Post-Op Day Fourteen: Catching Up

           Two weeks ago today my son had open heart surgery. Even now, after sitting in a hospital for two straight weeks, its hard to believe. I think sometimes that I'll wake up and this will all have been a dream and that Jack will get to be a regular kid. That one day I will be able to watch him run and play in the yard without making him take breaks and watching to see if he's turning blue. That a cold won't be the scariest thing in the world. That a cold will just be a cold.
            But as far as I can tell, I'm not dreaming. But the good news is that God is in control of our little world. And I'm quite certain that He has a BIG plan for my son. If my sweet boy has to be sick and has to go through all of this then at least we can rest in the promise that our God is sovereign. He rules over all people and all things and is in absolute control.
            ....And who wants to be normal anyway? Normal is totally overrated.

<3--------------------------------------------------------<3

Post-Op Day Fourteen


         I am so terribly sorry that I fell off the blog wagon this past week. I have just been staying with Jack as much as I could since he's been awake a lot more and so I haven't had much extra time. I will do my best now to get you guys up to date on what's been going on around here.
        First of all, we're still in the CICU and probably will be for at least a few more days. We've hit a few more bumps along the way but overall he is doing better and it seems like we are finally headed in a good direction. He has a killer team of doctors and nurses who are working diligently to fix him. Last night when we walked back in after shift change, there was a "class" going on where Dr. Jackson was brainstorming with the nurses about how to get Jack's sats up. 

 --- Here is the board she was writing on. ---

        In my last post, we were on day eight and Jack was battling an infection. His lungs were junky and they weren't able to extubate as soon as we had hoped. Jack was put on several antibiotics and since then that infection has completely cleared. They tried for a PICC line in his arm but it failed. A couple of days later they tried again in the other arm and failed again. At this point our poor baby looks quite similar to a used pin cushion. Thankfully. he was knocked out both times and didn't feel the pokes. He does have bruises but they are healing now. The day after the second try for the PICC, the doctor decided to just go for another central line and take out the old one. The point of all of this was that his original central line had been in way too long and was in danger of causing an infection but they needed a good line that they could use to draw blood gasses and give his meds. They finally got the new CL and took out the old one. But before they took the old one out they had sent off blood cultures from that line. Those cultures came back positive for an infection in the blood which was terrifying because when the doctors talked to us about infections they always said that the only infections that scare them are blood infections. They assumed that the blood culture was contaminated because of the line being so old but they couldn't be sure for a couple of days. So, we had to live with that added fear for a few days but it turned out that there was not really any infection in the blood, or anywhere else for that matter.
        His lungs finally started to look clearer and his sats were hanging out in the 50s and 60s but then they discovered a new infection this past weekend, similar to the original one we had just gotten over. Plus he had spiked a fever that we couldn't seem to shake. So, extubation was put off a few more days. BUT, finally on Sunday morning, after nearly two long weeks, it was time. They pulled the tube out and turned the vent off. It was a BIG day. Jack fussed all day because he didn't like the new nasal cannula that they put in his nose and the tube that was still going down his nose into his belly. He tried to pull those out every chance he got which meant me and Josh spent most of the day trying to keep his hands away from his face. He also still didn't feel great because of his fever and so he threw a few little fits. We watch the sat monitor all day praying it would be different this time and he wouldn't have those scary dips in the numbers when he got upset like he did last time he was extubated. It was a long, intense day but this time it was better.
         Over the last few days Jack has kept his fever. He has been tested for every infection and virus that can be tested for and all have come back negative. The doctors seem to think he has some kind of respiratory virus that is keeping his temperature up and his lungs junky. He is coughing hard and throwing up a lot of thick mucus. He will start coughing and then gag and then throw up. Poor baby. The fever is really high and persistent. 
           We are also dealing with withdrawals from all of his pain meds. Our doctor explained to us that 100% of babies who are on the pain meds after surgery become addicted and then withdraw when they are coming off of them. He is now off of the two pain meds he was on and is now on Methadone and Ativan to help ease the transition. The withdrawals have been hard to watch because he shakes and seems really miserable. This morning the doctor decided that the withdrawals were too intense and she decided to go back up on the Methadone and ween him a little bit slower. Hopefully we'll be fully done with the pain meds in a day or two. What's really crazy about all of this is that before surgery, I was reluctant to even give Jack any Tylenol. His dosage was 2.5 mls and I usually gave him 1ml. 
            Just a couple of days ago we started having another problem. He was having a strange side effect to one of the drugs that he really needs. He is on a drug called Sildenafild which is actually Viagra. It dilates the blood vessels in his lungs which helps his heart work more efficiently. Jack really needs this medicine to help with his saturations but this weekend the nurses started to notice that his little "man part" was always standing up when they changed his diapers. They told the doctors about it and they told the nurses to watch it for a while. After several hours of this, they realized that something was wrong. They called the urologists who then came down to look at it. They told us that if it continued to be erect for more than four hours at a time it could possibly cause permanent impotence. The only way to solve this problem was to give him a shot right through his little man part. Funnily enough, when Josh was signing the consent form for them to give him the shot, he just happened to glance in Jack's diaper to check one last time and guess what? It was down. I guess Jack heard what was coming and was not about to let that happen. Haha


