Got home about 1pm.  Three of the kids were home sick from school so Dan was working from home.  He's done an amazing job of taking care of them (along with my mom) so no negative reflection on him ... but there were a lot of things I had to do to catch up on when we got home.  I'm not an obsessive compulsive cleaner or neat freak ... but I nurses were coming to my home and I didn't want them calling in a neglect report based on the dirty house! LOL :)

The 3 sickies wanted to be held and kissed.  Afterall, I haven't seen them in a week.  But they were sick and I was afraid to get their germs lest I pass it on to Manny and we end up back in the hospital.  And I'd been at the hospital and didn't want to pass anything along to them.  So it was sad I could just smile at them.  (Until we all showered and then I did some major lovin'.)

2 nurses showed up.  One to deliver his overnight oxygen concentrator.  The other is home health nurse.  The  hospital wanted us to be an established client in case we will need help down the line.  For now, they're like an "ask a nurse" but on a child they have seen and have all the medical records for.  I can call them if I need to get hold of a medical professional ASAP. 

Then I got to cleaning our bedroom.  Manny sleeps in our room in his crib/cradle.  The docs all suggested his room be as sterile as possible, a sanctuary of sorts.  I couldn't do that yet.  But I could at least change the sheets, sweep the floor and establish it a "no kid and no cat" room.  I think I might have to hire a cleaning person ... don't really have the money for it.  But since I can't use the chemicals to deep clean ... might have to do it. 

Our dear friend Ann showed up with dinner and an ear.  I also took that opportunity to quickly take a shower and get a good hair washing!  Amazing how renewed you can feel once you are truly clean. 

By the time we got all the kids to bed, equipment set up and baby all set (with meds, oxygen, feedings, nebulizer, etc.) it was 11pm!  We had a few glitches and finally got them resolved.

We all slept soundly.  Baby slept until 10am. 

My brain is full of questions.  Mostly about how to do daily life. 

Everything has changed.  Everything.  The simplest things.  I know I'll eventually get my head around the "new normal" but for now ... I'm overwhelmed.  I'm not longer overwhelmed by the diagnosis or prognosis.  (More about that another time.)  But just about how to go from here.  

So until I figure that out ... one step at a time.  One breath at a time. 

We are Outta Here!

Last Friday we went to the Doctor thinking she would give us meds and instead we landed in the hospital.  But it's been a very good thing in a lot of ways. 

They were able to tell Manny needed oxygen EVERY time he sleeps (even cat naps) ... that would have taken us forever and probably a sleep study.  This would have continued his heart compensating and could have damaged his heart.  Instead, they were able to do a verified need for oxygen and a pulse ox machine at home. 

They were able to find the news of the past genetic tests we've been trying to get for 6 weeks. 

They were able to do an MRI and give the diagnosis as well as a blood test to (eventually) determine the subtype. 

They were able to do an EEG and see he is having no seizures. 

All of these tests would have taken FOREVER as an outpatient and instead, we moved right to the front of the line.

Because we were in the hospital on the Respiratory floor, they had THE docs and nurses and respiratory therapists who deal with chronic kids.  We were able to get the specialists who have seen this condition before and know how to proceed. 

While here, we had an amazing Doctor who fought for us.  He went to bat for us with numerous people.  We're told he's funny ... but we've only experienced him being direct and honest (which I LOVE).  We've heard he YELLED and SCREAMED at the nurses (two times).  You can tell and Manny wormed his way into this Doctor's heart. 

We also had many wonderful nurses.  (Along with some who didn't "get it".)  But one that stands out is Dana.  She was there when the diagnosis was being delivered.  She was there through the next two days as I was inundated with a plethora of people.  She was kind to me as I found my footing again.  And she LOVES my kid! (Thanks Nurse Dana ... we won't forget you.)  

Thanks to everyone at St. Joseph Hospital for taking such good care of us. 

