Playing Doctor

We had another relaxing weekend at home. The weather could not be more perfect in the desert and we are definitely enjoying our last few weeks before spring. I ran a few errands while Carson watched the kids and let me just tell you, the stores sounded like a symphony of coughs. I won't be taking Owen out in public places for at least a few more weeks!

Tonight we had my family over to celebrate my sister's 33rd birthday. You can tell that Owen is feeling better because my family room looks like a tornado ran through it. Toys. Everywhere. Gigi got out the doctor kit and wanted to give everyone a full checkup. Then Owen turned the tables on her. It was so cute to watch him play doctor because he's just starting to really get into imaginative play. Unfortunately, doctor play is the one that he feels most comfortable with since it has been such an everyday part of his life.

First he took Gigi's blood pressure.

I love the look on his face here. He looks like a concerned nurse as he holds the cuff and pumps it up. Classic.
We have a bunch of stethoscopes laying around our house and he knows just what to do with them. He was listening to Gigi's heart and makes the "whosh.. whosh.. whosh.." sound that he hears on the echo machine.

Then onto his favorite part of the visit. He couldn't wait to give Gi her shot! She acted the part of the patient perfectly and Owen broke down in giggles.
I'm pretty sure we have a future doctor in training. He is definitely getting an early start in the medical profession. Some kids start out with little league, acting classes, or dance classes... Owen is getting a crash course is all things medicine.

Speaking of medicine. We have a busy morning at Cardiology on Tuesday, including another echo. I'm anxious to see how is ticker is doing (almost 3 weeks) post op.

Post Op Day 14

I am amazed that just two weeks ago, Owen had open heart surgery. It's incredible how quickly he is recovering. He is feeling a little better each day and last night he put weight on his legs a couple times. That was pretty huge for him.

On day 4 post op, the nurses and attendings said they like to see the post op patients up and walking around. It was a punch to the gut. Owen wanted to do nothing more than sit up in bed for 15 minutes here and there. I had to quickly remind myself that this is Owen we are talking about. Mister laid back who rarely is on the move. I explained to the docs that he just started walking three weeks prior to surgery and how I wished that he had the energy to get up and walk around. So when Owen wanted to pull to a stand last night, even for a few seconds, I was thrilled!!

Owen has been a bit emotional lately. I know it's perfectly normal for post op patients to have changes in behaviors and so I am just taking it as it comes. Little things will set him off and his eyes fill up with tears. It's heartbreaking.

Another thing he's dealing with is not sleeping soundly. He talks in his sleep "no ouchies".. "leave e alone".. "mooovvveee over"... and he tosses and turns a lot. I wish I could tap into those dreams and sprinkle them with happiness.

I know that these things are normal and they will get better.. just in time for his next surgery. Ugh. I know it could be so much worse and we are grateful that it's not. He's doing great considering what he has been through.

Puking has been another small obstacle along the recovery path. Owen is still not tolerating his full feeds and when I go up (ever so slightly) he pukes. I called GI to make an appointment but they can't get me in until May. I'm not kidding. Owen's pediatrician sent a script for Prevacid to help with the reflux and said to stay away from her office because it is not pretty right now.

We are looking forward to a great weekend with lots of rain and a little sunshine. We'll hit up Redbox in a bit and maybe work on some Easter crafts!

Stitches and Xrays

Owen is post op day 13. It's been a rough one. Owen had an appointment at Dr Pearl's office to get his stitches removed from her sternum. I knew that this was going to be a fight, because Owen has had enough! Dr P. is Owen's surgeon from Phoenix Children's who did his first two open heart surgeries when he was a little guy.

Dr P. was finishing up rounds at the hospital, so we got started with his PA. She looked at the stitches while dodging Owen's kung fu protective moves. All while I held him down on the table. I ended up calling Dr Hanley's office at Stanford to figure out where these stitches were anchored and where to pull from. I handed the phone to Dr. P's PA and I heard .. "clean the area well with iodine".. "cut sutures close to the skin".. "pull fast".. "it'll only feel weird, not too painful"... "it is one big stitch and it is anchored to itself, inside his chest."

As soon as she got off the phone, I said "we'll wait for Dr P." He had just walked into the office.. what timing. We caught up briefly and got Owen on the table. I pinned him down and sang "Twinkle Twinkle".. man he's going to hate that song now.. and Dr Pearl cut and pulled. Owen's back arched in pain and then we were done. That was brutal!! He was in his stroller within seconds.. his happy place.

Dr. P and I caught up on surgeries and he asked if Owen would be having his Fontan at PCH. I told him I was nervous to do it anywhere besides Stanford because if something went wrong, we have a great transplant team there to take over. As of 2010, there is a pediatric transplant program in Phoenix, but it's too new. That scares me.

After we bolted out of Dr. P's office, we walked over to the hospital. We waited in admitting for an hour before going back to radiology. The chest xray went quick and Owen says "cheeessseee" to the machine. He said his "heart happy!" Good to hear!

The big white cloudy part that takes up the majority of his chest is his heart. Below that is his tummy.
I love the side view because you can see the wires holding his sternum shut.

Here is a chest shot of Owen after the stitches were removed. I swear I give him baths all the time, but he still looks so icky. Lots of goobers and sticky stuff that he won't let me wipe off.

On the way home, I called our NP at Stanford to give her a little update and to figure out our next plan of action. She said Dr Rosenthal wants to see Owen in the next 4 to 6 months to discuss the Fontan. Until then, they want all echos sent over from Dr Stock.. our next one is on Tuesday.

