So, we're still in the intensive care unit. We were supposed to get the chest tubes out and leave ICU on saturday to go to a regular room. It might happen today, but they aren't really sure yet.
Apparently, when the doctor went into her chest, he found a lot more than he bargained for. The main tumor was about 8cm around, and had apparently been growing on her spinal area for many years, and just kicked into overdrive the last few. There is a large vessel that supplies between the arms and is the main source of the left emptying and apparently supplying the right. Over the years, secondary vessels have grown into place because that main vessel was completely inside the tumor. As the tumor grew, it compressed the vessel until she only had a pencil point opening. She never could hold her arms above her head for more than a minute but never gave that a second thought. She had terrible arm pain for the last 2 years (that was diagnosed incorrectly as cubital tunnel syndrome) that was miraculously cured for a few months early this year and again about 3 months ago when she was sick and got antibiotics. It baffled all the doctors involved as to why nerve pain would be affected by antibiotics, since the tumor wasn't near the nerve bunch for the shoulder. But now we know. The teratoma was infected when they took it out. Apparently, when it would get really bad, that tumor would swell around the vessel and clamp it down further. There was no way to safely remove the vessel from the tumor, and because the secondary support was in place, the doctor chose to remove it. As a result, Claire's left arm is terribly swollen (twice normal size) and her hand and fingers were swollen so much that the skin was super stretched, looking at least twice as big as normal. Her right shoulder (the source of all the pain before the surgery when the tumor was infected) has been hurting her pretty badly since the op. This morning, her fingers finally are starting to look normal, but there is still a lot of swelling in her arm. Dr. Smith said she'll probably need some therapy with her left arm.
There was a second tumor in her thymus gland. Apparently it was about the size of an egg. Both were removed and initial results from pathology indicate they are benign.
Because they've had to treat her for an OD of morphine (they discovered she's apparently allergic to it), she's been given a lower acting dug. The morphine caused her to be put back on the respirator once (they thought it was actually sedative related at the time) and then later when they moved her onto morphine from something else, she fell asleep and stopped breathing. They gave her Narcan to counteract the Morphine at that point realized that she can't tolerate the morphine. The pain relief now isn't really isn't touching her pain when she moves, coughs, or takes a deep breath. That is making it excruciating for her to try and do breathing exercises and walk around, so we're way behind schedule on chest tube removal. We're also at really high risk for a bad case of pneumonia still. Once the chest tubes come out, her pain will decrease, but it's a catch 22. Until the pain abates a little, she really is under-functioning right now. They are continuing antibiotics to try to prevent sepsis (from the infected tumor) and pneumonia.
They have her off the saline now, and her blood pressure is somewhat normalized finally, so now we'll have to see how she does trying to eat and drink on her own.
They are being wonderful and letting Kiddo and I stay around the clock in the ICU. I'm sure the fact that we're both trained as first responders helps our case, but it's also critical for panic control for Claire, who is still very afraid to sleep now. As I write this, she's sleeping lightly beside me. They are about to sit her up and see if she can get the tubes out in about 10 minutes.
Annie
Monday, November 10, 2008
Sunday, November 9, 2008
Coming to you live from the ICU...
Claire is responding well to the neosynephrine to raise her blood pressure and is tolerating the demerol nicely. Although she's not getting the amount of pain relief she would with morphine, she is breathing on her own, and she's pretty sure that's a good thing.
They got her out of bed and made her sit up for 45 minutes, and had her breathing using a little machine that measures inhalations. Being the tenacious Brit that she is, she has the staff trained already to try to give ME the jobs that result in her griping. Current count of nurses called mean, sadistic or "just not nice" now up to 4. She's hitting the 500 mark on the breathing machine, and she should be doing 1000-1500 if fully healthy. It's not bad, but she definitely is behind the curve a bit due to the two lost days. She states simply that she's "never really been one for sports, and I'm sure MODERN hospitals have a computer that can do this for me..."
