tandragetsbetter

[tandragetsbetter]

Can't believe two days ago she had brain surgery. She's had tons of rest today and time on the beach was amazing. I can't imagine a better place to rest and recover. Thanks Taj and Kathryn (and the rest of the crew).

[tandragetsbetter]

Quick update...

Tandra is doing really well. Unfortunately they didn't have a room for her last night in the ICU so she spent the night in Recovery and it was a little less than ideal (noisy and bright).

The good news is that they have dropped her "need ICU" status so they will be looking for a normal room for her today. I just brought her a bagel and cup of fruit and she was sitting up in a chair next to her bed. She's feeling a little dizzy this morning but they are able to manage her pain pretty well.

I will keep sending details as I know them!

[tandragetsbetter]

We made it! Almost two hours late to begin the surgery. And now this is my view from the waiting room at NY Presbyterian. The procedure is said to take up to four hours so I guess we’re a little over halfway!

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All done for now! 

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Doctors are going to discharge her this afternoon! Probably in the next 2-3 hours. Sweet.

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Tandra was able to visit with the doctor this morning and here are some of the things he mentioned:

There was a lot of scar tissue from the previous procedure, and some of it was attached to the dura itself. There was no way to separate it so they had to cut it out away from the dura and then patch the dura in those places.

He said that she really needed the duraplasty as it will really relieve much of the pressure! It seems the previous surgeon took too much bone out so they made a titanium plank a bit larger and used the plank to reattach the muscle and keep scar tissue from coming back.

Tandra’s finger tips and hands are not numb anymore, she isn’t having swallowing problems and is no longer aspirating when she swallows liquids

[tandragetsbetter]

Recovery Room

I finally made it back to see her. She feels really well compared to the last time we did this. No nausea to speak of and they began pain meds before she snapped to so for now all is about as well as it can be. She’s still in the recovery room and is waiting on her ICU room to open up!

[tandragetsbetter]

So Far So Good!

I just spoke to the doctor and he said that everything went just according to plan. He was able to remove all of the scar tissue from the previous operation which was the culprit for many of Tandra’s current symptoms. He also inserted a titanium plate into the back of her head so that muscles in that area would have something to attach to and that would also help with further buildup of scar tissue. The Family will be sending me a list “techy” questions to ask the doctor and there will be many more details that I will write about soon!

Like most things in New York City the recovery rooms are backed up and we will have to wait for a room to open up before I can go in and see her. But we’re happy about this news and as soon as I see her and know more about all of it I will post another update! Thank you all for EVERYTHING!

[tandragetsbetter]

Recovery Room

I finally made it back to see her. She feels really well compared to the last time we did this. No nausea to speak of and they began pain meds before she snapped to so for now all is about as well as it can be. She's still in the recovery room and is waiting on her ICU room to open up!

[tandragetsbetter]

So Far So Good!

I just spoke to the doctor and he said that everything went just according to plan. He was able to remove all of the scar tissue from the previous operation which was the culprit for many of Tandra’s current symptoms. He also inserted a titanium plate into the back of her head so that muscles in that area would have something to attach to and that would also help with further buildup of scar tissue. The Family will be sending me a list “techy” questions to ask the doctor and there will be many more details that I will write about soon!

Like most things in New York City the recovery rooms are backed up and we will have to wait for a room to open up before I can go in and see her.  But we’re happy about this news and as soon as I see her and know more about all of it I will post another update! Thank you all for EVERYTHING! 

[tandragetsbetter]

We made it! Almost two hours late to begin the surgery. And now this is my view from the waiting room at NY Presbyterian. The procedure is said to take up to four hours so I guess we're a little over halfway!

[tandragetsbetter]

Let’s Try This Again

Hello everyone! I’m sorry for taking so long to update. There has been a lot that has happened since Tandra’s surgery in November. For two months Tandra felt great! We were a little shocked at how easy the recovery was. But in February she started having severe headaches. Some were so bad she felt she was “going to die.” We figured out what would trigger them and tried to avoid doing those things but some were simply not avoidable (like coughing or sneezing). Her symptoms progressed from severe headaches... severe Central Sleep Apnea, numbness in finger tips, difficulty swallowing, loss of balance, and dizziness. 

The Neurosurgeon was basically clueless and said there was nothing he could do and referred her to a neurologist to get on pain meds to manage the pain. If you know Tandra you will know that pain meds just won’t work as a long term solution. She’s pretty high-energy and gets pretty bummed out when she’s feeling doped up for any length of time. So, the neurologist put her on an anti-seizure medicine that helps with migraines. Though she is not having migraines, her intracranial pressure headaches have been significantly reduced.

She was not going to accept The Dr.'s answer "there is nothing we can do" She began her research and found a Chiari Specialist in NY that is one of the best in the US. He was very helpful and gave us hope. He told us she has Chiari 1.5 which is an advanced form of Chiari 1. This is where the brain comes down further then it should along with the brain stem. This can cause symptoms to become worse after surgery. He said that Chiari 1.5 patients commonly need to have multiple surgeries. The new pain is from scar tissue that is putting pressure on her cerebellum. They need to open up the dura and put a patch in to make more room for cerebral spinal fluid flow, clean out the scar tissue, and put in a small titanium plank to keep that space open for the spinal fluid. 

