Manny has had a ROUGH day

I wrote quickly about the IV problem.  It was fine and then it was horrible in no time.  They call the arm "infiltrated".  The fluids/meds they were giving him went into his arm instead of his veins.  That's a problem.  Honestly, I wondered if his fingers were safe or in trouble.  They were the color of a purple plum.  And his hand was pure white. 

His arm from finger tips to shoulder feel like a potato.  Absolutely no give.  Everyone on the floor has heard about it apparently and an incident report had to be made.  Of course, it was no one's fault.  It truly just happened.  Had I not been IN the room the whole time, I would have wondered but as it was, I know what happened. 

So he needed a new IV.  On Friday when we got here, they had a hard time finding a vein.  They finally found one they could do and after working at it for quite a while, the vein eventually 'blew'.  Rather than trying again, they called the IV Team in.  She got it on the first try, but that was after searching high and low for a vein that would work. 

Today, they didn't even try to do it and immediately called the IV team.  The one vein is still blown from Friday.  The whole other arm is completely unusable.  So they started on his feet.  They did a stick on each foot and blew one vein and had to give up on the other one.  Then they tried the arm (non hurt one) and blew that vein too. 

Now as horrible as that sounds, it's really sad because he can't fight them.... and he has the world's most pitiful cry.  But I am here watching them.  I see how hard they are working!  They are truly trying to help him. 

So why are his veins so bad right now?  He was already a bit of a tricky one.  But he's retaining fluids.  In fact, he was 15 pounds, 10 ounces when he arrived.  On Sunday, I noticed he was a bit "puffy".  He weighed 17 pounds 15 ounces!  He's gained 2 pounds 5 ounces in 48 hours!

As I sit and type this (5:15 pm Monday), they still haven't come back to do the IV.  They have to have 2 people and a special ultrasound machine to find a vein.  So in the meantime, he's not getting the fluids and it's giving him a chance to de-puff.  But he's also not getting his meds.  They'll be back soon I'm sure. 

His tummy is completely torn up from all the antibiotics too.  Poor guy!  His GTube site has an infection.  (They're putting antibiotics on it and he's getting IV antibiotics.) 

Finally, they've started him on some new meds and new treatments to help loosen up his lungs/congestion.  A typical kid could cough it up and get it moving but his muscles are so weak, it just sits there.  We don't go home until they're cleared!  Yikes. 

He has also been started on some treatments.  One is this vest that goes all around his tummy and shakes him vigorously.  He LOVES it.  He thinks it's a game.  But he also has this treatment called "cough assist" which inhales and exhales for him via mask.  He HATES it.  He acts like he can't breathe.  He got so upset that he was a sweaty mess.  He gets those every 4 hours around the clock.  Won't THAT be fun?

I'll post some more "lighter" things later.  I just want to keep everyone informed on what is going on. 

Thanks for the love!

Never a dull moment

How's that for cuteness for the day.  The respiratory therapist (and I) feel like this is the best position for him.  And he loves this little swing.  He has access to many toys right around him.

He had a pretty rough night with his oxygen levels dropping quite a bit, quite often.  But I've discovered if I wake him up, they go right back up.  So ... they were going down a lot so he and I were awake ... a lot. 

This morning, they came in pretty early so he was still tired.  They took him off his feeds at 4am because he was going to have a sedated MRI of the brain.  10 am they took him back and gave him chloral hydrate which knocks you out pretty fast.  But between him being overly tired and quite hypotonic, he was out in less than a minute.  But his oxygen was immediately very low so they put him on oxygen through the whole procedure and until we were back in the room. 

Since then, he's been having a very hard time keeping his oxygen levels up and it's very hard for me to rouse him enough to get them up.  They may need to do a boost of oxygen until this drug wears off. 

