Laura surgery update

[teffaz]

Thank you for your very informative updates on Laura, Barbara.  Since my last post, I have become ill with a cold. That means I will not be able to visit Laura as I had planned on doing. I'm sad about that, but happy that Laura is doing so well in her recovery. I will send lots of prayers and positive thoughts her way like so many are doing!

Brenda

[BarbaraS]

Hi everyone -

Here are today's (4/18) updates on Laura's progress:

 - She had another MRI last night so the docs could see how much of the tumor was left - she is awaiting results.
 - She had her catheter removed today and was able to take a shower with assistance.
 - She was able to feel the left side of her tongue a little bit today (as opposed to yesterday, when it felt completely numb).
 - She's still seeing double, but it seems to be getting a little bit better every day.
 - She's been taken off IV meds and put on oral pain meds, antibiotics, vitamin C, and iron. She says trying to take pills while drinking through a straw is quite a challenge!     
 - She hasn't eaten much at all today, as it's a lot of effort to try to chew and to drink through a straw, so she has been feeling nauseated/been sick from taking pain meds on an empty stomach. (As I was talking to her, they gave her some anti-nausea meds IV push.) Her blood sugar was also a little low today because she hasn't eaten.
 - Her iron levels are very low, so they are planning on putting her on a 3-day regimen of IV iron. She reminded them that she had donated her own blood prior to her surgery, so they are going to check and make sure that it wasn't already used (for her in ICU or given to someone else).  If it is still available, then they will give it to her in place of the IV iron.
 - She also found out today that through some kind of mixup, that the BAHA was never ordered (which is why it was not available). Her response to that was that these things happen - we're all human.  So true.  Classic Laura - so sweet and understanding!

Apparently, the physical therapist came by today to do a preliminary evaluation and mentioned to her that she would be discharged tomorrow and moved to an acute care facility for a couple of days before going home.  She had not heard anything like this from her surgeon or anyone else and is very concerned, as she does not feel ready to be moved. One of the nurses overhead the conversation and mentioned to Laura afterwards that she was unaware of this and would mention it to the doc. Laura is also going to talk to her doc and tell him that she does NOT feel ready to leave yet.  I am really hoping this is just a misunderstanding. I can't imagine that she would be discharged so soon - she's barely ambulatory. Have any of you heard of anything like this before? I know insurance companies can be problematic, but this seems wrong to me.

She is in good spirits today and between visits from family, showering, PT, and talking the surgeon, she had been up for several hours when I spoke with her, which means she probably had a better night's sleep last night. She was pleasantly surprised that somehow she ended up in a private room, so I am hoping she'll get a good night's sleep tonight.

Laura has also asked me to reach out to Morgan Prust and Carol Franklin to make sure they have received updates about her surgery. Morgan and Carol - if you are reading these updates, please send me a quick reply to let me know.  If anyone else on the forum knows either of them, can you please ask them to log on and send a quick note?  Laura would really appreciate it.

Hope everyone has a good night!

Best,
Barbara

[Kaybo]

Barbara~
Thanks for all the reports!  Could she try drinking some Ensure so that she is at least getting some nutrients - you can just suck it up thru a straw...

K

[leapyrtwins]

Barbara -

thanks for the update.   I can imagine that Laura is in good spirits - just the shower alone is enough to do that for you post op 

Regarding Laura's concern about leaving the hospital too soon - she definitely should discuss this with her doctor.  Doctors usually make sure they and their patients are on the same page about stuff like this.  If Laura truly feels she's not ready, I can't imagine her doctor disagreeing with her - unless he has some very good reasons.  There are certain benchmarks that a doctor looks for before releasing a patient - even if it's to an acute care facility - as opposed to her home.

I spent one more night in the hospital than my insurance company was in favor of and they originally told me they wouldn't pay for the extra day.  But after my doctor explained the need to them they backed down.  I hate to be negative, but insurance companies aren't in business to always do what is best for a patient - they are in business to make money.  If there is a legitimate reason (or reasons) to not move Laura her insurance company should pay for the additional time.  It may take some additional information from her doctor, but she should win this "battle".

Jan 

[NancyMc]

Please advocate that her next move be to her own home.  She deserves to stay n that single room until she is able to take care of most of her own needs.  She is immuno-suppressed and will be exposed to unwelcome toxins in a new facility.  The neuro floors are less likely to be contagious.
Please tell her Nancy sends her well wishes.

