EK here again. Overall Sareana is doing pretty decent under the circumstances. We're about 3 and 1/2 days out from surgery and the flap appears to be working properly, so that's definitely good news.
As I mentioned in the previous post, this was a bigger surgery than anything she's been through before, so she still has a long ways to go. She's on a couple of heavy antibiotics for infections they found during the surgery, and a had a PICC line installed yesterday for antibiotic delivery. They also found that she has an infection in her digestive system, apparently a result of all the antibiotics she's been taking for the past several months upsetting the balance of good/bad bacteria in the stomach. However, they think they have a solution to that in the form of yet another antibiotic for the next 5 days. This antibiotic can be pretty rough on organs, so it's good that she's in ICU where they can keep a close eye on her for this as well as surgery recovery. The bottom line is we really need to get her digestive system working as soon as possible so she can start getting some good nutrition and hopefully getting her strength back. Meanwhile she's getting nutrition via IVs etc and eating a little bit as she's able.
ICUs are not a relaxing place to be, and I think she's pretty tired from lack of sleep as well as just being really beat up from surgery, medications, etc. But, it's the place for her to be right now. Not sure how long she's gonna be down in Nashville, but it may be longer than we originally anticipated while they work to get her squared away. The team of docs at Vanderbilt really seems to be bending over backward to make sure she's getting the best care possible and that everyone is communicating with everyone else to make sure all the pieces of the puzzle are being addressed. Having her Uncle Wright close by is hugely helpful, and we think it's very clear that going to Vanderbilt was the right call, despite the fact that she's a long way from home. Sareana's mom is down there with her right now, and her dad will be coming back soon. It's really tough being with someone you love in an ICU unit with all the frustrations and interruptions and just seeing your loved one in that condition, and it's a difficult balance trying to be helpful and useful and at the same time stay out of the way when necessary. They are really doing a tremendous job, and I'm so glad they are there with Sareana.
Despite everything, Sareana is doing pretty well. She's miserable (understatement), but she's really surprisingly upbeat and positive. Of course, for anybody who knows Sareana, maybe that's not surprising. She's tough as always.
Life is busy around here with the boys. Everything's going well but we all miss Sareana quite a bit. I'm hoping to get down to Nashville next week for a few days.
That's it for now. Best,
EK
Saturday, October 28, 2017
Wednesday, October 25, 2017
Surgery
EK here. It was a long surgery yesterday, but they accomplished what they wanted to, which was to get the "free flap" in place and hooked up to good blood supply. (Lex and Ebby are with her in Nashville right now, I'm in Portland with the boys.)
Surgery started yesterday around 1030 a.m. and ended after midnight; around 14 hours. Sareana is pretty beat up, but they say she is doing as well as can be expected at this point after such a procedure. She's still pretty groggy and hooked up to a lot of tubes for the usual stuff: hydration/nutrition, painkillers, antibiotic, drainage, etc. It was in many ways a more involved and invasive procedure than anything she's had done prior, so the recovery period will take longer.
The first part of the procedure was done by neurosurgery, who removed all existing hardware (mesh, screws, etc), glue, and some dead bone. This all went smoothly. They found evidence of infection and fungus, which was all removed and cleaned out, and which has been sent to Infectious Diseases for identification and will then be specifically targeted with antibiotics. Unlike previous surgeries, they removed everything foreign without replacing it; she'll have a little "soft spot" in her skull, which is apparently not a big deal. More importantly, removing anything foreign gives a much improved chance of successfully getting rid of infection. I am hopeful that the existence of infection was responsible for at least some of her symptoms, and that it's removal will help her feel a bit better in some regards.
The next part of the procedure was done by plastic surgery, who took a "flap" from her thigh and then incorporated it into the back of her head to fully close the wound. This was met with some difficulty, which is why the surgery took so long. Part of the procedure involves hooking up an artery and veins in this flap to an existing artery and veins in her head. I'm told the artery is about the size of the tip of a pen, and the smallest veins they hook up are almost thread-sized. They join them and then suture them together. All this is understandably time-consuming. The veins were fine, but the artery was a problem. The artery they originally hooked up to is in the neck, and each time they hooked it up, it would clot and they'd have to redo it. After several tries (and many hours), they went to Plan B, which was to hook up to an artery that runs just in front of the ear. In order to do this, they needed more tubing (ie vein/artery), so they had to go back to her leg, which was at this point already sewn up, and reopen to get more material. Eventually, they successfully hooked up to this other artery and were then able to finish the procedure.
