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.
Our Journey of Nathan's Transplant
We're Still Rejoicing!
Friday, September 30, 2011
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!
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