[CFranklin]

I finally found the postings regarding Laura's surgery, and it's all very, very good news.  Please let Laura know that I have read all of the updates.  It sounds like she's handling everything very well and that she is coming along fine.  I think about her every day and knew from our conversations that she has the right attitude and disposition for handling this type of surgery.  Continued good wishes to you, Laura. 

Carol Franklin

[BarbaraS]

Hi everyone -

Here are today's (4/19) updates on Laura's progress:

 - She is still awaiting the results from her latest MRI
 - Her blood sugar is back to normal now (she's off insulin)
 - The nausea is better - she only needed to take anti-nausea meds once today
 - She's still not eating much, so she was going to have Ensure (or some other similar supplement) with dinner
 - She had one dose of IV iron last night, but then was able to have a transfusion of her previously donated blood - and her blood levels looked good today
 - She was able to get out of bed a few times today to walk to the bathroom (with the aid of a walker)
 - She has a little more feeling in her tongue today and her speech/pronunciation sounded better
 - She's still experiencing double vision

She said she felt very tired and slept a lot today, probably due in part to how long she was up yesterday, combined with a poor night's sleep (and of course, the fact that she just had surgery less than a week ago! ) She was in a bit of pain last night and could not get comfortable.  She was finally able to get some sleep after some pain meds, but she was definitely feeling the effects today.  She was a little surprised at how tired she felt, as she thought the blood transfusion would give her a little boost a energy. I am hoping she'll have a better night's sleep tonight.
 
Her surgeon is going to evaluate her progress tomorrow, and she plans to discuss her concerns with him about being discharged too soon or being moved to an acute care facility before going home.  She is also going to follow up with him about the MRI, the continued double vision, and the facial numbness.

She told me to tell all of you how thankful she is for this forum.  Aside from all the incredible support she has gotten (and continues to receive), she feels that she was much more emotionally prepared for the surgery because she knew what to expect.  She said that without everything she has learned from all of you, she might have been freaking out about the post op effects like the numbness and double vision, etc.

Brenda - I told Laura you would be unable to visit because you had come down with a cold - she says she hopes you feel better soon!  Jan and Nancy - thanks for the advice on not letting them discharge her too soon - I passed your comments on to Laura and she is going to stress that to her surgeon tomorrow.

Have a good night!
Barbara

[sgerrard]

Barbara,

When my dad had hip replacement surgery, about the third day his knee swelled up. The physical therapist said "uh oh", since he wouldn't be able to walk around enough to show that he was okay, and said they will move him to an acute care facility across the street. I think it just means that you are medically okay from the surgery, and just need a little more time under supervision before going home (so get out of our precious hospital bed).

In my dad's case, the doctor came in, stuck a needle in his knee, drew out all the fluid, and said "no problem." Dad started walking around, and came home the next day.

I'm glad to hear she is making progress on all fronts. Recovery speeds do vary, and it is not a race. She will be home soon one way or another.

Steve

[mprust]

Hi Barbara,

My name is Morgan Prust, and I'm just now finding this discussion thread after a period of searching. I've been doing the Willing to Talk list with the ANA for the past several months, but this is my first time on the discussion forum and it's taken me a bit of time to figure it out and to find the thread about Laura's surgery. Needless to say, I was so relieved to find it and to hear that Laura's surgery went well. Please send her a big hug from me when you see her and let her know that I've been thinking of her everyday. I'm just getting caught up on all of the information that you've so thoughtfully been sharing over the past days, and it sounds like she's doing really well and toughing through this as well as one can. Having gone through this myself, I know how tough the recovery is from surgery, and it sounds like she's in the best mindset, going with the flow but staying alert about what's going on around her. What's been the resolution about when she'll go home? I'm sorry to hear about the BAHA situation. Thank you again for keeping us all posted, and as I said, please let Laura know that she's been very much in my thoughts.

Very sincerely,

Morgan

[sgerrard]

Morgan Prust and Carol Franklin,

I was glad to see that you both responded to Barbara's request. I would like to invite you both to join in the forum discussions if you wish, we would be happy to have you.

Caring people are always welcome.