  ---------   So, where do we stand right now? 


               Jack still has the massive fever that we can't seem to break just yet but hopefully soon. He is getting fed through an NG tube that goes into his tummy and is tolerating feeds well but won't be able to try a bottle until after his fever breaks and they test him to make sure he can swallow good. He is finally awake and alert for most of the day and his eyes are clear, blue, and beautiful. He is watching Spongebob on the Ipad which we have rigged up to hang from some medical equipment over the side of his bed. He is also playing with toys and being held for most of the day just like he would be at home. No smiles yet but I am determined to get the first smile although Dr. Alten is in a contest with me for that. All of his surgical wounds are pretty much healed and his scar looks great. Tomorrow we even get to start putting onesies on him. :) 

Here's me and Dad holding him. Precious moments. <3

Here's him playing with his giraffe rattle named Geraldine and then watching Spongebob. <3

               Our goal is to break the fever and get him past this virus. Continue to ween him off the meds and Nitric and then eventually ween him down on the oxygen and get rid of the high flow nasal cannula. It's pretty likely that we'll go home on oxygen but we can certainly handle that and it should only be for a couple of months. 
               Jack has been on SO many meds and antibiotics that it will be imperative when we get home that we keep him as healthy as possible. If he were to get sick it would be so much more difficult to get him over it because he has had such heavy doses of so many different antibiotics...Not to mention his heart issues and recent surgery. We will really have to enforce the "no kids" rule for a while and probably keep him at home for a good while. Believe me, nobody hates that more than I do because I LOVE to get my sweet boy out and show him off BUT I will make any and every sacrifice to keep my boy healthy. 
              
-----------    You're talking about when you come home...but are y'all ever coming home?


                Yes! We will be getting out of here eventually. When? We don't know. Right now we have to focus on the fever. Then he has to get off the meds and Nitric. Then we have to ween down the oxygen. Then we have to make sure his sats are living in the high 70s to low 80s consistently. Then we can go out to the floor. Then we can focus on learning to take bottles regularly again. Then once all of that has been accomplished we can talk about going home. Once we get home a home health nurse will be assigned to us who will come and set up our oxygen system and teach us how to use it. She will come every so often to make sure we have what we need and are doing ok. Then we'll start our frequent visits to clinic to make sure everything with his heart is working right. 


----------    Now is definitely not the best time to ask me about the Fontan. After this crazy ordeal, I am currently refusing to come back. Me and Jack are formulating a plan to run away to Mexico to live on the white sandy beaches. NO MORE SURGERY for my boy. Maybe by the time he's two and a half years old I will reconsider. Maybe. 

            <3---------------------------------------------------------<3

"For dominion belongs to the Lord and he rules over the nations." Psalms 22:28

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

"“As the heavens are higher than the earth, so are my ways higher than your way and my thoughts than your thoughts." Isaiah 55:9

       

Post-Op Day Seven and Eight: Bitterness and God's Promises

Post-Op Day Seven


             Jack had a really good day. His temp jumped around but the doctor said that he didn't want to worry about a low grade fever because that just meant that Jack's body was really fighting the infection. His sats were pretty average. Not great, but not bad.
              But the biggest event of yesterday was that Jack opened his eyes for the first time in over a week. --Well, he technically opened his eyes on Saturday when he was extubated but they were foggy and he couldn't seem to focus on anyone. That day it was more scary than happy.-- But this time it was wonderful. His eyes were clear and beautiful. They were Jack's eyes. He opened them and looked right at me and I melted. I love that boy so much. He's my whole world.

