Update on Allan

[One for Sorrow]

Allan is extremely ill.

His lung function over the past week has plummeted, and last night they had to intubate him. He's now on a ventilator.

Since the g-tube insertion a week ago, his lung function has sharply declined. They put him on bi-pap yesterday, but it wasn't working well enough--the level of CO2 in his blood was dangerously high, and his O2 sats and heart rate were fluctuating wildly.

I want to spare you most of the details, yet be honest because I know many of you are his friends and want to know what's going on. He very nearly died last night.

Right now it looks as though the infection is in his lungs only, not his bloodstream, and the g-tube site doesn't seem to be infected, either. A sputum culture revealed that he definitely has a b. cepacia infection again, and they're trying another combination of 5 antibiotics to combat it. One of his doctors thinks he may have picked up another germ or virus since his hospitalization that may be contributing to this.

His condition is critical. I visited him this morning and he had another fever--this one was about 102 degrees. Allan was very heavily sedated. They're going to try to wean him off the ventilator and back onto bi-pap as soon as they think he can handle it. Being on a ventilator has a lot of complications, especially for CF patients. He won't be able to cough out any of that infected gunk in his lungs and will have to rely on the antibiotics alone.

My poor boy. :( I love him so much. There's no other way to describe yesterday other than the most excrutiating, almost unimaginable hell on earth for Allan, yet I believe if anyone could pull through this, it's him. It's my greatest hope that he'll be back online soon to tell you what happened himself, in one of his priceless rants that tears at your heart and makes you want to laugh at the same time.

I'm at home right now, but I'm going to head back over to the hospital to see Allan again soon. His dad came from New York this morning to be with him, and my grandma came from Oregon. I very much doubt Allan will be aware of my presence, and it's even more unlikely that he'll remember any of this (thank the gods) if he is. I'm going to go spend some time with him now, but I'll try to keep you guys informed.

I love him more than anything.

Jessica

[viscousmemories]

Shit, I'm so sorry Jessica. Thank you for updating us.

:(

[Ymir's blood]

I am sorry to hear this. Please accept my sympathies in this difficult time. It is my fervent hope that Allan's condition improves. Take care of yourself as well.

[cappuccino]

:sad: Oh no I'm so sorry to hear that, I noticed that he hadn't been online recently. Shit I hope Allan will be able to pull through this crisis.

Thank you for updating us too :(

[Dragar]

Oh, gosh Jessica. I'm so very sorry. I'll be thinking of both you and Allan, and I very much hope he can pull through.

[livius drusus]

That's just so horrible. I hope he pulls through this time like he always has and please, Jess, take care of yourself as well. :badday:

[freemonkey]

Jess, I'm sorry you both are having to go through this yet again. But you're so right, if anyone can pull through this, its Allan. :hugme:

[Roland98]

Oh, man, Jess. :( I don't know what to say, except that you know we're all thinking of both of you.

[SharonDee]

(((Allan)))
(((Jessica)))
:worry:

[Anastasia Beaverhausen]

Oh, fuck. :(

Jess, I'm so sorry. Hang in there, girl. :( :huggle:

[HelenM]

:( I hope he pulls through.

Helen

[Shake]

Definitely not the update we've been waiting for, but thanks for keeping us informed. Hugs to both of you and I hope the next update is more positive.

[wildernesse]

I'm so sorry to hear this. I will be thinking of you both and hoping for better news soon.

[JoeP]

Damn. This is hard. I'm sorry for Allan and for you. I hope he recovers from this dip quickly.

joe

[pescifish]

Thank you for taking the time to update us, Jessica. I can't imagine how hard it is to go through the crisis like the one last night. I am sure that your presence at his side (and very existence in his life!) makes it possible for him to fight as hard and well as he does.

I am so glad your grandmother is with you so that you have someone to help keep you strong while the docs are doing their thing with Allan.

My love to both of you.
(Call me, day or night, ok?)

