Tuesday, August 1, 2017

This One's For You, Jack

Five years, six months and 21 days ago a single moment forever changed who I was. It was the moment I heard your first cry. They held you up and I saw your perfectly round little bald head and your sweet little puckered lips and all I could think was, wow. He's perfect. You weren't at all what I had imagined while I was pregnant. I guess I was imagining one of the babies from the diaper commercial because before you were born I kinda think all babies looked the same to me. But you came into the world and were so perfectly Jack from the moment I laid eyes on you. There had never been a Jack Aaron Odom before and there never would be another one. The first time I held you it was like I had known you my entire life and I couldn't remember ever living without you. You changed my universe the moment you entered into it. You made me a mommy and its been the greatest honor and privilege that God could have ever bestowed upon me and I thank Him for you every single time it crosses my mind.

I don't know how to explain what it was like becoming a mom. Its like someone flips on a light switch and illuminates a room that has always been in your house but you never knew was there. From the very first day, with all of the trauma and challenges that it brought to us, I knew deep in my soul that we were born for this, me and you, and this was only the beginning of our story.

On that day an army began to rise up in your name. You were this amazing little tiny person who was hooked to all of these machines taking nice long naps and minding your own business and all the while the world was turning upside down for you. Oh Jack, if you only knew.

People from all over the world, more people than I could ever count or try to recall began to pray for you. People lifted us up and placed us at the feet of the Father and in that moment, Daddy and I begged God to let us keep you. And He did.

When we took you home and you began to grow, every single breath you took was terrifying and wonderful to me. I never took my eyes off of you during those first few months. I don't know that Daddy and me even remembered what sleep felt like. But we didn't mind. You had shifted our world and where the sun and the moon used to be, now there was only you. You slept in a cradle beside my bed and at night, when you would finally fall asleep I would kneel in the floor between my bed and yours, slide my hand between the little bars on your cradle, grab your tiny little foot and pray over you. I prayed for God to make you better. To bring you through the surgery that was looming in the not-so-distant future. To heal you and give you a life after all of this. I prayed that God would let us keep you longer.

On the day of your first cath, we heard more bad news. "Worse than we thought." "Surgery sooner than we thought." "Not sure how to fix the problem." They were words we didn't even begin to know how to process. But we did what we knew how to do best. We prayed and we took you home and we waited.

On May 16, 2012 me and Daddy did the hardest thing we had ever had to do. We handed you to a group of strangers knowing that they were going to stop your heart.

All your life people have said to me, "I don't know how you do it." And the truth is bud, I don't know either. God saw our need and granted us the strength and grace to survive those difficult days. And that's exactly what we did. We survived. We sat in two chairs that were pulled up next to your bed in that open cardiac intensive care unit for a solid month praying that God would let us keep you longer. And your army continued to grow. As you got sicker, people from every corner of the earth poured love into our family and we saw God's mercy and grace in the most real and tangible way that we ever possibly could. Because, truth be told Jack, you belong to Him. You always have. But He allowed us to keep you here because He sent you here for a reason. You've got mountains to move kid and you hadn't even gotten started yet.

A little over a month later, beyond every doctor's wildest expectation, we put you in your carseat and drove you home.

That's when time really started moving beneath our feet. As you got better and grew, you came off of oxygen and medications one at a time until you were a seemingly perfectly normal and healthy growing kid. And you grew so FAST.

In the years between the Glenn and the Fontan we got to feel normal for the first time. We celebrated milestones and cheered our hearts out for you at t-ball games. I put bandaids on boo boos and bargained with you to eat your vegetables and let me cut your fingernails. Your love for super heroes and Star Wars grew, and then eventually, so did my tummy. There wasn't one single moment where you weren't over-the-moon excited to meet your baby brother. And H rocked our world all over again! Your attachment to Harrison was immediate. You were his protector and defender. You wanted to feed him and help bathe him. You never wanted to miss a second with him. And watching you two together has been the greatest joy of my life. Most days I feel like my heart can't even contain the love I have for you guys. And oh how thankful I am that God let us keep you.