He was quite, quite grumpy and very sleepy.  In fact, it's 1:30 as I write this section and he's still asleep.  BUT ... there's a new thing that just happened.  At noon, the nurse checked his arm where the IV is and all was fine.  By 1:15 his arm is soooo swollen, fingers are purple and he can't even begin to move it.  His arm is as hard as a rock.  They say it will take 1-2 days to go down. 

I'm waiting for the IV team to come in and get a new one started.  He was very difficult the first time to get this vein and they had to be called in so now they're calling them back in again. 

In the meantime, we saw the 2 specialists we've been waiting for.  Neurologist says SMA is possible but he thinks it's not because his muscle mass is normal and it doesn't look like he has any atrophy ... which would have started.  Plus, he doesn't have any tongue fasciculations (a weird way of moving the tongue).  So yippee!  He thinks no.  He's anxious to find out the results of the MRI in the morning.  And then we go from there.  He's also ordered an EEG for tomorrow morning. 

The pulmologist also came in and he is changing up his meds a bit and instructions for the respiratory team.  He's also going to work on getting me some equipment at home.  He's ordered a sleep study since he's having the low oxygen every night. 

I'm feeling very very optimistic that the team is now on the case.  People, who are experts at their jobs, are putting their efforts into finding out what is going on with my little man and how to help him! 

Visitors

Yesterday, our dear friends Rich and Elsa came to visit. I neglected to get a picture of them for the blog but I got a picture of the balloons they brought.  Every now and then, the wind moves them and they catch his eye.  He's very mesmerized by them.  Silly me, but I also didn't get a picture of the HUGE HUGE fruit bowl they brought me!  It was awesome - all cut up fresh fruit.  They know me! 

Funny story about that ... the baby was off of feeds since Friday morning.  They were giving him IV fluids so he wasn't dehydrated but that's not the same thing!  He was definitely hungry and he was getting weakened, even for him.  Like for those who know him, he wasn't flirting with his eyes, wasn't cooing, wasn't laughing.  Now the baby is on a status of NPO or Nothing Per Oral (meaning nothing to eat by mouth, all has to go in directly to his stomach via the gtube) and this has been the case since Mid March. 

But as I opened up that fruit bowl and shoved in a bite of Mango (gratefully) he started whimpering!  I actually had to hide when I would take a bite I felt so guilty.  Thankfully, it wan't too much longer that they decided he was stable enough they could start back up his feeds.  He perked right up instantly!  Started cooing, laughing, flirting, moving.  Nice to have him back. 

Anyway .. Thanks Rich and Elsa!  It was awesome. 

Today my parents came by.  (Bad blogger ... no pic of them either!)  They brought me salad with a grilled chicken breast.  (I'm so thankful to have people who KNOW me and what I like without even having to ask!)  It was strange the memories that came up ... the last time we were all in a hospital was with Dad in the bed after replacing his ruptured aortic valve.  Not happy memories - but the ending was great!

Then as Mom and Dad were about to leave, Dan brought the kids.  They hadn't been here and I haven't seen them since I sent them to school Friday morning.  We've talked on the phone but that's not the same.  I loved watching the baby's reaction as they all came in.  He laughed easily at them.  I think it did his heart good to see them.  Probably really good for the attachment process  ... to see people he knows and loves come back in his life.  (Unlike the last time he was in the hospital.)   Dan brought me changes of clothes (since we don't know how much longer this will be) and a few snacks that I love (like microwave popcorn and a cauliflower ... I know, I know.  I'm aware that I'm strange.)  And Kaley brought the baby a bag of toys and a few movies she thought he might like.  (We can watch them on my laptop.) 

Finally, as I was hugging all the kids goodbye (and they were very emotional wanting to stay with me), Dan said he wished he could pick up the baby and I told him he could.  We'd just have to rearrange wires but of course he can hold him!  Is there anything more precious than a Daddy holding a baby??

So thanks to all the visitors.  We loved all the things you brought to us and for making us smile.  We love you!

