UPDATES FROM 2013
April 20, 2013
Great news ! We got back to Siskin Hospital on Thursday afternoon, and Heather has been without seizures for 7 days!!! Praise the Lord!!!! It has been a very long time since she has gone that long without seizures!
And, Today, she walked for the first time in over a month! She surprised everybody because she could hardly stand yesterday. Yahoo! Yipee! Hallelujah! And Praise the Lord! She walked 12 feet with the parallel bars three different times! One time was amazing, but three times was incredible! She has had a few seizures this afternoon for an hour, but has calmed down now. We are not too allarmed because we expected to see some seizure activity when she began moving around and becoming more active. We are not sure yet how long she will have to be in the rehab Hospital. We expect a couple of weeks, but we will know more on Monday when they review her progress. Please pray that she progresses quickly, that the seizures will stay suppressed, and that the nerve pain in her toe will subside!!!! Have a blessed day at Church on Sunday!!!! The Lord is so good!
Psalm 9:1 "I will praise thee, O Lord, with my whole heart; I will shew forth all they marvellous works."
April 15 - 17, 2013
Monday - Wednesday
Well, it is Wednesday afternoon, and most folks are preparing to be in the Lord's house this evening. I can promise you that Heather and I would love to be going to Church this evening, instead of hanging out at the hospital!
PRAISE THE LORD! NO SEIZURES FOR 5 days now!!!!! YAHOO! WHAT A BLESSING! Heather is doing so much better, thank the Lord for answered prayer! AND thank you for continued prayers, I love it when the Lord answers prayers almost as soon as you get them out of your mouth! Heather has been having some disturbing pain since Saturday, down her leg into her big toe and into the arch of her foot where the hip was replaced. We have been asking the doctors what could be wrong because it is interrupting her ability to rest and is very painful. No position seems to give relief, and she is begging for more Tylenol almost an hour after she receives it. We have been asking if this could be nerve related, but none of the doctors have seemed to want to investigate it.
I left the hospital yesterday for a few minutes and was frustrated about this new problem she was facing. As I was driving down the road, I began to pray about this very issue when our daughter, Hannah, phoned. She was telling me that the Neurologist had just dropped in to see Heather. I was very surprised because he had been by on Saturday, and he had already signed off on her care so that she could be transferred to rehab. Hannah gave him the phone and I spoke with him about her recent pain. Our suspicions were right. He mentioned that the pain was nerve related, a form of neuropathy, and that Heather has probably been having some problems with it before, but it may have been masked by the pain in her hip. With that said, he prescribed Lyrica to help with the pain!
She has improved today, but the pain is still bothersome. She was able to sit up in a chair for about 4 hours and hasn't been complaining about the pain as much. I said all that to say the Lord was already answering my prayer before I even finished praying! Again, He is teaching me to pray about everything. If we could just learn to take even the smallest of requests to Him, we wouldn't get so frustrated! He has the answer to everything and sometimes His answer is just as simple as a prayer! If we could just learn to pray about everything, we may get answers a little quicker than trying to sort things out on our own.
We have been waiting on insurance the past three days to transfer her back to the Rehabilitation Hospital. As we know that the Lord has a reason for everything, we are trying to be patient and accept that there is some reason she is still here at Erlanger. And, yes, we have prayed about this matter, too! So, keep checking. By tomorrow, we hope to tell you that we have made the transfer to rehab and that Heather has started therapy!
"Hear my prayer, O God; give ear to the words of my mouth."Psa 54:2
April 13 & 14, 2013
Saturday & Sunday Update
PRAISE THE LORD!
SEIZURES HAVE STOPPED AND ARE UNDER CONTROL AGAIN!!!!
Heather is doing great! She has not had any seizures Saturday or today!!! And the infection in her hip is almost totally cleared up! We have a few medication issues, but plan to take adjustments very slow, so that we don't start seizures again. She is a little confused, and her way of saying it is, "Ya'll forgive me, I'm waaayyyy out there!"
She loves visitors, and she has had some unexpected visitors on Saturday as well as today! She was so excited to see each of them, and I heard her tell all of them several times, "Ya'll have made my day!"
She has some pain going down her leg and into her big toe which is bothersome to her, and making it difficult to rest. It could be nerve related, but we are not sure. We are hoping by getting her over to the rehab hospital, Siskin, and restarting the intense therapy again, that this pain will subside. There is talk of transferring her back to Siskin on Monday!
