Today I talked to my brother. It has been a while since life has been busy for us both. He was just calling to check in. It made me happy and sad to talk to him. I wanted to so badly to tell him JT is rocking it! He's doing great! But he's not. This recovery has taken us on a rollercoaster ride we didn't know we were in line for. I think Jake and I thought this was going to be one that takes you to the top then drops you. Not the case, this has been a rolling, looping, upside down, start and stop kinda ride. We are continuing to try to reduce meds. Not daily by any means, but just one day, really one week at a time. We started to reduce them on about Tuesday or Wednesday this week. We will stay where we are for another week then try to go down a little more.
Our prayers - for wisdom. I sit and I look at him and I have NO IDEA how he is going to go back to school in 3 weeks. I cheered, yes out loud all alone, when he held his head up on his own this week! It was miraculous!
If he can't hold his head up HOW is he going to sit for class for hours on end? How is he going to wheel his chair? How is he going to walk?!? HOW??
I remind myself of scripture I share with my worry wart kiddos (they get it from me!) Do not worry about tomorrow, for tomorrow has enough worries of it's own. Still, as a mom, I worry. My goal, my prayer for myself is to trust! Trust the process, trust the recovery, trust the doctors and most of all, trust God! It sounds easy but when you are a liiiiitle bit of a control freak... it's really the hardest thing to do!
Anyway, pray for wisdom. Do we keep him home an extra week? Do we ask for 1/2 days for a week or two? Do we go back to school and hope he can do it? I don't know, so please ask God to grant us wisdom in what to do and when to do it.
Thanks all! I look forward to the day I can say "WE HAD AN AWESOME DAY!" We just aren't there yet.
Saturday, February 22, 2020
Wednesday, February 19, 2020
Conrerstone
A few weeks before surgery JT requested this song over and over again. We gladly listened and sang and loved it. Then it came on again yesterday and as I sung the words I just melted. My son has wisdom that I cannot wrap my brain around. I believe God placed this song on his heart for a reason, a BIG reason!
A few days ago I wanted to blog about being strong in our weakness. For the first time in a very long time I have let down my guard and let others in. I have asked for help (a very humbling and hard thing for me to do) I have been honest when people ask how he is doing. Not great. It's been really hard. Jake and I are exhausted. Pray for Jake's back as he does almost all of the awkward lifting and carrying.... the list goes on. I have said it before, I will say it again, this journey is NOT one we would have chosen. We would in truth, have gladly passed on this journey. Challenge us another way God. Don't do this to our child God. Give me the pain, give me the burden, the load to carry. It's too big a load for such a small child. Truth be told, I hate this journey. I have been angry with God in the past. I have yelled, cursed (yes, I lit his butt up a few times) I have been so incredibly angry. Oddly, I don't find anger. I am sad, I can be angry especially when he is crying in pain and I cannot help. But I look at JT and I just know he is called to a greater, a higher purpose! His treasures in heaven will far surpass mine! I can only imagine!
Instead of anger I find humility. I am thankfully at peace most of the time. Worried, yes. Sad, yes. Angry, at times, yes. At peace, yes. Hopeful, yes. Thankful for what is to come, yes.
Read this song and if you have time, look it up and listen to it too.
A few days ago I wanted to blog about being strong in our weakness. For the first time in a very long time I have let down my guard and let others in. I have asked for help (a very humbling and hard thing for me to do) I have been honest when people ask how he is doing. Not great. It's been really hard. Jake and I are exhausted. Pray for Jake's back as he does almost all of the awkward lifting and carrying.... the list goes on. I have said it before, I will say it again, this journey is NOT one we would have chosen. We would in truth, have gladly passed on this journey. Challenge us another way God. Don't do this to our child God. Give me the pain, give me the burden, the load to carry. It's too big a load for such a small child. Truth be told, I hate this journey. I have been angry with God in the past. I have yelled, cursed (yes, I lit his butt up a few times) I have been so incredibly angry. Oddly, I don't find anger. I am sad, I can be angry especially when he is crying in pain and I cannot help. But I look at JT and I just know he is called to a greater, a higher purpose! His treasures in heaven will far surpass mine! I can only imagine!
Instead of anger I find humility. I am thankfully at peace most of the time. Worried, yes. Sad, yes. Angry, at times, yes. At peace, yes. Hopeful, yes. Thankful for what is to come, yes.
Read this song and if you have time, look it up and listen to it too.
My hope is built on nothing less
Than Jesus' blood and righteousness
I dare not trust the sweetest frame
But holly trust is Jesus' name
Than Jesus' blood and righteousness
I dare not trust the sweetest frame
But holly trust is Jesus' name
My hope is built on nothing less
Than Jesus' blood and righteousness
I dare not trust the sweetest frame
But holly trust is Jesus' name
Than Jesus' blood and righteousness
I dare not trust the sweetest frame
But holly trust is Jesus' name
Christ alone, Cornerstone
Weak made strong in the Savior's love
Through the storm
He is Lord
Lord of all
Weak made strong in the Savior's love
Through the storm
He is Lord
Lord of all
When darkness seems to hide His face
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil
My anchor holds within the veil
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil
My anchor holds within the veil
Christ alone, Cornerstone
Weak made strong in the Savior's love
Through the storm
He is Lord
Lord of all
He is Lord
Lord of all, Christ alone
Weak made strong in the Savior's love
Through the storm
He is Lord
Lord of all
He is Lord
Lord of all, Christ alone
Christ alone, Cornerstone
Weak made strong in the Savior's love
Through the storm
He is Lord
Lord of all
Weak made strong in the Savior's love
Through the storm
He is Lord
Lord of all
Source: LyricFind
Monday, February 17, 2020
The last 24 hours
Where do I begin.... Yesterday Justin slept almost the entire day. I am not sure if it was the meds, or his body had finally had enough or what. He was more lethargic, couldn't even chew food and we quickly found out that even swallowing was a very challenging task. He woke up at one point towards the late afternoon to go to the bathroom and asked for a drink of water. I brought him his water bottle. He took a sip and then sounds that no parent ever wants to hear came out of him. My son was literally drowning from a sip of water. He was trying to breathe and these gurgling sounds came from his little body as it slightly thrashed, fighting to breathe. FINALLY he caught his breath. He cried and coughed and coughed some more, but his cough was so weak, he couldn't clear the water out. He was still so tired and so weak. He just wanted to go to bed. We put him to bed at around 7pm.
Now, we haven't slept more than 4 hours in a row since his surgery. At midnight I woke up. Nothing! Not a peep. He was still asleep. I laid in bed praying for him, then I went downstairs, knelt beside his bed and prayed some more. I came back upstairs but couldn't sleep, so I went back downstairs to sit in his room and prayed some more. At about 1:30am I decided to come back upstairs. A little scared but trying to trust my big God. I fell asleep around 2:30 or so and about 3:30 JT woke up. I was a little happy he woke up. I went downstairs, gave him his next dose of medicine and he asked to go to the bathroom. I woke Jake up, we took him to the bathroom and back to bed he went. He was crying a little, still trying to cough out the water, still too weak to get it out. He wanted to wake for the day, I said next time he wakes up it could be for the day. He slept until almost 7:30am. (His normal post surgery wake up time has been between 4 and 4:30am) The sleep was a gift to him and a gift to both Jake and I. We were running on empty.
Today was a better day. I spent time in the morning encouraging him to take deep breathes which caused him to cough more. (parenting tip - when your kid swallows water at the pool, have them take deep breathes in, if they cough, they have water they need to get out, if they don't cough, they are fine!) Anyway, he did a great job trying to breath and coughing. He spoke today too. Audible words and coherent sentences. He even did an hour of school. This afternoon we went for a family walk, the warm TX air and the sunshine felt AMAZING! It wasn't a long walk, but it was perfect.
Tonight we are deciding what to do next. He still can't seem to drink water without choking on it. The medications are so heavy in the muscle relaxing area it's just hard for him to coordinate it all. We might go back on a thickener, he used it when he was little. It will be temporary, but at least we should be able to get fluids in him without him choking on them. We don't believe he is ready to pull back on the meds just yet. Last time we did was a disaster and we just want his little body to heal. So, prayers for wisdom in this area are greatly appreciated.
Please also pray for his nerve pain. The muscle spasms we anticipated aren't nearly as bad as the nerve pain we were not prepared for. He is really struggling with that. So much so, I had to call the doctor to ask for a refill of the prescription.
Thank you for walking this walk with us, thank you for joining us in prayer, for your support and love and encouragement.