Breath ... it's kinda important

Friday night Manny's oxygen (O2) levels went down quite a few times and stayed pretty low.  When it does that, there's this buzzer that goes off.  It's only alarming in my room (not at the nurses' station) so I have to notify them.  

So I did.  The first time, the nurse blew it off since his levels were back to normal.  His O2 kept dipping but quickly recovering.  So we ignored it.  But then it started dipping very low and staying down.  So I got the nurse.  She again blew it off. 

She went into this long speech about how she was trained to look at the child, not the numbers.  That if they're not gasping for breath, not blue, etc.  then it's not a big deal.  I questioned her considering Manny has very weakened muscles.  She said to ignore it. 

So needless to say, all night Friday, it sounded and I got very little sleep.  Just praying.  I was looking forward to seeing the pulmonologist and asking HIS perspective on it. 

On Saturday, our regular hospital doc came in (the one who did some major detective work in finding Manny's genetic test results).  He asked how he did over night and I started describing the low O2 levels - in a matter of fact kind of way.  And he freaked out!  He was very upset and asked who the nurse was, etc.  He said he would write the orders more clearly and make sure everyone knew to make this baby's O2 levels a high priority. 

I asked him the criteria for calling for the nurse and he gave them to me.  He said if they dipped low and immediately recovered several times in a row - he needs oxygen.  Or if it dips low and stays for a few seconds - he needs oxygen. 

He went out and talked to the nurses and respiratory staff.  I know he was upset with them all (even though THEY weren't the ones on during the night) because they all kept coming in checking on him.  (Oh, and the same nurse was going to be assigned to him Saturday night and he got that changed!)  They got all the oxygen supplies in the room.  They fitted him for an oxygen mask.  And they even put the tube on his face so all they would have to do is flip the switch if he needs the oxygen (Which he HATED.) 

He hates it because they suction his nose every 2-4 hours and he hates that.  Then it makes his nose all red and raw.  Then this is stuck in his nose. 

So we were all prepared for the night.  I had a piece of paper and pen ready to record the events so I could accurately describe them and not rely on my blurry mind to recall it accurately. 

Saturday night, he had several episodes where it went low and back up immediately.  The first time was just as the respiratory therapist was coming in to give his breathing treatments and suction him anyway.  It worked.  Then it happened several more times and I thought they were going to put him on oxygen.  But they didn't. 

At 3:43 his numbers went to 84 and stayed for over 30 seconds by the time it came back up. I called for the nurses and respiratory therapist.  The closest nurse came in and started the oxygen and he immediately went to 100.  She stayed until the regular nurse and respiratory therapist came in.  They turned off the oxygen and suctioned him (which wakes him up and makes his levels go up).  And then they decided to leave him off oxygen. 

At this point I was quite conflicted. I don't want him needlessly on oxygen for lots of reasons (One is that we can't leave until he's been oxygen free for 24 hours).  But at the same time, I know exactly what the doc said and he wanted him on oxygen.  So I'll be interested to see what he says today about their choice. 

Finally, he's still sounding "wheezy and crackly" .. which means we're not headed home today. 

Cherished moments ... dancing

I've been sharing a lot about Manny's physical condition.  The drama.  The tests. 

But I haven't shared much about how he is doing.  Here's a picture of me being silly and him looking at me on Mother's day (before the hospital). 

Manny is one of the sweetest, kindest, most gentle souls you'll ever meet.  We had to close our windows on our room to the hallway.  Why?  Because people would stop by his window and gawk... just because he is so cute.  How do I know that?  Because they forget the windows aren't sound proof and they stand there talking about how cute he is. 

When someone walks into the room, he immediately starts crying though.  Why?  Because most of them are coming in to probe him in some type of way.  And he has the most pitiful cry ever.  People feel horrible for having made him cry. 

A Child Life person came and brought him the coolest mobile for over his bed.  Along with a musical toy.  It's motion activated so all he has to do is move his hand near it and it comes on.  (And he can do that.)  Right now, he's "talking" to it.  But just a few minutes ago, I was dancing around the room to the music.  Doing Ballet type moves and fluttering around.  He LOVES that.  He is so appreciative that I find myself doing it way longer than I would like to, just to see his eyes light up and his precious smile. 

