"Jack, how old did you turn on your birthday?"
Jack- "Breakfast."
Yes. Very matter-of-factly my son happily tells anyone who is interested in his recent birthday that he turned "breakfast". We don't really know why. But its cute, so we go with it. :)
He knows that he's three years old now and will tell you as long as you don't ask. If you ask, it's "breakfast".
That's just an example of the incredibly lovable personality of my now three-year-old boy.
------------------------------------------
When I was pregnant with Jack I prayed for many things for him. One of those things was for him to have a big personality like his daddy. Growing up, I was always shy. And looking back as an adult, I feel like being shy is hard on a kid. People are drawn to outgoing personalities like that of my husband. So I prayed that God would bless Jack with Josh's extroverted personality. And I believe its safe to say that he did.
Our boy never meets a stranger. He waves and says hello to every stranger we pass in the grocery store. He tries to pick up other people's babies. He sings aloud to his preschool class as they all go to sleep on their cots.
Last night Josh and I were standing in the driveway talking to a neighbor when Jack runs out with no clothes on and announces that he's going to take a bath with the new bath toys that our friend/neighbor had brought him for his birthday.
Prayers answered. He's not shy at all.
------------------------------------------
So for Jack's third birthday we decided on a Toy Story birthday party theme. Not because he watches toy story. If you know this kid at all, you know that he doesn't watch TV. Nope. He's WAYYY too busy to be slowed down by cartoons. And if he ever does watch TV, for about 5 seconds, he wants to watch Golf. Seriously.
Anyway, we chose Toy Story because he has a Toy Story book that is 100% in Spanish- mom's mistake-that he loves because it makes lots of sound effects and we just have to make up the story as we go because we don't read Spanish.
Jack loved his party and thinks that he should get to open presents every day of his life now. Although, most toys go unnoticed next to toothbrushes. We know. Its weird. Our toddler is OBSESSED with toothbrushes. He calls them his TT's and he washes them in the bathtub at least one time everyday. Its really the only time he "plays" by himself so I appreciate the quiet while it lasts. And it lasts a good 20 minutes considering that he has over 100 toothbrushes he has to go through each time. :)
-----------------------------------------
Some other things of note about our boy right now...
-His favorite past time is to "sassle" (wrestle) with his Daddy. I used to be so worried about him being too physically active but as of late I have learned to embrace it and be thankful that he is healthy enough to jump on the bed and get thrown around by his dad. They're making sweet memories that I'm sure he'll treasure until he becomes a dad himself one day.
-We are signing him up for rag ball! Eek! I'm super excited and nervous about this one. We were told that Jack probably wouldn't have the physical stamina to play any sports but he is SO active and healthy so we are going for it. He will wear protective gear and let's be honest, probably just stand there and not really know what to do most of the time anyway. :) But it will be SO cute to watch him in his little ball uniform!
-Jack is still doing GREAT in school! He has learned SO much and loves his teachers and friends. He never complains about going and hasn't cried about being there all year. It's been such a blessing to know he's in such wonderful care and that he's learning and growing all the time. Plus, he's not been sick all year. He keeps a runny nose but nothing doctor-visit worthy. What a blessing!
-We have Jack's three year check up coming up with Dr. Farr and then his six month check up with cardio in a couple of months.
Life continues to fly by as we do our best to soak up the sweet age he is at right now. He is the funniest, silliest boy I have ever met and I must admit that I'm quite smitten with every little thing he does. Like most gushy moms, I wish I could freeze time and keep him small forever BUT since time won't stop, I'm just thankful for everyday that he grows. What a miracle he is.
"And the child continued to grow and to become strong in spirit" Luke 1:80
Tuesday, January 20, 2015
Thursday, January 15, 2015
We Moved... Websites, Not Houses.
Hey y'all! It's been a while.
Right before Jack went into the hospital for his Glen surgery, we moved my blog to his personal website www.prayersforbabyjack.com BUT since our little warrior has been doing SO well for the past two and a half years now, we decided it was time to move on. We officially shut down www.prayersforbabyjack.com a few months ago and I'm just now getting around to getting FacingGoliath back up and going. Life is BUSY y'all! BUT... I am finally getting to the slower part of my year (i.e. not football or basketball season) and I am ready to get back to my regular updates. So... here we are. I tried to let all of myfollowers know I was moving away from www.prayersforbabyjack.com before we shut it down so hopefully everyone will find their way back to my blog's original home here at FacingGoliath. I promise to try to update as often as possible, BUT if you know me and know how busy I am, I'm sure you'll understand if my posts are few and far between.
Let me know what you think about my new FacingGoliath template. I tried to get the heading photo centered but I struggled and then gave up. lol- If you have any tips on that, please help me out. :)
I chose the header photo here of me and my two guys this past summer at Panama City Beach because it just cracks me up. Let's face it, life isn't perfect but this picture is a perfect example of my little family. We're silly. We laugh and play and make messes. We never slow down and are rarely at home together so we consider every minute we have as a family to be a treasure and we definitely soak it up. We're just taking life a day at a time. We try to appreciate the little things and celebrate the big things.
And speaking of BIG things... Jack just turned THREE! More on that to come...
Welcome back friends! :)
Right before Jack went into the hospital for his Glen surgery, we moved my blog to his personal website www.prayersforbabyjack.com BUT since our little warrior has been doing SO well for the past two and a half years now, we decided it was time to move on. We officially shut down www.prayersforbabyjack.com a few months ago and I'm just now getting around to getting FacingGoliath back up and going. Life is BUSY y'all! BUT... I am finally getting to the slower part of my year (i.e. not football or basketball season) and I am ready to get back to my regular updates. So... here we are. I tried to let all of myfollowers know I was moving away from www.prayersforbabyjack.com before we shut it down so hopefully everyone will find their way back to my blog's original home here at FacingGoliath. I promise to try to update as often as possible, BUT if you know me and know how busy I am, I'm sure you'll understand if my posts are few and far between.
