Sweet Home Ithaca

Skynyrd was way off...its Sweet Home Ithaca! Kellyn rocked through the weekend sweetly with some discomfort but all in all solid. She had her follow up appointment this afternoon and staff was very please how she looked, how her incision was healing, etc. So much so that they dialed back her meds (just a diaretic), had her go for one more chest x-ray to confirm how things looked, and sent us on our way (due back up to see the cardiologist on October 18th). So we picked up Evie who was with her Grandparents (thanks Mom and Dad!) and busted back down to Ithaca on a rainy fall day.

The girls slept the whole way back and everyone felt good rolling back home. Shared a few dances and a hearty dinner and retired for an early sleep.

It will be easy to pick me out around town. I'm the guy with a wild the extra skip in my step, huge smile on my face, and full heart. No two ways about it. I'm the happiest, most fortunate guy in the world. Three lovely, healthy ladies at my side.

Recovery at home begins now.

Flight of the Mighty Warrior

It was a ninety degree September day, massive winds were blowing the early fall foliage to the ground. It's a day I will not soon forget. The day Kellyn was discharged from her heart surgery.

Much to my surprise Kellyn's surgeon, Dr. Alfieris, directed the team to pull Kellyn's chest tube and initiate discharge. We questioned this because what seemed to be higher than ideal outputs still. They indicated that since it had been in for nine days and the volume was leveling out - it was wise to take it out. I had to take direction from the good doctor whom we have taken several leaps of faith with and I have literally entrusted the lives of my daughters to.

So chest tube pulled (another really enjoyable event) and we rolled down to have a sedated echo (yet another enjoyable event). I had to hum the Oregon fight song, Mighty Oregon, over and over again just to keep myself sane as she drifted off. They then brought her in for her echo where she laid on a little twin bed as a nurse monitored her vitals and the tech performed the echo. I took the opportunity to jump up on the bed with my little passed out gal and held her limp hand.

We then proceeded back up to the room for her wake up and discharge. She was in tremendous spirits - chest tube out, rebuilt heart, ready to go home.

This weekend will be very, very important to ensure her body heals well and does not accumulate too much fluid. She will apparently be very irritable in a day or two if this occurs. I pray that this discomfort will not come and that we get to the follow up appointment Monday afternoon without complication. For now we are resting at Ruth's mothers house reuniting Kellyn with sweet Evie and enjoying the day.

It was so exhilirating to walk out the door with her and into the balmy, windy day. I can not adequately describe how difficult, intense, and yet amazing this experience is. There is no way you go through something like this as an individual, parent, family member or friend and come out unchanged. Its an experience that cuts you too the core, but exposes great brillance.

Now starts the stressful, yet wonderful steps of recovery. Many, many difficult days to come, but great ones none the less.



Thank you, thank you, thank you.

Post Op: Day 8

Day began beautifully list ening to the hopeful tunes of Michael Franti and Spearhead's latest "The Sound of Sunshine" that my man "Banjo" Dan Doyle dropped off for use last night. Seemed especially poignant for a day of sun and drying up the chest tube. Apparently Michael wrote the bulk of the album while in the hospital dealing with a scare last year. There are lots of great tunes including 'Hey Hey Hey' with lyrics "No matter how life is today, there's only one thing I got to say, I won't let another moment slip away, I hold on, I try to hold on." Also there is a beautiful tune 'Gloria' that feels like it will be Kellyn/Dad's song.

We were given a goal chest tube level of 30cc's by midnight - if she hit that we would move forward with discharge logistics. We would maybe in consideration at about 35, but with a level of 42 with a few hours to go, I think we are destined for a few more days as Kelly's heart continues to heal. Again this just occurs with some kids that it takes longer to heal. They assure us she'll get there, just will take more time. Aside from this wrestling with the chest tube, she is in tremendous spirit and is looking great. Parenting your 3 month old with a chest tube in is about as fun as cutting knee high grass with a push mower, at 5PM in August, with a three piece wool suit on.

Ruth and I, well this picture was taken of us at about 4PM.



We are a bit beat up, are really punchy, squirrely in the hospital and dying to get our girl home. Feels like we are a few days out still. Staff here has been great, especially the nurses. Our sweet nurse Gina has even taken to joining our family dances to help Kellyn take her meds.

