Will the little guy fly?

Ryder has had a great weekend [so far].  A fairly boring one this time, which is great here in the PICU.  Over the last couple weeks he has met a lot of unofficial ICU goals:  moved to a crib w/o the warmer - check.  Sharing a nurse w/another kiddo - check.  Moved to the back corner of the unit - check.  No more NIRS monitor - check.  Gaining enough weight his required lipid infusion had to get moved from a syringe to a bag because it was too much for the syringe (ok maybe that one's a stretch) - but check.  All things pointing to him needing less attention and being less acutely ill.  He has made some actual medical progress too- gained a little real weight, lost a little edema, and despite his last week's ICU attending moving very slowly w/his venitlator changes (which I have come to appreciate surprisingly) he has managed to get back to the point of CPAP trials (essentially doing the bipap again only with the tube still in).  He did GREAT on the trial this morning.  I got to hold him this afternoon again too - he got a bit freaked out and had to take a little versed nap after hour one, but I am determined not to be weepy or offended by this - he only knows what it's like to lay in his bed so the holding thing is very foreign.  Plus, he really likes versed, I mean, who wouldn't?

So, tomorrow may be a big day for our little warrior.  He may get extubated again.  Basically other than everyone being nervous about this he is meeting all parameters he needs to meet and we probably don't know if he will "fly" off the ventilator until the tube is out.  It's a funny expression - seeing if he will fly.  In adults it seems so much easier to predict how they will do off the ventilator - for both kids and adults you can do a multitude of vent/pressure/volume calculations - plugging values into formulas that have been shown to predict how well they will do; you can also "trial" them w/minimal support beforehand, and check blood gas #s before and after.  But the thing you miss in babies was my favorite tool...turning down the sedation and asking the person if they thought they were ready to have the tube out.  A nod, especially if the person looks annoyed, or even better - angry is a really good sign that they will in fact, "fly".  Ryder can't give us that kind of reassurance, unfortunately, though his sucking on a pacifier around the tube is at least really cute!

I think this is the first time I have ever been really afraid to see one of my babies fail.  I know this is something that parents of older children have to think about a lot - not wanting to see your child perform poorly at something -- will they get injured? embarrased? lose an opportunity for something or confidence to try again?  When you have a baby or a toddler "failures" don't normally have a place in day to day life.  Little ones don't get embarrased, they don't have regrets, they get up after falling easily and are so excited by their successes that even if you can call something a failure - it is so temporary that it doesn't get a second thought from them or from you.  Fall onto diapered bottom - they see the toy again and pull right back up to go after it.  Can't put the diaper on the baby doll - after momentary frustration and drama they go at it again until they get it right or will ask for help which is sometimes an even bigger sign of growth.  But failure to fly off the ventilator is a scary thought.  He won't remember this, but we will.  It's implications are not good either - tube back in, maybe trip to the cath lab to check pump function & pressures and see what is wrong, the "t" word (trach).  The desperate gulping for air we saw when he got the tube out the first time was probably the most horrible thing I have seen his entire hospital stay.

So will our little guy fly tomorrow?  I really hope so.  I will be spending every second until it happens hoping he doesn't fail.  We can only be at peace that Ryder is in good hands and there is a plan for our little warrior. He will breathe with that tube out when he is ready and I can't wait to hear him wailing about it!!

 

2 months old!

Updates for today:  new cultures of belly fluid still negative and doing well on antibiotics, turned down the ventilator help a little, another clot around his new line so back on the other blood thinner (seriously yuck, but we are going to ignore that little problem for now) because more importantly mommy & daddy both got to hold Ryder on his 2 month birthday for almost 3 hours of cuddle time!  Ryder still has a long way to go, but he's fought hard and has come far already since month 1...