Fontan day (May 26, 2016) was quite different for me from the Glenn. This time you weren't a new baby. You were a person. You had this big personality and this extraordinary heart. And somehow, handing you over this time was even harder. We talked to you so much in the days and weeks leading up to the Fontan. You understood as much as your sweet little mind could comprehend. I honestly think you were much more ready than I was. But again, we did what we had to do. And God filled in all of our empty spaces. And, again, we all survived. You moved through your recovery like a true super hero and I watched you in total awe of your spirit. You were the most brave person I had ever met. We had many setbacks again but this time you took every single day like a champion and it gave us the courage and strength to press on. And then finally, we pulled you in that little red wagon out to the car, put you in your carseat and drove you home. And we thanked God for again allowing us to keep you.

The days, months, and years of your little life are a whirlwind in my memory. Most days I can't fathom how quickly the time has passed. I feel like I should still be rocking you to sleep. But Jack, let me tell you this... Not one of those days passed that I didn't treasure and thank God for the opportunity to be your mom. Everyday I tell you to please stop growing. I wish I could freeze time and keep you little. You're so perfect right now. 5 and a half is my absolute favorite age so far. Your little personality is bigger than ever. You love super heroes and Star Wars and Disney World. You love to swim and turn flips and sing Trolls songs. You love to help people and are always looking out for Harrison. Your a typical rough-and-tumble little boy with the biggest and sweetest heart of anyone I've ever known. You love fiercely and deeply and without hesitation. You believe the whole world is good and you truly believe with mountain-moving faith in the power of prayer.

I can't believe that you are about to go to kindergarten. In so many ways I'm terrified that you're not ready. But I think the reality is that I'm the one who isn't ready. I'm not ready for you to be big enough to go to school but also I'm not ready for the changes that I know are going to come along with it. I've treasured the years of your wide-eyed innocence and letting that go is almost more than I can bare. The world is a big, scary place and I have given all of my energy these past 5 and a half years to shielding your eyes and protecting you from it. But now its time for you to go into the world. And it is my greatest prayer that God will grant you grace in your moments of growth and maintain the innocence that is in your heart. I won't be able to text your teacher 10 times a day to check on you. I won't be there to wipe every tear and hold you when your feelings get hurt. I won't be there to celebrate every small victory. But in my heart, I know that you are ready for this. You are stronger and braver than I've ever thought about being. You make friends with every person you meet and you make the most out of every situation. You won't mind that I'm not there. In fact, I bet you'll be pushing me out the door when I drop you off each day. And you'll go in there and grow and learn new things and make new friends. And the minute the bell rings and you put your little backpack over your shoulders and walk out the door, I'll be waiting for you. Always ready to hear every detail of the new things you learned and the dragons you and your friends slayed on the playground. And even though I know there will come a day when you don't run out and jump into my arms, I'm going to hang on tight and soak up the moment were in while you still do.

Tuesday, January 24, 2017

8 Months Post-Op...and Some Other News

Tomorrow marks 8 months since Jack's Fontan. When I think back to all of the years that I spent dreading that day, I almost can't believe that 8 months have already passed. From time to time when I start to allow my mind to drift into a place of fear, I go online and look up stories of adults living with CHD to remind myself that Jack WILL grow up and that everything is going to be ok. It's a tough reality to live in but it's the story we've been given so I have learned to trust God and embrace the good, happy and healthy days that we're living in now and try to worry less about what's going to happen 10-20 years from now. God will provide. 

As for today, Jack is great. No complaints. He's wilder than ever! Both of my boys are growing like weeds and I can't figure out how to slow it down... So I do what most moms do and take lots of pictures and do my best to live in the moment and soak them up and try not to think about how fast they're growing. 

Lastly, I guess now is as good of a time as any to let the world know that I'm changing schools. Y'all. It's been a whirlwind year to say the least. First of all, I want to say how blessed I have been during my time at Cold Springs. I have had amazing kids and was instantly welcomed into the school and community like I was a part of the family. I am so thankful to everyone who made my time at Cold Springs great! :) Ultimately, though, my heart is in Walker County.  So... I accepted a position at Cordova High School and will begin teaching there next Monday. I'm super excited to be reunited with close friends, teaching at an amazing school and to finally feel like I'm settling down for the long haul. 

Monday, January 2, 2017

So Long 2016

So long 2016.

It wasn't a terrible year in the grand scheme of things. It was just THE year. The Fontan year. So, not a year I looked forward to and basically a year that I'm not sad to see go.

And along with 2016 goes the "in-between" years. Jack was born in 2012 and we were told he would need 2 major open-heart surgeries. His first was the Glenn in 2012 when he was just 4 months. After he healed from that surgery and our life settled down we learned how to feel "normal"again. But for 4 years we knew that it wasn't over. Another major surgery loomed like a dark cloud over our heads. It was always coming. And it was always terrifying.

