Today Nathan's bilirubin is down again. He is looking a lot better. He has started eating a half of an ounce to an ounce per feeding, usually about four or five times a day. We even had some play time last night, and lots of very cute smiles! Isaac has been serenading me with Itsy Bitsy Spider, Twinkle Twinkle Little Star and the ABC Song when I go home, it is very cute. He loves to say, "I Got it", "Yes, I do.", "Oh my Gosh", "I want to push the button", and "I can fix it!" He loves playing in the park, reading, and playing with his vroom vrooms. My mom has transformed him into another St. Louis Cardinals fan. My boys melt my heart.
Today, Nathan's oxygen keeps dropping low. For the first time we actually have to keep him on a continuous flow of oxygen instead of the blow by. He is not tolerating the amount of fluids they have to give him. They took a chest X-Ray this morning, and the amount of fluid in his lungs has increased. They are going to give him an extra dose of diuretic this evening. They are also going to ween him off the Fentanyl tomorrow, which is his pain medication. I just keep holding him in my arms and praying over him for healing, for his little body to work the way it should.
I had an ultrasound of my gallbladder yesterday. I do have gallstones, and it looks like I will have to have my gallbladder removed. I have a consult with surgery on Friday. Surgery could be next week. I don't want to do it if Nathan is as unstable as he is now. I will wait and see what the Dr. says on Friday.
Its seems like for every step forward, there is one step back. Today, I can't help but feel worried. Everything is still so delicate. I am tense, I feel like at any point in time things could get a lot more serious. I am looking forward to days when things will be much more simple.
. . . I can do all things through Christ who strengthens me . . . . another step forward.
Our Journey of Nathan's Transplant
We're Still Rejoicing!
Wednesday, August 31, 2011
Monday, August 29, 2011
Hope
We are still having lots of ups and downs. The doctors may call this stable, but it doesn't seem very stable to me. His bilirubin went up and now it is down slightly again. He is still having issue with fluid that effects his weight, swelling and breathing. We still have him on the "blow by" oxygen. Because the chest Xray showed fluid in his lungs, Nathan had an echocardiogram. It showed there is a thickening or possibly edema of the ventricle walls. The thickening could be because of the fluid, or the fluid could be a result of his heart not working quite properly. This is a change from the last echocardiogram he had done.
On a positive note, my mom had prayed last night that he would eat. Later that night he breastfed for the first time in weeks! It was such a sweet moment. I was so thankful, and my heart was filled with joy. The Lord continues to answer prayers. This morning he ate another 2 oz. from a bottle.
I am trying to have hope. Our hope is in the lord and not in medical statistics. I get very anxious when the doctors tell me the statistics. It's so hard to hear that the mortality rate for VOD is 40% - 50%. So far it is good things have not gotten worse, in fact they are slightly better. They did catch it early.
Be strong and take heart, all you who hope in the LORD.
Psalm 31:24
We wait in hope for the LORD; he is our help and our shield.
Psalm 33:20
Continue to pray for healing for his liver function, heart and respiratory function, and that he would continue to eat! We are so thankful for everyone's prayers and support in this journey. Through you God continues to encourage us and give us hope when we are discouraged.
On a positive note, my mom had prayed last night that he would eat. Later that night he breastfed for the first time in weeks! It was such a sweet moment. I was so thankful, and my heart was filled with joy. The Lord continues to answer prayers. This morning he ate another 2 oz. from a bottle.
I am trying to have hope. Our hope is in the lord and not in medical statistics. I get very anxious when the doctors tell me the statistics. It's so hard to hear that the mortality rate for VOD is 40% - 50%. So far it is good things have not gotten worse, in fact they are slightly better. They did catch it early.
Be strong and take heart, all you who hope in the LORD.
Psalm 31:24
We wait in hope for the LORD; he is our help and our shield.
Psalm 33:20
Continue to pray for healing for his liver function, heart and respiratory function, and that he would continue to eat! We are so thankful for everyone's prayers and support in this journey. Through you God continues to encourage us and give us hope when we are discouraged.
Saturday, August 27, 2011
Milestone: Engraftment Accomplished
We're still rejoicing!!!
Yesterday we had a celebration at the hospital for Nathans engraftment. He had three consecutive days over 500, so his transplant is considered engrafted! He officially engrafted Monday night. It was a huge answer to prayers, and we are very thankful.
Occupational therapy continues to work with Nathan to try to get him to eat. Earlier in the week, he had started to eat small amounts. Yesterday he regressed and had a half an ounce for the whole day. He wouldn't eat again today, and will be put on IV nutrition tonight.