A week ago

A week ago I had a little boy sick with the flu
A week ago I wrote a FB status that said he might end up in the hospital
A week ago I was shocked they admitted him
A week ago I first heard a doctor ask if he went down quickly did I want him intubated
A week ago a doctor went to bat for us to find out news of genetic testing
A week ago we discovered he does not have SMA
A week ago I had never heard of an "infused" arm
A week ago I had never heard (or loathed) the "cough assist"
A week ago I had never seen my baby "dance" and "sing" with the vest
A week ago I had a child with hypotonia of unknown cause
A week ago I had never heard of Canavan's disease
A week ago I had never been told my child may not live to his 1st birthday next month
A week ago my child didn't have a pulmonologist or neurologist
A week ago I had never met these amazing doctors, nurses or therapists
A week ago I had a child who was having appointments set for therapeutic care
A week ago I had never considered palliative care
A week ago I had never considered a DNR
A week ago I had never signed a DNR
A week ago I had never argued with (multiple) nurses over oxygen
A week ago I didn't know how to put a child on an oxygen tank
A week ago we had hope that the condition he had was minor
A week ago I had never talked to hospice nurses
A week ago a chaplain had never given me her opinion on prolonging life versus prolonging death
A week ago Chrissie was still alive

A lot can happen in a week

Joe Turtle and 2 miracles

My friend Ellen (who traveled with us to China to get her daughter from the same orphanage as Zoe back in 2007) sent Manny a "welcome to the family" present.  It arrived while I was in the hospital and she told me it was something we might want while IN the hospital. 

We opened it yesterday and it is one of the coolest toys EVAH!  It's a turtle that lights stars on the ceiling.  Oh my does Manny love it.  (We've named the turtle "Joe" since we got it while in St. Joseph's hospital.)  Well last night, we couldn't wait for it to be dark enough to see it.  It's light enough to place it on his tummy and he can wiggle just enough to make the stars "dance".  I wasn't able to capture the lights at night on the wall due to my camera but suffice it to say that it's amazing and it lights up the walls too.  (Comes in green, blue or red lights.)

So thanks to Ellen, Manny slept under the stars last night. 

I would be remiss if I didn't tell you about a couple of miracles that have already happened during our hospital stay.
Miracle 1:  Remember how I told you Manny's arm infused?  (The IV fluids are supposed to go in the vein, not into the surrounding tissue.  His IV came out and that's what happened.)  When this happened, he was sitting with me.  The nurse had come in earlier and felt it and it was fine.  Then all of the sudden, it was HORRIBLE.  I was scared.  The nurse was scared.  The news spread all through the floor quickly. 

But the miracle was ... it was only fluids.  (Basically water).  He was SCHEDULED to be on a medicine at that time but we had gotten behind due to a procedure.  I was told that if this happened when the meds were in his IV, he could have lost his arm or worse.  So even though this was horrible, I have discovered how much worse it could have been.  And since it was just fluids, it was reabsorbed by the body. 

Miracle 2:  Remember how I told you Manny was on "cough assist"?  Well if you ask me, it's a primeval torture device!  He does NOT do well on this machine. It's designed to produce a cough so he can cough some of the gunk up.  But ... in all the time he's done it ... never one cough.  Not one.  Two nights ago, we had a respiratory therapist named Dean who had been a paramedic and then has done this for 34 years.  He looked at the order for the cough assist and when it was time to do it, he came in (at midnight) and told me he didnt feel comfortable with what was in the chart.  He said he felt the pressure was too high for such a small baby.  That was the pressure that they use on teenagers (130+ pound) and not on a 16 pound baby.  So he told me he would suspend them and consult with the doctor in the morning.  aaaahhhh. 

The next morning, Mary Kay (our next respiratory therapist) said she too didn't feel comfortable with the level of pressure and it was up to ME if we did it or not.  She consulted me (mom to mom) and said that I have the right to refuse any treatment.  So she and I concocted a way to put that in the chart without questioning the doctor. 

