a place for news and prayer for the Brown Family during Ian's journey with Leukemia. please encourage them by leaving a comment on the posts you read. check out the "help out" page for information such as where to send mail...
Tuesday, March 12, 2013
Love 11 Long!
Ok, quick postscript. We are now checked in at 11 Long and the doctors here have decided against the ER advice to drain the fluid in his stomach. They are ordering a better ultrasound than the ER one and will proceed from there, beginning with the least invasive diagnostics. They were so informed and understanding. We are really thankful for this place.
Day 34: Home Sweet Hospital
Well, we are still in the ER but anxiously awaiting our admission into good old 11 Long with all the amazing nurses and doctors that know Ian and his situation well. 11 Long at UCSF has been a home away from home off and on for several months now. The blood work from our clinic appointment this morning showed elevated counts from his kidneys and liver and low platelets once again, so they immediately decided to admit him to the hospital. Until a bed opens up, we are bunking at the ER where the standard of care is, well... a bit scary. They assured us he will be in 11 Long sometime tonight.
We still only have questions, but here are some steps they have talked about so far to try to come up with some answers:
Step One: He has gained several pounds from bloating with very little eating and an ultrasound today showed quite a bit of excess fluid. They are planning to give a second infusion of platelets and then draw some of the extra fluid from his stomach to bring some relief and to check for bacterial infection.
Step Two: They are supercharging him with IV fluids since dehydration can cause higher liver and kidney blood results. They still want to do a CT scan but the dye used can cause more damage to his liver, so they are waiting to see if they can hydrate him well and check out the bacterial infection first.
Step Three: Depending on how things go, they may also do a scope of his GI tract and a biopsy of any suspicious areas to check for GVHD.
Although the ER is a scary place for an immuno-compromised person especially, I am very grateful that Ian is being admitted back to UCSF. I have been really concerned about him as I've watched him going downhill, and now I know they see it and will pursue figuring out why. Please pray they find the right answers as soon as possible and Ian recovers his strength and health quickly.
Thank you so much for all your prayers and words of encouragement today. I felt lifted up in a big way! I think Ian is feeling it too, although he is still pretty out of order. We are so grateful for the chorus of support and prayers carrying us along!
We still only have questions, but here are some steps they have talked about so far to try to come up with some answers:
Step One: He has gained several pounds from bloating with very little eating and an ultrasound today showed quite a bit of excess fluid. They are planning to give a second infusion of platelets and then draw some of the extra fluid from his stomach to bring some relief and to check for bacterial infection.
Step Two: They are supercharging him with IV fluids since dehydration can cause higher liver and kidney blood results. They still want to do a CT scan but the dye used can cause more damage to his liver, so they are waiting to see if they can hydrate him well and check out the bacterial infection first.
Step Three: Depending on how things go, they may also do a scope of his GI tract and a biopsy of any suspicious areas to check for GVHD.
Although the ER is a scary place for an immuno-compromised person especially, I am very grateful that Ian is being admitted back to UCSF. I have been really concerned about him as I've watched him going downhill, and now I know they see it and will pursue figuring out why. Please pray they find the right answers as soon as possible and Ian recovers his strength and health quickly.
Thank you so much for all your prayers and words of encouragement today. I felt lifted up in a big way! I think Ian is feeling it too, although he is still pretty out of order. We are so grateful for the chorus of support and prayers carrying us along!
Monday, March 11, 2013
Day 33: Flickering Flame
It's been rough. I can't lie, I can't pretend otherwise. I was really hoping for a light-hearted post about now, with lovely pictures of the girls next to Ian smiling his wonderful smile full of hope and faith. But that is not an accurate picture of where he is at right now...
It's been a rough road these past few weeks. We were expecting him to be gaining strength and getting back to his old self in no time, like he did after his first round of chemo, but this is a whole new ballgame. It is much more complicated and severe. This is no game. It is a roller coaster with twists and turns night and day, every day, and very few restful stretches that allow us to just relax and enjoy the scenery.
I miss my Ian. I feel like he hasn't really been back since his counts shot up after the transplant. He has been lost in a haze of medications, pain, low energy, discomfort, and nausea. He is unable to connect deeply or communicate much most of the time. That pulsing fire of life and hope and faith that was fighting the good fight has faded to a faint glow, a flickering flame. He just hasn't been himself.