BUT, now it's over.

On May 26, 2016 Jack had his Fontan surgery. Recovery was long and hard but now it's over and even though the surgeries were palliative and not curative, the surgical path that was laid before us the day after Jack was born is finally complete.

As far as what's next... We just don't know. But we go every six months for a check-up in the clinic and every time Dr. Law says Jack's heart looks good and we can go home, it's another six months we can breathe deep, go home and live. And hopefully, it will be many years before we have to find out what is next.


Some other noteworthy events of 2016:

Jack turned 4 in January and H turned the big ONE in July. He learned to walk and has started saying lots of words and just has the best little personality. It has been so much fun watching him grow and change and watching Jack grow into his big brother role. They are the BEST of friends. If you find one the other will not be far behind.

Josh and I both started new jobs this year...which was crazy and unexpected but really, really good. I've blogged about my job change before so I won't go into the details of why and how but I am really  loving my new role as a history teacher and even though I miss my cheerleaders dearly, nothing compares to coming home to my boys as soon as that 3:00 bell rings everyday!

Josh got the call that his office was closing while Jack was in the hospital. It was a shock for us since he's been there for almost a decade but we had our hands and hearts full with Jack's surgery and so we truly gave it over to God completely and literally within days Josh had a job offer from a great company where he was given the opportunity to finally do something he truly enjoys. It was an amazing blessing from God and we are both so thankful for the outcome of the unexpected changes.

I finished my Master's Degree! Woohoo! While it only actually took a year and a half, being in grad school while working full time and being a full time mommy was no joke and I'm beyond glad its over.

We went to Disney World a few weeks ago! It was HOTTT but so much fun. We made precious memories and can't wait to go back! <3


So, all things considered, we'll call it a good year. But, I'm thinking 2017 will be an even better one. So here's to 2017 and all of the ups and downs that this year will undoubtedly bring our way.

PS: Do you love my new blog template? I am LOVING our new makeover by Kelsey at KreatedbyKelsey! <3

Saturday, June 18, 2016

24 Days Post-Op and We're Going Home Tomorrow

Well, here we are… Pushing a month in the hospital and I really can’t believe we’re in this boat again. I didn’t foresee the Fontan recovery being this difficult. Yesterday a doctor came in that worked with us after Jack’s Glenn and she looked at us with sad eyes and said, “Y’all just can’t have an easy time, can you?” I guess not. 


We made it home last Wednesday afternoon knowing that our chances of landing back in the CCU were pretty high, which was scary to me. I HATE the hospital life and being separated from H but I would rather know that Jack is completely well before we bring him home. But nevertheless, they let us go home with the promise that IF the fluid builds back up it will be over a longer period of time (days, not hours) and they will check him again on Friday. Friday morning we saw the cardiologist at the clinic and he said that the fluid was still there but that Jack was managing well and that it didn’t seem to be building, just resting. He also looked at the growing infection around Jack’s incision and started him on Keflex. We made an appointment to come back Monday at 11 to check everything again. 

The weekend was WONDERFUL. Jack played and laughed and rolled in the floor with Harrison and it wasn’t as scary to have him at home as I thought it would be. He was already two full weeks post-op and he felt great. He played outside with his friends and LOVED being home. Sunday night he went to bed feeling fine. No complaints. He woke up though crying that his incision (infected area) was hurting. I gave him some Mortin and he went back to sleep. Around 1:00 he woke up screaming and couldn’t go back to sleep. I was really worried so I decided to just go ahead and take him in to the ER. I knew that we had an appointment in the clinic at 11 but I didn’t want to wait if something more serious was going on. So me and Jack headed back to Children’s. They did some blood work and after a few hours the doctor came in and told us we were being re-admitted to treat the infection and before we knew it we were back in the CCU with all of our old friends (nurses). 

Two days ago Jack had a little minor procedure where Dr. Dabal went in and cleaned out the infected area of Jack’s incision and took cultures so that he could tell exactly what kind of infection it is so that they can know for sure that they’re treating it with the right antibiotics. Now Jack has a hole in his chest. I won’t venture to guess the size but I’m pretty sure you could fit half of a golf ball down in there. They’re packing it with gauze daily and bandaging it up and the goal is for it to close up from the bottom up, so that it will heal completely and not just close at the skin over the top of a hole. SO for now, big hole, big bandage. Uck. 