Now, we haven't slept more than 4 hours in a row since his surgery. At midnight I woke up. Nothing! Not a peep. He was still asleep. I laid in bed praying for him, then I went downstairs, knelt beside his bed and prayed some more. I came back upstairs but couldn't sleep, so I went back downstairs to sit in his room and prayed some more. At about 1:30am I decided to come back upstairs. A little scared but trying to trust my big God. I fell asleep around 2:30 or so and about 3:30 JT woke up. I was a little happy he woke up. I went downstairs, gave him his next dose of medicine and he asked to go to the bathroom. I woke Jake up, we took him to the bathroom and back to bed he went. He was crying a little, still trying to cough out the water, still too weak to get it out. He wanted to wake for the day, I said next time he wakes up it could be for the day. He slept until almost 7:30am. (His normal post surgery wake up time has been between 4 and 4:30am) The sleep was a gift to him and a gift to both Jake and I. We were running on empty.
Today was a better day. I spent time in the morning encouraging him to take deep breathes which caused him to cough more. (parenting tip - when your kid swallows water at the pool, have them take deep breathes in, if they cough, they have water they need to get out, if they don't cough, they are fine!) Anyway, he did a great job trying to breath and coughing. He spoke today too. Audible words and coherent sentences. He even did an hour of school. This afternoon we went for a family walk, the warm TX air and the sunshine felt AMAZING! It wasn't a long walk, but it was perfect.
Tonight we are deciding what to do next. He still can't seem to drink water without choking on it. The medications are so heavy in the muscle relaxing area it's just hard for him to coordinate it all. We might go back on a thickener, he used it when he was little. It will be temporary, but at least we should be able to get fluids in him without him choking on them. We don't believe he is ready to pull back on the meds just yet. Last time we did was a disaster and we just want his little body to heal. So, prayers for wisdom in this area are greatly appreciated.
Please also pray for his nerve pain. The muscle spasms we anticipated aren't nearly as bad as the nerve pain we were not prepared for. He is really struggling with that. So much so, I had to call the doctor to ask for a refill of the prescription.
Thank you for walking this walk with us, thank you for joining us in prayer, for your support and love and encouragement.
Saturday, February 15, 2020
Blessings in the storm
Well, I wish I had better news. I wish I could sit here and say that he is doing amazing and recovering better than expected, but I can't. We tried to pull back on the meds, it's not going well. He has been up the last two nights crying from nerve pain. His hip seems to be recovering okay, but the nerve pain is so intense. He is so tired and crying he can't sleep but wants to. Jake and I agreed that we tried to do too much too soon. For the next 10 days we are going to go back to full medication doses and times.
Today someone was asking how he was doing, I said not great. They asked how Jake and I were doing, I said we are tired and to be honest, it's so hard. We are so helpless I find myself getting angry. Not angry with Justin, but just angry. Angry that I am helpless, angry that I can do nothing to help, angry that I can't take the pain for him.
So where are these blessings?? You don't have to look as hard as you might think. Yesterday I received a message from a friend. She told me that after years of not trusting God for various reasons she started praying again. I started crying. JT's journey is amazing! He brings a smile to the faces of every person he meets. His smile alone can wash away the worries and sadness of the day. This journey is not one Jake or I would have ever chosen. But then I stop to think, how blessed we are to be apart of his story, his journey, his gifts. If one person finds Christ due to the trails we have faced then praise be to God!
God never promises life won't be hard or unfair. In fact, he promises we will face storms and adversity. We WILL not live an easy life, but we CAN live it in his arms. We can have strength, comfort, peace, and so much more in Him.
This life, this journey, it stinks! I can't lie. We are tired, sad watching our son in so much pain. We are truly helpless! In our helplessness we have the joy and the security of turning to the Father who can do all things and who does all things for the good of those who love him and for HIS glory, not ours. We are not here to live our best lives, we are here to live for the glory of God! In that, we will find our best lives and more, eternity with the one who gives everlasting life.
Today someone was asking how he was doing, I said not great. They asked how Jake and I were doing, I said we are tired and to be honest, it's so hard. We are so helpless I find myself getting angry. Not angry with Justin, but just angry. Angry that I am helpless, angry that I can do nothing to help, angry that I can't take the pain for him.
So where are these blessings?? You don't have to look as hard as you might think. Yesterday I received a message from a friend. She told me that after years of not trusting God for various reasons she started praying again. I started crying. JT's journey is amazing! He brings a smile to the faces of every person he meets. His smile alone can wash away the worries and sadness of the day. This journey is not one Jake or I would have ever chosen. But then I stop to think, how blessed we are to be apart of his story, his journey, his gifts. If one person finds Christ due to the trails we have faced then praise be to God!
God never promises life won't be hard or unfair. In fact, he promises we will face storms and adversity. We WILL not live an easy life, but we CAN live it in his arms. We can have strength, comfort, peace, and so much more in Him.
This life, this journey, it stinks! I can't lie. We are tired, sad watching our son in so much pain. We are truly helpless! In our helplessness we have the joy and the security of turning to the Father who can do all things and who does all things for the good of those who love him and for HIS glory, not ours. We are not here to live our best lives, we are here to live for the glory of God! In that, we will find our best lives and more, eternity with the one who gives everlasting life.
Thursday, February 13, 2020
no new is good news?
You know that saying, no news is good news? Well, in this case, I would say that is true. I didn't update last night because it was a decent day. We have started to pull back on JT's meds ever so slightly and are beginning to see more of his personality return. He is sleeping about 4 hour stints at night. Doesn't sound like a lot but when he was originally waking us every 1.5-2 hours that's HUGE progress!
Yesterday we took him to the pediatrician which was exhausting for us all. JT was overtired, and in more pain than usual. I think the longer car ride and the anxiety of it all plus his throat not feeling well just added up (it's not strep).
Today is another BIG day for him! Today we are going to take him to school for about an hour so he can be in his class picture! He is SO excited! I am sure that a lone will knock him down and out.
Pray for him to enjoy his time with his friends and for it to be a blessing and not too much to handle.
We also did something else yesterday - we registered for the Great Bike Giveaway. 5 years ago we registered and didn't win JT a bike. (You can win through most votes, a raffle or donations, we didn't get any of them) About a week or so after it ended I received a phone call from the great bike giveaway - someone, still anonymous to this day donated the rest of the money needed for JT to get a bike!!! I was once told to let an anonymous blessing alone, allow their treasure to be stored in heaven and not on earth. After hearing that, I never tried to see who it was. May their treasure in heaven be so great!
I still remember his first day on the bike! We wondered if he would ever be able to pedal by himself. I remember so vividly the first time HE DID pedal his bike all by himself! Today JT bikes up and down the street with his brothers and it is the most amazingly wonderful thing to see! HE LOVES to ride his bike and not only is it great exercise for him, but it's also great therapy! Strengthening his core and muscles making walker easier. Justin was also able to participate in bike days at school instead of sitting on the sidelines watching everyone else. Sounds silly, but those little things in our world are enormous.
JT has outgrown that bike and so, here we are, seeking votes, donations and praying for a new bike. Special needs bikes can run about $8,000. We are hoping to raise just over $3,000. Yesterday alone we broke $500! What an amazing blessing!
If you want to vote, share the link or donate here it is!
https://www.greatbikegiveaway.com/justinfoulke?tab=Dashboard
Yesterday we took him to the pediatrician which was exhausting for us all. JT was overtired, and in more pain than usual. I think the longer car ride and the anxiety of it all plus his throat not feeling well just added up (it's not strep).
Today is another BIG day for him! Today we are going to take him to school for about an hour so he can be in his class picture! He is SO excited! I am sure that a lone will knock him down and out.
Pray for him to enjoy his time with his friends and for it to be a blessing and not too much to handle.
We also did something else yesterday - we registered for the Great Bike Giveaway. 5 years ago we registered and didn't win JT a bike. (You can win through most votes, a raffle or donations, we didn't get any of them) About a week or so after it ended I received a phone call from the great bike giveaway - someone, still anonymous to this day donated the rest of the money needed for JT to get a bike!!! I was once told to let an anonymous blessing alone, allow their treasure to be stored in heaven and not on earth. After hearing that, I never tried to see who it was. May their treasure in heaven be so great!
I still remember his first day on the bike! We wondered if he would ever be able to pedal by himself. I remember so vividly the first time HE DID pedal his bike all by himself! Today JT bikes up and down the street with his brothers and it is the most amazingly wonderful thing to see! HE LOVES to ride his bike and not only is it great exercise for him, but it's also great therapy! Strengthening his core and muscles making walker easier. Justin was also able to participate in bike days at school instead of sitting on the sidelines watching everyone else. Sounds silly, but those little things in our world are enormous.
JT has outgrown that bike and so, here we are, seeking votes, donations and praying for a new bike. Special needs bikes can run about $8,000. We are hoping to raise just over $3,000. Yesterday alone we broke $500! What an amazing blessing!
If you want to vote, share the link or donate here it is!
https://www.greatbikegiveaway.com/justinfoulke?tab=Dashboard
Tuesday, February 11, 2020
Emotions running high
WHOA!
