Really

[Gerry]

Hi guys. Sorry I haven't been punctual with the updates. Lots has happened...
- the transition to our small town hospital went very well. Lee has a nice bright room, a big window, amazing nurses and her doctor is happy to have her back.
- she has had lots of visitors, flowers, and of course cards from all over the world, which really brightens her day!
- on her second day here, her doc sent her for a CT to check her colitis. (Yes, that has been a parallel, ongoing issue since before her hemorrhage. In recent weeks, it has become more of an issue, as she needs the NG tube out (for a number of reasons) but the GI docs won't put in a PEG tube with her guts all messed up. She hadn't responded to traditional treatment, so they started her on a biologic; this was all in the works before Nov 23). The CT showed her colitis as improving (good) but also revealed a blood clot in her femoral vein (bad). Standard treatment for DVT is anticoagulants... for a number of reasons, that is a bad idea right now, so...
- since then, she has had a temporary IVCF (inferior vena cava filter) installed to catch any clots that decide to migrate.
- They also installed a PICC line so she could heal up a bit... poor kid looks like a pincushion.
- eating is still an issue though; she is increasingly able to swallow, but she doesn't want to eat. 2 bites of her favourite foods and she stops. Things don't taste good, she doesn't feel hungry, she says she is nauseous.
- she is going for gastroscopy today to make sure there is no physical issue, but this is a problem we have to solve in order to get into therapy.

The journey is still only beginning, I think. I've felt comfortable enough to sneak away for a few days to re-engage in my work; her care staff and friends are making sure she is ok, and I need the change of scenery.

Funny, eh? Going off to work, staying in cheap motels, eating greasy fast food is now my idea of 'taking a break'.

Sigh. Anyway, that catches you up to today. Lee is continuing to improve, talks better, is awake more, and is increasingly stable. There are still hurdles to overcome, and miles to go on a journey that seems to have no end, but the rear view mirror shows me how far we have come, and the thoughts, prayers and encouragement of friends gives us the strength to keep pushing through.

We are so grateful for your support.

More to come...

 

[barbarafan]

Hi guys. Sorry I haven't been punctual with the updates. Lots has happened...
- the transition to our small town hospital went very well. Lee has a nice bright room, a big window, amazing nurses and her doctor is happy to have her back.
- she has had lots of visitors, flowers, and of course cards from all over the world, which really brightens her day!
- on her second day here, her doc sent her for a CT to check her colitis. (Yes, that has been a parallel, ongoing issue since before her hemorrhage. In recent weeks, it has become more of an issue, as she needs the NG tube out (for a number of reasons) but the GI docs won't put in a PEG tube with her guts all messed up. She hadn't responded to traditional treatment, so they started her on a biologic; this was all in the works before Nov 23). The CT showed her colitis as improving (good) but also revealed a blood clot in her femoral vein (bad). Standard treatment for DVT is anticoagulants... for a number of reasons, that is a bad idea right now, so...
- since then, she has had a temporary IVCF (inferior vena cava filter) installed to catch any clots that decide to migrate.
- They also installed a PICC line so she could heal up a bit... poor kid looks like a pincushion.
- eating is still an issue though; she is increasingly able to swallow, but she doesn't want to eat. 2 bites of her favourite foods and she stops. Things don't taste good, she doesn't feel hungry, she says she is nauseous.
- she is going for gastroscopy today to make sure there is no physical issue, but this is a problem we have to solve in order to get into therapy.

The journey is still only beginning, I think. I've felt comfortable enough to sneak away for a few days to re-engage in my work; her care staff and friends are making sure she is ok, and I need the change of scenery.

Funny, eh? Going off to work, staying in cheap motels, eating greasy fast food is now my idea of 'taking a break'.

Sigh. Anyway, that catches you up to today. Lee is continuing to improve, talks better, is awake more, and is increasingly stable. There are still hurdles to overcome, and miles to go on a journey that seems to have no end, but the rear view mirror shows me how far we have come, and the thoughts, prayers and encouragement of friends gives us the strength to keep pushing through.

We are so grateful for your support.

More to come...

So glad to hear from you.
Hopefully there is nothing else wrong inside and it is just taking a while for her body to adjust to food going down.
I had a bout with cancer 16 yrs ago with external and internal radiation as well as 2 weeks of chemo. Eating was...shove food in,,swallow..everything tasted like a mouthful of chemicals..I did choke down my favourites but once I was better I could not eat any of the foods I ate while I was sick..I still do not eat them...They still taste like chemicals...not food.

 

[TygerLily]

Thank you for the update. You, Lee, and your family have been in my thoughts a lot.

 

[Gerry]

... I did choke down my favourites but once I was better I could not eat any of the foods I ate while I was sick..I still do not eat them...They still taste like chemicals...not food.

So what you're saying is, I should make her eat all the stuff that she likes that I don't... so I never have to smile and choke it down again? Hehe... good plan, Natasha. Moose and Squirrel will never suspect that.