I told her that we'd like to come back to Stanford in about 4 months (end of June/early July) to do a pre-op workup. She's pretty sure they'll want to do a cardiac cath and we'll meet with Dr R and Dr Hanley at that time to make the best decision. Then we can schedule surgery for a month from then. She said that was a great idea. I'm full of them. :) She'll get back to me next week and we'll set the dates.

Owen has been fairly happy. Tired. Weak. Not doing much physically. I have to keep reminding myself that he only had open heart surgery 13 days ago. He just look so great!

This is his newest face that he started making while in the hospital. As if closing his eyes will make us all go away. I suppose it sometimes works. He's off in dreamland right now and I just hope he's not dreaming of his mommy holding him down and singing "twinkle twinkle" to him. Poor guy.

I have an update on our favorite little girl soon. She has been such a champ through all this! Owen has been moody and she just goes along with it. She hasn't had a whole lot of homework lately so she's been getting lots of chill time. She has no extracurricular activities right now and she prefers it that way. I'm not a fan of overloading your kids with extra activities, but one or two is healthy. She's been asking to do karate and cheer of all things. Spring break is almost here (where did the year go?) and so we'll do some trial classes and figure out what she wants to do.

I should probably go do a load of laundry or rotate the dishes so that I can say I did something around the house today. Thanks for all your feeding advice in the last post. We do have a feeding pump that I love to use at night but during the day, it's nice to not be attatched to anything. Except for oxygen of course. I am going to take it really slow and just increase volume. Slow and steady wins the race!

Feeding Question?

Owen is 30lbs. He lost almost a lb while in the hospital and now I'm trying to get him bulked up for his Fontan. I spoke with a nutritionist at the hospital and she calculated Owen's calories and said he should be getting around 1400-1600 calories a day.

No biggie. We have the Gtube.

Here's where I am scrambling. Owen has a low tolerance for volume. He has always been a puker, and I finally found a balance. For the last year, I set the timer every 30 minutes from 8am-10pm and feed Owen around the clock. It's exhausting.

I am trying to figure out another way. I don't want him strapped to a feeding pump. I have never tried feeding slowly through a syringe and wouldn't know where to start. Do you just fill up a 2oz syringe and let it drip? Or do you push it through the syringe slowly? How much volume can your kids handle and over what period of time?

In a perfect world, I would love him to tolerate a full meal over an hour time period. Give his belly time to empty and then he would be hungry enough to orally eat before his next meal. I'm just trying to grasp onto some kind of hope that we'll lose his Gtube before he gets to college.

Thanks for any input you have.

After he heals up from this surgery, I want to start encouraging the oral feeds a little more. I have focused so much on walking, talking and keeping him alive. It's so hard to find balance.

I am double lame because I have no pictures from today. Kamryn's hair is disheveled after her morning shower and she's in cozy sweats. Owen is napping in his diaper and has stitches hanging out of his chest. There's a visual.

I've got to get back to getting my tax docs in order so we can file tonight. Crossing my fingers for a refund.

Relaxation and Healing

We have had a lazy weekend. Movies, long afternoon naps, a whole lotta relaxing and healing.

Owen is post op day 10 today! I have been giving his motrin/tylenol around the clock and have finally got his pain under control. He has started to get down a play a little this weekend, but no standing or walking yet. He has been sleeping and laying in bed alot. His reserves are still pretty low and so we are giving him all the time he needs to recover.

Kamryn is in heaven this weekend. She loves to hang out around the house on the weekends and relax. I don't even think she has changed into normal clothes, just PJ's to PJ's.

Carson has been helping out and running errands. Owen can't go out in public for a few weeks, so he's been hanging out with either Daddy or I, while the other gets the errands done.

Tomorrow is President's Day. Kamryn has to write a report on the 2nd President of the United States. I admit that I had no idea who it was. She told me "John Adams and you should probably never consider home schooling as an option." In all honesty, she's right! I don't know how I got through the school years, other than with my good looks and charm. I kid. I think I just did a lot of extra credit and smiled a whole lot!

Happy President's Day and maybe I'll learn a thing or two about John Adams as I help Kamryn do research for her report.

Post Op Cardiology Appointment

Owen had a post op cardiology appointment this morning. It has been so long since we've been down to Phoenix Children's. The new hospital is done on the outside.. just like that. They were just breaking ground last time we were around.



We ran into NP Schaffer at cardiology and she hasn't seen Owen since he was just a few months old. How time flies. We also ran into one of our favorite nurses who used to work out of the east valley office, where we normally go. It's always fun to see familiar faces.



Dr Stock checked out Owen's post-op echo and said "WOW!" Owen's successful valve repair and recovery are really amazing. He is still on his super human doses of medications and we'll leave them for now. I am playing around with his diuretics at home to find a balance, but I think I found it. Dr Stock sounds confident that Owen will be a Fontan patient very soon! That is HUGE!!



For those of you that don't know... there are three palliative surgeries for Owen's diagnosis of HLHS. Owen had the first surgery at 7 days old, the second at 3 months, and the third is the Fontan. Owen has never been a candidate for the Fontan, which is why we were led to Stanford two years ago for transplant. Over time, his pressures have significantly dropped. As of September, talks of a possible Fontan were back on the table. In December, we met Dr Hanley and had a cardiac MRI done to further evaluate. If this valve repair is successful (and it is!) AND Owen's heart function remains only slightly decreased, then the Fontan will happen!



We will watch him closely through echos and a possible MRI or/and Cath in the next 4-6 months. It appears from post op echos that his function might be slightly better, which leaves me speechless. If things continue on this path.. then Owen will have the third stage surgery (his 4th) in the coming months!!



