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. 

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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. 

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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%. 

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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. 

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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!  

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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. 

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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.” 

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! :)

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. 

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. 

Post-op Day 2

Jack had a really rough night last night. He threw up all night long. He was so thirsty so we would give him a little juice or water to help clean out his mouth each time and then half an hour later he was throwing up again. He would sit up and say, “I’m about to throw up. Go get the nurse.” ;) Sweet boy.

This morning he woke up really struggling with pain. He was not as responsive to us as he was yesterday. There were sometimes when he was just staring off into space and not answering any of the questions we asked him. Then other times he would wake up thrashing around and yelling that it hurt. He would wake up yelling STOP!! I think that the pain surprised him when he woke up and he thought someone was doing something to him even when we weren’t standing next to his bed. He’s also been yelling out “Oh my God!” over and over. That is something he gets in trouble for at home because he knows he’s not supposed to say that but its not exactly easy to get onto your baby when he’s screaming in pain in a hospital bed. So we have just lightly corrected him and reminded him that we say gosh or goodness. ;) 

This afternoon he took a turn for the SLEEPY! He has pretty much slept all evening. He has woken up to get some juice or water or to stand up to pee pee but other than that he’s been out like a light all afternoon. We’re sincerely hoping that doesn’t mean that he’ll be a party animal all night. 

He asked me for a juice box about an hour ago and so I got him a new one and held it up to his mouth. He asked me for the wings so I attempted to get the wings out and ended up squeezing the juice box and spilling juice on his bed. Me and Josh both laughed and then Jack SMILED. WITH TEETH! Yay for small victories! :)

His drainage has slowed down some throughout the day but there is a big possibility that its only because he has been laying down all day. Hopefully the fluid is slowing down though and we can talk about getting one, if not both of his tubes out tomorrow or in the next few days. Until the tubes come out our days will probably look a lot like today did. Just laying in bed and drinking sips of juice or water. Once the tubes are out is when we can really start getting him up and about and maybe even talk about him taking a bite or two of a cracker. Baby steps. 

Even though Jack is in a lot of pain right now and doesn’t seem to be making great strides in progress, the reality is that this is only post-op day 2. He’s off the vent, off of oxygen, and satting in the upper 90s. Every time I look at that monitor I just smile from ear to ear. My baby boy. Finally pink. The hard part is over. Surgery went well and now we’re just in recovery. It won’t last forever. Every day it will get better until he’s back on the ball field or running in the yard with his friends. 

Post-Op Day One

Jack had a fairly uneventful night last night. He woke up every 20-30 minutes but would fall back to sleep pretty quickly. He slept for a solid 3 hours from 4-7am. Dr. Dabal came by this morning and said everything was looking great and that Jack was doing really well. Physical therapy came by pretty early and asked Jack if he wanted to get out of the bed. He had been wanting to get out of bed all morning so he was more than willing to go with her to the bathroom. It was a rather big undertaking considering all of the tubes and wires that are connected to him. They had to get him hooked to a portable oxygen tank and cap off all of his IV’s and tubes to get us to the bathroom. I stood in front of him and held his hands while the physical therapist, the nurse, and Josh all lifted him off the bed and onto the floor a little at a time. He walked with me then, holding both hands, all the way to the potty. He pee peed really good and then walked all the way back. By the time we made it back to the bed he was exhausted and needed to get comfortable and rest. 

His pain has been rough today. He is really struggling with the chest tubes. He hasn’t mentioned his actual incision one time… Its all about those tubes. Several friends told us to expect that. The tubes are very painful and once the tubes come out, your baby will come alive again. The problem is that the tubes are for the fluid that is draining and Jack has a TON of drainage. Dr. Dabal told us that we could expect to stay 2-3 weeks just waiting for the draining to stop because most Fontan patients experience a significant amount of fluid drainage. Basically, the tubes will be the last thing to go before we can take him home. Yuck. 

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At around 3 this afternoon we got the green light to move to the step-down unit. You can’t imagine how surprising and overwhelmingly amazing that felt. Jack stayed in the CICU for over 3 weeks last time around. To leave the CICU after one ONE DAY this time has been unreal. We don’t know how to act! When we got to our new room we realized that here Jack doesn’t have to be attached to so many monitors! He has his two chest tubes, his main line in his groin, another line in his hand, his oxygen, his sat monitor, and his heart monitor. We got rid of his arterial line before we left and got to say goodbye to his oxygen shortly after getting to the new room. And he is satting a BEAUTIFUL 90 on NO OXYGEN! Praise Jesus!! 