Post-Op Day Eight


           Yep. We're still here. Jack had a really good night with his favorite night nurse, Katie. The only little incident in the night was that he started throwing up stomach acid around 8:30 but she quickly put in a second NG tube to catch it since he has the vent tube down his throat and can't really throw up. She caught a lot of the acid at first so they decided to leave the tube in so it wouldn't collect in his tummy. Now its draining through his NG tube but there hasn't been nearly as much since last night.
            This morning we were really hoping for extubation, however his sats were lower and temp was higher this morning than it had been all night. When the doctors made rounds they said that the top section of Jack's right lung has collapsed because of all of the fluid from the tracheitis. Now they are thinking he probably has pneumonia. They are still treating him with the two IV antibiotics and one inhaled antibiotic and they decided that they would just change the vent settings for the day and see if they could get his lung to open back up. If they can't do that by tomorrow morning, they will have a specialist come and give Jack a treatment where they will put a little probe with a video camera down into his lungs and look around then it will spray saline into his lungs and suction out all of the junk. When the doctors came by this evening they seemed to think that his 4:00 x-ray showed improvement in his lung so hopefully by morning it will be all better.
           

<3--------------------------------------------------------<3

            In situations like these, I have found that it is easy to become bitter. It wears on you over time and you start to feel your attitude change. When Jack was born and they told us that he had a heart condition, bitterness was unescapable. I had to work to rid myself of that emotion and it took time and some serious soul searching to come to terms with our new way of life and future. 
            When I went into the hospital in January to give birth to my son, I assumed that it would go exactly as I had pictured it a million times. I never dreamed that it would turn out the way it did. When Josh told me that there was something wrong with Jack's heart, my first reaction was fear and second was bitterness. Why Jack? Why us? Why me? Why not the lady who smoked when she was pregnant? Or the woman who talked about how there's nothing wrong with a drink or two?

           I had to go through a grieving period of some sorts. I experienced the seven stages of grief. First there was the shock and denial. (How is this possible? Is this a dream? This can't be happening to us.) Then pain and guilt. (Was it something I did? Is it my fault he's sick?) Next was anger and bargaining. (I'll do anything if you'll just make him better, God.) Then depression, reflection, and loneliness. (I'm scared of what will happen. I cry all the time.) Then there was the upward turn. (Maybe it's not so bad. If he has to be sick, at least it's this and not that. Things could always be worse.) Next was reconstruction and working through. (I don't like this but I can't change it so I'll just face it.) Then lastly I reached acceptance and hope. (Jack is going to be ok. We will trust God and watch him work a miracle. I'm thankful that He has chosen to use us.)
            As I have come to terms with my son's condition and accepted what our life as a family and Jack's life will be like, I have realized that I would never be strong enough to handle this hand we've been dealt without the love and peace of God in my life. On the days when I start to try to take control of everything, including myself and my emotions, away from God and into my own hands, I sink quickly. Yesterday was one of those days. 
           After 11 days in the hospital... 11 days of not holding my son... 11 days of watching him hurt... 11 days of being constantly terrified... 11 days of watching monitors... 11 days of listening to doctors... 11 days of tears... I got mad. 
           When they made me leave the CICU at 6:30am for shift change, everything looked good. Jack had a good night and was sleeping like a lamb. His sats were up and temp was down. We were thinking that when we went back at 8:30 we would be ready for extubation. However, when we did go back in, things were not how we had left them. His sats were back down and temp was back up. The doctor told us that part of his right lung had collapsed and he had a touch of pneumonia. 
           I was like, "You're kidding, right?" I mean, just when we thought we were on the right track, more bad news? Grrrr.... Right from the beginning of the day I allowed my attitude to plummet. I let anger and frustration rush in and take over. I was suddenly mad at everything and everyone. Baby Jack's soft spoken, ordinarily overly optimistic mom was on hiatus. I was bitter. 
          I won't go into details about everyone who made me mad... We'll just say it was a rough day. I can only imagine what everyone was saying when I wasn't around. "Stay out of Crystal's way. She is in a foul mood." I was just so tired of seeing my baby in that bed. I was tired of watching them stick needles into his skin like it didn't hurt. I was tired of watching the monitors get better, then worse. I was tired of hearing the doctors say maybe tomorrow. I was tired of the new nurse telling me stuff I already knew. Mostly I was just tired...and probably spread a little too thin. 
           Bitterness creeps in like a thief in the night, robbing us of our peace. Even in the midst of the biggest storm of our lives, we can have peace. Ultimately its up to us. We can choose bitterness or we can choose peace. As a result of my day of bitterness I ended the evening feeling guilty, heavy-hearted, and nauseated. And as a result of my bad mood, pretty much everyone else was in a bad mood too. I noticed that everyone else was talking about what a terrible day it was. What an awful nurse we had. What bad news we had received. I realized that as the mom, I set the tone of the day for everyone. I can take yucky news and make it sound like a pretty good report. Or I can take decent news and make it sound like the worst report ever. I guess since I'm the mommy, I get to decide...indirectly, of course. I suppose that nobody wants to be happy if I'm sad and nobody wants to be sad if I'm happy. 