Steve

[mprust]

Hi Steve,

Absolutely. I'm slightly new to the discussion forum format, but am glad to be getting involved and to be getting updates on Laura's recovery. Thanks for welcoming us!

Morgan

[moe]

Barbara,
Thanks for another thorough update on Laura. Sounds like she is hanging in there, and taking baby steps toward recovery. Sorry to hear about the need of an Iron transfusion.
Good thing she donated her own blood
I'm sure things will continue to get slowly better and she'll be out of there to hopefully an assisted type place until she is ready to go homeand welcome to Morgan.
Hi Morgan and welcome!
Maureen

[Rich56]

Hi Barbara,

Thank you so much for such wonderful updates.

We've been following Laura's progress and are so glad she is approaching discharge, however not till she's ready, and that she is staying in good spirits.  Hopefully the Doctors will keep her where she is until they collectively agree it's time.

Keeping her in our thoughts,

Rich & Scarlett

[BarbaraS]

Hi everyone -

Here are today's (4/20) updates on Laura's progress:

 - She had a bit of a bad today. It started out okay, but went downhill from there.
 - She's still having double vision. She had OT this morning, and the therapist made her move her eyes (up/down, side to side) repeatedly, so, of course, she developed a pretty bad headache that has plagued her all day.
 - She was able to take a short walk down the hall this morning with a walker; however, shortly after returning to her room, she vomited, and then had severe nausea for hours afterwards. They gave her an anti-nausea patch (one of the ones that goes behind the ear), but that did not work, and after she became sick again in the afternoon, they gave her some oral anti-nausea meds, which finally seemed to help.
 - Because of the nausea, she has not eaten since early this morning.  No one brought her any lunch or dinner, so I was wondering if they did that because she was getting sick? If they did, no one said anything to her - and when I spoke with her, she was feeling a little hungry (and hadn't been nauseated for a few hours), so I suggested that she ask for something to eat - or for some kind of nutritional supplement, at least.  I am a little concerned that she's not getting enough nutrition. She has barely eaten the last few days, and while they have been giving her supplements, the lack of food must be contributing somehow to her weakness and extreme fatigue.  Or am I overreacting? She has mentioned that even if she's not that hungry, she knows she should still try to eat something, so I know this is on her mind, as well.
 - She spoke with her surgeons this morning, who told her that the MRI showed that they got almost all of the tumor; there is only a very small piece left.
 - She also discussed her discharge situation with them, and they indicated that she would be able to move to a rehab facility tomorrow. There is a rehab unit in the hospital, and she stressed to them that she wanted to go there and not to an outside facility, and she thinks they will let her do that.  (And when they told her that she would undergo rehab for 3 hours a day, she said she was exhausted just thinking about it! )
 - When she asked about the side effects (nausea, double vision), her docs told her those were common side effects given the size and location of her tumor. They told her that the more she got up and walked around, the more her eyes would adjust. And they told her that the facial numbness takes time, which, of course, she already knew.

After the day she had today, she is concerned that she will not be ready to be transferred to rehab tomorrow.  I told her to see how she felt tomorrow, and if she felt strongly that she was not ready, that she needed to stress that to the docs. 

Today was the first day I could sense her frustration with her recovery. She feels like her progress has stalled a bit, and she said she just wanted to know when she would start feeling better.  She is tired of the nausea/vomiting, the double vision, and the exhaustion. She wants to get out of bed and start moving around, but was disheartened over how sick she became after her short walk down the hall this morning. She said she really expected to be feeling better at this point, especially since so many others on the forum had shorter hospital stays, faster progress, etc. I told her that everyone recovers at their own pace, and that she just needs to focus on herself. She always has such a great attitude - I hate that she's feeling down. It's understandable, of course, and I know every process has its ups and downs, but it still makes me feel bad.

I share all of your comments with her every day, so any advice or words of support anyone has to help her get over this bump would be greatly appreciated.

Thanks, and have a good night,
Barbara

[moe]

Poor thing, I feel for her
Maybe recommend taking the anti nausea pill repeatedly throughout the day since it seemed to help. Then she can hopefully get up and walk more.
And ask for crackers, seven up, along with the calorie drink. They actually are like a whole meal.
Things should get a little easier each day. Baby steps.
Keep truckn, Laura
Maureen