[curses]

I'm so sorry to hear this. I hope things start to look up for you both soon.

[Carnivale Ed]

I don't know Allan but, when you hear something like this, it really doesn't matter. I hope he gets better. Take care of yourself.

CE

[Crumb]

So sorry Jessica... :(

[Stormlight]

:(

[Leesifer]

I'm so sorry to hear this, Jessica. My thoughts are with you both.

[ceptimus]

I don't know what to say. :(

[MooseIBe]

I am thinking of you both :(. I hope so much that he pulls through this. He's always struck me as having a great fighting spirit, so I believe that he can.

[One for Sorrow]

"If he was sick yesterday, he's very sick today."

That was the first thing his doctor said to me yesterday morning when I got to the ICU. His eyes were red-rimmed, too. Oh fuck.

They added more antibiotics, put him back on prednisone for the inflammation in his lungs, and have the ventilator set to do things that "ventilators aren't normally meant to do." I didn't ask what that meant, because I needed to see Allan, so I hurried back to his room.

Since then, there has been a slight improvement in his condition, although it remains largely unchanged. He had a fever yesterday morning of 102 degrees, but it responded to the tylenol they gave him and hadn't recurred as of 1:30 AM. It's almost 8:30 now--I'll head back over to the hospital soon. The other positive change is that there's less carbon dioxide in his blood now...

His mom and stepdad drove here from Florida and arrived around 2:00 yesterday afternoon. His mom and I spent the day crying a bit and holding his hand--talking and singing to him in case he could hear us on any level. Allan, when you read this and I so hope you do, I fully expect you to crack a joke about me torturing you with my singing while you were unable to plug your ears. His dad read to him from a book of Russian fairy tales. Allan is heavily sedated but maybe he could hear us on some unconcious level--I don't know. At one point during the evening I was alone in the room with him, stroking his hair and holding his hand while I talked to him, and his eyebrow twitched. It was the only movement he had made all day so perhaps he did hear me. The nurse brought in another dose of the sedative a few minutes later so it might have worn off somewhat. I hope he doesn't remember any of this, though. I hope he doesn't remember the couple of days before the ventilator because they were...horrendous. He was fully aware of what was going on then, though.

They'd only allow him two visitors in his room during the night hours, so his mother and stepfather stayed with him while his father and I came home. Pretty soon, we'll do a "shift change" and his father and I will stay with him during the day. I want to get going, but his dad's still asleep. I hate leaving Allan. I hate it. I think he's unaware of my presence right now, though, but at some point in the not-too-distant future they might try to wean him off the sedatives, if they can get him less dependent on the ventilator. It's at very high, uncomfortable settings right now, so they're giving him lots of morphine and keeping him unconscious. Being aware and being on a ventilator would be extremely upsetting for him, so there's no way in hell I'm leaving Allan's room then. I'll let his dad sleep a little while longer and I'll go take a shower or something. If he's still not awake I'll either wake him up or let him catch a bus to the hospital. (I know it sounds mean but it's easy enough to get there by bus).

I'll post again when I can, and I'll tell Allan that all of his friends around the world are pulling for him.

[livius drusus]

We are. And for you too. :badday:

[MooseIBe]

seconded.

[Dragar]

Thirded. Thank you for the update, Jessica. We're all rooting for him.

Keep talking to him! Even sedated, it's more than possible he can on some level 'hear' or be aware of your voice. And I imagine the sound of a familiar voice would be comforting, even if not on a conscious level.

Please look after your own health too. :badday:

[Leesifer]

Thirded. Thank you for the update, Jessica. We're all rooting for him.

Keep talking to him! Even sedated, it's more than possible he can on some level 'hear' or be aware of your voice. And I imagine the sound of a familiar voice would be comforting, even if not on a conscious level.

Please look after your own health too. :badday:

Ditto to all of the above.