Tomorrow is another clinic day. We may have more answers, or maybe just more questions. Yesterday they found his platelets even lower than ever and gave him two transfusions. He had a reaction to the last one and had to sit in the ER waiting room for hours until he felt stable enough to make the ride home. He and Uriah didn't get back until almost midnight, and I didn't sleep much that night even after hearing they made it home safely. It's hard not to worry, especially when there are so many questions with so few answers and my husband's life hangs in the balance. I know God holds the scale and calls the shots. I know He already has all the knowledge that the doctors are poking around for. I know these current shadows and shades of grey are an essential part of something beautiful in the making. I know we are being carried even when it feels like we're falling... but I still struggle with that storm in my stomach.
As for current details, he still has rashes, mysterious pain and bloating in his abdomen, and fevers that come and go. His CT scan isn't scheduled until next Monday, my birthday, so he is slugging along in the pain and discomfort trying to make self-observations and guesswork about what might be the issue. Just walking the stairs is difficult for him. It seems like he is getting weaker instead of stronger. They say it is probably too early for GVHD to present itself, which makes me even more nervous knowing that this could be the "calm" before the real storms hit. It is all a bit overwhelming.
And so I'm writing to share our situation and to ask for prayer. Please pray for Ian, that his spark of life and hope and faith will become a flame again. Please pray strength for him to fight this fight. Please pray for a smooth road ahead - that the rashes and mystery pains and fevers would subside, that his blood counts would stabilize, and that his energy levels would increase. Please pray wisdom and divine guidance for his medical team. Please pray for Uriah as he carries the bulk of responsibility for Ian's care. Please pray for me to take refuge in my Lord and lay all these burdens at his feet. And if you don't mind, please let us know you are thinking about us and praying. Comment, text, email, call... Ian especially is feeling lonely and needing some extra love right now.
Thank you!
It's been a rough road these past few weeks. We were expecting him to be gaining strength and getting back to his old self in no time, like he did after his first round of chemo, but this is a whole new ballgame. It is much more complicated and severe. This is no game. It is a roller coaster with twists and turns night and day, every day, and very few restful stretches that allow us to just relax and enjoy the scenery.
I miss my Ian. I feel like he hasn't really been back since his counts shot up after the transplant. He has been lost in a haze of medications, pain, low energy, discomfort, and nausea. He is unable to connect deeply or communicate much most of the time. That pulsing fire of life and hope and faith that was fighting the good fight has faded to a faint glow, a flickering flame. He just hasn't been himself.
Tomorrow is another clinic day. We may have more answers, or maybe just more questions. Yesterday they found his platelets even lower than ever and gave him two transfusions. He had a reaction to the last one and had to sit in the ER waiting room for hours until he felt stable enough to make the ride home. He and Uriah didn't get back until almost midnight, and I didn't sleep much that night even after hearing they made it home safely. It's hard not to worry, especially when there are so many questions with so few answers and my husband's life hangs in the balance. I know God holds the scale and calls the shots. I know He already has all the knowledge that the doctors are poking around for. I know these current shadows and shades of grey are an essential part of something beautiful in the making. I know we are being carried even when it feels like we're falling... but I still struggle with that storm in my stomach.
As for current details, he still has rashes, mysterious pain and bloating in his abdomen, and fevers that come and go. His CT scan isn't scheduled until next Monday, my birthday, so he is slugging along in the pain and discomfort trying to make self-observations and guesswork about what might be the issue. Just walking the stairs is difficult for him. It seems like he is getting weaker instead of stronger. They say it is probably too early for GVHD to present itself, which makes me even more nervous knowing that this could be the "calm" before the real storms hit. It is all a bit overwhelming.
And so I'm writing to share our situation and to ask for prayer. Please pray for Ian, that his spark of life and hope and faith will become a flame again. Please pray strength for him to fight this fight. Please pray for a smooth road ahead - that the rashes and mystery pains and fevers would subside, that his blood counts would stabilize, and that his energy levels would increase. Please pray wisdom and divine guidance for his medical team. Please pray for Uriah as he carries the bulk of responsibility for Ian's care. Please pray for me to take refuge in my Lord and lay all these burdens at his feet. And if you don't mind, please let us know you are thinking about us and praying. Comment, text, email, call... Ian especially is feeling lonely and needing some extra love right now.
Thank you!
Friday, March 8, 2013
Day 30: Clinic Day
Today is clinic day. It's Ian's only getaway outside the monastery other than his daily walk. Every Tuesday and Friday we head up to the bone marrow transplant clinic at UCSF for blood work, vitals, and check-in meetings with his NP and/or doctor. They closely monitor his blood counts, kidney function, and level of immuno-suppressant as well as check out any rashes or other questionable symptoms. Everyone in the waiting room wears a mask and has to use hand sanitizer before entering. It's a little piece of the world where everyone there is in a similar situation. Sometimes I want to ask each of the other patients and caretakers their story, but right now I'm too involved in my own...