As far as Veno-Occlusive Disorder, the condition is unrelated to the transplant engraftment. It is caused by the chemotherapy, and is causing Nathan's liver to not function properly. Thank the Lord, his bilirubin level had gone down for two days straight. The swelling in his belly has gone down, and so had his weight. Today the bilirubin and weight is up a little. His oxygen level is low, and they place the oxygen mask by his face for a "blow by" to increase his level. He had a chest X-ray last night, and he has a little fluid in his lungs. They are going to start him on an antibiotic again. He is extremely fussy today, and its hard to tell why. He could be in pain, it could be withdrawals from the pain medicine, or it could be nauseau. He is getting a med to help with the withdrawal from the fentanyl.
We had a good day yesterday, although it was a little unsettling last night. With Nathan's situation, you have to expect things to be very volatile. Things can change very quickly. We will continue to pray for God to answer our prayers and continue to heal our son.
We are thankful for everyone's prayers.
Yesterday we had a celebration at the hospital for Nathans engraftment. He had three consecutive days over 500, so his transplant is considered engrafted! He officially engrafted Monday night. It was a huge answer to prayers, and we are very thankful.
Occupational therapy continues to work with Nathan to try to get him to eat. Earlier in the week, he had started to eat small amounts. Yesterday he regressed and had a half an ounce for the whole day. He wouldn't eat again today, and will be put on IV nutrition tonight.
As far as Veno-Occlusive Disorder, the condition is unrelated to the transplant engraftment. It is caused by the chemotherapy, and is causing Nathan's liver to not function properly. Thank the Lord, his bilirubin level had gone down for two days straight. The swelling in his belly has gone down, and so had his weight. Today the bilirubin and weight is up a little. His oxygen level is low, and they place the oxygen mask by his face for a "blow by" to increase his level. He had a chest X-ray last night, and he has a little fluid in his lungs. They are going to start him on an antibiotic again. He is extremely fussy today, and its hard to tell why. He could be in pain, it could be withdrawals from the pain medicine, or it could be nauseau. He is getting a med to help with the withdrawal from the fentanyl.
We had a good day yesterday, although it was a little unsettling last night. With Nathan's situation, you have to expect things to be very volatile. Things can change very quickly. We will continue to pray for God to answer our prayers and continue to heal our son.
We are thankful for everyone's prayers.
Thursday, August 25, 2011
We are Rejoicing: Answered Prayers
Our God is faithful and we are rejoicing today.
Nathan's bilirubin has gone down to 7, and his ANC is 1329!!!! Tomorrow will be the third day over 500 and ENGRAFTMENT DAY! His weight has gone down (which is good), he is losing some of the fluid he was retaining. The swelling in his belly has also gone down, and is less painful. They will decrease his pain medication for the third time.
We are so thankful for everyone's prayers. God has answered our prayers.
He is receiving speech therapy to learn how to eat again. It is a very slow process. He ate 3 ounces over three feedings yesterday. They have delayed putting Nathan back on the IV nutrition for one mare day. Please pray he starts eating again. The IV nutrition is hard on the liver, and also makes him not want to eat.
This is the day the Lord has made, we will rejoice and be glad in it.
Psalm 118:24
Nathan's bilirubin has gone down to 7, and his ANC is 1329!!!! Tomorrow will be the third day over 500 and ENGRAFTMENT DAY! His weight has gone down (which is good), he is losing some of the fluid he was retaining. The swelling in his belly has also gone down, and is less painful. They will decrease his pain medication for the third time.
We are so thankful for everyone's prayers. God has answered our prayers.
He is receiving speech therapy to learn how to eat again. It is a very slow process. He ate 3 ounces over three feedings yesterday. They have delayed putting Nathan back on the IV nutrition for one mare day. Please pray he starts eating again. The IV nutrition is hard on the liver, and also makes him not want to eat.
This is the day the Lord has made, we will rejoice and be glad in it.
Psalm 118:24
Wednesday, August 24, 2011
Strength
Its been stressful the last three days. This is a challenging time, it is hard to not be fearful. Our son is in Gods hands. It is days like today that I need the strength of the Lord, I do not have the strength on my own.
I can do all things through Christ who strengthens me.
Philippians 4:13
The situation is serious, and very delicate. Nathan's liver is not functioning properly. He has a condition called veno-occlusive disorder. It is a side effect of the chemotherapy. This condition is not very well understood, and there are not a lot of treatments. They have made some corrections to medicines to be less stressful on his liver, and eliminated the IV nutrition and other medicines that are hard on his liver. So far there is no damage to the liver tissue, it was caught at the early stages.
Even on days like this when it is really hard, I am trying to be thankful, and praising God through the storm. God has blessed our family with an incredibly compassionate, loving staff to help us get through this, and to encourage us. I am so thankful for that. I am proud of both of my boys and how strong they have been to go through this. I am looking forward to the joyful times ahead.
I can do all things through Christ who strengthens me.