I know how difficult it is to think of yourself at these times but do try, Jessica. :huggle:

[MonCapitan2002]

I read what you said on the other forum. It is my hope that he makes a full recovery. I don't know how likely that is, but I do want you to know that I wish it. If I could snap my fingers and make him better, I would. Sadly, I am unable to do so. My thoughts and sympathies are with you both.

[Shake]

"If he was sick yesterday, he's very sick today."
What a way to start your day. :ffsad:
I'll post again when I can, and I'll tell Allan that all of his friends around the world are pulling for him.
Please do, because we sure are. We sure are.

[Bella]

Thinking of you, Jessica, and Allan as well.

To echo what others have said, please take care of yourself. Make sure you're eating properly.

[Ymir's blood]

:(

[MooseIBe]

I hope he's feeling a little better today .. and you, Jess.

[One for Sorrow]

As of this morning, Allan was doing slightly better. He's still on the ventilator, and probably will be for a while. It's at a very high, uncomfortable setting, so they're keeping him sedated. His doctors keep stressing how difficult it is for CF patients to come off the vent, especially with b. cepacia. Even if they can get the infection under control, getting him off the ventilator will be another hurdle.

His fevers seem to have come down a bit, as well. There have been some problems, though. I was at home sleeping because I stayed the night at the hospital last night, and his dad just came back to the apartment. He said they're giving Allan a blood transfusion--something wrong with his hemoglobin? I don't know what it's about yet, and it's nearly impossible to get information out of his father because he has limited English and likely doesn't understand much about the situation himself. I can't go back to the hospital just yet because the nurses would be changing shifts right about now and they kick everyone out for that. I will go back in about an hour, though, and stay with him through the night again, and hopefully I'll get a better idea of what's going on. His parents and I are staying with him in shifts--right now his mom and stepdad are with Allan, and tonight his dad and I will be with him.

This morning there was some worry about his gallbladder, too. He's not having any specific symptom that alarms them. But, from what I understood, a lot of patients in his condition have inflamed gallbladders so they were going to do an ultrasound to try to see if there's anything wrong. If it is inflamed, then they'll try to treat it with drugs. Eventually his gallbladder may have to be removed, but there's no way he'd survive such a surgery in his current condition.

The amount of carbon dioxide in his blood has continued to decrease, too, so that's good. That's about all I know, for now. I haven't been over there since this morning, but if there were any significant changes his parents would have called me.

I love him so damned much. I know many of you love him, too, and are feeling the same frustration and helplessness about this. When Allan 'twitched' the other day while I was talking to him, I had been saying this:

"I know that when we met, you were worried about getting into a relationship with me, because you were ill, and didn't want to hurt me. I had known this was going to happen I'd have still been with you in a heartbeat. You are the best part of my life, you are everything to me, and I love you. It's so hard for me to express how much I care. Being with you is worth every moment, and no matter how much time we have together, it's worth it." I don't know if I've ever clearly stated that to him before, but I hope he knows. And I hope that if he has heard nothing else since being sedated, he heard that.

[viscousmemories]

That's beautiful, Jess. If you haven't explicitly told him before, I know you've shown him.

[Dragar]

From what Allan's written online, I'm sure he knows, Jess.

Thank you for the update. The improvements, even if slight, are good news.

[Dingfod]

What Dragar said.

/me offers hugs to Jess and Allan

[freemonkey]

That really was beautiful, Jess. I'd be willing to bet that he already knows all that, but saying it/hearing it is never a waste of breath.

{{{hugs}}}

[The Lone Ranger]

That really was beautiful, Jess. I'd be willing to bet that he already knows all that, but saying it/hearing it is never a waste of breath.

{{{hugs}}}

Seconded.

Best wishes,

Michael

[Ymir's blood]

Allan is very fortunate to have you and I hope the two of you have many happy days and years together.

[mountain_hare]

I'm shocked that Allan has gone so far downhill. I was talking to him about 5 days back, and he mentioned that things had gone from bad to worse, but I still didn't expect this. :(

I certainly hope that he pulls through. It's good that some improvement has been seen, no matter how slight.

