UPDATE ON HEATHER
Our website is still UNDER CONSTRUCTION, so please be patient with us.
June 28, 2013
It has been quite a while since our last update, and many of you have asked how Heather is doing now that she is home. It's hard to believe how quickly time has flown since she was discharged from the hospital on May 3, 2013. We left Siskin Hospital with a very medicated daughter who had a depakote drug level of 169 the day she was discharged. The high range is 100, however, she will normally have levels a little above 100, but 169 was extremely high. We had tried several medications to help with some intense toe pain she was experiencing, and thought perhaps they were interacting with her seizure medications. However, we discontinued them once we arrived home because they didn't seem to help with her pain at all.
I was scheduled to speak at a Ladies Meeting at the Faith Baptist Church in Richmond, KY on Sat., May 10th, and Bro. Cape had a meeting scheduled at the Bethel Baptist Church, in Valparaiso, IN on Sunday, May 11th. We decided to make our trip into a mini vacation and took off toward the Smokey Mountains for a few days. Since Heather was traveling with us, we wanted to be sure and break up our travels and allow her plenty of rest time. None of us were up to making a ten hour trip in a day's time.
Heather did extremely well on our trip! We were still battling toe pain, but had tried a medicine called Meloxicam, plus topical cream, and within a few days, the complaining faded. The doctors think it was a flair up of gout. Whatever it was, I hope it never returns. She complained more of the toe pain than she ever complained of the hip, and it kept her and us awake at night.
Once we arrived home, medicines seemed to be climbing. While Heather was in the hospital, she was given three times the amount of medicines to stop her seizures, and we knew that we would have to back them away. Adjusting medicines is a slow process because you don't want to generate seizures, but is necessary if she can't stay awake and stand up straight. We have now gotten one of the medicines to where it was when she went into the hospital, but we have some seizures going on also. We spent a great deal of time at the doctor this week trying to come up with a plan. Please pray that we get that balance of seizure control and alertness for her soon. She has not been able to do physical therapy in over three weeks due to toxicity of medication.
We took our teens to the Circle C Baptist Ranch in Buckeye, KY on July 17th - 21st, and Heather was able to make the trip with us. She had a great time, even though we were making medicine adjustments the whole time we were there, and she rested a lot! We all had a wonderful time and our teens made some great decisions for the Lord. When we got home, we were advised that our family pet of 14 years became ill while we were away and he died about ten minutes after we got him home. He was Heather's dog originally, and anytime she was sick in the hospital, he would grieve. He had a really hard time when she was in the hospital this past time. This last trip we took was just too much for him.
When we got home from camp, we went right in to our yearly Missions Conference this past week at Hillside. The Lord gave us some wonderful services, and we were pleased with the Faith Promise commitments that our people made to give toward missions. I heard Dr. Jack Treiber on the radio this morning say that he loves serving the Lord and everything he gets to do. I, too, love what we get to do in Chattanooga, TN for our Lord and Saviour! I couldn't imagine us doing anything else with our lives.
Please continue to pray for Heather's medications to level out so she can begin her therapy, and have her quality of life back. May the Lord bless you with a great day!
Psa 84:11 "For the LORD God is a sun and shield: the LORD will give grace
and glory: no good thing will he withhold from them that walk uprightly."
April 30, 2013
PRAISE THE LORD!!!!!!!! Things have changed dramatically since our last post dated April 24th!!!! Heather is doing great in all of her therapies in spite of the constant pain in her left toe and foot. I realize the last post was somewhat negative, afterall it was 2:30 in the morning and I did admit that I was frustrated... But since that post, things are better. No one is disturbing her rest any more through the night, we have decreased her seizure medications by 200 mg per day, and she is cognitively more alert and aware to follow instructions in therapy. She is having very good seizure control, maybe one or two a day is all she is having the past week!
As mentioned in the last post, we constantly have to be on “watch” and things have not changed in this regard. The x-ray in the knee was normal, from what they can tell, but they have diagnosed her with genuvalgus, which is valgus in the knee. Her left knee goes inward causing her calf and foot to go outward at an angle. They are making two custom made braces for the knee to see if it can be corrected by wearing a brace.
The new pain in her toe has been more bothersome to her than her hip ever was. She doesn’t get much relief from it and two medicines have failed to relieve her pain so we started a non-sedative pain medicine, as well as a third medicine to block the receptors in the brain. We were told they usually wait three weeks out before they investigate nerve pain. If the pain hasn't calmed by three weeks, it probably isn’t going to and the tests for nerve pain can be pretty intense. Heather has a few more days until three weeks, so yesterday we asked the doctor if we could at least have the foot x-rayed as well as the hip and he agreed. The foot x-ray showed an abnormality in the foot, and we are waiting for the podiatrist, foot doctor, to assess her and give us a diagnosis. The problem may have been there for a while, but was probably masked by the pain from her hip.
Her true personality is beginning to shine through again and she is joking and being silly with all of her therapists. When she is in pain, or having seizures, she doesn’t have much to say. They all love her and think she is great!!!!! Yesterday, it was one of her therapist’s last day here. She got him a big candy bar and a card. She told me what to write in the card and then she signed her own name. It made his day, and to top it off she walked 150 ft without stopping three different times for him. The other therapist was joking with her because he didn’t get a candy bar, so right after therapy, she insisted that we go downstairs and get him a snickers and bring it back up and give it to him. She calls him brother boy. Another of her therapists thought she would benefit from aqua-therapy and had to get special approval for her to go to the pool. Yesterday was her first day and she did great! It was after being in the pool for an hour that she was able to make those three laps around the gym!