Philippians 4:13
The situation is serious, and very delicate. Nathan's liver is not functioning properly. He has a condition called veno-occlusive disorder. It is a side effect of the chemotherapy. This condition is not very well understood, and there are not a lot of treatments. They have made some corrections to medicines to be less stressful on his liver, and eliminated the IV nutrition and other medicines that are hard on his liver. So far there is no damage to the liver tissue, it was caught at the early stages.
They are starting a trial drug today called Defribrotide. If this doesn't work, there's not a lot of other options. This condition can be life threatening. The bilirubin count is an indicator of the health of his liver function, and it has been increasing which isn't good. The trial medication will be given every six hours for 21 days. After the medicine is given, it is just a waiting game to see if Nathan's body will heal itself. We could possibly see some improvement within 72 hours to one week.
He had his first decreases in his bilirubin by a very small amount this morning, praise God! Any decrease is a very good thing. The fluid in his belly has also gone down, and he ate his first ounce of milk this afternoon. This is all encouraging. They will have to put him back on the IV nutrition tomorrow since he still is not eating regularly.
As far as the transplant goes, his counts are going up. His ANC was 504 Monday, but they were down to 441 yesterday (which is normal), today his ANC is 851! After three consecutive days at 500 the transplant is considered engrafted. That could be Friday!
Please pray for Nathan:
1. His liver to start functioning normally
2. For the condition to not progress
3. For his bilirubin count to go down
4. To start eating.
Tuesday, August 23, 2011
A Great Tapestry
It was Thursday when I first noticed blood in Nathans urine. At first the doctor thought it could be his urine was just concentrated, until the next day it got darker. The urine analysis tested positive for blood. Then his bilirubin level started to increase. An ultrasound of his kidneys were normal.
It was a great weekend with my little boy full of joy and laughter, and my great friend and her two boys. It was a blessing, thanks to my husband for taking care of Nathan at the hospital.
When I got to the hospital on Sunday after not seeing him for almost three days, I was surprised to see how much worse he was. He belly was swollen and distended. His O2 count was low. He kept grunting, and his belly was very tender. On my way back to the hospital called the doctor called saying they suspected Nathan has veno-occlusive disease (VOD), a very serious disorder in transplant patients that affects the liver. Damage to the liver is irreversible, and if left untreated can be fatal. My heart sunk. The chemotherapy is very hard on the liver and kidneys, and I had been worried. I was so touched that the doctor was in the atrium when I got there to talk to me. We are blessed with amazing doctors filled with compassion.
On Monday he had an ultrasound of his liver and a chest x-ray. The ultrasound was normal. His liver tissue is healthy, it is just not functioning properly. His bilirubin level keeps increasing. The X-ray showed he has fluid in his lungs, which is what is decreasing his oxygen count. The doctors still think he has VOD.
In all of this, God has put people in my path to show me a glimpse of his greater purpose. The staff here not only care about Nathan, but about me too, and made me go to the doctor. I found out that I have possible gall stones and a UT infection. The doctor there made room for to see me yesterday. She offered to drive me back to the hospital and took me to get something to eat. On the way back, she was playing Christian music. I asked her if she was a Christian, and she was indeed. She told me how life is like looking at a messy piece of artwork with expanse of knots and loose threads. Its ugly without meaning, not pretty in the least. You can't see the whole picture. But on the other side it is a beautiful tapestry. The artist tied each piece together to create a beautiful master piece of art.
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
God used this amazing, loving woman to show me not to be focused on this moment. God has a bigger plan and purpose. I admit I'm incredibly stressed, and scared. But God is still with us. I am looking forward to joy ahead (1 Peter 1:6). I am trying to not be anxious or fearful, and put my trust in the Lord. It's not that the Lord is not capable of healing Nathan. Our heavenly father is omnipotent, all powerful, there is nothing he can't do. We just do not know if it is the Lord's plan to heal Nathan, and that is what scares me. But the Lord wants us to pour out our hearts to him:
Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.
Psalm 62:8
My heart is crying out to God to heal my son, to protect Isaac, and to and to bring Shawn and I closer to him.
It was a great weekend with my little boy full of joy and laughter, and my great friend and her two boys. It was a blessing, thanks to my husband for taking care of Nathan at the hospital.
When I got to the hospital on Sunday after not seeing him for almost three days, I was surprised to see how much worse he was. He belly was swollen and distended. His O2 count was low. He kept grunting, and his belly was very tender. On my way back to the hospital called the doctor called saying they suspected Nathan has veno-occlusive disease (VOD), a very serious disorder in transplant patients that affects the liver. Damage to the liver is irreversible, and if left untreated can be fatal. My heart sunk. The chemotherapy is very hard on the liver and kidneys, and I had been worried. I was so touched that the doctor was in the atrium when I got there to talk to me. We are blessed with amazing doctors filled with compassion.