Here's the miracle part ... little did I know last night I would get this respiratory therapist named Marion.  She is a sweetheart but ...  Let's put it this way.  When I heard I was going to have the "vest" at home, I read the instruction manual one time.  Then she came.  She was trying to run the 'vest' and didn't even know how to turn it on, adjust the settings, set the timer, etc.  This is something I learned in 5 minutes!  Yikes.  Now the vest isn't going to hurt him if she screws it up, it just won't come on.  But the cough assist could actually damage his lungs.  And here I have this inexperienced RT?!?  I wouldn't have been awake when she did the cough assist and because of a conversation earlier in the day ... it didn't happen! 

God truly takes care of ALL the details.

Hectic day

I'm very late in posting today because it's been non stop with people all day.  Not fun people like visitors but yucky stuff and things I don't want to be talking about.

The pulmonologist made sure Manny was sent home with a suction machine (because he cannot swallow his saliva and they don't want it to go down his lungs), a pulse oximeter (measures the amount of oxygen in the blood ... I've been talking about that one a lot), the "vest" (which shakes the congestion loose) and oxygen. 

Next person in was the Neurologist with some really (relatively) good news.  He sees NO seizure activity!  He explained that the white matter of the brain is all diseased but if there are seizures, it shows just how far it has spread.  So it's a good sign that he isn't having seizures.  I took it as a great sign that he set an appointment with Manny in 2 months from now.  That tells me he thinks Manny will still be around in 2 months.  I cling to all the good news I can.

The pulmonologist said that kids with Leukodystrophy tend to die in 1 of 2 ways.  A slow, steady decline over time.  Or, they're on a slow decline and then get an infection and are not able to recover.  So we're going to have to figure out a way to keep him healthy (with 5 germy kids around) without having him live in a bubble (that's no way to live).  Still trying to grasp how to do that.

Mom stopped by.  That was great to see her.  Haven't talked to her since the diagnosis.  She's great because she knows ME and what I need.  She loves her grandson.  And she has a PhD in Clinical Psychology and has for the past few years, specialized in death/grief counseling.  So she will come in handy.  She is still fighting for the miracle like the rest of us!!

Then the social worker was back talking about a program that is a new program.  It's a step before hospice.  And they provide services for the entire family, not just Manny.  My first thoughts are of him right now ... I don't want him to suffer.  I know of a kid (most of us do) that at the end of her life suffered a lot.  I cannot imagine how her mother must have felt watching that, standing by so helpless.  And I have the choice to be able to let Manny just "go to sleep" peacefully.  (IF that is God's plan.)  And that sits better with my spirit. 

My second thought is of Jacob, Kaley, Sam, Luke and Zoe.  For those of you new to our family .. they're all adopted too (like Manny) and are ages 11, 10, 8, 7, and Zoe will be 5 on Tuesday.  They all have special needs as well.  I want to help THEM in all of this too.  We haven't even told the kids any of this news yet.  I wanted to wait until I got home first and had a decent night sleep before I tackled THAT conversation. 

The next visitor was the nurse who was training me on how to use the pulse ox machine, the suctioning machine and the oxygen.  I am having an "out of body" experience as I go through all this.  I'm going through the motions, I'm learning it.  I'm writing down the instructions. But I think I'm numb or something.  It's like I'm learning all this for someone else.  I can't explain it. 

But every now and then, it hits me.  All this equipment IS going home with us.  He is going to need it.  I WILL be using it.  And especially the oxygen.  I have to take this protable tank with me everywhere I go.  (There's a bigger one being delivered to home.)  And he has a HUGE tank because his volume is pretty high.  They have smaller tanks if his volume was lower.  But he has the size you see grown ups dragging around.  And I think the only time I've ever seen them is with very elderly, very sickly looking people dragging around their oxygen.  And I can't even begin to imagine incorporating this in my every day life.  I take it into Walmart with me?  When we go to the park?  And it keeps making me realize just how much my life has just changed.  And I'm resentful of it.  Not of him, but of having to do this.  I just want my baby to be healed.  Perfect.  And I have all these reminders around me that he is not ... yet. 

