Saturday, June 7, 2014

Home Sweet Home

Well we made it home safe and sound.  Really not a lot to report.  The trip back was uneventful (again - just the way we like!) and everything quickly went back to normal.  Michele and I were exhausted when we got home on Thursday afternoon, but nothing a good night's sleep in our own bed could not cure.  Unfortunately, Michele picked up an eye infection and that same afternoon we had to take her to the optometrist (a big thank-you to Dr. Verbeck at Harmony Eyecare for getting her in at the last minute!)

While I am saying thank you, there are a couple of more thank-you's that need to be sent out.  Thank you to my mom for coming down and taking care of Ella while we were in Indy, Thank you to all the wonderful people at the Ronald McDonald House in Indy, and thank you to my good friend Becca who saw that we were going to Indy and called us while we were on the road and offered to let us come and stay with her and her family while we were there.  Thank you also (of course) to Dr. Hoyer and all of the nurses, staff, and everyone at Riley who do such an incredible job.  I even want to give a shout-out to the really cool lady who worked in the parking garage.  She was so nice and so friendly - she was a great example and representative of the wonderful people at Riley.

Max is doing great.  He is running and jumping and acting like a nut, and you would never know that anything happened.  He was very glad to see Ella, and I think Ella was really glad to see him too.  They ran around like little buddies as soon as he got home and it was good to see them together again.

In talking with Dr. Hoyer right before we were discharged, he said that based on what he saw,. and on Max's size, he would expect that it will be about two or three years before he outgrows the conduit and it needs to be replaced.  In the meantime, the angioplasty and stent they put in should do it's job, and barring any unforseen events, he does not expect that Max will need to go back up there for anything until it's time to replace the conduit. 

While it's true that eventually Max will need to go back to Riley, and next time it will probably be for the conduit replacement, which is far more serious than the cath he just went through, that is a worry for another day.  For now, we're just going to enjoy having our little boy.



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Wednesday, June 4, 2014

The Results

Here is our end-of-the-day check in.

Max came through the cath just fine.  When he came out of the anesthesia in the recovery room he was not a happy camper, and the fact that nobody would let him move his legs or sit up really ticked him off.  He started to get really upset about the IV in his hand so the nurse gave him some heavy pain meds, and between that and me shoving my iPhone in his face with Johnny Test playing on Netflix, he finally calmed down.

We hung out in recovery for about an hour while they found a room for us, and then they wheeled us up to the third floor to our new digs.  Seriously . . . the rooms here at the new tower are really nice!

We settled into the room and Max watched Scooby-Doo and dozed for a little bit while Michele and I sat around and watched the clock.  As the anesthesia wore off he seemed to start feeling better, and when we finally ordered him dinner he ate almost a whole cheese pizza and drank most of a milkshake.

Right now he is watching Mighty Machines on my iPad and he seems reasonably content, but he is tired and a little cranky, and he keeps making sure to remind us that he really would like to go home now, thank you very much.



What They Did 

 

We talked to Dr. Hoyer right after the cath and he gave us the rundown on what they found and what they did.  They snaked the cath up his leg, through his right ventricle and into the conduit.  From there they went into both the right and left pulmonary arteries.  When they went through the right artery everything seemed reasonably fine, but the left one was narrow and the pressure in it was high.  They used a balloon to widen it but it did not stay open, so they ended up putting in a stent.

He said that the valve in the conduit looked good.

When they pulled out of the left artery the blood pressure in there and in the right ventricle was still a little high, but nothing terrible and not bad enough that it warranted doing anything else.

One thing they did see while they were in there was that the pulmonary arteries did not spread all the way through his lungs as much as they would like to see.  It was hard for him to explain, but picture an x-ray of your lungs and how your blood vessels spread out through them and make a nice, tree-like pattern.  In Max's case, his primary branches don't spread all the way out to the edges of his lungs in a nice, pretty pattern.  He said it was kind of like if you had a sponge and tried to squeeze the water out of it, but you were only gripping it by the edge.  Not ideal.

It was obviously not what they would have preferred to see, but there is not much they can do about it and it does not really change anything.  He said that the blood was flowing into, and out of the lungs just fine, so it is just something that we "put in our back pocket" and note that it is there.  He did not give any indication that it was a significant cause for concern, and I think it just falls under the category of "it is what it is".



Something Kind of Cool


In the "wow, that's kind of cool" category, Max got to be Riley's very first patient to use their new 3D RA cath imaging machine.  Basically it is a machine that they use to give them a 3D view of the cath procedure.  I don't know if this is the specific machine that they used, but it's probably pretty close.

Dr. Hoyer said that they have had it set up for about three weeks but so far there has not been an opportunity to use it.  But Max presented "a perfect case" to use it (his words) and he said it was wonderful.

The machines they normally use give them a flat, 2D view of what is going on, but with this machine they can spin it around to look at it from all angles.  He said that in Max's case, they took a look his arteries from the top (as if they were looking down his neck), and he said that it really gave them a great picture of what was going on with his left pulmonary artery.   You could tell that he really liked his new toy machine.

