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!
Subscribe to:
Posts (Atom)