My head needs to stop spinning first. Between a tweenager, a child recovering from major surgery, a 7 year old in emotional turmoil and twinados I am just whoa.
E went away to a weekend retreat with Wyldlife. It's a junior high version of Young Life and he couldn't love it more! He has been sharing chants and silly stories and stories about how the cross has defeated sin once and for all... he is on a retreat high if I have ever seen one. It's a beautiful gift to witness.
JT is doing okay. Frustrated and his anxiety is really showing through. The anticipation of potential pain is almost as bad as the pain itself. We are beginning to wean him off the big meds but won't go faster than his little body can handle.
C, my sweet C. He is the story of the night. He came into my room with tears in his eyes, arms spread as wide as they could go. He climbed into my arms and started sobbing. I knew the day would come where the stress of this journey would catch up to us all, I just didn't know when or how. He started sobbing that he didn't want me to get old. He didn't want me to have white hair and wrinkles. It's all very cute, but for him it was so real and so heart breaking. We talked about Matthew 6:34 "Do not worry about tomorrow for tomorrow has enough worry of it's own." We talked about what that meant and how we don't want to lose the joys of today by worrying about what might happen years and years and years from now (yes, I have plans to stay young or young looking as long as possible! lol) Truth is, he is learning all about the human body in science, has a human body book he loves to read and his birthday is coming up. Add all that together with the stress of life in our house and BAM! It hit the poor sweet hearted boy like a sledge hammer.
Tonight I ask for prayers for all the boys. Pray for their emotions. I have boys with ADHD, anxiety and they are just highly emotional. They have the biggest hearts but with those hearts come big heart ache too. Pray for their peace. Pray for them to trust Jake and I and more to trust God. Pray for them to have peace that passes understanding. Pray for their big beautiful hearts! Thank God for those hearts and ask God to protect and shield them too.
The twinados are fine - still young enough this hasn't effected them too much. We are seeing more behavior outbursts in school and at home but nothing too crazy.
Thank you for joining with us in this journey, for joining with us in prayer! We appreciate you and your walking with us through this all.
My head needs to stop spinning first. Between a tweenager, a child recovering from major surgery, a 7 year old in emotional turmoil and twinados I am just whoa.
E went away to a weekend retreat with Wyldlife. It's a junior high version of Young Life and he couldn't love it more! He has been sharing chants and silly stories and stories about how the cross has defeated sin once and for all... he is on a retreat high if I have ever seen one. It's a beautiful gift to witness.
JT is doing okay. Frustrated and his anxiety is really showing through. The anticipation of potential pain is almost as bad as the pain itself. We are beginning to wean him off the big meds but won't go faster than his little body can handle.
C, my sweet C. He is the story of the night. He came into my room with tears in his eyes, arms spread as wide as they could go. He climbed into my arms and started sobbing. I knew the day would come where the stress of this journey would catch up to us all, I just didn't know when or how. He started sobbing that he didn't want me to get old. He didn't want me to have white hair and wrinkles. It's all very cute, but for him it was so real and so heart breaking. We talked about Matthew 6:34 "Do not worry about tomorrow for tomorrow has enough worry of it's own." We talked about what that meant and how we don't want to lose the joys of today by worrying about what might happen years and years and years from now (yes, I have plans to stay young or young looking as long as possible! lol) Truth is, he is learning all about the human body in science, has a human body book he loves to read and his birthday is coming up. Add all that together with the stress of life in our house and BAM! It hit the poor sweet hearted boy like a sledge hammer.
Tonight I ask for prayers for all the boys. Pray for their emotions. I have boys with ADHD, anxiety and they are just highly emotional. They have the biggest hearts but with those hearts come big heart ache too. Pray for their peace. Pray for them to trust Jake and I and more to trust God. Pray for them to have peace that passes understanding. Pray for their big beautiful hearts! Thank God for those hearts and ask God to protect and shield them too.
The twinados are fine - still young enough this hasn't effected them too much. We are seeing more behavior outbursts in school and at home but nothing too crazy.
Thank you for joining with us in this journey, for joining with us in prayer! We appreciate you and your walking with us through this all.
100%
When Jake and I were newlyweds we learned that marriage isn't 50/50, it's 100/100. You give 100% of yourself, your love, your time 100% of the time. Why? because there will be times when your spouse won't have 100% to give. Maybe it's a rough day, maybe they are sick, maybe their plate is just too full. Over the years it's turned into a joke. The kids see us fighting, playfully, over doing the dishes. They hear us say things, like " you are taking my 100%" while laughing. They watch us snag the lawn mower and mow or move the laundry or whatever it may be. Well, tonight Jake stole my 100%.
JT was having a good night! We were able to bump his pain meds back a few hours. Our goal is to not wake him for meds, but for his body to tell us when he needs them. It's going pretty well, until midnight. He woke upset and in pain, reasonable because he was several hours behind on his meds. We gave him meds and back to sleep he went. Then at 1am he woke again, no problem, we still had more meds to give (I try to spread them out and not give everything at once). He just couldn't get comfortable in bed. Jake picked him up and moved him to the sofa, then I went upstairs to grab a pillow so I could sleep on the sofa with JT. Yeah, no, that thief of a husband had already laid down on the sofa with a blanket and was half asleep. The man has an insane ability to fall asleep in like .05 seconds! Anyway, he and JT are on the sofa and I am up in bed writing you. My 100% was cut off by his 100%.
It's okay, I will get him back later today I am sure! hahaaa.
For now, know that the pain isn't going to magically go away but we feel we are making progress. He is off the codine and has been since his first night home. That's a huge win. We are going to be woken for the next week or so for pain management and as I tell people, each day is a sliver in the right direction.
Come to think of it, tonight might be a little harder simply because he had his first day of homebound school with his teacher. He did very well and worked hard for an hour. It was a lot of work for a tired, little boy who still isn't eating much and is on pain medications.
Pray for his pain!
Pray for his appetite. It's coming back ever so slowly but pray for an increase in that.
Pray for his sleep.
Pray for his energy level to grow with each passing day
Pray for God to continue to move in our lives and in the lives of those around us. God's plan for JT isn't what Jake or I would have ever chosen but man it's amazing to be apart of and to watch!
JT was having a good night! We were able to bump his pain meds back a few hours. Our goal is to not wake him for meds, but for his body to tell us when he needs them. It's going pretty well, until midnight. He woke upset and in pain, reasonable because he was several hours behind on his meds. We gave him meds and back to sleep he went. Then at 1am he woke again, no problem, we still had more meds to give (I try to spread them out and not give everything at once). He just couldn't get comfortable in bed. Jake picked him up and moved him to the sofa, then I went upstairs to grab a pillow so I could sleep on the sofa with JT. Yeah, no, that thief of a husband had already laid down on the sofa with a blanket and was half asleep. The man has an insane ability to fall asleep in like .05 seconds! Anyway, he and JT are on the sofa and I am up in bed writing you. My 100% was cut off by his 100%.
It's okay, I will get him back later today I am sure! hahaaa.
For now, know that the pain isn't going to magically go away but we feel we are making progress. He is off the codine and has been since his first night home. That's a huge win. We are going to be woken for the next week or so for pain management and as I tell people, each day is a sliver in the right direction.
Come to think of it, tonight might be a little harder simply because he had his first day of homebound school with his teacher. He did very well and worked hard for an hour. It was a lot of work for a tired, little boy who still isn't eating much and is on pain medications.
Pray for his pain!
Pray for his appetite. It's coming back ever so slowly but pray for an increase in that.
Pray for his sleep.
Pray for his energy level to grow with each passing day
Pray for God to continue to move in our lives and in the lives of those around us. God's plan for JT isn't what Jake or I would have ever chosen but man it's amazing to be apart of and to watch!
Sunday, February 9, 2020
Past and present
It's amazing how God uses your past to help you make it through events in your future. Two nights ago, being woken every three hours by JT was like having a newborn again. Last night was a step forward but felt like a step backwards. Last night we were reminded of the days with NICU babies. We had to wake JT every 3-4 hours for medicine. Jake and I made it through those days once, we can do it again! Still, those memories fade but never go away. We had so many long nights and these days are no different, except we are older and take longer to recover. HA!
Last night was full of answered prayers! The weather was calling for thunder storms. JT is not only scared of them, but each rumble of thunder makes him startle. We were so worried about storms last night. We asked people to pray specifically that if there was thunder it not start until later today. That prayer was answered 100%! Not a single rumble of thunder was heard throughout the night.
Today our continued prayer is for pain management and that we can slowly wean off the medications. We are beginning to space out some of the bigger/heavier meds already. It seems to be going well.
I have to tell you, it's hard to see your child absence of their personality. His smile is here and there, his laughter only comes after one of the medications. He slurs his words so badly we can hardly understand him. I miss my son. Each day I see glimpses of him and I pray that each day will continue to see more and more of him.