This video isn't Max, but it shows what it is like:





So that's about it. Max really wants to go home but otherwise we are all resting quietly. Tomorrow they are going to do a chest x-ray and an echo to check things out and to establish a baseline for future reference. But with any luck they will have us out of here before noon and we will be back home before you know it.

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The Waiting Game

Max is in the cath lab and Michele and I have set up camp in the Family Waiting Room.  Nothing to do now but wait.

Here is a rundown of where we are:

We got here at 9:30, checked in, and were taken to a pre-op room where we had a virtual parade of nurses and doctors come in and talk to us.  We talked to the anesthesiologist and then to Dr. Hoyer, who is doing the cath.  He did all of Max's previous caths and we are really glad that he is doing this one too.

I thought that they already knew exactly what they were going to do, but I guess that's not the case.  Instead, they are going to have to go in and do some "looking around" to see what is going on.  Specifically, they will be looking for the area (or areas) that are causing Max's high blood pressure.  It could be narrowing in one or both pulmonary arteries, or it could be in the conduit, or it could be in several places.

Once they get in and see exactly what is going on they will decide what to do.  There is a very good chance that they will use a balloon to widen one or more areas, and they may or may not put in a stent.  He said that one issue they have is that if they widen the conduit around the area where the valve is, it can separate the valve leaflets so they essentially don't close and make a tight seal.

So in short, they really don't know exactly what they are going to do until they get in and take a look around.

Max was holding up fairly well but he was starting to get a little cranky and he kept asking when we could go home.  That was a tough question to answer.

At one point, two child life-specialists came in and they gave Max the breathing mask that they would be using for his anesthesia.  They let him hold it and check it out, and he got to use a tube of stuff that looked like Chapstick to "color" the inside of the mask and make it smell like strawberries.  He also got to put stickers all over it.

About fifteen minutes before they took him back they gave him some medicine to make him drowsy in order to relieve the anxiety of being taken away.  After about ten minutes he started getting a little loopy.  It was kind of funny.

And finally, the nurse who was going to take him back came in and went over a couple of things with us.  It turns out she has pulmonary atresia too.  She is 27 and has had three surgeries and a bunch of caths.  She was really nice and said that she has a special connection with her patients that have PA.

So then the moment of truth came.  We put him in his little bed-with-wheels and they took him away.  He was pretty upset about being taken away and us not going with him, but not as upset as Michele.  To her credit, Michele did do a great job of hiding it from him!  What little troopers - both of them!

Shortly after we came into the Family Waiting Room one of the nurses came in and said that as soon as Max got back into the lab and they gave him the mask, he did just fine.  (Of course I think I would do just fine too if someone knocked me out!)

So here we are . . . just sitting and waiting.  As I write this he has been back there for exactly one hour.  We expect that it will take at least another hour, and probably longer.  In the meantime, we will sit and wait.  Maybe I'll go back to our room at the Ronald McDonald house and get some of our contraband-booze!

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Tuesday, June 3, 2014

Sleepover at Mr. McDonald's House

Well here we are, back at our old home-away-from-home, the Indianapolis Ronald McDonald House.  We left Evansville at about 2:00 and it only took us two hours and fifty minutes to get to the IU Med Center campus (I-69 is awesome!)

We checked in to the RMH, got our room, and then, keeping our promise to Max, proceeded to McDonalds to get him a Happy Meal for dinner.  Probably not the best thing for him to eat but hey, for the next few days, the kid gets whatever he wants!

The picture above is a moose that Max got out of the "Free Toys" box here (which he discovered in about 0.5 milliseconds after we walked through the door).  He named her (he is sure she is a girl) "Pinkie".  Not sure where he came up with that name.

So anyway, after grabbing some food we came back and Max played with a bunch of fun new toys while Michele and I tried to wind down.  As far as he is concerned, this is the world's greatest vacation.  For Michele and I, not so much.

This is probably one of the worst times . . . the night before a procedure.  There is nothing to do but sit, and wait, and think.  You are both exhausted and amped-up at the same time.  I think it is actually worse than the waiting during the actual procedure.

But it was a good (read: uneventful) trip up and so far so good.  We have to have Max at the hopsital (no, that isn't a typo - that's what he calls it) tomorrow around 9:00.  I will put up a post after we talk to the docs and have a better idea of what is happening.

In the meantime, I'm going to re-fill my glass with some of the bootlegged wine that Michele and I snuck into our room. 

I will leave you with a few pics to keep you entertained:


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Monday, June 2, 2014

Here We Go . . .

Hey everyone.

Well, it has been about three and a half years since we brought Max home from his last surgery.  Everything has been going great.  He's been a happy, healthy little boy and everything has been well.  Other than taking a baby aspirin every morning at breakfast and going to see the cardiologist every six months, everything had been perfectly normal.  If you want a few updates on what he's been doing, you can check out Michele's blog here.

About a month ago we took Max in for his cardiologist visit and we heard what we feared, but knew what was coming someday . . . he needs to go back up to Riley.


Basically he needs to go up to have a heart cath.  During the procedure they will try to widen his pulmonary arteries by using a cath to place a balloon in his pulmonary arteries, inflating the balloon, and then installing a wire-mesh stent to help keep them open.  By doing this, they hope to be able to "buy more time" before they have to actually go in and replace the pulmonary conduit they put in him three years ago.  