The tricky part is making sure that the blood supply continues to flow properly through these new hook-ups, and they are watching very closely for any signs of clogging or clotting over the next few days. Every hour that goes by without any problems is good, and improves the chances that it will keep working, until after 3 or 4 days, if all still looks good, they'll be confident that it "took". In the meantime, if it quits working or clots, they will need to immediately take Sareana back to the Operating Room and try to get it going again. So, we're not out of the woods yet, and are keeping our fingers crossed that this thing keeps working.
That's it for now, I will do my best to keep you updated if anything changes. In any case, I'll try to post something this weekend with a progress report. Thanks for all your prayers and good vibes, they're always appreciated.
EK
Surgery started yesterday around 1030 a.m. and ended after midnight; around 14 hours. Sareana is pretty beat up, but they say she is doing as well as can be expected at this point after such a procedure. She's still pretty groggy and hooked up to a lot of tubes for the usual stuff: hydration/nutrition, painkillers, antibiotic, drainage, etc. It was in many ways a more involved and invasive procedure than anything she's had done prior, so the recovery period will take longer.
The first part of the procedure was done by neurosurgery, who removed all existing hardware (mesh, screws, etc), glue, and some dead bone. This all went smoothly. They found evidence of infection and fungus, which was all removed and cleaned out, and which has been sent to Infectious Diseases for identification and will then be specifically targeted with antibiotics. Unlike previous surgeries, they removed everything foreign without replacing it; she'll have a little "soft spot" in her skull, which is apparently not a big deal. More importantly, removing anything foreign gives a much improved chance of successfully getting rid of infection. I am hopeful that the existence of infection was responsible for at least some of her symptoms, and that it's removal will help her feel a bit better in some regards.
The next part of the procedure was done by plastic surgery, who took a "flap" from her thigh and then incorporated it into the back of her head to fully close the wound. This was met with some difficulty, which is why the surgery took so long. Part of the procedure involves hooking up an artery and veins in this flap to an existing artery and veins in her head. I'm told the artery is about the size of the tip of a pen, and the smallest veins they hook up are almost thread-sized. They join them and then suture them together. All this is understandably time-consuming. The veins were fine, but the artery was a problem. The artery they originally hooked up to is in the neck, and each time they hooked it up, it would clot and they'd have to redo it. After several tries (and many hours), they went to Plan B, which was to hook up to an artery that runs just in front of the ear. In order to do this, they needed more tubing (ie vein/artery), so they had to go back to her leg, which was at this point already sewn up, and reopen to get more material. Eventually, they successfully hooked up to this other artery and were then able to finish the procedure.
The tricky part is making sure that the blood supply continues to flow properly through these new hook-ups, and they are watching very closely for any signs of clogging or clotting over the next few days. Every hour that goes by without any problems is good, and improves the chances that it will keep working, until after 3 or 4 days, if all still looks good, they'll be confident that it "took". In the meantime, if it quits working or clots, they will need to immediately take Sareana back to the Operating Room and try to get it going again. So, we're not out of the woods yet, and are keeping our fingers crossed that this thing keeps working.
That's it for now, I will do my best to keep you updated if anything changes. In any case, I'll try to post something this weekend with a progress report. Thanks for all your prayers and good vibes, they're always appreciated.
EK
Tuesday, October 24, 2017
Free Flap 10-24-17
Dear Friends and Family,
Oregon is a beautiful place to live year-round, but Autumn in particular brings about a change in color that is quite stunning. And it’s not just shades of green, orange, and red; certain flowers fade and others bloom. Portlanders can grow and harvest throughout the seasons. Pumpkin growing contests between neighbors is the real deal here. Erin, the boys and I recently took advantage of a long weekend and the mild weather to visit a town about one hour from Portland called McMinnville. McMinnville is smack dab in the middle of wine country. They have an aviation museum with Howard Hughes’ Spruce Goose (the largest airplane ever built), as well as a Wave and Waterpark which has slides literally coming out of the fuselage of an old 747 airline that sits on the roof of the building! It’s quite a site to see and dreamland for my boys, who are turning out to be major aviation enthusiasts—like father, like son(s)! Alex and Dean attend the same elementary school as my sister's kids and so far, so good in Kindergarten and Fourth grade.
