one step up, another step back

I was hoping to be posting really great news about seeing mom in Vallejo tonight, however, I am not. Poor mom had a minor setback today and is going to have to stay in Sacramento for a few more days. She is super bummed about it and so are we but they just need to make sure everything is okay before they send her out the doors.
I guess what happened is this morning she was doing just fine. She was talking to my dad and everything was good. I am not exactly sure at this point what happened but maybe she took a nap and when she woke she was toying with some tape. When dad asked her about it she said "Who are you?" or something like that and he then asked her if she knew who she was; again she didn't. The nurses were called in who immediately got a hold of the doctors. The ran a bunch of tests including a new MRI to see if she had another episode (seizure, low blood sugar, stroke anything). I don't know if they don't know the results or just haven't really said anything but so far it looks like everything is okay. She stayed in this state for about an hour and a half and then just as quickly as it came on she was back to normal.
I spoke with her a few times tonight and although she is sad she loved talking to Kobe and hearing him sing to her. So basically, there was something that hopefully is nothing that I really don't know too much about :(
Thanks again for all of your well wishes. We love hearing from you and appreciate you all. I will post more as I hear...

it's extraordinary, really!

Sorry about the lack of postings, I guess sometimes life catches up...

Anyway, superb news...

So, yes, she was transferred to E- Wing which is on the first floor at the hospital in Sacramento. They got her standing again and she's getting so much stronger everyday. Also, she is able to scoot herself off of the bed and into the chair- seriously amazing. Previous to this they would lift her into and out of the chair and now she's doing it on her own.

Are you ready for more good news?

She is being transferred to Vallejo Rehabilitation most likely tomorrow. This is incredible because it means it's nearing the end of her hospitalization. They are anticipating her being there for 4 to 6 weeks. This is a HUGE step for my mom. It is here where she will learn how to do everything again and really work those muscles. She will have intense physical therapy for three hours per day.

The best news about all of this is that mom is actually proud of herself for what she has accomplished. She is very excited about this next step and is super excited to start working hard and getting herself better. She asked me to thank everybody for your support and loves hearing everyone who is writing and asking about her on a daily basis. She sometimes asks me to read her the e-mails and notes, or will just ask "So, who's contacted me today?" This is really nice and she remembers everyone so far. Even those notes from her old classmates who say "I don't know if you'll remember me or not..." and she says of course I remember.

Fantastic news!

Note: I know everyone is thinking, woohoo we can come and visit and I believe that is the case but we need to be careful as to not overwhelm her. So once I find out the visitation schedule I will let you know. Also, I will let you know when she actually is transferred. It seems that we are always told oh it'll be today but like everything else even to get a room ready for her downstairs in Sacramento took like 4 days. Yippee, even more progress!!!!

super duper...

So I got word today from Gigi that physical therapy came today and mom was able to stand up (with help of course) for about a minute. They have tried this a few times before and she just couldn't so this is really super. Go Mom!!! We are all so proud of you.

Also, the doctor said she is ready for rehab. I think they will be transferring her very soon. She should also be transferred downstairs maybe even tonight, I will let you know. This is all going very fast! I am super excited...

chemo is aweful...

I am finally getting a bit of a preview of what people go through who go through chemo and it is very sad. My heart goes out to each of you. I understand that the chemo my mom gets is not even as bad as what cancer patients endure and that makes me ache for cancer victims even more. I have explained to mom why she is getting the chemo and so she continues to fight but she is very sad and not feeling too good. It is incredible to me that something so toxic can do wonders for those who endure it.
On the other hand though, this evening her spirits were up a bit and she is really wanting to do as much physical therapy as possible so she can get to rehab and get home. Even with all of the pain and sadness though she is continually an amazement to us all including the doctors and nurses. Oh and sadness is very typical of neuro patients I am told.

mistake

Some information, updates and corrections:

• First, today has been one month from mom's last bleed so that is awesome
• Chemo was NOT started on Monday, it was actually started yesterday 8/22
• She still has not been transferred out of the Critical Care Unit as anticipated
• Contrary to what the doctors thought it seems that all the main parts of the brain that were affected are not causing mom too many problems- mainly speech, vision, hearing and memory
• We found out that rehabilitation will be in Vallejo (still no transfer date yet)
• Rehab will last 4 to 6 weeks

So how is mom doing?

• She is very sad and in a lot of physical and emotional pain
• She is trying to be brave and is still fighting very hard
• She is communicating and her voice sounds just the same :)
• She is getting stronger every day
• She still has a long bumpy road a head of her but this past week has been AMAZING
• She is a miracle in the works, how fortunate we are to be a part of her life!

Gigi and dad have been holding down the fort since Amie and I have to be to work during the day. What troopers, I appreciate them so much. Thank you to everyone for everything- we are so blessed to have you in our lives.

