MAR 13, 2008 - BILLS, BILLS, BILLS

I just can not believe how much Abby's surgery came to.  The final bill came to $90,000.00 for something they could not fix.  For some of use that is what you paid to purchase your house.  Karen and I have to come up with an extra $2000.00 from somewhere.  Karen and I are trying to figure things out and complete the paperwork for state assistance. 

Abby is doing great.  She got all her staples out and healing.  We have not see many seizures so besides Karen continue stomach, breast, or other parts we would have a very boring family.  YEAH RIGHT!

Abby has another visit to the pulmonologist, endocrinologist, pediatrics, neurologist, and neurosurgery in the coming month or so for follow-up visit.   

FEB 25, 2008 - 40 STAPLES

Abby gets her staples out tomorrow and boy are we all glad.  Karen and I are trying to recuperate from the long hospital visits.  I don't think one really gets over an experience like what we had.  We are still worried that Abby will end up one day having to have the tumor removed.  I can definitely say our faith has been tested and you know what, "We WON."  Karen, me, Elizabeth, and Abby came out stronger.  How did we get stronger?  I guess time away does make a heart grow fonder. 

We decided not to jump to the VNS implant yet and wait a little bit longer one the current medication dosage before trying something else.  It seems as though with the lack of activity Abby has had in the past week we only saw 1-2 seizures.  So for now we wait.

I have added a link to the front page and also the contact page for "donating to Abby".  I will be using the funds donated to both the Georgia TSC and Abby's medicine.

FEB 20TH, 2008 - BACK TO SCHOOL

Abby was shipped off to school today. She will have a lot of restrictions until her heads heals. It is amazing how quickly children heal. She is happy to get back to routine and see her friends, hopefully they leave her 30 staples alone. My mom is leaving tomorrow and grateful for her visit.
Unfortunately, Abby is far from being cured. Jeff spoke with pulminiologist and due to her seizures it is possible in the near future Abby will have continue to have Carbon Dioxide issues. If the seizures are not controlled she will have a breathing machine at night. We will have another sleep study done in 6 months and CT scan done on her left lung in 2 months, before the VNS implant.

FEB 16TH, 2008 (4PM EST)

SO, I get this call at 10:30AM this morning laying in bed from a girl saying, "I want to see Elizabeth".  I can't believe I woke up so late, but then again I went almost 30 hours with only 6 to 7 hours of sleep.  I arrived at the hospital with 2 huge wagons filled with balloons, a girl with several stitches and staples in her head, and lots of stuffed animals.  I just can't believe it was just yesterday her brain was being put back together.  If it were me I would be crying for more morphine.  It is nice to have her home playing with her sister Elizabeth. 

Well, Karen and I have a lot to talk about and see if VNS would be a good option.  Right now, I just want to find a hotel and a nice Jacuzzi to catch up on relaxation. 

Thank you to everyone who has helped and sacrificed to make our stay in hospital comfortable. 

FEB 15TH, 2008 (5PM EST)

So I thought Mary Poppins had a difficult word to spell

Supercalifragilisticexpialidocious

Abby is going home tomorrow and will have the diagnoses of possible Tuberous Sclerosis but more than likely . . .

Dysembryoplastic Neuroectodermal Tumor (DNET)

The tumor is not cancerous but possibly can grow more into her frontal lobe - meaning wheelchair bound daughter if it happens.

She is doing well today compared to last surgery. She does not like the fact she has to go home with 6-10 staples. She will have them removed in 10 days when we discuss the VNS option.

Please pray for my mom who is getting ill. Also, a safe trip home for Abby and Karen. I am so tired with only 3 hours of sleep last night.

I think I will pass on the cookies tonight and go straight for the Valium to get some rest - Hallelujah!

FEB 14TH, 2008

We sat down with the neurosurgeon and neurologist today and we talked about Abby. He told us out of all the 20 years of patients he has only had 3 others whom he failed to remove or resection the tuber. He mentioned that it is in an area of the frontal lobe and not removable. He mentioned the tuber, which is calcified, can and can not grow. If it grows than we go back in and remove it with severe damage to the motor functions. If it doesn't grow than it truly is a tuber (current 4 tubers in brain and no other TSC signs) and we need to look at VNS (vagus nerve stimulation). The VNS is really the only other option we have in possibly slowing down the seizures and alternative to no options. Karen and I will be discuss further in the coming weeks to see if VNS is the best option to do. The procedure is really simple and works somewhat like my Interstim that controls my bladder but for Abby it help with seizures. She will have MRI's done of the brain and other areas of her body every 6 to 12 months. To say the least, I can't wait for Abby to come home and get back to somewhat abnormal normal life. I am feeling better after visiting the doctor again today and hope to recover soon. Lottery Question: How do you explain to Abby and Elizabeth that the surgery failed and more seizures to come? Winner gets 1 TRILLION dollars when I get to HEAVEN one day. Did I mention life sucks? If I didn't here is todays statement - LIFE SUCKS!