On Monday he had an ultrasound of his liver and a chest x-ray. The ultrasound was normal. His liver tissue is healthy, it is just not functioning properly. His bilirubin level keeps increasing. The X-ray showed he has fluid in his lungs, which is what is decreasing his oxygen count. The doctors still think he has VOD.
In all of this, God has put people in my path to show me a glimpse of his greater purpose. The staff here not only care about Nathan, but about me too, and made me go to the doctor. I found out that I have possible gall stones and a UT infection. The doctor there made room for to see me yesterday. She offered to drive me back to the hospital and took me to get something to eat. On the way back, she was playing Christian music. I asked her if she was a Christian, and she was indeed. She told me how life is like looking at a messy piece of artwork with expanse of knots and loose threads. Its ugly without meaning, not pretty in the least. You can't see the whole picture. But on the other side it is a beautiful tapestry. The artist tied each piece together to create a beautiful master piece of art.
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
God used this amazing, loving woman to show me not to be focused on this moment. God has a bigger plan and purpose. I admit I'm incredibly stressed, and scared. But God is still with us. I am looking forward to joy ahead (1 Peter 1:6). I am trying to not be anxious or fearful, and put my trust in the Lord. It's not that the Lord is not capable of healing Nathan. Our heavenly father is omnipotent, all powerful, there is nothing he can't do. We just do not know if it is the Lord's plan to heal Nathan, and that is what scares me. But the Lord wants us to pour out our hearts to him:
Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.
Psalm 62:8
My heart is crying out to God to heal my son, to protect Isaac, and to and to bring Shawn and I closer to him.
Thursday, August 18, 2011
200!!!!!
On Tuesday was a huge milestone with our first ANC of 16. The Absolute Neutrophil Count or ANC is the body's ability to fight things off. Another prayer was answered today. A sweet friend had been praying for Nathan to smile at me. He has not smiled since before chemo started. Tuesday night, the prayer was answered in a precious way. He kept scrunching up his nose and smiling. I have a great picture of the wonderful memory.
On Wednesday his ANC was 92. I noticed it looked like there was blood in his urine. The tests confirmed it, but they think it might be to his extremely low platelet count (7). He has been getting platelets twice a day, and blood every other day on top of all of his medications. The have been also having to give him diuretics 1-3 times a day because of the volume of fluids he receives. He usually has 5 IV lines going constantly, sometimes up to 9.
Although it is volatile, today was a huge milestone, his ANC was 230! Thank you Jesus! If his ANC stays consistently above 200, the sores in his mouth will start healing. We are so thankful for this huge milestone. God is good. After a lot of platelets, his urine is returning to a normal color. He still is not eating.
I went home to be with Isaac tonight and Shawn is staying at the hospital with Nathan. I started to not feel very well. This might mean that I cannot go back to the hospital for 3 days . . . That will be hard. I have not spent that much time away from Nathan since he's been born.
I am excited, some of our friends from Kansas City are coming up this weekend, another blessing!
On Wednesday his ANC was 92. I noticed it looked like there was blood in his urine. The tests confirmed it, but they think it might be to his extremely low platelet count (7). He has been getting platelets twice a day, and blood every other day on top of all of his medications. The have been also having to give him diuretics 1-3 times a day because of the volume of fluids he receives. He usually has 5 IV lines going constantly, sometimes up to 9.
Although it is volatile, today was a huge milestone, his ANC was 230! Thank you Jesus! If his ANC stays consistently above 200, the sores in his mouth will start healing. We are so thankful for this huge milestone. God is good. After a lot of platelets, his urine is returning to a normal color. He still is not eating.
I went home to be with Isaac tonight and Shawn is staying at the hospital with Nathan. I started to not feel very well. This might mean that I cannot go back to the hospital for 3 days . . . That will be hard. I have not spent that much time away from Nathan since he's been born.
I am excited, some of our friends from Kansas City are coming up this weekend, another blessing!
Tuesday, August 16, 2011
Held
Casa Gallardo restaurant held a fundraiser on Nathan's behalf Sunday from 10 a.m. to 9:30 p.m. It was overwhelming to see the amount of support. People we didn't even know were there to help. I thanked the management late in the evening. They said it was the best fundraiser they've ever have, and it was one of the busiest days they've ever had.
This is a true testimony once again to how good God is, and what amazing family and friends he's given us. There are so many people we will not even have the opportunity to thank. Thank you to all those that did selflessly supported us Sunday, and in so many other ways. God is working through you to help this journey be a little better.
Nathan is still not eating, and is throwing up. He started to lose his eyelashes. He sleeps often, but otherwise is content.
