The Journey of a Sweet Little Boy and His Special Heart

Tuesday, December 31, 2013

Ready for 2014 and Homeward Bound

2013 wasn't a bad year by any means.  But I am ready to have this month behind us (and everything that led up to this month).  I am excited for what 2014 will bring for our family and this little boy of ours with his new found energy.
Dr. Rome gave us the clear to fly home tomorrow.  We were nervous because his appointment took forever.  As we waited for the doctor I really didn't know what I would do if they re-admitted us.  It is strange how you just deal with whatever is handed to you, but I really think I would have crumbled if we had to stay here another day. 

I have a lot of respect for this man and equal respect for his wife.  His wife was the attending physician on the floor when Logan's lungs collapsed.  I was reminded today again that Logan truly had angels watching out for him.  It has been a hard thing for me to process that his surgery went well, but in something so simple as a chest tube being pulled we could have lost him in minutes.  It's a good thing I didn't understand everything that was going on at the time.  I was worried Logan wasn't getting enough oxygen and that they would have to intubate him.  Really the concern was that Logan would go into cardiac arrest at any moment.  With the Fontan anatomy the ONLY way for blood to reach the heart is through the lungs because they have re-routed the arteries to bypass the heart and flow to the lungs.  By having his lungs collapse there was no longer a pathway to his heart.  I get the sense everyone is amazed at the true miracle it was that Logan did as well as he did and doesn't have any lasting effects from it. 
I am still a little nervous about coming home.  We have checked with every doctor about flying home and they all say it is safe.  But I will be a nervous wreck I am sure until we are there.  And then Logan adjusting from sea level to altitude is another thing that worries me. 
I am so happy to have the Fontan behind us, but I can't say it has lessened my worries and anxiety... YET.  I know that will come with time.
I am looking forward to celebrating the New Year with my entire family together. 
Goodbye Philadelphia!

Monday, December 30, 2013

Getting Out

Our goal today was getting out while at the same time making Logan take it easy!  The second we walk out the door of our room here Logan says, "Put me down so I can RUN!" and then he goes flying down the long hallway.  My goal is to get it on video, but I am usually running so fast to make sure he doesn't get on the elevator alone that I don't have time for pictures.  He has been complaining his chest and back hurt so I know he has been pushing himself, but it's like he just can't help but to run.  We would have loved to just get out and walk outside today, but it was cold so we went to the mall to just have a change of scenery and get out and walk. 
I am still ultra-paranoid about germs.  I can't imagine how much it would hurt Logan to cough right now or how his lungs and heart would handle a cold.  He is a good sport and doesn't mind wearing a mask.  We just window shopped and he loved the change of scenery too.

We got him his favorite pretzels for lunch.
And went to see Frozen again.  I could have watched Logan's face the entire movie.  I think he liked it even more the second time.  He would get so excited when the songs came on that he knew.

All tuckered out!

He has elevators all figured out and is the only one allowed to push the buttons.

We ventured back out for dinner tonight.  The thought of another casserole made us all a little nauseous.  So we walked a block in the freezing cold to Chilis.  Logan loved it as you can see!

We are anxious for his appointment in the morning.  He seems to be on the mend and we don't see any obvious reasons they shouldn't give us the go ahead to fly home. 
I am still trying to figure out how Logan is processing this whole thing.  He did so much better than I thought he would in the hospital.  He didn't ask go home and he didn't have the response to doctors that he usually has.  He would ignore them for the most part and let them listen to him and look at his ouchies.  Now that we are out of the hospital it's like he has woken up from a daze and he knows what is going on now (almost like he chose to not be completely present in the hospital).  He asks to go home all the time now and when Brad and I try to check his bandages he freaks out if we even try to lift his shirt.  Tonight I was just simply trying to get a sticky residue off his hand and he was so frightened I stopped and just held him.  I just had a gauze pad, but it must have been just enough to remind him of the hospital.  It breaks my heart.  I can't imagine how a 3 year old processes all of this. 
Hoping for a great appointment in the morning so we can come HOME, a little dose of Ashlyn and Tanner will do this boy some good (and his mama).  It's been a LONG  3 weeks away from them.