Here is a picture of a wire-mesh stent.







And here is a picture of a stent deployment.  In this case the stent is being used to widen an artery that is clogged with plaque.  In Max's case, the stent will be used to widen his arteries because they are simply too small and narrow.  (Pretty cool technology, huh?)




His procedure is scheduled for Wednesday so here is the schedule:

  • Michele, Max and I will go up to Indy tomorrow (Tuesday) afternoon.  We hope to be able to get into the Ronald McDonald House, but if we can't, we will get a hotel room.
  • We have to take Max in to Riley around 9:00 in the morning.  He is slotted for the #2 spot in the cath lab.  With any luck, everything will go alright and the procedure will be done early Wednesday afternoon.
  • Based on the nature of the procedure, they will probably keep him overnight.  That means a fun night sleeping in a chair in his hospital room.
  • Hopefully they will discharge us Thursday morning and we will come back home.

So that's the plan.  Hopefully Max will cooperate and go along with it!  We will keep you all updated through the blog and through Twitter (there is a feed in the sidebar to the right), so keep checking back.
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Wednesday, September 22, 2010

Back Home

Just a quick post to let everyone know that we made it back home yesterday safe and sound. Unfortunately Michele seems to have picked up some kind of stomach bug, so she was down for the count last night and this morning. Hopefully it's just a 24 hour thing, but we're keeping her away from Max just to be safe.

Ella was glad to see us. She's still a little chatterbox but I swear she's grown since we left. She was happy to see Max and she loves all the little toys he acquired while he was in the hospital.

I'm back at work so I don't have time for a long post, but I will be adding some followup entries as soon as I get a chance.
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Tuesday, September 21, 2010

Ready to Hit the Road


Tuesday, September 21, 2010, 12:45 p.m.

We’re outta here! They’ve taken out Max’s central line, disconnected his sensors, and cleared us for takeoff. We will be heading home as soon as we check out of the Ronald McDonald House and with any luck we’ll be back in Evansville in time to pick up Ella from daycare.

I will post a followup once we get home.
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What a Difference a Week Makes


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Jailbird


Our little jailbird waiting to be released.
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Hurry Up and Wait


Tuesday, September 21, 2010, 11:00 a.m.

Max is doing well. He’s climbing around his crib like a monkey and last night he took a wagon ride around the heart center.

The cardiologists just did rounds and said that Max is ready to go. His x-ray looks good, his O2 levels are where they want them to be, he’s eating well, and they are ready to let him go.

While they were here we asked them whether we needed to be watching for anything over the next couple of weeks. They said no. Other than the normal advice for anyone who has just had surgery (don’t overdo it for awhile, keep the incision area clean, etc.), he is good to go and there’s no reason not to treat him like any other one year old. He’ll be on a couple of medications for a little while, but nothing long term.

So we’re just sitting around waiting for them to come and take out Max’s central line, unhook him from the monitor, and discharge us. The final ok has to come from the cardiovascular surgery team so hopefully they will be down soon. I’ll post as soon as we hear anything.
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Monday, September 20, 2010

Anesthesia


Max is taking a nap and a resident from anesthesia just came in. He said that he knew Max's procedure was six days ago but he was just following up. He asked if we had any questions concerning the anesthesia side of things.

I pointed at Max (who was actually snoring a little) and said, "Yeah. When's he going to wake up?"

Some doctors have no sense of humor.
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At the Game


WOW - look how great our seats were at the Colts game last night!

Just kidding - see the post below for what the view from our seats really looked like!
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Life in the Cheap Seats


Monday, September 20, 2010, 12:05 p.m.

So here is the real view from our seats. Those little dots down on the field - those are the players.

But our seats weren't entirely bad. It was a beautiful night and we got a lot of fresh air because they opened the roof (and because we were so close to it!)

All kidding aside - we did have fun at the game. We did get to go down on the field and have our pictures taken, and the game was a complete blowout: Colts - 38, NYG - 14. But most of all it was just nice to get away for the afternoon and evening. Michele and I have to send a HUGE thank you to Aunt Loie and Kehla for coming to the hospital and watching Max for us. Although the nurses here are great and we put a lot of trust in them, I don’t think we would have felt comfortable leaving Max for the entire afternoon and evening without someone to watch him - so again - a huge thank you!

So far Max is doing very well today. They took him off oxygen this morning to see what would happen. His blood oxygen saturation levels bounced around in the mid-80s for awhile, but he then got up to the lower 90s and pretty much stayed there. It sounded like he had a little wheeze in his breathing so they ordered an Abuterol treatment for him, which is administered by holding a mask over his face and letting him breathe in the vapors for about five minutes. Needless to say, he hated it and threw a fit the whole time.

Here's a sample of the conversation between me and the respiratory therapist as we stood on either side of Max's bed during the treatment:

Me: Sorry he's throwing such a fit.

RA: He's not so bad.

Me: WHAT? (trying to grab Max's kicking arms and legs)

RA: (yelling above Max's wailing): I SAID, "HE'S NOT SO BAD!"