 

[Garden Kitty]

Sorry she has to deal with these other issues - she certainly has more than enough to handle without these issues. But glad she's continuing to make progress even if it's two steps forward and one step back. I'm sure being closer to home and near her friends is helping.

Thank you for your updates. We know you have a lot going on and understand when you don't have time to post, but we always appreciate the updates when you have a chance. Leigh and all her loved ones remain in my prayers.

 

[Spun Silver]

Thank you for the update, @Gerry. Very glad you are able to take time "off." I cannot tell you how many brain injury spouses I have heard say that going to work is a break.

Lee's other problems must be worrisome, but at least she is being closely monitored close to home. It's a huge step forward even if it doesnt always feel like it. Has she started to walk at all? I know how slow that would be with all her tubes.

There was a long time when my husband had no appetite and later, when he came home, I could not get him to drink anything. No doctors were worried and eventually it all resolved itself, but that kind of thing gives caregivers high blood pressure. Literally. Please do take care of yourself.

Happy Valentine's Day to you two lovebirds!

 

[skatesindreams]

We are here for the long haul, Gerry.
I'm grateful for Lee's progress and glad that she has such careful attention paid to the issues that she has been dealing with for many years.
"Slow and steady", seems ideal in her case!

 

[barbarafan]

So what you're saying is, I should make her eat all the stuff that she likes that I don't... so I never have to smile and choke it down again? Hehe... good plan, Natasha. Moose and Squirrel will never suspect that.

Great plan...proceed ..do not under any circumstance feed her your favourites

 

[Nan]

Sounds like things are slow, but steady. I can't imagine how hard it is to look into the future. Take care of yourself, take what breaks you can, allow yourself a gut-wrenching scream every now and then, it helps.

 

[overedge]

Thank you for the update, @Gerry . Keeping you all in my thoughts.

 

[skateboy]

Sending good vibes and energies your way.

 

[Finnice]

Thank yoi for the update, Gerry! My warmest thoughts to her and all the family. Which is her postal address now?

 

[4rkidz]

Thanks for the updates @Gerry , take care of yourself An take a break too.. sounds like a good support team. I remember when all my dad would eat was rice pudding An drink strawberry ensure.

 

[Aceon6]

@Gerry In thinking back, DH didn't care to eat for a long while after they took him off all ICU meds. His step down unit nurse said that it was fairly common. I don't recall him having a full meal for months after. Maybe @Kasey or one of our MDs knows why.

 

[Lizziebeth]

Gerry, thanks for the updates. I will be thinking of your family and hope things continue to improved day by day.

 

[JasperBoy]

Gerry, I have been lurking in this thread and following Lee's amazing progress and your devotion to her. I would like to make a suggestion of something that might interest Lee and pique her appetite.
Whenever my mother was in hospital I would buy a fresh fruit salad from the grocery store and take it to her. I usually cut the pieces smaller, about the size of a sugar cube. Watermelon and orange slices were popular. The freshness and juiciness of the fruit was a real treat for her. I hope they are of interest to lee as well.
Keep on keeping on.
From another Rocky and Bullwinkle fan....Boris and Natasha, too.

 

[kwanfan1818]

Natasha was my idol growing up.

I hope @JasperBoy 's suggestion helps.

 

[Simone411]

Hi guys. Sorry I haven't been punctual with the updates. Lots has happened...
- the transition to our small town hospital went very well. Lee has a nice bright room, a big window, amazing nurses and her doctor is happy to have her back.
- she has had lots of visitors, flowers, and of course cards from all over the world, which really brightens her day!
- on her second day here, her doc sent her for a CT to check her colitis. (Yes, that has been a parallel, ongoing issue since before her hemorrhage. In recent weeks, it has become more of an issue, as she needs the NG tube out (for a number of reasons) but the GI docs won't put in a PEG tube with her guts all messed up. She hadn't responded to traditional treatment, so they started her on a biologic; this was all in the works before Nov 23). The CT showed her colitis as improving (good) but also revealed a blood clot in her femoral vein (bad). Standard treatment for DVT is anticoagulants... for a number of reasons, that is a bad idea right now, so...
- since then, she has had a temporary IVCF (inferior vena cava filter) installed to catch any clots that decide to migrate.
- They also installed a PICC line so she could heal up a bit... poor kid looks like a pincushion.
- eating is still an issue though; she is increasingly able to swallow, but she doesn't want to eat. 2 bites of her favourite foods and she stops. Things don't taste good, she doesn't feel hungry, she says she is nauseous.
- she is going for gastroscopy today to make sure there is no physical issue, but this is a problem we have to solve in order to get into therapy.

The journey is still only beginning, I think. I've felt comfortable enough to sneak away for a few days to re-engage in my work; her care staff and friends are making sure she is ok, and I need the change of scenery.

Funny, eh? Going off to work, staying in cheap motels, eating greasy fast food is now my idea of 'taking a break'.

