Wonderful Wednesday

Tuesday, Liz had an appointment with the ENT, whom she has been seeing him for three months, every three weeks. We are trying to figure out the source of her chronic sinus issues.  Each time she goes in he cultures the nasal drainage.  Today was the first time the doctor said the infection looked real. He has a very dry sense of humor.

Depending on what cultures out (if anything) he will give Liz an antibiotic to kill it.  If nothing cultures out, then she will head in for a CT of the sinuses.  He is looking for a “trap” where nothing drains.  When asked what happens if that is the case his reply was you win yourself a ticket to the OR.  It was said so deadpan, it was funny.

Next up after things settle down will be a trip to the allergist and immunologist at Hopkins to make sure her immune system is up and functioning, plus determine if there are any allergies.  Although she has been tested many times and nothing shows up, we know something is there.  We are hoping the doctors at Hopkins can figure it out.  There will also be an rheumetology work-up to rule out things like lupus which can start up in the sinuses.  Who knew.

I have to say with my children I am getting one heck of a medical education in some of the rarer medical conditions.  And to think I didn’t have to go to medical school for it.

Hoping you all have a wonderful day!

Pax Christi!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Sufferin’ with IIH Saturday

Thursday Liz had an appointment with the neurologist to try and get her migraines under control. With Idiopathic Intracranial Hypertension (IIH) migraines can be a part of the condition. However, Liz has been suffering with daily headaches for over a year. Some days she spends the day in bed because the pain is that horrible. The first neurologist she saw, while a “headache” doctor, really had no experience with IIH and we felt like we were wasting time seeing him.

After her hospitalization in December, she was finally able to get an appointment with THE neurologist at Hopkins that deals with IIH. He reviewed all of her records and her headache history. He is not 100 percent sure that her shunt is draining properly. The patency test in December showed the shunt to be drainint at top level of normal, so he was concerned that it might not be draining properly.

He changed one of her medicines back to diamox to see if that helps control the level of spinal fluid and thus the pressure and the headaches. If this doesn’t work, we are looking at another couple of days in the hospital for pressure monitoring (again).  Based on those results, Liz could be looking at surgery (again) in the near future to replace the shunt hardware with something that will provide more control for fluid drainage.

In addition to the medicine change, we are going to try the Low Tyramine Headache Diet to see if there are any food triggers which are contributing to the migraines. Since there is a family history of migraines, he figured this was another tool in the arsenal we should try.

Trying to figure this diet out is going to be very interesting, but it could turn out to be blessing in disguise. Liz cannot have chocolate, caffeine, artificial sweeteners, fresh made yeast products, aged cheeses, any type of processed meats, fermented products, any nitrates/nitrites, limit citrus fruits to 1/2 cup per day, MSG, or Vegemite (THAT one won’t be so hard to avoid). We also need to limit or eliminate as many additives and preservatives as we can.

Overall this where I have been moving the family’s diet anyway, this just gives me the push and motivation to get us totally switched over as soon as I can.

I hope you all have a wonderful rest of your weekend, while I try to figure out a new menu plan for the family which won’t force me to fix an entirely different meal for Liz at every meal.

Pax Christi!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Fantastic Friday

Liz has completed her first semester back at college! Today is the “official” last day of exams, although she completed her exams earlier in the week.

She made some great friends, became involved in one of the service organizations and most of all learned her away around the campus and how to use all the tools that have been provided for her to learn. She figured out how to use her class note takers and test scribes for the greatest benefit. Having people to help out was a totally new experience for her and she had a difficult time at first. The most important thing learned was how to advocate for herself in a positive way to get her needs met. She has grown up and matured so much these past couple of months and her self confidence has really increased.

Looking back on the past two years with everything had she has survived, I have to say we are so blessed to live in Maryland. This state takes a very proactive approach for people who suddenly lose their vision. The state’s Department of Rehabilitation provided Liz with mobility training, teaching her how to safely navigate situations with her white cane so she can move about on her own. They provided training for many personal care type of things like how to set up your closet and dresser so you don’t wind up wearing red and orange (on accident), how to set up your immediate environment so that you can safely move about, and even how to set up medications so you know what you are taking. They also provided tools and training for the kitchen. She attended a two week confidence building seminar over the summer for teens with vision impairment who are planning on going to college.  She had a blast with the training which included a white water rafting trip and visits to local college campuses.  It was actually on one of these visits where she registered for college and set up her schedule.

