Wednesday, July 30, 2014

Lots taken out!

Miles had his ventilator taken out,  NIRS (forehead thing), catheter, and he got off his epinephrine!

He did well being taken off the ventilator.  Poor guy sounds like a kitten.  He has a sore throat,  little swollen,  and it'll take some time to get his vocal chords back to normal.  He is on a wee bit of oxygen which is normal through his nose.

OT just stopped by for his first visit.  Got him doing a little tracking and sat him up for awhile.  He did pretty well,  considering he's doped up on some morphine.

Here's a pic without as much junk on his face. 

Ventilator coming out soon!

Last night my mom and sister visited, and my mom said "You must be really tired, you have spelling errors in your posts!" Um, yes to both.  Monday we were running on adrenaline, the last two days we've been able to sleep, just not ever get caught up and feel uber refreshed.

Miles is on very mild sedation but they're slowly taking him off that more and more. He's had many practice runs off his ventilator and has passed with flying colors, so after rounds this morning, the RT is coming to take it out. I hear they want him very awake, and very pissed...(weird, but that's how they knew he's awake and alert and ready). It hurts being taken out, and makes for a real sore throat after.  But, he'll be happy to get it out. HE HATES IT. He does have periods of semi wakeful ness, responds to our touch and voices, and shows pain and discomfort by grimacing.  However, that's probably just not pain and discomfort from the ventilator, it's also extreme gas that has built up in his guts from the ventilator and chest drainage tubes.  I probably won't be in the room when they take the ventilator out, Ryan said he will though.

He also has pacer wires still in, which are attached to his heart. He isn't on any external pacemaking machine anymore, which is great, but the wires are there just in case.  When those come out (probably late today or tomorrow) they literally yank, FAST. An MD does it. Also, his chest tubes will also be taken out, and I think it's those or the pacemaker wires that have sutures inside that after they pull them out, they internally suture a little.  Older kids have said that those chest tubes hurt worse than the incision site.

We haven't seen his incision site, but we learned it's glued together. Yep, glued. No Elmer's here, but some skin glue.  Inside he has some metal wiring closing his sternum, and a few layers of internal sutures. I thought for sure we'd see a Frankenstein, stapled wound. Guess it won't be the case. 

Yesterday Nora and I went to Brueggers across the street for a quick lunch. (She works across the street from Amplatz) Ryan was at work, and Miles was still pretty out of it so it was a good time to go. And it was nice to feel the sunshine!  Later, my mom and sister drove up for the afternoon to see us.  Grammy had tears, but got it together real quick and promptly began asking the nurse questions and telling her what Miles needed or should have. "I think he'a cold. I think he's in pain, etc." Ha, I'm guessing that's pretty typical of grandparents.  They didn't mind though.  Nora and Mike brought back a big meal for us to eat last night.  The food here is not so great, typical hospital food. Over priced, not very good.  Parents don't get to eat for free, even nursing mothers. That totally baffled me.  I'm sure insurance is paying for all room and board, and food is included in that. I mean, Miles totally needs french toast, oatmeal, and chocolate milk for breakfast. :)

The ventilator come out soon, the yellow ng feeding tube has just been to get a wee bit of breastmilk in him. They stopped feeding 4 hours ago, because they don't want him puking when the ventilator comes out.  We'll bottle feed this afternoon! The thing on his head is some sort of thing that meausures brain activity. That comes off today too.  Late tonight or early tomorrow, the line in his groin will come out too. Slowly but surely, the tubes are coming off.

Ryan decorated Miles' door. Other kids had stuff on their doors, Ryan thought he should too. And he thought it was a good idea to let people see what he looks like without all the wires. Most of the kids with decorated doors are kids who have been in the PICU a very long time. Guessing most are transplant kids.

Ryan working from the hospital room for a little bit this morning, awaiting the ventilator removal.

Tuesday, July 29, 2014

Picu room tour

Picu room tour:

This is a link that shows what our PICU room looks like.  Bathroom is a little hidden.  Very good size,  Miles and his machines take up 2/3 of it.  When we move floors we'll have a full pull out couch, table,  microwave,  fridge. .. and it'll be much bigger.  It'll be nice to shower in the room. 

The music playing is on a little touch screen tv. It's attached to the beds,  and kids can choose music,  movies,  tv, games I think,  and even control lights for the room. 

There's an air purifier outside his room in the hall,  and all water that comes out of the faucets is purified.  Pretty amazing here.