Dr. Dabal told us the day we got re-admitted that even if Jack didn’t have the infection we would have likely been re-admitted anyway during our clinic visit because of that pesky fluid. So while Jack was getting IV antibiotics to treat the infection anyway they were just going to go ahead and get him back on some IV diuretics to hit that fluid hard too. They went ahead and told us on Wednesday that after two days of the maximum dose of IV diuretics Jack’s fluid was being so persistent that they thought that he was going to need the pigtail tube to drain it so they were going to go ahead and plan for it Thursday morning and they would place the tube and clean out the incision at the same time. 

I had gone home to spend the night with H Wednesday night and was coming back early Thursday morning to be with Jack before the procedure. I had brought Harrison with me because I knew seeing him would lift Jack’s spirits before he had to go back for the procedure. As I was pulling into the parking deck my phone started ringing. It was Josh. He told me that he had good news. ALL of the fluid was gone. All of it. 

Thats. Not. Possible. 

They had maxed Jack out on IV diuretics for DAYS and the fluid hadn’t moved. They were 100% sure that it wasn’t going to move at all. Not even a little. Hence the need for the tube. So for them to pull up an x-ray and say that its GONE was unbelievable. The cardiologist told us that there was a big simultaneous gasp when the x-ray came up because everyone in the room was shocked. 

That’s just God. 100%. 


So they went ahead and planned for the procedure where they would clean out the infection but didn’t have to place the tube. Thank you Lord. We went down with Jack and talked to him until we had to leave so they could sedate him. I could hear him crying MOMMMMYYY until the door to the CI closed behind me. Ugh. Worst feeling ever. But they gave him the sedation drugs very quickly after that and he zoned out. He was awake the whole time but completely out of it. We got to go back and see him after and it probably only took 10 minutes. Dr. Dabal said it went great and there wasn’t really any infection in there. He said there were white blood cells which indicates that he was fighting an infection but no bacteria so that’s good news. They sent cultures to make sure but he felt confident that nothing would grow there. He explained the hole and the packing and re-growing process. 


Jack was so funny coming off of that sedation. At first it was kind of scary because his eyes were open but wouldn’t fix on anything and when he would try to follow my voice and look at me his eyes would jump really fast like 100 times. I didn’t like it. It passed pretty quickly though and then all of a sudden he looked over and said “I love you Mommy.” Then he started talking silly. I said, “do you feel good?” He said, “Yea. YEA! YEAAAA!!!” lol Then he started asking for Harrison a THOUSAND times and screaming his name. His nurse just giggled at him. It wasn’t long after that when he came back to his normal self and we got to head back up to our room in the CCU. 

Since then we’ve just been hanging out. Jack has been on isolation until the cultures come back. So, he can’t leave the room which is HORRIBLE for our little go-er and do-er. He’s been driving us and his nurse friends crazy wanting out. But he’s 100% his wild and silly self and ready to get back home again soon. 

Today they took him off of all IV drugs and switched everything over to PO. They went ahead and got him a prescription for his antibiotic filled so we don’t have to wait around on it forever when we get discharged tomorrow. (Oh! Did I forget to mention we are GOING HOME TOMORRW??) Once we’re home plan will be the same as it was before. Frequent visits to the clinic for x-rays and echoes to check for fluid probably for a long time. But frequent visits to the clinic from HOME are better than daily x-rays at 5am in the hospital. So yay for going home tomorrow!! They taught Josh how to pack and dress his wound since, let’s face it, Mommy cries at the very sight of it from a distance and Daddy is tough and brave. Josh will change it twice a day for a few days and then change to once a day. Dr. Dabal seems to think it will close up in a few days. I sure hope he’s right about that. The sooner the better! As for the fluid, let’s just pray we’ve seen the last of it!  


I’m tired y’all. And this last week almost broke me. I came into the Fontan feeling so brave and so ready to put this chapter of our lives (the waiting for the Fontan chapter) behind us. I was scared but I was also confident that it would be different and we wouldn’t have complications and set-backs. We had our fair share of complications after the Glenn and this time would be easy. Boy was I wrong!Thankfully, the issues we’ve had this time around still don’t compare to the recovery from the Glenn. Mostly because the complications we have experienced this time have been somewhat expected and completely manageable. After the Glenn Jack was so sick the whole time and the doctors weren’t sure how to fix him or even if they could. This time he has felt good for the most part and they have been able to get ahead of the problems the whole time so it hasn’t felt as scary or overwhelming. 