Nathan, from the moment he was born loves to be held. God is still showing me that just how my son longs for me to hold him in my arms, our heavenly father is holding us in his arms. I was listening to one of my favorite worship songs, "At the Cross" by Hillsong. One of the lines is "Your holy presence surrounding me, in every season, I know you love me . . .You go before me, you shield my way, Your hand upholds me, I know you love me."
I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10
This is one of the hardest things I have ever had to go through, but I do not walk alone. My lord, my savior upholds me and provides me the strength. What an amazing God to use someone as small and weak as Nathan, and someone as sinful as me for his plan and purpose.
I pray you will feel the Lord upholding you, and feel his mighty strength. He is always near. He gave the ultimate sacrifice so we would be eternally free. How great is our God, how great is his love.
This is a true testimony once again to how good God is, and what amazing family and friends he's given us. There are so many people we will not even have the opportunity to thank. Thank you to all those that did selflessly supported us Sunday, and in so many other ways. God is working through you to help this journey be a little better.
Nathan is still not eating, and is throwing up. He started to lose his eyelashes. He sleeps often, but otherwise is content.
Nathan, from the moment he was born loves to be held. God is still showing me that just how my son longs for me to hold him in my arms, our heavenly father is holding us in his arms. I was listening to one of my favorite worship songs, "At the Cross" by Hillsong. One of the lines is "Your holy presence surrounding me, in every season, I know you love me . . .You go before me, you shield my way, Your hand upholds me, I know you love me."
I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10
This is one of the hardest things I have ever had to go through, but I do not walk alone. My lord, my savior upholds me and provides me the strength. What an amazing God to use someone as small and weak as Nathan, and someone as sinful as me for his plan and purpose.
I pray you will feel the Lord upholding you, and feel his mighty strength. He is always near. He gave the ultimate sacrifice so we would be eternally free. How great is our God, how great is his love.
Saturday, August 13, 2011
Trials and Triumph
Things change so quickly . . . There have been lots of ups and downs.
Thursday morning there was an issue with a potential exposure to an illness. The probability is very low, but extra strict measures are being taken by the hospital. Thursday day and evening, the devices that T his line to allow for additional IV lines (stop cocks . . . sp?), came undone and he lost a little bit of blood before it was caught. The big deal about that was that his line was open. This increased his risk for a possible infection at a very vulnerable time.
Friday was a very stressful day. Friday morning, the Y portion of his broviac actually came off. No medicine could get in . . . which meant no pain medicine for the mucositis. The Fentanyl leaves his system in about an hour. I wanted to throw up I was so worried. The situation was bad enough, but I could not handle another episode of Nathan screaming in pain again. The hospital did not have the repair kit in stock. They had to get one from another hospital. So I prayed . . .and prayed. God answered my prayer. I fed Nathan right after it happened, and he slept until an IV was started. The IV allowed him to get the pain medicine until the broviac was repaired. Thank you God. He also ate from a bottle and sucked on a pacifier for the first time since chemo (YAY!).
Bottom line four potential exposures in about 24 hours. . . . 24 hours full of triumphs and trials.
Today Nathan would not eat at all. I finally got him to nurse once tonight. I was really hoping he would keep eating since he has done so good. The doctors aren't worried, they did not expect him to eat this early at all. I was so excited, it was another step forward in the healing process. I must have patience.
Thursday morning there was an issue with a potential exposure to an illness. The probability is very low, but extra strict measures are being taken by the hospital. Thursday day and evening, the devices that T his line to allow for additional IV lines (stop cocks . . . sp?), came undone and he lost a little bit of blood before it was caught. The big deal about that was that his line was open. This increased his risk for a possible infection at a very vulnerable time.
Friday was a very stressful day. Friday morning, the Y portion of his broviac actually came off. No medicine could get in . . . which meant no pain medicine for the mucositis. The Fentanyl leaves his system in about an hour. I wanted to throw up I was so worried. The situation was bad enough, but I could not handle another episode of Nathan screaming in pain again. The hospital did not have the repair kit in stock. They had to get one from another hospital. So I prayed . . .and prayed. God answered my prayer. I fed Nathan right after it happened, and he slept until an IV was started. The IV allowed him to get the pain medicine until the broviac was repaired. Thank you God. He also ate from a bottle and sucked on a pacifier for the first time since chemo (YAY!).
Bottom line four potential exposures in about 24 hours. . . . 24 hours full of triumphs and trials.
Today Nathan would not eat at all. I finally got him to nurse once tonight. I was really hoping he would keep eating since he has done so good. The doctors aren't worried, they did not expect him to eat this early at all. I was so excited, it was another step forward in the healing process. I must have patience.
Thursday, August 11, 2011
Busy and Exhausted
So much has happened in the last four days. It's been very busy and extremely exhausting.
