Look who's smiling again!!

For Ryder's fan club, sorry for the delay in updates!  Even considering all of the [relatively] small hurdles recently, overall Ryder has has a great week.  Since our last post, Ryder was on a diuretic drip for a week, and this had great results - a normal little peanut head.  He weaned down on his drips again and back up and back down, etc.  He is very sensitive to his sedatives and has had some withdrawal issues.  But he seems to be back at a happy level of happy drugs today, and that's all that matters!  He had another line infection and was restarted on antibiotics.  But now he has a clean, new picc line.  He has been off the ventilator again for a few days and so far, so good.  He is on a little enteral (gut) feeds, going very slow, and he is back to working with physical and occupational therapy.  It is actually really amazing to see how well he is doing holding his head up given all this time back in bed!  But, of course he always has been an amazing little warrior.


Mommy finally jumped on the iphone bandwagon, hence the instagram pic flurry...

 

Cuddling with mommy



Sleepy face.

And tomorrow, September 28th, will mark this little man's 7 month birthday.  Can you believe that??  Just incredible.  The big question - when oh when will this little man come home?  I asked last week if I could plan to buy him a halloween costume for trick-or-treating at HOME...the reply was that I certainly could get him a costume, but he would probably be wearing it here. 

The lesson of the day:  Many are the plans in a [mommy's] heart, but it is the Lord's purpose that prevails. - Proverbs 19:21.  At least I still get to pick out a costume for him...hmmm...it is going to be a tough choice.

And what happened then?

Friday 9/14:  "And what happened then? Well, in Whoville they say that Ryder's small head grew three sizes that day."

Yes, three sizes.  Friday was a long day...Ryder's Glenn surgery requires that the blood from his head and arms flow through the new "Glenn" surgery site then through his lungs to get back to his heart now instead of going through the heart to get pumped out to the lungs first (like in a normal circulation).  So, when the pressure is high in the lungs, or there is another BIG problem, it doesn't drain...and thus when I got here at 630 Friday I burst into tears.  He looked AWFUL.  His head was soooooo big and swollen he couldn't open his eyes and he literally looked like he got stung by a thousand bees.

And so I cried, and begged for a diuretic drip, and for somebody to do something, anything - to the resident, then to the fellow, then to the attending and then I went to work still crying.  And then I got called back to consent for Ryder to go to the cath lab because Ross was dropping Addy off at preschool.  When the cardiology team got a look at his poor giant noggin they immediately feared his surgical site had become narrowed and he was whisked away with not even enough time to get the blood thinners out of his system.  Thankfully the Glenn was still open but both of his pulmonary arteries got stents doubling their diameters to help the drainage and he came back with [so far] no bleeding problems.  My very awesome division skipped giving me any new consults on Friday - a HUGE blessing because I would never have gotten out of the hospital by the time Friday turned to Saturday.

Within 24 hrs Ryder's head went down at least a size and a half and yesterday he could open his eyes again.  He smiled - probably because his headache finally felt a little better and because he is just, well, amazing.  Addy came up to visit and held his hand and talked to him for a while - it is always hard to decide if it's amusing or just sad that she is completely unitimidated by all the monitors, tubes and wires but either way, it's a good thing for now.  Today, I am finally getting that diuretic drip I was begging for so hopefully by tomorrow our little peanut will look like a little handsome peanut again instead of a cartoon character.  He  was playing with his toys all afternoon and now is fast asleep...will be praying for a LOT of wet diapers to celebrate hospital day 201, which more importantly marks two hundred and one days with our Ryder...


Big sister.

 

Pee, little warrior, pee!!



More. Coffee. Please.

Well, if you have been following Ryder, you already knew that there was no way surgery would be THAT easy...so the little man was cruising along - until his chest tubes got pulled.  MAD as a hatter.  So he spent the labor day weekend fussy, crying, a mess.  Stopped his feeds again, various trials of benzos, pain medications, sedatives, then benadryl (maybe itchy from pain medicine?).  There was no sleep [for any of us] for a few days.  Then it turned out Ryder's drain sites were a little too open and a piece of abdominal lining snuck out.  Poor guy.  So back to the OR on the ventilator to fix him up.  He did well but then his breathing tube was too small and the air leaked around it, so he didn't do really well on the ventilator that night so the breathing tube was taken out.  He did worse with that and no sleep again on the bipap mask.  Then the tube went back in.  NOW my lovie is sleeping peacefully since yesterday morning off and on.  Starting the whole ventilator weaning thing again.  But he is still cute as a button, and loves to hold hands and pet his musical giraffe!  We will otherwise be busy with work, preschool and a first dance class in the next week but we do get Grandma Linda for a few days and owe a huge thanks to the Bidnes for organizing some special dinner deliveries for us!!