keep praying for my mom - update post transplant

[Mrs Tiggywinkle Again]

Also joining in. 

[Tenaj]

Praying

[Terabith]

Coming in a bit late, but I prayed for her this morning and am currently joining in with your prayer.  (Love Book of Common Prayer.). 
 

And also hoping for an update when you can. 

[Storygirl]

I prayed and will keep praying. Hugs.

[ktgrok]

No update really- started procedure about 12:45 eastern time and are predicting about 2 hours 

[ktgrok]

Dad got a text that she is out of surgery and moving to recovery. No details yet but she made it through surgery. Sister got stuck in a traffic jam for nearly two hours so is still 4 hours away. If mom stays stable I’ll probably head up there tomorrow or Saturday 

[sassenach]

17 hours ago, ktgrok said:

Oh, but in sort of good news (and forgive me if I already said this), they put in a PICC line, so that will limit how many times she needs to be stuck for all these tests. And they put her on fentanyl for pain and she apparantly likes it, lol. This whole last week she's been barely talking, in a lot of pain, and lethargic, and Dad said with a half dose of fentanyl she won't shut up 🙂 

Oh, and the doctor that told her to "just keep walking" she now calls "Dr. Walk Walk". I am unsure if she calls him this to his face - but it's likely 🙂

(in Dr. Walk Walk's defense, it is a known thing that walking will cause breathlessness, which will cause them to not want to walk, so NORMALLY that is the right thing to tell the patient...but mom is WAY tougher than the normal patient so if she says she can't walk, she can't walk)

I'm completely shocked that she had a whole transplant without a picc. I would have thought that to be standard. It will definitely help her to not get poked over and over. There are also some meds that require a central line, so it's good that they opened up that avenue.

[sassenach]

4 minutes ago, ktgrok said:

Dad got a text that she is out of surgery and moving to recovery. No details yet but she made it through surgery. Sister got stuck in a traffic jam for nearly two hours so is still 4 hours away. If mom stays stable I’ll probably head up there tomorrow or Saturday 

Praying for her and you all as you navigate travel.

[Starr]

1 hour ago, ktgrok said:

If mom stays stable I’ll probably head up there tomorrow or Saturday 

In my experience it's never wrong to head out sooner than later. Hugs

[Drama Llama]

Praying with you:

Heavenly Father, giver of life and health: Comfort and relieve your sick servant, Kathleen, and give your power of healing to
those who minister to her needs, that she may be strengthened in her weakness and have confidence in your loving care; through
Jesus Christ our Lord. Amen.

[Drama Llama]

1 hour ago, sassenach said:

I'm completely shocked that she had a whole transplant without a picc. I would have thought that to be standard. It will definitely help her to not get poked over and over. There are also some meds that require a central line, so it's good that they opened up that avenue.

Me too.  

 

[ktgrok]

This is in the notes section of her chart. 

Procedure(s):

ADULT, STERNAL DEBRIDEMENT, via sternotomy

 (exploration, drainage of large pleural effusion, Bronchoscopy, and closure with Sternal-lock 360)

 

And the nurse says the removed a lot of fluid. Shes in recovery, but intubated still and under sedation. The surgeon had been wondering if there was fluid putting pressure on the lung, hopefully these notes indicate that was the case and everything can heal now. They put three chest tubes in, had only anticipated using 1. Mom will NOT be happy about the chest tubes, she hated them the first go round, but obvioulsy she needs them! 

 

[fraidycat]

Sending love and light for a better recovery this time around. Hopefully she'll be up and sassing the staff soon!

[ktgrok]

Mom is off the vent already! O2 sats at 99% and breathing on her own!!! Lung is reinflated, and they took out 1.5 liters of fluid from her chest cavity!!! No wonder the lung couldn't expand properly! 

They have her on fentanyl,at a higher dose than pre op, and she's doing well. Vitals are good. Dad is exhausted, but was cracking jokes earlier, which is a very good sign for him. He's going to spend the night again tonight at the hospital, and my sister will stay in the guest room at their apartment with my parent's dog. The guest room and bathroom are separate from the rest of the house, so she will crack a window, turn on a fan, and lysol everything when she leaves, before Dad goes back there. 

 

[sassenach]

Just now, ktgrok said:

Mom is off the vent already! O2 sats at 99% and breathing on her own!!! Lung is reinflated, and they took out 1.5 liters of fluid from her chest cavity!!! No wonder the lung couldn't expand properly! 