We were all somewhat puzzled because during and after the treatment his sats fell back down into the mid-80s. Finally the respiratory therapist changed his biox probe and walla - instantly up into the mid and high 90s.

After that he went down to have an x-ray. Again - PURE TORTURE. He threw a complete fit while they were taking the x-ray and then stopped the minute they finished. You would have thought the sign on the door said "Waterboarding" instead of x-ray!

So after a busy morning of fit-throwing he decided it was time to take a nap. I kept an eye on his sats while he was sleeping and they were at 91 pretty much the entire time.

While he was napping Dr. Hoyer (Max’s primary cardiologist) came and did rounds with the unit doctors, nurses, and a gaggle of med students. They had a good opportunity to listen to his heart and lungs since he was asleep. The med students were able to hear a great example of a slight systolic murmer. Max woke up about halfway through the exam and his sats went from 91 to 96-97.

Dr. Hoyer said that he looks great, and he thinks they will probably look at sending him home tomorrow. He listened to his lungs and said that the wheeze is defintely upper respiratory (as opposed to being in his lungs) so it’s nothing to be concerned about. They are going to talk to the surgeons and hopefully make a decision today or tomorrow morning about sending us home.

So that’s the latest. Other than the meltdowns during the Abuterol treatment and x-ray, Max has been in a pretty good mood. He has been doing laps around his crib and I think he is as ready to get out of here is we are. With any luck we’ll have a good day today, a good night tonight, and they’ll let us go home tomorrow afternoon.
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Sunday, September 19, 2010

Rainy Sunday


Sunday, September 19, 2010, 9:35 a.m.

There is not a lot to report this morning. Max had another quiet night and this morning he apears to be in a good mood. They took him down to have a chest x-ray (which he didn't like) but now he's back, sitting up in his bed waiving a waffle-stick around and playing with a plastic cup.

It's an overcast day here in Indy and Michele and I are just going to hang out here in the room until it's time to go over to the stadium. We have to be there at 4:20 to pick up the tickets. We get to go down on the field and get our picture taken. Then we'll come back to the hospital for awhile, and then head back to the stadium around 8:00 for the game. Aunt Loie has graciously offered to come and sit with Max while we are gone.

Our friends at the Cheer Guild gave Max a cow (pictured above) to go with the new cow valve in his heart.
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Saturday, September 18, 2010

King of the Castle


Saturday, September 18, 2010, 4:45 p.m.

They were able to move Max to a single room so now he's the king of the castle.

They just changed the bandages for his chest tube and for the central line in his neck. He screemed and carried on like it was the end of the world. When they were done he had worn himself out so much that he fell asleep on Michele's lap within about three minutes.

When they first moved him into this room they left him off the oxygen to see how he would do. His blood sats hovered in the mid 80s so they put the canula back in and gave him oxygen at 1/4 liters per minute and that brought him up to the high 90s. I can't understand how he can be in the 80s when off oxygen but back to normal on just 1/4 lpms. I don't know that they can reduce it any more than that.

So everything is quiet and we are all settled into Max's new room. Hopefully we won't be here too long.
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In the Heart Center


Saturday, September 18, 2010, 11:10 a.m.

They moved Max to the heart center last night. They did it at about 2:00 a.m. so they must have needed his bed in the PICU. Both the PICU and the heart center are more or less full and I think they have been struggling to find room for everyone. We are ok with them moving Max, although we would have preferred not to have had it done in the middle of the night. But last night Dr. Rotta said that Max was going to be "first on the launching pad" for moving to the heart center, so he was ready to be moved, and if another baby needed the PICU bed, we're happy to give it up.

We are not sure how much we like being in the heart center. The nurses here are really nice, and things are quieter, but Max is in a double room and there is not much direct supervision. The nurses watch his vitals from monitors at the nurses' stations, but they are not right outside the rooms. One of my concerns is that Max is a lot more mobile now, and he still has a lot of wires coming off him and it seems to me that it would be easy for him to get tangled up in them. Michele and I think that one of us probably needs to stay with him almost all of the time - although the nurse said that it is fine for both of us to leave, and that when they know there is not a parent in the room, they will check on him more frequently.

We have no idea how long we will be here but the cardiologist this morning said that it could be another week. We're hoping that it won't be that long but we will just have to wait and see. Max's white blood cell count is back down to normal and he seems to be coming along great. He still has quite a bit of congestion, but they said that is normal.

I think that a lot will depend on how long he needs to continue to have oxygen. Right now he is only on one liter, which is not much, but when they take him off it completely his oxygen saturation levels go down. Apparently that is normal, and it just takes them awhile for their body to adjust to the new blood supply after surgery. Eventually his body will adjust and they will be able to take him off it completely. I think that how quickly that happens will be a primary factor in deciding when we can go home.

Interjection - as I was writing this post the doctor came in. She said that Max does not have pneumonia (we didn't realize that they thought he might). She said that she spoke with Dr. Turrentine and he said that what is showing up on his x-ray is new blood flow to the lungs and it was totally expected. She also checked with the infectious disease specialist and he confirmed that he does not have pneumonia. His elevated white blood cell count was probably just his body's reaction to the surgery.

