Sleep Study

For days now, Manny has been waking up at least once an hour.  Sometimes it's every 15 minutes.  He cries or screams.  I think it's some kind of pain but where?  And how to fix it?  Who knows.  So instead, I wake up and "rotate" him.  I reposition him and it seems to take the edge off enough to let him fall back asleep. 

Thankfully he sleeps in a crib that is right next to mine so I can do this without leaving my bed.  (Good planning on my part.) 

Well after several days/weeks of this ... the sleep depravation adds up. 

So the irony of it being a sleep study last night cracked me up.  I kept wondering how *I* could sign up for such a gig ... actually EXPECTED to sleep. 

Why a sleep study?  Back in May with his diagnosis, a sleep study was ordered to determine if he was trading oxygen for carbon dioxide ... basically shows how effective his lungs are.  During that hospital stay it was determined he would need to go home on oxygen due to desaturation.  Somehow the sleep study never was brought up again and I thought it was due to him going home on O2. 

The other day his pulse dropped so low for so long and we told the pulmonologist about it and he ordered it done.  So we went last night. 

Wires.  Everywhere.  Tubes.  Everywhere.  Baby.  Not thrilled. 

He was asleep by about 10 pm and by 5am they woke him up and we were gone.  She came in several times during the night. 

Everything was fine with the whole evening except this one thing ... she said she was not allowed to give him oxygen unless he desaturated a certain amount for a duration of time.  (Any of this sounding familiar to anyone?)  I kept having flashbacks of the hospital when the nurses and I (in my sleepy state) would be arguing about how his doctors ordered oxygen for him. 

Anyway ... there is no pulse ox in the room ... she has the machine with her in the other room.  She said that if he dropped even once she would follow the doctor's orders and put him on the oxygen.  She never came to do that so I was actually thrilled.  I kept thinking ... "Maybe he's better!  Maybe he doesn't need oxygen at night any more!" 

But my hopes were dashed and my anger grew as she told me this morning that he did indeed dip several times but that SHE made the judgment call not to give it to him.  aaaaaaauuuuggh!!! 

So ... I have decided what to do about it.  (After calming down.)  I will call the Pulmonologist (who ordered the sleep study AND the oxygen) on Thursday and ask for the test results.  I will then also ask for clarification of when he needs and doesn't need oxygen.  I need clear guidelines.  I will then ask them to give it to me in writing.  With their signature and their phone number on it.  I never want to find myself again arguing for oxygen for the baby!!  I've done it too many times already. 

In other news: Last night was his last dose of his 2 oral antibiotics.  And around noon today I noticed he has a new spot on him (the ones they diagnosed as MRSA).  By 2pm he had a 102.8 fever.  By 5pm I noticed a second spot on him but fever is down to 101.4  and he is a grump.  There is a rash starting on his face too.  (sigh)

But ... tomorrow I will be seeing his pediatrician at 9am and she is going to help me sort this all out.  AND we are going to discuss the possibility of him being transfered from palliative to therapeutic care.  (More discussions about that on the blog to come.)  But basically we don't want him to be denied services due to his prognosis. 

Finally, I called the Neurologist office today to see if I could get some answers from them on this subject.  And quite honestly, the nurse combed through his file and the ONLY diagnoses she could find were "hypotonia" and "possible seizures".  NOTHING, not ONE thing about a terminal diagnosis.  So now I'm wondering who gave him that prognosis?  I was told them.  But they say no. 

Very interesting!

A Special Bond

Kaley was the first of the kids that met Manny.  She went with me to the hospital in Orlando to help pick him up.  I wanted someone in the back seat with him to make sure he was doing well.  From this first moment he saw her, he was entralled with her.  (And she was likewise with him.)  This is the moment they met.  I still have that outfit Manny is wearing along with one of the blankets he is sitting on.  This picture is from March 26 ... it was the day he was 9 months old. 

They have this special bond.

I think she as this innate ability to know how to help him, how to play with him.  I think she might just become an occupational therapist due to all this.  She just has this FEELING about what toys to place in his hands to make his fingers open a certain way ... or what things to prop under his legs so they don't do the frog position ... or how to prop his head just right so he can reach further. 

