Today

Today in a nutshell:

Met with our new pulmnologist today.  I really like him.  He is one of the sleep center minions, which is exactly what we needed on our team.  Spencer has been having huge issues with sleep lately, and the new doc assured me that we were doing everything by the book.  He is consulting with endocrinology to see if Spence can have melatonin, if not we may be doing Ambien.  I hate the idea of medicating him, but at this point Spencer and I are both miserable.  He also wants Spencer to do a pulse ox test.  If he holds his own, which he has passed this test in the past, no more sleep studies and we can get the god forsaken oxygen equipment out of the house!

We then had a renal ultrasound.  Spencer was a nightmare during the test, although Elmo on TV seemed to help him calm down a tad.  The good news is that the peliminary came back clean.  No damange to the kidneys.  Dr. Alam may have something different to say, but so far I'm pretty pleased with the results.

We then met with Dr. Tamai.  Spencer has been having a few issues with his left leg bowing and the foot trying to turn in a bit.  We have to do exercises with him to keep it from tightening up.  Sometimes after spinal surgery kids start to get tight in the tendon.  If he gets too tight we will have to do another tentonomy and re cast...which would majorly blow.  But so far he is pretty optimistic. 

Our last appointment was with allergy.  We are allowed to try to start doing some eggs in bake goods and see how he processes it.


I forgot to mention, on the 9th Spencer said I love you for the first time:)  Of course it was all in Spencer-ese, but he said 3 distinct words right after I said I love you.

Ghosts

     When Spencer was in the NICU, I coped quite well.  I had a hard time right after he was born, which is expected I suppose.  I didn't want him to suffer...to live a life where he would be mocked and made to feel less valuable in a society where people with disabilities aren't seen as humans by the so-called norm of society.  Back then, I didn't know the gifts that he would bring to the world.  It took me a good two weeks to stop putting on a brave face and to take things head on. 
     Jimmy slowly retreated in himself.  It happens.  He still can't explain how he felt or why, but he was the poster child of someone suffering from severe post traumatic stress disorder.  It's no secret that we separated for a while, mainly because how each of us handled Spencer's birth.  To me, he became someone else entirely.  To him, my need to feel in control consumed our lives and obliterated his freedoms. 
     While the NICU days creep up and haunt me every once in a while, I've handled it all pretty well.  I've never felt consumed by it, until now.  I'm going to have another baby in 9 weeks, and I'm currently consumed in the thoughts that I've now given her birth defects because I used goo off on the kitchen floor liberally, or I was in the house while Jimmy was polyurethaning the floors or using mineral spirits.  I'm so anxious and worried that I've done something to her.  I'm fairly intelligent...I realize that the level of exposure I've had contains very small risks.  When I have done anything in the house, or even when Jimmy has, I've been well ventilated and haven't felt the effects of any fumes.  Even the OBGYN tells me I'm fine.  This all started when I had to wipe my hands off with paint thinner because I couldn't get something oil based off them.  Dumb, I know, but it didn't occur to me as dangerous until I still smelt it on my hands after washing them with soap. 
     It's all I've thought about all day.  It's not even the thought of having another child with Special Needs that bothers me...we can handle that.  It's me doing something that could cause her to have problems.  I can't shake this, and I'm worried the anxiety is going to keep on getting worse and worse. 

Hoho

     Santa came!  Well, that's what Spencer thinks....we think.  I've been talking up Santa and Christmas to him for a while now. We sat on Santa's lap, asked him for a Ipad and a Little People Carnival Train.  I got the customary wake up from the youngest nephew (he was quite excited this morning), and told Spencer it was time to wake up because Santa came.  Spencer was pretty much up right away and ready to go.  He eyed the Christmas tree as we waited for everyone to get up and watched Killian try to break into presents. 