Age 5 weeks - extubated...then reintubated
Age 6 weeks - enterococcal/coag neg staph bacteremia; central line infection
Age  6 1/2 weeks - chest drains and pacer leads removed
Age 7 weeks - moved to big boy crib!
Age 7 1/2 weeks - ascites/paracentesis, left lobe of liver infarct
Age 8 weeks - PICC thrombus #2

Keep fighting love!  I am sooooo hopeful you will come home soon!

“Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.”
Samuel Smiles

Family photo, minus Addy (napping at daycare) - hoping to get all 4 of us in one of these by month 3!!!





Seek and find

Ryder, Ryder, Ryder...

This weekend G.G. and Grandpa Jim came to visit (not to be confused with Grandma Linda and Grandma Linda's Grandpa--sorry Dad, apparently Addy has decided that Mom owns you)!  G.G. spent the morning/afternoon on Saturday sitting up here with Ryder so Mommy and Addy could go to the zoo and visit Nikita (the po-dar bear) and Daddy could work on the deck.  We have to have a nice place to hang out when Ryder comes home after all!  Yesterday he had a quiet day, still just working on fluid balance and adjusting some electrolytes in his TPN.  A follow-up ultrasound showed he still has a lot of ascites (ascites = extra fluid in the belly, probably starting from when he was so swollen early on).

Ryder on and off has been having belly concerns - he had a couple of ultrasounds that showed ascites but no other problems, though it's not really clear why he thinned out everywhere but within the belly.  He has been having poopy diapers and no belly pain, but it seemed that his little buddha belly has gotten bigger and bigger this week.  Today he had a CT scan to see if there was anything going on within his bowel.  Seek and ye shall find...not the answer to that (bowels looked fine) but there was a wedge of tissue in his liver that looked like it hadn't gotten enough blood and was breaking down.  We aren't sure why yet, but maybe a piece of his heart clot made its way down there.  This doesn't really explain the swollen belly but nonetheless, it was there.  The surgery team saw him today (worst case scenario this tissue since it isn't alive could make him sick and would need to be taken out) but they thought he didn't need any interventions for now.  It doesn't really look like an abscess but since he had the bloodstream infection, he had fluid taken off his belly with a paracentesis today (fluid removed with a needle while he was asleep) to check it for infection, etc.  He is still asleep right now but has a great-looking little belly now that the fluid was drawn off!  We will be watching the cultures of this fluid (hoping negative) and his abdominal circumferences (hoping he doesn't reaccumulate this fluid right away).  He is starting an antifungal medicine for a short time too, just in case.

It's good to have found this issue, but always disappointing to find something you weren't seeking (when it's something you don't want).  I told Ross several times this week that it would be nice to just do a therapeutic paracentesis because he should do better on ventilator weaning without so much pressure pushing up on his diaphram and because the increased abdominal girth is why his team is hesitant to bump up his feeds...so I guess I got what I was seeking--the lesson being sometimes our prayers are answered, just not exactly as we were anticipating (and sometimes not so simply).  Usually we will find, though, that what we get is much better than we even knew to ask for...right, Ryder?

We are thankful that so far this area of liver ischemia doesn't seem to be causing Ryder any distress or further complications and hoping that it stays that way!  Addy really wants to take her baby Ryder home soon!! 

"I don't know, maybe he'll be normal!"

Ryder was starting to get bored here in the PICU, you know, after he conquered sepsis and what not, so he has taken a few tours the last few days...first to get his PICC line...then to room 17A Monday.  He liked the view there but was not too excited about the prospect of a noisy roommate (he likes his prn versed naps) so he moved down to room 20 last night.  I'm sure his move to a quiet private room at the end of the hallway with its own bathroom has nothing to do with the fact that he has charmed the charge nurses with his gorgeous blue eyes or his general adorableness.  I don't know, maybe his daddy is a little bit charming too ;)