Let me know what you think about my new FacingGoliath template. I tried to get the heading photo centered but I struggled and then gave up. lol- If you have any tips on that, please help me out. :)
I chose the header photo here of me and my two guys this past summer at Panama City Beach because it just cracks me up. Let's face it, life isn't perfect but this picture is a perfect example of my little family. We're silly. We laugh and play and make messes. We never slow down and are rarely at home together so we consider every minute we have as a family to be a treasure and we definitely soak it up. We're just taking life a day at a time. We try to appreciate the little things and celebrate the big things.
And speaking of BIG things... Jack just turned THREE! More on that to come...
Welcome back friends! :)
Friday, July 13, 2012
Time Marches On: Two Months Post-Op
It's been a while since my last post and I know you're all probably wondering where we've been and how Jack's doing at home. In our case... No news is definitely good news. We've had a really calm few weeks. I can't even believe that in three days it will be two months since surgery. Time marches on.
Jack has finally reached the point of full recovery. His scar healed up so much better than I could have imagined. I really love it. Its his badge of war and he will wear it proudly. On June 21, we had a visit to clinic and Jack's cardiologist told us that we could come off of oxygen. He had us continue to monitor Jack's sats from home and he did great. Sats didn't change at all. That was a BIG day for us. We celebrated with quite a few tears...mostly mine. At the six week mark we started being able to pick him up under his arms again which was kind of the last milestone we were trying to reach. We were extra cautious at first but now he's back to being thrown into the air like every other little boy. It makes him giggle which makes my heart smile. He's back up to six ounces of breast milk. He's actually eating so much that I can hardly keep up. But this heart mommy knows that this is not a bad problem to have. He is all smiles and giggles these days. He loves his feet so much and he can almost sit up by himself. He reaches for everything and chews on anything he can get into his little mouth. His two teeth are adorable and he drools and chews enough to make me believe that we might see a few more teeth pretty soon. He has absolutely no developmental delays. For the most part, he's just normal perfect.
We went to clinic yesterday where Jack had an ECHO and then we talked with his cardiologist. He told us that Jack's heart looks "pristine" which was beyond amazing to hear. He told us that right now we are going to focus on getting Jack off of two of his meds. We will be going down on his doses each week and we'll continue to monitor his saturations with the pulse ox we have here at home. We don't go back to clinic for TWO WHOLE MONTHS which will be by far the longest we've been without a visit to UAB or an ECHO. We could not have had a better report and we are SO thankful that God has seen fit to provide complete healing for our sweet boy.
We will visit Jack's pediatrician this coming Tuesday for his six month check up and shots. We will also be working with him on getting Jack started on cereal and baby food soon. He wanted us to wait on this step with Jack because he needed as much BM as possible right now because his immune system took a major hit when he got sick in the hospital and then had to be on so many antibiotics. I've been having a really hard time keeping up with him lately though and have had to borrow from my frozen supply. Thank goodness I saved up a stock pile a while back when he wasn't taking as much as I was producing. I am running out now though and we need to start talking about adding in some cereal and then baby food so that he won't need as much BM. Formula is still not an option for me and I truly hope we never have to do formula. I have absolutely nothing against formula. Its just that we tried adding some formula to his bottles a few weeks ago when our supply and demand problem began and it made him very sick. It was awful and I don't want to have to do that again. Plus I know that with him having a less-than-perfect immune system, its just better for him to continue to get all of the nutrients and vitamins that he gets from BM. Please pray for him though as we begin to attempt this transition because we have tried a bit of cereal a few times and it made him sick. I know it takes some getting used to with all babies and I'm sure we'll get there eventually.
Two days ago we celebrated Jack's six month birthday. I can NOT believe that six months has already passed since the day that I held my sweet boy for the first time. This past six months have been the most amazing and most challenging months of my life. I have learned more about myself, my marriage, my family, my community, and my God than I have in my entire life. And let me tell you friends, they are all GOOD. There were moments during each different hospital stay, from the time spent in the RNICU when Jack was born to the time spent in the CICU after surgery where I felt like time was standing still. I longed for the day when I could look over at my son and know that surgery was passed and he was ok. To see him playing and laughing. To not look at him in fear of what was ahead. I told my sister today that for Jack's whole short little life so far, there hasn't been a day that has passed that I didn't carry the weight of the fear of losing him to this disease. My fear was crippling and overwhelming. But today I can truly say that I am not afraid. We are finally passed the hardest step. Yes, Jack still has one more surgery to go and I know that it will be every bit as difficult for us to face when the time comes. But I am choosing not to focus on that right now. I am going to live in this moment and celebrate what God has done, knowing that He will certainly do it again next time around. Because I know in my heart that God's plan for Jack goes far beyond a few short months or years. His plan for Jack is bigger than defeating heart disease, and I have vowed to do my part to raise him to be the extraordinary person that he was created to be so that God can continue to use his life in an extraordinary way for many, many wonderful years to come.
I'm so thankful for every single prayer that has been laid before the feet of our almighty God on behalf of my precious son and my little family. My heart is overwhelmed at the amount of grace that has been poured out over my life and the lives of my husband and son. God is so merciful and so good. His love is overwhelming and unfathomable. I pray that He receives every ounce of glory that comes from our story. And when you say your prayers tonight, you thank him for us too. Thank him for saving our boy. Thank him for saving us all.
Jack has finally reached the point of full recovery. His scar healed up so much better than I could have imagined. I really love it. Its his badge of war and he will wear it proudly. On June 21, we had a visit to clinic and Jack's cardiologist told us that we could come off of oxygen. He had us continue to monitor Jack's sats from home and he did great. Sats didn't change at all. That was a BIG day for us. We celebrated with quite a few tears...