    Jimmy and I vowed that Spencer would open the majority of his presents by himself this year.  I had to help him a bit and redirect him a few times, but he was totally into opening his presents.  He was so excited about the Carnival Train.  All the clothes he got was in bags.  He let me remove the tissue paper (I guess he didn't like how it felt), and looked inside.  Once he confirmed they were clothes, he immediately lost interest and went back to his toys.  He made out fairly well this year and had a great morning.

     On the downside, everyone is starting to feel lousy.  It started with my niece and now my newphew and FIL are coughing.  Hopefully it skips us!  

Eating!!

Spencer is self feeding!  Jimmy said he took a Teddy Graham out of his hand this morning and put it in his mouth.  He just ate a bunch of them on the couch.  He also ate a veggie "Cheeto."  I burst into tears.  I'm so incredibly proud of him.

27

    So here's the hospital stay post.  Many of you followed my cryptic messages on Facebook, but everyone may have not gotten the whole story.  Anyhow...

Day 1:  Day of surgery.  Spencer was super crabby that morning as the night before he didn't want to sleep.  We stayed in a hotel room which tripped him out.  He probably slept two or three hours.  We also found out that the operating room Spencer was going in didn't have an induction room.  For those who aren't frequent fliers in the surgical department, basically an induction room is where they put gas on the kid's face and knock them out, then take them into the actual operating room.  I've put my foot down when this has happened before.  Spencer knows the system and would flip the fuck out if we handed him to a surgeon and walked away.  With Spencer's complex airway history, many docs feel uncomfortable putting him under in the induction room across the hall.  This time we thought to ask about the induction room well before hand, so we agreed since he was pretty tired anyhow, that we would try some Versed with him to see if we could get him to sleep before we passed him off.  Spencer was high as a kite when we passed him off to the surgeons, and didn't even realize we had left.
     Surgery went fairly smooth.  We were told it would take four and a half hours, which would be Spencer's longest surgery to date which made us incredibly nervous.  Dr. Mangano was done in about two hours.  He said he the spinal cord presented itself as tethered.  He also informed us we'd be hospitalized another day, something we weren't expecting, because he counts surgery day as day zero (who does that??!!!).
    Spencer was sent up to the ICU after surgery, which is typical.  We were also informed we would likely be there for the entire stay, another thing we weren't expecting.  That night Spencer had one hell of a pain episode.  He tried to get up several times and went into tachycardia a few times.  Jimmy and I took turns holding him down, while the nurse kept frantically trying to get the doctors to prescribe something to ease his pain.  I guess the docs didn't believe all of us that he could be trashing around so much even though he had enough pain medicine in him to take an adult down.  I finally got fed up after 3 hours and told Jimmy to tell her to get the pain management doc and the resident in the room.  After that his pain was better managed.  At some point, Spencer stopped breathing.  I was watching the monitor and saw his respiratory rate go to 0 and his oxygen level quickly fall.  The nurse was running in as Jimmy was opening the door to get her.  In the meantime, I was shaking Spencer to get him to wake up.  The nurse put the O2 mask over his face and he quickly picked his stats back up.
      I have to mention, even though we told everyone to avoid it, Spencer ended up with an IV in his damned clubbed foot.  I threw a fit, but realized since he is such a hard stick we'd leave it for the night and asked for an ortho consult in the morning.

Day 2:  Pain was still an issue every three hours or so.  We were still struggling to find a good mix of meds that wouldn't kill Spencer.  Fentanyl was like water to him.  The resident ordered a metabolic panel, and discovered that Spencer has a very high metabolism which is likely why the meds go right through him.  He stopped breathing again, long enough for the nurse to say code blue but not have to page it, thankfully.   I felt so helpless when he cried because I couldn't pick him up since he had to lie flat. 

Day 3:  More of the same.  He slept a lot that day if I remember correctly.  Pain was being better managed and we only had one significant episode of pain with tachycardia.  At some point on this day I decided his gtube was super loose and tried to check the water level in the balloon. Couldn't get any water in or out of the valve.  Told them

Day 4:  Mangano decided we could get him out of bed, finally.  I got to snuggle with him.  Spencer was still pretty sore, but was wanting to be held a lot.  His Uncle Jerry came by and we went down to the gift shop to get him a giant Elmo balloon, which he was afraid of.  In Spencer's defense, it was pretty creepy. 