Although the "reclining" chair kept trying to (quite noisily) eat me all night, and they have the room at sub-arctic standards, it helped her a lot knowing she had someone here, and wasn't afraid to try to go to sleep. She did sleep in short spurts, and I think I got a whopping 2 hours of sleep. I did get to smuggle cookies in yesterday evening and hoard them, which turned out to be a good thing at 2am when there was no hospital food to snitch from the unsuspecting patient. In an attempt to not trigger the chair's hunger, I learned just how small of a ball I can curl up in to sleep.
Hopes are high that our superwoman will be able to have her chest tubes removed today. Informed sources state that she should find her pain decreased by 30%-50% once that is accomplished.
They got her out of bed and made her sit up for 45 minutes, and had her breathing using a little machine that measures inhalations. Being the tenacious Brit that she is, she has the staff trained already to try to give ME the jobs that result in her griping. Current count of nurses called mean, sadistic or "just not nice" now up to 4. She's hitting the 500 mark on the breathing machine, and she should be doing 1000-1500 if fully healthy. It's not bad, but she definitely is behind the curve a bit due to the two lost days. She states simply that she's "never really been one for sports, and I'm sure MODERN hospitals have a computer that can do this for me..."
Although the "reclining" chair kept trying to (quite noisily) eat me all night, and they have the room at sub-arctic standards, it helped her a lot knowing she had someone here, and wasn't afraid to try to go to sleep. She did sleep in short spurts, and I think I got a whopping 2 hours of sleep. I did get to smuggle cookies in yesterday evening and hoard them, which turned out to be a good thing at 2am when there was no hospital food to snitch from the unsuspecting patient. In an attempt to not trigger the chair's hunger, I learned just how small of a ball I can curl up in to sleep.
Hopes are high that our superwoman will be able to have her chest tubes removed today. Informed sources state that she should find her pain decreased by 30%-50% once that is accomplished.
2:15 am sunday, update
Hi all, posting from the ICU. Thanks for all the prayers and thoughts. I'm in a calmer place now.
They allowed me to spend the night in the ICU to act as Claire's anti-anxiety med. Kiddo is at home, snuggling with puppies and resting.
Claire was finally given the clear to test demerol in her system at 12:30 this morning. blood pressure is now stable in the 92/45 - 99/49 range, and she is finally getting some sleep. She was terrified to let herself fall asleep because she's now afraid she'll stop breathing. If this doesn't get her over her gigantic medical phobia, I don't know what will. Talk about facing down some serious damn demons.
So, she's been on nothing but Tylenol for about 8 hours, and it was really taking its toll. It also meant that trying to get her to stand and walk has been impossible. The plan is to give her more demerol later his morning and attempt just that.
She has pneumonia starting in both lungs. Not totally unexpected. However, I was told that the teratoma the doc removed was very infected, and she's at very high risk for sepsis. They are treating her with broad spectrum antibiotics to try to counter both. Her shoulder is in terrible pain, where we think the teratoma was interfering with nerves in her arm before. The resection turned out to be a lot worse on her than imagined.
Thank god she went through with it.
Looks like we're probably looking at another full day in the ICU. Claire has had little moments of letting her humor surface, like when she looked at Kiddo today and said "Nope. I don't think I'm escaping on Monday." Not much, but for a girl that is stark raving terrified of the hospital and hasn't had any anti-anxiety meds, I'm pretty pleased.
I've been watching her breathe for 2 hours straight and I'm running out of steam. Going to curl up in a little ball in this chair beside the bed and try to nap.
Thank again everyone. Much love to you.
Annie
They allowed me to spend the night in the ICU to act as Claire's anti-anxiety med. Kiddo is at home, snuggling with puppies and resting.
Claire was finally given the clear to test demerol in her system at 12:30 this morning. blood pressure is now stable in the 92/45 - 99/49 range, and she is finally getting some sleep. She was terrified to let herself fall asleep because she's now afraid she'll stop breathing. If this doesn't get her over her gigantic medical phobia, I don't know what will. Talk about facing down some serious damn demons.
So, she's been on nothing but Tylenol for about 8 hours, and it was really taking its toll. It also meant that trying to get her to stand and walk has been impossible. The plan is to give her more demerol later his morning and attempt just that.
She has pneumonia starting in both lungs. Not totally unexpected. However, I was told that the teratoma the doc removed was very infected, and she's at very high risk for sepsis. They are treating her with broad spectrum antibiotics to try to counter both. Her shoulder is in terrible pain, where we think the teratoma was interfering with nerves in her arm before. The resection turned out to be a lot worse on her than imagined.