FEB 13TH (4PM EST) - BAD NEWS

SAD news today. Karen spoke with head doctor and neurosurgeon and they will not be able to operate. The one area a neurosurgeon will not touch is the motor area which is in the frontal lobe. One of Abby's tubers is in that area which is causing most of the seizures.

Poor Abby to go through all this opening the head to plan a grid, try to make her have seizures, changing medicine, and all these labs done and we come up with no way to decrease the amount of seizures.

Abby is going to have a difficult life. There are not many options right now but to increase her medicine and wait for science to catch up. They will take out the grid and plates on Friday and then send us home.

This is the last day to see more seizures.  We were told some time ago after Abby's last Video-EEG that the one tuber (where the grid is on now) might be too close to her motor function and why we needed to go through this.  So, it turns out it is. 

And if anyone quotes Romans Chapter 8 and I am going to punch them in the mouth!

FEB 11TH (6PM EST) - ZZZZZZ's

Abby, Karen, and Jeff had a full night and then day with little sleep. Abby made it a point, not with any influence to stay up until 12:30AM last night (or should I say this morning). Karen and Abby got some good ZZZZ (meaning snoring, which Jeff hates). So we wake up at around 8:00am. I run to get coffee for Karen and me with my hair sticking up everywhere hoping nobody will pay attention to me and come back. The mapping test last about 2.5 hours and during that time Abby has a small seizure. She is knocked out with medicine and sleeps. Then when she wakes up around 2'ish she has 2 more seizures. I am glad the doctor was able to see the seizures to proof to him she does have them.
The good thing is we don't have to do anymore mapping tomorrow and Abby can rest. She will still need to go without seizure medicine because they want to determine if her type of seizures change. Karen is at the hospital tonight and then she comes home for a night. All the doctors will gather all the information and determine the best course of action to get to this tuber, which will be a challenge, at least what they say. The thing is the tuber is right behind her motor function, which they do not want to touch because it will cause lose of motor skills. Karen and I will find out Thursday with Dr. Hudgins what he plans on doing.
Friday is the big day. Karen will be in ICU most of the time and overnight and I will be in her room waiting for updates.

I am going to bed and hopefully tonight I will be ZZZZ'less.

FEB. 10TH (2PM EST) - MY HEAD ITCHES

Abby is having a yucky day.  She has a bad yeast infection, her head itches, her tummy hurts, and other body parts.  We are trying everything to make sure feel comfortable but nothing works better than the MEDS!

She has not had any seizures yet (talking to the doctor made me feel stupid because I see them at home all the time).  I have to say the doctors and nurses here at CHOA (Atlanta) are incredible.  I will be at the hospital tonight so I can be here with Karen and not worry about traffic tomorrow and Abby's procedure.  The procedure tomorrow is somewhat painless but will help us gather information about these tubers. 

If she doesn't have any seizures the doctor will have to keep Abby up all night.  They will wake her up which hopefully will stimulate a seizure just like last time in August 2007.  OH HOW FUN!  If she does have to stay up all night I will send out an email blast to purchase DONUT and COKE stocks right away.

FEB. 9TH, 2008 - DAY AFTER - WEBKINZ BEDWORLD

FEB. 8TH, 2008 - DAY OF SURGERY (DAY BEFORE ABBY BIRTHDAY)

Abby is out of surgery. The surgery went really well and with the assistance of good medicine Abby is sleeping (2pm EST).

Abby has a big wrap around her head and there will be fluid from the brain leaking for the rest of the week (something the doctors didn't mention to us). They put 48 small leads on her brain and she will be connected to a video machine for the next week. We are very grateful for Gary and Kathie who helped us through this morning. Karen and I are somewhat holding up but get weepy when Abby cries. She will be in a lot of pain for the next few days.

I will write more later. We are about to pray. You are welcome to phone, text message, or email me for updates or personal notes. My cell phone is 404-704-4020.

4PM - Abby is in a lot of pain.  Her stomach hurts. Her catheter hurts.  And her head itches and hurts.  Karen and I didn't sleep last night and we have a very long day and week ahead.  She is one tough girl, but she doesn't look nor sound like Abby.  I want my girl home.

FEB. 5, 2008

As the day draws near the whole family prepares for what is happening inside Abby's head. We are quite nervous each one of us and not looking forward to the coming weeks. We could use all the help we can find.