Post Surgery Day 1

It's almost 24 hours exactly since they started the incision to do surgery.  (Getting his body prepped and all the lines in takes a long time)  He has a line going in his neck that gives him all of his medicines, and an arterial line in his groin that monitors blood pressure. And it works well for doing blood draws, which they do every few hours. He has two tubes coming out of his abdomen to get fluid out of his chest, the ventilator still on, and he has a few small pacemaker wires that are in him Those are hooked to a "pacer" which essentially is like an external pace maker that helps his heart keep pace and rhythm. It's mostly on back up mode, but they like to use it so his heart doesn't have to work too hard on it's own. 

There's a meeting today when they do PICU rounds, he'll be first up. They'll discuss his plan for the day.  Our best guess is that before they take the ventilator out, they have to start weening him from other things to see how he tolerates everything.  They need to have an extended amount of time where he isn't so sedated and on certain meds so they can see how he does. After he proves (while awake..eek!) that he is ready, they'll take it out.  That will be the toughest part. He'll be awake, looking around, but will have that tightly taped to his face. His lips are puckered like a fish because it keeps the tubes in securely and the tubes don't bounch around inside or outisde of him.  (That hurts.)  Another guess, is that he'll be off the machine tomorrow if possible.

He's on lots of pain meds and hasn't grimmaced too much.  He actually is probably on more than typical babies his age because statistically, kids with DS require more pain meds as their body usually seems to flush through it quicker. 

Ryan went to work this morning. I told him he should work while Miles is mostly sedated. No sense two of us sitting here. Plus, Miles will have lots of appointments and/or be sick the rest of the year, and I'll need him to be home, especially in September.  When he gets moved to the regular floor, we won't have as much nursing care, so we'll be doing alot more of the work. (feeding, entertaining, etc.)

I'm off soon to an Infant CPR/first aid course.  Lovely, huh?  I was certified awhile ago, but they want cardiac parents completely refreshed and ready to use it if needed at home.  Guessing that's mostly for the few weeks following surgery.  I'll be with other parents as well.

I ran quick to Starbucks this morning across the street. Hadn't seen or felt the sunlight since Sunday afternoon.  Figured I should go while he was still mildly sedated.

Monday, July 28, 2014


Ryan went to a friend's house who lives nearby,  because until we're in a regular room,  it's just too tight for two people. 

Miles is still lightly sedated,  he's opened his eyes a bit and can hear us,  he's just sleepy.

After two hours of sleep last night,  I've got in two hours now and feel ahead of the game! Our current nurse took an extra 4 hour long shift because they're short staffed so she'll be done at midnight.  Everyone keeps telling us to sleep because we have the most expensive babysitter we'll ever have. I get it,  but easier said than done, especially when I pump every 3 hours. 

Lots of kids in the PICU, some I can tell have been here a LONG time.  That's tough to see.  Everyone does the peek as they walk by,  but not necessarily to be nosy I think,  but to kind of show sympathy and empathy.

They continue to mess with his meds,  tubes,  etc.  Such a balancing game.

Going to eavesdrop on the nurse change over and going to bed.  Enjoying having a  one on one nurse.


We're in our PICU room now and got to see him.  Our lead nurse is still doing lots of charting and work for now,  but we'll have a discussion soon about everything we see and what's going on.

There's two family lounges here in icu,  one that has 2 showers. Decent sized room,  but there are soooooo many machines we're cramped to a small back part.  There's a large bathroom,  but no shower.  When we get to the regular floor we'll have one in our room.

Lots of wires, machines,  tubes,  you name it.  He's on lots of meds.  He'll actually start to wake soon,  but they'll keep him very mildly sedated while he has his ventilator in.

Big windows. Two different shade options
Um.... our beds for the evening
These are all of his meds he's on. 

In recovery

Miles is in the picu now and we're in the lounge waiting to see him. We saw a glimpse  of his room walking by and there's an army of people there.  Overall surgery went pretty well. The main valve they worked on still has a mild to moderate leak,  but we knew that was likely going to happen due to the nature of defect (size,  location,  etc. ) He can live with that leak without many side effects for awhile. Surgeon thought that if more  repair or replacement was needed,  it'd be in his 20s.  We're hoping meds will only be temporary for the few weeks after surgey (help the heart work and help heal it).

The good news,  as of now,  there isn't a need for a pacemaker.  But the small wires are set in place and ready if he needs it.  The next few days will determine that.

