Nathan started running a fever late Saturday night. By 6am on Sunday he had thrown up at his fever was over 101. We called the doctor on call and were told to bring him to Cardinal Glennon ER, but that we would probably be admitted. That morning his fever got to 103.6. He was miserable. We were admitted, and within 10 hours his blood cultures were positive for infection.
All we know so far is that there is an infection in his blood. We are waiting on the type and how long we will be here. I am praying for God to heal Nathan's body quickly, and for him to be more comfortable. I am hoping to be out in time for Isaac's birthday in 9 days. His fever is down, but he has been pretty fussy.
Our Journey of Nathan's Transplant
We're Still Rejoicing!
Monday, December 12, 2011
Homecoming: Finally Together
Nathan was released from the hospital Tuesday, November 22nd. I got to put the boys in matching blue and green plaid shirts. It was a sweet day. Isaac was so excited, and it was surreal that Nathan was actually home. Its great to have both of my boys together. It is also a lot of work.
We hook all of Nathans IVs up. His IV nutrition runs from 7pm to 9am, then he has another medication that runs twice a day from 9-11 am and pm. We have to inject the vitamins into the IV nutritrion. Then he has oral medication at 8a, 2p, and 9p. The poor little guy has 6 of them in the morning, and 2 mouth swabs. He does not like it very much, and it has proven to be a challenge. There is constant activity in the house.
Isaac loves spending time with his little brother and making him smile. He even loves wearing shirts that match.
We are starting to get a routine, but it is busy. I have to take Nathan in for out patient treatment every Monday and Thursday. So far we are usually there until 2pm.
God has answered a lot of prayers to bring us this far. He is good!
We hook all of Nathans IVs up. His IV nutrition runs from 7pm to 9am, then he has another medication that runs twice a day from 9-11 am and pm. We have to inject the vitamins into the IV nutritrion. Then he has oral medication at 8a, 2p, and 9p. The poor little guy has 6 of them in the morning, and 2 mouth swabs. He does not like it very much, and it has proven to be a challenge. There is constant activity in the house.
Isaac loves spending time with his little brother and making him smile. He even loves wearing shirts that match.
We are starting to get a routine, but it is busy. I have to take Nathan in for out patient treatment every Monday and Thursday. So far we are usually there until 2pm.
God has answered a lot of prayers to bring us this far. He is good!
Saturday, November 19, 2011
Still Waiting
I have not had access to the computer much of the last week because I got sick too. Isaac was still sick, but I did not come home in the case that I would recover quickly. I did not want to catch what Isaac had. I spent four days over at my grandmas house, which was neat. That is something I hadn't done in years.
I have not been to the hospital in 6 days. We were scrambling trying to find people that were healthy and available to go up and sit with Nathan. Thank you Jane and Grandma Linnie! It was a blessing to us, and Nathan. Yesterday for the first time in over a week Shawn was able to go up and be with Nathan. There was a possibility that Nathan was going to have a double surgery this coming week. He will not have a surgery at this time, it has been postponed to a later date.
The past few weeks have been filled with many disappointments and trials. It has been hard. Honestly at the moment I'm angry with God. I know that he supplies the strength we need for each moment, but it doesn't mean that I like that this has been so hard. He says come to me those who are weary and I will give you rest. I know his word is true, but I am still waiting for rest. The past couple of days I feel like I am alone, as far as human beings on this plant. There is no one to help ease my burden, and so many are giving me more burdens to bear. My heart has been heavy, and I have been weary. I am pressing into God as angry as I am with him. He will be faithful and fulfill his promises . . .
I am thankful that we have a God who will never let us down, because so many times the people we are closest to will. Don't put your faith, or hope, in people. Put your faith in our Lord Jesus, who loves us unconditionally. Right now even some of my closest relationships hurt. God wants me to completely depend on him. Just like so many other times, he takes everything away from me. Its a painful process that I hope I will take with me when this trial is over.
Rejoice . . . God is still answering prayers. My boss is willing to work with me so that i will be able to work remotely for the next 6 months. It is a huge answer to prayer. Hopefully Nathan will be coming home this coming week. Now all we are waiting for is for all of us to be healthy. Thank you everyone for your continued prayers.
I have not been to the hospital in 6 days. We were scrambling trying to find people that were healthy and available to go up and sit with Nathan. Thank you Jane and Grandma Linnie! It was a blessing to us, and Nathan. Yesterday for the first time in over a week Shawn was able to go up and be with Nathan. There was a possibility that Nathan was going to have a double surgery this coming week. He will not have a surgery at this time, it has been postponed to a later date.
The past few weeks have been filled with many disappointments and trials. It has been hard. Honestly at the moment I'm angry with God. I know that he supplies the strength we need for each moment, but it doesn't mean that I like that this has been so hard. He says come to me those who are weary and I will give you rest. I know his word is true, but I am still waiting for rest. The past couple of days I feel like I am alone, as far as human beings on this plant. There is no one to help ease my burden, and so many are giving me more burdens to bear. My heart has been heavy, and I have been weary. I am pressing into God as angry as I am with him. He will be faithful and fulfill his promises . . .
I am thankful that we have a God who will never let us down, because so many times the people we are closest to will. Don't put your faith, or hope, in people. Put your faith in our Lord Jesus, who loves us unconditionally. Right now even some of my closest relationships hurt. God wants me to completely depend on him. Just like so many other times, he takes everything away from me. Its a painful process that I hope I will take with me when this trial is over.
Rejoice . . . God is still answering prayers. My boss is willing to work with me so that i will be able to work remotely for the next 6 months. It is a huge answer to prayer. Hopefully Nathan will be coming home this coming week. Now all we are waiting for is for all of us to be healthy. Thank you everyone for your continued prayers.