She started school this week and he kept wondering where she was during the day.  He would look over at her car seat.  I wish I could explain it to him. 

But when she gets back in the car after school, he squeals with delight.  He is ready to play with his big sissy.  And she is more than ready to play with him. 

Preciousness

What is it about a sleeping baby that just makes you want to stop. 

And stare. 

And be.

At that moment, I can think of nothing I'd rather be doing than sitting RIGHT THERE. 

Something about the angelic look on the face. 

The peace. 

School, Meltdowns and MRSA

Today was the kid's open house.  Went great.  It felt really nice to walk into the school knowing where to go, where everything was, how it worked.  Everywhere we went there were kids, teachers and administrators who knew us.  Felt great.  

Today was the first day back to school.  Zoe (Kindergarten) RAN to her classroom, hugged her teacher and sat in her seat.  She waved "Bye Mom" and never looked back.  This wasn't surprising since she has been counting down the days since preK ended in June. 

Sam walked into 3rd Grade... pretty much all business.  Matter of fact.  Found his desk gave Dad a high five.  And that was that. 

Kaley was a bit nervous entering 5th grade.  Last year started off a bit rocky.  It all worked out eventually - she found friends, got a 504 (special assistance) and teachers that adored her!  But this year, she thinks it's back to square one.  But truth is ... she already knows some kids, her best friend is in her class and the teachers already know what kind of accommodations she needs.  (But she doesn't understand that yet.)  But when she walked in, she found her desk.  And she is sitting between Luis and Fernando ... the EXACT same two people she sat beside last year!  (Apparently, her 4th grade teacher discussed some ideas with her new teacher!) 

Luke ... oh my.  I wasn't prepared for this.  Last year for 1st grade, he walked right in and did great.  I expected the same thing.  Instead, it was a 45 minute breakdown.  He's bipolar and he tends more towards the depressive side than the manic side.  What triggered it?  There were no assigned seats.  He had to pick his own desk and it was just too much.  I sat with him for a while.  I took him out in the hallway when he was crying too hard.  I eventually had Dan talk with him.  Eventually, bribery worked.  (sigh) 

Jacob ... things haven't worked out to get him accommodations at the school yet so we didn't feel safe to leave him there yet.  We were prepared to go and discuss it with them today but he woke up feeling flu-like.  So we called him in sick.  Gives us time to work out the plan for him. 

Manny ... he has this horrible infection around his gtube site again!  Started Friday.  The topical antibiotic isn't helping enough.  The site is bleeding, oozing pus, looks horribly painful.  He also keeps getting these quarter to half-dollar sized red marks with a blister in the center.  They're all over his body.  Gets 1-3 every couple of days.  Called the doc but she was out sick and sent us to the E. 

Verdict:  MRSA.  (sigh, just to type that).  Left with 3 antibiotics. 

So that's my morning.

Love that fresh morning face!

Pumonologist update

"Cheeeeeeese!"

Friday Manny had one of the scariest nights ever.   

Remember how we used to be scared by his gagging/retching episodes?  The doctors thought it was seizures but turns out it's related to his tummy not emptying as well as it should.  We have that pretty much under control.  I adjust the rate, the volume and it usually works.  If not, I suck some of the stomach contents out and voila.  Instant relief.  (Which shows it's likely tied to his nissen fundoplication or to gasteoparesis.)  So these episodes are few and far between, we know what it is and we know what to do. 

So of course, he decided to start something new.  Friday night he had a bit of congestion (pretty typical for him periodically).  Just to be sure he was getting enough oxygen, I put his pulse ox on.  It was fine but his heart rate was almost 200!  He eventually went to sleep like normal and we left his pulse ox on.  He was breathing "weird" (the technical word - LOL).  Hard to describe, just not right.  Normally, we wait about 10 minutes after he falls asleep to put his oxygen on ... but before we could do that, his pulse ox was alarming. 

Instantly, we put the oxygen on ... and no effect.  He was continuing to decline.  It was hitting the low 70's by the time I asked for prayers on my Facebook status update. 

We systematically went to decide if it was a malfunctioning baby or a malfunctioning equipment.  Oxygen working? check.  Probe on right? check.  New probe? same. etc etc. 