His main concern is the sleep apnea. The compression on her brain stem is worse now than before the surgery and is what is causing the sleep apnea, swallowing problems, and balance issues. There is a chance this will not take the pressure off the brainstem and she will have to have a third surgery on the Odontoid bone. Her surgery is scheduled for September 6th. She will hopefully be in ICU for one to two days and in hospital for three to five days. She will need to stay two weeks in NY. I will be there for the first half and her sister, Haley will come for the second half. We have some really neat friends that live in NY and have been so great to offer us to stay with them while she recovers.

A lot of you have been asking how you can help. Tandra’s sister in law, Stephanie Swan, set up a Meal Train for us for after the surgery. The family has set up a PayPal account that you can donate to that will help with things like meals and house cleaning. (Please contact us or leave a comment if you are interested in donating)

Thank you guys for all of your love and support this past year as we’re traveling through this. YOU are some of the best humans on this planet. :) 

[tandragetsbetter]

Staples day!

Hey everyone, just a small update today. Tandra is getting her staples taken out and is very excited about it. She is still recovering very well and she has even started slowly doing some homeschool lessons with the boys. 

My daughter Cyan has really latched onto me in the absence of Tandra’s normal mom availability. It’s been tons of fun. :) We have plans to put up our Christmas tree tonight. I’m actually quite jealous of Tandra who will just have to kick back on the couch and watch the tree come to life! 

Also, I have to thank Hillary (Tandra’s sister) who has been working tirelessly to make sure that everything gets done for our little family. She’s been amazing! 

I hope everyone is staying warm and enjoying time with family and friends over the holidays. And once again, THANK YOU for all the support over these past few weeks. 

[tandragetsbetter]

A quite weekend alone...

...for my oldest son Addison and I. I was sick a second time this month. When you have a family of 6 it’s difficult to stop the spread and when it rains it pours. So in an effort to contain the spread Tandra and the other kiddos vacated to her moms house for several days. Since Hilary (Tandra’s sister) is in town for a while to lend a hand, Tandra was in very good hands at her moms house. 

The recovery is going VERY well. Tandra is almost totally off her pain medication. She is still taking the muscle relaxers because, well because they cut a big hole in the back of her neck and its still quite sore and she has limited movement.

If you know Tandra at all you will know that she doesn’t do well with rest and relaxation. She’s a go getter! So this past weekend she was able to get out and about the town for a couple hours to combat the cabin fever. 

I wanted to thank everyone who has brought meals. You can’t even imagine how much of a help that has been! With a family of six dinner is often one of the most labor intensive times of our day. You guys are amazing!!!

Please don’t hesitate at all to reach out here or on Timesuck, I... I mean Facebook, if you have any questions. Tandra should return to the doctor soon for a follow up and we will post that report here!

Much LOVE 

[tandragetsbetter]

Coming home!

Hey everyone!

Tandra is coming home in a couple of hours. I think we're ready for the next phase of this journey. The recovery process takes around six weeks. 😵 Six weeks of no lifting, no laundry, no nada. Which will probably be a good thing for Tandra. She does too much anyway. 😜 But... that means I'll have to step it up and bring my A Game to keep it all running.

Quite a few people have been asking how they can help. We'd love help with meals. That would be huge. Feeding six people three times a day is no small task. There is a signup calendar here. Cooking not your thing? It’s ok. there is plenty of laundry and cleaning to do as well. Or dishes. Yep, dishes will pile up!! Less so after last night because someone dropped off a couple months worth of paper plates and plastic dinnerware. This is a good reason to not be green for a while right? ¯\_(ツ)_/¯

Updates to this site will be less frequent but we will certainly keep posting here as the recovery progresses. So when you think about us and wonder how we’re doing you can always come visit here or just give Tandra a call since she will be sitting around doing nothing for the next 6 week. ;)

Thanks for everything so far everyone. It would have been really, difficult to go this alone.

Love. The Peters

[tandragetsbetter]

Coming home!

Hey everyone. I wanted to give you an update on how Tandra is doing since our last post. Overall she is doing really, really well. Yesterday she was able to move around much better and is even walking some on her own. The doctors have removed the drain from the incision. Several people sent me pictures to post but I just couldn’t do it. If you are that kind of person just leave a comment on this post and I’ll get a photo to you.

Tandra told me that she went for quite a while without pain meds yesterday but it just became too much and once she took more the pain was under control. Oh, she’s taking oral meds now which is a great step!

She is out of ICU and into a normal room for today. The best news is that she is clear to go home but we’re still deciding when the best time to come home will be. Hospital rest with trained nurses and tons of quiet time can be really helpful but we sure miss her around here as well. We’ll let you know for sure but it will either be today or tomorrow.

Also, if you haven’t seen the links to help with food or donations at the top of the page then I will post them here. We’ve had tons of folks ask when they could bring food so we thought we’d enlist the help of some online software to help manage that! (Nerd).

Meal Train Plus for Tandra Peters and Family

GoFundMe

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Another great day

Hey everyone! Only good news to report this evening. Tandra is in much better spirits today. She is no longer nauseous from the pain meds and was even able to sit up fully this evening. She (with some assistance) was able to take a couple of walks around the ICU. They have removed most of the monitors but she still has several IVs attached. They are saying she will most likely move to a regular hospital room (when available) tomorrow.