Saturday, November 12, 2011
Sad
The past couple days had been filled with disappointments. Today my heart is broken. Cristina was a beautiful 6 year old girl that has been back in the bone marrow unit with us. She passed away this morning. Two months ago, she had her first stem cell transplant. She did great, but the cancer was not gone. She came back 2 weeks ago for a 2nd transplant while we were still in the bone marrow unit. She passed away into the arms of Jesus. I couldn't bear to hear her cries of pain. It seems so unfair for children to suffer like that. It is hard to understand.
She would always waive at me through the door. I even had the privilege to do crafts with her. Her smile would light up the room. Even when she wasn't feeling well she would still waive. Her parents faith in our Lord was a testimony to all. Her dad always has an amazing optimism and a strong faith in God. Her mom has an amazing strength. Please pray for Cristina's parents and brother and sister.
On another note we didnt get to come home Thursday because Isaac is sick. It is the third day that he still has a fever. I can't be with him, because I cant get exposed. I want to make it all better. The longer he is sick, the longer we can't come home. I am worried for him too. My heart is aching. There are some other issues with Nathan, but it is looking very good that we will get released on Monday either.
She would always waive at me through the door. I even had the privilege to do crafts with her. Her smile would light up the room. Even when she wasn't feeling well she would still waive. Her parents faith in our Lord was a testimony to all. Her dad always has an amazing optimism and a strong faith in God. Her mom has an amazing strength. Please pray for Cristina's parents and brother and sister.
On another note we didnt get to come home Thursday because Isaac is sick. It is the third day that he still has a fever. I can't be with him, because I cant get exposed. I want to make it all better. The longer he is sick, the longer we can't come home. I am worried for him too. My heart is aching. There are some other issues with Nathan, but it is looking very good that we will get released on Monday either.
Thursday, November 10, 2011
Prayers answered by disappointment
Today should have been an incredible milestone and the day my family was to be united for the first time. We were supposed to take Nathan home from the hospital, but Isaac got sick 2 hours before were supposed to leave. At first I was angry with God, everything has to be so hard. I had looked forward to this day for so long. But then I realized he answered prayers by keeping us here, to keep Nathan healthy. God allowed Isaac to get sick while Nathan was still in the hospital instead of when we were home. Even though it wasn't the best circumstances, God protected Nathan.
The last week has been a flurry of activity still trying to get the house ready, I had to go back to the ER last Friday because of pain. I'm sorry I haven't been good about posting, emailing, or calling people back.
Nathan is a sweet boy. His smiles and dimples still melt everyone's heart. When people come to his window to talk to him, he breaks out in a huge dimple grin. He is getting very close to turning over. He is getting so vocal, and making lots of new noises. Isaac is filled with joy. He makes up his own songs to sing. Last night he was singing about how he loves the moon, and that the cow goes moo. He has A LOT of energy, and is filled with laughter. He is compassionate to other people. The other day when I was hurting, he brought me a bottle of water and said, "Here Mommy, take a drink. It will make you feel all better." I am thankful for both of my boys.
Last week, Nathans heart dramatically got better. There was months without any change to his condition. The Dr.s are amazed how from the last test 2 weeks ago there is such a dramatic change. I give all credit to God, who was answering many prayers. He still has a slight thickening of the ventricle wall, and will continue on medication, but it is significantly improved. He still is not eating very well. They say if he loses weight we will have to do a tube again.
I am overwhelmed by so many emotions. I am sad, it will be hard to leave. There are many friends we are leaving behind. Many who have supported us through a very difficult journey. There will be a big transition for everyone. I am a little worried. I have been praying for Isaac. He will no longer be the only one at home, and will have a little brother requiring a lot of care. I know do not be anxious about anything right. That is a sin I still struggle with. Emotionally this journey has been very hard for me, it will be a long healing process. I am dealing with Post Traumatic Stress Disorder , social anxiety, and many other things.
We will be released to my Mom's house in Saint Louis. We are be required to stay in the area for 6 months for follow up treatment. We will still go into the hospital 2-3 times a week for outpatient care. Everyone's outside activity will be severely limited. Nathan cannot leave the house but to go to the hospital. Isaac cannot go most places, since he could transmit a virus to Nathan. I even have to do grocery shopping in late hours to reduce exposure. We will be setting up Nathan's IVs and medications at home, which is a little overwhelming.
If you could still stand with us in prayer, this journey is not over. Pray for Shawn to be head our household according to God's word. Please pray for our marriage. Pray we would submit to God, and lovingly serve each other. Pray for me to be the wife God has called me to be. Pray for Nathan to eat so he will not need tubes. Pray for protection for Isaac's spirit in this time, that he will still get the positive attention he needs.
This has been a disappointing and roller coaster of a day. God is good, and he will continue to answer prayers.
Wednesday, November 2, 2011
Rejoice! 7 Days Count Down
Nathan had another follow up echocardiogram yesterday. For weeks his condition had remained unchanged. I was actually thankful, at least it had not gotten worse. Then cardiology called yesterday evening to ask if Nathan had got the echo done, which was wierd. They said it looked so good, they didn't think it was his!! The formal report had lots of big words, but the thickening of his heart is significantly improved. I don't think his heart is normal yet, but this is great news! God is good, and we are so thankful. Than you for being faithful in prayer with us. Little Nathan is a testimony to the good works of our God.
He still is not eating well at all. Yesterday the doctor said the tube word, I am not happy. Please pray that he starts eating so we do not have to do tube feedings again.
We will be "home" to my moms house in 7 days. It was so much work to get the house ready. I think we are finally ready. We are still getting some things, but the cleaning is done. There are lots of details would never have thought about. We can not use hand towels, we will have to use paper towels. I dusted the tops of the air ducts in the basement . . . . and the list goes on.
