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mom had her lung transplant today!

ktgrok

By ktgrok,
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ktgrok

ktgrok

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I was so discombobulated I forgot to come here and update you all that she was in surgery! She got the call yesterday morning at 7:30am, they said to be at the hospital by noon, and they would know by 4pm if it was a go and lung was viable. Instead at close to 7pm they finally said everything was delayed until 4am this morning. I went to bed around midnight, was up at 2am to let a dog out, and then up at 3am checking my phone, and up every 10-15 minutes the rest of the night/morning checking for a text. Then it wasn't until after noon that they finally had the go ahead and started prepping mom. She spent the whole night in the ICU though, to keep the bed, because they were worried they'd lose a spot for her if she went home last night. 

Surgery started a little after 2pm, and was over just before 8pm, so about 6 hours. (single lung transplant). She is still intubated, will likely stay on ventilator until tomorrow, and they will keep her sedated until then. The head surgeon did the procedure and was very happy with the lung and how things went. He also said it is a "young" lung, which is good for my mom but so sad. Prayers for mom's recovery and also for the family of the donor are much appreciated. 

Also, any prayers for wise decision making in my family...my mom specifically asked us NOT to come visit right away due to concerns with germs, but my sister is saying she's going to go up anyway tomorrow because Dad said, "I wouldn't tell you you can't visit". But she was at a big banquet indoors no mask on Friday, at a soccer tournament all weekend with her kids, and plans to take her kids with her even though they can't go in to see mom in the hospital. They would be exposing my Dad, and then he could bring something to my mom, or get sick and not be able to visit, etc. I am trying very hard to make that clear without causing more stress and drama when we are all at our limit. (she has a student she loves who is in hospice now, so really emotionally at her limit for sure)

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ktgrok

ktgrok

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9 minutes ago, mommyoffive said:

I have zero experience with this, but your sister going doesn't sound smart.  I would at least tell her to test for Covid and wear a really high quality mask.  Maybe that is already enforced at the hospital.

she's mask at the hospital, that's required, but be sleeping at the apartment my dad is staying at. So masks off at night, plus when eating, etc, in the house he is in. And they'd only mask when he was around, I'm sure. 

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Elizabeth86

Elizabeth86

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Yay for the lung transplant! My uncle has had a lung transplant and he really has lived a good life with it. I pray your mom is just as successful. Modern medicine can be so amazing!! The situation with your sister is so tough, I’m sorry. Please keep us updated!!

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fraidycat

fraidycat

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Hoping for a swift and easy recovery for your mom.

Sending love to the family of the donor.

And hoping your sister will listen to reason and put your mom's health and wishes above her own wants at this time. I agree that bluntness is called for in this situation.

Big hugs. You've been on quite the rollercoaster lately.

 

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ScoutTN

ScoutTN

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9 hours ago, Harriet Vane said:

I'm so glad for your mom! 

Be blunt with your sister. Super blunt. She can Zoom your mom for reassurance rather than exposing her and your father to infection. Sheesh.

This. Just say no.

Praying for a great recovery for your mom!

And comfort and peace for the donor’s family. 

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ktgrok

ktgrok

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Sister is going, but modified plans. She's going to take two days to drive up hopefully, and use that time to make sure no one comes down with anything. I think that's a good plan, as far as minimizing window of incubation, since they last haad school on friday and won't be up there until tuesday now. And is now going to stay at a hotel, rather than in my parent's apartment. I had a feeling she'd figure out a more cautious plan once she knew mom was safe and out of surgery. 

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ktgrok

ktgrok

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Mom is initiating breathing on her own, so they plan to pull the vent later today as long as bronchoscopy results are good. 

But my son freaked out on my sister and texted her calling her selfish and names I won't repeat. UGH UGH UGH. Now she's calling and texting me, and I yelled at him. His Dad died from chronic rejection of a kidney transplant, so this is really really hard for him, which doesn't excuse his behavior but does explain why he's so emotional. Now she thinks I was saying the same things about her, which I wasn't, and yeah. It's a mess. 

He did calm down and apparantly listened to me telling him that he didn't help anything, just made things more stressful for both me and my sister. He apologized to me (I told him he needs to apologize to her) and brought me ice cream, candy, and a caesar salad kit (all favorites of mine) in apology to me. Now...to get him to understand that if he was concerned he should ask questions and express concerns without name calling. UGH. (this is my autistic 23 yr old)

AND my 5 yr old woke up sick during the night, so even if I wanted to and Dad asked me too I can't go up there. She's got a low fever and a cough and sore throat. DH is out of town.