Sigh. Anyway, that catches you up to today. Lee is continuing to improve, talks better, is awake more, and is increasingly stable. There are still hurdles to overcome, and miles to go on a journey that seems to have no end, but the rear view mirror shows me how far we have come, and the thoughts, prayers and encouragement of friends gives us the strength to keep pushing through.

We are so grateful for your support.

More to come...

Thank you so much, Gerry. Just to let you know that I had an IVC filter inserted in me at the same time a PICC line was inserted into my arm. This was when I was still in ICU in April of 2011. I had been in an induced coma for over two weeks before they brought me out of it. Three days later I acquired DVT in my right leg. It was an extreme blood clot, so my doctors decided to put me on Coumadin and insert the IVC filter since the blood clot was so huge.

That was in April of 2011. In March of 2012, they did an ultrasound on my leg, and the blood clot was gone. It was explained to me that the blood clot was too big for the Coumadin (blood thinner) to have dissolved. The blood clot did break loose and the IVC filter caught it and busted it up. The IVC filter saved my life.

I still have the IVC filter in me and it's never caused any problems. My doctor still wants me to keep mine because there's a possibility with my situation that I could get another blood clot. My doctor also has me take an 81 MG aspirin a day since I was able to get off the Coumadin. I was able to stop taking the Coumadin because of the fact I have the IVC filter.

I just wanted you to know that the IVC filter I have is safe and hasn't caused any problems whatsoever and probably never will. It actually saved my life a second time.

Still keeping you and Lee in my thoughts and prayers. <3

 

[Mozart]

@Gerry great news! I'm on Remicade (it has been two years) for crohn's since diagnosis and it has been fairly helpful. I also had a PICC during a lengthy hospitalization (I was on TPN) and it really helped a lot. No more painful IV pokes! Good luck

 

[Gerry]

Thank yoi for the update, Gerry! My warmest thoughts to her and all the family. Which is her postal address now?

Might as well continue to use the Cards_4_Lee address.. her school is just down the road 20 miles or so, and her colleagues are always dropping in to visit her. They like bringing her cards from all over...

 

[Gerry]

Thank you so much, Gerry. Just to let you know that I had an IVC filter inserted in me at the same time a PICC line was inserted into my arm. This was when I was still in ICU in April of 2011. I had been in an induced coma for over two weeks before they brought me out of it. Three days later I acquired DVT in my right leg. It was an extreme blood clot, so my doctors decided to put me on Coumadin and insert the IVC filter since the blood clot was so huge.

That was in April of 2011. In March of 2012, they did an ultrasound on my leg, and the blood clot was gone. It was explained to me that the blood clot was too big for the Coumadin (blood thinner) to have dissolved. The blood clot did break loose and the IVC filter caught it and busted it up. The IVC filter saved my life.

I still have the IVC filter in me and it's never caused any problems. My doctor still wants me to keep mine because there's a possibility with my situation that I could get another blood clot. My doctor also has me take an 81 MG aspirin a day since I was able to get off the Coumadin. I was able to stop taking the Coumadin because of the fact I have the IVC filter.

I just wanted you to know that the IVC filter I have is safe and hasn't caused any problems whatsoever and probably never will. It actually saved my life a second time.

Still keeping you and Lee in my thoughts and prayers. <3

Thank you for this; I worried a bit about the IVCF, but it seemed like the right decision.

 

[Gerry]

Gerry, I have been lurking in this thread and following Lee's amazing progress and your devotion to her. I would like to make a suggestion of something that might interest Lee and pique her appetite.
Whenever my mother was in hospital I would buy a fresh fruit salad from the grocery store and take it to her. I usually cut the pieces smaller, about the size of a sugar cube. Watermelon and orange slices were popular. The freshness and juiciness of the fruit was a real treat for her. I hope they are of interest to lee as well.
Keep on keeping on.
From another Rocky and Bullwinkle fan....Boris and Natasha, too.

Thank you! I will try that!

 

[Simone411]

Thank you for this; I worried a bit about the IVCF, but it seemed like the right decision.

I had worried about mine at first after seeing all those lawyer commercials. Believe me, they more or less are after money. My primary doctor discussed this with me again recently. I also managed to find out who the doctor was that inserted the IVC filter below my diaphragm. They both told me that the IVC filter I have won't corrode, and it's safe to leave it alone. That's why the filter is still okay, and in April, I will have had it for 6 years.

 

[Spun Silver]

I know Lee's condition is not caused by a traumatic brain injury but the effects and recovery seem quite similar. To give you hope, and also to show those unaware what you and she are going through, here is a profound video. No words, just a soundtrack: Coldplay's Fix You (so fitting! and I never made the connection!) and then You're an Overcomer.
https://www.youtube.com/watch?v=FhN_ecptyGc

 

[purple skates]

Thank you for this; I worried a bit about the IVCF, but it seemed like the right decision.

My father has had one of those filters in place for years. I'm thinking at least 7 or 8. He was allergic to the Coumadin.

 

[Aceon6]

Wow, we've hit 1000 posts. Time for a new thread.