Today was an extra long clinic day. We had a lot of issues to check out. Rashes continue to pop up, but right now they are thinking it is most likely due to dry skin. This can escalate if the skin becomes too irritated from being dry, triggering GVHD, so moisturizing is very important. I've found that getting this man to moisturize is no small task, however. I'm going to add lotion to the list of meds to check off daily on the white board...and have Uriah crack the whip!
Mouth sores and bleeding came back last night, and today's blood counts confirmed that his platelets have dipped down to almost nothing. He is getting a transfusion today, and will have to come in this Sunday for an extra blood draw to make sure his counts are at a safe level. They are thinking a weekend drug was the culprit and will stop it this weekend to see if his platelets return next week.
Ian has also been having a strange abdominal pain the past few days and had an ultrasound today to check that out. His gall bladder was "thickened" but nothing else seemed unusual, so they are ordering a CT scan early next week. They are also starting him on Pepcid in case it's an ulcer. He has been in quite a bit of pain from it tonight.
So today I'm sharing all the details, just to give you a window on where we are at and how to pray. Every day is different with new symptoms popping up, and sometimes old ones fading away. There are a lot of mystery symptoms that require a bit of time and strategic maneuvering to get to the bottom of, especially when there are so many potent medications involved.
It's been a long day. We always have a lot of good laughs at the clinic, but it also takes a lot of energy commuting there and back and bouncing around appointments here and there. My sweet parents watched the kids all day and put them to sleep without me since we didn't get back until after bedtime. I'm so thankful for them!
Speaking of which, my dad is going home to Oklahoma on Tuesday and my mom may leave soon, too. They need rest. They have poured out so much to serve and support us during this crazy time. I am forever grateful!
Today was an extra long clinic day. We had a lot of issues to check out. Rashes continue to pop up, but right now they are thinking it is most likely due to dry skin. This can escalate if the skin becomes too irritated from being dry, triggering GVHD, so moisturizing is very important. I've found that getting this man to moisturize is no small task, however. I'm going to add lotion to the list of meds to check off daily on the white board...and have Uriah crack the whip!
Mouth sores and bleeding came back last night, and today's blood counts confirmed that his platelets have dipped down to almost nothing. He is getting a transfusion today, and will have to come in this Sunday for an extra blood draw to make sure his counts are at a safe level. They are thinking a weekend drug was the culprit and will stop it this weekend to see if his platelets return next week.
Ian has also been having a strange abdominal pain the past few days and had an ultrasound today to check that out. His gall bladder was "thickened" but nothing else seemed unusual, so they are ordering a CT scan early next week. They are also starting him on Pepcid in case it's an ulcer. He has been in quite a bit of pain from it tonight.
So today I'm sharing all the details, just to give you a window on where we are at and how to pray. Every day is different with new symptoms popping up, and sometimes old ones fading away. There are a lot of mystery symptoms that require a bit of time and strategic maneuvering to get to the bottom of, especially when there are so many potent medications involved.
It's been a long day. We always have a lot of good laughs at the clinic, but it also takes a lot of energy commuting there and back and bouncing around appointments here and there. My sweet parents watched the kids all day and put them to sleep without me since we didn't get back until after bedtime. I'm so thankful for them!
Speaking of which, my dad is going home to Oklahoma on Tuesday and my mom may leave soon, too. They need rest. They have poured out so much to serve and support us during this crazy time. I am forever grateful!
Monday, March 4, 2013
Some snippets....
It's been busy, but we are starting to settle in and settle down. I'm spending less time at the monastery and more time with the kids, which is a necessary transition. Uriah and Ian are pretty self-sufficient now, with the exception of fresh bagels that I deliver almost daily from the Vietnamese bakery down our street. Ian is still suffering from nausea and low energy, but overall he is doing well.
I'm so thankful for the monastery. There is no way we could have juggled all this in our two bedroom home. Ian loves having the girls over, but it does take a toll on his already low store of energy. I try to bring them over once a day or so, but not stay for too long. Today I ran a bunch of errands before heading to Ian, and Fiona kept doing the "Abba" sign - it was as if she was anxiously asking when we would get there! The girls love it at the monastery, Asha especially. There is a hard wood floor downstairs that works perfectly as a dance floor, and all the more so when Uriah is playing live tunes on the guitar or banjo. Ian even broke out with a little swing dancing the other night!