Nathan's mucositis got really bad and very painful. He's got sores in his mouth, and down his GI tract. He would cry when we moved him or picked him up. We've adjusted his pain medicine 8 times now. He was throwing up a lot and could not be laid down. We have to suction out his mouth because he could not swallow even his own saliva. I sat in a chair by his bed for almost two days straight. He had 9 IVs going into him at one point. That equals very little sleep. Just when the medicine is adjusted again to make him comfortable, things go down hill again.
On Tuesday, Nathan spiked a fever. They started him on antibiotics. The blood cultures did come back positive for infection. This is very concerning because his white blood cell count and ANC is zero. His body has no ability to fight anything off. By Wednesday the fever was gone, and the culture came back negative. Praise God!
I tried to feed him on Tuesday just to see how he'd respond, and he screamed. Then a huge praise happened last night. He was chewing on his hands, so I figured I'd try again. He ate for the first time in 8 days! God is so good. It was a huge victory, and a very sweet moment. So far he's ate three times and kept it down.
We had another bad pain night last night. I've had less than 3 hours of sleep. We were doing additional doses of the pain meds every hour. He was crying alot. He has almost no voice, so its more of a pathetic shriek than a scream when he's upset. Hopefully in the next five days he will start feeling better. Thank you everyone for your prayers, God is answering them.
Nathan's mucositis got really bad and very painful. He's got sores in his mouth, and down his GI tract. He would cry when we moved him or picked him up. We've adjusted his pain medicine 8 times now. He was throwing up a lot and could not be laid down. We have to suction out his mouth because he could not swallow even his own saliva. I sat in a chair by his bed for almost two days straight. He had 9 IVs going into him at one point. That equals very little sleep. Just when the medicine is adjusted again to make him comfortable, things go down hill again.
On Tuesday, Nathan spiked a fever. They started him on antibiotics. The blood cultures did come back positive for infection. This is very concerning because his white blood cell count and ANC is zero. His body has no ability to fight anything off. By Wednesday the fever was gone, and the culture came back negative. Praise God!
I tried to feed him on Tuesday just to see how he'd respond, and he screamed. Then a huge praise happened last night. He was chewing on his hands, so I figured I'd try again. He ate for the first time in 8 days! God is so good. It was a huge victory, and a very sweet moment. So far he's ate three times and kept it down.
We had another bad pain night last night. I've had less than 3 hours of sleep. We were doing additional doses of the pain meds every hour. He was crying alot. He has almost no voice, so its more of a pathetic shriek than a scream when he's upset. Hopefully in the next five days he will start feeling better. Thank you everyone for your prayers, God is answering them.
Sunday, August 7, 2011
Pain, Pain Go Away
Day +3, A new day . . .
We are blessed to have such wonderful compassionate doctors. We are thankful God has given Nathan and I such a great staff to take care of us.
It was a very long night, up until 2 and up at 5:30 am. It been a pain game, trying to keep Nathan's pain under control. The doctor has increased his pain medication four times now. The medicine he is on is 10 times stronger than morphine, and is given in really small doses. He is on a continual drip, and has still required additional doses. He is finally more relaxed and sleeping. We have to suction his mouth out now because he can't swallow.
His white blood cell count is 30, basically 0. For a normal person it should be around 4000. The sores are expected from the chemo, but they are very painful. They said to expect the sores for another 9 days or so. They actually start to heal a couple days before his white cell counts start to come up.
My "Thank You Fors", as Isaac calls his prayers. I am thankful for the strength and peace that the Lord gave me to get through the night. Today, I am comforted by the promise the Lord has given to his people. I am comforted by the hope we have in him. My hope is also for the day Nathan can swallow again. My hope is for the day we find out the transplant engrafted. God is my rock.
I encourage you to read the book of Psalms. In so many circumstances David calls out to God, as we call out to him now.
Today is the day the Lord has made, we are rejoicing.
We are blessed to have such wonderful compassionate doctors. We are thankful God has given Nathan and I such a great staff to take care of us.
It was a very long night, up until 2 and up at 5:30 am. It been a pain game, trying to keep Nathan's pain under control. The doctor has increased his pain medication four times now. The medicine he is on is 10 times stronger than morphine, and is given in really small doses. He is on a continual drip, and has still required additional doses. He is finally more relaxed and sleeping. We have to suction his mouth out now because he can't swallow.
His white blood cell count is 30, basically 0. For a normal person it should be around 4000. The sores are expected from the chemo, but they are very painful. They said to expect the sores for another 9 days or so. They actually start to heal a couple days before his white cell counts start to come up.
My "Thank You Fors", as Isaac calls his prayers. I am thankful for the strength and peace that the Lord gave me to get through the night. Today, I am comforted by the promise the Lord has given to his people. I am comforted by the hope we have in him. My hope is also for the day Nathan can swallow again. My hope is for the day we find out the transplant engrafted. God is my rock.
