After 5 hours at DuPont hospital we finally were able to go home. LaRae's first doctors appt. Was with GI, however, her GI doctor was home sick so we saw someone else that didn't have time to review the cart and it really was a waste of time. I have no answer to any of my questions.
Then we went to pre-admissions testing and of course there was a really sick kid that didn't have a mask on. I tried to get LaRae to wear one that wasn't happening, so I ask for LaRae to be moved into a room away from them. I think we are safe so far.
They went over everything. I did find out it looks like they might be removing a disc in her back also. If I understand correctly they have to remove the disc to get to the spinal cord. The are calling it an exploratory surgery with possible disc removal and tethered cord release. She will be in the PCAU for several hours. Then moved to the PICU for at least 24 hours under heavy sedation good chance she will be on a ventilator the whole time. She has to remain still for 24 hours. She will not wake up after surgery until the next morning. Both Quintin and I will be with her most of the time. I will stay with her overnight. He will stay at the Ronald McDonald House or with friends from Church parents house.
They did have to do blood work. They crossed and typed her blood to make sure they have blood on hand if they did it. She wasn't happy about that.
They did call us with a surgery time she needs to be at the hospital at 9:45 am Monday morning.
Please Keep LaRae in your prayers. We sure need them.
Thursday, December 30, 2010
Thursday, December 9, 2010
Complication after her MRI
They decide for safety reasons they needed to intubate LaRae for the MRI. There was a risk she could aspirate. She had a cough before they did this and the chest tube aggravated the airway. When she came home she got really sick that night. She started to run a fever of 102.8, croop cough. congestion, and chest wheezing. I took her to the doctors the next day. We had to put her threw a chest X-ray to make sure nothing was in her chest because she was coughing up stuff. They checked her for strep that was negative. She had croop and bronchitis. I had to do neb treatments and give her steroids. Her doctor didn't what to put her antibiotics just yet because of her just getting over having c-diff. On Friday if she wasn't any better they would call in a scrip. Guess what....they had too. She wasn't any better. A week with no sleep. She's getting better still fussy.
I'm not sure if she didn't have a low IGA that she would of got this sick from being in the hospital for such a short time. This happens every time she steps into the hospitals with in 24 hours she is sick. I can only can come to one conclusion that her low IGA does affect her immune systems and why she gets so sick when she goes into a place that is full of germs.
They decide for safety reasons they needed to intubate LaRae for the MRI. There was a risk she could aspirate. She had a cough before they did this and the chest tube aggravated the airway. When she came home she got really sick that night. She started to run a fever of 102.8, croop cough. congestion, and chest wheezing. I took her to the doctors the next day. We had to put her threw a chest X-ray to make sure nothing was in her chest because she was coughing up stuff. They checked her for strep that was negative. She had croop and bronchitis. I had to do neb treatments and give her steroids. Her doctor didn't what to put her antibiotics just yet because of her just getting over having c-diff. On Friday if she wasn't any better they would call in a scrip. Guess what....they had too. She wasn't any better. A week with no sleep. She's getting better still fussy.
I'm not sure if she didn't have a low IGA that she would of got this sick from being in the hospital for such a short time. This happens every time she steps into the hospitals with in 24 hours she is sick. I can only can come to one conclusion that her low IGA does affect her immune systems and why she gets so sick when she goes into a place that is full of germs.
I'm not sure if she didn't have a low IGA that she would of got this sick from being in the hospital for such a short time. This happens every time she steps into the hospitals with in 24 hours she is sick. I can only can come to one conclusion that her low IGA does affect her immune systems and why she gets so sick when she goes into a place that is full of germs.
They decide for safety reasons they needed to intubate LaRae for the MRI. There was a risk she could aspirate. She had a cough before they did this and the chest tube aggravated the airway. When she came home she got really sick that night. She started to run a fever of 102.8, croop cough. congestion, and chest wheezing. I took her to the doctors the next day. We had to put her threw a chest X-ray to make sure nothing was in her chest because she was coughing up stuff. They checked her for strep that was negative. She had croop and bronchitis. I had to do neb treatments and give her steroids. Her doctor didn't what to put her antibiotics just yet because of her just getting over having c-diff. On Friday if she wasn't any better they would call in a scrip. Guess what....they had too. She wasn't any better. A week with no sleep. She's getting better still fussy.
I'm not sure if she didn't have a low IGA that she would of got this sick from being in the hospital for such a short time. This happens every time she steps into the hospitals with in 24 hours she is sick. I can only can come to one conclusion that her low IGA does affect her immune systems and why she gets so sick when she goes into a place that is full of germs.
LaRae's MRI results
As you know LaRae had her MRI on Nov 30th. We saw Dr. Campbell her nurosuergeon right after the MRI. We always see the PA first. He asked if we had any concerns or if there were any changes in LaRae. So I processed to tell him that LaRae is losing use of her left leg and foot. She can't bare weight on it to go to up steps, she drags the toe when she walks and it seems like she does know where to place it either almost like it's in outspace if that makes sense. I told him this has been going on for about 8 weeks now and the symptons are increasing getting worse over time. Just yesterday I had to help her go up the step to get into the house she could even bare enough weight on the left leg to get up at all.