There are lively moments, but honestly life at the monastery is pretty mellow right now. Ian sleeps a lot and does good to just take his shower and daily walk around the neighborhood. The clinic visits have been pleasantly uneventful, with all of his blood counts looking just fine. They say it could take a few more weeks at least for him to start feeling better, so we are waiting it out and praying the seas continue to remain calm.
Below are some pictures from Ian's first week at the monastery. He and Asha baked some peanut butter chocolate chip cookies together one of his first nights:
Here is Asha in front of our hutch/desk turned medicine cabinet:
I'm so thankful for the monastery. There is no way we could have juggled all this in our two bedroom home. Ian loves having the girls over, but it does take a toll on his already low store of energy. I try to bring them over once a day or so, but not stay for too long. Today I ran a bunch of errands before heading to Ian, and Fiona kept doing the "Abba" sign - it was as if she was anxiously asking when we would get there! The girls love it at the monastery, Asha especially. There is a hard wood floor downstairs that works perfectly as a dance floor, and all the more so when Uriah is playing live tunes on the guitar or banjo. Ian even broke out with a little swing dancing the other night!
There are lively moments, but honestly life at the monastery is pretty mellow right now. Ian sleeps a lot and does good to just take his shower and daily walk around the neighborhood. The clinic visits have been pleasantly uneventful, with all of his blood counts looking just fine. They say it could take a few more weeks at least for him to start feeling better, so we are waiting it out and praying the seas continue to remain calm.
Below are some pictures from Ian's first week at the monastery. He and Asha baked some peanut butter chocolate chip cookies together one of his first nights:
Ian and Fiona napping today... Had to snap a picture :)
Wednesday, February 27, 2013
Home Sweet Monastery
Yes, it's true... Ian is out of the hospital!
He was released Sunday evening, giving us just enough time to unpack his huge bag of medications and de-code the list of which ones to take when... Some only on weekends, some every three days, some only with fatty food and some on an empty stomach. 6am, 9am, noon, 2pm, 6pm, 9pm, 10pm. I was a bit overwhelmed with the extent of medications and detailed instructions for each one. Thankfully, our friend Tom had installed a mega-huge white board on the wall of Ian's room:
 |
| My Dad helping Tom install it a few days ago... |
******
Uriah, our first caregiver, arrived yesterday morning and I am ever so grateful for him. At first I thought I wanted a few days of Ian to myself, but as soon as we arrived at the monastery and the extent of his care schedule hit me I realized I needed help - ASAP!
It is hard to trust Ian in someone else's hands, but I can't trust him in my own either. I am human, and a rather frazzled one at that. I can only trust him in the hands of my Lord. And I know he is there. So I am slowly letting go, letting Uriah become the main caretaker so I can spend time with the kids and not have the weight of everything crushing down on me. I feel it all too often, like a huge boulder hanging over me threatening to smash my world to pieces if I forget something or make the wrong move. I have a little journal book of Scriptures that are life to me right now. There are a lot of verses about trust and refuge and making God my fortress. If my trust is in Him, then I won't be shaken by the ups and downs of blood counts or strange rashes or occasional fevers. My fears won't toss me to and fro in the storm if my eyes are on the Maker of the Universe who can calm the storm with a word. So please pray that I will take the time to stop and look at Him every day, again and again, because I know storms are bound to hit these next few months.
Thankfully, no big storms have hit so far. Ian is eating well and holding everything down. He even made his first attempt at homemade pasta yesterday! (He spent a lot of time in the hospital watching Italian cooking shows...) His first clinic visit was this morning and all of his blood work looks great. We were confused by his blood counts going up so fast and then crashing down to neutropenic, but after just one shot of the growth factor his counts shot right back up again. The doctor says this is good, it is the sign of a really good graft. So we are thankful for this! On the prayer front, he still has a pretty strong case of nausea and a painful rash from the chemotherapy. They are assuming it is not GVHD at this point, so that is another thing to be thankful for. His energy is low and it takes a good amount of prodding to get him to walk or take a shower, but hopefully once the nausea and rash subside his energy will increase and we won't have to get on his case as much!
I guess that is it for the update for tonight.