However, there are moments in this hospital life that my mind and my heart aren’t on the same page. In my mind, I know that Jack is doing well and the infection and the fluid are manageable and treatable and simply setbacks that will keep us here longer but not dangerous or life-threatening. BUT in my heart, I’ve been terrified. Watching my baby go through all of this day in and day out. Connected to machines, cut open, screaming in pain, writhing from withdrawals, needles poking him, people holding him down, on and on… It’s just too much sometimes. It seems so unfair. When my friends all post pictures of their sweet kids playing at the park or swimming in the pool. I can’t help but question why this has to be the life that was chosen for Jack. It’s hard and it’s scary and its unfair. And I want to scream or break things or do anything that will make all of this stop. But it doesn’t stop. It can’t. Because the reality is that this is the life we were given. Hand chosen for us by the Creator of the universe. And I don’t know why. I don’t know why my beautiful, happy, full-of-life little boy had to be the one to carry this burden. But I know that he carries it with a heck of a lot more grace than I do. And I’m sure he always will because this is the only version of life that he will ever know. 

But as we walk through the hallways of this hospital filled with sick children and scared parents, life really falls into perspective. We will walk out of here soon. We will go home and eventually resume the life that we know. Jack will play in the yard and he will grow and we will have years of life and love and laughter with him ahead before we have to face the next step in this journey.Even though I would give anything to trade this life for a perfectly healthy one for Jack, I can be thankful for the good things. We are GOING HOME. Jack is RECOVERING. God is GOOD. 

I watched a video this morning that reminded me that even before I was born God had called me to be the mother of a child with heart disease. Every moment of my life I was being prepared for this journey. Even in the toughest days of my life before Jack was born, when I was facing battles that felt so difficult and that I didn’t understand, God was pruning me and preparing me for the even more difficult days ahead. And God’s strength fills every single crevice of my weakness. He lifts me in those dark moments. He reminds me to turn my eyes to Him because He knows that He is the only place where my heart will find true peace. He calms my raging seas. Every single time. And let me tell you, my seas, they can REALLY RAGE. The hurt and the anger and the bitterness can rear their ugly heads in my heart and I can go from zero to one hundred in one second flat for no specific reason and He’s right there to talk me back down and remind me that everything is going to be ok. Every single time. 

I am so thankful for God’s grace. Though all of this God has continuously poured his grace over me and Josh and our family. We all struggled with the idea that the Fontan was coming. The idea of handing him over felt impossible. But we knew it had to be done. Jack couldn’t live without it. So we prayed and waited. (and I cried. a lot.) And after four years or waiting and dreading and fearing that day, I can’t believe that it was TWENTY-FOUR days ago! It’s OVER. Done. In the past. There are moments when I seriously can't even wrap my brain around that. This has owned and defined our lives and now its done. Thank God. Literally. 


The Fontan is not the end of our journey. It was a palliative, not curative procedure. It put a really GREAT band-aid on Jack’s heart issue that will last a really long time. And for now we are thankful. We are looking forward to YEARS of peace and good health. As for the future, we are believing that it will be many years before we have to worry about the “next step.” 

Friday, June 3, 2016

Post-Op Days 6, 7, and 8

It’s been a few days since I’ve updated so I’ll try to just hit the highlights…

Post-Op Day 6 and 7

The past couple of days have been really good days for Jack! He’s been getting up moving around and walking more than ever. We’ve been to the play room about 50 times. He loves the big window and the block table and the fact that they’re all the way at the other end of the hall from us just means he has farther to walk and that’s good! 

They ran some tests on day 6 to check for chylothorax and he was negative. Yay! They also did an ultrasound of Jack’s throat area to check for blood clots and he didn’t have any. Another yay! The drainage has just been really persistent and and negative test results mean that the new blood flow is just causing Jack’s body to have a harder time adjusting than most other kids do. Now we just wait for it to slow down. 