We were told she can go home this Friday, May 3rd! She is so excited because her dad’s 15th year anniversary as Pastor of our Church is this Sunday, and she wanted to be able to be at church for that. There have been some concerns about her blood because her hemoglobin and hematocrit are low, and we are not sure why, but are investigating to see if she is losing blood, or not making blood. They thought we were going to have to give her two pints of blood last Friday, but her numbers have come up some since then.
She is very busy every day with therapy and this is one of the reasons why we have not been posting as often as we were because we, too, are busy with her. Prayerfully, we are nearing the end of this venture, but will pursue the new problems that have arisen with the valgus in the knee, foot abnormality, and the low blood count. Quality of life is what we have always desired for Heather, and we will continue to do all we can to help her live her life to the fullest. We can’t thank you enough for your continued prayers, and concern and especially for your thoughtfulness in the ways each of you have reached out to our family! WE LOVE YOU ALL!!!!!!!
*Be sure to check out the helpful resources button, as we have posted informative health articles that will give you a better explanation of the problems Heather faces on a daily basis, and we have also updated some photos of her recent progress…
Isaiah 26:3 “Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee."
April 24, 2013
At the time of this post it is 2:30 a.m. in the morning and we can't sleep! Have you ever been frustrated? Heather has had a new pain develop in the nerve in her left toe and foot for the past week and 1/2. At times it is very unbearable, and has caused her to be very restless through the night. We stopped the Lyrica that we had started to help with the pain, because she had side affects with slurred speech, increased confusion as well as sedation. We are trying a different medication and she had her second dose of it at 9:00 p.m. last night. It took her until about 10:30 p.m. to fall asleep.
I left, what I thought to be a very nice note on the door of Heather's room, asking the nursing staff to please allow Heather to rest without being interrupted so that she would be able to do her best for her therapies in the morning. She had just had her first real intense day of therapy and was unable to do her last session because she was exhausted. In the note I mention that we would contact them when she woke, if she needed to be changed or if we needed anything. In the note I also thank them for understanding and for giving her the great care she is receiving. In spite of my efforts, at 1:00 a.m. the supervising nurse and two CNA's enter the room to check her to see if she needs changing. So, they turn on the bright light, wake her, change her, turn her on her side, and leave. As soon as they left, she had a seizure. Ten minutes later, she still isn't comfortable, so we call them to reposition her. Normally, I am assisting her with repositioning and don't usually bother the staff as I know they are busy, but this time I decided that any request Heather had, we would be ringing the nurse's button. So, we ring the button and they have to come back in and reposition her again. Twenty minutes go by, and she still isn't comfortable, so we call them again to come and reposition her. They come in and she has another seizure. They reposition her again and leave. By 1:40 she had been repositioned 4 rimes and had two seizures. I think to myself, when will this end? So, it's now 3:00 a.m. and Heather has been turned one more time and is beginning to settle down to rest again.
I must say that at times it has been a battle to try and get others on the same page with us in regards to Heather's care. I have honestly felt like we have been in a war looking out for the enemy that is about to attack. Don’t misunderstand. There are a lot of wonderful people in the medical field giving care to our daughter. I don’t view any of them as an enemy. I am mainly focusing on the “watch” that we constantly have to provide through this. So, at 3:00 a.m., I am asking the Lord, “What are you trying to teach me at this time of the morning?” Instantly, it came to mind how the Devil, our enemy, is constantly trying to do us harm. He has to go to the Lord first before He can touch any of God's children, but he does it repeatedly over and over again. Time and time again the Lord is watching over us and protecting us from the enemy, and He will not allow anything to happen to us unless He says it's ok. As taxing as the past 38 days have been, and as tired as we all are in seeing to it that our loved one is getting the best care possible, the Lord never gets tired of fighting for me! This very thought is what keeps me going!
I plan to address what keeps happening repeatedly through the night with the Doctor in a few hours as he enters the room around 6:30 a.m. Perhaps we can come up with a reasonable plan of care during the night hours so that our daughter can rest and be able to perform to the best of her ability the next day in her therapy. Why? So, she can get better, and be able to leave this facility, get home, get back to church, and enjoy her life again.
It takes a positive and a negative charge for anything that runs off a battery to work properly. There sure are a lot of negatives that we could focus on, but we try and focus on the positives. However, when a negative arises, we try and figure out what we can learn from it. As much as I am watching out for the care of our daughter, I likewise, must keep a watch out for the real enemy, the devil who is constantly trying to defeat all of us. No matter how tired we get, we must keep fighting the enemy!
How is Heather? Well, she had a great day yesterday! She probably walked a total of 200 feet with a walker with all of the different therapies that she had. She only had five seizures the entire day, which is tremendous given the extensive three hours of therapy. She was able to get in and out of a car that is in the gym, and she had a great picnic lunch outside with her family and her dog, Snickers. We have a tentative discharge date of May 9th! I bet she will pass that goal and be discharged sooner! Don’t you?
We have an issue with her knee, so you can help us pray about it. She has some swelling and the therapist is suspicious that her nerve pain in her toe is coming from her knee. They are probably going to x-ray the knee and are discussing a custom made brace to see if we can pull it back in. They are saying that the cartilage in the left knee may be gone probably due to avascular necrosis. Her leg jets out at a terrible angle, making it difficult to walk. I don’t like what I’m hearing about it, so, I am just going to believe the Lord is going to fix it for her!