Weekend brings a chance to see sweet Evie - and we are both jazzed about that. Our saga continues, check in with me in about 15 years - something tells me Kellyn will be the one we are waiting for as we head out the door...that is quite alright with me though...as long as it takes. Coming home will never have felt so good.

Post Op: Day 7

Kind of a drag of a day inside of Strong today. Kellyn's chest tube drainage is trending up toward 40cc - up from yesterday - which is moving in the wrong direction. There is still hope - and I believe it - that the number will come down in the approaching days. This uptick means we will not be discharged tomorrow for sure - the goal is Friday.

Apparently everybody and everykid is different with this issue. Evie had already been discharged at this point (total of six days in hospital). Kelly's body is just taking her time. My gut and heart tell me she is progressing, and we will be out by the weekend.

Ruthie and I are stir crazy and spent. We get some relief with sleep shifts at the Ronald McDonald House but the time here is growing old - especially trying to keep Kellyn engaged and active while negotiating the uncomfortable chest tube. Its a delicate balance between wanting to make sure things are wrapped as they need to be and also trying to get her out of the hospital before picking up something that will further complicate things.



So tomorrow - think desert - desert dry for the my little girl to help punch her ticket out. Certainly, I owe the world to the good people at Strong Hospital a couple of times over, but it would be nice to firmly close the book on this chapter.

THINK DESERT!

Post Op: Day 6

Today sweet Kellyn excelled. Much more of her old self even while fighting off the discomfort of her chest tube. The most exciting development was what appears to be a substantial reduction in her fluid draining from her chest tube. What was at a level of about 300 on Saturday dropped to 80 on Sunday. Then back up to 120 yesterday. Today she is on pace of about 30 - much closer to an acceptible level. Should this stabilize at a low level they will confirm that fluid is not building up in the chest cavity with a chest x-ray and if it looks good the tube is pulled. The final step is having an echo to check heart function and she can be discharged. Staff estimates that if these things fall in line we could be out of the hospital by the weekend.

The outstanding piece with all this is the level of concern with the build up of chyle I mentioned in an previous post is signficantly reduced. All in all - really great day.



Spent a lot of the day interacting with Kellyn. This included reading books and lots of walks in the stroller (including a sweet trip to the outdoor playdeck for some sun).

Observation of the day on hospital happenings - what is with the level of interest from patients on Court TV - you know the ones with the celebrity judges. Seems like every patient room, waiting room or lounge has folks watching one of these shows? I don't get it. I really don't.

We won today - now we are resting up to wrestle tomorrow to the ground!

Post Op: Strong Day 5

6th day in the hospital, 5th day post op, feels like we've been here for a month. All in all it was quite a positive, strong day. Kellyn had a decent night and awoke rather happy. She greeted the staff with smiles and a few laughs. She is the type of gal whose eyes smile first so when you see that coming you know you are in good shape - and I see that coming.

The assessment for today found all of her vital signs in really good shape. So much so they took her off of the IV drip as well as the oxymeter (the key indicator of how much oxygen her body is receiving). The key remaining piece is the chest tube. Levels still have a ways to come down until she's discharged, though with IVs out it seems to be trending in that direction. The sense is that she likely has some chyle draining out, though the feeling is to have her continue breastfeeding and see how she responds. She seemed to respond positively. Now lets keep reducing that level!

Chest xrays look pretty positive and clear. I brought her down with her nurse for the xray this morning which is always enjoyable. To get a good chest xray on babies they place them in this unit which looks like a torture device. It has a small bike seat and plexiglass that surrounds their body and holds their arms above their body. Evie went in this thing at 5 weeks and it crushed me how rough it was to see her crying. Kellyn cried pretty good in it in pre-op, though today she just sat in it hanging out - the techs were floored - rarely ever see that type of reaction.

Got a chance to roll outside the room with her today as she had even fewer lines rigged up to her - we took her out in a stroller along the floor checking out the scene.

As I sit and write this Kell is settling into sleep in her crib. Her Cuban tech tonight just gave her a bath. I was all for it, though half way into it I realized this style of bath was not the type of soothing one I envisioned. Little bit more agrresive. It almost sent Ruth and I down to the first floor ER.