We went to clinic yesterday where Jack had an ECHO and then we talked with his cardiologist. He told us that Jack's heart looks "pristine" which was beyond amazing to hear. He told us that right now we are going to focus on getting Jack off of two of his meds. We will be going down on his doses each week and we'll continue to monitor his saturations with the pulse ox we have here at home. We don't go back to clinic for TWO WHOLE MONTHS which will be by far the longest we've been without a visit to UAB or an ECHO. We could not have had a better report and we are SO thankful that God has seen fit to provide complete healing for our sweet boy.
We will visit Jack's pediatrician this coming Tuesday for his six month check up and shots. We will also be working with him on getting Jack started on cereal and baby food soon. He wanted us to wait on this step with Jack because he needed as much BM as possible right now because his immune system took a major hit when he got sick in the hospital and then had to be on so many antibiotics. I've been having a really hard time keeping up with him lately though and have had to borrow from my frozen supply. Thank goodness I saved up a stock pile a while back when he wasn't taking as much as I was producing. I am running out now though and we need to start talking about adding in some cereal and then baby food so that he won't need as much BM. Formula is still not an option for me and I truly hope we never have to do formula. I have absolutely nothing against formula. Its just that we tried adding some formula to his bottles a few weeks ago when our supply and demand problem began and it made him very sick. It was awful and I don't want to have to do that again. Plus I know that with him having a less-than-perfect immune system, its just better for him to continue to get all of the nutrients and vitamins that he gets from BM. Please pray for him though as we begin to attempt this transition because we have tried a bit of cereal a few times and it made him sick. I know it takes some getting used to with all babies and I'm sure we'll get there eventually.
Two days ago we celebrated Jack's six month birthday. I can NOT believe that six months has already passed since the day that I held my sweet boy for the first time. This past six months have been the most amazing and most challenging months of my life. I have learned more about myself, my marriage, my family, my community, and my God than I have in my entire life. And let me tell you friends, they are all GOOD. There were moments during each different hospital stay, from the time spent in the RNICU when Jack was born to the time spent in the CICU after surgery where I felt like time was standing still. I longed for the day when I could look over at my son and know that surgery was passed and he was ok. To see him playing and laughing. To not look at him in fear of what was ahead. I told my sister today that for Jack's whole short little life so far, there hasn't been a day that has passed that I didn't carry the weight of the fear of losing him to this disease. My fear was crippling and overwhelming. But today I can truly say that I am not afraid. We are finally passed the hardest step. Yes, Jack still has one more surgery to go and I know that it will be every bit as difficult for us to face when the time comes. But I am choosing not to focus on that right now. I am going to live in this moment and celebrate what God has done, knowing that He will certainly do it again next time around. Because I know in my heart that God's plan for Jack goes far beyond a few short months or years. His plan for Jack is bigger than defeating heart disease, and I have vowed to do my part to raise him to be the extraordinary person that he was created to be so that God can continue to use his life in an extraordinary way for many, many wonderful years to come.
I'm so thankful for every single prayer that has been laid before the feet of our almighty God on behalf of my precious son and my little family. My heart is overwhelmed at the amount of grace that has been poured out over my life and the lives of my husband and son. God is so merciful and so good. His love is overwhelming and unfathomable. I pray that He receives every ounce of glory that comes from our story. And when you say your prayers tonight, you thank him for us too. Thank him for saving our boy. Thank him for saving us all.
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us." Ephesians 3:20
Wednesday, June 20, 2012
Welcome Home Baby Jack
After twenty-four long days and nights in the hospital, we finally got the news we'd been waiting for. On Thursday, our nurse practitioner told us that if everything went well over night, we could probably go home in the morning.
After we figured out that Jack was still withdrawing and that was why he seemed to feel so bad all the time, they went back up on his Ativan and kept his Methadone the same. They decided that it would be best to ween him slower, even if that meant sending him home on both drugs. We asked a lot of questions about each of the meds and their affect on him, especially long term, and they explained everything to us and made us feel better about it. He has been on a tiny dose of each drug since we left the hospital and has been weening slowly. Both of these drugs, especially the Ativan just make Jack super chill and not really himself. We didn't really like that he was on either drug but it was certainly better than seeing him as sick and miserable as he was when he was withdrawing. The pharmacy at the hospital set up the prescriptions for us so that each syringe was already filled with the correct dosage so that there wouldn't be any risk of us giving him too much. As the week went by, he went from .3 to .2 to .1, so each different dosage was in a different plastic baggy that was appropriately labeled and our nurse practitioner made a calendar so that we would know exactly when to give what dosage. If you know me well at all, then you should know how much I can truly appreciate that kind of organization. Haha He is now completely off of both of the drugs. He was still withdrawing all the way up until a couple of days ago but it seems like that is almost completely over with now. Thank goodness.
They also sent us home on four other medications. He is on one for his tummy, one for his high blood pressure, one for his fluid output, and one for the pressure in his lungs. All six of these medications, some of them being given two or three times throughout the day, leave us with 15 different dosages of medication throughout each day. Six of them are given at one time in the morning when Jack first wakes up. They're all oral and he HATES them all. It is a serious battle to get all of these meds into him every single time. Sometimes he screams, kicks, and spits it all back out. Other times he is a real trooper. We've tried mixing them with milk.. which he then refuses to drink. We've tried pretty much any trick you can think of and nothing really works. It will be a battle until they tell us we can stop with the meds. We really hate having to give him the meds because of how upset he gets but we just remind ourselves that he needs it and it won't be forever.