Our family, as well as church family, friends and even, total strangers have really rallied behind us during this time and we can't thank you all enough for the love and support you have shown! We have felt the Saviour's love through everything each of you have done! May the Lord bless you all!
Folks are still getting saved and the Lord blessed our church with a wonderful day! Heather was doing so well that I was able to go to church this morning and one of our care givers stayed with her. I haven't been able to leave her side this whole time except a couple of nights during the week while our daughter, Hannah stays with her. I was able to go to Church last Sunday night for the first time in 4 weeks. It was soooo great to be at Church, to hear the choir sing, to hear the Word of God preached and to see the souls who were saved, six who were baptized and the two that joined our Church today! What a blessing! We honestly couldn't make it without the Love of our Saviour! He is so good and He knows just what we need!
"I will love thee, O LORD, my strength." Psalm 18:1
April 11 & 12, 2013
Thursday & Friday Update
We were unable to post on Thursday because the hospital's internet connection was affected by some storms we had in our area... BUT, Heather's seizures were down to one on Thursday, and only one through the morning on Friday!!!! Praise the Lord!!!!!
We have made the switch from anticonvulsant IV medicines to pill form. They will continue to draw blood for levels of the medicines until she balances out with no seizures and alertness cognitively. BUT, Heather's seizures were down to one on Thursday, and only one through the morning on Friday!!!! Praise the Lord!!!!! Heather has been able to continue a little therapy in bed, and has tolerated sitting up on the side of the bed the past two days. She was able to sit in a chair for an hour and 1/2 on Wednesday, which was pretty amazing to everyone!
We think it would be safe to say that we are getting close to over 250 people being involved in her care the past 29 days....I was trying to calculate early this morning, and wish that we had been keeping some sort of record, but we haven't. There are two shifts of nurses and two shifts of CNA's every day. Most of them work 12 hour shifts --on for two days and off for three days. There have been a few times where she has had the same nurse for two days in a row, but not many. When you add together the 29 days with 4 different nurses and CNA's working with her in a 24 hour period, it totals 116 different people. Then, we include every doctor from Neurology, the Surgeon and his assistants, Infectious Disease Dr., the lung specialist, Family Practice Team, Respiratory Team, Physical Therapy Team, Occupational Team, Speech Team, IV team, Wound Care team, those who have drawn her blood, those who have run tests,and on and on and on…THIS IS A LOT OF PEOPLE!
I said all this to say, Heather has touched a lot of lives! Plus, we are very busy keeping watch and bringing the new face that walks through the door of her hospital room informed about her health the past 19 years. If you would have told us we would have met over 250 people or more the past 28 days, we would have said you must be exaggerating. Then, we try and think about the past 19 years and all of the doctors, nurses, therapists, care givers, etc. that have crossed her path, and I am once again reminded how the Lord has used his servant, Heather to touch so many lives!
Isa 43:10 “Ye are my witnesses, saith the LORD, and my servant whom I have chosen: that ye may know and believe me, and understand that I am he:
before me there was no God formed, neither shall there be after me.” Isa 43:11 “I, even I, am the LORD; and beside me there is no saviour.”
We, with healthy bodies, do not realize how many people the Lord may be putting in our path for us to show them there is a Saviour! Let’s do all we can to touch the lives that the Lord puts in our path today.
April 10, 2013
GREAT NEWS!!!!!! Heather was able to get some much needed rest last night. She had a break in her seizure pattern from 9:42 pm. until 10:40 pm. PRAISE THE LORD FOR HER!!!!! She began having seizures again at 9:15 am and we are on number 9. We are so grateful that her brain is now responding to the medication and seizures are slowly getting better. When we post that she has had 116 seizures in a 24 hour period, it is important for you to know that means she is having them all day and all night...simply put, while others may be sleeping, she is waking every 10-15 minutes with a seizure.
We expect that she could still have trouble until we transition her from IV medications to pill form. Please continue to pray because we are unsure of what her medication dosage will need to be. She entered the hospital on 2000 mg of Depakote and has currently been receiving 5000 mg, also her Vimpat dosage was 200 mg, and is now at 600 mg. The last time she has had seizures of this nature was a few years ago after she broke her ankle in three places. The time before that was in 2007 when she was seizing around the clock for a three week period with no breaks of rest in between the seizures. We were very concerned when she started this pattern, because she can lock-in to unstoppable seizures.