Since my last post in August there’s a lot to report regarding my health. The surgery I had in Portland which was meant to close my wound went well, and shortly after surgery I began a 7 week round of IV antibiotics. In order for antibiotics to be delivered intravenously doctors had to insert a PICC line (similar to a PORT) on the inside of my upper left arm. At first, I was self-administering 1.5 hours of antibiotics 2x/daily at home. This was super time-consuming and cumbersome as I had to carry around an IV pole wherever I went while receiving the drugs. Thankfully, after about a week of that the doctor changed me to a different IV antibiotic that only took five minutes a day and I could administer through a syringe—I was happy to see the pole go back in the box. I tolerated the second antibiotic better than the first, but seven weeks was still a long time to be on strong antibiotics. Everything was running smoothly until…
About one month after my early August surgery I had my stitches removed. Not a day later it was apparent that my wound had not sealed. Unfortunately, surgery didn’t work! So…we scheduled a second surgery on September 20 (again in Portland) called a rotational flap. This out-patient surgery took healthy tissue from the base of the back of my neck and rotated it over the open wound. Sounds a bit freaky, but it’s not an uncommon procedure for plastic surgeons to use for wound healing purposes. If there’s an interest, a more detailed explanation of a “rotational flap” can be found on the internet. Afterwards, I was put on oral antibiotics and crossed my fingers that after they took out the stitches in four weeks that my wound would be healed. Frustratingly, that was not the case. Much to my dismay, this procedure didn’t work either plus the added downside is the antibiotics made me feel really lousy: weight loss, low energy, dizziness, major gut discomfort. To be fair, I’m not positive that the culprit behind my malaise is the antibiotics, it’s more likely due to the fact that my head has a hole in it!
My third date with a surgeon in as many months now lurks on the horizon to once and for all get this wound healed. This time I'm in Nashville, TN with my dad at Vanderbilt University Medical Center. Under my uncle's watchful eye, I'm getting red carpet treatment--medically speaking. Keep in mind it’s been months since I’ve been able to do any kind of cancer treatment due to the open wound. So, the sooner this thing heals, the better. On Tuesday, October 24 I will have a “free flap” procedure which is much more involved than the other two and requires several days of close monitoring in ICU after the surgery due to risk of a blood clot. Instead of taking healthy tissue near the wound and 'rotating' it over the wound, they will cut a long piece of healthy artery and 'free' skin from another body part entirely: my thigh. This longer strip of healthy tissue will be connected from good blood supply in my neck to good supply in the back of my head. It will not look pretty, but that’s the least of my concerns—I need to get this wound closed!!! I am told that the piece of overlapping skin that will be visible on my neck can be removed after a few months of healing. My thigh incision should heal “normally” and I’ll have a scar there. The new skin on the back of my head will remain.
This complicated procedure is done by a team of doctors over 5-6 hours. The neurosurgeon will go in and take out all the “hardware” (i.e. mesh and metal plates), whereas the plastic surgeon(s) are responsible for the actual free flap. The foreign hardware will not be replaced this time so ideally there’s zero risk of bacterial infection. Essentially once my wound is healed I should have a soft spot on the back of my head, which is just fine.
I am beyond frustrated that I have had to endure so many procedures the past few months, which have not healed this stubborn wound and contributed to a decline in my health. I’m hopeful this third approach will work and I’ll be feeling better both physically and mentally soon!
As always, thank you for your support and well wishes. If you're wondering about my support system here in Nashville, well, my dad is here now, my mom is coming in tomorrow, my uncle and my good friend, Holly, live here so I'm all good on that front. As much as Erin wishes he could be in two places at once, it's really best if he keeps our boys' routine as regular as possible.