They also sent us home on oxygen. They told us that we would have one unit for when we were at home and then something portable for when we go to our doctor appointments and clinic visits. So, Friday morning before we were discharged from the hospital the guy from the med supply company came in hauling this massive amount of equipment that was all for us. He had to teach us how to use everything and it was a big lesson. Not too complicated but there are a lot of parts and a lot to remember. It consists of one massive home unit that will sit in a general location with 50ft of tubing that could pretty much reach anywhere in our house. Then we have 4 large sized tanks for when we're out of the house. Jack is really great about the nasal cannula being on his face. We use medical tape to keep it on his face and try not to change it but every few days because he hates to have the tape pulled off. Most of the time he doesn't notice it. Every now and then we will look over at him and he will have pulled it down into his mouth. Silly boy. :)
Last Tuesday we had Jack's post-op visit with his pediatrician, Dr. Farr. Going out with the portable oxygen tank wasn't too bad. It's on wheels and is kind of hard to steer, especially combined with the stroller. It definitely takes a team. Luckily, my mom and aunt both got to go with me so I had plenty of help. Dr. Farr said that Jack's lungs sounded great which was the main concern after all of the issues we had post-op. He said that everything looked great and the only concern he had was Jack's weight. When we were admitted to the hospital Jack weighed 15 pounds and 7 ounces. When they weighed him on Tuesday he only weighed 14 pounds and 13 ounces. That was exactly what he had weighed 5 weeks earlier at his 4 month check-up. Dr. Farr said that it is imperative that Jack continue to gain weight steadily as he had up until surgery and stay in the average to above average range. He said that weight loss was to be expected after such a rocky hospital stay but that now we have to try to bump him back up to a good weight for his age pretty quickly. So he told me to start adding a teaspoon and a half of calorie adding formula to his milk. When we were in the hospital the lactation specialist spun my milk and figured out that it has 25 calories which is more than formula so that was good news but he hasn't been able to get back to the amount of ounces he was taking before surgery yet which has contributed to the weight loss. Before surgery he was taking 6 ounces every 3-5 hours. After surgery he didn't take any milk at all for 5 days, then he was started back up really slowly and he eventually got to 35CCs an hour which is what he got for the remainder of his stay excluding the time period where we tried to bottle feed him and he threw it all up. The 35CCS an hour was going in through his TP tube and that allowed him to receive a steady amount of nutrition. But, before we could leave the hospital he had to start drinking from his bottle again. We started slowly and reached 2 ounces every 3-5 hours before we left. Now, two weeks later, we are back up to around 5 ounces. He's doing good moving up. It just takes time for his little tummy to readjust after all the trauma its been through.
Other than all of those big things, Jack is doing great at home and is flourishing in his regular environment. He has been struggling with his sleeping because of the withdrawals but is finally starting to sleep a little better. He is playing and laughing all the time and is really getting his little personality back. His days consist of watching cartoons and cuddling with Mommy, playing, eating, napping, and then playing with his Daddy when he gets home from work. His nights consist of a mixture of sleeping and keeping Mommy up...but he's totally worth it. ;)
I can't even begin to express how much God has blessed us through this experience. It's not at all what we asked for....but we've learned SO much along the way. We are SO thankful to be home and to begin the process of putting it behind us and settling back into our normal lives with our sweet boy. His life is even more precious to us now that we have faced the fear of the unknown. We truly see our five month old son as a warrior and he is braver than either of us could ever dream of being. I know in my heart that God allowed this to happen for a very specific reason. Though I can't see it now, I know that someday when I am looking at my son as a grown-up who is an extraordinary man of God, I'll be able to see exactly what God was doing when we were walking through this storm. I believe that whatever God's plan is for Jack, its something big and that he will walk through this life with more purpose than most people do.
Most people say that they can't imagine what we have been though this past month. That's true. I couldn't have imagined it even a short month ago. It's been hard. More difficult than I could ever describe in words. But it made the three of us warriors, I believe. We are stronger and braver today than we were last month. We are forever changed. I am a different person than I was a month ago. I look at my son with determination. We can conquer anything. Though it's not because of any extraordinary power that comes from within ourselves. We are merely people. I can say with full certainty that if it weren't for God's power in my life, this month would have broken me. As a mother, I don't know if I would have survived the pain and frustration of all that the month brought. I don't know how any mother could. Not without God. Not without His grace. But His grace is sufficient. It was sufficient for me this month. It was sufficient for my little family. It brought us through. It saw us through our darkest hour. We didn't just merely survive. We thrived because God's precious grace lifted us up to soar on wings like eagles. (Isaiah 40:31) That's what God's grace does.
I pray that my life has been and will continue to be a living sacrifice to the true and holy God. It's not what I asked for. If He chose to give me what I'd asked for I would be no more than ordinary. I wouldn't be used. I would blend into the background of the world. But God saw fit to use me and my family and no matter the circumstances, I can truly be thankful and give him glory and praise for that. Today, one month later, I am thankful that sometimes God doesn't give us a choice. Sometimes He allows things to happen when He wants to use us that we would naturally choose not to go through. If God asked me today, I would say no. I'm a mother and I would never choose for my son to hurt or to be sick. But I'm thankful for the victory that God has won. And you know whats amazing? He knew what was going to happen all along. He knew, even in our darkest hour, even when my tears were falling and I was begging him on my knees, he knew even then that I would sit here one month later and write to my friends and brothers and sisters in Christ that Jack is home and all is well. He won the victory a LONG time ago. What a MIGHTY God we serve.
"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not harm you. Plans to give you hope and a future." Jeremiah 29:11
But those who put their hope in the Lord will renew their strength. They will soar on wings like eagles. They will run and not grow weary. They will walk and not be faint. Isaiah 40:31
After we figured out that Jack was still withdrawing and that was why he seemed to feel so bad all the time, they went back up on his Ativan and kept his Methadone the same. They decided that it would be best to ween him slower, even if that meant sending him home on both drugs. We asked a lot of questions about each of the meds and their affect on him, especially long term, and they explained everything to us and made us feel better about it. He has been on a tiny dose of each drug since we left the hospital and has been weening slowly. Both of these drugs, especially the Ativan just make Jack super chill and not really himself. We didn't really like that he was on either drug but it was certainly better than seeing him as sick and miserable as he was when he was withdrawing. The pharmacy at the hospital set up the prescriptions for us so that each syringe was already filled with the correct dosage so that there wouldn't be any risk of us giving him too much. As the week went by, he went from .3 to .2 to .1, so each different dosage was in a different plastic baggy that was appropriately labeled and our nurse practitioner made a calendar so that we would know exactly when to give what dosage. If you know me well at all, then you should know how much I can truly appreciate that kind of organization. Haha He is now completely off of both of the drugs. He was still withdrawing all the way up until a couple of days ago but it seems like that is almost completely over with now. Thank goodness.
