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

One Day Pre-Op

Our bags are packed and I think we are about as ready as we're ever going to be. Today was great. We got to take a tour of the hospital to see all of the different places we will be throughout our stay. Jack got to meet Lego Man and they gave him a really cool box of Jake and the Neverland Pirates Lego Duplos and a cool lego picture frame for his picture with Lego Man. He was SUPER brave for all of his pre-op testing. He only cried once and that was for the awful blood work! All of the nurses and doctors that we met were wonderful and treated Jack like he was the ONLY kid on the planet! He loved all of the attention! Once we were done there we came home to spend one last afternoon with brother before we have to be away from him for a little while. Now Jack is out on the golf cart with his daddy, Harrison is asleep for the night, and I am taking a break from packing to get all of my last pre-fontan thoughts out.

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I think I should tell you guys that I am not just blogging for you. I DO want to update all of Jack's amazing prayer warriors but I also blog for Jack and for us. After Jack's first surgery I made him a Mixbook with all of the different pictures of him and included all of my blogs. That way when he's older he can go back and read all about his surgeries and all of the things that happened to him.

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So here is how tomorrow will go...

We will arrive at Children's at 6am and check in. They will take Jack back to a pre-op room where we will meet with his surgeon,anesthesiologist, and other doctors to go over what all they will do. We already know most of it and got a chance to ask question today but tomorrow is a one-more-time, just-in-case kind of deal. In the meantime he will get a dose of versed to make him loopy so that he won't mind going with the doctors when its time to go back. At around 7:00 they'll let our family flood his room to give hugs and kisses and say see-you-later. Then they will allow Josh and I to walk him to the OR doors. Then we have to say our own see-you-laters. (Prayers for peace for mom and dad during that time. That is the hardest part.) Once they're back there they will put Jack under using a mask. He will experience no pain at all. Once he's under then they will start to run his lines and get him prepped. Prep takes around an hour. Once they're ready to begin they will call us and let us know. We will be in the waiting room with our family and friends. I will post and let everyone know when the call comes. The second call will come when they're ready to put Jack onto bypass. The goal is for him to stay on bypass for 45 minutes or less but it could take up to an hour. We're praying that they don't have any bleeds (like last time) that would cause him to have to stay on bypass longer than necessary. We'll get a third call when they're ready to take him off and start his heart back up. They'll call once more when the surgery is over and they are ready to close him up. Closing up can take hours because they will be sewing layers together. Once Dr. Dabal is done he will come out and meet with Josh and I and tell us about the surgery. When Jack is done they will move him to his room in the CICU. Once he is all set up in his room Josh and I will be able to see him. They told us today that we should expect for him to be intubated and sedated for most, if not all of the first day. They will attempt to extubatne him either tomorrow night or Friday morning. Please pray for his saturations to SOAR so that he can breathe on his own. This was or biggest challenge last time around but we are believing fully for a better outcome this time around.

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No one will be allowed to see Jack tomorrow after surgery except for me and Josh. This is for his safety as he will be in a very critical state. Once he has had time to be taken off the vent and woken up we will allow our immediate family members to come back and see him. They told us to expect to be there for at least a week but not to be surprised if we stay longer than that. In our experience anything less than a month is a blessing so we will just take it a day at a time.

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We are praying and believing for a miracle. We trust God to provide Jack will an exceptional surgery tomorrow and an amazing and quick recovery. Please pray with us specifically for those things. Our faith is in a God who can move mountains. All glory and honor and praise to Him regardless of what lies ahead for us.

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When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. -Isaiah 43:2

In Oceans Deep

"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." Isaiah 43:2

It's hard to make yourself believe that the fire won't set you ablaze when you can see the fire coming right for you. There's nowhere to run, nowhere to hide. No-one who can stand between you and the fire. Its your fire. And you have to walk into it. And you have to trust that it won't take you down.

There are some days when I know I have the faith of David. The kind of faith that says bring it on Goliath. I'm not scared. Then some days that kind of faith is harder to come by. There are days when I can take a deep breath and step into the furnace 100% sure that I'm ready for whatever may come. But there are other days when the furnace is Goliath and I am NOT David.

Its easy to sing Oceans. To praise the God of the universe and know in my heart that He is sovereign and He LOVES me. But to stand before him and ASK him to lead me where my trust is without borders... Let me tell you friend, you better know what you're asking before you say those words out loud with true conviction. Because He will. And it will be glorious. But that glory lives on the other side of the fire. And there is only one way to get there.

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In our journey with Jack we have experienced many scary days. However, undoubtedly this day four years ago takes the cake. The day Jack crashed. You can find the full story in my older blog posts- Four Days Post-Op. It was just like a scene from Grey's Anatomy. But real. And my baby. And horrifying. And there was no by-passing that fire. As I read back over the blog posts from Jack's post-op hospital stay after the Glenn I'm reminded of all of the bad things that happened. Everyday seemed to bring worse news than the day before. Ultimately I remember the night when he started throwing up blood. I'm no doctor but I know what that means. We were at the end of the line. And the doctors weren't confident that they would find a solution to all of Jack's issues in time.

You don't know fear until you've faced the possibility of losing one of your children. (And for my precious friends who have lived through that nightmare, my love and my heart and my daily prayers for continued strength go out to you.) I wish I could say that I can't imagine, but unfortunately, I can.

I think a lot of times we draw a line in the sand for God. Here Lord, you can have all of these things. Use me any way you want. But these things here behind the line... they're mine. Don't touch them. And let me just tell you...My kids... They aren't anywhere near that line.

But the truth is that the love that we have for our children that feels so deep and so heavy that sometimes the fear of losing them or seeing them get hurt suffocates us, God loves US so much more than that. And when He takes us by the hand and walks us toward the fire, He has a purpose. And it's always for our own good. After all, this life is not about this life at all. It's about our eternal life with him. For today, we're just passing through. And the more we build our faith in Him and allow Him to use us to lead others to Him, the more glory there will be for us when we get to the other side.

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"Spirit lead me where my trust is without borders. Let me walk upon the waters, wherever you would call me. Take me deeper than my feet could ever wander, and my faith will be made stronger, in the presence of my Savior."

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So for today, I'm doing my best to keep my eyes above the waves and to remember that I am His, and He is mine. His plan for Jack far exceeds this chapter of his story. I'm thankful to be used in even a small way but His plan for Jack is BIG. And I can't wait to see what He has in store for him on the other side of this fire.

Guest blogging this week for Mother's Day

A good friend of mine asked me to guest blog on her website this week answering the following question:

What does it mean to you to be a mother?

For those of you who don't follow me on Facebook, here is a direct link to my blog on her website.