On day 7 Jack got one tube out! Yay! The left side has been draining a lot less than the right side. The nurse practitioner came by yesterday morning and he told us that the plan is to take the one tube out and keep watching the other one. They’ve bumped him up on the diuretics to try to get rid of some of the fluid. He said that Dr. Dabal created a pathway between the two areas where the fluid sits so that if the fluid on the left does build back up it should be able to seep over to the right side and drain out of the remaining tube. Then once the right side dries up for the most part, they’ll pull that tube. We’ll continue on the diuretics for a while to make sure it doesn’t build back up. We’ll stay in the hospital for 2-3 days after the tube comes out to make sure it doesn’t build back up quickly. Once we go home they’ll monitor us on a weekly basis with chest x-rays and echoes to check for fluid. The hope is that it doesn’t come back. However, its likely that it will. He said that they like to get the kids home and to their own environment where they can move around more freely and eat better because those things will help with the fluid. But if Jack starts showing signs of being tired, breathing trouble, or eating trouble we need to bring him back immediately. He said to always pack a bag for the first couple of months when we come because the likelihood that we will have to stay is high every time. He said if we do end up getting re-admitted they usually will start with diuretics by IV to try to clear it back up and if that doesn’t work there is always a possibility of having to get a tube back in to drain it. However, there is definitely a good possibility that we will go home and not have to be re-admitted so we’re believing and praying for that. And if we do have to be re-admitted then we’ll cross that bridge when we get there! 

We’ve moved to giving all meds by mouth which is not fun. Its usually 3-4 different things every 4 hours with a couple here and there in between. He screams and spits and cries. Not fun. 

Having the second tube out is making a huge difference for him. He is happier and way more mobile. He takes off without us and we have to catch up before he pulls the last tube out! But happy and wild is good. Happy and wild is JACK! 

Post-Op Day 8

I can’t believe its already been over a week! We waited and dreaded this surgery for FOUR YEARS and now here we are. Eight days post-op. Feels amazing to know its behind us for good! And if we hadn’t had to reschedule we would only be post-op day ONE right now so thank goodness for surprise schedule changes! We are about to head down to the arts and crafts party downstairs that Jack has been looking forward to all day! Our fingers are crossed that the third and final tube will come out in the next 2-3 days. That means home in less than a week! 
Here's Jack showing you how he's only got one tube left! :)

Tuesday, May 31, 2016

Post-Op Days 4 and 5

Post-Op Day 4

Yesterday was a really good day for Jack. We got him up and went to the play room for the first time. He played play-doh with some friends. He was in great spirits and walked a good bit. We came back to the room after that to rest for a while but he could NOT miss the Lego Movie playing in the room of Magic downstairs so at 3 we loaded him back up in his wagon and went to the movie. He loved the room and the big movie screen but about 3 minutes in he decided he was just too tired so we went back to our room to rest. He didn’t take a nap ALL DAY! He talked more like himself and played some in his bed. We did stickers and played with some of his toys. He drank all of his medicines good in his milk cup so we didn’t have to stress over getting him to take them anymore. His drainage was still about the same. Dr. Pearce came by and said that if the drainage doesn’t slow down they will have to look at some options to find out why it is flowing so heavily. One of those is another cath, which of course we want to avoid because it means anesthesia again and our boy taking steps backwards. So we’re continuing to pray that the drainage slows down soon. 

Yesterday evening after the movie Jack was really tired and in a lot of pain and he started itching. They say that is a side effect of the morphine so they gave him some benadryl in his IV. After just a couple of minutes he started going crazy. He was screaming and kicking and thrashing. He was yelling out stuff that didn’t make sense. He thought he was falling and he was just lying on his back. He was scratching and pulling on every wire and cord. It was awful. BUT it was familiar. He did the same thing the night before. After they stopped the IgG infusion the night before they gave him a dose of steroids and benadryl at the same time to reverse the bad reaction he was having to the IgG infusion. He started having that same crazy reaction. We thought it was the steroids. They gave him morphine and he passed out. Well, after seeing that same response tonight we realized that he just can’t tolerate benadryl. So they had to give him morphine again to knock him out and let the benadryl have time to get out of his system. Needless to say benadryl is going on his drug allergies list! Other than that one episode it was a really good day. Its so amazing to have our sweet boy’s personality back, even if that includes him sassing and bossing us around! ;)