They also sent us home on four other medications. He is on one for his tummy, one for his high blood pressure, one for his fluid output, and one for the pressure in his lungs. All six of these medications, some of them being given two or three times throughout the day, leave us with 15 different dosages of medication throughout each day. Six of them are given at one time in the morning when Jack first wakes up. They're all oral and he HATES them all. It is a serious battle to get all of these meds into him every single time. Sometimes he screams, kicks, and spits it all back out. Other times he is a real trooper. We've tried mixing them with milk.. which he then refuses to drink. We've tried pretty much any trick you can think of and nothing really works. It will be a battle until they tell us we can stop with the meds. We really hate having to give him the meds because of how upset he gets but we just remind ourselves that he needs it and it won't be forever.
They also sent us home on oxygen. They told us that we would have one unit for when we were at home and then something portable for when we go to our doctor appointments and clinic visits. So, Friday morning before we were discharged from the hospital the guy from the med supply company came in hauling this massive amount of equipment that was all for us. He had to teach us how to use everything and it was a big lesson. Not too complicated but there are a lot of parts and a lot to remember. It consists of one massive home unit that will sit in a general location with 50ft of tubing that could pretty much reach anywhere in our house. Then we have 4 large sized tanks for when we're out of the house. Jack is really great about the nasal cannula being on his face. We use medical tape to keep it on his face and try not to change it but every few days because he hates to have the tape pulled off. Most of the time he doesn't notice it. Every now and then we will look over at him and he will have pulled it down into his mouth. Silly boy. :)
Last Tuesday we had Jack's post-op visit with his pediatrician, Dr. Farr. Going out with the portable oxygen tank wasn't too bad. It's on wheels and is kind of hard to steer, especially combined with the stroller. It definitely takes a team. Luckily, my mom and aunt both got to go with me so I had plenty of help. Dr. Farr said that Jack's lungs sounded great which was the main concern after all of the issues we had post-op. He said that everything looked great and the only concern he had was Jack's weight. When we were admitted to the hospital Jack weighed 15 pounds and 7 ounces. When they weighed him on Tuesday he only weighed 14 pounds and 13 ounces. That was exactly what he had weighed 5 weeks earlier at his 4 month check-up. Dr. Farr said that it is imperative that Jack continue to gain weight steadily as he had up until surgery and stay in the average to above average range. He said that weight loss was to be expected after such a rocky hospital stay but that now we have to try to bump him back up to a good weight for his age pretty quickly. So he told me to start adding a teaspoon and a half of calorie adding formula to his milk. When we were in the hospital the lactation specialist spun my milk and figured out that it has 25 calories which is more than formula so that was good news but he hasn't been able to get back to the amount of ounces he was taking before surgery yet which has contributed to the weight loss. Before surgery he was taking 6 ounces every 3-5 hours. After surgery he didn't take any milk at all for 5 days, then he was started back up really slowly and he eventually got to 35CCs an hour which is what he got for the remainder of his stay excluding the time period where we tried to bottle feed him and he threw it all up. The 35CCS an hour was going in through his TP tube and that allowed him to receive a steady amount of nutrition. But, before we could leave the hospital he had to start drinking from his bottle again. We started slowly and reached 2 ounces every 3-5 hours before we left. Now, two weeks later, we are back up to around 5 ounces. He's doing good moving up. It just takes time for his little tummy to readjust after all the trauma its been through.
Other than all of those big things, Jack is doing great at home and is flourishing in his regular environment. He has been struggling with his sleeping because of the withdrawals but is finally starting to sleep a little better. He is playing and laughing all the time and is really getting his little personality back. His days consist of watching cartoons and cuddling with Mommy, playing, eating, napping, and then playing with his Daddy when he gets home from work. His nights consist of a mixture of sleeping and keeping Mommy up...but he's totally worth it. ;)
<3-------------------------------------------------------<3
I can't even begin to express how much God has blessed us through this experience. It's not at all what we asked for....but we've learned SO much along the way. We are SO thankful to be home and to begin the process of putting it behind us and settling back into our normal lives with our sweet boy. His life is even more precious to us now that we have faced the fear of the unknown. We truly see our five month old son as a warrior and he is braver than either of us could ever dream of being. I know in my heart that God allowed this to happen for a very specific reason. Though I can't see it now, I know that someday when I am looking at my son as a grown-up who is an extraordinary man of God, I'll be able to see exactly what God was doing when we were walking through this storm. I believe that whatever God's plan is for Jack, its something big and that he will walk through this life with more purpose than most people do.
Most people say that they can't imagine what we have been though this past month. That's true. I couldn't have imagined it even a short month ago. It's been hard. More difficult than I could ever describe in words. But it made the three of us warriors, I believe. We are stronger and braver today than we were last month. We are forever changed. I am a different person than I was a month ago. I look at my son with determination. We can conquer anything. Though it's not because of any extraordinary power that comes from within ourselves. We are merely people. I can say with full certainty that if it weren't for God's power in my life, this month would have broken me. As a mother, I don't know if I would have survived the pain and frustration of all that the month brought. I don't know how any mother could. Not without God. Not without His grace. But His grace is sufficient. It was sufficient for me this month. It was sufficient for my little family. It brought us through. It saw us through our darkest hour. We didn't just merely survive. We thrived because God's precious grace lifted us up to soar on wings like eagles. (Isaiah 40:31) That's what God's grace does.