Finally the social worker came back to bring the packet of information on the new program. 

And it's 3pm.  They started arriving at 7:30 am and I've had at least one person in my room since then until just now.  I'm mentally, physically exhausted.  I even woke up with a fever.  They say he's "immune" to me since I've been here with him the whole time and he's on IV antibiotics.  But still ... I worry. 

Now that I've been trained and we have the equipment, they've set the discharge for tomorrow morning. They've taken him off all meds except those he'll be going home on. Just to make sure he can still breathe without them.


And as I was typing this blog, he's sleeping in a little bouncy chair near my feet facing me so I can watch him sleep.  And he woke up choking.  He looks at me with these scared little eyes, "Help me, Mama." And this time I can help him.  I am able to "fix" it and he goes back to sleep.  But I realize ... one day ... I might not be able to.  And I can't breathe. 

EEG and a visitor

Today we had a visitor.  Tara is a fellow adoptive mom and we've chatted on line and on the phone but never in person.  Yesterday she asked if she could visit an I welcomed it.  So great to talk to a fellow mom who "gets it". 

She asked if I needed anything and I can't believe I did it but I asked her for a razor and some soap that didn't make me smell like the hospital.  (Trust me, I'm a LOW maintenance kind of gal so if I asked for something like this .. it was BAD! LOL)  She not only brought me that, she brought me all this.  There was so much stuff I couldn't get it all in the picture.  As I type this, I'm waiting for Manny to drift to sleep so I can use it!

Just as she got to the hospital, they said we were going down to get an EEG.  After an adventure to find it, they told me to lay on the bed beside him.  He did NOT like these electrodes on his head.   It doesn't hurt exactly.  Jacob has had numerous ones.  He was just MAD.  The nurse had to come with us because if he falls asleep even for a few minutes, he needs to be on oxygen.  I talked to him calmly and he eventually just calmed down.

Tara graciously asked if I wanted pictures of it and I was thrilled.  All the pictures I have so far on the blog are from my camera phone.  So these pics are all from Tara.  And I have so very few of him with me since I take all the pics.

We are doing the EEG to see if he is having seizures.  We need a baseline.  If he's not having seizures yet, that's a great sign!  If so, it's a bad one of how far the disease has spread.  We're praying for a good report!



As I laid there beside him and he drifted off to sleep, Tara was there and so was our awesome nurse Dana (more about her in another post).  He was having the hardest time sucking his pacifier.  He wanted to for comfort but he was not able to due to tongue miscordination.  And it just hit me.  Tears started to flow.  Not the wailing kind of crying but the kind where the water starts flowing and can't stop.  At one point I looked over at Dana and Tara and I think I saw tears.  I think you'd have to be pretty heartless not to feel something for this little boy.  Everyone who meets him falls instantly in love. 
Isn't he stylin' in his turbin??

Finally ready to share the news ... prepare yourself.

WARNING:  This is heavy duty stuff.

MY FEELING:  We're hopeful God will intervene with a miracle. 

HISTORY:  When we got Manny, he was EXTREMELY hypotonic.  Several tests had come back "negative" for genetic testing.  Since he's been home with us in 7 weeks, we have seen amazing strides forward in his skills.  He couldn't move his head 1/4 inch in any direction.  And he can now hold his head up for about 2 minutes at a time. He has some new arm movement and some leg movement - all new.  In addition, he is sounding louder ... in talking, coughing, crying. 

We knew that there was a major condition of some type and due to his early months, it was compounded by not getting the proper services and therapies. 

But we had a lot of hope that he was progressing in a lot of areas. 

At the same time, we know he is losing some skills.  For example, his birthmother bottle fed him until 8 months when it became very difficult and he was aspirating all the time.  This is why he had to be put on a gtube.  He's also losing the skill to swallow even his saliva.  Since we've been in the hospital, I'm noticing that his tongue isn't working with the rest of his mouth.  Like he wants to suck a pacifier but his tongue is thrusting it out and frustrating himself. 

