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!