After all of this training was completed, the Department of Rehabilitation provided the tools and equipment so she could go back to college and prosper. Things like a huge CCT screen that magnifies the print in her textbooks, a special machine for reading audio books (some text books can be provided in an audio format), special papers and pens for completing homework and taking her own notes, plus they provided a software program that will enlarge the computer screen up to 8 times normal.  It can also reverse the colors (white on black) which provide a better contrast for Liz to read.  To house this program a new laptop set up was provided. All of these tools and training allowed Liz complete her semester and realize that while she has new challenges to face and it might be more difficult, she can complete college and move into a career. I know we are all looking forward to the day she walks across the stage to receive her college degree.

I hope you have a fantastic Friday too!

Pax Christi!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Third Sunday of Advent — Gaudete Sunday

Today is the Third Sunday of Advent. We light the pink candle to Rejoice that the birth of Christ is coming soon. This week we have a lot to celebrate.

Liz spent the early part of this week in the hospital. Last Sunday her vision suddenly became more blurry and foggy. Since this was how things started for her in February 2010, we headed to the Johns Hopkins Emergency Room. Johns Hopkins is were all of her specialists practice and rather than deal with the local ER, who would just have to send her down there, we went there instead.

I know God was with us that day. There was no wait at all for her to be triaged and placed in a room. You have to remember Hopkins is in the middle of Baltimore, MD. The last time we went there in 2010, we spent almost 4 hours in the waiting room. So it was a minor miracle that she was in a room within 20 minutes of our arrival.

All the preliminary testing happened quickly. We saw all the opthamologist and the neurosurgeon fellows within 4 hours of arrival. The neurosurgeon fellow even expected her to be discharged and come back later in the week for an outpatient shunt patency test. However, Dr. Rigamonti, her neurosurgeon, had her admitted so they could do the test the next day, rather than wait for a future date. The neuro-opthamologist also ordered specialized eye imaging of the retina and optic nerve. Monday was spent doing these tests.

Tuesday the doctors conferred over the test results. The tests are showing the shunt is working and her eyes are looking okay. So while we do not know exactly what has caused her vision issues, we do know the shunt is working and that means no major surgery right now. We were all relieved over this.

She is completing her first semester back at college this week. She will have finals next week. Then she will have more follow up appointments at Hopkins. We are praying that her vision returns to her new baseline over the break and the issue has just been overuse and strain over these last couple weeks of the semester. If that is the case, we have all learned a lesson and she will need to pace herself more during the semester and not have to spend a large amount of time on the computer for days on end.

I hope you have a wonderful week and rejoice that the Lord’s birth is drawing close.

Pax Christi!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Here we go again…

Liz had a neurology appointment on Friday. Since this all began in February of 2010, Liz has had horrible headaches. She had some relief from the pain after the initial surgery in February and then again with the revision surgeries in June. Lately the headaches have been getting worse.

There is a test that is done called a shunt patency test. Dye is injected into the shunt and the x-rays are taken to see how long it takes to drain. The last time Liz had one it took 14 minutes, it should take under 10 minutes. No one had told us about this delay, but since the headaches have steadily been getting worse, so it is now a concern.

Shunts have settings, or openings, to allow for the different speeds of draining of the cerebral fluid. The doctor adjusted Liz’s shunt to the lowest it can possibly go. So now we will see how it drains over the next week.

She goes next Friday for another shunt patency test to see if the shunt adjustment has worked and the shunt is draining faster and better. I had to ask the question of what happens if it isn’t doing better. The doctor said let’s not borrow trouble. I HATE when people say that!

I hope you have a wonderful rest of your weekend.

Pax Christi!

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Another crazy day complete

Another day down in the 21 day sprint! This one involved another day of running around the Baltimore area. Liz had her appointment with the neurologist today. We are trying to help with the migraine headaches she has been having for the past 18 months. We are in for a rough couple of weeks. The neurologist thinks the over the counter medications she has been taking to help combat the headaches are actually causing rebound headaches. As of today she is not allowed to take any more Advil, Tylenol or naproxen. To help her over the “withdrawal” hump, she is to take a tapered dose of steroids while at the same time increase the dose of a medication that is supposed to help control migraines. We shall see how this works for her.

I am thankful that while Liz and I spent a few hours at the hospital, Richard stepped in and helped with the group work for home school. When he helps out the children have a blast. Dad makes up crazy sentences for spelling. Dad also loves History, so having him help out with the lessons can lead to some interesting side conversations. (And if Mom isn’t around, they can go on and on without a reminder to get back on task.)