I had a lot of free time to talk to the nurses while at LPCH this past week. I picked their brains about post Fontan patients to get an idea of length of stay, how they recovered, ect. They said the chylothorax is what keeps them in the hospital the longest. It is not uncommon after the Fontan procedure and is basically fatty pockets of fluid around the lungs that can only be drained using diuretics and chest tubes. Owen dealt with this for 3 weeks post Glenn and it was not fun! They put him on a fat free formula/diet for six weeks following.



This leads into my question for Dr Stock today... what if I put Owen on a fat free diet PRIOR to the Fontan? Will it help decrease the chance of him developing Chylo or will it at least decrease the amount of fluid buildup? He really didn't have an answer but said that is something to really consider. He is going to look into it and ask around. Has anyone tried this or asked their cardiologist?



Owen still has a few sutures around his sternum that need cut and pulled out. The surgery team at Stanford said they pull them on day 11 post op. Since we are 800 miles away, they said to figure it out when we got home. Dr Stock is not the guy to pull sutures from Owen, so I walked over to Dr Pearl's office and set up an appointment for Wednesday. Dr P was Owen's surgeon for the first two surgeries. He's such a cool surgeon and I'm sure he won't mind pulling out another surgeon's stitchwork.



After suture removal, we'll head over to the hospital for another chest xray to make sure there aren't any pleural effusions building up in Owen's lungs. Then he'll have another echo and visit with Dr Stock on March 1st.



Whoa. That was a lot of medical talk.



Owen is healing up nicely.. still tired and SO sore. He's only 8 days post op so that is to be expected. I'm sure I'd still be in the hospital with a morphine pump if it were me.



It's nice to be back in a routine at home. I missed packing lunch for Kamryn and dropping her off at school. Owen wakes from his nap and says "time to get Bobo!!" His only outings are car rides and doctors' appointment for a few weeks until he heals up.



I missed having a warm body in my bed and a quiet house. It's good to be home.

We're Home!

We are home.

Owen had a pretty invasive open heart surgery on the 10th and we are home on the 16th.

Amazing!

The crew at Southwest were so accommodating and helped us get all our items on the plane and off. Owen had two seats to lay on the entire flight. He is having a hard time sitting up on his own because his sternum is so sore. If he were a strong walker, like most 3 yr olds, I think he'd have an easier time getting up and down.

Daddy was at the airport waiting for us and it was a great reunion! We came straight home and Kamryn was here with Auntie Sussy, Rylee, Connor and Tatum. They had decorated the house with posters, balloons and streamers. Justin brought pizza home with him and it was SO nice to not have to do any chores. Kamryn was well cared for while we were gone!

Owen took his first real bath in 6 days and I'm sure it felt good. We haven't figured out the cradle hold yet, so everything is difficult. I had to climb in the tub.. then Carson had to scoop him down to me. He leaned back against me while I washed him up. We had to learn how to care for his ouchies.. which I never had to do before. We've always been in ICU for 30 days post op in the past so he was pretty healed before we came home. This was a new experience.

I changed his dressings on his chest tube site and under his neck and then he settled into our bed. He asked me to turned ALL the lights off so it's pitch black and is watching his movie while cuddling Kamryn.

Now the real healing will begin.

We have a followup appointment with Dr Stock early on Friday. I'm anxious to hear his opinion of the valve repair and to see what it's doing to his function. I ran into Dr R. (Owen's Stanford Cardiologist) in the cafeteria this morning and he said that Owen had a pretty amazing repair! Music to my ears! He said he would stay in close contact with us over the next 4 months and hopefully Owen will be back for the Fontan (the 3rd surgery for single ventricle kiddos).

I've had tons of email and comments with questions. One of them is whether Owen will always be on oxygen. I sure hope not. After the Fontan procedure, he should ditch the O2. Should.

Another question was How life is in the hospital? It's sleepless nights. It's long days. It's holding your child down for procedures (iv removals, pokes, ect) and telling them "sh sh sh.. it's gonna be okay... Momma's here." It's praying you get an attentive nurse who makes your child feel at ease. It's finding a place to sleep whether it's in a chair or leaving your child's side late a night to go to a hotel and then feeling guilty about it. It's seeing another family lose their child as you watch from the other room and you ache for them. It's advocating for your child and teaching the doctors about them. I pray that no one has to spend time with a child in the hospital. It's heartbreaking. You can't walk into a children's hospital and come out feeling anything but pure gratitude for everything in your life.

I'm off to cuddle my family. Goodnight.

Discharged!!!

We are sitting at the airport waiting for our flight home. Owen is napping in his stroller and boy have we had a long day!!

Owen was discharged at 9:30 thanks to some seriously awesome nurses!! We ran by the RMH and paid our dues and then hit the road to the airport. I had no help when I returned my rental car but I made it.

I carried 2 huge duffles, a car seat, a large rolling suitcase, Owens diaper bag, Oxygen concentrator and of course, Owen in the stoller! We had to go from the rental car garage, across the street in the rain, and into baggage check in. We made it and I was relieved to get rid of half my load.

Now we are sitting at our terminal, charging the concentrator. Owen is sleeping peacefully and our plane will probably board in the next 30 minutes. I am still amazed at how well Owen has recovered. His recovery is far from over as we adjust his meds, heal up his chest and allow time for the bone to heal. I can't pick him up under his arms for six weeks.. so we do the cradle hold. Not so simple on a 3 yr old.. try it sometime! :) I'm sure in a week, we'll have this all figured out.

Owen keeps saying "HOME.. Dada, Bobo... HOME!!!" He is very excited!