Thank you for your prayers - please keep them coming :)
Saturday, February 23, 2013
Day 17: Feeling the Love
It's been a long couple days, but I wanted to post an update real quick. I'm sitting at the monastery, happy to announce that it is now ready for Ian's homecoming! It has been a rocky road well watered with tears, I must admit, but around each bend there have been friends to care for me, pray for me, show me the flowers, and sometimes straight pick me up and carry me for a while. Furniture has been moved, a futon mattress with newly discovered mold was hauled away, a microwave and bagel toaster were delivered to my door along with yummy homemade chai, and a brand new futon mattress purchased for us as well as delivered and installed. Amazing! I'm still floored by how much love I've received in the past 24 hours...
And now for an update on Ian. He is feeling better! He still only holds down some of his food, but his clarity has returned and he is much more chipper. I'd even say some moments he's chatty - a far cry from a few days ago when he couldn't even answer a simple question! His counts have been going back down (which they say is common) so they have resumed the growth factor injections. He is borderline neutropenic today, but they seem confident to release him tomorrow morning. We were all set for him to come home tonight actually, but last minute they discovered the in-home training nurse wouldn't be able to come until Monday and they can't release us until the day before.
So I'm sitting here at the monastery, alone, taking a night away to rest. It is so peaceful here, especially now that all the preparations are complete. I am finally feeling ready, and I'm definitely feeling surrounded by Love.
Thank you for your prayers!
And now for an update on Ian. He is feeling better! He still only holds down some of his food, but his clarity has returned and he is much more chipper. I'd even say some moments he's chatty - a far cry from a few days ago when he couldn't even answer a simple question! His counts have been going back down (which they say is common) so they have resumed the growth factor injections. He is borderline neutropenic today, but they seem confident to release him tomorrow morning. We were all set for him to come home tonight actually, but last minute they discovered the in-home training nurse wouldn't be able to come until Monday and they can't release us until the day before.
So I'm sitting here at the monastery, alone, taking a night away to rest. It is so peaceful here, especially now that all the preparations are complete. I am finally feeling ready, and I'm definitely feeling surrounded by Love.
Thank you for your prayers!
Friday, February 22, 2013
Prayers, Please!
I'm sitting at the local car wash, waiting for our car to be professionally scrubbed inside and out. As I was about to load bed linens into our car this morning, I noticed all the sand and dust and ancient cracker crumbs that inevitably multiply in a family vehicle. All my alarms sounded. Alert!!! Yet another door for micro-organisms to invade!!!
This is a window into my life the past few days. Step by step, trying to get things in place and take action when the alarm sounds. I wish I had a few more weeks to prepare, but I have to trust the divine alarm system is guiding me and will cover any loose ends I miss. I have to trust. I have to, though sometimes it's hard...
Ian is still pretty miserable. He isn't eating. He isn't holding down the little bits he does eat. It is scary for me, because he was flying through this until his counts came up. They are still considering releasing him tonight, but we are hesitant about it. He is really not in a good place right now. They say it could be GVHD. They don't know. God knows. I have to trust. One day at a time.
I'm frazzled. I'm still wearing the same cloths as yesterday. My parents are over 70. My dad rarely feels well, with mystery fevers and burning skin. My mom is tiny, and she's losing an average of half a pound each day. It's a lot of activity chasing these girls. I'm worried about them. I'm also very busy trying to get the Monastery ready. There's a lot on our plate right now.
We could all use A LOT of prayers...
Thank you :)
This is a window into my life the past few days. Step by step, trying to get things in place and take action when the alarm sounds. I wish I had a few more weeks to prepare, but I have to trust the divine alarm system is guiding me and will cover any loose ends I miss. I have to trust. I have to, though sometimes it's hard...
Ian is still pretty miserable. He isn't eating. He isn't holding down the little bits he does eat. It is scary for me, because he was flying through this until his counts came up. They are still considering releasing him tonight, but we are hesitant about it. He is really not in a good place right now. They say it could be GVHD. They don't know. God knows. I have to trust. One day at a time.
I'm frazzled. I'm still wearing the same cloths as yesterday. My parents are over 70. My dad rarely feels well, with mystery fevers and burning skin. My mom is tiny, and she's losing an average of half a pound each day. It's a lot of activity chasing these girls. I'm worried about them. I'm also very busy trying to get the Monastery ready. There's a lot on our plate right now.
We could all use A LOT of prayers...
Thank you :)
Tuesday, February 19, 2013
Day 13: Blood Counts Rising!
It's confirmed, the graft has taken and Ian's blood counts are rising! His ANC (which is the one we've been watching most) went from .88 to 7.27 this morning...a hefty jump. Those new stem cells are taking their job seriously and we haven't seen any signs of GVHD (Graft Vs. Host Disease). It is looking like he will be out of here in just a few days, maybe Friday!