Post-Op Day 5

Today was another really great day! Jack slept good last night since he didn’t nap yesterday. He woke up a few times through the night when his nurse was in here. He still HATES the chest PT. But he’s back to talking non-stop. Every nurse, doctor, physical therapist, respiratory therapist, pretty much anyone who comes in our room has to play with him and hear his stories. He’s talking everyone’s ears off! Its just wonderful. He’s smiling and laughing and getting his energy back. We went to the play room again this morning and he played with the kitchen for a little while. Then we moved to the play area in front of the big window so he could sit and play and feel the sunshine. He played blocks with his daddy and had a good time. He laughed and giggled the whole time. When he got tired we made him walk about a fourth of the way back to the room before we let him get in his wagon. We went back to the room and rested until time for the build-a-bear workshop downstairs. He could NOT miss that workshop. We loaded him back up in his wagon and headed down stairs. He got a bear and named her Madison. He doctored her all up and had a great time. He didn’t want to leave when we were done! But bother was waiting on us in our room so we headed back up to see him. Jack and Harrison were both equally ecstatic to see each other! Jack’s Nonna, Mimi, Shay, and Aunt Jeanie all came and brought tons of prizes for him to open. He had a great time playing with all of his new toys. 

Harrison got ready for a nap and Jack was feeling tired and needing to rest so everyone decided it was time to go. Daddy decided to go home with H for the night since he’s been away from us all for almost a week now. (Can I just take a moment here to say how amazing my mom and mother-in-law are for keeping H for us this entire time? They’re the best! They’ve even been bringing him over here to see us!) So now its just me and Jack for the night. We’re pretty much settled in for the evening. He’s watching Frozen and eating Doritos. Feeling pretty good at the moment, although he’s having some pain and doesn’t want to drink his milk because he knows his medicine is in there! 

The nurse practitioner came in and talked to me about what is going on with the tubes (mostly because I made her.;) She said that right now we’re just in a waiting period. She said it doesn’t always happen but definitely happens often. The drainage is just another result of the new blood flow and Jack’s body trying to get used to the new pressures. It will stop when his body is finished adjusting. The GOOD news is that his fluid never turned that milky color that is associated with the chylothorax. She said that he’s been eating and drinking enough now that we should have seen a change by now if that was going to be the case. We’re not 100% out of the woods with that issue but she said that she would say that it probably isn’t going to change. So yay for that! No weird diet! She said that there is a possibility that we will have to have another cath if the drainage doesn’t stop but thats not in our immediate future. For now and the next several days we just wait and continue to get Jack moving and keep the fluid draining. The more he moves and walks the more it will drain out of his body. He’s also on a couple of medications that are meant to dry that fluid up more quickly. It’s likely that we will be here for another week or so just watching the tubes drain. Our prayer of course is that it will dry up on its own without further intervention. Then Jack can continue to get better day by day and go home when they stop draining. Please continue to pray for these things with us. 

Sunday, May 29, 2016

Post-Op Day 3

Jack had a rather uneventful night last night. He was up the first half of the night with some pain but then got some pain meds around 1:30am and slept hard for the rest of the night. When he woke up this morning we got him up to pee pee. We made him walk all the way to the potty for the 2nd time and he screamed the entire way there and back. The chest tubes are causing him a lot of pain and more than anything, moving scares him. He knows moving hurts so he would rather stay in his bed and stay still where it doesn’t hurt. BUT he did it and was so brave. 

The doctor came by not long after that and told us that Jack’s fluid drainage is not looking great. Its a deep yellow color and the normal flow of the fluid would be lots of red then as it slows down a little yellow until it stops. Jack had lots of red and now is having even more yellow and it is nowhere near slowing down or stopping. This is leading them to believe that Jack is experiencing something called chylothorax pleural effusions.It results from lymph formed in the digestive system called chyle accumulating in the pleural cavity. The explanation is that during the surgery a part of the lymph system was nicked and some of that lymph fluid is leaking out now. The result is that the drainage will continue and be more persistent than just normal fluid drainage from the Fontan. Dr. Dabal told us before surgery that the drainage was going to be the main issue to deal with after surgery so none of this is crazy unexpected. They can’t tell just yet for certain that Jack is experiencing chylothorax because he hadn’t eaten a bite of anything up until this morning. Once he starts eating the fat from his food intake will turn the fluid that is draining a milky white color. Then they will know for sure that this is what Jack is experiencing. However, with how little he is eating and drinking, it could take up until tomorrow or longer for that to happen. Right now we’re just treating it like normal and waiting to see what happens. Either way his fluid output has not slowed down so it doesn’t look like we’ll be losing either chest tube for a good little while which means we’re kind of just stuck waiting. 