Since Liz’s hair was several different lengths due to the surgeries, late last year she had her hair cut short with the intention of letting it grow long again. Well she reached THAT POINT where you can’t stand it anymore and today she went to get her hair trimmed. While we were there, I had my hair trimmed too. I think I found out why I was having daily headaches. I had about 10 inches lopped off and must have lost five pounds. What an easy way to lose some weight!

After dinner the boys had a Boy Scout meeting and Liz had physical therapy. Thankfully one of our friends from boy scouts bought the boys home. I was really crunched for time running between the two places. Richard was supposed to bring the boys to scouts, but it looks like he had a touch of either stomach flu or food poisoning. Needless to say he was able to help out this evening. By bedtime he was feeling better, so I am praying it was more a food poisoning. Stomach bugs in this house are NOT a pretty sight.

Tomorrow is a slightly quieter day with only one appointment in the afternoon for Amanda. I am supposed to head out with a friend for dinner in the evening. Richard is planning on taking a couple of the children up volunteer at the parish/Knights of Columbus fish fry. All plans for the evening will depend on how everyone is feeling

I pray you had an uneventful day.

Pax Christi!
A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Monday Update

I stopped updating and I apologize. Once Liz had the shunt replaced, her vision started to improve, but her headaches did not. So we know know the headached can be seperate from shunt issues. She had neurology consult and is now on a new headache protocal to help with the pain. She was discharged today and is resting right now. I can’t imagine the toll takes on her.

We plan on a quiet weekend to rest and rejuvinate as a family.

I hope you all have a wonderful week.

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Evening update

We retuned home from the hospital about an hour ago. It was definately a L-O-N-G day. After being told the surgery would be at 1:30, it kept getting pushed back and pushed back. She was taken to the operating room around 4:15, but the surgery didn’t start until about 5:30. I have to wonder what was going on back there. It only took about an hour all totalled and she was out of recovery and back to her room around 8:30.

Her neurosurgeon did come and talk to us after he was done. It turns out that the tube in the neck was not blocked. It shunt device itself in was clogged with “brain matter.” Yeah I freaked out when I heard that. It turns out the the pseudotumor cerebi conditon causes you to have very small brain spaces (called ventricles). So at some point in time when her shunt was adjusted the brain collapsed around the tube and a bit of it was drawn into the shunt devise. I have been assured that one it did not hurt and two it will not affect Liz at all now or in the future.

The surgeon replaced and repositioned the catheter in the brain so it is in a slightly larger space. He replaced both parts of the shunt devices. He intends to talk with the manufacturer to see if there was mechanical failure too since the valve portion of the shunt also was having issues.

They did not have to do anything to the tube in the vein, so that was a good thing. The bad thing is they had to shave off her hair again. I know she it truly bummed about that, but at least we know her hair grows fast.

I spoke to her just a few minutes ago. She has had her post surgery CT scan already. The doctor mentioned if all goes well she may return home tomorrow. I may have to fight to have her in there another day, she is experiencing a lot of naseau right now and I don’t want to try and bring her home if she is having dealing with it. So tomorrow we shall see.

I hope you all had a wonderful day.

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

We are off to the hospital

Richard and I are heading down to the hospital. Liz’s surgery is now scheduled for 1:30 PM. I am afraid they are doing more than a shunt revision. She called and told me that they have done a CT scan with markers. They did this in February when they originally placed the shunt. Earlier this month they just revised the tubing and did not do this particular test. I hope to speak to the neurosurgeon soon to find out what is going to happen.

I will update later when I am able.

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome

Quick Update

Today was a quiet one for Liz. With the drain in her back there is not much she can do. The drain has not been draining much and no one can tell me if that is good or bad. She is have a horrible headache and feeling sick to her stomach, so I would have to say that it is not good. I have been dealing with the neurosurgery residents since her doctor is off for the weekend.

I did go into mama bear mode this evening and get her pain medication upped and got her zofran for her naseau. When I left, the pain was in a managable level and the naseau was under control. I also had the neurosurgery resident paged to come down to the room to make sure the drain was working. It is working, but I have to wonder if something else is going on with Liz.

Tomorrow will probably be a repeat of today for her. I was informed that her surgery was scheduled for 3PM on Monday (as of now, we do deal with Hopkins time so who really knows!)

A married woman must often leave God at the altar in order to find Him in her housework ~~St. Francis of Rome