I pray that my life has been and will continue to be a living sacrifice to the true and holy God. It's not what I asked for. If He chose to give me what I'd asked for I would be no more than ordinary. I wouldn't be used. I would blend into the background of the world. But God saw fit to use me and my family and no matter the circumstances, I can truly be thankful and give him glory and praise for that. Today, one month later, I am thankful that sometimes God doesn't give us a choice. Sometimes He allows things to happen when He wants to use us that we would naturally choose not to go through. If God asked me today, I would say no. I'm a mother and I would never choose for my son to hurt or to be sick. But I'm thankful for the victory that God has won. And you know whats amazing? He knew what was going to happen all along. He knew, even in our darkest hour, even when my tears were falling and I was begging him on my knees, he knew even then that I would sit here one month later and write to my friends and brothers and sisters in Christ that Jack is home and all is well. He won the victory a LONG time ago. What a MIGHTY God we serve.
"For I know the plans I have for you," declares the Lord. "Plans to prosper you and not harm you. Plans to give you hope and a future." Jeremiah 29:11
But those who put their hope in the Lord will renew their strength. They will soar on wings like eagles. They will run and not grow weary. They will walk and not be faint. Isaiah 40:31
Wednesday, June 6, 2012
Post-Op Day 21: Three Weeks Later
Three weeks later...
Post-Op Day Twenty-One
Well the biggest thing that has happened around here lately is that we FINALLY got moved to our very own room out on the floor. (For those of you wondering... When I say "floor" I am talking about the Pediatric Cardiology Unit which is where pediatric heart patients go after their stay in the CICU.) We were originally told that we would spend two nights in CICU and two to three nights on the floor. So far we have spent a total of twenty nights in the CICU and we're working on night two on the floor. We've been told that we could make it home by this weekend but it will depend on how Jack does over the next few days with a few different things.
Overall Jack's health has improved greatly in the past week. He is completely infection and virus free right now and his fever has been gone for two whole days. His white blood cell count is down to the lowest its been since before surgery and his inflammation number is zero.
The main focus though has always been on Jack's saturations. His saturations have been doing ok since he was extubated the second time. Most kids in Jack's positions generally sat in the 80s after surgery. Jack gave the doctors a good scare when he started satting in the 50s and 60s but they realized pretty quick that Jack tolerates low saturations and doesn't get too blue like other kids would. They still have high hopes that his sats will rise with time but they don't know how long it will take. The first time he was extubated his sats were really low and he ended up having to be reintubated in an emergent situation in which his sats dropped into the teens. Thankfully, that hasn't happened this time. He isn't having the pressure issues he was having the first time that contributed to his low saturations but also just having some extra time helped give his saturations a chance to slowly rise to a more stable area. This past week when he was still on high-flow oxygen his saturations were really great. They were in the high 70s and low 80s all the time. They changed him over to low-flow two days ago and his sats dropped back down into the high 60s and low 70s, which is not great but is still ok for Jack. Right now he is still on low-flow oxygen at 3 liters and 100%. We are likely going to have to go home on oxygen unless they can ween it and keep his saturations the same. We will see what happens over the next few days as they start the weening process.
Other than weening his oxygen, Jack also has to prove that he can get back into a regular routine with his milk and that has been more of an issue for us than we expected. Jack has always been a great eater and has gained weight well. But, after surgery he didn't have any milk for 5 days and then started tube feeding. He was on the vent for so long that his little tummy got used to the tube feeding that went past his belly and he isn't used to having food in his tummy. Now we are trying to feed him and he is having a lot of trouble. When he does eat well, he usually throws it back up. But mostly its just that he won't eat to begin with. He chews on his bottle and will sip a little bit but won't really get into it like he normally would. He did have a good day with eating yesterday and we thought we were past the rough spot so they pulled his tube out but after a long day of not eating hardly at all today, they had to put the tube back in and start him on tube feeds again. Even though this is a step back, it is important to know that he's getting the nutrition he needs right now. We will continue to try to bottle feed every few hours and see if he will take it. Hopefully over the next day or so he will pick back up with eating and we can pull the tube back out.
We have also had some issues with withdrawals again today. The new CICU doctor for this week sent us out to the floor with the plan to go back up on his withdrawal meds (Methadone and Ativan) because he believes that the fevers and other mysterious symptoms that Jack has had for the past week were from withdrawals. Then the nurse practitioner that was seeing us on the floor changed it back to the weening doses because Jack seemed to be doing so well yesterday and last night. Today, however, has been a rough day for our little man. He has just been super fussy all day and crying like he was sick or something hurt. We held and rocked him all day but nothing really seemed to soothe him. So, the nurse practitioner decided to give him an amped up dose of Ativan to check for withdrawals and he instantly changed. So...withdrawals it is. Now we are going back up a tiny bit on Ativan and just staying the same on the Methadone for tonight. They will continue to try to ween him off of them but they believe its more important that withdrawals don't interfere with his recovery than for him to try to hurry off of the drugs. They have promised us that he will be off of both of them just fine within a few days.
Lastly, as if our poor sweet boy hasn't been through enough already... He got his SECOND tooth today. On top of everything else, Jack has gotten his first two teeth while he has been in the hospital. He's getting oragel and chewing a lot but other than that, he's just extra fussy and doesn't feel good. Hopefully the pain and irritation from that will subside by tomorrow.
I know it still sounds like a lot, but compared to where we were just a week or two ago, its nothing. We know that everything I just mentioned will be better in time. Mostly in just a few more days. The most important thing right now is that we are finally seeing BIG sweet smiles from our baby boy everyday. He feels like playing more now and wants to be held. He's watching lots of Spongebob and just all around seeming more like himself. We are also SO relieve to be here in the room with him. Having our own space is great but the best thing about getting our own room is that he is all ours now. The nurses and doctors come in to check on him often but in between, its just the three of us. We're changing diapers, rocking, playing and cuddling just like we would if we were at home. AND we're here with him all night. Even when he's awake at three in the morning refusing to take a bottle or go back to sleep, we're just thankful to be with him and see his sweet face. God is good my dear friends. He is good to us. He has answered our prayers and I have no doubt that He will continue to do so and we will see great things from this boy in his lifetime.