I have had to do so much that I wasnt supposed to do after my surgery. I am praying that I did not do damage to my body. I might have a hernia though, so I will call the doctor today . . . .
We are so thankful, we are rejoicing. God is good.
He still is not eating well at all. Yesterday the doctor said the tube word, I am not happy. Please pray that he starts eating so we do not have to do tube feedings again.
We will be "home" to my moms house in 7 days. It was so much work to get the house ready. I think we are finally ready. We are still getting some things, but the cleaning is done. There are lots of details would never have thought about. We can not use hand towels, we will have to use paper towels. I dusted the tops of the air ducts in the basement . . . . and the list goes on.
I have had to do so much that I wasnt supposed to do after my surgery. I am praying that I did not do damage to my body. I might have a hernia though, so I will call the doctor today . . . .
We are so thankful, we are rejoicing. God is good.
Tuesday, November 1, 2011
9 Days and Counting
We will be released to my moms house in 9 days. It will be bittersweet to leave our extended family here at Cardinal Glennon. I am looking forward to my two boys being together, and to be able to be with Isaac again. It will be sad to leave our new friends here, and those who have helped us walk this journey.
We have been working feverishly to get the house ready for Nathan to come home. There wasn't any rest after my surgery, there was so much to get done. I just keep praying for God to protect my body becuase I have done everything I'm not supposed to. Its not much better at the hospital, Im not supposed to pick up more than 10 lbs. But I pick up Nathan alot.
Nathan still is not eating well at all. They are expressing concerns over his nutrition. They have even discussed letting him try PO, then putting a tube down to feed him the remaining milk he doesn't eat. I really don't want to have to do that. He still has an enlarged heart, and a thickening of the ventricle wall. We are hoping that will resolve over time. He is getting more hairy with each day. His eyebrows look like fizzy catepillars that will crawl off his face at any moment. The backs of his ears are so dark with hair, it reminds me of a werewolf. He has his beautiful long lashes back, and gorgeous blue eyes. He has a smile that melts everyone's hearts.
My little Isaac, he who laughs, is continuing to keep all of us laughing. He enjoyed the World Series, and even knows some of the players names. "Go Yaddie, hit two home runs." He loves to sing his own little songs. It is so sweet to hear. When Nathan comes homes, Isaac will be restricted on his activities and where he can go. This will present a huge challenge to my enegertic son. We have a new room for him at my moms house. We decorated it in Disney Cars, he is really enjoying it. The room is pretty large, and he loves to just run in it.
On the inside . . . .I'm kind of numb to everything right now. I really don't feel a whole lot of emotions . . . . good or bad. Even when I found out I had to stay in the hospital, or have surgery, I didnt really feel anything. I do get overwhelmed when I go home and see how much there is to do. I am starting to get sad as I have to say goodbye to my nurses one by one.
Pray for details with my job and our finances. Please also pray for the Lord to strengthen our marriage, and for Shawn and I to selflessly love one another. Please pray that Nathan will eat, and for continued healing. It has been a challenging journey, and there will be many more challenges to come. As the Lord promised us, we will see victory,
For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory.”
Deuteronomy 20:4
We have been working feverishly to get the house ready for Nathan to come home. There wasn't any rest after my surgery, there was so much to get done. I just keep praying for God to protect my body becuase I have done everything I'm not supposed to. Its not much better at the hospital, Im not supposed to pick up more than 10 lbs. But I pick up Nathan alot.
Nathan still is not eating well at all. They are expressing concerns over his nutrition. They have even discussed letting him try PO, then putting a tube down to feed him the remaining milk he doesn't eat. I really don't want to have to do that. He still has an enlarged heart, and a thickening of the ventricle wall. We are hoping that will resolve over time. He is getting more hairy with each day. His eyebrows look like fizzy catepillars that will crawl off his face at any moment. The backs of his ears are so dark with hair, it reminds me of a werewolf. He has his beautiful long lashes back, and gorgeous blue eyes. He has a smile that melts everyone's hearts.
My little Isaac, he who laughs, is continuing to keep all of us laughing. He enjoyed the World Series, and even knows some of the players names. "Go Yaddie, hit two home runs." He loves to sing his own little songs. It is so sweet to hear. When Nathan comes homes, Isaac will be restricted on his activities and where he can go. This will present a huge challenge to my enegertic son. We have a new room for him at my moms house. We decorated it in Disney Cars, he is really enjoying it. The room is pretty large, and he loves to just run in it.
On the inside . . . .I'm kind of numb to everything right now. I really don't feel a whole lot of emotions . . . . good or bad. Even when I found out I had to stay in the hospital, or have surgery, I didnt really feel anything. I do get overwhelmed when I go home and see how much there is to do. I am starting to get sad as I have to say goodbye to my nurses one by one.
Pray for details with my job and our finances. Please also pray for the Lord to strengthen our marriage, and for Shawn and I to selflessly love one another. Please pray that Nathan will eat, and for continued healing. It has been a challenging journey, and there will be many more challenges to come. As the Lord promised us, we will see victory,
For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory.”
Deuteronomy 20:4
Thursday, October 27, 2011
Whirlwind of Activity
I am so sorry it has been so long since I last posted. There is so much to share.
We are still on a long slow process of trying to get Nathan to eat. We increased the time off IV nutrition to 8 hours off, then 12 and now we are at 14 hours off nutrition (8 of it is off the pole). He eats better when he's off the pole, and when I feed him. On a good day he will eat 3 to 5 ounces total for the whole day. We were told we would get to come home on the 11th of November.