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Since getting to the floor Jack hasn’t been able to keep anything down. We’ve tried milk twice and he threw it up both times. He has thrown up about 4-5 times total, sometimes just dry heaving because there is nothing in him to throw up. Tonight he is holding down a few sips of gatorade. BUT he has been pee peeing pretty consistently so he’s not dehydrating just yet. We’re going to keep pushing the gatorade slowly and hope that it stays down! 

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In the grand scheme of things Jack is recovering perfectly. His saturations are holding strong in the low 90’s. His color looks amazing. He got to come off of oxygen and his IV drip. Right now its a waiting game. We’re just watching the fluid drain and hoping that it slows down. It’s beyond hard to watch him in all of this pain but ultimately the pain is temporary and will go away. The bottom line is that our baby is done. The surgery that has been living in our thoughts and dreams for the past 4 years is over. Day by day he will get better. Before we know it he will be back to running and playing and this time he won’t get winded as easily and he will be even harder to keep up with! And, God willing, it will be YEARS and YEARS before we have to face anything like this again! 

God has really shown up and shown out this time. I can’t even really wrap my brain around it. Before Jack’s Glenn surgery when he was a baby I used to sit in the floor next to his cradle with my hand between the bars holding onto his little foot and crying and begging God to save him. I was so scared of that surgery. I didn’t know if we would ever get to bring him home again. And let me tell you friends, it was a long hard road. God didn’t let me go in expecting it to be easy. Because He knew it wasn’t going to be. He prepared my heart. 

And this time around in that same way He prepared my heart again. But this time, I had peace. I can’t even explain it. After what we went through last time I should have been terrified. And I would be lying if I said that I wasn't scared. I cried my fair share of fearful tears. But something in my spirit was there. Holding me together. Telling me to let go of my fear. That it was all going to be ok. So much so that when I was praying about the surgery there were times when I couldn’t even find words to say. I just found myself telling God that I needed Him to help me trust Him. I wanted to just lay it at his feet and I needed SO MUCH GRACE to be able to do that. And y’all, He gave it to me. Seriously. He did. I can’t explain it. I just felt so much peace and assurance that this time would be different. Not because we deserved an easier road because last time was hard. Not because Jack was older and stronger. Just because God was telling me. I could feel it in my bones. This time would be different. 

There is no time when you will find yourself closer to God than when you face the unimaginable. So many people tell me that they can’t imagine what we’re going through or how hard it must be. That’s true. If I had two perfectly healthy boys I would think the same thing. But God just gives you what you need when you need it. He doesn’t even wait for you to ask for it. That’s what grace is. Its God moving inside you, giving you comfort and peace and strength when you didn’t even know you needed it. I can’t credit the strength and the peace to myself. I’m a human, a mom no less. I’m a mess over my kids. Jack stubs his toe and I fall apart. No, this is ALL GOD. None me. And the way that He works within us, pouring his grace over us and then doesn’t even demand the credit. I mean, I could take all the credit and be all, look how strong and brave I’m being, and he probably wouldn’t even zap me down with a lightening bolt. I mean, I don’t know for sure but I don’t think He does that usually. He just fills us up with whatever we need in the moment and then watches us walk in peace because He loves us so much. He wants to see us at peace. I guess that’s where grace began.

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PS- Brother came to visit us today and we finally got our first sort-of smile out of Jack. I knew H would be the one to bring his smile back! They love each other so much! <3 

Fontan Day - May 26, 2016

We had a really rough night last night. Jack accidentally smashed his little finger in the car door and it hurt him really bad. He cried on and off all night and hardly slept at all. The only way I could get him to rest was to sit with him on the couch in the living room. We watched Jake and the Neverland Pirates until he fell asleep. I couldn’t sleep anyway so it didn’t bother me to sit up with him. I just hated to see him hurting and we couldn’t give him any medicine or even milk for comfort. I got up at 4am and got ready to go. We woke Jack up at 5 and took him straight to the car in his jammies. My Aunt Jeanie came to spend the day with Harrison. 