Pray for Jake if you would. He is doing 90% of lifting and carrying JT right now. He is 45lbs of dead weight and on top of that Jake has to manage his position as to not hurt him. Jake's back is beginning to hurt, so pray for supernatural strength.
Praise and prayer - Jt is starting to eat more but still has yet to eat a meal. His body is so tired and so full of medications. We are doing our best to give him protein shakes and yesterday I made him a milkshake. At this point anything fatty is good! Pray for his appetite to come back sooner rather than later.
Last night was full of answered prayers! The weather was calling for thunder storms. JT is not only scared of them, but each rumble of thunder makes him startle. We were so worried about storms last night. We asked people to pray specifically that if there was thunder it not start until later today. That prayer was answered 100%! Not a single rumble of thunder was heard throughout the night.
Today our continued prayer is for pain management and that we can slowly wean off the medications. We are beginning to space out some of the bigger/heavier meds already. It seems to be going well.
I have to tell you, it's hard to see your child absence of their personality. His smile is here and there, his laughter only comes after one of the medications. He slurs his words so badly we can hardly understand him. I miss my son. Each day I see glimpses of him and I pray that each day will continue to see more and more of him.
Pray for Jake if you would. He is doing 90% of lifting and carrying JT right now. He is 45lbs of dead weight and on top of that Jake has to manage his position as to not hurt him. Jake's back is beginning to hurt, so pray for supernatural strength.
Praise and prayer - Jt is starting to eat more but still has yet to eat a meal. His body is so tired and so full of medications. We are doing our best to give him protein shakes and yesterday I made him a milkshake. At this point anything fatty is good! Pray for his appetite to come back sooner rather than later.
Saturday, February 8, 2020
The first 24 hours
Well, we have been home for 24 hours now and we are all doing ok. The boys were all so happy to see Jt after school yesterday.
Last night was a rough one, harder than the last two nights in the hospital. The meds seemed to wear off about 30 minutes before the next dose. He woke almost hyperventilating more than once. Tonight we will continue the night with medications with the hope that we can start to wean him off starting on Monday. The weaning phase will take about 2 weeks.
It's hard to see him on so many medications. They make him so lethargic he drools, can hardly speak... We are starting to see glimpses of him again, smiles, laughs, excitement at hearing a friend or two was going to visit. I look forward to seeing more of him each day.
As for prayers, please pray for the nights, they seem so much harder than the days. He woke us about every 3 hours last night, pray his body is able to rest more completely today.
Pray for the boys too. They have been wonderful, but it's not easy for 4 boys to stay quiet all the time! They are all so kind and compassionate, but it's not easy.
Pray for supernatural strength and energy for Jake and I. We are both tired from our nights in the hospital and tired from our nights at home. I couldn't imagine walking this path without Jake by my side every step of the way. He is truly the most incredible husband and daddy, I am so amazingly blessed!
Last night was a rough one, harder than the last two nights in the hospital. The meds seemed to wear off about 30 minutes before the next dose. He woke almost hyperventilating more than once. Tonight we will continue the night with medications with the hope that we can start to wean him off starting on Monday. The weaning phase will take about 2 weeks.
It's hard to see him on so many medications. They make him so lethargic he drools, can hardly speak... We are starting to see glimpses of him again, smiles, laughs, excitement at hearing a friend or two was going to visit. I look forward to seeing more of him each day.
As for prayers, please pray for the nights, they seem so much harder than the days. He woke us about every 3 hours last night, pray his body is able to rest more completely today.
Pray for the boys too. They have been wonderful, but it's not easy for 4 boys to stay quiet all the time! They are all so kind and compassionate, but it's not easy.
Pray for supernatural strength and energy for Jake and I. We are both tired from our nights in the hospital and tired from our nights at home. I couldn't imagine walking this path without Jake by my side every step of the way. He is truly the most incredible husband and daddy, I am so amazingly blessed!
Friday, February 7, 2020
Power of prayer
Those that know me know that I am a firm believer in the power of prayer. I believe in miracles, I have seen a miracle and that one witness forever changed me. Often times people pray because it makes them feel good or because it's the only thing they can do to help. I appreciate those people, but what they need to know is that it's not the ONLY thing they can do, it's the BEST thing they can do.
Last Sunday our church laid hands on our family and prayed for JT and for us. Did recovery go exactly as we'd hoped, no, but at the same time, Jake and I weren't shocked. The doctor told us 2-3 days, all our research said 3-5 days. Our doctor took a chance on JT (in a good way) and chose not to put him in a spica cast. This one decision will, and has, in the beginning cause him more discomfort because his body can move. What people don't know or see is that this one move which initially caused him so much pain will in the long run pay off HUGE! He will be able to move his muscles and stretch so that when it is time to begin therapy he will be able to without being in excruciating pain. What a blessing!
This week our pastor did one other amazing thing, something that hasn't happened to us since we had the twins at 26 weeks. He asked if he could come to the hospital to pray for JT. The quick answer was YES PLEASE! He came to check on us, wearing a cowboys hat... took everything in me not to kick him out right then and there! (hahaaaaa, kidding, of course. We always love good friends with a good rivalry) Seriously though, he came in, visited for a bit then prayed for us and for Justin! I know it sounds like 'well that's what a pastor should do' or 'isn't that what they are there for'. You'd think, but again, the last time a pastor did that with us and for us was back in NOVA when the twins were born. So, yes, the should, but often times they don't. Our pastor had to drop what he was doing, work, writing his sermon, caring for others, church meetings and we are so deeply thankful.
The next day JT had a complete turn around!
Do I believe that one act did it all, it could have, but I also believe in modern medicine. I believe in his doctor, her care for him. I believe that God works for the good of those who love him. I believe that having people talk to him on behalf of others is a gift to Him but also to them. God wants to know us deeply and he wants to be known deeply. How deeply do you get to know someone if you pray once or twice? I believe that God has and will always use JT to draw others closer to Him. He loves us more than we love our own children. (hard to fathom, but true) How would you feel if your kids never spoke to you unless they were hurt.
Today I want to thank you for your prayers! I believe that each and every prayer was heard. I believe that God's timing is perfect, never my own, but it's still perfect.
For those that don't know - JT comes from the first time I went into labor with Justin. I was 24 weeks pregnant. We were in the room and I said to Jake "What do you think of the name Justin?" Jake in true Jake form "Can his middle name be time? Like JUST IN TIME!" I told Jake the name was a goner.... Justin was born at 29 weeks. His name is Justin Richard, named after my older brother whom I had lost. His nickname, JT is for JUST IN TIME - God's perfect timing!
There is one thing I know, God will always work for his glory and plan and that JT is a huge part of that plan! He touches the lives of everyone he knows. He leads people to prayer when they might not otherwise. He is Justin God's perfect time!
Last Sunday our church laid hands on our family and prayed for JT and for us. Did recovery go exactly as we'd hoped, no, but at the same time, Jake and I weren't shocked. The doctor told us 2-3 days, all our research said 3-5 days. Our doctor took a chance on JT (in a good way) and chose not to put him in a spica cast. This one decision will, and has, in the beginning cause him more discomfort because his body can move. What people don't know or see is that this one move which initially caused him so much pain will in the long run pay off HUGE! He will be able to move his muscles and stretch so that when it is time to begin therapy he will be able to without being in excruciating pain. What a blessing!
This week our pastor did one other amazing thing, something that hasn't happened to us since we had the twins at 26 weeks. He asked if he could come to the hospital to pray for JT. The quick answer was YES PLEASE! He came to check on us, wearing a cowboys hat... took everything in me not to kick him out right then and there! (hahaaaaa, kidding, of course. We always love good friends with a good rivalry) Seriously though, he came in, visited for a bit then prayed for us and for Justin! I know it sounds like 'well that's what a pastor should do' or 'isn't that what they are there for'. You'd think, but again, the last time a pastor did that with us and for us was back in NOVA when the twins were born. So, yes, the should, but often times they don't. Our pastor had to drop what he was doing, work, writing his sermon, caring for others, church meetings and we are so deeply thankful.
The next day JT had a complete turn around!
Do I believe that one act did it all, it could have, but I also believe in modern medicine. I believe in his doctor, her care for him. I believe that God works for the good of those who love him. I believe that having people talk to him on behalf of others is a gift to Him but also to them. God wants to know us deeply and he wants to be known deeply. How deeply do you get to know someone if you pray once or twice? I believe that God has and will always use JT to draw others closer to Him. He loves us more than we love our own children. (hard to fathom, but true) How would you feel if your kids never spoke to you unless they were hurt.
Today I want to thank you for your prayers! I believe that each and every prayer was heard. I believe that God's timing is perfect, never my own, but it's still perfect.
