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!!

Post-op day 3

Well, I never thought I would say this 3 days after surgery #2 but so far Ryder looks AMAZING!  Seriously incredible!! We couldn't be more thankful!!!  I really don't know how the last 3 days could have been any better for this little warrior (unless of course he never needed surgery, that would be better obviously).  Yesterday he started waking up more, was off his dopamine, and got rid of a LOT of water weight from surgery...we were so happy to see he already remembered how to stick his canula back in his mouth to gum it and make his dracula face...

Ryder trying to scare his nurse away from stripping his chest tubes

Today foley out, back on feeds, oxygen even better, swelling practically gone and had a really good cuddle with mommy for the first time in a few weeks - what a big boy he is becoming - yeah almost 3rd percentile!!  He is trying to get in some rest between visits from his fan club, because of course he has a pretty big following here in the PICU - I mean really, how much cuter could a guy look covered in tubes and betadine?

Guys, you would NOT believe what they did to me this week!

We are hoping for continued progress and less pain from his chest owie this weekend before I [finally] re-join the real world Monday morning for 12 days of rounding fun @ KU! 

Back from the OR!

Ryder is back and settled in the PICU and is doing great!!!  He went to the OR this am around 8, had his old BT shunt removed, some clot cleared out and his "Glenn" connection made.  Then his pulmonary arteries were enlarged with a patch.  He was on bypass for about 2 hours and aside from a little arrhythmia early in the case he has been doing well since he came back to his room at 2ish, only on a little dopamine and milrinone (blood pressure/heart support).  Tonight he will be resting on the ventilator and tomorrow if all is well, the ICU team will try to wake him up a little and see if we can't get him off the vent!!

Thank you so much for the well wishes and prayers for our little warrior.  We are hoping for a quiet and stable night so he can get his rest...he still has a lot of catching up to do to go home but this is a HUGE step for him to be doing so well so soon after his 2nd big surgery!  Two big thumbs up for his awesome CV surgeon and ICU team!!

Look how handsome!!



Cath today, surgery tomorrow...

Ryder had a busy morning - we found out late Friday that as a result of his afternoon ECHO, he would need another heart cath before surgery - he has had a difference in his upper and lower extremity blood pressures but the ECHO too looked like there was a gradient difference and it was thought this represented a coarctation - narrowing- of the aorta in the area of some scarring from his first surgery.  So, he rested this weekend and went back to the cath lab this morning where he had this narrowing dilated with a balloon.  It went well, the only disappointing news was that his right pulmonary artery barely has any blood flow to it so this will require some patching, etc. which will make his surgery tomorrow a little more complicated/risky.  Ryder's surgeon is confident, though that his pulmonary pressures look great in preparation to sew his superior vena cava (big vein that brings blood from top half of body back to heart) directly to the lung via the pulmonary vessels...this is the "Glenn" surgery (picture below).  It will take away half of the work his little heart has to do so if all goes well will make him much more stable overall and able to better tolerate feeds, exercise, etc. though he will still do it all with low oxygen levels.

So, tomorrow is a very big day for our little guy.  I will echo (pun intended) everything I said before his first big heart surgery - in short, despite the ups and downs this little warrior has taken us on for the last, yes, SIX months he is nothing short of amazing.  Absolutely amazing.  In the short time he has been in our lives he has taught us countless lessons and he is the most perfect gift we could ever have received.  Please pray for Ryder tomorrow morning on his 6th month birthday as we have to let go of his hand once again and have faith that the Healer of hearts will be guiding the hands of those mending this little heart...

What could be a better day for surgery?

Well, it has been a week.  Ryder has been busy...he is nearly off his milrinone as it appears the ventilator took a lot of stress off of his heart, he is back on a lot of enteral (oral) medications instead of IV, he finished antibiotics (again) and he is now doing pretty well on feeds into his little gut too.  He's been asleep for much of this but we have seen a few smiles and he wakes up and grabs at his toys (and his breathing tube) for a little while each day...though most of his time is spent looking a bit like this...

and doing a little bit of this...

His big sister has been busy too.  Between the zoo, nature center, park(s), bike riding, book store, swimming, etc. she can hardly find time to get baby bitty down for her nap.  She started preschool today and had a great morning.  They have just a couple hours a day the first week and move to half day next Monday.  She was very happy to announce to her teacher that she brought an extra change of clothes "just in case I potty in my pants."  Very practical this girl! 

And so the next surgery - rescheduled for Ryder's 6 month birthday, August 28th.  So now we wait, with hope...and patience (I mean after an EPIC fail on my part trying to get 14 people to give us a surgery date all day Friday , then paging the palliative care doctor Friday evening to get someone to give me a date, then complaining to anyone who would listen all weekend that we didn't know the date for sure then trying convince the surgeon today to do the surgery before next Tuesday - NOW with patience).