Heart Family

This "heart world" as we call it, is a strange thing.  It brings complete strangers from completely different walks of life and different parts of the country together, and creates a bond that can't be explained.  You really feel sort of a kinship with families that know your struggles.  That have been in your shoes, and that just GET it. 
I wrote this post back in 2011 about our friends the Jackleys that we met here in Philadelphia three years ago.  Lots of time has passed, but we have stayed in touch.  They said they wanted to spend time with their "family" on Christmas.  We were lucky to be that "family."  They were so incredibly sweet and generous to spend their Christmas making ours a little brighter.  They spoiled Logan with more presents (he LOVES unwrapping gifts) and they brought us dinner that lasted us for 3 nights.

The Jackley clan with Logan

Stacie and I with our sweet boys 3 years ago.

Now look at these boys.... they are our miracles. 

We loved the Christmas visit.  We thought that would be our only chance to see them, but with our crazy set back the day after Christmas earning us a few more days here we got a chance to see them again yesterday.
They were kind enough to open their home up to us.  It was so nice to be in a HOME.  Not a hospital, not a "hotel" room.  It is crazy how different a home can feel. 
Logan LOVED it.  He was in heaven and loved playing with friends (as much as he loves mom and dad's undivided attention I think we are getting old)!

Thank you Stacie, Tommy, Kaylin, and Kellen

Saturday, December 28, 2013


It really happened, we walked RAN out the doors of the hospital today. 
 We really are on the roller coaster ride of our lives.  Up, down, up, down... we are appreciating the upside right now!  Crazy to think Logan recovered so fast from 2 collapsed lungs on top of everything else, but his last 2 x-rays showed his lungs were great.  Dr. Spray said he is completely confident that his lungs collapsing were solely a "mechanical" thing from the tube being pulled and that his lungs are recovering and strong.
Logan wasn't sure what to think when I told him we could leave.  At first he said he didn't want to.  And then when they took out his IV and took him off all his monitors he understood that he really could LEAVE, and he started running and didn't stop. LITERALLY.  He has never walked the distance he did leaving the hospital in his ENTIRE life, and he not only walked he RAN most of the way.  It is a moment that will be stamped in my memory forever. 

We almost lost him to an elevator!  He surprised us and ran so fast in front of us and walked into an open elevator.  We barely made it before the doors closed!  Scared me half to death.  We are so used to having him attached to an oxygen cord/leash! 

A view that probably doesn't mean much to anyone but Brad and I, but the distance of this hall would have been like Logan trying to run a full marathon before this surgery, and today he ran all the way down it without even getting winded. 
Logan has felt it.  He knows it.  He keeps trying to escape from our room at the Ronald McDonald House to run some more.  We have had to force him to rest because he has already over done it.  I have a feeling he is going to be hard to keep up with now.
We are watching him close and will stay in town for a few days.  We have an appointment Tuesday morning and if things continue to improve and look good we will get the thumbs up to come home. 
I have so many pictures to post of Logan making the rounds this morning to tell everyone goodbye.  I will get to it sometime this weekend.  I feel so emotionally drained.  We got to our room here at the RMH and all three of us were asleep within minutes of dropping our bags.  I can't tell you how nice it was to lay on a bed and have some privacy!
Thank you everyone again for your love, support, and prayers.  Although we are so far from home we have never felt alone in this. 