Yesterday.. Victoria and Justin came by to visit us at the hospital. They brough goodies for both Owen and I. They know hospital life like nobody's business as their sweet Moriah spent almost a year in ICU at the same hospital. You can find their blog on my sidebar.. under Moriah! Their story is a brilliant one and we can't wait to meet Moriah sometime soon!
Owen spent his days playing in bed.. not a whole lot of activity going on. His scar is healing so nicely.
Here was our room getup. Owen sure had a gret relationship with that TV. The little one next to us was so sweet and didn't cry but a few times. We pray she gets her heart soon.

It feels great to be going home. I'm sure our reunion with Kamryn and Carson will be priceless. Thank you for all your prayers!!

D. Day Plans

We had a LONG day today. Owen was very particular on who could come near him. The surgery team pulled his Pacing Wires and so all we have left are two last iv's to come out at Discharge. Do I dare say it?

I tried to break us outta here this evening, but they wanted to monitor him on the lower dose of Diuretics before sending us home. Owen had his discharge echo today. The charge nurse took me on a tour of other "room options", but I decided to stay put. The single rooms are full of sick cardiac little ones and the doubles are not any more appealing anywhere else. I figured it's one more night. We can do this. All of the nurses have been amazing and the other family hasn't been in today at all. So quiet time it is.

Owen and I took a long walk in his stroller today and got outside. He's been a lazy bones and exhausted from lack of sleep. Tonight he had a shot of Benadryl and will hopefully sleep well. I ran over to the RMH and grabbed all our luggage. Our hospital room is cleaned and packed too. I am ready to go!

They promised that because I was so patient about not being discharged tonight, they would get us outta here first thing tomorrow morning. A chest xray is scheduled for 6am. Then the nurse will get the ok to pull his last two iv's. I'll dress him and we will hopefully be on our way to the airport!!

I have lots of pictures from today and we even had visitors... The Neilsen's came to visit! I'll post again when I can.. hopefully in the morning while we're counting down the minutes. Owen keeps saying "go home!" "Buh Bye!" When we were out walking I asked him if we could go back to his room and he said "NO... Momma and Dadda's Moom... HOME!!!!"

I am amazed at his quick recovery. I am anxious to see Dr Stock on Friday morning to find out what he thinks of his pre-op and post-op echos. The cardiologists on the floor don't know Owen's heart well, so they aren't the best to ask for a report on the old vs new echo. I'm curious to see how much the valve has improved and if it's affecting his right ventricle function.

Night. Pray that nothing gets in the way of us and our plane home tomorrow!

Post Op Day 5

We had such a sleepless night. At around 11:00, our night nurse did his best to make the room a restful place. The room mate's family left around 11:30. The nurses said that's common for them.. they are not here all day, but they come in late at night. They're young.. such is life.

Owen maybe slept a total of 2 hours all night, off and on. The lights, constant sound of the Berlin Heart machine, and vitals kept him from resting.

Owen is so irritable today. Anyone that comes near him he says "go away.. leave me alone!" They ask if they can listen to him and he says "no! later." I think his cooperation for this stay has expired.

It looks like we will be here one more day. The only plan for today is to finish up discharge stuff. Ger rid of the pacer wires, get a discharge echo, change his dressing, and decrease his lasix just a bit. They came in this morning to poke him for labs and I turned all Mama Bear on them and said "NO WAY ARE YOU POKING MY BABY!" It turns out, they didn't need the labs anyway. Go me.

I spoke with the charge nurse today and requested another room since we will be staying another night. She was very understanding. We'll see what happens. I let the cardiologists on call know that if we can't get him moved, we need to be discharged this evening to the RMH.

Either way. It'll be good to give Owen another night to heal and REST!! He so desperately needs sleep and obviously, so do I!!

The post where I get to vent...

I am patient. I am flexible most of the time. Tonight, I have thrown it all out the window.

Owen was put on the floor in a "shared" room. We were the first ones here so we got the window side of the room. They brought in a little sweetheart with a Berlin Heart to be Owen's roomate. It's been crazy!

Loud. Lots of nurses chatting. The door to the room has to remain open and the lights ON and a nurse has to be in here 24/7.

I've been ok all day. Cranking up the volume on Owen's television so he can hear it over the other distractions.

It's been okay until 9pm. Our neighbors' family showed up to wake the baby and play!! Lights ON. Lots of family members chattering, taking pictures and now the nurse is doing her dressing change. You have NO idea how loud it is in here. Owen is trying to sleep but is tossing and turning. I don't know how he can even shut his eyes other than he is totally exhausted.

The nurse said he'd turn down a couple lights in a while when he was done. There are no visiting hours, so the other family can chatter all night. I am exhausted. I am done with hospitals.

If we had a private room the door would be shut, the lights would be off, and we'd both be resting comfortably. If we had a private room.

Ok. I'm done venting.

I just broke down in tears of frustration when the cardiology fellow came in. I told her that we have to be discharged tomorrow or they need to find us a private room.

My heart is sad. I'm sad that Owen can't get a solid nights sleep after such a long day! It's not fair. There are open single rooms available.. they are "saving" in case they get kiddos that need isolation. I NEED ISOLATION.

I'm really done venting now. I just have to post that I am human.. not superwoman, all the time.

Tomorrow will be a better day.

Post Op Day 4

Happy Valentine's Day!!!

Owen has had another great day so far! He had his chest tube pulled this morning, we changed his chest dressings and then the ART line was pulled. We continue to wean his oxygen and he's down to 2 liters. Acceptable.