9:30 AM update

Ryan and I both wheeled Miles down the hall and kissed him goodbye at the "kissing corner" where parents say goodbye to their kids.  It was tough, but I think it's been comforting knowing that this HAS to be done in order for him to live, and we're just ready for it to be over.

So far we've gotten two phone calls since 7am. The first one was that all "lines were in" and they were starting the operation.  The main lines are going through his neck and groin, and those are the big ones that regulate just about EVERYTHING for him.  Then of course they have regular IV's too.  That process took about an hour, which is typical. It also can be challenging on people with Trisomy 21 to get all those lines in.  Especially the neck one, as his is shorter.

About a half hour ago we got word that he was "on heart and lung bypass." That meant, a machine is keeping the rest of his body alive (organs, brain, etc.) while they have the heart stopped and are working on it.

Someone from the actual OR calls on a phone and we talk to them.

The surgeon estimated about 5.5 hours for surgery, not including the time it takes to get him in his NICU room and transfered care teams.

The anesthesiologist told us all the risks, which we knew, but did state that since his heart is being operated on, he has a 10-20 times higher risk of having complications from anesthesia than other children. BUT, he did say, the risk is so minimal for the other surgery candidates, that 10-20 times higher isn't quite that bad.  Eh, it still seems bad.

Miles essentially has one valve that should tbe two, so they are cutting that and repairing it.  But because of where the surgery is taking place, it'll affect the current or electricity (ok..not the right terms there, but Ryan and I are spacing out..and sleep deprived.)  of how the heart and it's rhythms work. So..there is a chance, that after a few days, his heart doesn't get the right rhythms back and will need a pacemaker.  The other risk is that the valve reconstruction isn't strong enough, or "good enough" and he'll need a complete valve replacement.

He'll be sedated anywhere from 24-48 hours depending on how he's doing.  They'll take the breathing tube out first, which I'm glad he'll still be quite sleepy and drugged up for. I don't think that's pleasant.  He'll be on strong pain meds, thank the Lord.

We'll post pictures later, as there are lots of people who would like to visit if they could.  Couple more hours to go.....

Here are a few pictures of our surgical waiting area. We've set up camp to say the least.

A very small section of the waiting area that we've taken over. 

They have phone charging stations, multiple tvs, coffee/tea, computers, and blankets and pillows for families. 

Preop Room

We're all starving,  but Miles is in the best spirits.  Ryan's rocking the poor hungry boy!  Waiting for surgeon and anesthesiologist to come do their talks,  then he's off.  Ryan is walking with him. .. didn't think I could keep it together. Here are a few fun,  happy pics.

Sunday, July 27, 2014

And it's here. ....

Ryan and I were just talking about how we can't believe the day is here.  We've been waiting/fretting this day since the day Miles was born.  March 3rd we were hit with the surprise of his diagnosis AND the news that he had a major congenital  heart defect (s). What is supposed to be one of the best days of your life turned to the most heartbreaking one ever.  That story will be told one day.

We've watched Miles' heart beat so hard and fast,  and physically felt his heart struggle and pound against ours for almost 5 months.  We were fortunate that he didn't go into heart failure sooner. . It was expected at 4-5 weeks.  Our superhero made it to 4 months.

We have lots of mixed emotions. . Mostly that we're glad to get it over with, even though there's a strong chance of needing more work done or a pacemaker. We felt like we accepted God's miracle and challenge of raising this special boy, who also happened to have a broken heart.  Now we pray that God is able to fix his heart.  He's helped quite a bit with mending ours.

Tonight I cut his nails (they grow like weeds! ), picked him up by his armpits lots,  did lots of tummy time, bathed and scrubbed him with antibacterial surgical soap,  and got him in his jammies. We took one last picture of his flawless chest.  I also got a picture of a major peeing episode on Ryan before bath.  :)

Thanks to those of you who have helped us,  are currently helping us,  and those that are praying for us. 

I'm off to enjoy a shower where I don't have to wear sandals.  Pretty  sure we're not going to sleep much. .. finishing up loose ends around the house and leaving at 4:45 in the morning.

PS... Dr. MacIver had better be sleeping soundly and getting his rest. 

We won't be posting many updates on Facebook,  but will mostly on here.  Either become a follower or check back often for updates if you'd like.