THE DIAGNOSIS:  The brain MRI showed a degenerative white matter brain disease, Leukodystrophy. White matter controls some involuntary reflexes like swallowing and breathing.  (So pretty important.)   The white matter is in the front, middle and back of the brain.  And this disease affects one, then the next.  His is already completely in all three areas and beyond.  So he is considered "end stage". 

Children with this disease typically die of respiratory failure.  Their muscles in the lungs just give out and unless you put them on a ventilator, they often die very young.  (The blood tests have been sent out to find out which specific subtype this is.)

THE PROGNOSIS:  Considering how far his is already advanced and how quickly, yesterday, the neurologist said his best guess is that he won't make it 6 months.  Today he told me he might not make it to his first birthday (June 26).  Today we did the EEG which should help show if we're talking closer to the 1 month or 6 month. 

THE REALITY:  We know God is "Mighty to Save" (a song that's brought great comfort).  And we know God is Completely capable of healing him in an instant!!  We also know that sometimes He says "No".  And we have to be prepared for either reality.  So they are going to send hospice to talk to us about their services.  Social services is going to bring in a DNR form for us to consider. 

THE REAL STORY:  I'm grieving hard.  I knew he wasn't likely to live long.  But I feel cheated in the months and years we thought we were going to have with him.  So I have to figure out a way to make every day count.  That he feels loved to the core of his being.

You haven't left his room ...

I got the statement from a nurse,"You haven't left his room."  And you might be wondering why so here's a little background of how Manny's life was prior to us. 

(I'm inserting pictures of him prior to the hospital stay so you can all see his personality and cuteness!)

He had a very young mom.  She loved him.  It was clear.  He was well cared for.  Clearly loved.  He was well attached. 

But one day, she decided she couldn't do it any more with his symptoms progressing.  She said she doesn't want him to suffer. So she tried to take him to the Firestation to do the "Safe Haven" program.  She didn't realize it was only for up to 3 days old.  Since he was sick, they transported him to the hospital.  She signed surrenders and was gone. 

For the next approximately month, they did probes and testing.  He failed a swallow study (he was aspirating) so they did some surgery on him (gtube and fundoplication).  All with no mama there.  The nurses are great, but they're nurses and they have a lot of patients.

On March 26, he was discharged from the hospital with me. 

Then we came to the hospital last week.  And I can only imagine the thoughts going on in his little mind.  His world has taught him that Mamas take you to the hospital and LEAVE YOU THERE, then they torture you. 

I was not about to let this happen to him.  So for the first 2 days, I wouldn't even go to the potty with the door closed.  He watched me like a hawk making sure I wasn't leaving him!  If he couldn't see me, he would scream. 

So every waking moment, I had to be here lest he freak out.  But when he would fall asleep, his oxygen levels would go so low I had to carefully monitor them and make sure he was still breathing!  So I couldn't leave when he was asleep. 

I never left him.  Period.  THIS Mama ain't leaving!

______________________

Now an update:  Last night was the first time he was on oxygen the whole night.  No arguing.  No begging for oxygen.  And we noticed something amazing.  Up until last night his day heart rate is about 150 but his night heart rate is too.  It should decrease.  Even when his oxygen levels are high, his heart rate was way high and I knew this meant he was strained. 

Sure enough, his heart rate sleeping last night was 90!  Praise God.  And now today, even when awake, his heart rate is around 120.  So he was in distress.  I knew this.  I just couldn't get my message across.  But it's been heard loud and clear based on how quickly his vitals improved! 

This morning he got an EEG.  My friend Tara came by to bring goodies and took some pictures so later I'll post about that visit, our new "loot" and hopefully the pictures from Tara.  I must say, he was quite dapper with his turbin! :)

another "upgrade"

We've had another "upgrade".  We've moved from way down the hall, right next to the nurse's station.  This way, if I happen to step out for a second (which I don't do) and he needed something, they are RIGHT THERE.  But the coolest part of this deal is the room itself.  It's a double room.  This is a picture of his old room before the equipment was in there. I'll get a pic tomorrow of the new room when there's better light. Bad part is they said we might get a roommate and I cringed!  UGH. 