On Monday at lunch I started having a lot of pain. By Monday night, it was excrutiating and i was sure it was my gallbladder. I went to the ER, and was admitted to the Saint Louis University Hospital. I had an ultrasound Tuesday morning, and my gall bladder was inflamed and the stone was lodged in the neck of the gall bladder. I was so nauseous, it was overwhelming. I could not even keep down water. Monday night to noon on Wednesday when I had my surgery to remove my gallbladder, I was not allowed to eat or drink. I had lots of jello and chicken noodle soup that night, it has never tasted so good.
There is so much preparation for Nathan to come home (to my mom's house). We will be in Saint Louis for another 6 months for follow on treatments. I found out today that Nathan will now be coming home on the 10th of November. I am overwhelmed. The rule of not lifting over 10 pounds or bending over for six weeks . . . . it's quite frankly a joke. With a 3 year old and two days left to deep clean the house . . . no rest for mommies.
So I need to go clean . . . but a huge praise and a quick prayer request. The notification of the huge bill from the insurance company, they were billed for $293,000. We were waiting to find out how much we would owe, and we will only have to pay a little over $1,000. God is faithful, and we are so blessed. Please pray that God will work out the details for my job and that I will be able to work remotely. Please also pray for us to trust God with our finances, and for the Lord to continue to strengthen our marriage.
Thank you everyone for your prayers!
We are still on a long slow process of trying to get Nathan to eat. We increased the time off IV nutrition to 8 hours off, then 12 and now we are at 14 hours off nutrition (8 of it is off the pole). He eats better when he's off the pole, and when I feed him. On a good day he will eat 3 to 5 ounces total for the whole day. We were told we would get to come home on the 11th of November.
On Monday at lunch I started having a lot of pain. By Monday night, it was excrutiating and i was sure it was my gallbladder. I went to the ER, and was admitted to the Saint Louis University Hospital. I had an ultrasound Tuesday morning, and my gall bladder was inflamed and the stone was lodged in the neck of the gall bladder. I was so nauseous, it was overwhelming. I could not even keep down water. Monday night to noon on Wednesday when I had my surgery to remove my gallbladder, I was not allowed to eat or drink. I had lots of jello and chicken noodle soup that night, it has never tasted so good.
There is so much preparation for Nathan to come home (to my mom's house). We will be in Saint Louis for another 6 months for follow on treatments. I found out today that Nathan will now be coming home on the 10th of November. I am overwhelmed. The rule of not lifting over 10 pounds or bending over for six weeks . . . . it's quite frankly a joke. With a 3 year old and two days left to deep clean the house . . . no rest for mommies.
So I need to go clean . . . but a huge praise and a quick prayer request. The notification of the huge bill from the insurance company, they were billed for $293,000. We were waiting to find out how much we would owe, and we will only have to pay a little over $1,000. God is faithful, and we are so blessed. Please pray that God will work out the details for my job and that I will be able to work remotely. Please also pray for us to trust God with our finances, and for the Lord to continue to strengthen our marriage.
Thank you everyone for your prayers!
Tuesday, October 11, 2011
Great is Thy Faithfulness: Answered Prayers
How can I do anything but rejoice. My heart is thankful. So many have stood with us in prayer for Nathan, more people than I will ever know. Our God is faithful, and he has answered so many prayers. Nathan's heart rate and respirations have gone back almost to normal.
It has been a major battle getting him to eat again. The mucositis , chemo and meds have given him a complete oral aversion. The results of the scope showed no abnormalities in his throat, stomach or small intestine. Praise God the biopsy results were also negative. Since all the tests came back normal, it really is all in his head that he doesn't want anything in his mouth. Eating is a painfully slow process requiring a lot of patience (again). I been doing positive touch to his face, getting him to suck on a pacifier and consistent feedings. He was off the IV pole for 4 hours a day. He eats better when the TPN is off, so starting yesterday it got increased to 6 hours a day.
He is such a different baby now that the feeding tube is out. He smiles so much, and most of the time is very happy. He is throwing up a lot less. We got to play on a special mat on the floor yesterday for the first time. There are so many things that I had taken for granted with Isaac. Being able to walk around the room with my baby, eating, sucking, and just playing on the floor are huge victories for us. This is a testimony to how faith god is, and how our prayers were answered.
For great is his love toward us, and the faithfulness of the LORD endures forever. Praise the LORD.
Psalm 117:2
Because of the LORD’s great love we are not consumed, for his compassions never fail.
The doctors are saying we may be able to go home in a month!
Every day is not easy, but I keep telling myself. . . the joy of the Lord is not conditional on our circumstances. God's goodness does not change due to our circumstances. Our father does not change, his faithfulness, his never ending grace, and unconditional love do not change.
I mess up a lot. Despite my sinfulness, he can still use me for his purpose. I am humbled. He uses others around me to minister to me, even people that don't have the same faith. He knows our hearts, our needs, our hurts and our joys. Our God is good. This is the day the Lord has made, let everything in me rejoice and praise his name.
It has been a major battle getting him to eat again. The mucositis , chemo and meds have given him a complete oral aversion. The results of the scope showed no abnormalities in his throat, stomach or small intestine. Praise God the biopsy results were also negative. Since all the tests came back normal, it really is all in his head that he doesn't want anything in his mouth. Eating is a painfully slow process requiring a lot of patience (again). I been doing positive touch to his face, getting him to suck on a pacifier and consistent feedings. He was off the IV pole for 4 hours a day. He eats better when the TPN is off, so starting yesterday it got increased to 6 hours a day.
He is such a different baby now that the feeding tube is out. He smiles so much, and most of the time is very happy. He is throwing up a lot less. We got to play on a special mat on the floor yesterday for the first time. There are so many things that I had taken for granted with Isaac. Being able to walk around the room with my baby, eating, sucking, and just playing on the floor are huge victories for us. This is a testimony to how faith god is, and how our prayers were answered.
For great is his love toward us, and the faithfulness of the LORD endures forever. Praise the LORD.