As I dance, I pray.  I wonder if he's ever going to be able to dance.  And so I dance FOR him.  I put my heart and soul into it.  Because I KNOW that if he could dance, that is the way he would do it.  All in.  All heart and mucho gusto!   And periodically I'm allowed to pick him up.  And he's so very weak as they're only giving him fluids ... nothing to eat.  So I dance gently with him.  He's so very thankful for the movement.  He thanks me with his eyes. 

What could be better?

So here we go again

Yeterday was an extremely emotional day.  From talking about DNRs for a potential fatal diagnosis to "Nevermind".  My eyes are still swollen today from the crying ... first out of pouring my heart out to God in pleading.  Then in pouring my heart out to God in praising. 

10am the Neurologist came in.  Immediately she asked about SMA.  I told her it had been ruled out and we got the results just last night.  She saw his symptoms and asked when the test was done.  4 days old.  She said she wanted it repeated as they can have a false negative that early.  She thinks it's SMA.  So here we go again. 

She also is ordering a brain MRI.  His one done at 2 weeks old showed normal.  But a CT at 8 months showed something abnomal. An MRI will show better what is going on. 

If the SMA test comes back negative, she wants to order a spinal MRI.  She thinks there's a possibility of spinal cord issue/injury/disease. 

If that comes back normal, she'll order a muscle biopsy. 

In the meantime, she also wants Manny to see the Opthamologist.  He does these strange things with his eyes and I've been wondering what it's about so this satisfies MY curiosity as well.  But you can also see some neurological things through the eyes so it's a pretty non-invasive way to rule some things in and some things out. 

On another subject of concern, through the night, he slept just fine (considering how often people come in to probe him).  He had suctioning once an hour.  Nebulizer every 3 hours.  Vitals (including temp ... the hard way) every 4 hours.  Fluids changed every 2 hours.  Well, you get the idea.  But he slept through MOST of it. 

But me?  Nope. 

Why?  His oxygen levels kept dipping very low all night.  The deeper the sleep, the lower the numbers and longer it took to recover.   We're thrilled a pulmonologist is coming by today.  Wondering what he'll think about what is going on and how to address it given how weak his muscles are. 

So we're still in need of some major prayers and More Miracles!  Feel free to pass this blog along to any prayer warriors you know.  They can become a "follower" or they can subscribe and get a notification any time it's updated. 

Love to all, Beth (tired Mama)

We got our Miracle!!!

I called for a miracle and one was delivered only a couple of hours later! 

Some details.  It is suspected Manny has Spinal Muscular Atrophy (SMA) type 1.  Which is always lethal and usually by the age of 2.  They go into respiratory distress and then eventually they can't be rescued.  It starts with bouts of pneumonia that get closer and closer together until they're sick all the time.  This has been happening with Manny. 

Secondly, a CT showed "concerning for neonatal xlinked adrenoleukodystrophy".  Which is also fatal, but usually by age 4.

Today, I have a doc in the hospital who worked to get to the bottom of everything.  He got hold of the actual Neurologist who had seen Manny initially at 4 days old and presumed SMA then.  But we can't get the records that showed it was positive or negative. 

Well ... THIS doc got them!  And praise God.  It is NEGATIVE for SMA!!!!! 

In addition, it's also negative for adrenoleukodystrophy!!!! 

He's negative for a few other things too ... but those were the biggies! 

I started bawling at the doctor and told him that a 100 pound weight was just lifted off.  He said he understood!  He said that no matter how much I'd read about how horrible SMA is ... it's worse than that!  And he was sooo relived that this precious baby doesn't have this. 

Breathing now for the first time all day. 

Thanks for storming heaven on his behalf!!!!!   Now storm heaven with your praise of what He has done!