Post-Op Day Twenty-One
Well the biggest thing that has happened around here lately is that we FINALLY got moved to our very own room out on the floor. (For those of you wondering... When I say "floor" I am talking about the Pediatric Cardiology Unit which is where pediatric heart patients go after their stay in the CICU.) We were originally told that we would spend two nights in CICU and two to three nights on the floor. So far we have spent a total of twenty nights in the CICU and we're working on night two on the floor. We've been told that we could make it home by this weekend but it will depend on how Jack does over the next few days with a few different things.
Overall Jack's health has improved greatly in the past week. He is completely infection and virus free right now and his fever has been gone for two whole days. His white blood cell count is down to the lowest its been since before surgery and his inflammation number is zero.
The main focus though has always been on Jack's saturations. His saturations have been doing ok since he was extubated the second time. Most kids in Jack's positions generally sat in the 80s after surgery. Jack gave the doctors a good scare when he started satting in the 50s and 60s but they realized pretty quick that Jack tolerates low saturations and doesn't get too blue like other kids would. They still have high hopes that his sats will rise with time but they don't know how long it will take. The first time he was extubated his sats were really low and he ended up having to be reintubated in an emergent situation in which his sats dropped into the teens. Thankfully, that hasn't happened this time. He isn't having the pressure issues he was having the first time that contributed to his low saturations but also just having some extra time helped give his saturations a chance to slowly rise to a more stable area. This past week when he was still on high-flow oxygen his saturations were really great. They were in the high 70s and low 80s all the time. They changed him over to low-flow two days ago and his sats dropped back down into the high 60s and low 70s, which is not great but is still ok for Jack. Right now he is still on low-flow oxygen at 3 liters and 100%. We are likely going to have to go home on oxygen unless they can ween it and keep his saturations the same. We will see what happens over the next few days as they start the weening process.
Other than weening his oxygen, Jack also has to prove that he can get back into a regular routine with his milk and that has been more of an issue for us than we expected. Jack has always been a great eater and has gained weight well. But, after surgery he didn't have any milk for 5 days and then started tube feeding. He was on the vent for so long that his little tummy got used to the tube feeding that went past his belly and he isn't used to having food in his tummy. Now we are trying to feed him and he is having a lot of trouble. When he does eat well, he usually throws it back up. But mostly its just that he won't eat to begin with. He chews on his bottle and will sip a little bit but won't really get into it like he normally would. He did have a good day with eating yesterday and we thought we were past the rough spot so they pulled his tube out but after a long day of not eating hardly at all today, they had to put the tube back in and start him on tube feeds again. Even though this is a step back, it is important to know that he's getting the nutrition he needs right now. We will continue to try to bottle feed every few hours and see if he will take it. Hopefully over the next day or so he will pick back up with eating and we can pull the tube back out.
We have also had some issues with withdrawals again today. The new CICU doctor for this week sent us out to the floor with the plan to go back up on his withdrawal meds (Methadone and Ativan) because he believes that the fevers and other mysterious symptoms that Jack has had for the past week were from withdrawals. Then the nurse practitioner that was seeing us on the floor changed it back to the weening doses because Jack seemed to be doing so well yesterday and last night. Today, however, has been a rough day for our little man. He has just been super fussy all day and crying like he was sick or something hurt. We held and rocked him all day but nothing really seemed to soothe him. So, the nurse practitioner decided to give him an amped up dose of Ativan to check for withdrawals and he instantly changed. So...withdrawals it is. Now we are going back up a tiny bit on Ativan and just staying the same on the Methadone for tonight. They will continue to try to ween him off of them but they believe its more important that withdrawals don't interfere with his recovery than for him to try to hurry off of the drugs. They have promised us that he will be off of both of them just fine within a few days.
Lastly, as if our poor sweet boy hasn't been through enough already... He got his SECOND tooth today. On top of everything else, Jack has gotten his first two teeth while he has been in the hospital. He's getting oragel and chewing a lot but other than that, he's just extra fussy and doesn't feel good. Hopefully the pain and irritation from that will subside by tomorrow.
I know it still sounds like a lot, but compared to where we were just a week or two ago, its nothing. We know that everything I just mentioned will be better in time. Mostly in just a few more days. The most important thing right now is that we are finally seeing BIG sweet smiles from our baby boy everyday. He feels like playing more now and wants to be held. He's watching lots of Spongebob and just all around seeming more like himself. We are also SO relieve to be here in the room with him. Having our own space is great but the best thing about getting our own room is that he is all ours now. The nurses and doctors come in to check on him often but in between, its just the three of us. We're changing diapers, rocking, playing and cuddling just like we would if we were at home. AND we're here with him all night. Even when he's awake at three in the morning refusing to take a bottle or go back to sleep, we're just thankful to be with him and see his sweet face. God is good my dear friends. He is good to us. He has answered our prayers and I have no doubt that He will continue to do so and we will see great things from this boy in his lifetime.
Bye Bye to our friends in the CICU <3
Hello to our room on the floor <3
Sunday, June 3, 2012
Post-Op Day 17-18: What a Difference a Day Makes
Post-Op Day 17
These past couple of days have pretty much been dedicated to accomplishing the following things.
1. Maintain good sats (between 75-85)
2. Ween oxygen
3. Stop throwing up/diarrhea
4. Get fever down
5. Start eating
**And an added bonus of sprouting new teeth!**
The mysterious fever has been really throwing everyone for a loop. Jack has been tested for every single possible cause and all tests are negative. The good news is that he doesn't have any infections or other scary issues like that. The bad news is that if we can't figure out where the fever is coming from, we can't figure out how to make it go away. Hence, the waiting game.
