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).

Supercalifragilisticexpialidocious

So, we have been watching a lot of Mary Poppins the last few weeks.  We originally kept Addy away from TV for a while (because you are supposed to) then kept her away from most toddler shows (because Yo Gabba Gabba is CREEPY).  Then we finally figured out the first kid "screen time" lesson - that if your 2-3 year-old can't sit through a 90 minute movie, TRAIN them to do this.  No joke.  In 90 minutes you fly a few states away, clean the house (enough) or just stare blankly into space.  You can even have them lay in an ICU room for a visit and stop poking the baby (as much). 

Anyway, we have moved on from Backyardigans DVDs to Tangled, to Toy story 1 and 3, Lady and the Tramp and now to "momma's movie" Mary Poppins.  I am not sure how I came to own it but if a 3 year-old is willing to give over possession of something in her house, I suppose you should just take it and be thankful, right?  Her favorite parts are when Mary Poppins sings Jane and Michael to sleep and the penguins dancing, obviously.  I'm not sure why it took me so long to figure out the extrordinary wisdom of Mary Poppins but she is just brilliant.  For example:

1) A spoonful of sugar helps the medicine go down.  Yes!  When I want to convince Addy to do something she isn't keen on or just have nothing else to offer, I usually make cookies-- I just never realized why!  Last night we made coconut oatmeal cookies with dark chocolate chips.  I used real butter.  They were amazing.
2) In every job that must be done, there is an element of fun.  I know Addy gets this one.  She can spend an hour cleaning a table as long as you give her a spray bottle of anything and her own roll of paper towels.
3) Some people can't see past the end of their own nose.  That's a easy one, just profound.
4) Why do you always complicate things that are really quite simple.  This is a good one as life relates to our Ryder - because if you boil it down:  a) he can't stay here forever b) it won't always feel this bad and c) we don't really have any control over any of this
5) My favorite - Supercalifragilisticexpialidocious.  Something to say if you have nothing to say.

Our little princess starts preschool next week - Supercalifragilisticexpialidocious...

Addy's supercalifragilisticexpialidocious grin.

"Oh...Ryder got intubated again, I'm sorry" Supercalifragilisticexpialidocious.

"We are planning to leave him intubated, sedated and not feed him until surgery, we don't know when that will be yet.  Do you have any questions?" Supercalifragilisticexpialidocious???

"Oh, I heard...how do you feel about that?"  *&$#@%^ Supercalifragilisticexpialidocious!  Actually- you could say it backwards here (dociousaliexpilisticfragicalirepus) but I guess I would have to agree with Mary Poppins in her infinite wisdom - probably going a bit too far...

 

 

Now I lay me down to sleep.

Sweet baby Ryder, what, oh what has been troubling you?  Ryder was a little fussy last week on and off - we were thinking maybe teething?  Just normal baby cranky-pants-ness?  But he has been just beside himself for the last 2 days, non-stop screaming.  The only way we could get him to stop wailing and sleep for a few minutes was with some serious bouncing.  You know, the kind where you're practically doing squats wondering why on earth "bouncy" chairs can't just live up to their name.  Bouncing is harder when you are tethered to the wall & have to move in a 4 ft radius.  It's much harder when the baby turns blue and clammy when you aren't bouncing aggressively enough.  He finally started getting doses of morphine and oxygen levels started taking longer to recover.  Then last night a fever.  Then this morning the intubation.  Again.  So far we have back a normal head CT, LP, tracheal aspirate and CSF gram stain, and are waiting for some viral studies and repeat cultures.  He's on vancomycin, meropenem, and fluconazole while we wait.  After some adjusting his sedation, he is finally getting some rest...he looks very peaceful.  I wish I could get in that crib and snuggle with him, but since sleeping anywhere but this plastic couch would surely alert the crazy police (and/or social work) his trusty sugar bear is keeping a close watch through the night.  Surgery Monday has been canceled...apparently that's just not part of the plan...but that's ok - we are just along for the ride after all...

Now I lay me down to sleep

I pray the Lord my soul to keep

Intubated for the night

To rest up for my life's next fight

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Ryder's Baptism

Saturday, August 4th - as an anonymous PICU attending put it, time for Ryder to "get all Holy"!

Saturday Ryder had a great day - he was able to temporarily disconnect from his TPN/lipids/feeds and even his milrinone (long half-life) and oxygen to take a field trip to the Community Room for his baptism.  Much of his family was there (except Uncle Cody, because plane trips half-way across the country are just a little $$) as well as a couple of his favorite nurses and some of his First Lutheran family.  He had a great time walking the halls, bright-eyed as always and was all smiles to see that he had an audience.  He is pleased with an audience of one, but an audience of 25-ish is so much better!!  He was not that happy that his adventure included what he perceived to be a cold head-washing but he quickly forgot about that when he saw that he still had everyone's attention.  He apologizes to Pastor Keith for turning a little blue when he was crying but wanted him to make sure he got to experience baptismal hypoxia! 

Ryder then had fun traveling back to the PICU conference room where he enjoyed meeting some new faces and eating some icing off Daddy's finger, which is even better than Sweetease as it turns out!!  Yum.  Addy, Blake & Kelsey liked the cake but the chocolate fountain was even more fun.  Yes, Ryder has already learned that his mommy overdoes things sometimes.  Anyway, he played all afternoon and evening with Grandma and Grandpa and then slept ALL NIGHT after such a big day!!

A very special thank you to Jake & Kirsten & thank you to everyone who was here in person and in spirit!