Appointment after appointment. Day after day. But I think if I can get my daughter to smile again we are on the upward swing. I know she is just so sad her life has taken this turn, she wants to be out there enjoying her senior year, but instead she is stuck with this foot that is in so much pain. Anyone experienced in dealing with chronic pain ? I know we will make it through. I know our Heavenly Father is mindful of our situation and he loves Morgan and wants her to be happy. It just a long road and through it we need to practice patience and learn from our experiences.
"Patience may well be thought of as a gateway virtue, contributing to the growth and strength of its fellow virtues of forgiveness, tolerance, and faith."
Well we have had three peaceful days at home - the quiet before the storm I guess because Morgan had a bad muscle spasm tonight. It scared her to death. I think she really thought they were gone. But she was able to breath through it and now she is resting peacefully. She had a great day at physical therapy and really likes the PT. I am working on some projects and classes for local stores. The big excitement is preparing for CHA. I am so excited and yet so worried about leaving my family. But Morgan is learning to work through it and I know things will be okay. As a mom I so wish I could take her pain away. it is so heart wrenching to sit and watch. Well, I am completely exhausted and must get some sleep.
(Marissa will be 20 years old in 5 days !!!!!!!!!!!!)
at 4am this morning they disconnected Morgan's epidural, she has been doing great all day. Just very relaxed. She walked to Physical Therapy and back and begged the doctors to let her go home. Their criteria was that she had to be able to function without a wheelchair, walker or boot. She did it. She has been walking. She is not completely pain free. But she is fighting. I don't know when the fighter in my daughter came out, but it did. I think the Lord has heard the prayers and the pleading. She has worked hard even though it hurts We have not had a good nights sleep in over 2 weeks. She has picked up a nasty cough and a UTI. So we are ready to crack this joint. She is so excited to just sleep in her bed. She tells me she is sleeping all weekend. Then we have physical therapy first thing Monday morning and 3x's a week for a very long time.We are going to conquer this nasty nerve disorder. Thanks for all the prayers - we look forward to returning to our life. We will be making some changes and re-evaluating things and we are so excited to just be with our family. Janna sent me this link to Melody's blog this morning and it is exactly what I needed. I hope everyone has a fabulous weekend. I will be getting some sleep.
Morgan is so tired of laying in this hospital bed - she really feels as though she is loosing it (so am I) So she just said - let me go home - they said we can't send you home with an epidural. She said then take it out. They said we won't take it out, but we will turn it off if you want to try and go to therapy without it. She said "TURN IT OFF" Guess what - my daughter is a fighter - she is ready to battle and her foot is not going to win !!!!!
I hope by Saturday night I am sleeping in my own bed !!!!!! keep Praying and Believe in Miracles.
Well it has been a rough two days - I think I am all cried out. There have been so many highs and lows these last two days. First of all let me explain that we are not going to Philadelphia - the more I have explored the protocol back there the more I know it is not right for my daughter.
But as for where we are - the epidural from Friday did not last and Dr. Jones was completely baffled. Morgan kept saying - it's in the wrong place, it's in the wrong place. So she was beginning to get anxiety from the pain she was in and the spasms kept coming. They had tried a number of anti anxiety meds and they just were not working. It was just causing a build up of alot of meds in her system and it was not good - it was beginning to freak her out. Then last night Dr. Jones came in and tried a new medication. It worked - she was numb, she was so excited, but it got into her blood stream, because the epidural must have been in the wrong place and she began acting really weird. She was freaking me out and I just began to cry. I just begged the doctor for my daughter back. He began to investigate and discovered that the epidural must have been in the wrong spot and that is why she got the reaction from the medication. Luckily Mylie was there and she was able to sit with Morgan. She was so calm and re-assuring and did not allow herself to get all freaked out like I was. Soon the medicine wore off and she was acting okay again but we are dealing with some pretty bad side effects from some of these medicines. They went in today and put her to sleep to re-do the epidural and it worked. She is numb and she is excited. She is still freaking out from some of the side effects from some of the meds. But those will go away. She got a headache tonight and said "just find me some Tylenol" I don't want anymore drugs in my body. So we are praying for a couple of good days with this epidural in and she is going to be good to go home. In Morgan's head she is not going home anytime soon - in my head we will be home by next Sunday. If we can just get her pain under control and some movement back in her foot we can go from there. We can do physical therapy on an outpatient basis. I am just ready to be home and be with our family. Thanks for keeping us in your prayers. Time to get some sleep.