While she was here, the doctor also turned his oxygen down to ½ liters per minute. Max was sleeping and his sats were at 100%, and they did not drop after she reduced the oxygen - which is a good sign.

In non-medical news, Michele and I just found out that we won a set of tickets to the Colts vs. Giants came tomorrow night. The Colts donated 20 tickets to the Ronald McDonald house and Michele put our name in the drawing.

So that is our status. We're not sure how long we will be here but hopefully it will only be a couple of days. We'll keep posting updates on his progress
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Friday, September 17, 2010

Beginning Another Day


Friday, September 17, 9:20 a.m.

Max had another good night last night and he looks good this morning. He alternates from being fussy to being lethargic, and you can tell he doesn't feel well, but overall he looks good and his stats (heart rate, blood sats, CO2 levels, etc.) are all good.

Michele and I got to his room just when they were doing rounds, so we were able to get the full report. The infiltrate in his right upper lung is looking better and his white blood cell count is down, so he appears to be trending in the right direction.

Yesterday his 'output' was not quite what they wanted (that's the polite way of saying he wasn't peeing and pooping as much as he should be) but that seems to have more or less resolved itself. He still seems to be getting quite a bit of air in his belly, but that's probably because he has been crying and fussing this morning. He also still has quite bit of congestion in his chest that he can't cough up because it hurts so much when he coughs (which of course has to be frustrating).

They just now took out his arterial line. I'm glad for that - fewer lines is better as far as I am concerned. They are also letting him take solid food and formula and are trying to ween him off the oxygen. He really hates the canula in his nose and I think that if they can take that off of him it will go a long way toward making him more comfortable.

There was talk of moving him to the heart unit today but Dr. Turrentine came in this morning and, after looking at him for a few minutes, said that he didn't think he was ready - maybe tomorrow. I think the accumulation of gas in his belly and the fact that he was fairly lethargic clinched it - one more day in the PICU.

The picture above was taken last night after they washed him up and gave him a sponge bath. He was a little chilly from being wet so they wrapped him up like a papoose. The look on his face sort of tells you how he feels right now.

But as lousy as he may feel, he is progressing very well and we are pleased. So far this recovery is going much better than last time.
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Thursday, September 16, 2010

Step-by-Step


8:10 p.m.

Well the day had its ups and downs but mostly ups. Overall Max seems to be making good headway. He has quite a bit of congestion in his chest and it hurts him to cough, and he still seems to some excessive gas in his belly, but he looks and acts much better than he did yesterday - or even this morning for that matter. He is much more alert and, although he still has periods where he is fussy, he is starting to have just as many periods where he seems reasonably content. Michele's mom even coaxed a half-smile out of him.

They took out his chest tube and the leads that went to his heart, so little-by-little the lines are disappearing. Michele has been able to hold him and we had him sit up in his bed several times this afternoon(which helps with the congestion).

Although he certainly isn't feeling good yet, he seems to be tolerating things reasonably well, and he is definitely heading in the right direction. Unlike last time, this time he seems to be willing to follow the game plan (what a little team player he is!) We doubt they will send him up to the heart unit tomorrow, but it looks like we might be able to reasonably hope that they will release him from the PICU on Saturday or Sunday.
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Slow Progress

Thursday, September 16, 2010, 10:45 p.m.

Max had a relatively good night but it looks like it may be a difficult day. His breathing is labored and the x-ray this morning showed an infiltrate in his upper right lung. He has also had a low grade fever and his white blood cell count is up so they are doing some labs to check for any infections. Overall they do not seem too concerned, but they are keeping an eye on it.

They started giving him some formula and even gave him some baby food last night.

He was restless and irritable this morning but not quite as agitated as he was yesterday. They are weening him off the sedation and you can tell he is just miserable. On top of everything else, he appears to have quite bit of gas in his belly. He is pretty bloated and I am sure that is adding to his discomfort.

So things are going alright. A few minor issues but so far nothing to be too concerned about. They've made a bunch of changes to the medications and today they are going to take out the chest tube and the line that is connected directly to his heart. It will be good to have a few less chords coming out of him. They also took his catheter out about an hour ago.

He's sleeping right now but I have a feeling that for the next few days he's going to be uncomfortable and unhappy.

Michele and I are holding out alright. We were exhausted yesterday so we went back to our room relatively early last night. I think both of us were alseep within 20 minutes. It's amazing how tired stress can make you. It's extremely difficult to watch your baby suffer and not be able to do anything about it.
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Wednesday, September 15, 2010

Off the Vent


2:00 p.m.

Max has been off the vent for about two hours. His breathing seems to be fine, but he is really agitated and keeps throwing fits. They have given him pain medication and some seditives but he's still pretty wound up. Michele and I are pretty sure it's mostly because he is thirsty. When we let him suck on a swab dipped in sugar water he quiets down a little. Unfortunately they can't let him eat or drink for a few more hours in case he has to go back on the vent.

So this is one of the most stressful periods - trying to keep him calm and quiet without being able to hold him or give him anything.
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Quiet Night


9:20 a.m.