For those that don't know - JT comes from the first time I went into labor with Justin. I was 24 weeks pregnant. We were in the room and I said to Jake "What do you think of the name Justin?" Jake in true Jake form "Can his middle name be time? Like JUST IN TIME!" I told Jake the name was a goner.... Justin was born at 29 weeks. His name is Justin Richard, named after my older brother whom I had lost. His nickname, JT is for JUST IN TIME - God's perfect timing!
There is one thing I know, God will always work for his glory and plan and that JT is a huge part of that plan! He touches the lives of everyone he knows. He leads people to prayer when they might not otherwise. He is Justin God's perfect time!
Thursday, February 6, 2020
Leaping
Today has been amazing! My hope is that we didn’t over do it. If he can make it today and tonight like this.... I think we MIGHT be homebound tomorrow!
Today the physical therapist came in, she’s actually been here daily but hasn’t been able to do anything with the epidural in. She told us to move him and to help him move himself... after watching your child in so much pain it’s easy to say “no, just leave him! He’s comfortable!” However, knowing that moving is essential to get strong and in the long run reduce pain, you do it!
She and Jake worked to love JT THREE TIMES! That’s a lot for day one.
She wants him sitting up 30 min a day.
I was planning on staying the night but we might have hit the transition point. With my back I can’t lift JT alone. I have 30 minutes to either sa
stay or go back home with the other boys.
It sounds like an easy decision, trust me, it’s not! It’s hard. Hard to know what’s best. Hard to put my heart aside to make the sacrificial decision.
I want to stay! I WANT, but is that what’s best for JT?!?
I’m off to pray and do what’s best for my boy.
Enjoy the pics!
Today the physical therapist came in, she’s actually been here daily but hasn’t been able to do anything with the epidural in. She told us to move him and to help him move himself... after watching your child in so much pain it’s easy to say “no, just leave him! He’s comfortable!” However, knowing that moving is essential to get strong and in the long run reduce pain, you do it!
She and Jake worked to love JT THREE TIMES! That’s a lot for day one.
She wants him sitting up 30 min a day.
I was planning on staying the night but we might have hit the transition point. With my back I can’t lift JT alone. I have 30 minutes to either sa
stay or go back home with the other boys.
It sounds like an easy decision, trust me, it’s not! It’s hard. Hard to know what’s best. Hard to put my heart aside to make the sacrificial decision.
I want to stay! I WANT, but is that what’s best for JT?!?
I’m off to pray and do what’s best for my boy.
Enjoy the pics!
Up and down and all around
This journey reminds me so much of the NICU. Riding a rollercoaster in the dark. when you think it's going up it goes down, right is left and so on. The ups come and the downs to too. Each step forward is followed by what feels like 3 steps backwards. Still, each day is better in small ways so we will focus on that.
Yesterday afternoon I left to head home for the night. C had a thing at school I really wanted to go to for him. Jake stayed the night last night. He said JT slept through the night!
I am a little jealous since I had about 6 hours sleep in 2 days but I am more thankful than jealous.
Last night they removed his epidural and today they stopped the morphine drip. He is still on some pretty heavy pain meds but all in all, he is doing better! This morning, while I was at school Jake sent me a video of JT singing in his microphone! WHOOHOOOOOO!
When I arrived today JT was sweating. His fever spiked this morning to 100.4. They originally thought it might be croup but now they think his lungs are just not recovering and are struggling. What do we do for that?! BUBBLES! JT has to blow bubbles every hour. What a fun way to help your lungs regain strength. He even chose to show me how he was doing, it was pretty awesome.
He is still complaining that his hip hurts, but when you have gone from screaming in agony to moaning to just complaining about it... we are on the right track.
He had a blood transfusion yesterday but I am guessing they will do another one sometime tomorrow. He is already looking more pale than he did this morning.
His doctor came in this morning. She told Jake that if we can't manage the pain with meds today (no epidural, no morphine drip) than he might need a spica cast. Sadly, that will mean another procedure, more anesthesia, most likely more vomiting and about 30lbs of added weight for us to maneuver.
We are hoping that he doesn't need one.
For now his pain seems to be under control. His appetite is slow to return, but that is normal too.
Pray that the medications continue to keep him comfortable. Pray that we are able to be discharged on Friday. I don't want to rush him out of here by any means, but I also don't want to stay one moment longer than we have to.
Yesterday afternoon I left to head home for the night. C had a thing at school I really wanted to go to for him. Jake stayed the night last night. He said JT slept through the night!
I am a little jealous since I had about 6 hours sleep in 2 days but I am more thankful than jealous.
Last night they removed his epidural and today they stopped the morphine drip. He is still on some pretty heavy pain meds but all in all, he is doing better! This morning, while I was at school Jake sent me a video of JT singing in his microphone! WHOOHOOOOOO!
When I arrived today JT was sweating. His fever spiked this morning to 100.4. They originally thought it might be croup but now they think his lungs are just not recovering and are struggling. What do we do for that?! BUBBLES! JT has to blow bubbles every hour. What a fun way to help your lungs regain strength. He even chose to show me how he was doing, it was pretty awesome.
He is still complaining that his hip hurts, but when you have gone from screaming in agony to moaning to just complaining about it... we are on the right track.
He had a blood transfusion yesterday but I am guessing they will do another one sometime tomorrow. He is already looking more pale than he did this morning.
His doctor came in this morning. She told Jake that if we can't manage the pain with meds today (no epidural, no morphine drip) than he might need a spica cast. Sadly, that will mean another procedure, more anesthesia, most likely more vomiting and about 30lbs of added weight for us to maneuver.
We are hoping that he doesn't need one.
For now his pain seems to be under control. His appetite is slow to return, but that is normal too.
Pray that the medications continue to keep him comfortable. Pray that we are able to be discharged on Friday. I don't want to rush him out of here by any means, but I also don't want to stay one moment longer than we have to.
Wednesday, February 5, 2020
Morning update
Well, I wrote this once but then accidentally deleted it. We will blame sleep deprivation.
Doctor came in this morning. She is seriously the best! I wouldn't want anyone else to work with. A straight shooter, which I have truly come to appreciate in doctors. I have found the best doctors are confident yet humble, straight shooters but with kindness and compassion and willing to stand and talk and answer all of your questions. She is all of the above! We are thankful for her.
This morning she thought JT might need a blood transfusion. She said if his levels were below 7 he would need a unit of blood. We just got word his level is 5.1. It's okay though, we have no fear in this. I have been in his shoes and I know how much a blood transfusion can turn things around. That is our prayer. We are hoping and praying that the transfusion will be the flip of the coin he needs to get through this with more strength and less pain.
Sometime this morning they will do the blood transfusion, then begin the morphine drip. Once that has a time to get going they will turn off the epidural. An hour later they will remove the epidural. About 4 hours after that they will remove his catheter (we are all looking forward to that!).
The doctor saw one of his muscle spasms this morning and decided to double his valium. She said if he is going to be knocked out on meds, this is the place to do it. We can then back off and figure out the right dose.
Jake and I are in good spirits. We have peace even as JT is moaning and whining in pain. We know that we are blessed and we are so thankful that this is temporary. Today as I was rubbing his head and catching his vomit I found myself thankful. I thought of my friends who have had to rub their childs head and catch their vomit knowing they were also saying goodbye. I found myself longing to see JT again, his smile, his personality, his joy, the sparkle in his eye yet knowing I will again soon just brought immense peace.
God is good, we are blessed. We are uplifted and surrounded by prayers and we are in the arms of God our Father.
Doctor came in this morning. She is seriously the best! I wouldn't want anyone else to work with. A straight shooter, which I have truly come to appreciate in doctors. I have found the best doctors are confident yet humble, straight shooters but with kindness and compassion and willing to stand and talk and answer all of your questions. She is all of the above! We are thankful for her.
This morning she thought JT might need a blood transfusion. She said if his levels were below 7 he would need a unit of blood. We just got word his level is 5.1. It's okay though, we have no fear in this. I have been in his shoes and I know how much a blood transfusion can turn things around. That is our prayer. We are hoping and praying that the transfusion will be the flip of the coin he needs to get through this with more strength and less pain.
Sometime this morning they will do the blood transfusion, then begin the morphine drip. Once that has a time to get going they will turn off the epidural. An hour later they will remove the epidural. About 4 hours after that they will remove his catheter (we are all looking forward to that!).
The doctor saw one of his muscle spasms this morning and decided to double his valium. She said if he is going to be knocked out on meds, this is the place to do it. We can then back off and figure out the right dose.
Jake and I are in good spirits. We have peace even as JT is moaning and whining in pain. We know that we are blessed and we are so thankful that this is temporary. Today as I was rubbing his head and catching his vomit I found myself thankful. I thought of my friends who have had to rub their childs head and catch their vomit knowing they were also saying goodbye. I found myself longing to see JT again, his smile, his personality, his joy, the sparkle in his eye yet knowing I will again soon just brought immense peace.
God is good, we are blessed. We are uplifted and surrounded by prayers and we are in the arms of God our Father.