Friday, December 27, 2013

1 in 100,000

Bi-lateral pneumothorax from a chest tube being pulled happens in about 1 out of 100,000 cases.  Logan was that #1 yesterday.  And from the sound of it maybe the first in this hospital (at least as long as those working here can remember).   He has caused quite a ruckus around here.
Yesterday was a really, really hard day.  Today as we process everything it is a little surreal to learn more and find out just how scary things were.  If I could have taken a picture of the hall lined with doctors waiting for Logan and then the doctors waiting in his room, it was completely organized chaos.  It was the scene you watch from the sidelines and pray for that poor family, never thought we would be that family. 
They placed the new tube in Logan and were able to drain the air bubbles immediately and his lungs responded very well.  They stabilized him all day in the ICU and then let him go back to his old room that was familiar and more comfortable for the night.  We had the most thorough, organized, OCD nurse I have ever met last night (that was probably not an accident).  She had her eyes glued to every tube, chord, and hose hooked to Logan.  Brad and I took sleeping shifts.  He laid with him while I slept and then he went back to the Ronald McDonald house in the middle of the night and I got to snuggle up next to him.  He was absolutely miserable yesterday.  After they placed his new tube he refused to move a muscle.  He wouldn't even move his head once he found a position he was comfortable in.  They wanted him to get up and move around so he could breath deep.... yeah right.  He wouldn't eat or drink let alone let anyone near him to touch him and make him move.  He was miserable.  He was scared, and I am sure just plain sick of pain. The doctors back in the CCU (step down unit) were a little more sympathetic than the ICU docs.  In the ICU they were barely giving him anything for pain because they wanted him moving not just sleeping.  When we got back to our room and the doctor here saw how miserable he was he let the nurse give him morphine through the night to help him sleep and relax.  I went to bed feeling so defeated.  Like we were starting all over in the recovery.  Just the day before he was playing with toys and one day away from discharge and now he wasn't eating or drinking again and was in so much pain.
This morning a new person from the surgery team came to talk to us and said Dr. Spray had looked over his morning x-ray and numbers and wanted the tube pulled.  This surprised us because we were told yesterday it might need to stay in 48 hours.  Dr. Spray said he was confident that is was only air bubbles that caused the lungs to collapse and that no damage was done to the lungs themselves (like a tear or hole in the lungs).  We wouldn't let her touch him until we had talked to the attending on the floor and she called to confirm with Dr. Spray.  Everyone on the surgical team is walking on egg shells around us now.  I made myself VERY clear about our feelings of how things happened.  Unfortunately I know things don't always go perfect.... it is just when it is your child it is hard to not want to blame someone.  I will say this though.  The team of attending doctors were ready for anything, and they took care of a scary situation without panicking us (even when they were all a little panicked).
So they pulled the tube this morning.  They gave Logan some versed (a medication that gives you a little bit of an amnesia sensation so he won't remember it) and he was like a new kid.  He would finally sit up and he started acting all funny and loopy from the med. 
What a freaking ROLLERCOASTER ride.  Logan is done with the hospital.  He is done with ouchies and meds and tubes and chords.  I think now that he no longer has any tubes in him they might discharge us to the Ronald McDonald house tomorrow (it is less than a mile from the hospital).  And then we can come in for follow-up before we come home.

To show just what a rollercoaster ride these last 3 days have been all these pictures were taken in a 48 hour period.

Playing great on Christmas
  Racing through the hall on McQueen Christmas night

The morning of the 26th. 
They were actually surprised at how good he looked for what was going on inside.  This is usually the problem with Logan, he doesn't show on the outside the absolute chaos going on inside of him.  I know people will comment all the time that he doesn't "look" sick. (Me on the other hand I know I look like a wreck, I didn't even have a chance to brush my teeth before all this happened.  Why they do everything so early in the morning at hospitals is beyond me). 
 The team was all scrubbed and ready in his ICU room.

They let me hold him until the last possible moment, and then they let us wait outside the door.  They didn't fully sedate him because they needed him to be able to breath on his own.

Such a drastic change in such short time.  He was so miserable.

We tried to get him to blow bubbles or the wind mill, but he just was not having it (I didn't blame him).

I left his side long enough for a shower yesterday, and as you can see he wasn't about to let me leave him more than that.  He had a grip and wasn't letting go.  He would wake up screaming or thrashing if one of us wasn't in the bed with him.

This morning after the tube was pulled he sat back up and played with a punching balloon.

And then got really loopy from the meds and couldn't sit up on his own anymore.  He just tipped right over!  As you can see we were watching him close and anticipating this.  We had protected him with pillows on the hard bed rails.

By the afternoon he was back to the playroom trying to play video games that Brad and I have no clue how to play.
What a ride we are on with this little boy.  We aren't joking when we say Logan likes to do things his own way.
I have tried to find something positive to make of this whole situation.  Here is what I have come up with...
1. Logan is an amazingly strong little boy who continues to just keep everyone on their toes,, and likes to leave an impression.
2. I really feel like the Spirit works through people in different ways and even if I didn't recognize it at the time, I know it was our Heavenly Father that helped us know something was wrong yesterday and we got it taken care of in the fastest time possible before it caused permanent damage.
3. Logan told a world renowned surgeon to move out of his way (When Dr. Spray came into the room he stood in front of the TV that Logan was watching.  Logan got mad at him and told him to move).  The entire medical staff said Logan is the only person that could have gotten away with telling Dr. Spray what to do.
4. Prayer works. In all the chaos I sent a quick text to our parents and my sisters to pray.  I know they had anyone they knew praying for him.  We felt those prayers.
5. He continues to be our miracle.