Today he is having a good day - a couple spit-ups this morning after getting his yucky vitamin; but now getting fortified breast milk for some extra calories and is off another IV medicine.  Ventilator support is still being weaned very slowly and he is doing well with that too.  Ryder took his most recent trip this morning down to MRI.  These scans are done for all the kiddos after heart surgery + ECMO.  (Originally he was going to get a CT after the intraventricular bleed he had week 2, but this was deferred since he would be getting the MRI anyway).  It turns out he does indeed have all the necessary brain parts and it looks like there won't be any issues related to that bleed (only a very small amt of resolving blood was seen in that area).  Radiology felt that there was mild volume loss - perhaps mild atrophy.  That's an awful word frankly.  The statement was also was surrounded by a lot of other jargin which in my opinion is over-used by radiologists sometimes (no offense radiologists, it does beef up the report effectively) but clinical correlation would be helpful?  That's some serious radiologist cliche!  Anyway, we all know Ryder's already a smart cookie - he tracks every movement of anyone in his room when he's awake and gives them all appropriate evil eyes when he doesn't like what they are doing.  He also loves music and already knows how to tease his nurses and RTs by twirling his little fingers around his lines and tubes.  Mild atrophy isn't uncommon after a neonate goes on ECMO, so we are not too concerned.  I liked how the attending put it "I don't know, perhaps before ECMO he would have been a genious and now he'll be normal."  Funny.  "Normal" or not, I have complete trust he was made perfectly, his life will be brimming full of hope and he will continue to be soooo loved.  No clinical correlation will be necessary, thank you!

New scenery!

Happy Monday!  Ryder had a busy weekend...he had another visit from his big sis and visits from auntie Jill and auntie Theresa - so many lovely ladies in his life, it's hard to keep track of them all :)  He spent his free time of course fighting off his bloodstream infection and his hard work has paid off - as of this morning he has negative blood cultures from Saturday and yesterday...just hoping they stay that way!!  He is also back on milk, pooping, peeing and starting some very slow ventilator weaning - standard 6 week-old activities.  Good news!

Can't believe tomorrow he will be 7 weeks old.  Such a big boy...and he was moved to a big boy crib this morning where we can now set up some toys for him to look at; he also has a projector for his ceiling...so much entertainment he is hardly going to want to leave, right?  Ryder has been in the same room in the PICU this entire stay, right across from the desk...eventually he will be scooted down the hall too to another room, always nice for a change in scenery.  Prayers that his labs look ok tomorrow AM for a new PICC line (no more horrible pokes for blood draws!) and for a strong respiratory drive so he is successful with round 2 of trying to get off of the ventilator.  Now my favorite part...pictures!


Family photo op, minus mom, plus venitlator tubing



Big boy crib...room for mommy to snuggle in there?  Perhaps...the security here is pretty tight though.

I think I can see the sibling resemblance...what do you think?

...though the ventilator and sternal incision gives away who is who :)

Increasing strength...

Ryder has been a relatively busy little warrior the last 48 hrs...his 2 chest drains and pacer wires were taken out yesterday - this went ok (he was off his anticoagulation for the day) but he still had some bleeding overnight in this area on his chest.  He was transfused blood this morning and his hemoglobin is back up to normal.  He was started back on his blood thinner so just watching for any more bleeding.  He was kept on about the same settings on the ventilator - can't really start the weaning process again until his infection is improving.  He was on some feeds temporarily but he has a little more bloating in his little belly today so those are being held temporarily just to make sure his gut is ok. 

4/12 Sleeping peacefully with sugarbear keeping his little head warm.  Look at those sweet little fingers!!

The unfortunate news today is that Ryder's blood cultures as of yesterday are still positive (growing bacteria).  TWO kinds.  Again for the medical folks: he has amp-susceptible enterococcus and coag negative staph...in ALL the cultures from 4/9 - 4/12.  Was hoping the staph was a contaminant but very worrisome that it's not...still waiting on the sensitivity patterns...Ryder now is being followed by the infectious disease team - he is on amp/gent/vanc and now rifampin as well until the rest of the culture info comes back...and probably until he clears the bacteremia.  We are worried about the foreign bodies I mentioned yesterday in and around his heart getting seeded w/bacteria so probably going to get 6 wks of antibiotics -- better safe than sorry.  His infected IVs are all now out too.  Poor little warrior, he is not making much progress on the battlefield with this new enemy.  He isn't losing too much ground though - good blood pressures and heart rate and no fever today...