Thursday, July 24, 2014

PreOp Appointment

See these two dudes below? (Dr. MacIver left, Dr. St. Louis, right) Pray for them. Pray that they have skilled hands and a relaxing weekend and show up to work Monday morning bright eyed and bushy tailed. They will be working on Miles.  We initially just thought it would be Dr. St. Louis, the more "senior surgeon," but as it turns out, it'll mainly be MacIver, likely along side St. Louis. AND an army of surgical residents and med students I'm sure. (And lots of other people who probably do even more grunt work for the doctors.) Sucks thinking residents will be probably doing some work on him, but as Ryan says, "they have to learn too." (LOTS of doctors in our circle of friends, so they'd totally roll their eyes at me!) But that's what happens at a University Hospital: lots of research, innovation, and practice.  We didn't end up getting to meet any of these guys today, they were busy. (Imagine that!) So we'll meet one of them the morning of.  I wanted to bring them an aroma therapy candle and tell them to not whoop it up this weekend. No keg stands, bar crawls, etc. Steady hands boys, steady hands.

Robroy MacIver, MD, MPH        James St. Louis, MD

Our preop started with the usual height, weight, blood pressure, EKG, and echocardiogram, and chest xrays. Then we met with a nurse practitioner who went over the procedure.  Yikes. Disgusting. Horrifying. Unbelievable that they're going to do ALL that on a 12 pound kid with a heart the size of his little fist.  I stopped creating mental images at "breaking the sternum, bypass complications (stroke?!), potential animal parts to help with repair (weird.),  and using permanent wire to close the sternum area inside back up. (No, he shouldn't set the alarms off at the airport!) She said surgery times can vary obviously, but hopefully would be in ICU by late afternoon. The first part of the surgery that takes awhile is getting all of his body scrubbed and getting tubes in all over. He'll be sedated for that though obviously.

No more gory details, but it's nuts.  Now I know why some people say these surgeons have "God Complexes" because they are doing God's intricate work to say the least.  And save lives. And are good at it. And get paid lots of money.  And probably have hot girlfriends or wives. And drive fancy cars.  (Okay, maybe not the last two, but I'm going to guess at least one of them for sure.)

Miles will be sedated for 24-48 hours post surgery, then the ventilator comes out.  Then we wait and see how he does.  NICU for anywhere from 4-5 days, then regular peds cardiac floor. Best case scenario he goes home at 10 days, or 2 weeks or more depending on complications. We won't talk complications, because there are too many, most are terrible, and I can't even think about that.  (Did I mention we have to re-do infant CPR training before we leave the hospital?..which reminds me, Grandma and Grandpa Winkler are helping with some after care in the following weeks..probably ought to have them watch some you tube videos.)

Then we met with a child life specialist. They're jobs are so amazing, I considered training to become one when I couldn't find my first teaching job.  If you don't know what one is, google it, it's pretty cool.  But for now, she asked us what we had questions about, showed us pictures on an ipad of real post-op cardiac patients, what the OR will look like, machines, tubes, you name it. I'll post some pics of Miles, his room, the hospital, etc. next week. It's a pretty amazing facility.  Nolan will come the second week to visit, he'll love it. The child life specialist will talk to him, show him some things, and he'll play on the playground, playrooms, etc.  

Playground outside only for patients and families. Today I saw an adolescent patient outside, with his IV's, doing therapy stair work.

The outfit was very fitting for our day.  He did great.

Sunday night will be a night of many lasts for awhile.  A good, fully submerged bath (he LOVES his baths), nail cutting, picking up by the arm pits (can't do that for weeks stretching the sternum), and a picture of his tiny little incision/scar free chest.  His bath Sunday night will involve a strong, really drying, antiseptic wash to help prevent infection the next day.  Then he gets into jammies, has his final meal before 3am, and check in at 5:30am. Surgery is at 7am.

Prayer warriors, pray on!

Monday, July 21, 2014

This Kid.