We woke him up and it would quickly go to 99.  (Proving the equipment was working correctly.) 

By the end, he had hit 66.  WITH oxygen on.  And I was packing for the ER.

Then all of the sudden, it stopped.  He went to 98 while asleep and stayed there the rest of the night. 

Since then, we've had a probe on him 24/7.  We noticed he dips when he falls asleep, when he wakes up and is fine the rest of the night. 

Today I told the pulmonologist all about it and he instantly ordered a sleep study.  Mostly he is interested in respiration (C02) levels he said.  That's scheduled for August 30.  (He wanted it sooner but the only available day was the first night of school for the kids and I didn't want to leave them.) 

Another goofy thing that happened today was we have a script to get the baby a blood test for SMA (Spinal Muscular Atrophy).  We had the baby fast and went in.  Let's suffice to say ... I have a new story for my classes about poor customer service.  I left LIVID with no test done.  Follow up story to come I'm sure. 

Always an adventure around here. 

What a great day!

Yesterday the kids and I journeyed over to Disney (about 1 1/2 hours from our house).  The goal was to meet 2 fellow families with adopted kids.  But the journey got even sweeter. 

On my way over, I got a call from Sherrie.  We've known each other for 11 years now.  We met because we were both adopting transracially.  But turns out our paths were quite entwined.  For example, our daughter Kaley was born 11.11.99 and taken to St. Joe's Hospital in Tampa.  On 11.18.99 Sherrie's son Jordan was born in that same hospital.  Cool part is, Kaley was still there in the nursery at the time.  So we know they were there at the same nursery at the same time.

2 years later, they adopted a daughter, Kaylena, who was born on the same date as Jacob July 7.  Cool, huh?

So we spent the day wandering Downtown Disney.  Hot but fun!

Then about 6pm Maureen got there with Olivia, her daughter (adopted from China like Zoe).  And bad blogger than I am ... I got NO pictures! Yikes.  Maureen did though and will be uploading them soon she said. 

About 7pm, another family arrived.  Tamara with her son Logan, daughters Meison and Greyson (adopted from China as well) and mother Penny.  I found it amusing that out of 10 kids, only one was "home grown". 

Logan (16) and my Jacob (12) seemed to hit it off nicely.  Jacob loved asking questions about school mostly since Jacob is just entering middle school and Logan is a Jr. in High School.  I don't think there was a pause through all of dinner between them. 

Manny did great (as expected). Cooing, talking, smiling. I know many of them have been reading the blog regularly and wanted to meet and hold him. Since we'd been outside sweating all day, I know he wasn't 100% himself but they still got a sense of his sweetness and his general personality.

All the "littles" sat at one table and the "bigs" sat at the other.  Dinner was over all too quickly and we were saying our good byes, just after it got started it seemed. 

We drove home and the kids were chatting the whole way.  Asking when we would see our new friends again.  11pm and they were tucked into bed. 

I muse on the world I'm in ... where there are kids who are of all different races; kids have various special needs; kids come from all over the world; kids were wanted and chosen. 

"Adopted" ... one of the BEST words in the world.  And I am blessed to be a part of this glorious world. 

More medicaid woes

So you know how everyone came together in a mad rush to help the baby get his medicaid back?  Judge, attorney, multiple social workers, etc.  Everyone got all their parts done by noon last Friday, August 6 (just hours after the adoption for what normally takes weeks). 

They told me it would be in effect on that Monday so Monday through Thursday last week, I called every day and still no progress.  He was "inactive".  Then we started back at the beginning to see what went awry.  They again traced it down and worked to get it done.  They said that by today it would be all done. 

Nope. 

So back to square 1.  I called this guy named Daniel and he called the big, big boss and stayed on the line until they changed it.  Then in the morning he will call to confirm it and call me either way.  So it's a possibility that we'll have insurance by tomorrow. 

The reason this is a problem?  The baby is out of numerous medications.  He is out of gtube supplies (and without a friend Angela W, we would be in HUGE trouble).  Then starting today, specialists are refusing to see him. Tests are being delayed.  And he is sick. 

Think I'll send Daniel a pie or something if he can pull this off! 