1. We have not heard from the cardiologist regarding ECHO test if she has tubers on her heart.

2. We think we are scheduled for surgery on the 8th at 8am.

3. Abby is scheduled to have a sleep study on the 7th from 7PM to the morning to goes into surgery. The sleep study is to helps us understand why she is having so many pulminary problems. Also to see why we continually see marks on her left lung.

I do not have my pager anymore and find it more useful to reach me by texting my phone or calling me throughout the week. We will not have a room number to the hospital until 3PM on Friday.

FEB. 2, 2008

SAVED BY THE SCREAMING

Abigail and I had the time of our live yesterday as we saw the power of G-d change an impossible situation to giving G-d praise. !�

This is the story:

1:30-1:45 – Abby and Jeff arrives at Pre-Op at Scottish Rite, which is the drop dead date to complete the assessment. I end up parking in the hospital garage. (NOTE: We had an urgent endocrinology appt at 3:30).

2:00 – The nurse calls us back and does an in-take form. She goes through Abby’s history and says to me at 2:30-2:45pm you will need to do an Echocardiogram, another set of blood work done (which we did blood 3 days ago but not the correct type), and sign off from endocrinologist or they would not let her have surgery on 2/15. My first response was this, “What do you mean 15^th? She has 2 surgeries schedule. The first on is on the 8^th at 8am and the other is 15^th.� (NOTE: Karen and I used up all our vacation time because of the length of Abby’s recovery so reschedule is not an option.) The endocrinologist only had today’s time or it would be in March, which is not an option because she knows needs his signature for surgery clearance.

2:45-3:00 – While the nurse is running her mouth and my mind is going 1000 miles a minute I have a cardiologist on the phone to schedule an ECHO (which takes 30 minutes to complete) and she says to come over now to have it done (while I am giving her all my insurance information). We get there at 3:05, undress Abby and they begin the ECHO to see if she has developed any tubers on her heart (which will eventually happen but needs to be checked now prior surgery). The likelihood of her having tubers on the heart is rare but possible at her age. During the time Abby is having the ECHO and knowing I am going to be very late to the endocrinologist I had Karen call the office and plead to have them not cancel the appointment and that she needs the doctor to sign off for surgery. (NOTE: Dr. Schultz ((Pediatric Endocrinologist Associates)) office is never to be used because of the lack of respect they give to patients). Karen keeps getting the “NO, your appointment is going to be cancelled. I then call while Abby is sitting very still for the ECHO and speak with the Office Manager (like she is of any use). I speak with her and she keeps saying, “No�. I plead my case again, and again, and again until finally she says, “You can come over but we can’t promise anything.� I half dress Abby take her by my side and we run out of the ECHO (not waiting for any results). Also, while I was dressing Abby we asked to have a shuttle ready because it was 3:40 at the time and I couldn’t get to my car and drive 10 minutes to the endocrinologist. THE SHUTTLE LEFT and we had no way on getting there.

With Abby in my arms and all the hospital paperwork and clothes in the other I run up to the hospital (and I mean RUN) and I drop everything and pulled on the Scottish Rite’s valet person and told him, “I have 5 minutes to get to the endocrinologist, the shuttle left us, and I have $100 in my pocket – find me a driver.� There was a lady with her son (with severe autism) coming out of the hospital and we jump into her car and she got us there at 3:50.

3:50 – We go upstairs and enter the office. The front desk stupid girl says you are too late sorry we can’t see you. I tell her the story of what is happening and that I spoke with the Office Manager and go get her. The office manager comes out and not as smart as the stupid front desk person and keeps telling me NO you are too late. So, my works were this, “I am not leaving until I see the doctor and the only thing he needs to do before goes to feed his belly is to sign the letter and tell us WHY it was so urgent for this immediate visit to see him. They kept tell me she was 5 months over due and SHAME on ME during their rebuttal. Of course, my response was, “What do you think I am a STATE INSURANCE PATIENT. I HELP YOU KEEP YOUR JOB.� I got really loud and finally the doctor said he would see us. We get back to the room and he sees Abby for a lousy 3 minutes and tells us her medication just needs to be readjusted. I explained to Dr. Schultz about his loser nurse and staff mentioning that this was suppose to be an URGENT visit because her medicine was off and possibly cause some concern (NOTE: He didn’t know anything about Tuberous Sclerosis Complex and the endocrine system and be the cause of developing tubers). He mentioned the urgency was because her medicine was only off by .08mg, which is nothing to fear.