It was a quiet night. Quiet is good. We like quiet.

Max did well. He occasionally became agitated but they were able to pretty much keep him calm and comfortable with sedation medication. He looks good this morning and they are still planning to take him off the vent. The doctors are doing rounds and after that they will take a look at him and probably start the process.

We'll let you know how it goes.
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Tuesday, September 14, 2010

Status Report


9:20 p.m.
Ok - I have been trying to write this post for about an hour and a half now. Each time I finished it they changed the plan. Then I couldn't get an internet connection - so you are getting this late night report.

Here is where we are.

They were able to do a full repair. They implanted a 12 mm Contegra bovine jugular vein conduit, and they did a full patch of the VSD. The surgeon put a small hole in the patch to act as a valve in case the pressure in Max’s pulmonary arteries got too high, but the echo they did after the surgery indicated that everything looked good. The hole in the patch is very small so they will not need to close it later. As long as nothing unexpected happens, Max should not need any more surgeries until it is time to replace this conduit. That will happen when he outgrows it and/or it begins to wear out or calcify. A replacement could be needed around five years of age, but according to everyone we have been talking to these conduits and valves often last until age seven or eight.

Michele’s brother asked Mark, the Medtronics rep that deals with Riley, to come visit us while Max was in surgery and answer any questions we had about the conduit -which he very kindly did. Mark said that one of the newer developments in this area is a replacement valve that can be implanted through a cath, rather than through open heart surgery. That’s still cutting edge stuff, but hopefully by the time Max needs his replacement that will be a relatively common method of doing it. At any rate, I am pretty sure that Riley will be on the leading edge of that procedure as it develops.

They brought Max to the PICU around 3:30 and got him stabilized. He’s still on the vent but all of his stats look really good. His heart rate, BP, and blood gasses look good, and his blood saturation (how oxygenated his blood is) has been 98 - 99% (before the surgery his normal saturation level was in the low 80s).

The original plan was to try to extubate him around 8:00 and get him off the vent. However, Dr. Turrentine (Max's surgeon) came around that time and said that he would rather have him stay on the vent tonight if trying to take him off it is going to cause him to get agitated. Max needs to stay calm in order to let the blood around his sutures clot. He has a drainage tube in his chest and, although he is not bleeding enough to be concerned, he really needs time to let things heal up a little - and every time he gets mad he bears down and that causes more drainage. If it got too bad he could rip a suture and they could potentially have to take him back in the OR.

So Dr. Turrentine was going to leave it up to the PICU people to make the call, but about twenty minutes later they were discussing it and he made the decision to keep him on the vent for the night. By keeping him on the vent they can keep him under heavier sedation. If they take him off the vent, they cannot sedate him too much or there is a risk that he could stop breathing.

Michele and I are totally fine with the decision to keep him on the vent tonight. As much as we want him off the vent, neither one of us could handle it if he had to go back into the OR. If by keeping him on the vent they can keep him calm and comfortable and thereby reduce the risk of damaging the work they did in surgery today, we're all for it. Better safe than sorry.

So that's where we are. Overall things look pretty good. They will keep him sedated tonight and we will try to get him off the vent tomorrow.
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Closing Him Up


1:30 p.m.

They are finishing up with Max. The conduit is in and they are doing an echo with the cardiologist to check everything. He is still on bypass but they are starting to warm him up. If the echo looks good and they are satisfied that everything is how they want it, they will take him off the bypass machine, close him up, and get him over to the PICU. We are not sure whether they will be able to take him off the vent yet.

While they are getting him settled in the PICU we will meet with the surgeon to talk about how it went. I may not be able to post for awhile but I will Twitter-in quick updates and post a detailed recap when I get a chance.
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Patching the VSD


12:15 p.m.

The nurse just told us that when she was in the operating room they were in the process of patching the VSD.

We are a little confused because she said that they have not yet put the conduit in, and we were under the impression that one of the factors in determining whether they could do the patch was whether the pulmonary arteries could handle the pressure once blood started going through them. Hopefully that means they were encouraged by what they saw and had confidence that the PAs will be able to handle the load.

We still have a long way to go so we're going to stick with "reserved optimism" for right now.

We'll keep you posted.
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He's In


Max went into surgery at about 7:30. It takes about an hour to get him put under anethesia, set the IVs, central line, etc., and get him all prepped, so it will be awhile before they actually start the surgery. The picture to the left is Max in the pre-op room wearing his fashionable plaid gown. It looks like a dress and I told him we are going to show this picture to his prom date when he gets older.

We're settled in here in the waiting room with our coffee, books, computers, and bag-o-snacks. Nothing to do now but wait. Michele's parents came to Indy yesterday afternoon so they are here with us, keeping us company.

Yesterday the surgeon said that he expects the surgery will last through early afternoon at least, but a lot will depend on whether they do the VSD. If they do, then the surgery will take longer - so in this case a longer surgery may actually be good news.

A nurse comes out once an hour to give all of the families an update so we will keep you posted as the news comes in. I expect the first update will be that they are still getting him prepped, so there may not be anything new for awhile. I will probably just text-in the small updates so keep your eye on the Twitter box to the right.