Thursday, December 26, 2013

Back to the ICU

This morning could go down as one of the scariest we have ever had.  It all started out exciting... Logan was going to get his chest tube pulled.  That meant HOME was within our reach.  The doctor from the surgery team came to pull his chest tube (not Dr. Spray this is usually done by a Resident or NP).  Pulling chest tubes are normally a pretty minimal thing.  We gave Logan some pain meds right before and it should have been done in a matter of minutes.  I was alone with him (it was early) and I held him while the tube was pulled.  Then I watched as the doctor struggled to get the hole closed where the tube was removed.  I think skin had grown over the stitch that was made to be pulled closed.  This is where I get a bit angry.  The doctor was not prepared for things to not go perfect.  He had to leave the room to get a different dressing to put over an open hole in my sons chest.  I don't know if the doctor is to blame, or if Logan took a breath at the exact wrong moment when the tube was pulled, but everything that could go wrong went wrong.  The doctor patched him up and left and Logan seemed okay for all of about 5 minutes.  Then I could tell something wasn't right.  His breathing changed and he was miserable.  I called for the nurse she checked his respirations, HR, and sats and thought all looked well.  Brad arrived and both of us knew something wasn't right.  I called again and she got the doctor to come (the attending doctor on the floor who we love, not the guy from the surgery team).  Within minutes our room was full of more doctors than I could count.  They did an x-ray and air bubbles had entered his chest cavity when the tube was pulled.  This made both of his lungs collapse.  (We didn't learn how serious it really was until a few hours later).  I was so impressed with how calm the attending doctor stayed.  She had control of the room and had the room set for worst cases scenario (having to puncture a hole to release the air).  They were having a hard time getting in contact with Dr. Spray, Logan's surgeon, because he was already in the OR.  I held him while he struggled to breath (he was put on a high flow of oxygen) he had 2 x-rays and we were wheeled together on the bed down the hall to the ICU.  Dr. Spray met us in his room explained that they needed to insert another chest tube (a different kind in a different place) to get rid of the air bubbles.  When they had me sign consent I said I would only sign if the same doctor that took out the tube was not allowed to touch him again.  They prepped his ICU room and they were able to do the procedure in the ICU.  Brad and I got to wait outside the door the entire time. 
Now we sit in the ICU and it feels like we are starting over.  They tell me he will feel better tomorrow, but right now we can't get him to move.  He hurts.  Yesterday my boy was able to play with all of his toys, and now he is miserable again.  I think he is feeling defeated.  Like really what else are you guys going to do to me. 
This new chest tube has a suction machine on it that pulls out the air bubbles and then somehow helps the lungs re-inflate.  The x-ray after the procedure was already a lot better.  He is still needing oxygen and like I said is still in pain, but he is stable.
Crappy, crappy set back.  Brad and I have been so worried about the chest tube being pulled the past couple of days.  We thought it was because we were skeptical of the fluid maybe not being completely done draining, but maybe this is why. Maybe Heavenly Father was preparing us for this.  Who knows, but I hate that it had to happen to my son.

Wednesday, December 25, 2013

Merry Christmas

We had a virtual Christmas this morning and were able to watch Ashlyn and Tanner open their presents from Santa, and they watched Logan open some of his too.  It was great.  Ashlyn has face timed us at least 6 times this morning to show us each new bracelet she has made with her rainbow loom, and Tanner is driving his remote control car up ramps on the couch and being a crazy 6 year old boy.  It did my heart good to be able to see their joy.
As we are far from home I was reminded from a friend that the first Christmas was also spent far from home in a humble stable and there was still joy and peace.  I have thought about this all morning.  I am grateful for my Savior and his love and life.  We too feel joy and peace today.  Ashlyn and Tanner are happy and Logan is making progress.  This is the best gift we could ask for.

Logan was so excited to open presents with no strings attached... he didn't have to take any meds or do anything that gave him ouchies to get the present.  He was spoiled by the hospital.  I can not believe how many toys they were able to give each kid.
Santa left this present under the tree at the Ronald McDonald House for Logan.  Brad brought it with him this morning.  Only Santa could have known how much fun Logan had playing the little guitar the other day to know he would want his own.  All morning he would make me shake my head and dance to Rock and Roll with him.
Word is out that Logan likes Cars!

