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.
Our Journey of Nathan's Transplant
We're Still Rejoicing!
Saturday, August 13, 2011
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.
Subscribe to:
Posts (Atom)