Thank god she went through with it.
Looks like we're probably looking at another full day in the ICU. Claire has had little moments of letting her humor surface, like when she looked at Kiddo today and said "Nope. I don't think I'm escaping on Monday." Not much, but for a girl that is stark raving terrified of the hospital and hasn't had any anti-anxiety meds, I'm pretty pleased.
I've been watching her breathe for 2 hours straight and I'm running out of steam. Going to curl up in a little ball in this chair beside the bed and try to nap.
Thank again everyone. Much love to you.
Annie
Saturday, November 8, 2008
Scare of a lifetime
On the way home from hospital to take care of dogs. Kiddo was still at the hospital in waiting room. 8 miles out, phone rings, it's kiddo.
"Mom, you need to get back here."
"Is something wrong?"
"Yes, mum just CODED"
Cue hyperventilation. Cue manic exit off highway and reentry, driving code 3 minus the fire truck. Get back to the hospital, run in the door, up to the 2nd floor, find out that she had apparently OD'd on morphine, because her blood pressure was low and she had an unknown sensitivity to morphine. So she went to sleep and stopped breathing.
They caught her fast, bagged her and brought her back up. My daughter, the paramedic, was distraught. Apparently the priest on duty decided that rather than telling kiddo what actually happened, he decided to tell her that she "coded, and I don't know anything else, so please wait nearby and I'll be back".
Then they take Kiddo back to see that her mum is fine, but kick her right back out of the ICU while they work on her, while Claire gives her a scared "where are you going??" look.
Kiddo loses it. Runs to the bathroom and throws up. Meanwhile, I've been let into the ICU and am with Claire, but I can't get Kiddo back in and can't leave. So Kiddo is out there sobbing until I can break free enough to at least text her from the ICU that mum is ok. For an hour I send her text messages of what's happening until my phone dies. Then I tell the nurse that I have to go take care of the animals and can Kiddo take my place? Of course, they answer. No problem.
So now, with a BP of 81/40 or so, them unable to reintroduce IV painkillers (Claire has every rib cut open with just Tylenol now) they make the call to transfuse to raise her pressure. Apparently, according to Kiddo's message from the ICU, they're giving her packed cells.
I'm on my way back to the hospital, now that dogs have had food, water, and relief.
During the surgery, by the way, apparently they discovered that the tumor had invaded a large vein or the vena cava (I don't have all the details) and that vascular repair had to be done. She may need some rehab to help her arm after this surgery as well.
It's getting a little rough right now. Is it okay to admit I'm scared?
Annie
"Mom, you need to get back here."
"Is something wrong?"
"Yes, mum just CODED"
Cue hyperventilation. Cue manic exit off highway and reentry, driving code 3 minus the fire truck. Get back to the hospital, run in the door, up to the 2nd floor, find out that she had apparently OD'd on morphine, because her blood pressure was low and she had an unknown sensitivity to morphine. So she went to sleep and stopped breathing.
They caught her fast, bagged her and brought her back up. My daughter, the paramedic, was distraught. Apparently the priest on duty decided that rather than telling kiddo what actually happened, he decided to tell her that she "coded, and I don't know anything else, so please wait nearby and I'll be back".
Then they take Kiddo back to see that her mum is fine, but kick her right back out of the ICU while they work on her, while Claire gives her a scared "where are you going??" look.
Kiddo loses it. Runs to the bathroom and throws up. Meanwhile, I've been let into the ICU and am with Claire, but I can't get Kiddo back in and can't leave. So Kiddo is out there sobbing until I can break free enough to at least text her from the ICU that mum is ok. For an hour I send her text messages of what's happening until my phone dies. Then I tell the nurse that I have to go take care of the animals and can Kiddo take my place? Of course, they answer. No problem.
So now, with a BP of 81/40 or so, them unable to reintroduce IV painkillers (Claire has every rib cut open with just Tylenol now) they make the call to transfuse to raise her pressure. Apparently, according to Kiddo's message from the ICU, they're giving her packed cells.
