last night was a bit of a scary roller coaster ride in kai’s room. they assure me she’s doing fine and that everything is "normal" but they are living in a whole separate universe as far as "normal" is concerned.
kai has needed 2 blood transfusions (next time i see that red cross van, you better believe my arms will have tourniquets on ’em!) and her right lung is collapsed. she has a lot of fluid coming from her abdomen into a drain that is attached at her side. they have her heavily sedated and on a lot of pain medications, so she is comfortable. she is on a ventilator to help her breath. i’m assured all of this is pretty common in infants right after transplant and that she will gradually get better.
we are holding our breath this week to see if the liver takes. there is a bit of a problem with the blood vessels leading into the liver. ryan’s liver has big ones and kai has little ones so it’s difficult for her body to carry enough blood to ryan’s liver. additionally, they think her liver was cerosing even in the womb and the blood vessels need to be "retrained" in a sense because they haven’t been carrying blood to the failing organ for a long time. this is typically a problem that will fix its self over the course of the week. there is about a 25% chance for a need to retransplant until this issue has passed. no matter what happens, i’ve been assured by kai’s lead surgeon that she will be okay and that he won’t let anything happen to her.
ryan is doing well. he’s very tired and sore. every time i go to see him he asks after kai. i give him the thumbs up and he smiles. he won’t be able to eat or drink anything for several days. they are supposed to get him up and walking to ward off blood clots later today. hopefully they will wheel him up to see his little girl today.
it’s so strange to be on the other side... pre-transplant, all i wanted was this moment. now that i’m here, i can’t wait until next week when we can get official word that we are "out of the woods". of course, life will be a bit different. kai will have to take a lot of medicines at first and we’ll always be aware that we may have to come back and do this again at some point but, the chances decrease dramatically after this week, and then again after 6 months.
i’m doing okay. i’ll be on edge waiting to hear the next update from kai’s surgeons. i’m currently watching a team of people poking and prodding kai, who is still trying to suck her thumb even in this heavily sedated state, and drinking way-too-hot-coffee that i’m sure would taste great if i hadn’t just singed my taste buds on it... and bemoaning the fact that i’m a freak of nature when it comes to producing breast milk as i now have 1000 unnecessary ml (that’s about 34oz) filling my mammories every 4 hours (for those of you not familiar with breastfeeding, that translates to "ouch!")
as always, we deeply appreciate your continued love and support. it’s definitely needed in this turbulent time.
kai has needed 2 blood transfusions (next time i see that red cross van, you better believe my arms will have tourniquets on ’em!) and her right lung is collapsed. she has a lot of fluid coming from her abdomen into a drain that is attached at her side. they have her heavily sedated and on a lot of pain medications, so she is comfortable. she is on a ventilator to help her breath. i’m assured all of this is pretty common in infants right after transplant and that she will gradually get better.
we are holding our breath this week to see if the liver takes. there is a bit of a problem with the blood vessels leading into the liver. ryan’s liver has big ones and kai has little ones so it’s difficult for her body to carry enough blood to ryan’s liver. additionally, they think her liver was cerosing even in the womb and the blood vessels need to be "retrained" in a sense because they haven’t been carrying blood to the failing organ for a long time. this is typically a problem that will fix its self over the course of the week. there is about a 25% chance for a need to retransplant until this issue has passed. no matter what happens, i’ve been assured by kai’s lead surgeon that she will be okay and that he won’t let anything happen to her.
ryan is doing well. he’s very tired and sore. every time i go to see him he asks after kai. i give him the thumbs up and he smiles. he won’t be able to eat or drink anything for several days. they are supposed to get him up and walking to ward off blood clots later today. hopefully they will wheel him up to see his little girl today.
it’s so strange to be on the other side... pre-transplant, all i wanted was this moment. now that i’m here, i can’t wait until next week when we can get official word that we are "out of the woods". of course, life will be a bit different. kai will have to take a lot of medicines at first and we’ll always be aware that we may have to come back and do this again at some point but, the chances decrease dramatically after this week, and then again after 6 months.
i’m doing okay. i’ll be on edge waiting to hear the next update from kai’s surgeons. i’m currently watching a team of people poking and prodding kai, who is still trying to suck her thumb even in this heavily sedated state, and drinking way-too-hot-coffee that i’m sure would taste great if i hadn’t just singed my taste buds on it... and bemoaning the fact that i’m a freak of nature when it comes to producing breast milk as i now have 1000 unnecessary ml (that’s about 34oz) filling my mammories every 4 hours (for those of you not familiar with breastfeeding, that translates to "ouch!")
as always, we deeply appreciate your continued love and support. it’s definitely needed in this turbulent time.
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