We have been asked for years and years, "What causes her seizures? Does stress? Excitement? etc..." Believe me, if we had the answer to these questions, we and the doctors would have eliminated the cause a long time ago. It is important to understand the two rare diseases that Heather has, so we are including a brief description of her Parry Romberg as well as her Rasmussen's Encephalitis. When she was diagnosed with these two diseases back in 1996, it was extremely rare and the doctors didn't know exactly how to treat them.... AGAIN, we can't thank you enough for praying and for keeping us encouraged with emails and texts...please keep them coming!
"The LORD is good, a strong hold in the day of trouble; and he knoweth them that trust in him. Nah 1:7
WHAT IS RASMUSSEN'S ENCEPHALITIS?- Click here to learn
WHAT IS PARRY-ROMBERG?-Click here to learn
April 9, 2013
Good news! Depakote is beginning to build in her system, and seizures are slowing. She has only had 26 today, much better than 116 she was having...
Our daughter, Hannah stayed with Heather through the night last night, and we went home to get some rest. On my way to the hospital this morning, one of Heather's doctors phoned me on my cell phone. He immediately began to apologize because he was unable to get by to see Heather yesterday. He is her infectious doctor, and the one who has been following her hip infection. There was no need for an apology because he has certainly gone far above what we would have expected of a doctor. I thanked him for his interest and concern for her care and he commented back, "Absolutely, she has really had a tough time." He was optimistic that her infection is healing, but had some concern because she is running a slight fever again. We were told in the beginning of the infection that these type of infections can rebound, but he wasn't concerned that was happening.
We have certainly seen the Lord working in more ways than we can pen down right now, and His presence is very near! It has been amazing how the Lord has provided Heather with the Best Specialist in their field of medicine - here - in our little town! As I got off the phone with the doctor, I thanked the Lord once again for the doctors he has given her. You can tell which doctors see their job as a calling. Just as my husband, Bro. Cape is called of the Lord to offer spiritual help to those in need, no matter the person, no matter the problem, no matter the time of day or night... likewise, some of Heather's doctors have been very "reachable" in offering their medical knowledge because they care!
I was typing this update, and her surgeon walked in to see her. He seemed very pleased with the looks of the incision and felt pretty confident that there is no infection deeper into the hip. Praise the Lord! He also said, "Though we took a long time in making the decision to do the hip and though we took several precautions in surgery, still none of us really knew exactly what to expect, or how she would do." Doctors are extremely busy, just as everyone is. However, you know your loved one has a good doctor when the doctor is reachable no matter day or night; even when they aren't on call.
Yesterday, the Family Practice team of doctors came in and expressed that they have all heard about Heather and have had group discussions about her care. They were glad to finally get to meet her. Erlanger hospital is a teaching hospital where residents are trained while they are finishing their schooling. It has been refeshing having the main doctors paying visits to her room and having them giving the orders for her care.
We are still at only 26 seizures, so, yes, she is improving! Keep praying that she will keep improving and that we will continue to be a light and testimony to those who are taking care of her medical needs!
"It is God that girdeth me with strength, and maketh my way perfect." Psalms 18:32
"The Lord will strengthen him upon the bed of languishing: thou wilt make all his bed in his sickness" Psalms 41:3
April 8, 2013
For those of you who are diligently following these updates, thank you for caring! We hope you are able to get a clearer pictue of how to pray for Heather, our family, and the doctors. We are sharing photos and tying to update articles, at the same time because so many are going to the site. Please continue to get the word out. This really isn't about us, or Heather, though we covet your prayers. It's really about a Saviour wanting to love on others through the life of our daughter.
We are planning to post information regarding Parry Romberg Syndrome as well as Rasmussen's Encephalitis, seizures, etc. which may be a help to someone! Everytime we share news of progress, we feel like we need to hold our breath because things are so unpredictable, and good news in the morning seems to change throughout the day. Praise the Lord, Heather was able to have a break in activity from midnight until 4:00 a.m. when she woke seizing again. At the time of this post, she has had her 15th seizure today, but is taking a nap. We are making another change to the regime of medications. They are going to be giving her 1250 mg of Depakon IV every 6 hours and changed her other seizure drug of Vimpat to 200 mg IV every 6 hours instead of pill form. Her Neurologist was in just a moment ago and felt like she was peaking too high on the higher doses at three times a day.