I'm on my way back to the hospital, now that dogs have had food, water, and relief.
During the surgery, by the way, apparently they discovered that the tumor had invaded a large vein or the vena cava (I don't have all the details) and that vascular repair had to be done. She may need some rehab to help her arm after this surgery as well.
It's getting a little rough right now. Is it okay to admit I'm scared?
Annie
The tube is out.
She's off the respirator. However, she's in a LOT of pain, since they made her cough deeply. Her surgeon was just in there checking on her.
More later.
Annie
More later.
Annie
Saturday morning
She's awake this morning, although she obviously can't talk with a breathing tube in. So she was finger spelling to me and kiddo, asking questions. Those big beautiful hazel brown eyes were all the way open a few times, which was a huge relief.
They're taking the tube out in a few minutes, and since it's a HUGE fear factor for her, they're letting kiddo (the combat medic/paramedic) into the ICU to hold her hand and assist. That will be a huge help. Have I mentioned this hospital is wonderful yet?
We said goodbye to Joanna this morning, the wonderful nurse that made sure that Claire was clean shaven today (no makeup allowed, but you know, it's the little things that count). The hospital has little cards that you can fill out for wonderful employees you encounter, and I've filled out two already.
One of the two, a nurse named Kevin, was discussing with Joanna how hard it must be to be this phobic of hospitals when you're trans (and thus eventually needing/wanting final surgery). It was a nice conversation with Joanna, telling her that with a lot of people, surgery just isn't even an option, and that the living full time in the right gender is the most crucial part. It made perfect sense to her.
There have been a few slipups with the he/she pronouns, but that's to be expected when presented with beard shadow and checking on catheters, etc. They usually catch themselves and correct themselves, which is really sweet. They have been all so very kind and respectful here. Even the chaplain, when she came in to see me, used the right pronouns.
Hopefully Claire has turned the corner and will be allowed out of the ICU today. We'd like to get to the point that we can start our shifts, being with her around the clock.
Annie
They're taking the tube out in a few minutes, and since it's a HUGE fear factor for her, they're letting kiddo (the combat medic/paramedic) into the ICU to hold her hand and assist. That will be a huge help. Have I mentioned this hospital is wonderful yet?
We said goodbye to Joanna this morning, the wonderful nurse that made sure that Claire was clean shaven today (no makeup allowed, but you know, it's the little things that count). The hospital has little cards that you can fill out for wonderful employees you encounter, and I've filled out two already.
One of the two, a nurse named Kevin, was discussing with Joanna how hard it must be to be this phobic of hospitals when you're trans (and thus eventually needing/wanting final surgery). It was a nice conversation with Joanna, telling her that with a lot of people, surgery just isn't even an option, and that the living full time in the right gender is the most crucial part. It made perfect sense to her.
There have been a few slipups with the he/she pronouns, but that's to be expected when presented with beard shadow and checking on catheters, etc. They usually catch themselves and correct themselves, which is really sweet. They have been all so very kind and respectful here. Even the chaplain, when she came in to see me, used the right pronouns.
Hopefully Claire has turned the corner and will be allowed out of the ICU today. We'd like to get to the point that we can start our shifts, being with her around the clock.
Annie
Friday, November 7, 2008
Update
Surgery went well, but we ran into a snag in recovery. They had trouble getting her to shake off the anesthesia, and after trying Narcan to drop the pain meds off of her and trying everything else (including using a bag to make her breath) they gave in at 5pm and reintubated her, because her blood oxygen levels were worrying low. They went ahead and sedated her and will keep her sedated until tomorrow morning when they will try again.
On a positive note, as many of you know, Claire wasn't able to finish laser before all of this hit, and of course she's stuck now in a hospital with beard shadow. The night ICU nurse was talking to us and asked if it would make claire more comfortable if she shaved it off tonight to make it less visible tomorrow. How's that for just mind-blowing kindness in a hospital?
Well, I'm off to clean up dishes, exercise dogs and collapse for a few hours. Kiddo is sleeping in the ICU waiting room overnight and they plan to have her in the ICU helping when the take the breathing tube out, since it's one of Claire's biggest fears and she'll HAVE to be awake this time.