            Natalie Grant describes the battle with bitterness well in her song "Held." 


"This hand is bitterness. We want to taste it. Let the hatred know our sorrow. The wise hand opens slowly to lilies of the valley and tomorrow. This is what it means to be held. How it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was, when everything fell, we'd be held."


              I like the part where she says we want to let the hatred know our sorrow. Sometimes when we grieve, we just have to get mad. It's part of the process. Even though I've been through the grieving process, I am revisiting some of those steps right now. Bitterness is a tough one. It's easy to fall into and hard to pull ourselves back out of. Anger is easy. Why not? Why not blame anyone and everyone else? Why not yell, scream and punch walls. Why not? 
            I don't think God gets made at us for getting angry. I think that He wants us to trust Him and believe in His plan. I think that the more disciplined I become, the less bitter I will be. God's word is full of precious promises that remind us that there is no reason to be bitter. He has a reason why he allows things to happen. He has a plan to get us through. He only allows us to go through as much as we can handle. So, when things seem really bad and our mountains seem really tall...we can rest assured that it only means that God thinks we're strong enough to handle it and brave enough to be tested and used. 


And at the end of every stormy, bitter day... We can always be brought back to life, brought back to our optimistic, uplifted selves by one of God's precious promises... A rainbow. 


Here's my rainbow from yesterday. God is still good. His promises are still steadfast. 

"I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth."       Genesis 9:13

             

Post-Op Days Five and Six

Post-Op Day Five


            This was a relatively uneventful day. Since they decided to let Jack stay on the vent for a few days, there really wasn't much going on. Dr. Dabal came by and talked to me. He told me that Jack does have an infection but they weren't sure where it was. He said that infections are really common and they would just treat it and then try to extubate again. He told me that when babies are on so many pain medications, they become addicted very easily. So, they were going to start him on Ativan and Methadone to help ween him off of the Morphine and other medications he has been on. He said that it was something they pretty much always have to do and really wasn't a big deal. Jack pretty much just slept all day and rested.


Post-Op Day Six


            Jack's temperature started to go up this morning and it scared me, of course. When the doctors came by doing rounds they told us that he had an infection in his airway caused by bacteria in his vent tube. He said it was a common kind of infection and was very treatable. It's called Tracheitis. He is getting two IV antibiotics and one inhaled antibiotic. Our nurse explained to us that he should react well to the antibiotics since he has never had any before. God willing, those antibiotics will knock the infection out completely in the next couple of days and we won't have to worry about that anymore. They did run a test this evening on his inflammation and it came back significantly less than it has been which was a really good sign that the antibiotics are working.
          The main problem right now with the infection is that they can't extubate him again until the infection is gone. The plan to extubate went from hopefully Wednesday to hopefully Thursday or Friday. We are nothing if not patient so we don't mind the wait. We just want our boy better, doesn't matter how long it takes.
           In other news, Jack had two ginormous poops today. I know you probably don't care about my son's poop but he has been having trouble going so it was a big deal. Way to go Baby Jack! Haha :)
           We should get the results of the cultures they drew tomorrow afternoon and hopefully they'll be better than they have been, meaning his infection is dying. His sats are still sitting mostly in the 60s but are slowly improving. They're giving him Tylenol to treat his fever but hopefully that will start to go down too and we can drop the Tylenol. He's getting his PICC line right this minute. By the time we're allowed back in at 8:30 they should be done with that and that will lower his risk of infection related to his Central line which they are taking out as soon as they get his PICC line in.