[pescifish]

I don't know if I've ever clearly stated that to him before, but I hope he knows. And I hope that if he has heard nothing else since being sedated, he heard that.He knows it, Jessica.

Perhaps only the gravely ill can truly understand the need to experience each moment of our lives fully when life brings what it does. But, from the conversations he and I had during the time before your first trip to visit him, it was clear to me that he knew you do understand: the joy and the pain. Your relationship is one of life's real treasures. He would never have put you through the pain if he didn't know what joy he has brought to your life as well.

Oh ugh. This would be so much easier to say if I were with you and could give you the hug and support in person.

[Sweetie]

:deepsigh:

[One for Sorrow]

He's continuing to get a little better every day. One of his doctors told me this morning that three days ago, he didn't think Allan would have improved as much as he has in this amount of time. Allan getting better at a faster rate than expected. He's still on the ventilator, but isn't as reliant on it. They're going to try weaning him off of it and onto bi-pap again soon--perhaps in the next day or two.

The ultrasound didn't reveal any gallbladder problems, either.

[Lauri D]

He's continuing to get a little better every day. One of his doctors told me this morning that three days ago, he didn't think Allan would have improved as much as he has in this amount of time. Allan getting better at a faster rate than expected. He's still on the ventilator, but isn't as reliant on it. They're going to try weaning him off of it and onto bi-pap again soon--perhaps in the next day or two.

The ultrasound didn't reveal any gallbladder problems, either.

Great news, Jess. Wonderful to hear.

[Dingfod]

Good news, Jess. Thanks for the update.

[SharonDee]

Oh, I'm so happy he's getting better. Here's to that trend continuing! :yup:

[Anastasia Beaverhausen]

Oh thank the stars.

[Dragar]

Good news!

[livius drusus]

That's great news, Jess. I'm not suprised he's impressing doctors right and left. :hug:

[Leesifer]

:phew: that's good news.

[ceptimus]

Excellent. I hope he continues to improve. Remember to look after yourself, OfS as well as looking after Allan.

[Carnivale Ed]

That's great to hear.

[One for Sorrow]

Hi everyone. There hasn't been much change, although again he is doing slightly better and they've adjusted the settings on the ventilator down so now it's on a lower setting. Allan seems to be tolerating that well, so there's some good news. He's still heavily sedated.

[livius drusus]

Even slight improvements are improvements. Keep taking care, please. :hug:

[Ymir's blood]

I hope that his condition continues to improve.

[One for Sorrow]

Allan has taken a turn for the worse. They've got him back on full ventilator support, and 80% oxygen. What's more...they've found a bacteria in one of his blood cultures from 5 days ago. They haven't identified it yet, but it's the same type of bacteria as b. cepacia so that's very likely what it is. They don't consider it sepsis (http://www.nlm.nih.gov/medlineplus/ency/article/000666.htm) yet, but this is really, very bad. They won't consider it sepsis unless his blood pressure drops. His doctor told me that sepsis with this germ has about a 90% mortality rate...

Blood cultures from 4 days ago have not shown any bacteria, yet. They give it 5 days to grow something. The positive blood culture was taken before Allan's current regimen of antibiotics, so it may have already been eradicated. I hope. He's still having high fevers, so there's probably an infection somewhere. An infection in the blood stream would be the worst place for it, so let's hope it's not that. They'e added another antibiotic to the mix, too.

As for Allan's lungs--well, his difficulty breathing may largely be because he's retaining a lot of fluid. They've given him a diuretic for it, which may help.
I love him so much. I'd do anything, but there's nothing I can do...

[livius drusus]

Oh Jess... :( :badday:

[freemonkey]

Jess, I'm really sorry to hear this, I wish there was something I could do to help you through this right now..... Is there anything I can do? :worry:

[Ymir's blood]

:(

[pescifish]

:ffsad: I'm so sorry to hear of this decline in his condition.