I encourage you to read the book of Psalms. In so many circumstances David calls out to God, as we call out to him now.
Today is the day the Lord has made, we are rejoicing.
Saturday, August 6, 2011
"Thank You Fors"
We pray with Isaac at meals, and at night. We start the prayer out with what we are thankful for. So he now calls prayers "Than You Fors". Even though I am at the hospital, Shawn often calls me so I can pray with them at bedtime. Tonight Isaac had a long list of "thank you fors". What a sweet and innocent reminder of how blessed we are.
It has been a stressful afternoon. Thankfully, no more seizures today. I got back to the hospital around 2 pm. Things went down hill pretty quick. Our victory of him finally eating some is now far away. He can not swallow hardly at all, even his own saliva. The white sores are all over his mouth. he was in so much pain, I wanted to go crazy. I was holding him in my arms, and although I couldn't take the cries anymore, I couldn't leave him. He is now on a continual drip of the pain medicine. I hope this will help. Just make him not hurt.
I am so tense my muscles hurt. I still hold on to this scripture:
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
1 Peter 1:6
I am trying to rejoice. Our wonderful father, our healer, who hears our prayers. He has answered so many. Hear my prayer tonight and bring healing to my son.
It has been a stressful afternoon. Thankfully, no more seizures today. I got back to the hospital around 2 pm. Things went down hill pretty quick. Our victory of him finally eating some is now far away. He can not swallow hardly at all, even his own saliva. The white sores are all over his mouth. he was in so much pain, I wanted to go crazy. I was holding him in my arms, and although I couldn't take the cries anymore, I couldn't leave him. He is now on a continual drip of the pain medicine. I hope this will help. Just make him not hurt.
I am so tense my muscles hurt. I still hold on to this scripture:
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
1 Peter 1:6
I am trying to rejoice. Our wonderful father, our healer, who hears our prayers. He has answered so many. Hear my prayer tonight and bring healing to my son.
Friday, August 5, 2011
DAY +1: Cream Corn Anyone?
Nathan reaks of cream corn from the stem cells that were transplanted into him. Its actually the preservative. It's very strange. I'm not sure if I'll ever want to eat it again.
Day one is finally complete, we are in the positives. Nathan is not feeling well. They increased the dose and interval of his pain medication. Once his pain was better under control, he was actually hungry despite the sores in his mouth. I got to feed him for the first time in a couple of days, only for him to promptly puke all over me late last night and again this morning. He clearly doesn't feel well, and doesn't move a whole lot. He's hungry, but can't eat. Last night we noticed him acting very strange and was fixated, and couldn't get him to respond.
The doctors tried a couple of new medications which really perked him up. He was actually playing and smiling, and he ate and kept it down! The he turned his head to the side again and would not respond. His pupils were different sizes. We called the doctor in, and she was there very quickly. She said he was actually having a seizure. I wanted to throw up, I felt sick. I'm holding my son in my arms and was wondering if he will be normal, is he going to be okay. Shawn was there to pick me up with Isaac in the car and couldn't come in to be with us. It was a very scary time.
After some tests, it revealed his calcium levels were low. Calcium was added to his IV, and we will see if this will stop it. Over all, he had four seizures before the doctor saw him having an episode and identified what was going on. I didn't know seizures could be like that. I always imagine people shaking, not being transfixed and turning into a vegetable.
God is good, after some change in medication. He has actually eaten 3 times now and not thrown up. Tonight has ate almost three ounces, which is a huge victory. Shawn is staying the night with Nathan, and I am home with Isaac.
But thanks be to God! He gives us the victory through our Lord Jesus Christ.
1 Corinthians 15:57
Now matter what the trial, there is always much to be thankful for. I really like the scripture from Day 0 in 1 Peter. Our God is good and gives us what we need as we need it. I had to have the strength to be with Isaac and play and love him. . . yet on the inside I am torn, worried about Nathan. I am thankful for that strength the Lord supplied. I am thankful that God is my rock, and the hope we have in him. My hope is for the day I will be able to go for a walk with my two sons.
Day one is finally complete, we are in the positives. Nathan is not feeling well. They increased the dose and interval of his pain medication. Once his pain was better under control, he was actually hungry despite the sores in his mouth. I got to feed him for the first time in a couple of days, only for him to promptly puke all over me late last night and again this morning. He clearly doesn't feel well, and doesn't move a whole lot. He's hungry, but can't eat. Last night we noticed him acting very strange and was fixated, and couldn't get him to respond.