4/13 bright eyed (trying to keep those jewels open with the giant monitor across his forehead)

For now, this little warrior just needs to stay strong and stay brave.  He needs to be courageous and keep fighting.  "Courage, above all things, is the first quality of a warrior" - Karl von Clausewitz

That's a lot to ask for a teeny tiny guy who has no idea what courage is...a teeny tiny guy who has been through so much already that he hasn't had enough energy left to grow even a centimeter.  But he is not alone in his battle...“He gives power to the weak, and to those who have no might He increases strength.”  Isaiah 40:29

Praying for increased strength for you baby boy...that you will fight your way through this infection and add it to your list of successful battles!  Praying that you have no more bleeding problems and that your little tummy settles down so you can get in some more calories.  Above all, praying that your perfect little heart stays strong.  It would be great to have one of those priceless first smiles by now...but gazing at those piercing blue eyes reminds me just as much how much we have to be thankful for! 

Seriously, a line infection?

If you are keeping track...Ryder turned 6 weeks old yesterday!  Just to make sure we are not losing sight of child development here ... from babycenter.com "Your baby may not be able to talk yet, but his face is sure telling you a lot. He's experimenting with different facial expressions — pursing his lips, raising his eyebrows, widening or squinting his eyes, and furrowing his brow." 

As a parent, of course, you need to keep in mind these cues when trying to figure out what your baby is telling you...because obviously, each baby's temperament is different.  So here goes:
Pursing his lips = "Mom, why did you let them stick this straw back down my throat?  In case nobody told you, this is NOT a pacifier"
Raising his eyebrows = "Umm, precedex?  What happened to the morphine, versed, ativan and methadone. This stuff is crap."
Widening or squinting his eyes = "What was that???  Oh, my ventilator alarm.  Nope, IV line pressure increasing alarm."
Furrowing his brow = "Seriously, a line infection?" 

Yep, unfortunately Ryder celebrated his 6 week birthday with a PICC-line infection.  E. faecalis for my medical buddies.  He had 1 random fever the night before that didn't recur after his warmer was turned off.  Good thing for that little fever though which prompted the blood cultures...he otherwise showed no sign something new was going on, wbc ct nml, blood pressure fine (actually he is still on nipride to keep it down).  Maybe that's why he was having trouble weaning off the ventilator?? Who knows.  Also for my medical buddies:  He was started on vanc initially, still awaiting sensitivities, gent added today for synergy.  Overall he seems to be just fine, no more fever, vitals all fine.  His art line and peripheral cultures drawn when the vanc was started were positive and new ones were sent from his lines today. 

Everyone asks if it's hard being the parent if you are also a doctor.  Mostly, no.  HLHS RAS/Norwood/EdI/ BT shunt/blah blah blah.  If I learned any of that it is filed WAY back there and Wikipedia is far more accessible.  This new problem is a tough one though!!  CVC infection = remove line pronto.  Less palatable though when your little guy has to have his upper central vasculature preserved for his future surgeries and it's just sad when you have to put in a new IV right?  So no complaints right now that his vanc is infusing via the Enterococcus-slimed PICC line.  What about length of therapy?  Hmm.  He has the following foreign bodies right now:  BT shunt, pulm artery patch, atrial thrombus, PICC, art line, shrapnel from his fetal procedure in the RV, temporary pacer wires.  Yikes.  Longer seems better, but not thinking home IV therapy is popular in pediatrics.  But that's too far in the future to get wrapped up in.  Today, just waiting for the sensitivities and new cultures.  No Infectious Disease consult yet.  Actually, our esteemed surgeon was mocking me yesterday when they decided not to order one.  He should know the world couldn't function without ID consultants to take medical histories.  It's also possible that they took into consideration the fact that we would review the treatment plan with at least a dozen ID consultants anyway :)

For now, prayers for dying bacteria, progress on the ventilator and more diuresis (yes - sometimes if you are here long enough issues repeat themselves)...staying positive though - he is NOT septic and he seems very comfortable tonguing his endotracheal tube...too comfortable...come on Ryder- it's the PEDIATRIC ICU - keep it G - rated!!!