So I started praying.  I know it's a little thing, but Lord, please work it out that I don't get a roommate.  And I left it in His hands.  Then when they moved us over, the main nurse was positoning us in half of the room in case of the roommate.  I kept my mouth shut and just sent up my request.  The nurse was wondering how to get all his equipment in such a small space.  Then the charge nurse came in.  The nurse asked, "Can we block out this room so there's not a roommate due to all the equipment?"  And the charge nurse said, "Oh no, he can't have a roommate."  I have no idea why but I'll take the special favor.  Thanks for taking care of us Lord! 

Daddy also came to visit us today for a bit.  He was here just as the Doctor came in to talk with me.  I had tons of questions.  But our MAIN one was about a possible discharge plan.  He said unless his status changes, the plan is to go home Friday!  Yippee!! 

They are sending equipment to our house on Thursday so it will be all ready when we go home. For now, he will have his nebulizer, his gtube feeding machine, a pulse ox (measures his oxygen in his blood), an oxygen machine (he'll need every time he's asleep or napping) and the "vest" (which is this cool thing that wraps around the body and then air is blown in and it shakes him to loosen up congestion). 

They're talking about eventually setting up home health care for us if needed.  And at that point in the conversation, my eyes glossed over.  TMI.  Brain full. 

They took blood today ... IV went really well thankfully - first stick.  And they're sending it off for results.  Not sure how long until they're back.  I'll ask the neurologist tomorrow. 

But for tonight, Manny is just about to drift off to sleep.  We have orders that say he MUST MUST MUST not be taken off his oxygen overnight under any circumstances... and instead of arguing with a nurse tonight, I must call our Doctor at home.  (And he says he'll be *&^%$.)  So hopefully ... we'll get a good night sleep tonight not worrying about oxygen. 

I'm getting all the comments and emails and they are my lifeline.  Thanks also for sending word about him and his need for prayer. 

Love to all, Beth and Manny

Friends, next steps and random thoughts

All day today, I just haven't been able to write the blog with the info the Neurologist gave me this morning.  I will.  I promise.  But I need to tell Dan first ... and he's on his way to the hospital soon.  Once we talk, I can then tell everyone else. 

So in the meantime ... thanks for all the friends who have written personally (goredan@hotmail.com) or left messages on the blog or on facebook.  I'm not able to comment to all of them but each one is reaching and healing parts of my heart.  I appreciate all the support and comfort.  I don't feel so isolated in this tiny room. I am truly thanking God for my friends!

Enjoy some pics of Manny with his "friends" interspersed in this message.   

I CAN tell you the new things that are going on around here.  They have ordered a sleep study .. I think for tonight.  An EEG (to see seizure activity).  A urinalysis.  And a couple of genetic blood tests.  (Not looking forward to the IV stick to get that!)  But this is all an attempt to help determine the EXACT subdiagnosis under the main diagnosis.  It's also to determine how far the disease has spread and it will help pinpoint treatment possibilities. 

I sit here in disbelief.  One part of me just wants to S C R E A M and run and yell.  Another part wants to completely shut down.  There's a part of me who wants to fight it too.  I know the only ONLY hope of surviving this is a major miracle.  A MAJOR miracle ... and fast!  I know God is completely capable.  And I also know that God sometimes says, "No".  So I tell Him my request.  I beg Him to heal this precious baby.  I PLEAD with Him to take this all away. 

And yet I sit in the possibility that He will decide to take Manny anyway.  And I can't handle that thought right now.  It makes my brain bypass.  It won't compute.  So my brain goes to these completely strange little things.  Like the photo ... I want a great family photo.  (And I have friends who are working on that for me!)