Nolan is so amazing,  I can hardly contain myself when he expresses his thoughts,  vocabulary,  emotions,  humor,  creativity,  you name it.  I can't believe we got so lucky to have him.  I catch him rubbing Miles' head (similar to rubbing the belly of a Buddha statue,  except his head! ), trying to put Miles' glasses on,  and telling me all the time what Miles is doing or feeling. 
Last Thursday I took him to get his second set of tubes. I wasn't as nervous this time,  meaning,  I didn't have as many tears when they put him out.  I held him tight,  whispered "I love you" 7 times in his ear before they scooped his limp little body to the OR table.  10 minutes later and a few prayers,  I was back in recovery to see him.
A nurse was holding him as he held his blanket.  She told me 10 times how amazing he was.  Calm,  gentle,  kind the whole time.  I held him for a few minutes and fed him a red slushie.  I can't stand artificial coloring,  but he deserved this treat!  The nurse gave him 5 stickers,  then went to get 5 more because he was so good.  "Best patient ever" she said.  I loved hearing that.
He was starving,  so I asked what special breakfast he wanted.  He knew Burger King had french toast sticks,  so I obliged and went through the drive through.  Anyone who knows my kid knows he is a big breakfast eater.  He ate 5 french toast sticks as if they were his last meal.
This weekend he goes to Eau Claire to be with both my family and Ryan ' s while we're in the hospital the first week. I told him tonight I was going to miss him so much and that'd I'd cry missing him.  (Haven't been away from him for more than 3 nights) Wise kid told me,  "Don't cry mama,  be brave!  I'll come back! "

Sunday, July 20, 2014

The Generosity and Sincerity of Others

So many people have been prayer warriors for us the last 4 months, and I'm sure, without a doubt, it has helped us.  We've had so many friends and family members spend time with us, take care of Nolan, bring food, gifts, coffee, beautiful plants, take care of Sneaker, given to us to help financially, and so much more. It's been overwhelming to say the least, and I hope someday to help repay their generosity. Of course, all of their selfless selves (ha, does that make sense?) would never expect anything back. Because that's just the kind of people they are. Here are some pics of a few items we've received recently.
My dear friend and teaching partner Jill made these darling capes for the boys.  Fitting for our theme of course of raising superheros.  They are perfect. 

 She also had this sign made for us to hang in Miles' room.
Tara gave Miles this amazing sign for his baptism.  

 My dear friend Laura sent this in the mail for ME to have at the hospital. So thoughtful. And yes, Nolan is already grabbing for the sucker. He did indeed eat it 5 seconds later.

As I said earlier, there is NO WAY I could list everything people have brought for us, made for us, etc.  Everything from gifts for Nolan, to a superhero blanket, to generous monetary gifts, food, (about 15 loaves of Nolan's favorite banana bread!), you name it.  We know God chose us for Miles, but I also know that God helped bring special people into our lives even before he was born. He must have known we'd really need them someday. We are so grateful that we have the friends and family we do.  

Miles' Baptism and Celebration of Life

Miles' was baptized on Sunday, June 29th.  Initially we had it scheduled for July 13th, but the pastor was going to be out of town and the date was cutting it too close to his surgery.  We didn't want him catching a virus, or possibly being admitted early. 

The weather was perfect. The only bummer was that one of Miles' godparents was going to be in town from D.C. the weekend of July 13th, so she wasn't able to make it to our changed date.  Although, thanks to modern day technology, she was able to be with us via skype, and from her desk at the police station, said all the promises, prayers, and "I do's" with Nora and Katie.  She came last weekend to meet Miles. (Still need to get that pic from Ryan's phone.)

During lunch, we did a big balloon launch for Miles.  Everyone took a balloon and said either a well wish or prayer for Miles and his journey in life, and at the same time, we all let them go. It was so fun. I wish I could've heard all the prayers and well wishes, but at the same time, I don't think we needed to. :)  

It was a perfect day to dedicate Miles to God and be surrounded by so much love and support from family, friends, neighbors, and church family/congregation.  Pastor Kevin was so kind and warm, and said he looked forward to Miles growing up in the church and participating in all the events with the other kids and teens.

Here are a few pics from the baptism.

 Our church does a wonderful job including children in the service. This was at the end where all children get to go up from and use various "shakers" to play along with the last hymn.

 So we took pictures after, and Nolan is always sticking his tongue out for pictures to be silly.  With my lack of sleep, combined with his lack of sleep from a hotel stay with family the night before, I snapped and over reacted and told him not to do that.  Miles was also getting crabby.  

 And then the tears came. Ha. Well...that's what makes for an over stressed mommy and a tired toddler.
 Miles wore Nolan's baptismal outfit. He also had a little silk beret and booties, but those of course kept falling off.

Godmothers Katie above, and Nora below. 
 We're calling his godparents our "Three Wise Women."

 Getting ready to launch some balloons for Miles!

 And they're off!

Our cute bugaboo in his silk baptismal outfit!