Jack is also experiencing a few other minor issues. His doctor said that his albumin, NaCl, and IGG levels are all too low and if they continue to let them fall we will get into a dangerous zone that we want to avoid so they’re treating him for each of those three issues today as well. Albumin is a protein that is found in the blood. With his levels of albumin dropping it causes the osmosis of the fluid in Jack’s blood to happen easier which would mean more fluid which is what we’re trying to avoid. (Hey medical friends, I could be totally jacking this up-no pun intended- but I’m doing the best I can so hang in there with me and feel free to correct your heart out in the comments!) His NaCl level is basically his sodium intake. Since he’s not eating he doesn’t have enough salt floating around in him. They can’t push it in his IV so we’re trying to get him to eat some super salty foods. Popcorn and french fries are healthy foods of choice today. Lastly his IgG levels are low and he is having to have that supplemented also.Immunoglobulin G is an antibody found in the blood. Basically, another thing he needs that his body is not producing super well right now. They gave him some benadryl just in case he was to have a bad reaction to it and then after it had time to kick in good and strong they came back to push the IgG. The infusion started super slow and after about an hour Jack woke up needing to pee pee. When we got him uncovered to use the bathroom he started shaking really bad. His face was super red and flushed looking and his teeth were chattering. We called for the nurse immediately and she called the NP who told her to stop the infusion immediately and give Jack steroids, more benadryl, and Ibuprofen. We covered him up really good and I loved on him until the shaking stopped. It didn’t take long for his normal color to come back and the shaking to go away. However, a few minutes later Jack started kicking his legs violently and screaming hysterically. He was thrashing around in his bed and grabbing at all of his cords and tubes. It was scary. The nurse said she thought he was having a bad reaction to the steroid. So we got him up and got him to stand up next to the bed. He continued to yell and kick his feet. The nurse pushed morphine to calm him down and after a few minutes we set him back in his bed and covered him up and he fell back asleep. It was a very scary and overwhelming hour to say the least. 

The NP came back in to talk to us about what had happened. He said around 10% of their patients that have to have the IgG end up having a bad reaction to it so its not super uncommon. They won’t try again for several days and depending on whether or not his fluid drainage slows down, he may not need it again. The IgG is just basically a replacement of the red blood cells that he needs to fight off infections. With the massive amount of fluid he has been draining, he has lost a lot of those red blood cells and therefore has a compromised immune system. If the drainage stops then his immune system will build itself back up and all will be good. If not, then they’ll need to try again with the infusion in a few days. He said if we have to try again they’ll try another name brand, sometimes that makes a difference. In the meantime we need to be even more careful than normal to make sure no one brings any germs or sickness into our room. So we’ve decided to stop all visitations for the next few days until  we can tell if he’s going to get past all of this on his own or if we’re going to have to keep going with the interventions. 

Needless to say, after a dose of morphine and a dose of benadryl at the same time, our boy passed out cold and has been completely out of it since. He’s slept like a rock all afternoon. Next time he wakes up we’re going to try to get him out of the bed again one more time for the night because the more he moves around the better the fluid drains. 

Jack’s right upper lobe of his lung is not looking too hot on his x-ray today so his sats dropped to the upper 80’s and they ordered some chest PT for 4:00. But since he was in the middle of a crazy episode at 4:00 they skipped it and just came in for the first time to do it tonight. All of the lying around and sleeping is good for some healing things but bad for others. He needs to be up, moving around, coughing and talking in order to clear some of the junk from his lungs and throat. Hopefully tomorrow will be a better day and we can see him up and about a little bit more. As far as the chest PT, he didn’t like it to say the least. 

Each day is progress. Even if it feels like one step forward and two steps back, its still one step forward so we’ll take it. The VERY positive is that all of the issues we have today are fixable and not life-threatening. The negative is that we have to fix these issues to make sure that our boy gets healthy and well enough to go home. It could take a few days. It could take a few weeks. In the meantime we’re all missing our H like crazy. He came today and spent a few hours with us. Jack had been missing him so bad this morning when he was awake and alert but by the time he got here Jack was already out of it and couldn’t enjoy him being here. We’ll try again in a few days. Mommy and Daddy’s hearts are torn to have our two sweet boys in two different places. But we are exceptionally blessed to have amazing parents taking great care of our sweet baby while we stay here with Jack who needs our full and undivided attention right now. I keep telling myself that this is only temporary. It will pass and my sweet family of 4 will all be back under one roof, OUR roof, soon. God’s got this. 
A quick selfie with our favorite visitor today! 

Jack eating popcorn this morning and watching Aladdin. 

Jack drinking some milk tonight and watching Aladdin. Again.