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sheryl

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14 hours ago, ktgrok said:

I was so discombobulated I forgot to come here and update you all that she was in surgery! She got the call yesterday morning at 7:30am, they said to be at the hospital by noon, and they would know by 4pm if it was a go and lung was viable. Instead at close to 7pm they finally said everything was delayed until 4am this morning. I went to bed around midnight, was up at 2am to let a dog out, and then up at 3am checking my phone, and up every 10-15 minutes the rest of the night/morning checking for a text. Then it wasn't until after noon that they finally had the go ahead and started prepping mom. She spent the whole night in the ICU though, to keep the bed, because they were worried they'd lose a spot for her if she went home last night. 

Surgery started a little after 2pm, and was over just before 8pm, so about 6 hours. (single lung transplant). She is still intubated, will likely stay on ventilator until tomorrow, and they will keep her sedated until then. The head surgeon did the procedure and was very happy with the lung and how things went. He also said it is a "young" lung, which is good for my mom but so sad. Prayers for mom's recovery and also for the family of the donor are much appreciated. 

Also, any prayers for wise decision making in my family...my mom specifically asked us NOT to come visit right away due to concerns with germs, but my sister is saying she's going to go up anyway tomorrow because Dad said, "I wouldn't tell you you can't visit". But she was at a big banquet indoors no mask on Friday, at a soccer tournament all weekend with her kids, and plans to take her kids with her even though they can't go in to see mom in the hospital. They would be exposing my Dad, and then he could bring something to my mom, or get sick and not be able to visit, etc. I am trying very hard to make that clear without causing more stress and drama when we are all at our limit. (she has a student she loves who is in hospice now, so really emotionally at her limit for sure)

Yay!  So very happy for her.  I've prayed now and then for your Mom but thought (for some reason)_it was going to take a while and she would go in maybe summer or fall. I remember you talking about her needing to lose weight (for surgery I guess) and logistics of family moving perhaps temporarily to NC.  So glad all went well.  Yes, it's bittersweet for both families (donor and recipient).   I'd simply have a heart to heart with her nurse letting them know situation with your sister.  I'm certain they would not permit her to visit your Mom "right now".  

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ktgrok

ktgrok

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Mom is off the ventilator! Some patients can take days or weeks even, so this is great news. Patients generally hate it, so I'm sure she's glad it is out, as much as she can be aware of things. They are gradually reducing sedation/anesthesia now. Dad went home to let dog out, and will be going back in a bit. Mom is in ICU with not one but two nurses assigned to her, so he feels good about going home for a bit. He's NOT good at medical stuff, so I am sure he needs the break. 

Meanwhile, my 5 yr old's motrin wore off and her temperature was 102.2. and that was after a cold drink, so likely even higher. Ugh. Gave more motrin. She feels actually pretty good - I have to keep reminding her to rest. Bit of a junky cough, my guess is it is mucous from post nasal drip not a true lung thing. Covid negative. She's been vaccinated for flu, and doesn't look like she has the flu. 

I am kicking myself for taking the kids roller skating  wednesday. Since mom said she didn't want us to go up right away I went ahead and took them to a homeschool skate event. We'd never been there before and it was hot and smelly. The kids were hot and I let them take their masks off, and we only stayed 30 minutes. But it is the only place she's been since Sunday at church (masked). But I should have realized stinky/hot = bad ventilation. Sigh. 

Now even if Dad and mom DID need/want me up there I couldn't go. 

On the bright side, out of guilt DS23 cleaned up, ran the robot vacuum, and took all the trash to the curb. 

 

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Starr

Starr

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You've got the life happens happening. It's hard but you will make it through and be available for Mom and Dad when they get home and need it. Your son sounds like he's really trying after such an emotional response. Your sister should understand what happened more easily than your son. I'm so sorry your dd is sick on top of it all. Wow, a lot. Praying for all of you and pleased your mom is doing so well post op.

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ktgrok

ktgrok

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1 minute ago, Starr said:

You've got the life happens happening. It's hard but you will make it through and be available for Mom and Dad when they get home and need it. Your son sounds like he's really trying after such an emotional response. Your sister should understand what happened more easily than your son. I'm so sorry your dd is sick on top of it all. Wow, a lot. Praying for all of you and pleased your mom is doing so well post op.

Thank you. Adding in that DH left for a conference yesterday while mom was in surgery and we found out just last week that DH's favorite aunt, who I've become close to, has stage 4 lung cancer and yeah, it's a lot. Poor woman went in for a slight cough and found out she had lung cancer, and it had spread already. It's...a hard time. 

