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

good thoughts

Dr. Akins (mom’s doctor) came by today (Wednesday, July 30, 2008), to give us an update on mom’s condition. So, here it goes. From a neurological standpoint she is the same to slightly better than yesterday. She is doing some communication with her eyes and is moving her left arm. At this point we still do not know the outcome but he did say that anything is possible. However, he said that if there were no hope that they would not continue working so hard to save her.

They are going to continue with the angiogram steroid treatments daily. Yesterday, (the 29th of July) they applied treatment to all three arties and are planning to do the same today. Dr. Akins did say that at some point the blood and vessels will calm down and stop spaziming, until then they will continue this treatment. We were told that the average patient has this spaziming anywhere from 4 to 14 days but that she is “NOT the average patient”.

Also, blood brings oxygen to the brain and she is a little anemic so they are going to start giving her a transfusion of a couple pints of blood. They want to keep as much oxygen as possible in the brain so they will watch closely and make sure she is getting enough but not too much blood.

I waited long enough to post this that I now have a report for today. Dr. Amar did the steroid treatment today (July 30, 2008) and she is now back in the room and doing fine. He pointed out that today is 9 days since her last and largest bleed (it happened Monday, July 21st) and that typically they have 12 days (again they noted that she is not a typical patient) where the vessels are actively spaziming. So, the good news is that her arteries have not gotten worse and are actually looking a little better in some areas, still not in others, but overall she is looking a little better internally. They will do the procedure again tomorrow and will keep treating her as she is slowly healing. The road will still be long and bumpy but when you look at it as 9 days, versus day by day, she is really doing so much better.

Please know that we do appreciate all that you are doing to pray for her and our family. Your love and acknowledgement means so much to all of us. Also, if you have any photos that you would like me to add to her book please e-mail them to me christienoelle@yahoo.com or you can mail them to my home address- if you e-mail me then I will give you my address. (Notes or cards are welcome too)

Note: She still has the breathing tube which is placed between her vocal chords therefore she can not talk at this time. This does not mean that she will be unable to speak; we still don’t know that. Also, she is still in the critical care unit and is still critical. These daily milestones are some indication of improvement but she is not out of the woods yet.