Psalm 117:2
They are new every morning; great is your faithfulness.
Lamentations 3:22-23
The doctors are saying we may be able to go home in a month!
Every day is not easy, but I keep telling myself. . . the joy of the Lord is not conditional on our circumstances. God's goodness does not change due to our circumstances. Our father does not change, his faithfulness, his never ending grace, and unconditional love do not change.
I mess up a lot. Despite my sinfulness, he can still use me for his purpose. I am humbled. He uses others around me to minister to me, even people that don't have the same faith. He knows our hearts, our needs, our hurts and our joys. Our God is good. This is the day the Lord has made, let everything in me rejoice and praise his name.
Monday, October 3, 2011
Progress
Nathans feeding tube was taken out at 9am this morning. He still has thrown up 4 or 5 times. He is not eating well, but did breastfeed once today for 7 minutes! His IV nutrition is only on for 20 hours per day. I asked if his 4 hour off time could be during the day. Then the nurse worked with the doctors to arrange that he is IV free for four hours a day so we are not attached to the pole! It was such a great feeling. I can not even describe how good it felt to be able to walk around with him. I just held him in my arms and spun around because I could. Thank you God for these victories!
He has so many sweet smiles. He has started to do little laughs, it is so neat to hear. He coos alot and is very attentive to people when they talk to him.
Please pray for Nathan to eat so we don't have to put the tube back in. Thank you so much for praying with us. I wish I could better relay how God has been answering our prayers. It has been a slow process requiring a lot of patience, but God is faithful.
He has so many sweet smiles. He has started to do little laughs, it is so neat to hear. He coos alot and is very attentive to people when they talk to him.
Please pray for Nathan to eat so we don't have to put the tube back in. Thank you so much for praying with us. I wish I could better relay how God has been answering our prayers. It has been a slow process requiring a lot of patience, but God is faithful.
Sunday, October 2, 2011
Tube be gone!
They are going to remove Nathan's feeding tube this morning in the case that it is the cause of Nathan gagging and throwing up. Please pray that he will eat on his own and not throw up so we do not have to put it in again. We should have the biopsy results on Tuesday or Wednesday. Please also pray that they come back clear.
Saturday, October 1, 2011
He Knows My Name
I promised to be real and transparent.
Real is that its hard. Why does God's faith building trials have to be so hard. I guess that means I don't learn very easy. I know he is my source . . . Its just a painful lesson right now. I always prayed that I would know what his will is beyond a shadow of a doubt. I wanted the neon sign. Be careful what you pray for. Right now, I know he is telling me and showing me that I need to depend on only him. But depending is hard. Sometimes I can't help but feel that God has taken so much from me.
. . .For unto whomsoever much is given, of him shall be much required: and to whom men have committed much, of him they will ask the more. Luke 12:48
I grieve for our family the way it was, I miss my little boy, and his sweet smile and laugh. I miss a comfortable bed, I long for a life without tubes, pumps and monitors. I want my boys to be together. I have a wonderful husband but sometimes I just want him with me so bad. Yet I am here in this hospital room. Sometimes I don't want to be strong anymore. I know I am blessed, but my heart still aches.
So here is the answer:
He knows my name, he knows your name. This is not just a song, but the promise we have in the Lord. He is our comforter. Here are the Lyrics . . . .
I have a Maker
He formed my heart
Before even time began
My life was in his hands
He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
[ Lyrics from: http://www.lyricsmode.com/lyrics/t/tommy_walker/he_knows_my_name.html ]
I have a Father
He calls me His own
He'll never leave me
No matter where I go
He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
http://www.youtube.com/watch?v=CC8puwexBBo
[ Praise to the God of All Comfort ] Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort.
2 Corinthians 1:3
You number and record my wanderings; put my tears into Your bottle--are they not in Your book? Then shall my enemies turn back in the day that I cry out; this I know, for God is for me.
Psalm 56:8-9
He will turn our sorrow into great joy. . . In 1 Peter it says how there will be trials for a little while but then great joy. I cling to the hope I have in the Lord, that the day of joy will come. Where we end, Christ begins.
Real is that its hard. Why does God's faith building trials have to be so hard. I guess that means I don't learn very easy. I know he is my source . . . Its just a painful lesson right now. I always prayed that I would know what his will is beyond a shadow of a doubt. I wanted the neon sign. Be careful what you pray for. Right now, I know he is telling me and showing me that I need to depend on only him. But depending is hard. Sometimes I can't help but feel that God has taken so much from me.
. . .For unto whomsoever much is given, of him shall be much required: and to whom men have committed much, of him they will ask the more. Luke 12:48
I grieve for our family the way it was, I miss my little boy, and his sweet smile and laugh. I miss a comfortable bed, I long for a life without tubes, pumps and monitors. I want my boys to be together. I have a wonderful husband but sometimes I just want him with me so bad. Yet I am here in this hospital room. Sometimes I don't want to be strong anymore. I know I am blessed, but my heart still aches.
So here is the answer:
He knows my name, he knows your name. This is not just a song, but the promise we have in the Lord. He is our comforter. Here are the Lyrics . . . .
I have a Maker
He formed my heart
Before even time began
My life was in his hands
He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
[ Lyrics from: http://www.lyricsmode.com/lyrics/t/tommy_walker/he_knows_my_name.html ]
I have a Father
He calls me His own
He'll never leave me
No matter where I go
He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
http://www.youtube.com/watch?v=CC8puwexBBo
[ Praise to the God of All Comfort ] Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort.
2 Corinthians 1:3
You number and record my wanderings; put my tears into Your bottle--are they not in Your book? Then shall my enemies turn back in the day that I cry out; this I know, for God is for me.