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ktgrok

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49 minutes ago, Starr said:

You've got the life happens happening. It's hard but you will make it through and be available for Mom and Dad when they get home and need it. Your son sounds like he's really trying after such an emotional response. Your sister should understand what happened more easily than your son. I'm so sorry your dd is sick on top of it all. Wow, a lot. Praying for all of you and pleased your mom is doing so well post op.

He really is. I mean, he remembered it was trash day on his own and took the cans down, since DH isn't here (DH usually does that). He remembered my favorite foods, ran the vacuum, just really helping out. I know he feels badly about making things worse for me. And is just in an emotional place after losing his dad. You'd think my sister would get that and also remember he's ASD and coming from a good place as far as worry for his grandma even if he went about VERY VERY badly. 

He's at the point where I was able to talk to him and he said he WILL apologize to her, but isn't ready yet. 

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KSera

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5 hours ago, ktgrok said:

Sister is going, but modified plans. She's going to take two days to drive up hopefully, and use that time to make sure no one comes down with anything. I think that's a good plan, as far as minimizing window of incubation, since they last haad school on friday and won't be up there until tuesday now. And is now going to stay at a hotel, rather than in my parent's apartment. I had a feeling she'd figure out a more cautious plan once she knew mom was safe and out of surgery. 

Does she have n95s to wear?  I don’t know if ICU is different, but around here, hospitals just hand out surgical masks for people to use, and that would not be sufficient for this situation.

 

17 minutes ago, ktgrok said:

You'd think my sister would get that and also remember he's ASD and coming from a good place as far as worry for his grandma even if he went about VERY VERY badly. 

 

Aw, frustrating for you that your son went about it that way, but I feel bad for him as well. It makes sense that he is raw about that. I find my parents just don’t seem to get that my kids on the spectrum are kids on the spectrum and aren’t always going to respond or act just the way they think they ought to, and it’s not a moral failing on their part. 
 

i hope your dd is better soon!

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Terabith

Terabith

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I mean, I get that he hurt your sister's feelings, but I also kinda think that he's RIGHT.  It's really hard to criticize him for saying what is objectively the truth.  I'm glad she's being slightly less dangerous to your mom's health, but I think it's still pretty risky and also is putting your dad in a really awkward position.  Your mom requested you guys not to come for a really good reason.  

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ktgrok

ktgrok

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23 minutes ago, KSera said:

Does she have n95s to wear?  I don’t know if ICU is different, but around here, hospitals just hand out surgical masks for people to use, and that would not be sufficient for this situation.

 

Aw, frustrating for you that your son went about it that way, but I feel bad for him as well. It makes sense that he is raw about that. I find my parents just don’t seem to get that my kids on the spectrum are kids on the spectrum and aren’t always going to respond or act just the way they think they ought to, and it’s not a moral failing on their part. 
 

i hope your dd is better soon!

Oh, good question. I know my parents have N95s at the house, the kind with the band behind the head, as my mom hates the ones that go behind the ear. I could send some kid sized KF94 there, or ask my sister if she wants me to send some...but I have no idea how well that would go over as far as increasing drama. Sigh. She and I have a touchy relationship as she has always always thought I was judging her and thought she wasn't smart...I have no idea why. She's got a freaking doctorate! Sigh. 

And yeah, people don't get that you don't outgrow autism. And stress makes it worse, and they don't process things the same way. He CAN and DOES learn better ways to handle things, but it doesn't generalize so since he's never been in this exact situation we have not explored how to handle it before. Again, not an excuse to call his aunt a bad word, At all. He does know better than that. But he was hurt and scared and reacted like an autistic kid who is hurt and scared, basically. 

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ktgrok

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4 minutes ago, Terabith said:

I mean, I get that he hurt your sister's feelings, but I also kinda think that he's RIGHT.  It's really hard to criticize him for saying what is objectively the truth.  I'm glad she's being slightly less dangerous to your mom's health, but I think it's still pretty risky and also is putting your dad in a really awkward position.  Your mom requested you guys not to come for a really good reason.  

Well, and now he's kind of convinced that his mean text is WHY she changed some aspects of the trip, so he feels it was worth it. I'm pretty sure that's not the case. But yeah....

