Monday night Kaitlyn was up most of the night. Her heart rate was high and her oxygen concentrations were starting to dip. I gave her meds to try to get her heart rate down so that she could rest but nothing really worked too well.
Today she started to have fluctuations again in her heart rate during the day. So far we had only seen it happen at night. We are obviously very worried for her. We know that there isn't anything that we can do but keep her comfortable. Hospice has told us that if her heart rate and oxygen levels fluctuate that we should alternate diazepam (Valium) and morphine.
Pray that tonight she gets some rest!
On a different note, we have been thinking about how we can help to further the research that Dr. Wasserstein and the group up at Mount Sinai are doing on NP Type A. They have never studied an actual body of a child with Type A after they have passed away. I called Dr. Wasserstein to discuss what would benefit them the most. She said that samples of cells from different parts of the body would help them in their research. Especially to see if sphingomyelin is stored in the intestines or not. Something that has never been proven. Dr. Wasserstein said that it would be minimally invasive and the samples of cells can be done by a pathologist locally after she passes away and then sent up to them in NYC. Chip and I decided that we are going to do this. I feel really good about this decision.
Please continue to pray for Kaitlyn. We really just want her to be comfortable and pain-free. Please also pray for me and Chip that we will be able to have the strength and courage to be the best parents we can be to Kaitlyn and Cole during this time and to remember that she is still here! :-)
Today she started to have fluctuations again in her heart rate during the day. So far we had only seen it happen at night. We are obviously very worried for her. We know that there isn't anything that we can do but keep her comfortable. Hospice has told us that if her heart rate and oxygen levels fluctuate that we should alternate diazepam (Valium) and morphine.
Pray that tonight she gets some rest!
On a different note, we have been thinking about how we can help to further the research that Dr. Wasserstein and the group up at Mount Sinai are doing on NP Type A. They have never studied an actual body of a child with Type A after they have passed away. I called Dr. Wasserstein to discuss what would benefit them the most. She said that samples of cells from different parts of the body would help them in their research. Especially to see if sphingomyelin is stored in the intestines or not. Something that has never been proven. Dr. Wasserstein said that it would be minimally invasive and the samples of cells can be done by a pathologist locally after she passes away and then sent up to them in NYC. Chip and I decided that we are going to do this. I feel really good about this decision.
Please continue to pray for Kaitlyn. We really just want her to be comfortable and pain-free. Please also pray for me and Chip that we will be able to have the strength and courage to be the best parents we can be to Kaitlyn and Cole during this time and to remember that she is still here! :-)
You guys inspire me each and everyday. Kaitlyn is a very special little girl with very special parents.
ReplyDeleteWhat a selfless and wonderful decision, to allow the Doctors to examine Kaitlyn's cells to help find a cure. That is wonderful and says so much about you and Chip.
ReplyDeletePraying for Kaitlyn's peace and comfort, and your strength.
You guys and Kaitlyn's life are truly amazing. Praying hard for you. "The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zeph 3:17
ReplyDeletePraying for a peaceful and restful night for all of you!
ReplyDeleteI think it is an amazing decision to donate a small part of Kaitlyn for research. In this way she really will live forever. It very may save other little children in the same predicament. Praying that she rests well and with no pain.
ReplyDeleteWhat a wonderful decision to help others like Kaitlyn. Blessings to all of you.
ReplyDeleteThat's an incredible decision. In addition to being wonderful parents, you're doing as much as you can to ensure that future children will live in a world without NPD. There's no other alternative, but keep on keepin' on.
ReplyDeleteWhat a great decision! I continue to admire you and your strength. Hope all is well and peaceful.
ReplyDeleteYour strength & courage is an inspiration to all of. Both of you are wonderful parents. God Bless your family
ReplyDeleteI'm amazed at how you are able to be so generous during this time - Praying for comfort for all of you. Thank you again for sharing with all of us, I think of you and little Kaitlyn so often.
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