They have her on fentanyl,at a higher dose than pre op, and she's doing well. Vitals are good. Dad is exhausted, but was cracking jokes earlier, which is a very good sign for him. He's going to spend the night again tonight at the hospital, and my sister will stay in the guest room at their apartment with my parent's dog. The guest room and bathroom are separate from the rest of the house, so she will crack a window, turn on a fan, and lysol everything when she leaves, before Dad goes back there. 

 

Holy smokes, that's a lot of fluid. Glad they went in and took care of business. Healing prayers going her way.

[ktgrok]

In reading more medical studies than I ever wanted to, two main risk factors for pleural effusion are a small lung in a big chest - and we know this was a "young" lung, and poor nutritional status. Y'all may remember me saying mom wasn't eating enough protein while trying to lose the weight. So, I guess she had both risk factors. And she hasn't really been eating much of anything due to nausea since she had sx 19 days ago. I know I saw low albumin in at least one of her blood draws. But now, with the PICC line in they can do nutritional support as needed, which should help. 

[Drama Llama]

16 minutes ago, ktgrok said:

Mom is off the vent already! O2 sats at 99% and breathing on her own!!! Lung is reinflated, and they took out 1.5 liters of fluid from her chest cavity!!! No wonder the lung couldn't expand properly! 

They have her on fentanyl,at a higher dose than pre op, and she's doing well. Vitals are good. Dad is exhausted, but was cracking jokes earlier, which is a very good sign for him. He's going to spend the night again tonight at the hospital, and my sister will stay in the guest room at their apartment with my parent's dog. The guest room and bathroom are separate from the rest of the house, so she will crack a window, turn on a fan, and lysol everything when she leaves, before Dad goes back there. 

 

That sounds like really good news.

-- Still praying

[Kassia]

Glad it's over and things are going well!  

[ktgrok]

Doctor said fluid was clear, didn't look like infection, but sent things out for testing just in case. 

We think combination of things, smaller lung so more free space, mom having drug reactions that made her nauseus so she didn't sleep for days on end and then was too weak to be up and mobile like she is supposed to be, probably her lack of nutrition, etc etc. Praying that things start to heal now. 

Actually, surgeon said the lung is healing nicely, so that's good. Said mom is a fast healer. 

[KSera]

I'm so glad to her the positive update. I hope this resolves the issue completely and she will be back to healing well.

[Lady Florida.]

I'm glad to hear such a good update. 

[YaelAldrich]

Praise God and the medical team! 

[LifeLovePassion]

Superb update!

[ktgrok]

Dad messaged me at 6:30 am - mom was up and "f-ing walking" as she put it. She normally does not swear but she also is NOT a morning person. I wouldn't have woken her before all the surgeries to walk at 6am, lol. But she did it!

She's on 6L of oxygen right now, after this second surgery and was on 40L before they went back in. 

[ktgrok]

ugh, she's lost 22lbs in the last 19 days, since being admitted. And is anemic. It's amazing she's strong enough to walk, period! 

[LifeLovePassion]

6 minutes ago, ktgrok said:

ugh, she's lost 22lbs in the last 19 days, since being admitted. And is anemic. It's amazing she's strong enough to walk, period! 

Maybe a nutritionist can see her and find ways to pack in some calories. 

[ktgrok]

4 minutes ago, LifeLovePassion said:

Maybe a nutritionist can see her and find ways to pack in some calories. 

I know there is one on the transplant team. She met with them pre surgery. But right after surgery she wasn't allowed to eat, until she passed a swallow test. Then shortly after she passed she was so nauseous for a while she couldn't really eat/keep stuff down. Hopefully now that they switched out one rejection drug for another, and changed pain meds, she'll be able to eat, and nutritionist can help her get her strength back. 

In good news her CBC and aterial blood gasses this morning look better - her hemoglobin is over 8 for first time since surgery. (she got 2 units of blood yesterday before surgery, and I think 1 before that). 

[AmandaVT]

Oh that's great news!! I'm so happy she's up and walking and hopefully this is the start of a full recovery!

[ktgrok]

And now DD13's youth leader contacted me, they needed another driver to the retreat 2 1/2 hours away because someone had to cancel. I said I couldn't, and it worked out as one of the kids canceled but now they will be CRAMMED into one mini van for the trip. No idea how they will fit everyone's stuff. (they have to bring air mattresses, sleeping bags, pillows, beach towel, etc on top of clothes/toiletries). 