My biggest issue now is that she's ignoring my mom's request. I think my mom should get to make those boundaries since it is her life at stake. When I said that my sister said that mom didn't say she COULDN'T come, just that she thought it wasn't a good idea. Which is just semantics. But on the other hand my Dad really could use back up - he's probably on the spectrum himself, doesn't do medical stuff very well, and is also worried that their dog isn't handling them being gone well. He got a camera and realized that when they are gone the dog sits at the front door the entire time they are gone, waiting. Which stressed him out. So having someone to let the dog out and spend time with her is a help, or if it has been long enough to be considered safe to go to the hospital, having someone other than my dad there is probably good. Which is part of why I was going to go up there. I have a list of people I'd want with me in a hospital and my dad is not on that list, lol. To be fair, neither is my husband. I'd want my mom (who stayed overnight with me when I had my bariatric surgery) or my older son. 

So, it's complex. More complex than my son is really realizing. Basically, I sort of get why  my sister is going up, although again I think she should wait until my mom says it is okay. But I also get that Dad should have a say in it if. But I get why my son is mad. It's all just very...human. Human messy. 

So yeah, prayers for grace for all involved, and for all involved to show some grace, would be great. 

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ktgrok

ktgrok

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I talked to her!!!!!!!!!!

She's still loopy from anesthesia and pain meds, but I talked to her! I called to check on her and my dad had set it up so I have a password, and an on an approved list, so they can tell me her medical info. They put her on meds to keep blood pressure up - which was expected - but are weanign them down already. She is having trouble with pain control, but that was expected. They tried a different med and it seems to be helping, and put on lidocaine patches on areas that are bad just to try to help. They don't want to give her so much they have to put her back on the vent, so are sort of playing with meds. Tomorrow they will get her out of bed, and I think that will help her a lot, I know it will be painful but they will premedicate for the pain and just being mobile always helps a bit. It's a better pain. They will have the speech pathologist in tomorrow for an evaluation, and then a swallow test on wednesday at the earliest.

I heard her in the background, talking to the nurse and I cried. I told the nurse thank you for telling me everything, and that hearing her made me feel so much better. He then asked if I wanted to talk to her! So he put her on, and I told her I wish I could be there, but it sounds like you are getting excellent care. She said, "Yes, excellent". I said, without realizing I was on speaker phone, "And your nurse sounds cute!" She laughed and said, "VERY!!!" I could hear him laugh too, in the background. Oops. Plus laughing hurt...but I could tell she was glad to have laughed, even though it hurt. Then she was done, but that's fine. 

Also, sister is staying out of indoor areas other than bathrooms, but forgot masks! I just overnighted some to my dad's apartment. She figured he had some but the ones he has are not going to fit my nieces, so I sent up the same ones my kids that age wear, plus the size I wear for her. 

I also sent a sleep mask, as the nurses had said sleeping is a real issue in the hospital and a sleep mask might help, it will be there tomorrow, and a caddy with pockets that fits on the bed rail, for when she goes to the step down unit, that she can put her phone, tv remote, whatever in. I suggested to my sister, who was trying to think of ways to help, that they said photos of family members are a good idea, to remind then why they are putting themselves through this, so she and her girls will get some photos printed or make cards or something. 

My son is also calm now, and my sister is no longer mad at me, so big sigh of relief. 

DD5 still has a fever of 102 when motrin wears off, but is acting fine otherwise. Go figure. She's confined to my room and bathroom, to try to avoid other kids catching it, and honestly, if I'm going to get it I'd rather just get it and get it over with now, rather than a week from now, so she will sleep in there with me. 

anyway, that's the update. I'm exhausted!

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ktgrok

ktgrok

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Mom is up and in a chair! Lots of pain, but they are medicating as much as they can. 

Sister is there, she did buy some masks on the way up which was good as the ones I sent didn't arrive yet. She is taking my parent's dog out for the day, to go walk around downtown or something. Dad keeps wanting to leave the hospital to check on the dog, and mom wants him to stay at the hospital. He says, "well, she doesnt' really even know what's going on, so why be there" and my sister and I are like, "it's a comfort just to BE there for her!!!"  I told sis to remind him I bought him 5 books for Christmas, sit down in a chair and read one! Just BE there. 

I did hear that sis was clearing her throat a lot on the phone...I'm REALLY hoping she isn't sick, but at least they were getting out of the apartment quickly in order to minimize germ exposure to my dad. Sis has chronic allergy/asthma issues so hopefully just that. I have no control over any of it, and HATE that my DD is sick so I can't go up there and help out and ugh. 

 

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ktgrok

ktgrok

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What is really crazy is I only realized last night that lung transplants are such a recent thing! They only started doing them in mid/late 80s!!! I had no idea they were a within my lifetime thing. I mean, i guess I should have realized that, but I didn't. 

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