Psalm 56:8-9
He will turn our sorrow into great joy. . . In 1 Peter it says how there will be trials for a little while but then great joy. I cling to the hope I have in the Lord, that the day of joy will come. Where we end, Christ begins.
Friday, September 30, 2011
Procedure Accomplished
Nathan had his scope today, and he did a great job! He is such a brave boy. I got to take him into the procedure room, and be with him until they put him under. The doctors could not see anything with the eye. They took a biopsy of his esophagus, stomach and small intestine. We will get the results back mid next week.
I am praying that they do not find Graft vs. Host or GVH. That is when the donors bone marrow is attacking the body. Nathan has had no other symptoms of that so far.
He was so sweet yesterday with lots of smiles even though he was pretty pukey.
Off I go to spend some time with Isaac.
I am praying that they do not find Graft vs. Host or GVH. That is when the donors bone marrow is attacking the body. Nathan has had no other symptoms of that so far.
He was so sweet yesterday with lots of smiles even though he was pretty pukey.
Off I go to spend some time with Isaac.
Thursday, September 29, 2011
108 and still counting
So today marks the 108th day at Cardinal Glennon Hospital, technically Ive been in the hospital for 114 days with the 6 days in the hospital in KC. This is not an instance when I would say time flies. . . . Then again, I can't believe it is October already.
On Tuesday Nathan had a procedure in which they put berrium in his tube to see how liquid was moving through his upper GI tract. It showed ther was abnormality in the lining of the small intestine, but that liquid was moving through. Yesterday we got a formal consult with GI. Nathan is getting a scope procedure done tomorrow and a biopsy of his esophagus, stomach and small intestine. I hope they can figure out why he is throwing up so much. They are unsure of the cause of the inflamation of his small intestine until they have the results of the procedure tomorrow. I'm a little worried, there is a possibility that it is Graft vs. Host disease (GVH). That is when the graft immune system is attacking the body. I'm praying it is something that is easy to treat.
I had a great day yesterday, I finally got to see Isaac. Shawn got sick Monday night and I could not go home. Nathan also laughed for the first time, it was very sweet. And, the cardinals won the wild card! Thank you God for these great moments!
I had a great day yesterday, I finally got to see Isaac. Shawn got sick Monday night and I could not go home. Nathan also laughed for the first time, it was very sweet. And, the cardinals won the wild card! Thank you God for these great moments!
Saturday, September 24, 2011
Guy's night!
That's right, Dad and Nathan are in the house! Well, a 13x13 glass room at least.
I haven't posted on the blog since the week Nathan was born. God knows I have tried, but I seem to have a hard time putting my thoughts and feelings down for others to read.
So I was sick with a cold most of last week. I hope anyone I was around didn't get it. I wasn't able to see much of Beth or Nathan during this time since we want to isolate the sickness as much as possible. I sure did miss being around people. I really missed Nathan. He has changed so much over a weeks time. He coos and makes the cutest baby noises now. He genuinely seems happy sometimes and graces us with the sweetest smiles.
He is no longer on oxygen, and the doctors think he may have had pneumonia but seems to be clear now. So much so that they reduced his antibiotics to twice a day from three.
One other thing I am not sure if Beth mentioned it yet, but the test that checks his blood shows that he now has the blood of the little girl the cord came from. That's right, when the engraftment occurs the cord blood donors sex and blood type will eventually become his. It is so strange to think he has a different blood type than he was born with, but it is all part of the process for him to heal.
I started back to work this last week as well. Nice to be feeling ill and having to go through this on top of getting back into the work mode and not be able to see my family all at the same time. What a mess. Oh well. things are coming back together. I was able to find a place to work not too far away from STL. A little place called Wentsville where we have a decent sized office. Its a long drive, but about 2/3 of what I drove back in KC and a lot less highway changes. I have also had many people at work send me well wishes and prayers since I have been back. Thanks so much all, its nice to be back.
I have also been staying busy working on the in laws house finishing a portion of the basement. This room, once finished, will be where Isaac sleeps once Nathan is home. A little carpentry, wiring and sheet rock and it will look great. I also had to seal up the whole bottom half of the house. Having gone through the efficiency course with my own house I could see a lot of places to improve.
It helps me stay optimistic to think about a future with Nathan in it. When that doesn't work I just have to pray, a lot. Speaking of prayers, thanks for all the continued prayers and thoughts and support from everyone. It means so much to hear from family and friends. Please do not be afraid to call and say hello.
God bless!
Shawn and Nathan
I haven't posted on the blog since the week Nathan was born. God knows I have tried, but I seem to have a hard time putting my thoughts and feelings down for others to read.
So I was sick with a cold most of last week. I hope anyone I was around didn't get it. I wasn't able to see much of Beth or Nathan during this time since we want to isolate the sickness as much as possible. I sure did miss being around people. I really missed Nathan. He has changed so much over a weeks time. He coos and makes the cutest baby noises now. He genuinely seems happy sometimes and graces us with the sweetest smiles.
He is no longer on oxygen, and the doctors think he may have had pneumonia but seems to be clear now. So much so that they reduced his antibiotics to twice a day from three.
One other thing I am not sure if Beth mentioned it yet, but the test that checks his blood shows that he now has the blood of the little girl the cord came from. That's right, when the engraftment occurs the cord blood donors sex and blood type will eventually become his. It is so strange to think he has a different blood type than he was born with, but it is all part of the process for him to heal.
I started back to work this last week as well. Nice to be feeling ill and having to go through this on top of getting back into the work mode and not be able to see my family all at the same time. What a mess. Oh well. things are coming back together. I was able to find a place to work not too far away from STL. A little place called Wentsville where we have a decent sized office. Its a long drive, but about 2/3 of what I drove back in KC and a lot less highway changes. I have also had many people at work send me well wishes and prayers since I have been back. Thanks so much all, its nice to be back.