I don't KNOW that I'm headed to NC tomorrow, so maybe I should have said yes. But with everything so touch and go with mom I didn't want to commit to being stuck as a chaperone for 3 days. 

[cintinative]

Praying for your mom. It sounds like things are moving in a positive direction for her. I will pray that continues!

[ktgrok]

Moving mom back to step down unit! 

I'm going to drive up tomorrow. I asked Dad if he wanted me to come, to help with their dog, etc, since sister is leaving tomorrow and he said, "that would be great!" Not, "well, if you want" or anything, so I know he does want me to come. My dad is the most low key guy EVER, so "great" is about as superlative as he gets. 

I'm looking at rental cars now, going to rent something so I can leave the van here with DH. If I pick it up a town over it's half the price of the ones right by me, for reasons I don't understand, lol. 

Edited March 3, 2023 by ktgrok

[kbutton]

4 hours ago, ktgrok said:

ugh, she's lost 22lbs in the last 19 days, since being admitted. And is anemic. It's amazing she's strong enough to walk, period! 

The good news is that they will be checking all her values regularly.

Have they offered her any extras with meals? When my son was in for surgery, they had all kinds of things--the clear Boost Breeze that's a protein drink (and has iron plus C, IIRC) and just tons and tons of food if he was up to eating it (https://www.boost.com/products/boost-breeze). Snacks on the floor in the kitchen. Then later, he was allowed a choice of seriously high calorie shakes and smoothies. With surgeries that deplete someone so much, there is usually some kind of a check-in with a nutritionist and a general encouragement to order extra shelf-stable stuff with meals as snacks, plus snacks. Sometimes the order doesn't go through though, and then someone has to get it unstuck and moving through the system again.

4 hours ago, ktgrok said:

In good news her CBC and aterial blood gasses this morning look better - her hemoglobin is over 8 for first time since surgery. (she got 2 units of blood yesterday before surgery, and I think 1 before that). 

That's a good direction--transfusions can really turn things around.

Someone on the forums recommended Hemaplex for non-constipating iron, and my son did really well with it. Seems like it also has C and stuff in it that is needed for absorption. 

[sassenach]

3 hours ago, ktgrok said:

And now DD13's youth leader contacted me, they needed another driver to the retreat 2 1/2 hours away because someone had to cancel. I said I couldn't, and it worked out as one of the kids canceled but now they will be CRAMMED into one mini van for the trip. No idea how they will fit everyone's stuff. (they have to bring air mattresses, sleeping bags, pillows, beach towel, etc on top of clothes/toiletries). 

I don't KNOW that I'm headed to NC tomorrow, so maybe I should have said yes. But with everything so touch and go with mom I didn't want to commit to being stuck as a chaperone for 3 days. 

That was 100% the right decision.

[ktgrok]

5 hours ago, kbutton said:

The good news is that they will be checking all her values regularly.

Have they offered her any extras with meals? When my son was in for surgery, they had all kinds of things--the clear Boost Breeze that's a protein drink (and has iron plus C, IIRC) and just tons and tons of food if he was up to eating it (https://www.boost.com/products/boost-breeze). Snacks on the floor in the kitchen. Then later, he was allowed a choice of seriously high calorie shakes and smoothies. With surgeries that deplete someone so much, there is usually some kind of a check-in with a nutritionist and a general encouragement to order extra shelf-stable stuff with meals as snacks, plus snacks. Sometimes the order doesn't go through though, and then someone has to get it unstuck and moving through the system again.

That's a good direction--transfusions can really turn things around.

Someone on the forums recommended Hemaplex for non-constipating iron, and my son did really well with it. Seems like it also has C and stuff in it that is needed for absorption. 

I'll see if I can get contact with nutritionist, or at least with transplant coordinator to make sure they are aware of the weigh tloss. As of now she's on iron in her IV. They indicated in her chart the anemia was from surgical blood loss, but I know some of the drugs she is on can cause it as well. 

5 hours ago, sassenach said:

That was 100% the right decision.

Thank you. 

[ScoutTN]

Glad she is improving and that you can go. Still praying! 🙏🏻

[Kareni]

Sending good wishes for your mother and father. Safe travels, @ktgrok.

Regards,

Kareni

[ktgrok]

I'm at my parents apartment! Mom is continuing to improve - she ate a sandwich today, and just did two laps of the floor with a rollator, with only 2L O2. Huge improvement. Her mood is SO much better - last week she was crying and in so much pain and today she said she finally feels more like herself. She was chatting about reality shows on the phone with my sister earlier and everything! 