From GREAT! to Horrible, to we've got this!
Yesterday evening JT had 3 visitors! My best friend from our summer swim team brought me dinner and stayed to hang out a while. She loves my kids so incredibly and they love her back. JT looked at her and told her he loved her and they had a chat. It was so much of what we both needed.
After that, his beloved teachers stopped over! They came bearing gifts galore too! If you know JT you know he is a words of affirmation guy AND a gift giver! When his teacher gave him a gift to open he lite up like a Christmas tree. It was the first time since before surgery we saw his big wonderful smile! They gave him a book (Thidwick the big hearted Moose because JT is so big hearted) and a moose light up stuffy (he slept with it all night!) and a book they made. This book is a compilation of letters and stories from his classmates. Many of them had green drawings because his friends know his favorite color is green. Last night when the pain was beginning to set in I started reading some of them. Those stories and letters brought him such incredible joy. They brought me so much joy too. He love to hear from his friends in such a special and unique way. Oh, and I cannot forget - they also brought me a goodie bag of chocolate! I mean, how can you NOT love these people!
After they left things started to go downhill a bit. I read the book to JT while the pain was increasing and we were waiting on the nurse to talk to the doctors about medications.
The night didn't get better for a very long time. It was a rough night but it was totally different kind of rough than from the night before. Last night, for some reason, JT woke in pain. His muscles were spasming like they did yesterday morning. It was like the epidural stopped working, they even checked to make sure it was still in place - it was. It was the oddest thing.
The night doctor came in, a tall NBA looking Russian man. He was so kind and gentle and patient with JT. I am thankful for the nurses who stay to chat and who listen to me. I have even had a few doctors respond that I am not "just mom" I "AM MOM and mom knows best." It's sweet to hear. Anyway, I say this because I told our nurse that I think they scared him awake and that was part of the problem, I think the startle of being woken two nights ago attributed much to his vomit. Last night the nurse, very gently woke JT from a dead sleep at 11pm for some medication, some very needed medication and he flipped out. He was screaming much like he did that morning. We gave him all the meds we could and finally got him to calm down.
Oh, did I mention there was something wrong with is catheter?!? Yeah, it was blocked and the poor kid hadn't emptied his bladder since surgery! The nurse fixed that too and man did that kid have to go! Poor guy!
So here we are, 11pm with a screaming child, got him calm, got his catheter to work and the doctor and nurses worked for the best of JT. They decided to clump the rest of his medications together so they didn't have to come in 3 more times that night, just once at 4am. I also said they should wake me and let me give the meds so he isn't so scared that a stranger woke him and tried to put food in his mouth. At 4am, the nurse woke me from a dead sleep, I too startled much like JT does. I got up, he took his meds and quickly went back to sleep! IT WORKED! All the talking and listening and trying things a little differently worked. YAY!
At 5am Jt woke again in pain. Screaming his hip hurt and it felt like a broke a bone. This is the most interesting comment to me, he has no idea the doctor did in fact break his bones. We told him he was having a procedure where she was going to put his hips where they should be, but we never once told him they were going to break his legs. After about 2 minutes of him getting worked up and being unable to calm him down I called for the morphine. He hadn't had it since midnight so I felt okay about it. I am not a fan of drugs and medications and specifically opioids. Heck, we hardly use Tylenol and Motrin in our house. But I also know and firmly believe your body needs rest to heal! If your body is expending all of its energy to stop the pain it has no energy left to heal. Thankfully, after telling me he wasn't tired and asking for TV (I said no, its too early) he is back asleep, resting.
I know it sounds odd to many, but as sit here watching my baby boy sleep I can see the angels around him. Comforting and healing, moving from head to toe and back again. Justin is in good hands here and I am so thankful. The doctors and nurses have been wonderful, but more than in their hands, he is in Gods hands. There is no other place I would rather he be than in the hands of the God most high!
Today's prayer request - PAIN MANAGEMENT!
His orthopedist will be here today so we will see her and chat and find out what's next and perhaps what to expect.
I made the comment the other day that this surgery is like being in the NICU all over again. What do I mean? In the NICU doctors tell you pretty much nothing! The NICU is at best, the scariest rollercoaster you have ever been on and in the pitch black too. On one end, doctors don't want to scare you. On the other end, they don't want to give you too much hope or false hope. In the middle is you, waving in the wind with no idea what might happen next or the ups and downs that are ahead.
Here we are riding a scary ride, in the dark with no idea of what might happen or what could be next or anything like that. I am hopeful that today we will get a little more light shone on the rode ahead of us. We knew JT would be in pain, that's not a surprise. How much pain is a surprise.
**as I sit here typing this he started crying again and whimpering in pain.
I am going to sign off - thanks for the prayers - it's going to be a really hard and painful day for JT. Pray that he can manage the discomfort and learn the difference between pain and discomfort.
Thanks!!
After that, his beloved teachers stopped over! They came bearing gifts galore too! If you know JT you know he is a words of affirmation guy AND a gift giver! When his teacher gave him a gift to open he lite up like a Christmas tree. It was the first time since before surgery we saw his big wonderful smile! They gave him a book (Thidwick the big hearted Moose because JT is so big hearted) and a moose light up stuffy (he slept with it all night!) and a book they made. This book is a compilation of letters and stories from his classmates. Many of them had green drawings because his friends know his favorite color is green. Last night when the pain was beginning to set in I started reading some of them. Those stories and letters brought him such incredible joy. They brought me so much joy too. He love to hear from his friends in such a special and unique way. Oh, and I cannot forget - they also brought me a goodie bag of chocolate! I mean, how can you NOT love these people!
After they left things started to go downhill a bit. I read the book to JT while the pain was increasing and we were waiting on the nurse to talk to the doctors about medications.
The night didn't get better for a very long time. It was a rough night but it was totally different kind of rough than from the night before. Last night, for some reason, JT woke in pain. His muscles were spasming like they did yesterday morning. It was like the epidural stopped working, they even checked to make sure it was still in place - it was. It was the oddest thing.
The night doctor came in, a tall NBA looking Russian man. He was so kind and gentle and patient with JT. I am thankful for the nurses who stay to chat and who listen to me. I have even had a few doctors respond that I am not "just mom" I "AM MOM and mom knows best." It's sweet to hear. Anyway, I say this because I told our nurse that I think they scared him awake and that was part of the problem, I think the startle of being woken two nights ago attributed much to his vomit. Last night the nurse, very gently woke JT from a dead sleep at 11pm for some medication, some very needed medication and he flipped out. He was screaming much like he did that morning. We gave him all the meds we could and finally got him to calm down.
Oh, did I mention there was something wrong with is catheter?!? Yeah, it was blocked and the poor kid hadn't emptied his bladder since surgery! The nurse fixed that too and man did that kid have to go! Poor guy!
So here we are, 11pm with a screaming child, got him calm, got his catheter to work and the doctor and nurses worked for the best of JT. They decided to clump the rest of his medications together so they didn't have to come in 3 more times that night, just once at 4am. I also said they should wake me and let me give the meds so he isn't so scared that a stranger woke him and tried to put food in his mouth. At 4am, the nurse woke me from a dead sleep, I too startled much like JT does. I got up, he took his meds and quickly went back to sleep! IT WORKED! All the talking and listening and trying things a little differently worked. YAY!
At 5am Jt woke again in pain. Screaming his hip hurt and it felt like a broke a bone. This is the most interesting comment to me, he has no idea the doctor did in fact break his bones. We told him he was having a procedure where she was going to put his hips where they should be, but we never once told him they were going to break his legs. After about 2 minutes of him getting worked up and being unable to calm him down I called for the morphine. He hadn't had it since midnight so I felt okay about it. I am not a fan of drugs and medications and specifically opioids. Heck, we hardly use Tylenol and Motrin in our house. But I also know and firmly believe your body needs rest to heal! If your body is expending all of its energy to stop the pain it has no energy left to heal. Thankfully, after telling me he wasn't tired and asking for TV (I said no, its too early) he is back asleep, resting.
I know it sounds odd to many, but as sit here watching my baby boy sleep I can see the angels around him. Comforting and healing, moving from head to toe and back again. Justin is in good hands here and I am so thankful. The doctors and nurses have been wonderful, but more than in their hands, he is in Gods hands. There is no other place I would rather he be than in the hands of the God most high!
Today's prayer request - PAIN MANAGEMENT!
His orthopedist will be here today so we will see her and chat and find out what's next and perhaps what to expect.
I made the comment the other day that this surgery is like being in the NICU all over again. What do I mean? In the NICU doctors tell you pretty much nothing! The NICU is at best, the scariest rollercoaster you have ever been on and in the pitch black too. On one end, doctors don't want to scare you. On the other end, they don't want to give you too much hope or false hope. In the middle is you, waving in the wind with no idea what might happen next or the ups and downs that are ahead.