A side note: Kobe started first grade- I just can't believe how BIG he is getting. He sure loves his Gram and is constantly worried about her, like the rest of us. He has been able to talk to her a few times and I think that helps both of them to stay strong. They truly are an anchor to one another.

Kobe loves this picture- it is when Gram first saw his haircut from shaggy to spikes and is so surprised at how much older he looked.

a big day

Sorry, it seems like I just can't get off the computer today but I promised I would keep everyone updated.

She got her tracheotomy out today!

it's been a month

I know it is a necessary step but I am sad to report that today they will begin round two of chemo. She will get this treatment once a month for six months.
Remember though "that for some forms of vasculitis that do not respond to steroids (prednisone) alone, cyclophosphamide (Cytoxan) may be a life–saving medicine.
More good news is to realize that today is the one month anniversary of when she was admitted to Sacramento Kaiser. It is quite a miracle that we have come this far and that her brain is functioning so much (well more than what "they" thought). Mom is strong, she'll keep showing them. That is just like her, when someone says its impossible or tells her its not going to happen that is when she steps up to the plate and shows them just how wrong they can be! Go mom!!!

a note for Christine who's dad is fighting a similar disease (vasculitis that is attacking the organs rather than the brain):
For example, before the introduction of cyclophosphamide in the treatment of Wegener’s granulomatosis in the 1970s, Wegener’s was almost invariably a fatal illness, even with high doses of steroids. Now, with the combination of cyclophosphamide and prednisone, more than 90% of Wegener’s patients respond to treatment, and 75% enter a disease remission. so KEEP FIGHTING!!!!
http://vasculitis.med.jhu.edu/treatments/cytoxan.html

TOO SOON

Sorry, I posted too soon before I got an update....

Gigi is with mom today and she just called to tell me some really great news. They replaced mom's trache today and she spoke. When I was there Friday, the speech therapist checked her and her vocal chords were not strong enough to make more than just a few small sounds. Today, they changed a part as she was able to verbalize. Her first words were "Mom, I am in so much pain!" Very sad but also amazing. One main part of the damage in her brain had to do with speech so this is truly a miracle. So you see, we are being blessed with many miracles. It is very sad to see mom in this much pain and to watch her so helpless but we are also very blessed. Thank you all for your support! Keep praying, our united prayers are being heard.

fund info

First, Thank you to all of you who have donated to the Tammy Larson Fund. The support has been overwhelming- Thank you from the bottom of our hearts.

Also, it has been brought to my attention that when you go into a Wells Fargo branch that they are having a hard time finding her account. I guess it is considered a business account and that is why they can't find it. So, if you go into a branch let them know that the account is a business account by the name of the Tammy Larson Fund.

I am sorry that I haven't posted too much on mom's condition recently. It is difficult to put into words what is happening now. Physically, mom is doing very well except that she is becoming more aware of her constant pain. Emotionally she is very aware of parts of her body that are not working well and is continually frustrated. Keep praying that we can all get past this portion of her condition.

I hope this helps. Thanks again! We appreciate all of your kindness, thoughts and prayers on our behalf.

I will keep you updated as to when she can have visitors, until then I will try to be better at posting even when I don't have too much info.

How is she doing now?

I have been at the hospital with mom for the last few days and it has really been an experience. She is a tough girl and she has truly been through the ringer. I have liked being able to be with her, and she smiles now which warms my heart. Okay, for the details:
Neurologically speaking she is doing well. We still do not know the damage although her recent CT scan shows that the top of her brain is healing nicely however, there is still a lot of residual damage to the brain stem. Still, we won’t know for a very long time the extent of the damage on her body physically. We learn more every day but for now we are still waiting and slowly working those muscles in her body to compensate.
Physically, she is getting stronger every day. She has a lot of movement from her left arm and leg and is gaining more control with those movements. Her right hand is definitely getting stronger and she can squeeze her hand very tightly now and lift her arm. She is also coughing which is a good sign. The more she coughs the faster she can clear her lungs and possibly start weaning off the trache. The other part of weaning her off is if she can swallow and her neck muscles are definitely getting there. She has a little weakness on the right side of her face (not noticeably when you look at her) which includes part of her tongue which also adds to the difficulty of swallowing (like when you get numbed at the dentist). However, they are testing her swallowing little by little and once she shows them that she’s stronger she’ll be able to get weaned off the trache by making the opening smaller and smaller until they can take it out and close it.
Emotionally, she is becoming more alert each day and this causes quite a bit of frustration. She can feel her pain more because she is more aware of it. Also, she is becoming more aware of the things that are happening to her which is a very scary process. She doesn’t understand everything yet which is also very difficult in knowing that you can’t move and do things right but can’t comprehend why it’s all happening. We continually tell her that she’s had bleeding and that she’s in the hospital and she is definitely aware of that but they want to just gently remind her each day so that she can slowly learn more about her condition. I guess we are all in that same position! They are not trying to fool her about the difficulty and the long process and that also makes it hard emotionally. All in all she is holding up okay. There have been many tears and worries but also plenty of patience and smiling. Waking up and realizing that this is not just an awful nightmare is also very difficult for her. Basically, she is coping as well as can be expected under the circumstances.
As far as surgeries go, she did get our Neuro Drain out so now her head and face are completely clear of any “stuff”. It’s nice being able to see her face! There are no other surgeries in the works now.Chemo starts again next week, let’s hope and pray that the side effects will be tolerable and not give her too much trouble.

new baby...

