Stephenie's kidney doctor still has not come in today. We are waiting for his assessment before we decide on what to do next. More test? maybe more treatment? Go home? or maybe more wait and see.
I have learned to trust God and be confident in Him during these times of waiting. This is when I enter into His Rest.
Teresa
Wednesday, October 8, 2008
History
I will attempt to give an overview of the last 8 years so that you, the reader, can know Stephenie's medical history.
She was born in Feb 2001, a full term 6 pound baby girl. Her hands and feet were not straight and she was sent off to her first specialist. We went to Children's Hospital in Birmingham, Alabama. I do not remember the medical term they used but I was assured that they could be corrected with braced. There was no medical condition connected with these abnormalities.
When Stephe went to her 4 month check up Mark and I were concerned that Stephenie was not growing (eating) properly. We talked with her doctor about our concerns. Stephenie had doubled her birth weight, which is the mile marker the doctor went by, so he said he would keep a close eye on her. We explained what we called "episodes" to him and she began treatment for GERDS.
At this point in our lives Mark was working heavy construction, building tanks. He would travel from place to place building and repairing these huge tanks. When Stephenie was a month or two old we put everything in storage and started traveling with Mark. The family was together and we loved it. Elizabeth was 5, Sarah was 4 and Zech was 2.
About 2 weeks after her 4 mo. checkup we were on our way back to the doctor. We were all in Georgia, with Mark, I forget the name of the town. It was Friday morning. I remember because Mark had Friday off and we waited to go in until Friday morning so the whole family could stay together. We only had one car and we had to go back to Jasper, Alabama where Stephe's doc was. We made this decision on Thursday. Stephenie was not eating properly. The day before she had only drank 3 bottles. We knew that if she did not improve on her fluid intake we would need to take her in to the doctor.
Stephenie only drank 2 bottles on Thursday, so we headed out early so we could get to the doctors office first thing in the am. She would wake up and start to drink a bottle. Shortly after she started to drink she would start screeming ( she had mostly stopped crying by now and she would half cry half screem) and her little body would shiver (resembling when you have a burst of cold come over you and your whole body does a mini convultion). We called these "episodes" and they were getting worse and more frequent. After an "episode" Stephenie would fall asleep for hours, and we could not wake her up. So to the doctor we went.
I knew the receptionist would ask why we thought she needed to come in for an "emergency" visit. I just told her Stephenie was not eating propperly and had only drank 2 bottles the day before. They said to bring her in. A little while later her doctor's nurse called us and asked questions. She said she was going to talk to the doctor and would call us back. I remember thinking she might call us back and say it was not urgent enough to bring her in. I was way wrong. When she called back she told us not to come to the doctors office, but to take Stephenie directly to Children's Hospital in Birmingham.
I think it is important to tell you that on the way to the doctor's office I had a faith crisis. Mark and I came to an agreement and we are standing on the promisies of God, and He has given us many to stand on.
We made arragements for Mark's niece to meet us at the hospital and pick up the older three children.
This was the start of questions, tests, waiting, more tests, more questions, and more tests and always more waiting.
To be continued...
She was born in Feb 2001, a full term 6 pound baby girl. Her hands and feet were not straight and she was sent off to her first specialist. We went to Children's Hospital in Birmingham, Alabama. I do not remember the medical term they used but I was assured that they could be corrected with braced. There was no medical condition connected with these abnormalities.
When Stephe went to her 4 month check up Mark and I were concerned that Stephenie was not growing (eating) properly. We talked with her doctor about our concerns. Stephenie had doubled her birth weight, which is the mile marker the doctor went by, so he said he would keep a close eye on her. We explained what we called "episodes" to him and she began treatment for GERDS.
At this point in our lives Mark was working heavy construction, building tanks. He would travel from place to place building and repairing these huge tanks. When Stephenie was a month or two old we put everything in storage and started traveling with Mark. The family was together and we loved it. Elizabeth was 5, Sarah was 4 and Zech was 2.
About 2 weeks after her 4 mo. checkup we were on our way back to the doctor. We were all in Georgia, with Mark, I forget the name of the town. It was Friday morning. I remember because Mark had Friday off and we waited to go in until Friday morning so the whole family could stay together. We only had one car and we had to go back to Jasper, Alabama where Stephe's doc was. We made this decision on Thursday. Stephenie was not eating properly. The day before she had only drank 3 bottles. We knew that if she did not improve on her fluid intake we would need to take her in to the doctor.