<3-----------------------------------------------------<3

         We're making progress slowly but surely. Today Dr. Dabal told Josh that he doesn't consider Jack a sick baby. That was reassuring to hear. This situation is such a roller coaster and there are ups and downs every single day. This morning I was bawling my eyes out, terrified. This evening I was laughing my head off, comforted. You never know what they day will bring. My faith in God is the only thing that brings any sort of stability right now. I truly don't know how people go through this without God in their corner. For me, I just constantly remind myself that we are going through this for a reason...BUT we're only going through. It will all be over pretty soon and we'll look back and be able to see the evidence of God being with us through this whole experience.
         I believe in my heart that God does have a plan for Jack far beyond this moment in his life. I believe that God has a plan for Jack as an adult. I always have. Sometimes when fear creeps in it becomes harder to see the bigger picture. It becomes hard to see past this moment. However, I know that God ALWAYS sees the bigger picture. He wrote it. He knows exactly what day Jack will take his first step. He knows that Jack's first word will undoubtedly be "Momma." He knows who Jack will marry. He knows how many souls will spend eternity in heaven because of the impact that my sweet Jack had on the world.
          My comfort is in knowing that Jack is having and will continue to have an impact on this world. God sometimes allows us to go through trials to teach us lessons and also to use us. I believe that we are most certainly learning lessons right now. We're learning about having faith, about how to trust God completely, about how to be patient, about how sometimes God's plan works out so much better than you could have imagined when you just trust him and allow him to do things in His own timing. Sometimes we look back and think, thank goodness that God didn't give us what we were asking for. He most certainly always knows best.

"And therefore the Lord waits to be gracious to you; and therefore He lifts Himself up, that He may have mercy on you and show loving-kindness to you. For the Lord is a God of justice. Blessed are all those who wait for Him, who expect and look and long for Him." Isaiah 30:18

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139: 13-14

   

Post-Op Day Four

Post-Op Day Four


        Jack was still having the pressure headaches all morning on day 4. We stayed at his bedside ready to jump up and console him every few minutes when he would stir and start to cry and thrash around. He started having one particularly bad episode and his sats started falling into the 50s. We didn't make too much of it because he had been doing this all night but then his sats suddenly fell to the 40s, then the 30s, then when they hit the 20s our nurse, Ashley, yelled out for someone to get Dr. Borisino. By the time that he got to Jack's bed, the sats had reached the teens. If the 60s aren't good, imagine how bad the teens are. 
        You could see the panic in their faces as they ran around his bed, throwing stuff and yelling out commands to each other. Suddenly our little corner was filled with doctors and nurses. Dr. Borisino put the oxygen mask on Jack's little face and was bagging him repeatedly trying to get his sats to rise back up while his nurses and other doctors got stuff ready to reintubate. Dr. Borisino was trying to wait to see if he would snap out of it but he never did. After a few minutes, they made the decision and a nurse pushed the paralyzing medicine into his IV. Jack went from crying and thrashing in their arms to completely limp in one second flat. It was terrifying. 
         Dr. Borisino looked back and asked if we were ok to stay and watch this. I couldn't say anything. Josh said yes. Then we watched as they pushed the tube back down his throat and got him set back up on the vent. Then doctor Borisino bagged him some more until his sats rose back up. Then they loaded him back up on medication and got him stabilized again. What sounds like something that happened in a matter of seconds really was about 10 minutes if not longer...and certainly felt like a lifetime. 
          When he was done, Dr. Borisino turned to talk to me and Josh. He explained that Jack wasn't tolerating being off the vent any longer and they didn't really have a choice. They were basically just going to let him rest for a few days and give the pressure in his lungs some time to relax before they extubated him again. Really he would be better off this way because he was in so much pain when he was awake. He explained that they would likely keep him pretty heavily sedated to allow his sats to stay up and give him a few days to adjust a little more to the new pressures. In the mean time, he could sleep and wouldn't be in any pain at all. 
          This whole experience has been traumatic to say the least but if you ask me what has been the scariest moment, it was this one. See, the thing about it was that if the doctor had enough time to explain what was happening before they came over and started tossing our baby around like a rag doll, then it might not have been so bad... but it all happened so fast and was so intense that we weren't sure if Jack was still going to be ok. We knew that they were reintubating him but we didn't know exactly what was wrong or how bad it was. It felt like we were living in a scene on Grey's Anatomy or ER except it was real and it was our son. 
          The moment was so surreal. I was frozen in fear. On the inside I had the strongest need to just go yank all of the cords off of him and just hold him in my arms. Up until this surgery, that was all he ever needed to be ok. I could pick him up and look into his big blue eyes and sing him a song and he would smile up at me as if he were saying, "Thanks Mommy, I feel better now." Standing there watching helpless as a team of doctors and nurses shove needles, tubes, and wires into his lifeless body was horrifying. The worst moment of my life to date. Period. 