[viscousmemories]

I'm sorry, Jess. :(

[MooseIBe]

Me too :(. I hope there's some good news soon and we see him back here!

[fragment]

:(

[Leesifer]

:(

[Dragar]

Oh gosh, Jess. :ffsad:

[ManM]

:(

[beyelzu]

Allan has taken a turn for the worse. They've got him back on full ventilator support, and 80% oxygen. What's more...they've found a bacteria in one of his blood cultures from 5 days ago. They haven't identified it yet, but it's the same type of bacteria as b. cepacia so that's very likely what it is. They don't consider it sepsis (http://www.nlm.nih.gov/medlineplus/ency/article/000666.htm) yet, but this is really, very bad. They won't consider it sepsis unless his blood pressure drops. His doctor told me that sepsis with this germ has about a 90% mortality rate...

Blood cultures from 4 days ago have not shown any bacteria, yet. They give it 5 days to grow something. The positive blood culture was taken before Allan's current regimen of antibiotics, so it may have already been eradicated. I hope. He's still having high fevers, so there's probably an infection somewhere. An infection in the blood stream would be the worst place for it, so let's hope it's not that. They'e added another antibiotic to the mix, too.

As for Allan's lungs--well, his difficulty breathing may largely be because he's retaining a lot of fluid. They've given him a diuretic for it, which may help.
I love him so much. I'd do anything, but there's nothing I can do...


fuck, i am so sorry, i wish that there was something i could do. :(

[cappuccino]

Oh no :sniffle: :worry: That's terrible to hear. I was hoping that Allan had taken the turn for better. I too wish there was something I could do.

[Shake]

Damn, that sucks. I was hoping for some more good news. Hope the new meds work.

[viscousmemories]

Allan has received a total of US $6,530 in donations as of October 31st.

While this is a good amount of money for an almost entirely word-of-mouth, two month old fundraising effort, it is still only a fraction of the estimated $400,000 needed for the double-lung transplant.

If you haven't donated, please do. If you have donated and can afford it, please consider making another donation. Most importantly, please spread the word of Allan's situation and advertise www.save-allan.org at every available opportunity.

Thank you!

Please feel free to copy this image and use it wherever you can to help promote Allan's site:

http://www.freethought-forum.com/images/save-allan.gif

[One for Sorrow]

Well, a blood culture from the 31st revealed gram negative rods, too. It's probably b. cepacia. His blood pressure is lower than it has been, like 96/47, and he's been having 103 degree fevers today. Damn it. :(

[livius drusus]

Damn it.

Seconded. :deepsigh:

[wildernesse]

:(

I'm so sorry to hear this recent turn of events. And sorry that I can't do anything.

[seebs]

I had a very spooky dream about talking to Allan (I invented a sort of East Coast accent for him... Not sure exactly what it was, somewhere between New Jersey and Georgia) recently. I mean, the contents weren't spooky; he was all cool with stuff, and he seemed happy. It's just that dreams like that always scare me.

[viscousmemories]

Did you watch this video (http://www.wral.com/news/5129014/detail.html), seebs? He actually has a slight Russian accent.

[seebs]

No, I never saw the video.

Well, shit. (http://www.save-allan.org/forum/viewtopic.php?t=149)

today is a very very bad day
the doctors feel its just past the hope of any return
they await the arrival of allans mom before they plan to remove the resperaitor
jessie of course cant stop crying ..me too
and i know all of you will cry today also

[MooseIBe]

oh my God I hadn't seen this :(.

[livius drusus]

:sad:

[MooseIBe]

I know it sounds very bad but .. is there anything at all that can be done? Any sort of hope? These things sometimes do happen.

[Dingfod]

Allan didn't make it. (http://www.freethought-forum.com/forum/showthread.php?t=5073)

[MooseIBe]

I read that thread immediately after quitting this one .. I was so sorry to hear it :(