Playing on the KNVBC.com Internet Radio at this very moment is the song...."He'll give rest to the weary, give new life to the hopeless, there's no doublt about it, He's my Lord!!!!!!!" Praise the Lord! I can't tell you how much comfort we get from Godly music! It helps remind us that the Lord is walking in our midst and He is carrying Heather....When worry overwhelms us, we refocus and realize who is in control!!!!
April 7, 2013
It was another looooonnnggg night! The phone rang early this morning in the hospital room and the voice on the other end was Heather's main nurse over at the other Hospital calling to check on her. The Lord has given us some wonderful, caring people to assist us with Heather's care. We are so blessed!
Well, Heather has had some break in seizure activity today, but her day began at Midnight with seizures that would wake her and myself all through the night every 10 - 15 minutes. Each time she has a seizure, someone has to swipe a magnet across her chest where her vagus nerve stimulator is implanted. That magnet will give the generator a stronger volt of energy in hopes of shortening the life and severity of the seizure. Plus, we have to hold her sometimes to keep her left leg fromflexing and jerking. She has had 46 seizures so far today, with the last one being at 12:43 p.m. She is finally able to get into a deep enough sleep... Praise the Lord! The doctors are still increasing the seizure medication by IV, and we are prayerful that it will build up in her system...and she will go back to normal seizure control of 3 - 5 a day on an average.
The Surgeon who did the surgery was hesitant in doing so at first. He said it would be like doing OPEN HEART surgery on her, because of her underlying conditions. He also had great concerns of her dislocating the hip with seizure activity. When your body seizes, your muscles contract making it more likely that she could pop her hip out of joint and dislocate it. Plus, Heather has not been able to do the therapy that needs to be done for the hip and its healing for several reasons. #1 She was so medicated right after the surgery, that she couldn't assist them at all with getting out of bed. #2 She developed a terrible infection and was put on bed rest for a week because of that and #3 Her seizures have gotten out of hand, so she has been on bed rest for them as well. Heather has not been able to walk or stand on her own at all since the surgery. Any getting out of bed has taken great effort with a belt around her waist and two to three people assisting her into a wheel chair. She was able to go to the therapy room a couple of days at the beginning of the week, and she was put into a Stand-Aid. It is a machine that lifts her into a standing position. One day she tolerated ten minutes, the next 20. It has been years since she has stood ten minutes at a time. She has a long way to go, but once we get her seizures controlled, we KNOW she is on her way to recovery, and we are hopeful walking again!!!
Isaiah 40:31, " But they that wait upon the LORD shall renew their strength;
they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."
AGAIN, WE APPRECIATE YOUR CARING AND YOUR CONTINUAL PRAYERS!!
April 6, 2013
Thank you! Thank you! Thank you for every prayer, card, visit, meal, phone call, text message, gift, emails, scripture reminders, etc.... you have sent our way. Please keep them coming, it is keeping us going!!!! Each of you are a blessing to us!!!!
Today, Bro. Cape walked into the local Bojangles for lunch, and he said a song was playing over their intercom, that we know quite well and that was, "His strength is perfect when our strength is gone. He'll carry us when we can't carry on, Raised in His power the weak become strong....His strength is perfect, His strength is perfect!" Wow, how wonderful the Lord is to give him that reminder, not knowing that within an hour or so, we would be transporting Heather back to Erlanger, an acute care hospital to try and bring her seizures under control.
Heather's seizure activity slowed down last night and stopped after 116 around 10:30 p.m. She didn't have another one until 5:05 a.m. We were thrilled because she was able to get some rest for about 6 and 1/2 hours, and it seemed we had broke that pattern of seizure activity....The morning seemed to be going rather well. There were a couple of breaks where she would go two hours or more in between seizing. She was able to enjoy a bowl of cereal, and the Occupational Therapist came in to help her get dressed in bed. I asked the therapist if she would assist her and not give her commands to think about because of all the activity. When the Physical Therapist came in, I asked if she was going to do therapy if she would do the work for Heather by exercising her feet and legs for her, and not require much participation on Heather's part.
Heather was going to take a nap and around 11:12, she woke with a seizure....and here we go again... The nurses, as well as the doctors decided to transfer her back to Erlanger in order to try to bring her seizures under control. To be quite honest, she had already won a lot of their hearts and it is pretty disturbing watching her go through this. One of her CNA's was crying as we rolled Heather away on a stretcher...And another nurse was crying when folks from our church went to the room for us to gather all of our personal belongings.