Dr. Campbell came back in, which seem like an eternity, told me that the syrnix was worse. He had hoped it this was not the case. Said that since she is having symptons they will have to address it there is a but coming. The only problem is it's not going to be an easy fix. They can't drain the fluid because there is still not enough, however, they can't leave it untreated because it could cause nerve damage as the fluid collects. He also said that if the syrnix is getting larger it from another underlining problem. Here's the catch where her syrnix is it's from what is called a tethered cord. They ruled this out last Nov with the first MRI because they could see it. Nov that the fluid is collecting it's what they call a grey area where the cord might be tethered and it doesn't show on the MRI and they can only go by symptons.
It get complaicated for doctors what to do. So we had to out weigh the risk and our only option was to schedule Larae for Surgery to untethered the cord, hope that is the problem and that the fluid reabsobs into body. It was a very hard decsion for us to make. It was the saves out of all the options we had.
Her surgery is schedule for Jan 3, 2011 at DuPont Hospital for Children. She will be in the PCAU after surgery for a few hours, then in the PICU for 24 hours and then in a her own room hopefully for at least 3 days. We hope everything goes well. She has a low IGA which is part of her ummun system so ever time she goes in the hospital she comes out sick. So I worry about her being in over long period of time.
I am very nervous about this up coming surgrery. I am getting her a blessing. I have realized that I need to give this to my Heavenly Father and let him help me threw this. I need to be strong for her and my family. I haven't been able to do that at this point untill yesterday I had to underful sister from my church visit me. They brought us dinner and just coming and seeing me. They took time out their busy schedules to see what I needed I really thought at the sight of them I would lose it and break down and cry. I held it together. It let me know that that I can do this and it might feel like I am going threw this all alone and know close to me understands, however, I have lots of people that love me and are saying lots of prayer for my little girl and my family and that means so much. I could do this without them. Before they came I picked up my scriptures and searched for strength, comfort, hope, faith, miracles, endure and healthing of the sick. I found a scripture that touch me that I would like to share.
Psalms 18:2 The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in Whom I trust; my buckler, and the horn of my salvation, and my high tower.
This scripture gave me peace like I haven't had in almost a week. He is what comforts me in my time of need. My faith is what gets me threw. I have seen him works miracles. I finally found peace with LaRae's new medical condition. My Heavenly Father is the only one that could of help me with this. I was so devasated from the news no one could help me. It feels good to be at peace with it. God Bless everyone for your prayers.
Please keeps LaRae in your prayer we have along road ahead of us. Keeping her health until Jan 3. will be hard. I am thinking about doing a public caring pages for her called amazing LaRae
Dr. Campbell came back in, which seem like an eternity, told me that the syrnix was worse. He had hoped it this was not the case. Said that since she is having symptons they will have to address it there is a but coming. The only problem is it's not going to be an easy fix. They can't drain the fluid because there is still not enough, however, they can't leave it untreated because it could cause nerve damage as the fluid collects. He also said that if the syrnix is getting larger it from another underlining problem. Here's the catch where her syrnix is it's from what is called a tethered cord. They ruled this out last Nov with the first MRI because they could see it. Nov that the fluid is collecting it's what they call a grey area where the cord might be tethered and it doesn't show on the MRI and they can only go by symptons.
It get complaicated for doctors what to do. So we had to out weigh the risk and our only option was to schedule Larae for Surgery to untethered the cord, hope that is the problem and that the fluid reabsobs into body. It was a very hard decsion for us to make. It was the saves out of all the options we had.
Her surgery is schedule for Jan 3, 2011 at DuPont Hospital for Children. She will be in the PCAU after surgery for a few hours, then in the PICU for 24 hours and then in a her own room hopefully for at least 3 days. We hope everything goes well. She has a low IGA which is part of her ummun system so ever time she goes in the hospital she comes out sick. So I worry about her being in over long period of time.
I am very nervous about this up coming surgrery. I am getting her a blessing. I have realized that I need to give this to my Heavenly Father and let him help me threw this. I need to be strong for her and my family. I haven't been able to do that at this point untill yesterday I had to underful sister from my church visit me. They brought us dinner and just coming and seeing me. They took time out their busy schedules to see what I needed I really thought at the sight of them I would lose it and break down and cry. I held it together. It let me know that that I can do this and it might feel like I am going threw this all alone and know close to me understands, however, I have lots of people that love me and are saying lots of prayer for my little girl and my family and that means so much. I could do this without them. Before they came I picked up my scriptures and searched for strength, comfort, hope, faith, miracles, endure and healthing of the sick. I found a scripture that touch me that I would like to share.
Psalms 18:2 The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in Whom I trust; my buckler, and the horn of my salvation, and my high tower.
This scripture gave me peace like I haven't had in almost a week. He is what comforts me in my time of need. My faith is what gets me threw. I have seen him works miracles. I finally found peace with LaRae's new medical condition. My Heavenly Father is the only one that could of help me with this. I was so devasated from the news no one could help me. It feels good to be at peace with it. God Bless everyone for your prayers.
Please keeps LaRae in your prayer we have along road ahead of us. Keeping her health until Jan 3. will be hard. I am thinking about doing a public caring pages for her called amazing LaRae
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