Stephenie only drank 2 bottles on Thursday, so we headed out early so we could get to the doctors office first thing in the am. She would wake up and start to drink a bottle. Shortly after she started to drink she would start screeming ( she had mostly stopped crying by now and she would half cry half screem) and her little body would shiver (resembling when you have a burst of cold come over you and your whole body does a mini convultion). We called these "episodes" and they were getting worse and more frequent. After an "episode" Stephenie would fall asleep for hours, and we could not wake her up. So to the doctor we went.
I knew the receptionist would ask why we thought she needed to come in for an "emergency" visit. I just told her Stephenie was not eating propperly and had only drank 2 bottles the day before. They said to bring her in. A little while later her doctor's nurse called us and asked questions. She said she was going to talk to the doctor and would call us back. I remember thinking she might call us back and say it was not urgent enough to bring her in. I was way wrong. When she called back she told us not to come to the doctors office, but to take Stephenie directly to Children's Hospital in Birmingham.
I think it is important to tell you that on the way to the doctor's office I had a faith crisis. Mark and I came to an agreement and we are standing on the promisies of God, and He has given us many to stand on.
We made arragements for Mark's niece to meet us at the hospital and pick up the older three children.
This was the start of questions, tests, waiting, more tests, more questions, and more tests and always more waiting.
To be continued...
Tuesday, October 7, 2008
Roller Coaster
The first time I went on a roller coaster ride I was 29 or 30. I loved it. This year we took our children to Silverwood Theme Park. I went on Panic Plunge. My kids think it was great that I went on it. I found that I'm getting too old for roller coaster rides and plunges.
Our roller coaster ride is starting here at the hospital too. We did not get to go home today. Stephenie is retaining fluids and the docs are trying to figure out how to help her. They think it might have to do with the low albumin levels.
More waiting.
Isaiah 40
28 Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary, and young men stumble and fall;
31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Our roller coaster ride is starting here at the hospital too. We did not get to go home today. Stephenie is retaining fluids and the docs are trying to figure out how to help her. They think it might have to do with the low albumin levels.
More waiting.
Isaiah 40
28 Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary, and young men stumble and fall;
31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Sunday, October 5, 2008
Hospital Stay
Here we are again. Stephenie and I are at the hospital. We came in Sunday morning, to the emergency room. They did the usual blood draws, urine sample, and x-rays. The x-rays came back clear. They check her lungs for signs of infection etc. The urine showed a high white blood cell count. She has a UTI (urinary tract infection). The blood tests showed low albumin and it tested positive for an infection. So we waited, and waited some more. I hate waiting. We are waiting to see what kind of blood infection she has. The culture has to grow in the lab so it can be identified.
Did I say I hate waiting? I also am having a hard time with being alone. Not the bit about being in the room without my family around, we all pitch in and do our parts to get through the current circumstances. Hopefully with grace and trust shining through. My hearts desire is that God be glorified in all I do. I'm sure I have failed miserably this visit. I feel alone in the world. Me sitting here waiting with very few people calling to see how she is or if I am OK. Sounds like a pity party I know. I'm sad today because I see Stephenie's health going on a steady downhill (or maybe mountain) slide. Life is on hold right now.
There is a fine line somewhere between being your child's advocate and making sure she is getting propper care and on the other side of the line is being so difficult that the hospital staff hates to come into your room for fear of dealing with the mom. I think I crossed that line this visit. I know that I get overwhelmed with taking care of Stephenie in the hospital. You are probably asking yourself, Doesn't the hospital staff take care of her in the hospital? The nurse has 3 other patients to take care of besides Stephenie. And Stephenie's care is so involved that the nurse's load is just too big. So I know going into the hospital that I am in for long days with little sleep. FYI, Stephenie cannot be left alone. We are on day two and her medication still is not being done right. I have to check it all before they give her anything. I get tired. God help me. I feel I am failing miserably.
I started this blog on Monday. It is now Tuesday. I have spotty access to the computer here and have to stop and start my ramblings. Sometimes it takes three or four attempts to get one paragraph down.
Stephenie's blood test came back positive for staff infection. They say it is not in her blood but probably came from a contaminate on her skin. This is good news and we may get to go home today.