Dad will continue to spend the night at the hospital, and come home during the day to rest/take a shower, etc. I'll stay here at night with the dog. I've been no where to pick up any new germs, and have felt totally over that bug I had for at least 5 days, I'd gotten sick just shy of two weeks ago, so should be fine to be in here. I'm keeping windows open right now, ceiling fan is on. 

I'm going to go find some dinner, and then tomorrow will do some walking with the dog on some nature trails, and am going to clean the house while I'm here. 

[Kassia]

What a relief that your mom is doing so well!  

[Drama Llama]

I'm so glad she's doing better!

 

[ktgrok]

Just talked to her again. She thanked me about a zillion times for coming up to stay with the dog so Dad can stay with her overnight. She says the timing is perfect - that before she was too sick for Dad to be any help, but now 1. she's doing well enough he's actually helpful and 2. After the scare of things going downhill, and having to go back into surgery, she wanted the comfort of knowing he is there in the middle of the night. I'm so glad I was able to come do this!

I was worried about the long drive and my SI joint, but since we were renting a car for me to come my DH made sure to get one with adjustable lumbar support, and it also had heated seats! I'm sure the heating is supposed to be for cold weather, but it acted like a heating pad when I did start to get painful. Between the car, premedicating with ibuprofen, and taking a muscle relaxer last night when I got to the hotel, I did fine. A bit sore now, but it really only started hurting the last 90 minutes of the drive. I'll take another muscle relaxer tonight and it will be okay. 

I will say, Dad is turning this place into a bachelor pad, lol. Everything is piled on the dining room table, the toilet had obvioulsy not been cleaned in a lot time, and the only real food in the house was  3 kinds of bread and 2 raw hamburger patties, lol. Oh, and manual for the instant pot was on the back of the toilet (in a bag at least) so Dad could read it to figure out how to work it. I have to say, I've never seen a manual for a kitchen gadget in the bathroom before!

I already cleaned the shower/bathtub and the toilet in the guestroom, did some dishes, etc and tomorrow I'll try to make sense of the pile of stuff on the table, sweep, clean the kitchen, etc. 

[Starr]

Love this update.

[Harriet Vane]

I'm so glad to know your dear mom is on the upswing. Thanks for sharing.

[fraidycat]

I'm glad everything is working out. 

[itsheresomewhere]

IMO, heated seats are so worth more than most can understand.  Everyone should have one. I use mine all year long when needed. 
 

So glad to hear your mom is doing better.  I hope she continues to kick some tush and gets to be released soon.  

[lmrich]

So glad you are there! Take care of yourself and your loved ones ❤️❤️ nothing  is  more important now❤️

[ktgrok]

My 5 yr old daughter likes to watch a youtube video from the Missouri Star Quilt Company channel each night with me before bed. My husband has been watching them with her while I'm gone, with her falling asleep in our bed with him while watching. So cute!

[popmom]

Wow! I’m just catching up! I’m am so happy for you and your parents! I will continue to pray. 

[ktgrok]

so, I managed to leave my pillow in the lobby of the hotel in Savannah. realized last night. And I somehow packed tons of contacts...but all the LEFT contact. They have different astigmatism axis, so with the left one in the right eye things are all funky. Distance is fine, but middle and near vision are NOT. 

I tried calling to see if someone here could get me some today, since I do have an email with my RX, but no one seems to carry the kind with astigmatism in the office. Tey have the kind without, but can't fill the rx with the wrong kind. I'd be fine with one without astigmastism correction - I've in the past gone without, but WRONG astigmatism correction is not working for me. I have an email in to see if the regular place I get them from can email me an RX for the same lense but without astigmatism, so I can get some today. But I'm not hopeful, and hate to pay for a whole box of ones without the correction anyway, although they are way way way cheaper. 

I can get a box overnighted from 1-800 contacts but blergh. For today I think I'll just wear these until I can't stand it, then switch to glasses. I just HATe wearing glasses! I have sensory issues and they really start to annoy me. And especially when driving - the loss of peripheral vision is distracting. Blergh. 

[Drama Llama]

Couldn’t someone at home overnight a box?

[ktgrok]

2 hours ago, BandH said:

Couldn’t someone at home overnight a box?

yes, but it would likely cost as much or more than having 1 800 contacts end it to me. I was going to order next month anyway so I'll just be a bit ahead.