I'm actually quite amazed at how my brain is coping with this by focusing on these tiny, meaningless things.  I'm very thankful for internet, email.  I'm appreciating all the comments and support.  Keep them coming.  And keep spreading word about one of God's precious children in great need.  I know He loves Manny more than I do.  Let's let God know how much we all love him too!

And the world goes on

This morning at 7:45 we got some devastating news.  I cannot even begin to bring myself to type the words yet so for now, just know we need prayers more than ever.  Please send this blog around the world.  (If anyone knows how to make those picture links so people can put them on their blogs, please let me know.)

Right after we got the news, I got up and dressed.  I opened the shades to the outside world like I do every morning.  And I noticed something. 

The world goes on. 

My world inside this little room just stopped.  Cold. Stop.  Keep having to remind myself to breathe.

But outside these walls, the world goes on.

Upgrades and arguing for oxygen

We've been here since Friday and I have had this one chair.  It's a fine chair.   I mean as chairs go ... it's a place to place my hiney.   See?  It's a perfectly respectable chair. 

Today when we went down to get the MRI done, they gave him meds to put him out and they had this type of chair but they also had a comfy one and I thought to myself, "I would like a comfy chair in my room.  I wonder if that's possible." 

So we get back to the room and I asked nicely.  And within about 2 minutes, THIS one arrived in my room.  Aaaaaah.  I am liking the ugprade!!

So now I can hold him easier.  He's already hard to hold due to the hypotonia.  But then throw in a sore gtube site, an arm board with IV, a pulse ox on his foot, and he's out of it from chloral hydrate ... he's downright impossible to hold in that first chair.  THIS one was great!  Thanks to Krys our day nurse. 

He also got a quick sponge bath and an upgrade on his outfit.  He's been wearing those pretty yellow ones.  But she thought he'd look cuter in this new type.

 

On a medical note ... his Doc came in and asked how he was doing and I told him we were a bit tired from the pulse ox going so low each night but that I was faithfully rousing him (per nurse orders).  He asked me to describe what I do and for how long and I did and I could tell he was NOT happy and said he was going to go yell at the nurses.  I reminded him that it's not the day nurses, but the night nurses that are doing this.  He says, "I know, but THEY'RE not here!" 

So I asked for CLEAR instructions on what to do and when to call the nurse about the machine beeping.  He said, "If it hits 92 ONE time, I want him on oxygen."  REALLY?  I told him it does that while he's napping (which he was about to do). 

He left and a few minutes later the IV team came in and were able to get a line in on the first try using an ultrasound machine.  They are awesome!  And so compassionate!  They love our little guy.  But they told me they've worked here for YEARS and NEVER NEVER heard this Doctor yell but that he was YELLING at the nurses!  They told me he said, "This kid is NOT going to die in the hospital!"  (Making sure they were clear on his instructions and the severity.) 

Baby fell asleep and it was only a few minutes until he hit 92.  I let it do it 2 times before going to the Nurse's station and telling her.  When she got there, his number was 93 and she started arguing with me telling me.  I reminded her that the Doctor said if he hits 92 even one time, even if he's able to recover, he wants oxygen.  She argued with me that she couldn't start it with him at 93 since the order said 92.  I told her to stand there for a second and he'd dip down.  (I've been watching his pattern since Friday, I know my boy!)  Sure enough, 2 seconds later it dipped.  And it kept beeping until she got the oxygen on.  (Which he HATES since his nose is raw from suctioning.)  But she reluctantly did it.  (Still not sure why this is such a big deal. Maybe someone can explain it to me.)

He went back to sleep and his oxygen levels are now between 95-98.  Which is good.  (100 would be better so it's saying he's still not getting QUITE enough.)   But I think I might be able to sleep a bit tonight. 

Well ... except for every 4 hours when they have to suction him, put on the shaking vest and do the cough assist.  But at least I won't worry that he will crash and not be able to recover!  Maybe we can actually sleep tonight!