Psalm 5
1 Give ear to my words, O LORD, consider my sighing.
2 Listen to my cry for help, my King and my God, for to you I pray.
3 In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.
Did I say I hate waiting? I also am having a hard time with being alone. Not the bit about being in the room without my family around, we all pitch in and do our parts to get through the current circumstances. Hopefully with grace and trust shining through. My hearts desire is that God be glorified in all I do. I'm sure I have failed miserably this visit. I feel alone in the world. Me sitting here waiting with very few people calling to see how she is or if I am OK. Sounds like a pity party I know. I'm sad today because I see Stephenie's health going on a steady downhill (or maybe mountain) slide. Life is on hold right now.
There is a fine line somewhere between being your child's advocate and making sure she is getting propper care and on the other side of the line is being so difficult that the hospital staff hates to come into your room for fear of dealing with the mom. I think I crossed that line this visit. I know that I get overwhelmed with taking care of Stephenie in the hospital. You are probably asking yourself, Doesn't the hospital staff take care of her in the hospital? The nurse has 3 other patients to take care of besides Stephenie. And Stephenie's care is so involved that the nurse's load is just too big. So I know going into the hospital that I am in for long days with little sleep. FYI, Stephenie cannot be left alone. We are on day two and her medication still is not being done right. I have to check it all before they give her anything. I get tired. God help me. I feel I am failing miserably.
I started this blog on Monday. It is now Tuesday. I have spotty access to the computer here and have to stop and start my ramblings. Sometimes it takes three or four attempts to get one paragraph down.
Stephenie's blood test came back positive for staff infection. They say it is not in her blood but probably came from a contaminate on her skin. This is good news and we may get to go home today.
Psalm 5
1 Give ear to my words, O LORD, consider my sighing.
2 Listen to my cry for help, my King and my God, for to you I pray.
3 In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.
Saturday, September 27, 2008
Why Love?
The greatest of these is "Love."
I often wondered why God said the greatest of these is love. I think I now understand in part,why love is the greatest.
When I was younger I used to start my conversations with God by saying, " God if you love me then why...." One day God replied (through His Word)
James 1: 5 - 8
If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. That man should not think he will receive anything from the Lord; he is a double-minded man, unstable in all he does.
I knew He was telling me that I was double-minded. How was I double-minded? On one hand I would say I knew God loved me and on the other I would say "God if ..."
Once the issue of God's love was settled, I realized I needed to change my question to "God since you love me, would You help me understand where I need to change my thinking?"
Hope is then kindled because there is intimate knowledge of God and His love. When a relationship with God is settled on a foundation of love, trust in the Character of God can then bring Peace. What a wonderful place for the Word of God to birth within us...Faith.
1 Corinthians 13:13
And now these three remain: faith, hope and love. But the greatest of these is love.
Thursday, September 18, 2008
Pictures
Maybe not our best side, but they are fun none the less. Thank you Donna for the pictures. They were taken today, 17 Sept. 2008. Isn't technology fun!?
Proverbs 17:22 (King James Version)
A merry heart doeth good like a medicine
Saturday, September 6, 2008
Honor
Today has been a hard one, ok it's been a hard week. Mark and I have both hurt our backs again. Usually only one of us is hurting at a time. So we are in pain, physically. On top of that I can not find my Synthroid. I keep it on the counter where I can see it. It has gotten up and walked away. Since I don't have a thyroid, I'm a bit nervy right now. I will have to go buy some more, at $70 a bottle it's a bit spendy to lose. Our last car broke down, it's the fuel pump. The only car we had that fits Stephenie's wheelchair. This is where one trusts God and enters into Rest or ??? I'm not sure I want to find out. I may not make it back. I choose Rest and Peace in the One Who loves me, there is comfort in His arms.
Stephenie's seizure patterns are changing again. She had to have Diastat this week. That is an emergency medication we give her when she has a very long seizure (more than 10 minutes) or a violent seizure that lasts more than 5 minutes. Before Diastat some seizures would last more than 1/2 hour. She has 3 other meds. for seizures control as well as a very regimented diet.
Before we knew Stephenie was having seizures we would call them "episodes". She was having seizures when I was pregnant with her, although I didn't know it at the time. I could feel her moving violently with long periods of stillness afterward, but who knew they were seizures. If the medications she is on stop working there is nothing left to try or add onto her regiment. I have a very difficult time watching her go through seizures.
She has been very fussy the last couple of day too. Tummy pain.
If I keep going on I will depress myself, not to mention anyone out there who is reading this.
I have been meditating on the thought that "God is Honorable". He is worthy of honor and He does what is honorably.
Enter into His Rest and find Peace, I do.
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