It is 8:00 p.m. and we are in the ER waiting to be transferred to the floor. She just hit the 63rd seizure for the day, and we have a long way to go before midnight. They have taken blood and are about to give her seizure medications intravenously........She is lying here with the cell phone playing her favorite internet radio station KNVBC, and singing when she can.
I Peter 5:10 "But the God of all grace, who hath called us unto His eternal glory by Christ Jesus,
after that ye have suffered a while, make you perfect, stablish, strengthen, settle you."
March 15, 2013 - April 5, 2013
We felt the need to publish the site earlier than we anticipated, so that we may have easier access to inform those who are interested in Heather's care.
Heather had a hip replacement in one of our local hospitals here in Chattanooga, TN on March 15th. She has had serious complications from the surgery and is currently in a Rehab Hospital. Today is April 5th, 2013 and Heather has been in epilepsy status the past few days. We have been unable to bring her seizures under control...she has had 76 seizures within a 24 hour period on April 4th, yesterday....
A brief update from March 15th to today, April 5, 2013…The past 25 days have been very stressful and challenging to say the least. We have felt the Lord’s presence and know that it is the prayers of His people that is keeping us encouraged. Though Heather’s surgery went successful, several precautions were taken to give her the best of care and to take into consideration her seizure disorder that is very sensitive to change of any kind. She stayed in the operating room a little longer than normal for the purpose of waking her slowly, and was sent to recovery for a few hours and allowed to wake on her own.
The bone and socket they removed from her left hip were about an inch thick with decay from the avascular necrosis. The Doctor took extra precautions for her surgery and added a little length to her leg to help the new hip be tighter in the joint…She was doing great that evening, but things changed within a few hours through the night. Her heart rate began escalating 110, 115 until it was staying around 153-156 and her respiration became very shallow. She was breathing about 30 – 35 breaths a minute.
Around 3 am, her blood pressure had dropped and she was given a bolus of fluid. Shortly thereafter, she was examined by the doctor, and a chest x-ray was ordered. The chest xray showed fluid on the lungs. At 4:50 a.m. she had a grand-mal seizure and her heart rate was at 169. The rapid response team was called and within a matter of seconds her room filled suddenly with about 20 medical personnel. She had to be given 2 pints of blood and discussion was made to transfer her to the ICU. Her Neurology Doctor didn’t want her transferred, because she would no longer have anyone by her side 24/7. He did agree to allow them to transfer her to the IMC unit which is a step down from ICU, where the family can still be with the patient, however, they didn't have a bed, so we stayed put!
It seems like one day there would be good news to share, and within hours things would change again. Heather was transferred to Siskin Rehabilitation Hospital on Friday night exactly one week after her surgery. On Saturday, March 23, the nurse was suspicious, she had a slight fever…She had a urinary tract infection that was later discovered to be ecoli and there was heat and redness around the incision….On Sunday, the infectious disease doctor was contacted as her incision had become seriously infected. Two strong antibiotics were introduced to treat the infection ranging from strep, cellulitis, to staph or merca. Unsure of what we were treating and whether or not the infection would clear with the antibiotics, we were told she may have to go back in for surgery. The antibiotics interfered with her seizure medication and we couldn't get the medicine to stay in her, so we began having 15 seizures or more a day, which brings us to today…..
April 5th, 2013
In spite of all the precautions, we are where we were hoping we wouldn't be again with Heather. We have been in epileptic status the past few days, but today has been the worst…As I type this update she has had 116 seizures today and it is about 11:50 p.m. She was given several rounds of albumin yesterday. Albumin is a protein in our blood that helps bind medication in hopes of the Depakote, seizure medicine, attaching. She was given two pints of blood today and an extra iv of Vimpat which is one of her other seizure medications. The wound care doctor took her pump that was draining fluid off of her incision and said we would recheck her tomorrow. If there isn't much drainage, the pump stays off, but if too much drainage, the pump goes back on. He was hopeful that the infection was clearing. It does look much better, but these kind of infections can relapse. The antibiotics were stopped as well, so we are prayerful that the seizure drugs will begin attaching to her albumin and the seizures will subside. She has had her first break in seizure activity since 8:45 am this morning. They have been coming at her with 5 – 10 minute clusters and basically the seizures have been every 10 minutes all day long! The Lord is good and we are again learning to trust what He is allowing in her life. Please keep praying.