Taking a step back...

Today we are taking a step back.

Ryder was reintubated late this morning.  No crash and burn.  No shock.  No progressive respiratory failure, however he has now been on bipap for 5 days with minimal progress except that he can now suck on his pacifier a little more aggressively that he could day 1.  Cute, admittedly.  But cute does not make you any less acidotic.  The new ICU team plan is to let him rest and grow for a couple of weeks while using the NAVA catheter with the endotracheal tube for ventilator weaning.  It would be a lie if I said the new ICU plan wasn't a little disappointing or frustrating, or that I wasn't a little sad, but if you could see his little torn up cheeks or hear his sad little weak cry in person you would definitely be on board for the re-intubation.  I know I was when we were told they would be willing to give it one more day on the bipap mask.  Sometimes you have to take 1 step back to take two steps forward.  Maybe in 2 weeks he will be on all enteral (stomach) feeds AND be strong enough to get off the ventilator.  We'll see - we don't make the plans; we just have to trust that it will work out the way it is supposed to. 

It's a good day to take a even bigger step back.

On October 3rd we were told Ryder had hypoplastic left heart.  Two weeks later with his first fetal ECHO we found out he had an intact atrial septum; making his HLHS the most lethal kind, with the worst overall outcomes.  We had to choose whether or not we wanted to keep going knowing he would have a really rough road if he made it...

If you would have asked us back then if we would choose the same way knowing we would still be sitting in the PICU at 5 weeks, 6 days...baby boy still on the ventilator, still on milrinone and TPN, still waiting...still not knowing how best to work a schedule between home and hospital, still spending at least 20 minutes a day trying to figure out if the last time you parked you left your car in red rocket or yellow submarine, still wondering why the waiting room offers the same free granola bars that it charges a dollar for in the adjacent vending machine but no splenda (seriously - SPLENDA people!!)...would we have chosen the same way?  Would it still be worth the fight?

Absolutely. 

How could you not be overwhelmingly thankful for the chance to hold this guy?  Even if it is only for a moment...

And besides, the cafeteria makes an awesome pancake.  Only 200 calories.  Is that really true?  Maybe not...but isn't this whole life about what you choose to believe?  :)

Happy Easter!

Happy Easter from Ryder in his Easter Sunday (PICU) best!

Ryder is still on bipap this evening.  The ICU team and respiratory therapists wanted to try a new nasal canula O2 delivery system that could be used with his NAVA cathter in an effort to get the mask off his face (now starting to cause some redness and a couple small abrasions).  He seemed to like it a little better overall but the blood gas just wasn't cutting it.  His pH didn't drop quite as far down this time compared to the last check with the regular high flow nasal canula but it wasn't close enough to normal to leave him on...so...back to the mask again.

His blood pressure is up a little today but the rest of his vitals and labs looked fine.  He still can't have food in the belly on the mask ventilation but he is getting enough calories in the IV nutrition to theoretically be able to gain some weight so that's good too.

While the breathing progress is still moving painfully slow, we have been blessed with some awesome nurses ...despite the mask ventilation and arterial line and pacer wires, etc. etc. the last 2 nights I got to hold Ryder for an hour each night!!!  I have no words to describe the feeling of getting to cuddle my little warrior after an entire month.  In fact, it was a month to the date Friday night when Stacy asked how long it had been...April 6th...after having his Norwood surgery March 6th.  I actually think I answered her question "A [choke, tear, sniffle, cry] month."  Pathetic, I know, but who cares.  Last night Ryder and I were so cozy in our purple recliner we both fell asleep...I must have done that with Addy a hundred times but never came close to appreciating those moments so much...God is good...