Here we are riding a scary ride, in the dark with no idea of what might happen or what could be next or anything like that. I am hopeful that today we will get a little more light shone on the rode ahead of us. We knew JT would be in pain, that's not a surprise. How much pain is a surprise.
**as I sit here typing this he started crying again and whimpering in pain.
I am going to sign off - thanks for the prayers - it's going to be a really hard and painful day for JT. Pray that he can manage the discomfort and learn the difference between pain and discomfort.
Thanks!!
Tuesday, February 4, 2020
Things are never how they are suppose to be
I often find myself shocked at how my plans don't come to be. I cannot count how many times I have made plans and God has laughed at me as a Father laughs at his child. Not in a mean way, but in a sweet loving way of "those are great plans but mine are better" I see the same kinds of things in my boys. I LOVE hearing their BIG plans for the day. I giggle in delight as they go out to build a functional ironman suit or Thors hammer out of wood. Isn't if funny that I can see the wonder and delight but also the reality of it all at the same time. It's easy for me to tell them to let go, go with the flow, it's okay for plans to not go exactly as you want them to or as you think they will. But when it comes to me, well, I am shocked! I had it all planned out in my head, I was prepared! I knew what might happen, I knew what would happen, yet still, here I sit shocked that none of my "plans" or better expectations have been met.
I was dreading this surgery. I had hopes that he would sleep all day Monday. I planned for the pain to be more on Tuesday but still, okay. NOT THE CASE! As you know, we had a rough night. I was in no way expecting him to throw up from 1pm - 3am. Today as the epidural gets turned off and he can, for the first time feel the pain I find myself expecting it but still surprised by it. Tears are flowing down his face as he cries "it hurts, I'm not kidding." His feet are swelling, his eyes are swelling too. The fluids are going in but not really coming out so well.
- LONG BREAK -
Ok, I started this about 3 hours ago. I had to go Justin as he started having muscle spasms which caused him immense pain. Jake and I held his hands as he screamed "It really hurts! Why won't anyone help me." Gut wrenching is one way of putting it. In an attempt to help calm him and bring him peace I started reading prayers people have posted on FB to him. It's amazing how strong I can be until those moments. I just want to sob when I read them. Sob tears of gratitude knowing that God IS good, he IS with us he DOES LOVE us and Justin more than we could ever fathom. The prayers "didn't help" in Justin's words, but I know they did. He had to calm down to breathe and hear the words, that alone helped.
The nurse today has been a gift! Joelle. Thank God for her and her heart and her work for her patients. She contacted the doctors, got JT back on the epidural, and pushed all the pain meds and muscle relaxers and nerve medications she could.
Funny story - every night we try to share "God sightings" at the dinner table. It can be anything from a beautiful sunrise to a friend helping someone, a kind word... Here is my God sighting today. JT's ortho is at another office on Tuesdays but she has other Orthopedists checking in. If the new doctor (resident) hadn't gotten lost in the hospital on his way to remove JT's epidural he would have taken it out hours ago and they wouldn't have been able to restart it. Since starting the epidural about 40 minutes ago JT has stopped screaming and is much more comfortable. That's my God sighting - the doctor got lost allowing JT to keep the epidural that brings his little body pain relief!
For now we are continuing to pray for pain relief. Praise the Lord, breakfast stayed down and he is looking forward to lunch. Now we pray for pain. I know the pain all too well, I remember the pain all too well. It is one I would never ever want to relive let alone have my child go through.
I was dreading this surgery. I had hopes that he would sleep all day Monday. I planned for the pain to be more on Tuesday but still, okay. NOT THE CASE! As you know, we had a rough night. I was in no way expecting him to throw up from 1pm - 3am. Today as the epidural gets turned off and he can, for the first time feel the pain I find myself expecting it but still surprised by it. Tears are flowing down his face as he cries "it hurts, I'm not kidding." His feet are swelling, his eyes are swelling too. The fluids are going in but not really coming out so well.
- LONG BREAK -
Ok, I started this about 3 hours ago. I had to go Justin as he started having muscle spasms which caused him immense pain. Jake and I held his hands as he screamed "It really hurts! Why won't anyone help me." Gut wrenching is one way of putting it. In an attempt to help calm him and bring him peace I started reading prayers people have posted on FB to him. It's amazing how strong I can be until those moments. I just want to sob when I read them. Sob tears of gratitude knowing that God IS good, he IS with us he DOES LOVE us and Justin more than we could ever fathom. The prayers "didn't help" in Justin's words, but I know they did. He had to calm down to breathe and hear the words, that alone helped.
The nurse today has been a gift! Joelle. Thank God for her and her heart and her work for her patients. She contacted the doctors, got JT back on the epidural, and pushed all the pain meds and muscle relaxers and nerve medications she could.
Funny story - every night we try to share "God sightings" at the dinner table. It can be anything from a beautiful sunrise to a friend helping someone, a kind word... Here is my God sighting today. JT's ortho is at another office on Tuesdays but she has other Orthopedists checking in. If the new doctor (resident) hadn't gotten lost in the hospital on his way to remove JT's epidural he would have taken it out hours ago and they wouldn't have been able to restart it. Since starting the epidural about 40 minutes ago JT has stopped screaming and is much more comfortable. That's my God sighting - the doctor got lost allowing JT to keep the epidural that brings his little body pain relief!
For now we are continuing to pray for pain relief. Praise the Lord, breakfast stayed down and he is looking forward to lunch. Now we pray for pain. I know the pain all too well, I remember the pain all too well. It is one I would never ever want to relive let alone have my child go through.
Longest night ever
Well that didn’t go as I’d hoped!
I thought and prayed that last night he would be so tired and on so many pain meds that he’s sleep the night away... he tried but oh my word! Hospitals do not make it easy to recover.
Every time he’d fall asleep I’d try to do the same. Between pain and vomit and alarms waking him up when he was asleep we got about 4 or 5 hours of sleep. Poor Justin was STILL talking about dinner at 1:30am. After I buzzed the nurse 6 times for alarms going off I finally asked if we should expect anymore, she said no..... then 1.5hrs later the stinking alarm went off 2 more times. This time the nurse waited in the room to stop it from going off.
I know they are doing their jobs but what they don’t know or fully understand is that JT startles! Even a soft sound makes him jump. Every time an alarm went off his body would jump awake and every time he’d end up throwing up. I don’t think it was nausea as much as it was his body responding to an empty stomach, plus pain, plus the scare and then the meds upsetting his stomach.
Today is a new day! We are both tired and the pain is starting to set in. He’s confused and very concerned that his hip hurts. In his mind this was suppose to “fix” his hip so the pain is confusing.
Today the epidural will come out and the boy will GET TO EAT!! He woke at the last alarm at 3:45 for the day... I’ve heard of nothing else but WHEN are you going to order me food.
Prayers for today:
Pray for pain management
Pray we get some incredible nurses
Pray for no more vomit! (I think we used every puke bag on the floor last night)
Pray for solid naps and supernatural healing
Pray that today is awesome so he can be discharged on Wed. Given how last night went, I’m not sure that’s going to happen.
Praise God that my mighty miracle is in good spirits even in pain.
I thought and prayed that last night he would be so tired and on so many pain meds that he’s sleep the night away... he tried but oh my word! Hospitals do not make it easy to recover.
Every time he’d fall asleep I’d try to do the same. Between pain and vomit and alarms waking him up when he was asleep we got about 4 or 5 hours of sleep. Poor Justin was STILL talking about dinner at 1:30am. After I buzzed the nurse 6 times for alarms going off I finally asked if we should expect anymore, she said no..... then 1.5hrs later the stinking alarm went off 2 more times. This time the nurse waited in the room to stop it from going off.
I know they are doing their jobs but what they don’t know or fully understand is that JT startles! Even a soft sound makes him jump. Every time an alarm went off his body would jump awake and every time he’d end up throwing up. I don’t think it was nausea as much as it was his body responding to an empty stomach, plus pain, plus the scare and then the meds upsetting his stomach.
Today is a new day! We are both tired and the pain is starting to set in. He’s confused and very concerned that his hip hurts. In his mind this was suppose to “fix” his hip so the pain is confusing.
Today the epidural will come out and the boy will GET TO EAT!! He woke at the last alarm at 3:45 for the day... I’ve heard of nothing else but WHEN are you going to order me food.
Prayers for today:
Pray for pain management
Pray we get some incredible nurses
Pray for no more vomit! (I think we used every puke bag on the floor last night)
Pray for solid naps and supernatural healing
Pray that today is awesome so he can be discharged on Wed. Given how last night went, I’m not sure that’s going to happen.
Praise God that my mighty miracle is in good spirits even in pain.
Monday, February 3, 2020
Prayers please
Please pray for JT.
He started throwing up And can’t seem to keep any pain meds down.
Thank you!