I have also been staying busy working on the in laws house finishing a portion of the basement. This room, once finished, will be where Isaac sleeps once Nathan is home. A little carpentry, wiring and sheet rock and it will look great. I also had to seal up the whole bottom half of the house. Having gone through the efficiency course with my own house I could see a lot of places to improve.
It helps me stay optimistic to think about a future with Nathan in it. When that doesn't work I just have to pray, a lot. Speaking of prayers, thanks for all the continued prayers and thoughts and support from everyone. It means so much to hear from family and friends. Please do not be afraid to call and say hello.
God bless!
Shawn and Nathan
Monday, September 19, 2011
Strength and Weakness
Once again it has been a roller coaster. Sorry it has been so long since I posted. On Tuesday of last week, I got sick. I was actually out of the hospital by chance for an outing with my family. I made the decision to go home instead of back to the hospital, and it was a good thing I had. I did not go back to the hospital until Thursday morning.
He had changed so much, his face started to fill out. He still was throwing up, but he was happy. The doctors decided to turn down the rate of the feeding tube. He spiked a fever Friday night, but has been fine since. Then over the weekend, he started throwing up a lot more. His heart rate increased again, and his respiratory rate. We had to do blow by oxygen again. The monitor alarm was constantly going off again. My heart sunk. I was so anxious and worried, this is how his heart problem started last time. An Xray showed his heart was actually smaller. At first they thought it looked good, but later said when he threw up in his sleep and he might have gotten something in his lungs.
Saturday he was very agitated and uncomfortable. He started sneezing and coughing. The night was rough, I got so little sleep. I was up with him every one to two hours. I have to hold him most of the time. I have to wait for the nurse to have a free moment to even pump, go to the bathroom, much less eat. I tried to not leave him alone since he was throwing up so much. He'd be asleep in my arms, but the moment I laid him in the bed he'd wake up. My body was at its physical limit. Two nights in a row with such little sleep, on top of already being exhausted. I felt so weak. Thank god, Sunday was better and I did get a nap. Otherwise, I don't know how I would have done it. This has been pretty rough on my body. I have gallstones (which the surgery is scheduled for mid October to get my gall bladder taken out), UTI, and I think I have an ulcer now. I am thankful the lord continuously provides the strength I need for each day, even when I feel weak.
They stopped the continuous feed on Sunday. Since then he hasn't thrown up as much. We get a repeat echo cardiogram today. Please pray for his heart and lungs to heal, and for his digestive system to start functioning properly.
I was thankful to have spent some time with our friends that were in town this weekend. It was a much needed break. I am thankful for my brothers and sisters. God just keeps showing me that I need to continue to depend on him. He continues to use the people around me to minister and encourage me. Joy is a choice, and I try to choose to be joyful, even when it is hard, or I'm tired. The joy of the lord is not conditional or situational.
The righteous will rejoice in the LORD and take refuge in him; all the upright in heart will glory in him!
Psalm 64:10
Rejoice in the Lord always. I will say it again: Rejoice!
Philippians 4:4
A fun answer to prayers and how God know the desires of our hearts. I had wanted to take Isaac to Toy Story on Ice. We pass the sign on the way home from the hospital and he asks to go see Woody and Buzz. When I looked the tickets, they were too expensive. I happened to ask the hospital to see if they by chance had discount tickets. One of the organizations had tickets and I got 3 free tickets for this Saturday!! We have so much to be thankful for. He is good.
He had changed so much, his face started to fill out. He still was throwing up, but he was happy. The doctors decided to turn down the rate of the feeding tube. He spiked a fever Friday night, but has been fine since. Then over the weekend, he started throwing up a lot more. His heart rate increased again, and his respiratory rate. We had to do blow by oxygen again. The monitor alarm was constantly going off again. My heart sunk. I was so anxious and worried, this is how his heart problem started last time. An Xray showed his heart was actually smaller. At first they thought it looked good, but later said when he threw up in his sleep and he might have gotten something in his lungs.
Saturday he was very agitated and uncomfortable. He started sneezing and coughing. The night was rough, I got so little sleep. I was up with him every one to two hours. I have to hold him most of the time. I have to wait for the nurse to have a free moment to even pump, go to the bathroom, much less eat. I tried to not leave him alone since he was throwing up so much. He'd be asleep in my arms, but the moment I laid him in the bed he'd wake up. My body was at its physical limit. Two nights in a row with such little sleep, on top of already being exhausted. I felt so weak. Thank god, Sunday was better and I did get a nap. Otherwise, I don't know how I would have done it. This has been pretty rough on my body. I have gallstones (which the surgery is scheduled for mid October to get my gall bladder taken out), UTI, and I think I have an ulcer now. I am thankful the lord continuously provides the strength I need for each day, even when I feel weak.
They stopped the continuous feed on Sunday. Since then he hasn't thrown up as much. We get a repeat echo cardiogram today. Please pray for his heart and lungs to heal, and for his digestive system to start functioning properly.
I was thankful to have spent some time with our friends that were in town this weekend. It was a much needed break. I am thankful for my brothers and sisters. God just keeps showing me that I need to continue to depend on him. He continues to use the people around me to minister and encourage me. Joy is a choice, and I try to choose to be joyful, even when it is hard, or I'm tired. The joy of the lord is not conditional or situational.
The righteous will rejoice in the LORD and take refuge in him; all the upright in heart will glory in him!
Psalm 64:10
Rejoice in the Lord always. I will say it again: Rejoice!
Philippians 4:4
A fun answer to prayers and how God know the desires of our hearts. I had wanted to take Isaac to Toy Story on Ice. We pass the sign on the way home from the hospital and he asks to go see Woody and Buzz. When I looked the tickets, they were too expensive. I happened to ask the hospital to see if they by chance had discount tickets. One of the organizations had tickets and I got 3 free tickets for this Saturday!! We have so much to be thankful for. He is good.