It is Saturday and we are still in the hospital - when they told us this was going to take awhile they were not kidding. Baby steps. Progress, not perfection. Lot's of really smart minds working together in Morgan's best interest. They are controlling her pain to a point where she is getting a goods nights sleep, if that is possible in a hospital. Last night was her 3rd night of sleeping spasm free. That is something to celebrate. But she is really frustrated - she went in for another epidural yesterday, this one is more permanent and can stay in longer. But by last night she could completely feel and move her legs again. I don't know what the deal is. I am not saying her pain is breaking through. Because if she just lays in bed and doesn't move her foot then there is not lot of pain. But the minute the foot gets any action there is excruciating pain. The way Morgan describes it is like the pain is the adversary and it does not want her foot to get better. So if it lays perfectly still it won't bother her, but when she begins to move it, it hurts really bad. Last night we had a big breakdown and even few of the doctors and nurses were crying. But the reality is - the only way for her foot to get better is to endure that pain. One of the nurses said it would be like telling someone "if you step on that knife 20 times a day for 7 days straight you will begin to see improvement" How many of us could endure that pain ? And yet that is exactly what Morgan has to do in order to get better. It stinks really, really bad watching your child go through that kind of pain and knowing that is the only way she will get better.
Last night John Dahl was here and she asked him for a blessing and it was beautiful. We are praying for a miracle.
AS for everything else - we are hanging in there - talk about a trial - just when you think you are moving ahead and things are looking up - then you run into this big huge mountain - and unfortunately I can't carry my family over this mountain all by myself. You know as a mom you often times will sacrifice everything in order to make everything okay for your family. But this time there is nothing I can do except love and encourage my daughter. This is a time we need to draw closer to our Heavenly Father and rely on his hand guiding our life. Thank you to friends and family for all your love and support - there is no way we could do this without you.
Well all I can say is that today was a much better day all together. It is 9:30 pm and we have only had 3 major muscle spasms. They were still extremely intense. But there were only 3. That is so awesome. When we get to no muscle spasms then I think I will be able to go home bits and pieces at a time, but as long as my little girl is having these spasms I could never leave her. It is the most intense pain I have ever witnessed. Yesterday was such a hard day - lot's and lot's of crying. I think it was due to many things. She is tired. She is on a boatload of meds that make her emotions go on a rollercoaster. She is in intense pain. She is beginning to accept that this is going to be a very long road. She didn't sleep well at all. She had a few spasms in the night and she had so much anxiety. When I woke up this morning I just pleaded with the Lord and begged for some peace & comfort. I felt his hand today and it was very evident prayers were heard. I began to see glimpses of my little girl again. They have begun a routine schedule with Morgan and she is working really hard at it. She is to be at Physical Therapy every morning at 9 am and then we are booked until 3:30 pm. It is her goal to be out of bed the entire time. Everyday it is getting a little bit easier. The worst part is when she has a spasm while in her wheelchair. It is so incredibly painful. Morgan is fighting her way through this. I know she can do it. We have the most mazing team of doctors and I am confident in the care she is receiving. People keep asking me if I feel we should be back at the Children's Hospital of Philadelphia ? Right now - NO ! I feel as though they are doing everything they can for Morgan and they are doing an awesome job. Ask me again in a month if my daughter still is not walking and is still in pain and we might be finding a way to go to Philadelphia.
Well tomorrow I should have been heading to Houston, but I am so relieved to be right where I am. I am trying to keep myself busy and I think I have done as mush research on RSD as I can for now. So I am just busy working on my computer and getting things in order for CHA.
One of Morgan's requirements is to keep a daily journal and so my daughter has started a blog - being on the computer is really good way for her to keep her mind off the pain. So you can follow Morgan's journey and her fight to conquer RSD HERE. Hopefully this will help her see her progress as she moves forward.