Thanks to everyone who has been praying for us. We very much appreciate your thoughtfulness.
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Monday, September 13, 2010

The Plan


Sorry I haven't had a chance to post anything until now. It's been a long day and to be honest, I don't really have much new news.

We checked in at Riley at about 11:00 (Indy time) and they poked and proded Max, and asked a million questions about him (has he been sick lately, has he developed any new allergies, etc.) We talked to the nurse practioner and the anesthesiologist in the early afternoon, and then talked to the surgeon around 6:00. They all told us pretty much what we already knew. Things may change once they get in and actually see what is going on, but the plan is to put in the rv-pa conduit and to try to close the VSD if possible. The conduit will probably use a bovine (cow) valve but they can't be sure what specific type of conduit they will use until they get in and see what will work best. The plan is to try to unifocalise if possible - but they said that unifocalisation can be very tricky and they really won't know if they will be able to do it until they can actually see what they have to work with. So there are a lot of unknowns but the basic plan is still the same - go in and fix it.

Max handled everything very well, although he didn't like it when they drew blood from him. And he had to have a chest x-ray which REALLY ticked him off. But he got a really cool rattle out of the deal so over all he came out all right. And he was the only one in pre-op today so he got all the toys to himself.

So things are more-or-less how we expected them. He has to be at the hospital at 6:00 local time, which is 5:00 Evansville time, so it's going to a short night and an early morning.

The Ronald McDonald house once again came to the rescue and squeezed us in - so we are all set up with a room. I'm serious about dropping your change in the little donation container when you go to McDonalds! I can't overstate how incredibly important they are to us and other families who need a place to stay while their sick child is in the hospital.

We'll keep you posted tomorrow as things progress. We have added Twitter to the blog so I can post quick updates with text messaging but I will try to post more detailed reports as things progress.

But for now - we're going to bed!
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Sunday, September 12, 2010

Packing



Sunday, September 12, 2010, 8:05 p.m.

It's Sunday night and we're trying to finish packing and finalize the one million things that need to be done before leaving for an extended period. We are heading for Indy tomorrow morning at 6:30 a.m. Max's surgery is scheduled for Tuesday morning and we have to meet with the cardiologists and surgeon at 11:00 tomorrow for a pre-op exam and meeting.

You can read about it in more detail below, but the short story is that this will be the primary corrective surgery. During this procedure they will insert an artificial conduit and valve (probably bovine) where Max's pulmonary artery is supposed to be. I assume that once the conduit is in they will remove the shunt they put in last time, but I'm not sure. We should know more after tomorrow's meeting.

They may also try to patch the VSD (the hole in the septum wall between his left and right ventricle) during this procedure. As described below, they typically wait to close the VSD, but in some case they can do it during the same proceducre. They may also close the VSD with a patch that has a smaller hole in it, with the idea that they can later patch the smaller hole with a cath rather than another open heart surgery.

We should hopefully know more after the meeting tomorrow. Over the next few days (weeks) we will post information as we receive it so keep checking back.
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Thursday, July 22, 2010

Back Home - Safe and Sound


Thursday, July 22, 2010, 8:00 p.m.

We're back home - safe and sound. They let us go at about 4:30 (3:30 Evansville time) and the trip back was uneventful (just the way we like it!)

Max recovered just fine. Within about two hours of being put in his room he was sitting up in his bed and trying to grab everything within his reach. He was pretty hungry and ate quite a bit throughout the day. He refused to take a nap as long as Michele and I were in the room but as soon as we left he zonked out within five minutes. He also slept most of the way home during the three hour drive (which means he's wide awake and read to play now).

Michele and I are exhausted but we're glad we came back home tonight. As much as we appreciate the Ronald McDonald House, it doesn't come close to sleeping in our own bed.

It's amazing how much a 'simple' thing like a cath can take out of you - physically and mentally. Max is bouncing around like nothing happened but Michele and I feel like we ran a marathon - and then sat down and did our taxes! Considering the fact that Max and Dr. Hoyer did all of the work, I find that very strange.

Oh well - Michele and I are going to open a bottle of wine (we could use it) and sit down and relax. We've still got a long way to go - but at least we are one step further down the road.
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He's Out - Here's the News


Thursday, July 22, 2010 11:30 a.m.

Max is out of the cath lab. He got through it just fine and they just wheeled him into his recovery room. He's still pretty groggy - and I am sure that as soon as that wears off he will be pretty cranky (not that I blame the poor kid!)

The doctor said that things looked good. His pulmonary arteries have grown some and are now close to the size of what a normal child's would be at this age. There is still one good-sized collateral artery that is supplying blood to the lower portion of his right lung, and they will need to decide how they want to deal with that, but all of the other collaterals look about as good as they could hope for. Dr. Hoyer seems to think that he is in a good position to be ready for his next surgery.

The next surgery will be the primary 'corrective' surgery where they will connect his pulmonary artery to the right ventricle of his heart. That will allow the blood to go from his heart to his lung through the pulmonary arteries (right now his blood is getting to his lungs through the shunt the surgeon implanted last time).