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We checked in at 6am. A TON of our family was already here to see Jack this morning before he went back. He got to give most everyone a kiss and a hug before they gave him the Versed. We got to talk with Dr. Dabal about what to expect and ask any last minute questions. At 7:30 they came to take him to the OR. Josh and I stopped to pray for him and he giggled the whole time. They let me walk with him to the OR doors and then I had to hand him over. He clung to me but was silly headed because of the Versed so when I handed him over he wasn’t too upset. We watched them round the corner. It was not easy. 

Once we got back out to the waiting room I ran to the bathroom to let some tears fall and then came back out to a sweet surprise… Two of Jack’s nurses from when he had his first surgery were waiting to see me! Heather was just heading out but Ashley was going to be in and out with us all day! That brought me so much comfort. She also reassured me that Jack’s nurse Amanda was going to be super sweet to him! This helped lift my spirits and get me back together. 

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They took a long time to make that first call (that he was under and they were going to start the procedure) and I started to panic so I went to the desk and the sweet receptionist called them for me. It just so happened that they were about to make the first cut. It was time. So we settled in and waited. The second call came to tell us he was doing great and they got through the bone easily. The third call told us that he was going onto bypass. Next call- 45 minutes later on the dot- said that he was coming off of bypass and things were going great. Last call said that the hard part was over and they were going to close up. It was a long morning filled with nerves and anxiety but also peace. God-given peace for all of us waiting out there. He sailed through perfectly. 

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Dr. Dabal met us in the conference room. He said that everything went wonderfully. There wasn’t much scar tissue at all. He said that Jack’s DKS was perfect and belongs in textbooks. He said that they didn’t have to do a fenestration because Jack’s heart function looked good. They didn’t have to stop his heart at all this time. He went on to say that Jack’s anatomy is ideal for the Fontan circulation and he thinks that Jack is going to do great in the future. He said that they talked about how great Jack’s anatomy is while they were in the OR and that if you have to have a kid born with a single ventricle heart, Jack’s is one you would want to have! He told us that even though Jack’s heart won’t last until he’s 80, he feels confident that it will get him well into adulthood and that by the time that he needs a transplant there is no telling what they will be able to do for him. What beautiful words to hear. He even joked and said that I didn’t look like I believed him. I just said that this is just a different ballgame than what we’re used to and its hard to take in all of the positive news. My human nature wants to doubt and find the negative but today it was all good news friends. 

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It was about another hour before we got to see him. When Josh and I rounded the corner my heart sang. My baby. Finally. Alive and done with surgery. We’re not out of the woods yet but it sure is nice to know that they’ve closed his chest up for the last time, for a good while at least. We had really prepared ourselves for what he would look like. After his Glenn he was very swollen and hooked to more monitors and machines than I could count. This time he just looked like my Jack, asleep, intubated, but Jack. My heart. 

Josh and I sat at his bedside for an hour or so until he started to wake up. He opened his eyes and looked at me. He was uncomfortable and seemed scared so they gave him some medicine to help with the pain and he fell back asleep. Later he woke up a little more and they got him ready to extubate. It only took a few seconds and the tube was out. Last time he was intubated for WEEKS. This time, hours. Wow. What miracles God still does. He was happy to have the tube out of his mouth and instantly started asking for juice. They told him if he could wait a while they would give him some ice chips. That’s not what he wanted but he said he would take it. He let the nurse give him one or two before he took the cup from her and started chomping down. I told Josh I’ve never heard someone’s chewing sound so beautiful! He got to drink some water a little bit later. Dr. Dabal said that we have to take it extra slow with Fontan kids because the new circulation of blood (bypassing the heart and going straight to the lungs) causes his other organs to have to adjust and drinking too much too fast might make him sick. 

Right now it’s 4:30 and I can’t believe that all of this happened today. I couldn’t have written a better possible story for Jack’s surgery day. All of the stress, anxiety and tears leading up to this day and God knew all along that He was going to bless us with the best possible surgery day. It is my sincerest of hopes that ALL of the glory from this day bypasses us and goes straight to Him. Jack is strong because God is funneling strength into him. Josh and I are making it because He is pouring His grace over us every single second. He deserves every ounce of the glory. 

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Pink fingertips today. What a beautiful day it is. Thank you Lord. 

Isaiah 43:2