We moved out of our room in CVICU and up to the cardiac floor. This is basically the place where we have one foot out the door. We were put in a shared room..ugh..but at least I have the window seat and am closest to the restroom. We are getting a roommate in a minute and she has to be watched 24/7 by a nurse. The positive to that scenario is that Owen will have a nurse watching him constantly too. You all know how general care works. We've only seen his nurse once in the last 3 hours. Cross your fingers we have a quiet new roommate and very little family and visitors. Owen hates commotion and noise. I'm also hoping they will keep the door shut because it is so LOUD when it's open. If Owen can't sleep tonight because of noise.. I'm gonna turn into the hulk momma.


Here are few pictures from yesterday and today...



This was just after we pulled his IJ line in his neck yesterday.. SO not happy.
He painted and sat up a little more at least.

He's very interested in his "shows" and pretty much ignores me all day. When I have to leave to run to the cafeteria or back to the RMH to do a room switcheroo, he just says "see u soon" and he's into the same movie when I get back. This age does have it's perks!

Here is a picture today after we pulled his tubes and lines. He was thrilled to ride in his wagon today so I'm pretty sure that darn chest tube was just giving him some trouble.
I'm going to run to the RMH and clean out my room and set up shop in a new room. We were originally given a room in the immuno compromised wing, but now we are moving to the cardiac wing. It's perfect timing to get the car seat in the car, and the luggage packed to go home. I might stop by Sprinkles for a milk chocolate cupcake .. it's Valentine's Day after all!

Successful Day

Owen had his IJ line pulled.. the one in his neck. That was horrible! They had to cut the stitches in his neck and pull it out and geez he was in pain! He hates tape being pulled back and I can't imagine having that on my neck. It feels good to be rid of it.

They wanted to keep Owen's ART line in one more day so they can draw labs from it in the morning. Then we can pull it. I'm pushing for the chest tube to get pulled too. Then he'll just have two iv's left.

The echo today looked a little better so we are confident we have the fluid off of him and we have his diuretics figured out. He is on all gtube medications, no more IV meds. He's off of Morphine and we manage his pain with a little Toradol and Tylenol.

Owen was excited for his wagon ride all day long. We finally got in the wagon around 6pm and he was so upset. He hated it! He kept pointing backwards and saying "bat to bed... my moom... night night... go home." He was just not digging it. We made it the shortest wagon ride ever.

We will definitely move up to the floor tomorrow. I'm literally begging for a private room. They have "the pod" up there and they have 4 beds in one room. I refuse to go there and will throw a tiny fit if they try to put him there. He needs rest and there is just no way to rest in that environment.

I don't know what would keep us here past Tue or Wed. He's eating, tolerating his Gtube feeds, on all oral meds, and on his home oxygen regimen. After these last iv's are out tomorrow and his chest tube is gone... there is no reason to stay. They'll do another echo on Tuesday morning to make sure everything looks good still, but I'm pretty sure we'll be flying back home before we know it. Dr Hanley said to plan for a 7 day recovery and I think we might beat that!

I'll post more tomorrow with a few pictures. We painted, colored, played iPad, watched movies and played with balloons today. Now.. it's time to climb in bed with my little man and snuggle. Night.

Post Op Day 3

Owen had another great night! This morning, we arrived at 6am and he was still sleeping. He woke around 7:30 and ate some bacon and eggs. Little niblets at least.

He got some versed and morphine so surgery could pull his LA line. It went through his chest, just under his chest tube, to his heart. He did great! The nurse changed all his dressing sand we cleaned him up. I changed out his Gtube while he was sedated..which is the best time to do it.

He's resting off the drugs and watching tv.

The plan for the day is to pull the IJ line in his neck, and the ART line in his wrist. He'd also get rid of the arm board on his right arm. That will be SO great!! He has an echo scheduled so we can figure out the diuretic doses. He's on all oral (Gtube) meds, no iv meds. We're going to be giving him tylenol for pain and continue Morphine as needed. The chest tube will stay until tomorrow morning because we want him moving to make sure we get rid of all the drainage.

The FUN part of the day is that he needs to get OUT of bed and moving. We'll go for a wagon ride outside and get some fresh air, which sounds good to me too!

He will definitely move to the 3West (step down) tomorrow. From there, I can't imagine them keeping him for than a day or two.

I continue to be amazed at his recovery! I'll update more later with some pictures from our wagon adventures.

Motivation

Today has been great in CVICU. Owen sat up a little and played with his cars. We blew some bubbles and he ate a little chicken. He's been comfortable most of the day and alert. He hasn't slept but 10 minutes the entire day. He is watching movies, watching cartoons and allowing his body time to heal.

We wish we could have joined all of the Arizona heart families and friends at Ethan's Run this morning. Krisi sent me this photo she took during the 10k. Which I have to say ... WAY TO GO to everyone that participated in the 10k. I don't know if I would have been that brave.

Owen was the six mile marker.. what a way to motivate the runners to finish the race!! I know that it would have pushed me to sprint that last mile seeing Owen's little face and knowing how strong he has been. If he can do this.. we can all finish a 10k!

We will continue to relax the rest of the day. Tomorrow will be a BIG day full of removing tape, pulling IV's and chest tubes. Not. Fun. At. All. It'll feel good to get some of those lines out though. I can't imagine a huge IV in my jugular. Owen doesn't even act like he knows it's there.

Post Op Day 2

Owen had a great night!!! He rested most of the early evening. He needed the rest as he had such a rough day. At around 8pm, he woke up and said "where Dada go?" I told him Daddy went back to the RMH and to get dinner. "Otay mama." I asked him if he was in pain and he said "no.. im otay." He really liked his nurses and so around 9:30, I asked him if it was ok if I went to get some sleep. "Otay mama, ni night.. I zuv u."