Dr. Hoyer said that there is a decent chance that during this next surgery they will go ahead and patch the VSD (the hole in the wall between his right and left ventricle). Normally they do not patch the VSD until later because when they connect the pulmonary artery to the heart, it can create quite a bit of pressure in the left and right pulmonay arteries. By leaving the VSD open it acts as a safety pressure valve. But in some cases, when they feel that it would be safe to do so, they go ahead and patch the VSD at the same time.

One thing they may consider doing is closing the VSD with a patch that has a hole in it. The hole in the patch is smaller than the VSD but big enough to act as a safety valve to relieve excess pressure in the pulmonary arteries. Sometimes they can then later close the hole in the patch through a cath procedure, which is a lot less invasive than doing another open heart surgery.

So the cardiologists and surgeons will meet and go over Max's case and come up with a plan. But either way, they do want to go ahead and get the next surgery on the calendar.

Right now Max is in recovery and seems to be doing well. We think that there is a good chance that they will let us go this afternoon, which would be nice.

We'll keep you all updated.
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Back in the Cath Lab


Thursday, July 22, 2010, 8:15 a.m.

Max is back in the cath lab.

We got into Indy last night and stayed at the Ronald McDonald house (our home-away-from-home). Max was first on today's schedule so we had to be at admitting at 7:00 (6:00 our time) and then down to the cath lab. Max couldn't eat for several hours before the cath so he was tired and hungry and grouchy (kind of like his dad!)

They took him back around 8:15 and we are now just sitting here in the cardiology waiting room waiting for someone to come tell us how it went. It will be at least two to three hours so we won't know anything for awhile - but I will keep you posted as soon as we learn anything.
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Friday, June 11, 2010

Being Pruned


One of the most common questions I get (besides “How’s Max doing?”) is “How do you handle all of this?” This question is second only to the comment “I can’t imagine what it must be like.”

To answer this question I have to refer to a portion of a sermon that Mark Driscoll of Mars Hill Church in Seattle Washington preached on September 11, 2005 (which is, coincidentally, my birthday). I've become a big fan of his. He has an uncanny ability to hit the nail on the head every time, and he makes you think about things more deeply than you ever have before.

I know this excerpt is long - and it may seem a bit off-topic at first - but if you read it through, Mark brings it around, and in the end he makes the point far better than I ever could.

Here’s what he says:

“Jesus says ‘He (that’s God the father) cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful.’

What’s the key to fruitfulness? Pruning. Everyone wants fruit, noone wants pruning. Pruning for us is failure. It’s hardship, loss, discipline, pain, struggle, sickness, suffering. Pain hurts. Pruning hurts. Pruning hurts like hell. I’m not going to lie to you. If you want to bear fruit - in your marriage, your life, with your family, your kids - you’re going to have to be pruned.

Let me give you an illustration. My house is built on an old apple orchard and there were a number of apple trees. They took them all out except two that they left on the lot when they built the home. And in the corner of the lot is an apple tree that has been there for many, many years. It’s a smaller apple tree but it has not been pruned in 20 to 30 years. And the branches shot way up into the air. And then they got filled with fruit and they got so heavy that the branches collapsed onto the ground - and for years the branches have literally been growing on the ground. The tree is small but it takes up a huge majority of the corner of the yard in circumference. It's enormous.

And it's interesting because now the tree could not bear much fruit. Just these little pathetic apples. My kids moved in and they were all excited, ‘We have an apple tree!’ They took the apples off, they took a bite - 'these suck!' - and they threw all the apples at the tree. My boys are out there cursing the tree - chucking the apples back at the tree. Running around with no shirts on - true story - took their shirts off, declare war on the tree, and are throwing all the bad, little, pathetic apples at the tree.

So I decide we gotta’ do something with this tree. So a gentleman at this church named Camron, great guy, good gardener, comes out to prune the tree. And he jumps in that thing - by the time he’s done there is nothing left but a couple of twigs and a branch - there’s nothing green left on it. The tree is really small and there is nothing on it. It looks like it is absolutely dead and gone. I look at him and say ‘Well. I don’t know anything about trees but that doesn’t look good. There’s nothing green on the tree.’

And here’s what Camron says. Camron discipled me on this. He said, ‘Well it’s wasted energy for all these years and it can’t bear fruit, and if its not pruned eventually the tree will die. But now we have done strategic, extreme, painful, traumatizing pruning. And right now the tree is traumatized. But what you will see - if we continue to prune - slowly green will come. And then much fruit will come. And the fruit will be healthy and strong and good. But because it's been neglected it needs a severe pruning and it’s now traumatized.’

I walk out of my house every day and I think ‘Man, I’m like that tree.’

There are seasons where we bear fruit, we grow wild, and we get severely pruned. And for awhile we’re traumatized and it hurts - and it looks as if we’ve nearly died. And then you come out one day and it’s green - and there’s fruit - and harvest.”

How do I handle all of this?  I try to keep that in mind.

Mark Driscoll - Mars Hill Church - September 11, 2005

http://www.marshillchurch.org/media/genesis/israel-blesses-his-grandsons
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