Thank you so much for all of the continued prayers!  A very Happy Easter to everyone!!

love's the greatest thing...

Oh my baby...

Ryder is still off of the invasive ventilator but remains on bipap (big mask, blows the air in for you)...his blood gas #s looked a little better this morning so it looks like he is holding his own...only question is where to go from here...can't eat while on this, can't get the arterial line out, can't back off on more drips.  We have just been waiting and hoping that he will get stronger so he can breathe without this mask smothering his little peanut face.  

Oh why...

Today the ICU team is trying something new called a NAVA catheter which triggers the breaths he is getting via electrical activity from his diaphram.  Seems like he is doing well with it.  The catheter can't stop the ventilator alarms though... these alarms could drive someone insane.  You can hear them over talking, through headphones and even while you sleep...even if you are sleeping at home.

Oh my baby, 

I love you so much.  Love that little nose, those long skinny fingers and toes, that sad weak cry.  Love always hopes.  Love never fails.  Love will get us through this.  Come on, come on, come on, get through it...Love's the greatest thing...

Oh why...?

Because, this is the plan for us little one.  You just keep breathing, and I'll keep sitting in this purple pleather chair praying your strength is enough.

http://www.youtube.com/watch?v=AArt34TNAyk

Tuckered out little guy...

Ryder was extubated this afternoon.  He didn't do so well - low oxygen, low heart rates and drop in his blood pressure.  He was placed on a high flow nasal canula (with oxygen) but his breathing didn't pick up much so he was put on CPAP (mask that pushes air in your lungs to help); he didn't do really well with that either.  He next went to BIPAP (mask that does more work for you) - by then he was so tuckered out that he went to sleep and his blood gas actually looked a lot better on this mode.

For now, no endotracheal tube but it isn't clear yet if this is the right timing for Ryder to be off the ventilator - only time (and a couple more blood gas measurements) will tell.  He is starting to wake up a little more now so we will also have to see if he cooperates and breaths along with the bipap well...

So, if you are reading this tonight, prayers that he keeps his strength up and that his little heart is protected from all the stress of his day.  He may be back on the ventilator by morning but that's ok...this may just not be his time...and this little warrior does not like to be rushed!

Slow and steady - Take 2!

Well, no extubation yet.  Ryder apparently likes to take his sweet time.  Yesterday he did 3 more breathing trials (settings turned down on the ventilator so he is doing more of the work on his own) and each time he did a little bit better.  He is less sedated now but probably still fairly weak from all he has gone through in his 5 weeks thus far.  He may also be holding out on us though - during breathing trial number 2 yesterday at about 45 min in his monitor was alarming (desats) and I looked over and he was watching ESPN.  Boys.  Figures.

So, since no extubation today (after a little bargaining with his resident Dr. this morning) they are going to work down his nipride drip and try to get him over to oral anti-hypertensives and some of his TPN (IV nutrition) is also being switched to milk...slow and steady progress!

Since no new pics of the little warrier for now (holding out for that tube to come out!) here is the little princess, who (shockingly) is so accustomed to cameras that when she sees one she reflexively throws you a VERY cheesy grin.  It's much trickier to catch her without that grin...




Until tomorrow - prayers for Ryder to stay strong and keep working on those respiratory muscles so that tube can come out soon!  

Pulling the ETT?

Sorry if you have been waiting to hear if Ryder would get extubated and off the ventilator this weekend...but...nope.  He did do much better on his weaning trials this afternoon & evening so we are hoping tomorrow is his day!!  He was still a little too sedated this morning and he's the just the kind of guy who likes to take it slow...but otherwise, he is doing well!

 

Tonight he was a little more awake but yawning - still really cute (and funny with the breathing tube in) and his busy little hands were back at work...this time on the breathing tube.  Hopefully he won't yank it out before he's ready :)