Things are trending upward - just awaiting Kellyn's body to finish adapting to all its been through this last week. I remain committed to waiting and doing whatever she needs, though man alive are we beat!



Where in the world is Evie? - My sweet big girl has been back in Ithaca starting Pre-K at our local elementary school thanks to assistance from recently retired super Grandma Doyle. Thank you so much Mom - it has been fantastic to have you there. She rolled up to Rochester this weekend and we got brief visits with her. She got to spend more time with her cousins, Aunts and Nona which sounded outstanding. Thanks so much for keeping her engaged. She is sorely missing in our small family meetings in the hospital.

Post Op: Days 3 and 4 - Complications

Post Op Day 3 brought some of the hell that relates to pediatric post-cardiac surgery. The day began decently, but took a significant turn downward when physicians alluded to the potential that Kellyn has a surgical complication known as chyle. It basically manifests itself and a great deal of chest tube discharge because surgery lymphatic tissue that processes fats is damaged and can't process those fats, so fluid builds up in the thoracic cavity (my medical spelling is rough - probably the reason I didn't go to med school - that and a few other reasons). Treatment for this condition is a signifcantly reduced fat diet - tricky for a 3 month old who is soley breastfed. This can extend the hospital stay by a number of weeks! The good news is that as of this morning (Day 4 post op) that drainage went considerably down - though we are in a wait and see at this point. Please, please send your good thoughts for this aspect especially.

The other real special gem occurred a 4AM this morning when it was realized that the IV in her groin where fluids were being administered infiltrated her body, meaning it pierced or moved out of the artery and fluid filled up in her side and groin, SO I had the job of holding my little girls hands and looking her in her eyes as she wailed when they removed the sutured IV and find (after several attempts) a spot for a new IV on her arm (please they did not have to move to the head). Apparantly sweet Kelly's heft does not bode well for placing IVs and drawing blood. The swelling from the liquid is due to go down over the next day or so.

On the positive side - conversations with cardiologists and surgeons were really positive today and she is resting and eating well and just seems much more like her happy self. Here's to that continuing - and working well!

As we sit at her bedside one of books that I pick up periodically is my Green Bible. I admittedly was a bit discouraged and beat up from the evening. I just have been working through some of the Gospels as meditation and will stop perodically, place the book mark and roll on. I open it this morning to where I left off, Mark 5.21, the parable about the leader of the synagogue who asks Jesus to come and visit his very ill daughter. Everyone makes fun of the man for wasting Jesus' time. His remark to him was "Do not fear, just believe." His daughter went on to rise up from her sick bed and walk around. Divine intervention - surely needed that at that moment, even seemed my girl started feeling better after that.

We miss Evie and our home in Ithaca terribly, and really, really want sweet Kellyn to progress in a positive direction. Please think of my little lady, especially in the next 24 hours that this will occur.

Do not fear, just believe.

Post-Op: Day 2

Things are moving - perhaps a bit too fast. Kellyn had another remarkable day recovering in the PICU. Added lines including her carotid line (neck) and arterial (wrist) were removed. She also was taken off of oxygen and has been breathing well on her own. She is shifting to taking meds orally which has been tricky. Ruthie also had the opportunity to feed her yesterday and she did quite well.

Due to a full PICU and the fact that she was doing so well she has been moved out of the PICU and into a post-cardiac pediatric wing. She's been able to rest and sleep in our arms - at moments a very peaceful night - its really been wonderful to see her sleep in our arms. Her oxygen levels continue to remain strong, though she is emptying a significant amount of fluid from her chest tube and this remains the most significant remaining concern. Prior to being discharged she needs to decrease this drainage and of course not have drainage build up in her thoracic cavity.

Continued to be floored by how great the vast majoirty of the nursing staff is. Very compotent and caring. I'm struck by what a noble, intense profession this is. They certainly don't get the credit they deserve for the "front line" work. Having said that, being embedded in the workplace of others is very interesting and difficult. I find it difficult to tolerate some of the personal conversation - albeit with a minority of the staff.

Also, can't say enough about the great staff, volunteers and space of the Ronald McDonald House. We've had the good fortune to spend portions of the last several nights in the house within the hospital - one floor up from the PICU - its been really helpful and outstanding.