A highlight of our morning was this sweet therapy dog named Tugger that came to visit.  I have never seen such a big dog be so well mannered and sit in a chair.  He just sat in that chair and let Logan pet him.  It was so sweet.  We face timed the kids to show them our visitor.
We spent Christmas Eve eating ice cream for dinner and watching Toy Story. 
Logan made a friend who likes cars as much as he does.  We have met them in the playroom the last couple of days and the boys will hobble around and try to play together.  Logan has had a really hard time sharing his toys though.  Who is surprised.... I will be the first to admit he is spoiled!
His friend was able to go home yesterday... we are only a few days behind him we hope (he was recovering from the same surgery). 

Logan made this little guy with the OT yesterday.  He is getting pretty good at doing things with one hand.  I wonder when he finally gets his IV out how long it will take him to start using his left hand again.

We made huge progress with meds yesterday.  We switched pain meds to chewable tablets instead of liquid and found a few more ways to get them down.  (Like sneaking them in while eating skittles).  He likes getting out of bed and choosing his own prize too.... the prizes are working to motivate him again.

The wall of our room decorated with pictures from the kids and Logan's drawings.
We are still waiting for his chest tube to stop draining.  It is decreasing every day and that is exactly what we want to see.  We hope that means it can come out tomorrow.... that is one step closer to home!

Monday, December 23, 2013

Our Day in Pictures

I knew we were in for a long day of keeping a 3 year old entertained in a hospital when Logan woke me up at 3 a.m. and wanted to play with play dough.  I could not convince him to go back to sleep so we finally compromised and watched Cars 2, but then he would get mad at me if I closed my eyes.... Oh Joy.  I ended up just spending the rest of the night in his bed with him.  He is really needing that extra security and comfort.
On the docket today with physical therapy was stairs.  They wanted him to walk up 3 stairs and watch that Brad and I knew how to help him without hurting his healing chest.  Logan ended up walking the entire flight of stairs and then kept going and walked another flight of stairs.  I might have teared up a bit seeing this.  Logan has never been able to climb our stairs without taking a break or being completely winded at the top.  Today his muscles were weak, but cardiac wise he was so strong.  It was awesome.

We were trying to tell him he could walk down the stairs now, and he said no and went to walk up the next flight!
I am so excited for the things this little boy is going to be able to do.  There is going to be no stopping him.

Music therapy today was adorable.  He sang "You've Got a Friend in Me" from Toy Story while strumming the ukulele.  I wish I knew how to post the video.  He rubbed the skin off his finger he was playing so hard.  He loved this.

I don't think I need to explain why a pair of pants would need to be so contained.... lets just say you could smell the stink from our room down the hall. (At least things are finally moving again)!
Brad and I had to take a CPR/Choking class.  I just renewed my CPR certification a few months ago, but I will take refreshers whenever I can.  I pray it is something I never have to use.  It is a little un-nerving when they refer to the manikin as your child though.. it really makes you pay close attention.

We loved his nap position today.  He is finally able to move his body on his own, he loves wrapping his legs up!

Vitals were taken in McQueen tonight.

And this has been our battle of the day.  Taking meds by mouth.  He doesn't want ANY of it.  Even the most insane amount of bribery and toys couldn't get him to take Tylenol.  This is the one thing Logan has figured out he has control over, and I have a feeling it is going to be a huge battle.  We got away with sneaking some crucial meds in apple sauce, but I think he will catch on to that too.  He is still able to get some meds through his IV, but if we ever want to come home he needs to take them by mouth.  Any tricks???
From a medical standpoint he is holding steady.  He is draining less, and we hope to keep seeing that trend.  He was negative in his input vs. output yesterday so we aren't sure if the decreased draining is because he was too dry overall, but we should see more tomorrow if this is still a downward trend.  Let's keep our fingers crossed.  The doctor referred to this part of the recovery as the tedious part of the Fontan recovery.  He is stable, and cardiac wise looks great, we just need him draining less.
They are less worried about  his fenestration, they say it has flow though it so we most likely will not have to visit the cath lab.  It is now just waiting for that chest tube to come out and then making sure the fluid stays away!