Could he be more sweet?? He has blown me away with his maturity and understanding in this situation. He's hasn't whined unless he's in serious pain and he asks for medication. As soon as he gets it he is calm. He talks to all the nurses so sweet. His night nurse said that he slept like a rock with zero sedatives or pain meds. He only woke up once when she changed his diaper and he said "tant you," and drifted back off to sleep. My heart is so full of love for this little man.

I dropped off Carson at the hospital this morning so he could spend a little time with Owen before he left for home. I ran some errands and did laundry while I could. Owen was sound asleep when I arrived at 8:30am. He woke up around 9:30 and has been watching cartoons and relaxing. I took this photo this morning while he was resting.

This is Owen's monitor that I have to convince myself is not there, otherwise I stare at it all day.

The top number is his heart rate.. the red number is his blood pressure.. the blue number is his RA pressures read from this IJ line in his neck (that goes to is heart) ... the turquoise is his oxygen sats (on 4 liters at the time)... I have no idea what the white number is for... the bottom number is his LA pressures read from his line in his hand (threaded to his heart). All of his numbers are perfect (for him)!!! The blue tube off to the right is his high flow oxygen tubing. The IV in his neck goes all the way to his RA to read his pressures and is used to administer Milrinone and Dopamine. Owen has two IV's in his right art, one peripheral IV and one is his ART line. The LA line goes in through his chest to his heart. He has pacer wires are in his tummy to his heart (preventative) and he has one chest tube that is barely draining.
The plan for today is to feed him again, which he is tolerating well so far. Wean him off of the IV meds (dopamine and milrinone) and get him on all oral meds. We'll manage his pain, but not sedate him so he can sit up in bed, eat a little and watch movies. Whoa this day has been flying by! His nurses have all been SO incredible... Owen is spoiled with the amazing care he is receiving.

Tomorrow, we will pull most of his lines. His chest tube will be pulled. We'll take him for a wagon ride and get outdoors. It'll be a more active day tomorrow. I am so in awe of how well he is doing at only day 2 post op!! It's incredible.

Kamryn is doing so well with everything back home. We talk every morning and at night. Last night she was asking about the Tricuspid valve repair and I was explaining it to her. She stopped me half way and said "are you talking with your hands? I can picture you telling me while doing hand motions!" She cracks me up. And YES.. I was talking with my hands.. I am animated like that. She is excited to see Daddy today and they have some fun plans for the weekend! She has been thrilled with her brother's progress and can't wait to see him.. obviously.

Ok. It's almost lunch time. Geez, time goes by so fast in ICU. It's been a great day so far!! I am already missing Carson and I miss Kamryn like crazy. We'll be home soon. I just know it!

A Few Setbacks

Owen continues to have issues keeping his oxygen saturations up. He sats are in the high 50's, low 60's. He has been sleeping the majority of the day, only to wake up in extreme pain. We give him an Morphine through his IV (instant relief) and he passes out.

He had an allergic reation to his blood tranfusion, which has never happened before. His entire body got splotchy. He broke out in rash spots and he was itching like mad. I put creme on him, while the nurse stopped the blood and gave him intravenous Benadryl. He is feeling much better now.

We had to use the magic of Versed (a sedative) to calm him down after his reaction to the blood. Then we had to pull back the tape on his chest dressing to allow the echo tech access to see his heart. If that wasn't bad enough, we had to pick him up and move him around for his chest xray.

The goal in everything is to try to figure out what is causing his horrible oxygen saturations.

The chest xray was great. The echo shows higher ventricle pressures, which is most likely causing the saturation issues. The higher ventricle pressures are caused because the valve was tightened and so the blood has to go through a much tighter area. Thus causing backed up pressures in his ventricle.

The plan is to increase his Diuretics to get more fluid off.

He is on high flow oxygen at EIGHT liters and he's satting at 74%.

We turned his Dopamine and Milrinone BACK on.

One step forward, two steps back. This is how it always goes and is to be expected. We're hoping to get Owen up and moving in bed soon. He has been in so much pain that he hasn't wanted to sit up. Read my last post for more updates. Ideally, he'll be up blowing bubbles, watching movies and interested in eating. That is the plan.

Rest. Get him to a more stable place. Watch him carefully. He'll definetly be hanging out in ICU another day... no step down unit today.

There is no rush in his recovery. He will do things on his own time. We are proud of how far he has come thus far.

Day 1 Post Op

Owen had a good night. He was restless, until the nurse gave him a touch of versed and closed all the curtains and doors. Then he slept soundly. I got back to the hospital at 6am and he was sound asleep until about 8.

He sat up and had a little water and a couple sips of milk. He wasn't too interested in breakfast, but if you had seen it, you wouldn't have eaten it either.

He had a dose of morphine and crashed.

The docs did rounds and said he was doing a great job recovering. They stopped his Dopamine and Milrinone drips and are working on switching to oral meds now. I started him back on his full blended diet.

Currently he is getting plasma and will have a blood transfusion shortly.

When Owen woke up at 10, he wanted a drink. He tried to drinking in his reclined position but was choking and I didn't want to risk him aspirating. I sat him up (carefully). It wasn't 2 seconds before his entire body spasmed in pain and he didn't breath for about 20 seconds. His sats dropped into the 30's. All the while, his nurse grabbed the morphine and got it injected.

It's been a little over an hour and his sats are still yet to recover. He's sating at about 65 now on 2 liters of oxygen. His norm is around 70 to 80 on a liter. The doctors say his lungs sound perfect and he's profusing fine. They are adding more IV diuretics to get a little more fluid off. He's not puffy in the slightest, but he's a little positive.