Love to you all,
Annie
On a positive note, as many of you know, Claire wasn't able to finish laser before all of this hit, and of course she's stuck now in a hospital with beard shadow. The night ICU nurse was talking to us and asked if it would make claire more comfortable if she shaved it off tonight to make it less visible tomorrow. How's that for just mind-blowing kindness in a hospital?
Well, I'm off to clean up dishes, exercise dogs and collapse for a few hours. Kiddo is sleeping in the ICU waiting room overnight and they plan to have her in the ICU helping when the take the breathing tube out, since it's one of Claire's biggest fears and she'll HAVE to be awake this time.
Love to you all,
Annie
Claire is in surgery
For those of you following, Claire started her surgery to remove that damn 8cm tumor in her chest at at 8:05 eastern. I drove home to let dogs out, and cried the entire 25 minute drive here.
I know why they call it "ripping your heart out" because it felt like a rubber cord was attached to mine, and the further I drove, the deeper the pain was. I'm so terrified. This tumor was discovered in February, and we don't know for sure if its benign or malignant. I'm praying that it will be nothing more than a huge, benign tumor and this will be the end of it.
I'll update when she is out of surgery. Thank you all for supporting her as she led up to this. She had to push through some serious anxiety and panic this morning. As we had to leave her in pre-op, the sound of her heartrate monitor rapidly accelerating when they told us we had to leave about did me in.
**hugs** to you all.
Annie
I know why they call it "ripping your heart out" because it felt like a rubber cord was attached to mine, and the further I drove, the deeper the pain was. I'm so terrified. This tumor was discovered in February, and we don't know for sure if its benign or malignant. I'm praying that it will be nothing more than a huge, benign tumor and this will be the end of it.
I'll update when she is out of surgery. Thank you all for supporting her as she led up to this. She had to push through some serious anxiety and panic this morning. As we had to leave her in pre-op, the sound of her heartrate monitor rapidly accelerating when they told us we had to leave about did me in.
**hugs** to you all.
Annie
Wednesday, November 5, 2008
Elections
Last night we saw Barack Obama elected as President. What an incredible night! There is hope now, with a Democratic majority in house and senate, and with Obama as our leader, that we will finally make inroads into equal rights.
Sadly, Florida and California had to temper excitement with sadness, as hate and discrimination appeared to win over fairness and equality. Why is it so hard for people to allow others to be happy? Why is it allowed that GLBT citizens must be treated unfairly, and penalized, for how they were born?
My sister and brother-in-law are devastated that Obama won. They're calling it the end of the country as they know it. Although they accept Claire for who she is, marriage is for one man, one woman. It boggles my mind that people can be so narrow-minded.
I actually differ a bit from my GLBT friends. They won't rest until gay marriage is legal. I guess I've been exposed to enough of the deep south to know it will never happen, and that we should get civil unions in place. Who you devote your life to in a ceremony should not affect your legal rights. I don't care if Claire and I are united in marriage or civil union, we're together.
Claire enters the hospital on Friday. Because we're legally married, I won't have any trouble with visitation for family. But it just really brings forth the fact that my good friends that are "just" gay or lesbian don't have this same right. And that bothers me. Very deeply.
It's time for change. I hope Obama delivers.
Sadly, Florida and California had to temper excitement with sadness, as hate and discrimination appeared to win over fairness and equality. Why is it so hard for people to allow others to be happy? Why is it allowed that GLBT citizens must be treated unfairly, and penalized, for how they were born?
My sister and brother-in-law are devastated that Obama won. They're calling it the end of the country as they know it. Although they accept Claire for who she is, marriage is for one man, one woman. It boggles my mind that people can be so narrow-minded.
I actually differ a bit from my GLBT friends. They won't rest until gay marriage is legal. I guess I've been exposed to enough of the deep south to know it will never happen, and that we should get civil unions in place. Who you devote your life to in a ceremony should not affect your legal rights. I don't care if Claire and I are united in marriage or civil union, we're together.
Claire enters the hospital on Friday. Because we're legally married, I won't have any trouble with visitation for family. But it just really brings forth the fact that my good friends that are "just" gay or lesbian don't have this same right. And that bothers me. Very deeply.
It's time for change. I hope Obama delivers.
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