<3-----------------------------------------------------------------------<3

       Fear is an emotiion that we can't escape. As human beings, we have been subjected to the feeling of fear every since Eve took a bite of that apple. The Bible says that Adam hid from God because he was afraid. This was the first time that the Bible mentions fear. It didn't take long (The third chapter to be exact.) for God to jump into what appears to be one of His main points throughout the entire Bible. 



But the Lord God called to the man, “Where are you?” He answered, “I heard you in the garden, and I was afraid because I was naked; so I hid.”  Genesis 3:9-10


       Fear is certainly an underlying theme throughout the Bible. God tells his people not to be afraid. He wants us to be able to lean totally upon him and not on our own understanding. Its our own understand from which fear is born and bred. If we can master the art of truly trusting God and overcoming fear, we would find peace and rest like no promise from a doctor could ever provide.
        Why is it that its easier to find comfort in the words of a doctor than in the promises of God himself? After all, only He really knows whats going to happen. A doctor can make me a thousand promises but he doesn't actually know what's going to happen to my son. Only God does...and He doesn't just know what's going to happen. He wrote the story of Jack's life Himself. What more comfort could I possibly need?
       And yet I find myself seeking out our doctors and bombarding them with questions about Jack's condition, his prognosis, and his future. I'm constantly longing to hear them say that he'll live to be an old man with a rocking chair and a bunch of grandkids. And who's to say that heart disease will even be what ends his life? Who's to say that his life will even end? Who's to say that Jesus Christ won't come riding his white horse over the clouds tomorrow morning before all of the answers to my thousands of questions ever even mattered?  
        Now don't get me wrong. I'm not saying that I'm going to stop asking questions any time soon. I'm still human and no matter what amount of faith I can muster, I still have a human heart filled with fear and questions. And I also believe in medicine. I believe that God granted humans the capacity to know and understand how the body works and how to fix things that are broken. 
         It's finding the right balance of the two that takes a real relationship with God. It's a daily walk. To be able to ask our doctors all of the questions and get all of the facts and then lay it all down at the feet of the God who loves me and who most certainly loves my son... It takes a lot of faith. Sometimes I have enough. Other times I fall short. I feel like God understands. Who better understands the love of a parent for their child than our heavenly father? 
         I said all of that to say this... Fear is pointless. It goes against what God wants for us and from us. But that doesn't make it any easier to let go of the fear and trust God. I'm working on that everyday. I haven't quite gotten it figured out yet. Probably never will. But in the eyes of God, working on it is enough. That's what makes our God so amazing. He doesn't expect us to be perfect or to always get it right. He just wants our best. And right now my best is to try....and I'm trying. I really am. 
          
2 Timothy 1:7


“For God has not given us a spirit of fear, but of power and of love and of a sound mind”


Isaiah 41:10


“Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.”


Psalm 23:4

"Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."

Psalm 21:7

"The LORD is my light and my salvation-- whom shall I fear? The LORD is the stronghold of my life-- of whom shall I be afraid?"

Post-Op Day Three

Post-Op Day Three


        This was a very eventful day for our sweet little trooper. His sats weren't great but he was hanging in there for most of the morning. They decided to go ahead and take him off the vent. We were so ready to see our boy without that breathing tube. We were excited about the possibility of him being really awake for the first time since surgery. 
          At 9:33am they pulled the vent tube out of his throat and he got put on heavy flow oxygen. They also pulled the NG tube out at that time. We got to see his precious little mouth for the first time in a few days. His mouth was super dry so the nurses gave us these tiny little sponge-on-a-stick things that we would dip in water and let him suck on. He liked it sometimes and got mad as fire other times. Believe me, if he didn't want it, he'd let you know. 
           As soon as they pulled the vent tube out he started to try to cry but his little throat was too sore to make any real noise. He could only get out faint whispery crys at first but they grew louder and stronger throughout the day. We let him suck on a passy for a while and let him chew on his favorite teething toy, Ernie G. Raff. :) He really went to town chewing on Earnie. He also started really opening his eyes for the first time. It was wonderful getting to see our boy again. We had missed those beautiful eyes. Later they came back and took out both of his pacing wires. Then he also got to get one drainage tube, his catheter, and his head monitor off. What a BIG day! 