The doctors tried a couple of new medications which really perked him up. He was actually playing and smiling, and he ate and kept it down! The he turned his head to the side again and would not respond. His pupils were different sizes. We called the doctor in, and she was there very quickly. She said he was actually having a seizure. I wanted to throw up, I felt sick. I'm holding my son in my arms and was wondering if he will be normal, is he going to be okay. Shawn was there to pick me up with Isaac in the car and couldn't come in to be with us. It was a very scary time.
After some tests, it revealed his calcium levels were low. Calcium was added to his IV, and we will see if this will stop it. Over all, he had four seizures before the doctor saw him having an episode and identified what was going on. I didn't know seizures could be like that. I always imagine people shaking, not being transfixed and turning into a vegetable.
God is good, after some change in medication. He has actually eaten 3 times now and not thrown up. Tonight has ate almost three ounces, which is a huge victory. Shawn is staying the night with Nathan, and I am home with Isaac.
But thanks be to God! He gives us the victory through our Lord Jesus Christ.
1 Corinthians 15:57
Now matter what the trial, there is always much to be thankful for. I really like the scripture from Day 0 in 1 Peter. Our God is good and gives us what we need as we need it. I had to have the strength to be with Isaac and play and love him. . . yet on the inside I am torn, worried about Nathan. I am thankful for that strength the Lord supplied. I am thankful that God is my rock, and the hope we have in him. My hope is for the day I will be able to go for a walk with my two sons.
Thursday, August 4, 2011
Day 0: Transplant Day
This is the big day. For that we are thankful. He will soon begin the healing process.
Nathan does not feel well. It is breaking my heart. The mucusitis started and he has sores in his mouth and GI tract. The have increased the interval at which he gets his pain medication. He has almost stopped eating and will be put on IV nutrition tonight. All of this the doctors expected, but it still does not make it easy. It unfortunately will probably still get worse. It will be a rough 2-3 weeks. My main prayer is that he is not in pain.
Wednesday, August 3, 2011
Day -1
Tomorrow is transplant day! Yea, we are done with chemo and ready for the next step in our journey. The last couple days were really hard as he was more and more unhappy and uncomfortable. He was finally given pain medication yesterday and it made a huge difference. We got to see his smiles again. It is a relief to know what is wrong, and that we can do something to make him feel better.
God continues to answer prayers. He also continues to amaze me how he uses all of us, despite our sin, to accomplish his plan. For that, I am thankful. He did not design us to walk this journey alone, he built us to be a community to support and serve one another. God is using our circumstances to reveal himself not only to me and my family, but so many others as well.
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
1 Peter 1:6
We are rejoicing, God is good.
God continues to answer prayers. He also continues to amaze me how he uses all of us, despite our sin, to accomplish his plan. For that, I am thankful. He did not design us to walk this journey alone, he built us to be a community to support and serve one another. God is using our circumstances to reveal himself not only to me and my family, but so many others as well.
In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
1 Peter 1:6
We are rejoicing, God is good.
Tuesday, August 2, 2011
Day -2
This is our last day of chemo! He has done such a good job.
He has 4 IV lines, 2 into each broviac line, many oral medications, and 3 mouth washes 4 times a day. He also gets an EKG each morning while on chemo. That has been a challenge. There are twelve leads they have to attach to his chest. By the time they attach one, he's kicked of two more. It took us over an hour yesterday. At first he was sleepy, but he is getting more and more fussy. He probably doesn't feel well. It breaks my heart, I wish I knew how he felt, what to do, and that I could take it away from him. Transplant is on Thursday, another step closer in our journey.
Shawn stayed over night in the hospital with Nathan on Saturday, and I went home with Isaac. It was good for both of us. Our friends were in town, and the boys had a blast. We went to a park with fountains that come out of the ground to run in, then a huge one you can swim in. I go home for dinner on Monday, Wednesday and Friday. Last night when I was picked up Isaac sang the ABC song and Twinkle, Twinkle, Little Star to me . . . it was so cute!
He has 4 IV lines, 2 into each broviac line, many oral medications, and 3 mouth washes 4 times a day. He also gets an EKG each morning while on chemo. That has been a challenge. There are twelve leads they have to attach to his chest. By the time they attach one, he's kicked of two more. It took us over an hour yesterday. At first he was sleepy, but he is getting more and more fussy. He probably doesn't feel well. It breaks my heart, I wish I knew how he felt, what to do, and that I could take it away from him. Transplant is on Thursday, another step closer in our journey.
Shawn stayed over night in the hospital with Nathan on Saturday, and I went home with Isaac. It was good for both of us. Our friends were in town, and the boys had a blast. We went to a park with fountains that come out of the ground to run in, then a huge one you can swim in. I go home for dinner on Monday, Wednesday and Friday. Last night when I was picked up Isaac sang the ABC song and Twinkle, Twinkle, Little Star to me . . . it was so cute!
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