Day 5:  Got transferred out of ICU and onto the Neurology floor.  Spencer slept a lot but played a bit too.  He was sitting up a lot that day.

Day 6:  Was told pretty early that we were likely going home.  We were packed and ready to go by 1.  Didn't see Mangano until

Going in.

Today was Spencer's Neurosurgery followup.  Doc and I both agree that we need to go in surgically.  While Spencer's tether was non confirmed on MRI, there were several other abnormalities pointing towards it and it was confirmed by his urology study.  Surgery will be in early November.  He will be inpatient for five days, three of which he will have to stay laying down....that should be fun with a two and a half year old. 

We went to the zoo after his appointment.  He really liked these horse rhino things.  He also checked out the penguins, flamingos, and rode the carousel.  He was unsure of what to think about it, but didn't cry.  We were going to ride the train, but it was down for the day since they just replaced the engine yesterday.  We did get to watch it go by a couple of times which he loved. 

My monthly checkup for Spawn 2 was yesterday.   It was uneventful, which is good.  Just a month to go until the big scan!

The joys of Ohdo

Today was Spencer's first Behavioral Peds appointment.  While they will be quite helpful in planning for school and Spencer's IEP and 504 plans, it was still kind of a downer.  Spencer took a while to warm up to them, but went wild once they brought out the fun toys.  They are mainly concerned about his communicative skills.  He tested today on a 10 month old level for expressive language, and 12 month old for receptive.  I told them I believed that his receptive skills are way better than that.  While he is improving, it still sucks to hear all the stuff your child isn't doing.  They also agree that the best way to go is offering Spencer different means to communicate and see what he takes to best...this also means we need to get an Ipad. 
As far as his IEP goes, they agree with me that he needs a full-time aide at school.  They think he will need the individualized attention that an aide can offer, as well as the protection.  They agree it should only be a nurse if he requires cathing at school. 

We went from a bummer appointment to a great genetics appointment.  Doctor Hopkin is amazed with the amount of progress he has made.  He agrees with DDBP's ideas for Spencer's IEP including a whole language approach for his speech development.  He says we know Spencer is going to have physical limitations, at least for the first part of school, as well as communicative.  He also says we also know that he might have some cognitive delays.  He remains optimistic about Spencer's future and doesn't want to set any limitations on Spencer's abilities.  We have a general idea of what Ohdo is going to mean for Spencer, but we have been "plugged in" to the right services since the beginning and work with him a great deal.  He also agrees that Spencer will grow up to be a cranky old man, which is reassuring.  He does want the heart problem fixed sooner rather than later, and I agree with that as well.

I asked about the potential of Spencer having another syndrome.  Hopkin thinks that Spencer's spine issues as well as the bladder are just rare symptoms of Ohdo, which is actually comforting, especially with me being pregnant again.

Spencer has apparently been quite popular in the genetics department.  Doc told us when he first suspected Spencer of having Ohdo Syndrome, he told his peers who asked him what it was (yeah, it's that rare).  Then they said, "No way."  Then he showed Spencer's picture compared to the pictures of kids from a study, and they said, "Maybe."  Apparently everyone was floored when he was actually diagnosed with it.  Doc seemed pretty happy with the diagnosis and I suspect he got a lot of nerdy genetic street cred when the results came back.  Spence was also introduced to a medical student today.  I heard Hopkin give her the rundown of Ohdo and mention she'll probably never see another kid with it.  It's kind of strange, but it's kind of cool at times to have a kid with such a rare disorder.  Sometimes it's annoying and sometimes isolating, but it feels good to educate and maybe help another undiagnosed kid that may just have it and the doc can say, "I've seen this before."  The thing with the Say-Barber-Biesecker-Young-Simpson type of Ohdo, is that all of our kids look nearly identical.