         That evening, as Jack started to wake up more and more, he really started to grow more and more fussy. He started to have little episodes where he would wake up and thrash around in his bed. He would cry his sad hoarse little cry and open his foggy eyes as much as he could. He was having headaches related to the pressure change in his head caused by the surgery. As a result of the BD Glenn, the pressure in Jack's head suddenly became the equivalent of a normal person hanging upside down for several hours. This is because his lungs are used to working really hard to pump and now they aren't having to work as hard. Now they are tensing up and pumping blood to his head. Dr. Borisino said this is a normal side effect of the Glenn and would resolve itself when Jack's lungs get used to the pressure and relax. Until then he will have really bad headaches. 
          Although the pressure headaches are normal and expected for Glenn babies, Jack seemed to react much worse than most babies. And because his sats are already low, he doesn't have much reserve for when he gets upset. Meaning, most Glenn babies whose sats are in the 80s might get upset and drop their sats to the 60s. But because Jack's sats are starting in the 60s, when he gets mad and his sats drop, its dangerous. So, besides worrying about how much pain he was in and doing our best to console and comfort him, we were also watching the monitor and worrying about the numbers. It was a tough night for all of us. 

"Our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17

Post-Op Day Two

Post-Op Day 2


         We woke up this day determined that it was going to be a good day. We prayed for a miracle and believed that God would provide.


         It was pretty early when Dr. Dable came around the corner. I was SO happy to see him that I practically knocked people down trying to get to him. He told me that he had emailed me back but I hadn't gotten it because cell phone service at the hospital is non-existant. He instantly began to reassure me about Jack's condition. He said that even though the saturations were still low, Jack was tolerating it well and that is what really matters. He said that they weren't happy with the sats but that they would figure out what was causing them to be so low and how to get them back up. He said that Jack was still going to be ok.


           Why couldn't he have been there the night before when I was desperate for someone to say just that? Maybe God was testing my ability to rely on Him instead of the doctors for my hope and reassurance.


            Message received Lord. Lesson learned.


"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9


           Needless to say that post-op day two was off to a good start already. Jack's sats were still pretty low but we felt reassured that a solution was coming. Not long after Dr. Dable left Jack's bedside Dr. Borisino came by to tell us that he was going to meet with Dr. Dable and Dr. Law and come up with a plan for Jack. They were trying to decide if taking him off the vent was a good idea. They had just ran a test on Jack with the ECHO machine where they put some saline mixed with blood which formed tiny little micro bubbles into his veins then watch where it goes.This test would tell them if any blood was passing the Glenn and going straight to the heart. This could possibly explain why his sats were so low.
          Dr. Law came out of their meeting and told us that they had all agreed to leave Jack on the vent for now and to take him back for another heart cath. They felt like Jack's problem was probably one of two things. Either there was a vein that goes around the BD Glenn that used to be closed but had popped open because of the new pressure in Jack's heart. They assumed this was a possibility because of the results of the bubble test. If this was the case then that vein could be pumping blood past the Glenn and into the heart instead of taking the Glenn route to Jack's lungs. The other thing they were going to check for was just if everything from the surgery looked good. They said that because they already knew that Jack's lungs were healthy before the surgery then if everything from the surgery looked good and was working like it should,  they could safely conclude that Jack's sats were just taking longer to rise to an acceptable number but that given some time, they would.
          Even though we didn't want to have to do another procedure, we were relieved that they were able to promise us that some answers were coming soon. So, we signed the consent forms for the cath. Dr. Borisino also told us that there was a little bit of fluid sitting between Jack's lungs and his chest and they needed to put in a chest tube to drain that fluid. So, we signed the consent forms for that too. Sure, go ahead and put three new holes in our baby, like he hasn't been through enough already...Grrr.   The chest tube went it fine and instantly started to drain a pretty good amount of fluid. They said this would help the lungs to expand all the way and maybe bring his sats up a point or two. Then at 11am, they wheeled him off to the cath lab. It's funny how scared we were a few weeks ago when Jack had his first cath and now, compared to open heart surgery, heart caths are a total walk in the park.
           After waiting, and waiting, and then waiting some more, about three and a half hours to be specific, they called for me and Josh to go back. They told us that everything inside looked great. No open veins carrying blood past the Glenn. No problems with the surgery. Just a few spots on his lungs that were collapsed but that should fix itself when he started moving around, breathing hard, and coughing again. So, what they concluded was that Jack's heart function looked good and his sats will eventually rise on their own. They said that it might take some time and we should be patient but the good news is that there isn't really anything to worry about as long as his numbers stay above 60.