Monday, September 12, 2011
Slow and Steady Progress
We were able to leave the ICU and return to the bone marrow unit on Thursday afternoon. It was good to be back "home". The ICU was not a fun place. The scrub in procedures were not as strict as they are in the stem cell unit. There are some pretty sick kiddos in the ICU and it presented a higher risk of exposure for Nathan to be there. A repeat echo cardiogram was done on Friday and today, both showed the effusion (fluid around the heart) is improved. The cardiomyopathy (thickening of the heart) is still the same, but has not gotten any worse.
As of Friday, Nathan was still eating minimal amounts so the doctors decided to put in a feeding tube. If the body goes for long periods of time without processing food, the body "forgets" how to digest food. The lining of the intestines can atrophy, and it is a very slow process to get the digestive system to function again. They started him out at 5mL (1/6 of an ounce) an hour of breast milk. He has been throwing up, but only 2-3 times a day. Today they are increasing the rate to 7.6 mL an hour. He also ate an ounce for the occupational therapist!
We are hoping we are finally on a slow and steady path of improvement. The doctors believe his heart will heal itself, that it will just take time. This is good news.
Thank you everyone for your prayers and encouragement. We are thankful God did not intend to go through this alone, but gave us the church, his body to walk with us.
As iron sharpens iron so one person sharpens another.
Proverbs 27:17
This is an incredible testimony to how wonderful God is to use us to glorify him and show himself through each other. We are so thankful for each and every one of you. Thank you for standing with us in prayer, God is faithful! Let your light shine!
As of Friday, Nathan was still eating minimal amounts so the doctors decided to put in a feeding tube. If the body goes for long periods of time without processing food, the body "forgets" how to digest food. The lining of the intestines can atrophy, and it is a very slow process to get the digestive system to function again. They started him out at 5mL (1/6 of an ounce) an hour of breast milk. He has been throwing up, but only 2-3 times a day. Today they are increasing the rate to 7.6 mL an hour. He also ate an ounce for the occupational therapist!
We are hoping we are finally on a slow and steady path of improvement. The doctors believe his heart will heal itself, that it will just take time. This is good news.
Thank you everyone for your prayers and encouragement. We are thankful God did not intend to go through this alone, but gave us the church, his body to walk with us.
As iron sharpens iron so one person sharpens another.
Proverbs 27:17
This is an incredible testimony to how wonderful God is to use us to glorify him and show himself through each other. We are so thankful for each and every one of you. Thank you for standing with us in prayer, God is faithful! Let your light shine!
Wednesday, September 7, 2011
Stand on What You Know
Happy 3 month day Nathan!
They had found a thickening of the wall of his left ventricle in his heart, and then about a week ago, Nathan started experiencing trouble breathing. They had done a series of 3 chest Xrays. The second showed an increase in fluid in his lungs, and he was put on oxygen. It was pretty scary he would desat so often, I hated hearing the alarm go off. He even started de-sating while on oxygen which was worrisome. Then over the weekend his breathing started getting better, and the chest Xray showed an improvement. The echocardiogram was yesterday. I expected it to be better too. Much to our surprise it showed an infusion on his heart. There was an accumulation of fluid between the sac and the heart, and was putting pressure on his heart. This is a very serious condition in which if left untreated may prevent his heart from pumping blood. He had a procedure today called a tap, in which they extracted the fluid from around his heart. It was performed in a special OR called a cardiac cath lab. They got a half an ounce (15mL) of fluid. There should be 1 mL. He left the fluid behind the heart because it was too difficult to reach (about another 10mL). We will be staying in the Pediatric Intesive Care Unit overnight.
It never ceases to amaze me how God uses others to encourage and speak to us. The cleaning lady came in today and told the story of her, her sister and her mom's battle with cancer. She kept telling me, "be positive and stand on what you know". I thought of these scriptures:
The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold.
Psalm 18:2
They had found a thickening of the wall of his left ventricle in his heart, and then about a week ago, Nathan started experiencing trouble breathing. They had done a series of 3 chest Xrays. The second showed an increase in fluid in his lungs, and he was put on oxygen. It was pretty scary he would desat so often, I hated hearing the alarm go off. He even started de-sating while on oxygen which was worrisome. Then over the weekend his breathing started getting better, and the chest Xray showed an improvement. The echocardiogram was yesterday. I expected it to be better too. Much to our surprise it showed an infusion on his heart. There was an accumulation of fluid between the sac and the heart, and was putting pressure on his heart. This is a very serious condition in which if left untreated may prevent his heart from pumping blood. He had a procedure today called a tap, in which they extracted the fluid from around his heart. It was performed in a special OR called a cardiac cath lab. They got a half an ounce (15mL) of fluid. There should be 1 mL. He left the fluid behind the heart because it was too difficult to reach (about another 10mL). We will be staying in the Pediatric Intesive Care Unit overnight.
It never ceases to amaze me how God uses others to encourage and speak to us. The cleaning lady came in today and told the story of her, her sister and her mom's battle with cancer. She kept telling me, "be positive and stand on what you know". I thought of these scriptures:
The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold.
Psalm 18:2
Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.
Matthew 7:24-25
The Lord is my rock and my foundation. It is through him I have hope and strength. I do not have the strength on my own, I must rely on him. I must not look even to my husband for comfort and strength, but look to our almighty father. I sometimes long to find comfort in people or things here on earth. The lord is using this circumstance to say: come to me, depend on me and nothing else. My joy in the Lord must not be situational. I pray that I can grow in the Lord and let the Lord be my source and strength. I will stand on what I know!
Wednesday, August 31, 2011
One Step Forward, One Step Back
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.
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.
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.
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