I realized recently that I haven't updated you on the issue of a caregiver for Ian. We are set - we've been blessed with not just one, but three perfect caregivers! This works out beautifully, especially considering the intensity of the isolated living situation. Each will take a month, more or less, so Ian will have some variety and the caregiver won't go stir crazy. Thank you for praying!
In the big picture, Ian is doing awesome. His blood counts and vitals are great, and his mouth sores are looking better too. Sitting by his bedside today, however, he is barely able to talk. He is transitioning away from pain meds right now and it is not so fun. He tried to quit cold turkey this morning, but that was so miserable that he decided to try backing out slowly. He is sleeping a lot and has hardly exercised today. For some reason it really effects his nausea levels, too. He hasn't eaten at all, even though he is no longer neutropenic and I'm happy to bring him anything that sounds even slightly appealing. This is the worst I've seen him yet, this round. Please pray this transition doesn't last too long and he will be able to get off the pain meds completely without further withdrawal symptoms.
I am doing much better, but still it is a struggle to keep all the balls in the air. I'd appreciate prayer for my parents as well, who are ever busy with our energetic, growing girls. Tomorrow I'm planning to take them out for an adventure in nature again and give my parents a break. Please pray we will all be refreshed and I get some sweet connecting time with the girls.
Thank you so much for praying and loving us through this!
I realized recently that I haven't updated you on the issue of a caregiver for Ian. We are set - we've been blessed with not just one, but three perfect caregivers! This works out beautifully, especially considering the intensity of the isolated living situation. Each will take a month, more or less, so Ian will have some variety and the caregiver won't go stir crazy. Thank you for praying!
In the big picture, Ian is doing awesome. His blood counts and vitals are great, and his mouth sores are looking better too. Sitting by his bedside today, however, he is barely able to talk. He is transitioning away from pain meds right now and it is not so fun. He tried to quit cold turkey this morning, but that was so miserable that he decided to try backing out slowly. He is sleeping a lot and has hardly exercised today. For some reason it really effects his nausea levels, too. He hasn't eaten at all, even though he is no longer neutropenic and I'm happy to bring him anything that sounds even slightly appealing. This is the worst I've seen him yet, this round. Please pray this transition doesn't last too long and he will be able to get off the pain meds completely without further withdrawal symptoms.
I am doing much better, but still it is a struggle to keep all the balls in the air. I'd appreciate prayer for my parents as well, who are ever busy with our energetic, growing girls. Tomorrow I'm planning to take them out for an adventure in nature again and give my parents a break. Please pray we will all be refreshed and I get some sweet connecting time with the girls.
Thank you so much for praying and loving us through this!
Monday, February 18, 2013
The Monastery
Preparations are currently under way as we set up Ian's temporary home, heretofore referred to as "the monastery." We are praying it will be a place of rest, healing, joy, connection, and spiritual growth. We don't know when he will be coming home, but they estimate sometime between the 21st and the 28th. I am feeling ready for a monastery myself.... To be honest, I'm pretty worn thin. I feel like tissue paper on a highway as I now juggle between home, UCSF and the monastery. All prayers appreciated! I was reminded by a dear sister this morning of the fact that I can't do this in my own strength. I need to rely on serious supernatural grace to carry me every single moment.
Today is Day 12. Ian is hanging in there. Fevers come and go. The mouth sores are getting worse in some areas, but starting to heal in others. I'll spare you the details, but it is a gruesome agony. His mouth doesn't look like a mouth any more and the oat meal must go down in slow, painful increments. He is trying to find a balance of pain management that doesn't compromise his mental clarity too much.
Hopefully his counts come back soon and then those mouth and throat sores will heal quickly. It looks like they are starting to come up already, but we will need to see the trend over time for full confirmation. I'll let you know. If so, that means the graft has successfully taken and he may be released this weekend!
Today is Day 12. Ian is hanging in there. Fevers come and go. The mouth sores are getting worse in some areas, but starting to heal in others. I'll spare you the details, but it is a gruesome agony. His mouth doesn't look like a mouth any more and the oat meal must go down in slow, painful increments. He is trying to find a balance of pain management that doesn't compromise his mental clarity too much.
Hopefully his counts come back soon and then those mouth and throat sores will heal quickly. It looks like they are starting to come up already, but we will need to see the trend over time for full confirmation. I'll let you know. If so, that means the graft has successfully taken and he may be released this weekend!
I'll keep you updated...
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