Love,
Sareana
Oregon is a beautiful place to live year-round, but Autumn in particular brings about a change in color that is quite stunning. And it’s not just shades of green, orange, and red; certain flowers fade and others bloom. Portlanders can grow and harvest throughout the seasons. Pumpkin growing contests between neighbors is the real deal here. Erin, the boys and I recently took advantage of a long weekend and the mild weather to visit a town about one hour from Portland called McMinnville. McMinnville is smack dab in the middle of wine country. They have an aviation museum with Howard Hughes’ Spruce Goose (the largest airplane ever built), as well as a Wave and Waterpark which has slides literally coming out of the fuselage of an old 747 airline that sits on the roof of the building! It’s quite a site to see and dreamland for my boys, who are turning out to be major aviation enthusiasts—like father, like son(s)! Alex and Dean attend the same elementary school as my sister's kids and so far, so good in Kindergarten and Fourth grade.
Since my last post in August there’s a lot to report regarding my health. The surgery I had in Portland which was meant to close my wound went well, and shortly after surgery I began a 7 week round of IV antibiotics. In order for antibiotics to be delivered intravenously doctors had to insert a PICC line (similar to a PORT) on the inside of my upper left arm. At first, I was self-administering 1.5 hours of antibiotics 2x/daily at home. This was super time-consuming and cumbersome as I had to carry around an IV pole wherever I went while receiving the drugs. Thankfully, after about a week of that the doctor changed me to a different IV antibiotic that only took five minutes a day and I could administer through a syringe—I was happy to see the pole go back in the box. I tolerated the second antibiotic better than the first, but seven weeks was still a long time to be on strong antibiotics. Everything was running smoothly until…
About one month after my early August surgery I had my stitches removed. Not a day later it was apparent that my wound had not sealed. Unfortunately, surgery didn’t work! So…we scheduled a second surgery on September 20 (again in Portland) called a rotational flap. This out-patient surgery took healthy tissue from the base of the back of my neck and rotated it over the open wound. Sounds a bit freaky, but it’s not an uncommon procedure for plastic surgeons to use for wound healing purposes. If there’s an interest, a more detailed explanation of a “rotational flap” can be found on the internet. Afterwards, I was put on oral antibiotics and crossed my fingers that after they took out the stitches in four weeks that my wound would be healed. Frustratingly, that was not the case. Much to my dismay, this procedure didn’t work either plus the added downside is the antibiotics made me feel really lousy: weight loss, low energy, dizziness, major gut discomfort. To be fair, I’m not positive that the culprit behind my malaise is the antibiotics, it’s more likely due to the fact that my head has a hole in it!
My third date with a surgeon in as many months now lurks on the horizon to once and for all get this wound healed. This time I'm in Nashville, TN with my dad at Vanderbilt University Medical Center. Under my uncle's watchful eye, I'm getting red carpet treatment--medically speaking. Keep in mind it’s been months since I’ve been able to do any kind of cancer treatment due to the open wound. So, the sooner this thing heals, the better. On Tuesday, October 24 I will have a “free flap” procedure which is much more involved than the other two and requires several days of close monitoring in ICU after the surgery due to risk of a blood clot. Instead of taking healthy tissue near the wound and 'rotating' it over the wound, they will cut a long piece of healthy artery and 'free' skin from another body part entirely: my thigh. This longer strip of healthy tissue will be connected from good blood supply in my neck to good supply in the back of my head. It will not look pretty, but that’s the least of my concerns—I need to get this wound closed!!! I am told that the piece of overlapping skin that will be visible on my neck can be removed after a few months of healing. My thigh incision should heal “normally” and I’ll have a scar there. The new skin on the back of my head will remain.
This complicated procedure is done by a team of doctors over 5-6 hours. The neurosurgeon will go in and take out all the “hardware” (i.e. mesh and metal plates), whereas the plastic surgeon(s) are responsible for the actual free flap. The foreign hardware will not be replaced this time so ideally there’s zero risk of bacterial infection. Essentially once my wound is healed I should have a soft spot on the back of my head, which is just fine.
I am beyond frustrated that I have had to endure so many procedures the past few months, which have not healed this stubborn wound and contributed to a decline in my health. I’m hopeful this third approach will work and I’ll be feeling better both physically and mentally soon!
As always, thank you for your support and well wishes. If you're wondering about my support system here in Nashville, well, my dad is here now, my mom is coming in tomorrow, my uncle and my good friend, Holly, live here so I'm all good on that front. As much as Erin wishes he could be in two places at once, it's really best if he keeps our boys' routine as regular as possible.
Love,
Sareana
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