Praise the epidural is doing it’s job but the added pain meds are needed and aren’t being given by IV
He started throwing up And can’t seem to keep any pain meds down.
Thank you!
Praise the epidural is doing it’s job but the added pain meds are needed and aren’t being given by IV
In recovery
It’s amazing how God moves. I dreaded today. My fears and anxiety over today came in waves. Dreading the long hours of waiting. But it wasn’t bad at all!
Jake arrived just before they took JT back so they got a little time together. That was a beautiful blessing! Jake then helped the hours pass quickly. We have been through a lot in our 14 years of marriage. We have learned how to carry each other, hold each other up and mostly cherish each moment and laugh as often as possible,
Instead of sitting feeling each painful minute tick by we went for a walk, played in the gift shop and had some date like conversation. OH! That’s another thing we’ve learned, anytime without kids is an opportunity for a date. We take advantage of the time, love and gifts God has blessed us with.
But enough about us, you want to hear about JT!
His surgery lasted just shy of 5 hours. The nurse texted us 1 hour in saying all was going well, then again at 4.5 hours saying it was over and they were closing him up.
Both Dr Magnabosco(ortho) and the anesthesiologist came to tell us it all went very well.
He woke for a bit, gave me a beautiful Justin smile and is now back asleep.
Justin and I will remain in the PICU tonight due to the epidural then be transferred to another floor sometime tomorrow. Jake is heading out to pick up the other goons from school and do their nightly routine.
Prayers for tonight:
Pray JT has a great rest! Pray his body takes this time to heal wonderfully.
Pray for Jake and he and the boys have homework and nightly routines to get through. Pray for my 3 littles who are going through a “I can’t sleep without mommy’s hugs and kisses and snuggles” phase. One I love, but one that makes this stay just a little harder.
Thank God for each other. Praise him for all those lifting our family up in prayer. Praise him for today going so incredibly well and for the peace Jake and I have felt all day today. Praise him for those bringing my men at home meals.
God is good in all things. Sometimes it’s hard to see or feel through the fear and pain, but if you stop and seek, you will find his goodness!
Many blessings!
I’ll check in again tomorrow
Jake arrived just before they took JT back so they got a little time together. That was a beautiful blessing! Jake then helped the hours pass quickly. We have been through a lot in our 14 years of marriage. We have learned how to carry each other, hold each other up and mostly cherish each moment and laugh as often as possible,
Instead of sitting feeling each painful minute tick by we went for a walk, played in the gift shop and had some date like conversation. OH! That’s another thing we’ve learned, anytime without kids is an opportunity for a date. We take advantage of the time, love and gifts God has blessed us with.
But enough about us, you want to hear about JT!
His surgery lasted just shy of 5 hours. The nurse texted us 1 hour in saying all was going well, then again at 4.5 hours saying it was over and they were closing him up.
Both Dr Magnabosco(ortho) and the anesthesiologist came to tell us it all went very well.
He woke for a bit, gave me a beautiful Justin smile and is now back asleep.
Justin and I will remain in the PICU tonight due to the epidural then be transferred to another floor sometime tomorrow. Jake is heading out to pick up the other goons from school and do their nightly routine.
Prayers for tonight:
Pray JT has a great rest! Pray his body takes this time to heal wonderfully.
Pray for Jake and he and the boys have homework and nightly routines to get through. Pray for my 3 littles who are going through a “I can’t sleep without mommy’s hugs and kisses and snuggles” phase. One I love, but one that makes this stay just a little harder.
Thank God for each other. Praise him for all those lifting our family up in prayer. Praise him for today going so incredibly well and for the peace Jake and I have felt all day today. Praise him for those bringing my men at home meals.
God is good in all things. Sometimes it’s hard to see or feel through the fear and pain, but if you stop and seek, you will find his goodness!
Many blessings!
I’ll check in again tomorrow
Here we go!
Well, we are here, hungry but here.
I’ve tried 3 times to write this so it’s going to more bullet points than a good read.
JT is having more anxiety about this procedure than I’ve ever seen. It’s heart breaking.
I had him physically throw a mask away so he didn’t have to worry about it. That’s all he’s talked about for 2 days now.
We’ve prayed for him to be strong and courageous. We’ve prayed for him to remember that God says “do not be afraid for I am with you.”
He prayed for himself “God help me to be brave and courageous, I can do this!”
I’ve read texts and messages from you all to him too!
He knows he is covered 100x over in prayers, that is bringing him some peace. - THANK YOU!
Right now child life and nurses are doing all they can to alleviate his stress and anxiety and teach him about an IV.
one of his best beautiful buddies from our hospital stay in 2016 stopped by on her way upstairs to see him! That got him SUPER excited! She’s more of a blessing than she knows!
Jake has dropped the boys at school and is on his way. Pray he gets here to see JT before he goes back. I’m hopeful he will!
I’ve tried 3 times to write this so it’s going to more bullet points than a good read.
JT is having more anxiety about this procedure than I’ve ever seen. It’s heart breaking.
I had him physically throw a mask away so he didn’t have to worry about it. That’s all he’s talked about for 2 days now.
We’ve prayed for him to be strong and courageous. We’ve prayed for him to remember that God says “do not be afraid for I am with you.”
He prayed for himself “God help me to be brave and courageous, I can do this!”
I’ve read texts and messages from you all to him too!
He knows he is covered 100x over in prayers, that is bringing him some peace. - THANK YOU!
Right now child life and nurses are doing all they can to alleviate his stress and anxiety and teach him about an IV.
one of his best beautiful buddies from our hospital stay in 2016 stopped by on her way upstairs to see him! That got him SUPER excited! She’s more of a blessing than she knows!
Jake has dropped the boys at school and is on his way. Pray he gets here to see JT before he goes back. I’m hopeful he will!
Thank you all again for your prayers.
I want to cry but at the same time, I’m okay.
Who knows what the long day will bring, but now is time to be strong for my mighty miracle!
Sunday, February 2, 2020
Almost ready
Today has been a wonderful day! Church, family walk, boys are having a dart gun war, football food is cooking and we are getting ready for the Super Bowl!
JT's particular packing list has been adhered too (hahahaa, if you know him, you know how particular he can be, and relentless too) We have his stuffy, his night light, his karaoke machine (not kidding) and a phone for music and audio books! I THINK we are ready, as ready as we can be!
Tomorrow JT and I will get up around 5:30am to get ready to head to the hospital. We check in at 6:30am and surgery is at 8:30. The surgery will be about 6 hours long.
It's going to be a horribly long wait, but I am thankful Jake will join me after taking the other 4 to school.
Monday will be a very hectic day, After surgery JT will remain in the PICU since he will have a spinal block in through the night. Some time Tuesday we hope to be transferred to another floor/wing of the hospital to finish his recovery.
We will try our very best to update everyone as soon as we can but please know how many people have very lovingly asked to be updated. Our first priority will be our family, then we will do our best to reach out to others. If you are the chosen one, we may ask that you pass on the news to others. Thank you for helping us manage the outpouring of love and kindness.
Many blessings
Melissa and Jake
JT's particular packing list has been adhered too (hahahaa, if you know him, you know how particular he can be, and relentless too) We have his stuffy, his night light, his karaoke machine (not kidding) and a phone for music and audio books! I THINK we are ready, as ready as we can be!
Tomorrow JT and I will get up around 5:30am to get ready to head to the hospital. We check in at 6:30am and surgery is at 8:30. The surgery will be about 6 hours long.
It's going to be a horribly long wait, but I am thankful Jake will join me after taking the other 4 to school.
Monday will be a very hectic day, After surgery JT will remain in the PICU since he will have a spinal block in through the night. Some time Tuesday we hope to be transferred to another floor/wing of the hospital to finish his recovery.
We will try our very best to update everyone as soon as we can but please know how many people have very lovingly asked to be updated. Our first priority will be our family, then we will do our best to reach out to others. If you are the chosen one, we may ask that you pass on the news to others. Thank you for helping us manage the outpouring of love and kindness.
Many blessings
Melissa and Jake
Saturday, February 1, 2020
The calm before the storm
I started writing this entry at about 1:30pm today. It is now 7:30pm and the boys still aren't in bed. I always wondered why I stopped writing, now I think I remember... life! My big, wonderful, crazy life just stops me in my tracks. So, here I am, hours later trying to get this finished and posted.
Today is a good day! The sun is shining the boys are happily playing outside, I am getting all the laundry done, groceries are bought and put away. I am as prepared as I feel I can be, in this moment anyway.
Monday is going to be the longest procedure/surgery Justin has ever had. Jake and I are taking turns being okay and not being okay. Talking each other off the cliff and just holding each other. God has truly blessed us with a remarkable marriage, I am so thankful for that.
Tomorrow is church and the Super Bowl. Tomorrow we will get outside, go for a walk, bike ride, whatever we can do just just enjoy the day.
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