Congratulations my friends!

a few things...

Mom is having a bit of a hard day today, she's really alert but that means she's in a lot more pain.

Quite a few people have been asking about visiting. While she is in the critical care unit the doctors said we shouldn't have friends visit. However, the good news (well it's good meaning she's doing better- but the care in the CCU is phenomenal!!!) is that there is a chance she'll be moved out of Critical Care in the next two weeks.

On a side note Caleb and Alison are having their baby today! She's in the hospital now working hard to deliver their baby girl. Congrats Unkie K, I am so excited!

Finally, I opened the blog on a different computer, Please let me know if yours is showing up funny. The side bar showed up at the bottom on this one. Interesting!

amazing...

Kobe, Blake and I headed to the hospital today to see mom and Gigi. When I came in they had mom sitting (it's a chair that turns into a bed that they can strap her into but it gets her sitting upright) anyway, it was so good to see her sitting. So the blinds to her window were open quite a bit so Kobe could see her- this was the first time. I was pretty worried about letting him see her because he's only 5 and I didn't want him to be too scared or anything. It was an okay visit, she just had some meds because she's in quite a bit of pain from the trache so she was a little out of it.

Physical Therapy came and worked with her today for the first time which is really great. She had to be stable in order for them to do this so that is a good sign in and of itself. She has lost A LOT of muscle but surprisingly still has quite a bit. Still not too much movement from that right leg but other than that she was doing pretty good. She was exhausted after therapy so they put her back to bed.

They took the ventilator out today since she was basically breathing on her own, they are going to monitor her closely to see how she does. So far today she's doing really great without it. They do have some moist air and a little oxygen just to help her lungs but she's breathing on her own now.

Later in the afternoon after we returned from lunch they put her in the chair again. Gigi and Kobe bought her some new lotion and cherry flavored carmex (Kobe said she would like it better if it was cherry). So as I was lathering her up and talking to her she looked at me and mouthed "I love you". I was surprised because this was the first time I've seen her without the breathing tube in her mouth so I hadn't see her do it. On our way out I let Blake come in to say goodbye and she moved her head closer to him so I brought him to her and she kissed him and told him that she loved him. He just kept looking at her and so she closed her eyes, turned her head and then came back and mouthed "boo!" I could tell that she was really trying to play with him and trying to help him not be so nervous of all the tubes so I asked him to show her what a bear says. Finally, he turned toward her and said "ROAR" and she smiled- not just grinned like before she actually smiled! So I then asked him to to show her his elephant (which is her favorite thing that he does) and she smiled even bigger. It was really great to see!

After I told Kobe about it and he wanted to come in and see her and talk to her some more. So Gigi and Kobe came in and I helped Kobe to give Gram a kiss and she mouthed to him "I love you baby". He began talking to her and telling her that he was going to be in the first grade next week and she shook her head and said "No Way". Kobe can't really read lips so I just told him everything that she was saying and I said she said No way, she just can't believe how big you are getting and she shook her head to let him know that is exactly what she was saying. So then he told her that he can swim without floaties on and she mouthed "Wow" and smiled at him. When they were walking out the door and little Blakey was waving to her she waved back with her right hand.

This is all truly amazing and a huge miracle. It was really so great to see all of this. My dad and Gigi have seen bits and pieces of this but it was the first time that me and the boys got to see it too. Kobe was pretty upset when we left but even though I am worried about him I really think it was good for both of them to see one another. They truly do adore each other.

Sorry for all the run-ons and bad typing I just wanted to quickly update about this great day for all of us.

finally I have news

Okay, Gigi just called to let me know that mom finally made it out of surgery. They were supposed to do it yesterday but it kept getting postponed so she just got wheeled up to her room. Gigi has not yet been able to see her but she peeked in and mom looks good. It's always good news to see her coming back into the room.

Will add more later. I want to thank everyone for their thoughts and prayers. Especially I want to thank our heavenly father for taking such good care of mom. Each passing day that she is progressing is truly a miracle!

some good news

I had a few minutes and figured I'd pass along some good news, I know we can all use it!

I am back at work today and was feeling especially bummed until I got a good call. So this morning mom is very alert. She waved to the nurse, is lifting her head, and as had her eyes wide open for quite a few hours.