5:00pm – we still had to find a way back to the hospital so we run across the building to the pharmacy, during which Abby and I were so hungry and needed a bathroom. We call for a shuttle to come pick us up as we walk out of the pharmacy and get back to the place (about 3-5 minute walk) to wait for the shuttle and then I realize after 5 minutes and almost in tears I left all the hospital paperwork at the pharmacy. I grab Abby and we run back to the pharmacy to get it and run back to hopefully not miss the shuttle.

5:30-6:00pm – Abby and I are on the shuttle back and I have to tell her she has to have blood drawn (NOTE: I promised Abby no shots today). We get back to the hospital get Abby a present and ice cream. We go to the lab and they can’t find out paperwork and she should have wristbands on the whole day. We wait in the chair while Abby keeps say, “Is it going to hurt?� We finally end up leaving the hospital at 7:10pm. I didn’t get to bed until midnight because we had to rush over to Abby’s birthday party place to decorate.

Did I tell you I am for hire? If you find yourself in a bind with a doctor or stupid staff I will get the job done for you!

Thanks to G-d who is the Master Controller of Life and our daily activities.

January 25th, 11:00 PM EST

We got the results back from the stomach doctor from last week procedure and Abby does not have celiac. The results do show the esophagus is inflamed. Like we really didn't already now that. My trust in doctors is going way below the radar. If you are going to put a kids through a one hour test than give me something! Karen and I happen to watch a Discovery Channel show the other night about a child who ended up have epilepsy and one of the symptoms is stomach seizures (where she vomited every night). I researched this and found out that is a sign. We think and confirming with the neurological doctor if this is true. This might be a sign she is having seizures at night and why she wakes up 1-2 times a night, every night for the past 6 years. So, for now they have given us no hope or no new medicine, since she is already on the adult dose of prevacid.

Abby's birthday party is on Feb. 2nd and hoping for a good showing of friends. I am dressing up as a pirate, since she loves pirates all of a sudden. I have never meet a child that loves to play either computer or board games as Abby. She doesn't like television but will pester Karen and I to play long hours at a time.

I am half to 2/3rd finished with the new website. I have a friend completely it soon. I want to thank him for doing this for free and using his talents to bless others.

Please pray for Abby and Karen. They are both sick.

Any request on what you would like to see on my new website?

Shalom,

Jeff

February 1, 2008

Abigail has been sick with a upper respiratory cold with a really bad cough for the past few weeks. Karen took her to the pediatrician last week (who is familiar with TSC) and started her on some medicine. The cough turned into fever and more difficult time breathing. We were providing nebulizer treatments almost every 2 to 3 hours. Last night she reached a fever of almost 102. The thing with Abby she has weak lungs already and usually when in the situation she develops pneumonia or bad bronchitis. The cough finally turned into an infection (bacteria and viral). The doctor told us not to rush to the ER but to try another medicine. He didn’t want her to start a steroid because it would open up other infections and possibly delay her brain surgery. I prayed all night long and in the morning I took her to the pediatrician for a chest X-ray.

The doctor did a chest X-ray and what he saw were some spots on her left lung. He asked if this was something we have seen before and told him, “Yes, with previous X-rays and when she is sick (which of course is the only time we take X-rays).� He asked if I knew if these were tubers or not? In reply, “I don’t know because her Pulminology has never investigated it further.� He is going to schedule a CT-SCAN to find out more after her surgery. So, my phone call when I got home was to FIRE my pulminologist, since we Abby and I saw her two weeks ago.

In summary from TSC Alliance the findings of tubers on the lungs usually only occur when a female hits late 20’s/30’s. There is a small but likely chance it could occur. There are three different types of TSC lung tubers: “The three main pulmonary lesions found in tuberous sclerosis complex (TSC) are lymphangioleiomyomatosis (LAM), multifocal micronodular pneumocyte hyperplasia, and clear cell tumor of the lung.�

Then I get a call from the endocrinologist to find out that her T cells are off and need to come in to see him right way this Friday. Unfortunately, I will have to take half day and miss her birthday party this Saturday. Abby was born with hypothyroidism and been on medication for some time now. We have it checked often. I always in the back of my mind thought she was smaller than usual and should be on some growth hormone. “Tuberous sclerosis complex has been associated though infrequently, with abnormalities in the endocrine tissues. Alterations in thyroid function, in patients with tuberous sclerosis have been reported rarely. We report a patient with tuberous sclerosis complex who presented with hypothyroidism and precocious puberty.

Karen has been sick with the fever all last week. My immune system is fine but got an extra vitamin B shot to help. Elizabeth is coughing.

The sad thing is I am going to miss being the pirate at Abby’s birthday.

P.S. Sorry if there are spelling errors I am too tired to run spell check.