With the increased diuretics, plasma and blood transfusion.. he should improve a bit. He's had tylenol and morphine so he's resting peacefully now.

I cried. I cried hard. I felt awful for trying to sit him up and causing him any pain.

Just before giving him his tylenol, the nurse pulled his Foley catheter and the art line is getting pulled in a bit.

At rounds they mentioned the possibility of moving to step down today and out of ICU. That was before his desatting episode. As I type this, his sats are creeping back up into the 70s. I think we just needed to get a handle on the pain and get him resting.

Continue to pray for a smooth recovery. There are always a few bumps in the roads. It's part of the journey. We are so grateful that Owen is doing so well. I'm off to get some lunch and will update in a bit.

Post Op

Owen had a rough day, but he is being so brave. He was extubated this evening about 6pm. Way to go Owen! He has to remain NPO (nothing to eat) for four hours after extubation. The first thing he said when he was extubated was "chichen". All he wanted was chicken. We all laughed and promised him some chicken broth at 10pm! In the meantime, he gets to suck on a sponge. This is the longest four hours ever.

The morphine is managing his pain and he is resting well. He has his own nurse tonight and he is completely stable. After his 10pm feast, we'll tuck him into bed. As soon as he drifts off for the night, I'm going to go back to the RMH with Carson and get a decent nights rest. Tomorrow will be a LONG day because we are getting him UP and moving around!

We are so grateful for all his progress and I have no doubt that it's due to the many prayers for him today. That. and Owen is a rockstar! He hasn't cried yet and he's acting so mature. He's asking for medicine and telling us when he's thirsty.

Here are some pictures from today. The last one is post op and so if you have a weak stomach.. skip it.

Here he is pre-op... the drugs are doing their magic..
I had to include this one. Carson brought me some sprinkles earlier and I totally ate two of them. I might even eat another one tonight. I am totally a stress eater and today qualifies as stressful.
This was his room in CVICU. He's settled in with his medicine tree, vent and monitors. His nurses have been fantastic!!!

Here is a picture of Owen post op, prior to being extubated. He looks so great!! He's not puffy, his color is great and he has minimal tube drainage.

I haven't wanted to disturb him post extubation to take a picture, but there will hopefully be many pictures tomorrow. I hope to get breakfast in his tummy, take him for a little walk in the wagon and we'll watch a few movies. Daddy will be here one more day with us too.

Surgery is Complete.

Dr Hanley just came in and said the surgery went great!! He was able to repair Owen's valve. I can't even begin to tell you what a relief it is.

He said the valve leakage was much worse than anticipated. He was able to tighten the entire valve so that the Tricuspid valve leaflets now meet. On a scale from 0 to 10.. 0 being no leakage, 10 being the most severe.. Owen's leakage was a 8. It was bad. After the repair, he says it is more like a 3!

Prayers have been answered today.

No articifial valve was necessary. The next 24 hours will be critical.

Continue to keep him in your prayers for a smooth recovery. I'll update later today. We have about an hour before we can go up to ICU and see him.

Conversation with Dr Hanley

We just spoke with Dr Hanley at 10am. Owen's lines are in and he's ready for bypass.

Dr Hanley sat down with us and we talked about the surgery. He'll put him on bypass and cool down his body. He's going to do his best to fix his Tricuspid valve. When he's done with the repair, he'll take Owen off bypass and they'll do an internal echo of his heart.

He wants to see a significant improvement in his valve leak (little to no leak) and he needs to feel confident that the repair is strong enough to last. If not.. he will put Owen back on bypass and either tweak it some more, or he will replace his valve.

After talking in depth with Dr Hanley, we decided to go with a pig valve for Owen. It won't last long term, 5 to 10 years if we're lucky. The hard reality is that his heart may not make it that long anyway and he'll require a transplant. On the other hand, it may last another 20, and we will be looking at another valve repair in the future. On the upside.. Owen can just continue on Asprin as a blood thinner.

While the mechanical valve is a longer term option, we have to consider that Owen is a 3 yr old boy. The coumadin, blood thinner, would require daily pokes and frequent lab work. If he gets hit with a ball in the gut or falls on his head, we will constantly be concerned about internal bleeding.

My gut instinct says the pig valve is the best option for Owen at this time. My hope is that Dr Hanley will work some magic and we won't even have to worry about an artificial valve.

Owen is in Heavenly Father's hands right now and the confident hands of Dr Hanley.

We won't hear anything for another 3-4 hours. Please continue to pray.

Surgery Day

We arrived at the hospital at 6am. We went straight to pre-op and watched Cars while snuggling our little man. The nurse asked about his medical history. We gave him some happy drugs. Then, the anesthesia team wheeled him back to the OR. He said "it otay" and "love u"! He was chatting with the OR docs as he was wheeling off with them.

Carson and I are sitting in the surgical waiting area. Dr Hanley will come talk to us in a bit, before making his way to the OR. The OR nurse just brought us Owen's snorty and bink and told us he is fully intubated. He's getting his ART line in his wrist, his central line in his neck, and several more IV's lines in his arms and legs.

Dr Hanley, after speaking with us, will go to the OR and start the procedure. We'll keep you posted.

Thank you for your prayers!!!

Pre Op

We had an early morning at the hospital for Pre Op. Owen was amazing!! He stood on the scale for her vitals for the first time ever. His weight was 31lbs and was 37.5" tall. His sats were perfect at 80% on 1 liter. His blood pressure was beautiful, not as low as it often is.