If all goes well with the scheduling they are going to do her tracheotomy and g-tube procedure this afternoon.

I will post again when I find out she made it out safe and sound.

What’s happening now?

On, Friday August 1, 2008, I received my last angiogram application of Verapamil. This was stopped because my arteries are getting stronger and having less spasms, as well as, they can only do this for so many days in order to not cause more damage and they have done all that they can do for those particular arteries. So, what now you may ask?
Currently, the doctors are working to remove the neuro-drain from her head. In order to do this they need to raise the pressures in her brain to make sure that she can tolerate the required amount of pressure (20 ICP). If she can tolerate the pressure then they are ready to remove the drain, if not, then they will change the drain to a more permanent system where the body would absorb the cerebrospinal fluid elsewhere.
Also, she is still on the ventilator but breathing on her own. However, they have decided to do a tracheotomy because they are worried that she is going to have problems with mucus and other secretions getting into the windpipe because of difficulty swallowing. She is not awake and conscience enough to cough anything up and swallow correctly. Also, this gives them access if she does end up needing air at any time as well as allows them to still suction her out. Installing the tube will also offer her more comfort (currently it goes through her mouth and she hates it) and the ability to speak at some point. When they do the tracheotomy she will not be able to speak for 10 days until the lining around the incision builds up, otherwise air can come inside and create more problems.
Lastly, they are going to do a gastrostomy in order to install a tube directly into her stomach for feeding. This will eliminate the tube that currently goes through her nose. In time they will test her to see how she can swallow but for now they are trying to save up her extra energy for her to get herself better rather than wasting energy on eating.
She is very tired right now and is spending a lot of time sleeping. There are really no other changes. The doctor says to remember that this road is going to be full of peaks and valleys and that her healing is going to be very slow and will take time. However, she is still doing a little better each day. Thank you for continually keeping her in your thoughts and prayers. We really appreciate all of you!

More to come….

some questions answered

What are they doing to help her in addition to the daily angiograms?

This is a photo on mom’s IV pole not even at its fullest. There are so many intravenous medications that she is given on a daily basis. In addition to regular IV fluids she is getting Magnesium Sulfate to open up collateral circulation and relieve ischaemia (a restriction in blood supply), mannitol, many different antibiotics including Vibramycin, quite a few different vitamins (iron, b12) and on this pole you can see that she is also getting her blood transfusion. This is also where they hang her nourishment for her feeding tube. There are many other things that I just don’t know or understand but you can see that she is getting a multitude of things to try to help her get better.
What is the angiogram steroid?
Okay so I have more information on the daily treatments that mom is getting. The type of spasm that she is having in her arteries is called vasospasm. The treatment that she is getting is an infusion for vasospasm called intra-arterial verapamil. Verapamil is the name of the medicine that is being administered directly into the artery through the angiogram. I know that I explained this but I wanted to give the drug information.

Is the Verapamil working?
Her angiogram is showing that she is still demonstrating spasm but that some parts are slowing and getting stronger. Overall she is not getting worse and hasn’t exhibited any new bleeds. This is good news!

How much is and will she progress?
Each day she is still progressing and getting stronger, however, when you look day to day her progress is slow. That is what they keep telling us is that this is a long road to recovery. Treatment for this condition is long-term and may have significant risks. Many months may need to pass before one can tell what degree of recovery will ultimately occur. We are just relieved to see minimal progress each day, however small- progress is progress in our book.

What is Vasculitis?
Vasculitis (meaning inflammation of the blood vessels) confined to the brain, the spinal cord and its covering is referred to as central nervous system vasculitis. Central nervous system (CNS) vasculitis is a rare disorder. Central nervous system vasculitis can be classified as primary (primary angiitis of the central nervous system or PACNS) when there is no other disease or condition present that may cause blood vessels to be damaged.

Why steroids?
This disease is often treated with a short course of glucocorticoids as well as other drugs such as calcium channel blockers that relax “tight” blood vessels. Such a powerful combination of drugs is used because without them this disease is nearly always fatal. With successful therapy, patients may have partial or complete recovery. Unfortunately, the brain is an organ that has a very limited potential to regenerate itself. Thus, if a patient has experienced a massive stroke, he or she will continue to suffer the deficit of that stroke even if the vasculitis is successfully treated.

What is the neuro drain for?

A ventriculostomy is a tool to measure the pressure in your head called intracranial pressure (ICP). It is important that this ICP was inserted because it helps not only to drain the extra cerebrospinal fluid and excess blood but also measures the pressure in her brain. Keeping the excess fluid out reduces the pressure. Three days a week they are testing the cerebrospinal fluid (CSF) for infection (I am sure they are testing it for other things as well).

http://www.upstate.edu/uhpated/pdf/ventriculostomy.pdf