In the mean time, we have been battling some throwing up and diarrhea. It started a couple of days ago. Its really traumatic because when he starts throwing up he'll cough and gag and dry heave for a few minutes. He literally gags so hard he stops breathing and his little face turns purple. We have to pat his back really hard to help him. Because he is on the TP tube which delivers the breast milk directly into his small intestine, he has no food in his belly to throw up. He's throwing up stomach acid which is brown and gross. Then two nights ago he threw up blood. The doctor thinks it was possibly caused by a tear in the lining of his stomach or throat because of all of the trauma to them over the past few weeks with all of the tubes going in and out combined with the constant throwing up. It was really a terrifying moment but it only happened that one time and I pray it never happens again.
The diarrhea has been rough because he has the world's worst case of diaper rash and his little bottom just hurts. We have about 4 different creams that we are putting on him every time we change him and hopefully it will start to get better now that the diarrhea has pretty much stopped. It's also rough because every time he poops they have to change his central line dressing because it gets nasty poo germs on it and that could cause an infection. The skin under the dressing is incredibly raw because they keep having to tear tape off of it and put new tape on. He's all broken out and his skin is bright red and so sore but they can't treat it because they have to be able to stick tape to his skin to cover the central line.
His sats have finally started to improve and he is doing really well now off the vent. When he's on 100% high flow oxygen he is satting in the 80s like a rock star. They need to ween him down and then eventually switch him to low-flow before we can go out to the floor so they've been working on that for the past few days. Yesterday they decided to just give it a try. They just went from 5 liters of high flow to 2 liters of low-flow. Jack didn't respond too well and after a few hours of low sats, they had to put him back on high flow. The main problem with that process yesterday was that his little face is as broken out and chapped as his bottom. They keep having to take that tape off of his face and put new tape on every time they adjust his oxygen because he has to get a different nasal cannula for each type of flow. Yesterday it was really bad. His face is all broken out and red and raw. He would scream and cry when they touched it. They kept changing the tape and it was just heartbreaking when they would pull the tape off. It hurt him so bad. Yet again, though, nothing can be done to treat the skin because they have to be able to stick that tape to his skin. Poor baby.
Jack hasn't had a bottle since the night before surgery which was almost three weeks ago now. In babies its dangerous to let them go this long without drinking from a bottle because they lose their ability to suck and swallow. But, because he was on the vent for so long and then his tummy has been sick since he came off the vent, he hasn't been able to try a bottle yet. Today we tried a bottle and he gagged and started dry heaving before he even took the first swallow. We decided not to try again today because its so hard to see him sick like that. We'll try again tomorrow. We also met with someone from speech that talked to us about the therapy that they will do to re-teach Jack how to take a bottle if need be. She also told us about several tests they will do before he can really start drinking anyway. They have to make sure that his vocal cords weren't damaged during surgery and that they can completely close when he swallows so that he doesn't aspirate.
On top of all of the other battles that our sweet boy has been fighting, he actually got his first tooth today. We had noticed that he was really fussy and extra slobbery for the past couple of days but he has been teething for a while now so we didn't think too much of it. People have told us that it usually takes a few months from the time they start teething until they actually get their first tooth. The nurse ordered some oragel from the pharmacy after she noticed how much he was chewing on things. Then when she put the oragel on his gums she felt his little tooth. Josh and I laugh because we never even gave him oragel at home and this evening our doctor came by and told the nurse to give him a dose of Morphine to help with his teething pain. He may be the only baby in the history of the world to get Morphine for teething.
On top of all of the other battles that our sweet boy has been fighting, he actually got his first tooth today. We had noticed that he was really fussy and extra slobbery for the past couple of days but he has been teething for a while now so we didn't think too much of it. People have told us that it usually takes a few months from the time they start teething until they actually get their first tooth. The nurse ordered some oragel from the pharmacy after she noticed how much he was chewing on things. Then when she put the oragel on his gums she felt his little tooth. Josh and I laugh because we never even gave him oragel at home and this evening our doctor came by and told the nurse to give him a dose of Morphine to help with his teething pain. He may be the only baby in the history of the world to get Morphine for teething.
It has been a challenging couple of days but we see small improvements in him each day. Right now we are just happy to see his eyes open and clear and to catch a few tiny smiles here and there. It's a joy to us just to reach the point of him getting his first tooth. There have definitely been those terrifying moments when we weren't sure if we would make it here. What is just a tooth to most people is a BIG moment for us. Our son is alive and getting better each day. He's a real miracle. At this point we feel like we can see the light at the end of the tunnel and we are satisfied with where we are in the journey because as much as we'd love to be home, we're just glad that we aren't in a place of fearing for his life. This place seems safer. Seems closer to home.
Post-Op Day 18
What a difference a day makes!
Today has been a big day for our boy!
1. First of all, his temp has officially migrated down to the low-grade range and stayed there for 24 hours. It's not perfect but much better.
2. We're weening off of most of the pain meds and some of the antibiotics.
3. His diaper rash is way better today. He still screams when its diaper changing time but his bottom looks so much better.
4. Most of his diarrhea is gone and throwing up has stopped completely.
5. His central line area is looking better because it hasn't had to be changed as much today.
Now for the BIG things that happened today...
First thing this morning Jack's oxygen got changed over to low-flow and he is rocking it like an all-star! Sats in the 70s and 80s all day...even when he's mad! Way to go Baby Jack! Dr. Dabal came by and said that if he keeps this up for a few days, we might not have to go home on oxygen!!
Then after lunch we got to take our little man on a wagon ride around the hospital. We loaded up all of his portable equipment and pulled him around for about 15 minutes. He liked it until the end and then he got mad and demanded to be put back into his bed.
Then he took a one ounce bottle of breast milk by mouth and didn't throw up at all. Then later he took a two ounce bottle. This was a HUGE step for him. No therapy. No G-tube surgery. Praise God.
Dr. Dabal told us that at this rate we could be on the floor by Tuesday and home in a week. Today has been the best day. We couldn't be happier with the progress! God is good.
Hebrews 11:1-2 "Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for."
Wednesday, May 30, 2012
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.
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.
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. :)
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.
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. ---
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
Subscribe to:
Posts (Atom)