Owen was so chill during his 2 hour echo. We started getting worried when the tech took so long and we started asking a million questions. Apparently, he was playing with the new 3d echo images and was being thorough. The EKG tech came in afterwards and it was beautifully quick.

We made our way to radiology for chest xrays and Owen giggled the entire time. The radiologist was pretty silly and it only took a few minutes. Sweet.

Another appointment was scheduled at the Cardiology clinic to speak with the surgical team and anesthesiologists. We spent a couple hours in clinic because we had a lot to talk about. The short story...

Owen has surgery at 7:30 am tomorrow! He is the first case of the day and for that I am grateful! Surgery will last at least 4 hours, but probably longer.

Dr Hanley will put Owen on bypass and attempt to repair the valve. They will bring him off bypass, see how he does and do an echo. If it's not pretty, they will put him back on bypass and Dr Hanley will then replace the valve. It could be long.

We have until tomorrow to decide if we are going to want a pig valve or a mechanical valve placed. A pig valve has only a 5 to 10 yr lifespan. A mechanical valve lasts a lot longer. The major downside to the mechanical valve is that Owen will be place on Coumadin (a blood thinner) and I will have to poke him daily to check his levels. Levels too high or too low are not good. A pig valve doesn't have the same clotting risks as a mechanical valve so he will only continue on 1/2 asprin a day. Long term valve with clotting risks, or shorter term valve?? Our biggest question for Dr Hanley is "how long is his heart really going to keep working?" If we don't expect it to last another 10 years, then let's just go with the pig valve. In reality.. we still don't even know if he'll qualify for the Fontan in the next six months and we'll be moving forward with transplant. It's a big decision!

Owen is going to be on the vent for at least 48 hours after surgery. They hope to have his chest closed, but with his previous two open heart surgeries, he had too much swelling to close the sternum. This is major surgery and we are messing with the main valve delivering blood from his right atrium into his right ventricle. We also need to be extra cautious that he doesn't have heart arrhythmias or heart block. If he does, we'll be looking at placing a pace maker.

We are scared. We are hopeful. Owen says he's going to "rot it" (rock it) tomorrow!! I know he will.

Our last stop of the day, 6 hours after we arrived at the hospital, was to the lab. Owen had to get a big set of labs drawn and he was NOT happy. We were heartbroken as he said "pease..no.." when the lab tech poked him. They got it on the second prick.. but he was so sad. If there weren't bad enough, we had to stick a urine bag over his trunk and get a urine sample. We got it all done and hopefully didn't traumatize him long term.

It appears he recovered well...

Uncle Rustyn (Carson's brother) came down from San Fran to hang out with us today. We went for a walk around the hotel and now we are chilling in our room waiting to go to dinner. Owen loves seeing Uncle Rusty and we are enjoying our last night with him before surgery.
I'm off to cuddle my little man. We appreciate all your prayers! I will keep the blog updated tomorrow as often as I can. They said they rarely update while in the OR, so I'm sure I will be pacing the waiting area going crazy. Carson is going to move our stuff from the hotel to the Ronald McDonald house..we got a room!!

Owen.. you are our hero and we know you're going to do so great tomorrow!

Kamryn.. we miss you and love you baby!

Family Photos -- Sneak Peek

Here is a sneak peek of our family pictures from yesterday! Rachael Earl took our photos and did a great job.. we really love them!
Neither of us in the background look too flattering, but this picture cracks me up!!
You can see Owen's little face saying "CRASH!" He is all boy!

We brought along "buzzwoody" and he kept saying "ride em' cowboy!"
Then he made buzzwoody dance like a puppet!
Kamryn is getting so big! She had a rough night last night so please keep her in your prayers. She is having a hard time with us leaving and Owen having such major surgery. It's a lot for an 11 year old to comprehend.
Rachael brought sparky red hearts for us to use in the photos...
Then Owen decided to tear one in half. This made for some great photos, because after he ripped his heart in half, he wanted to "fix it!"
So with a ew pieces of tape, he did surgery on his broken heart. I love these photos!!


Owen looks like he's doing some mad break dancing moves here! :)
Kamryn and Owen LOVE to spin "round n' round". These two have the best relationship and it just gets stronger everyday. This is such a fun shot!
Thank you Rachael. This photos mean a lot to us. I think family photos are so important, especially when our kiddos are growing up so fast.

On another note.. we are getting ready to fly outta here this afternoon. I should probably be packing instead of blogging. We got a call that there was a room available at the Ronald McDonald house, but our plane doesn't arrive until after the check in cutoff time. It wasn't meant to be our room. :)

Congenital Heart Defect Awareness Week

It's Congenital Heart Defect Awareness Week!!

Before the ultrasound when Owen was diagnosed with HLHS, we had never heard of a CHD. You always know that something could be wrong with your unborn baby, but how many people imagine that their baby could have a broken heart?? It's a terrying and mind numbing experience. All a parent wants in that moment is HOPE that their child will survive.

Nearly one in every 125 babies is born with a CHD. It is the #1 birth defect in America. This year alone, close to 40,000 babies will be born with a CHD. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome --> Owen's Defect
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects
Owen is our hero and a CHD survivor.

His battle is not even close to over. Owen continues to fight and will undergo not one, but two, open heart surgeries this year alone! His heart will not be repaired, but patched up until he requires a heart transplant in the future. He will forever be on medications, oxygen therapy and will never stop visiting his cardiologist regularly. Please consider becoming a blood donor, organ donor and spread awareness. There is no cure all, but with more funding and research, children born with CHD's will have a better chance of survival. What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.

This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)