Meanwhile, Sam (who will be 9 in a few days) and Luke (7) both have intoeing and their ankles are "collapsing" inwards.  Doc sent them to the Podiatrist who said they immediately needed orthotic inserts in their shoes and if that doesn't work, they'll need leg braces.  So the last picture is of the boys getting their feet measured for their inserts.  They feel this is SOOOO cool!! 

The top picture is of Manny playing with PlayDoh ... he LOVES it! 

Oh Happy Day!

The day started early ... too early in fact.  And I kept telling myself and the kids, "He's worth it!"  By 5:30am we were loading up the car.  Quick stop at my parent's house and we were on our way to Orlando in the pitch black.

Eventually we arrived at the courthouse and had quite the fun time getting through the security.  It was actually quite funny!  Sam had to take off his belt ... which made his pants fall down.  (Isn't that the purpose of the belt afterall.)  They went through EVERY bag, every diaper, looking for something in each bag.  Of course I had something that caught their attention in every bag.  Nothing that was objectionable, just things that RESEMBLED objectional items.  (I think it takes a lot of talent to be able to pull that off.)  Jacob was the funniest though as he had a toy in like each pocket of his jacket!  There was even a gum wrapper in one of the inside pockets ... a pocket he didn't know existed.  (It was a used jacket.)  That security officer was even laughing by the end it was so funny trying to find it. 

After that, I was exhausted and the day hadn't even started yet!  16 floors of a jam packed elevator ride later, we were there.  (And YES, he is wearing a bow tie! Aren't all the kids handsome/beautiful?)

It was at that moment we met Steve Price (attorney).  He tells us that the Judge wasn't even supposed to be IN today and was only coming in for THIS case!  She switched this around so we could get this done today.  

About 5 minutes before 9am, Manny fell asleep.  Then it was time for court.  The attorney asked us a few basic questions about our names, address, how long we've been married, if we understand the legal implications of this and why we want to adopt Manny. (The Judge had a tear in her eye by the time we told our answer about why we wanted to adopt him.) The whole thing is about 5 minutes. 

Next we got to take a picture with the Judge. 

Quick trip down to get a copy of the judgment so we have legal proof he is our son.  (His birth certificate will arrive in about 4-6 weeks.) 

Then our social worker, Megan, got a call about the medicaid paperwork.  She said everyone had been working on it and if we could come over to their offices then, we could sign it and kick in the medicaid!  No way!! No one even thought that was a possibility!! 

Today was a GREAT day!  Not every day you get to add a new child into your home. 

We are truly, truly blessed.

Sped up adoption and Chuck E Cheese pics

A few weeks ago, we were waiting for TPR (termination of parental rights for the birthfather), hoping the Judge would grant the petition to waive the extra month customary post TPR before setting the date for adoption.  She did!  And the date was set for August 13. 

Then, we discovered there was a glitch in Manny's medical coverage.  As of August 1, he has no health insurance (NOT a good thing for a medically complex baby who is currently symptomatic and on regular home visits, has durable medical equipment, etc.). 

People came together in a MIRACULOUS way!  Remember ... we did 9 years of foster care and we know what it is like to deal with this system.  (Run-around is the best word.)  This time, people dropped everything to get this baby coverage.  There had been a mistake along the way (no one is quite sure who or how and it's irrelevant anyway). 

We found that the day we adopt him that a different type of medicaid kicks in.  And they will make it retroactive to the first of that month.  Sooo ... the attorney contacted the Judge and told her of the situation and they changed the adoption date to THIS Friday, August 6 at 9am.  Meanwhile, there are still papers to be gathered and signed but everyone is working feverishly to get those done.  But the adoption authorizes all those to get started. 

So tomorrow morning (very, very early) we will be headed to Orlando County Courthouse (about 2 hours away) with the whole gang, plus my Mother and Father.  And by mid morning, we will officially, legally have a new addition to our family.  (And yes, it's still very surreal that we have 6 SIX kids!) 

Today ... we went to Chuck E Cheese.  Manny usually just sits at the table with me as the kids scatter.  But today, Kaley asked if she could take him on a ride.  The pictures are from some of the rides he so thoroughly enjoyed today!