Thanks again for the well wishes, food and prayers. It means the world.

Post-Op: Day 1

Sweet Kellyn Rose continues to progress well. Day one of Post-Op found us singing her unofficial theme song to John Denver's Country Roads - "Kellyn Rose take me home to the place I belong..." on continuous loop (for the record this is the only half way decent John Denver tune). Singing seemed to pay off as she cleared the critical first 12-hours post coming of the heart lung machine.

The day began with her connected to a number of things including:

-Ventilator
-Catheder
-Chest tube
-Central IV line
-Arterial line
-Line in groin.
-EKG leads
-Pacemaker leads

As of about midday she was extibated from the critical ventilator and was breathing with just a small amount of oxygen through a nose canula. She also has had the catheder removed. The idea is that over time she will shed more and more of these - when they are all gone she can go home. She's started whimpering a decent amount and has opened her eyes a bit. Her medications have been gradually dialed back and are one by one removed. The idea is to keep her comfortable as her heartrate comes down and she gets more comfortable.

Ruthie had the sweet opportunity to hold her for a bit which while akward with all the leads, was quite sweet. She continues to progress well and the staff is quite impressed with her.

Its been pretty wild in the PICU with a pretty full unit, tight nurse staffing and some pretty rough cases so we have spent a lot of time bedside advocating for the girl and holding her hand. At this point we ask that no one visit because of this.

Thanks so very much for the messages and tremendous support. Its been intense and incredibly meaningful.

Win the day!

Day of the Mighty Warrior

September 15 - day of the mighty warrior Kellyn Rose. There is really no way to prepare for handing your child over for open heart surgery - even if you've been through it before. But we did and she has thrived.

The solid team lead by our old friend Dr. Alfieris hit another homerun in our book. After waiting the four hours of surgery, the good doc came in praising how great she had done. He was also was floored for what a severe case of Tetralogy she had while remaining asymtematic.

She is of course now knee deep in a lengthy recovery, is receiving a great deal of medication and is on a breathing tube, though she is doing quite well according to the staff - heart beat is good, clear and oxygen levels at 100% (far cry from the 80%she was exhibiting prior to surgery). Ruth and I are very proud and exhausted.

September 15 is in a direct tie with October 11, 2006 (Evie's surgical date) as the worst and best days of my life. Thank you to all who have thought and prayed for our family. Now the warrior directs recovery...

The Week of the Mighty Warrior Woman

Every once in awhile you meet someone that you know you could go to battle with. They have 'it'. You know they can hold their own and also inspire a strength in you that you know you have, but don't always know how to exert. Its not what they say - just the opposite - its what they don't say, what they do. Kellyn has it - you can see it in her eyes, feel it in her presence. She is a warrior.

As we prepare this week for one of the great battles of our young family's life - I take comfort in knowing what I know of Kellyn, the mighty warrior woman. She is strong and brings out the best in me. We may carry her a bit, though I'm confident she'll carry us much more.

I'd like to think she gets a lot of that from me, though the reality is I think she gets it from the girl who sleeps in the bedroom next door.

Reset for Next Wed. 9/15

Got the call Friday indicating that Kellyn's surgery has been reset for Wed. September 15th - with pre-op this Tuesday afternoon. Feels good to get a date back and set. Breathe deep and regroup.

Having the week delay allowed us to celebrate sweet Evie's birthday and get her organized for Pre-K. All the girls are looking good and feeling sweet. Thanks for all the well wishes.

Bumped

As we were coming to terms with the September 9th surgery - and looking forward to the opportunity to begin recovery - we were informed that Kellyn's surgery was postponed to a date uncertain. They cited the need for an emergency surgery for a young person out of Buffalo as well as issues with children in ICU who are not progressing well out of the hospital. We were initially very disappointed to hear this information, though have come to terms with it.It certainly makes Evie's birthday and ramp up to school next week a bit easier. We are hopeful that schedules permit for the surgery in the approaching weeks.

K is doing really well as of today. Chubby and very sweet, laughing, even throwing out a giggle recently. A great little lady - beautiful and bound for greatness.

Offering a bit of perspective on waiting for you child's heart surgery just look overseas - http://english.aljazeera.net/focus/2010/08/201082810429993152.html - we are blessed in so many different ways.