"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil. 4:6-7




          
      

Post-Op Day One

Post-Op Day One:

           This was an extremely challenging day. Challenging our patience, our nerves, and our faith. Jack's saturations dropped to an extremely low point and we saw incredible, experienced doctors panic. There were moments when we were faced with the fear that our son might not make it through all of this. Seeing the faces of the doctors and hearing them make desperate phone calls was beyond scary to say the very least. It was the kind of day that no parent should ever have to live through. We are thankful now that its over and we don't plan to ever have another day like that one. 

          The comfort that we have in being believers is that God is in there with us. When it all becomes too much, He is with us. When our tears fall and our hands shake, He is with us. When we fear the unknown, He is with us. When we face our worst nightmares, He is with us. The peace that transcends all understanding settles in the room with us and we know that He is there and He is in control. His plan will always prevail and it will always be what is best. Trusting may be difficult at times when fear creeps in the back door but He is infinitely patient. Then, when we finally find it within ourselves to trust completely, God delivers on a profound and amazing promise. That if you only have faith, anything is possible. Mountains will move. Praise God for that. 

          Jack's saturations we're lower than normal babies after the BD Glenn. They couldn't figure out why. By that evening, the two doctors that we are familiar and comfortable with (Dr. Law-Jack's cardiologist and Dr. Dable- Jack's surgeon) had gone home and the doctor that was there was the CICU doctor (Dr. Borisino) who seemed insecure and nervous. He made many comments about how scared he was and how he wasn't sure what he was going to do. Needless to say it was a scary time for us. There was talk about a possible need for another surgery. They said that the times that they have had to resort to this surgery in the past, they usually had to go back in two weeks later and undo it. That would be three surgeries in a couple of weeks.They told us that they wanted to avoid that at all costs because the risks would be so much higher now that he has just come out of one surgery and would be going right back into the OR. They continued to tell us how uncommon it was for a baby to have such low sats after this surgery and how they were so unsure about what could be causing it. Also inferring that they had no idea how, or even if, they could fix it. 
       By that night, we had grown scared and desperate. I emailed Dr. Dable and told him that I wanted him to know that Jack's sats were still really low and that Dr. Borisino was scaring us. I apologized for bothering him at home but I needed some reassurance that Jack was still going to be ok. This was the lowest, scariest moment for us. 


Isaiah 43:2 says, "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." 


Never has this scripture been more true in my life than it was on post-op day 2. We passed through the waters that day but the good news is that we were only passing through. There were moments when we may have felt like the waters were sweeping over us, like we were drowning, but we didn't drown. God's word promises us that we will never be asked to carry more than we can bear. Only God knows our breaking point. And what you discover in those moments of desperation is that through God you can find a strength inside of yourself that doesn't really belong to you. That you could never muster on your own. But through God, that strength is there. 


We are warriors. Brave, strong, tough. We are fearless. 


Romans 8:31 asks us, "If God is for us, who can stand against us?" The answer is no one. No fear. No disease. No trial. Praise God, for He loves us and He is good. <3

Surgery Day

Well, we made it through today.

Jack is finally recovering in the CICU. Josh and I got to speak with Dr. Dable and he told us that the surgery went really well. All three procedures went great and they accomplished everything they went in to do. There were a few complications that came up during surgery, the most challenging being a heart flutter and severe bleeding. He is still bleeding now but Dr. Dable said that it should slo...w down and eventually stop on its own. As far as the heart flutter goes, he had the same thing during his heart cath and so they are planning to watch his rhythms closely over the next few days and if need be they will put him on medications to balance it out. The good news is that there is no danger that he will need a pacemaker.
Right now he is sleeping and will be for most of the evening and night tonight. They were planning to try to get him off the vent tonight but then his O2 sats never rose and are sitting in the low 70s so Dr. Dable said that he will leave him on the vent until his sats rise to the 80s and that could be Friday or Saturday. Please pray with us that they begin to rise soon.
Overall this was a successful day and we are on the road to recovery. We’re still in a really critical place and its still scary but we continue to trust that God is taking good care of him. We are SO thankful for all of your prayers and sweet words of encouragement today and we ask that you continue to pray just as hard for his sats to rise and for him to have a quick and easy recovery. We just want to see our smiling boy again soon.
We are so thankful to our amazing God for moving this mountain today. He provided us with a miracle and we know that its because God has big plans for our son to do something extraordinary with his life. God has shown up for us time and time again and we just hope that everyone who is following our story sees the hands of God at work in our sweet boy’s little life. God is BIGGER and is able to do more than we can ask or imagine. ALL of the glory be to Him who does provide.

Jeremiah 29:11/Isaiah 40:31/Ephesians 3:20