LaRae has been moved from the PICU to the regular floor. She should be home by Thursday or Friday. She still has to late flat and still for another 24 hours. Her pain is under controll. The only time we have problems with her staying still is when the doctors and nurses come in and do something to her.
We did have to move once already. We had a problem with the our first room. She was roomed with a teenage girl that was having family problems and it wasn't a good situtation. We had LaRae moved since they kept waking LaRae up. Now LaRae is roomed with a little girl that seems to be really sweet and this family is quiet.
Quintin has headed for home so my mom can go to work tomorrow.
Tuesday, January 4, 2011
LaRae's surgery is done
Sorry it took so long to give anyone any news since yesterday. LaRae is doing good and surgery went fine. We had some problems when she hit the PACU and I haven't had time to update. The Doctors and nursers wanted her to sleep at least a 1 1/2 hour after surgery. Well let me tell you that didn't happen. She was raring to go 10 min after she got to the PACU. I will explain everything that has happen since my last posting at 11:40 am on1/3/2011.
At 12:45 Dr. Campbell came out aid she did well and the surgery went well. He explained that they release the cord. There is a but coming, he said he didn't not know for sure if it was tethered. He did released the cord any way hoping that the will help with the syrinx.
LaRae's out come is this.
1. LaRae will have to have MRI's every 6 months.
2. The nerve damage in her legs probably is permanent.
3. They might have to put a permanent shunt in the spine.
Even with know all of this we are stay positive she is Heavenly Father hands and he knows the out come of all of this. My family, friends and our faith will get us threw this.
When LaRae come out surgery they decided not to keep her on a vent. They thought she would sleep most of the anesthesia off that didn't happen she woke up 10 minutes after being in the PACU. She was supposed to go right to the PICU. Since there were no available beds yet we had to wait in the PACU. When LaRae woke up she woke up violently. It was not a good thing since she needs to lay flat and still. They had to move her to my lap and I had to keep her no higher the 30 degrees. I had to hold her chest down and Quintin had to keep her from kicking her legs this went on for 3 to 4 hours and I couldn't move at all or she would wake up.
At 5:30 pm a bed finally became available in the PICU. They changed her pain meds that seems to be working better. She is laying still and sleeping a lot. Things are better and she is doing better. She will be move to a regular room some time today 1/4/2011. That's all I have for now.
LaRae 20 hours after surgery
LaRae awake from the nurses messing with her not happy.
Monday, January 3, 2011
LaRae's Surgery Updare 11:40am
Nurse came out and said LaRae is doing OK. They just made the incision. She will be in another 1 hour and 15 mins. The nurse also told us that they are taken her directly to the PICU unless her room isn't ready then she would have to stay in the PACU for a while. The nurse will come back out will one more time with an update. They did have to pre-treat her with steroids and a Neb treatment before surgery because of what happen after the MRI. They don't what to take a chance of aggravating the airway.
LaRae surgery news.
She is in surgery. LaRae, Quintin and I got blessing last night. I know Heavenly Father is watching over her right now. I am still scared and worried. It is really hard not to be as much as I try not be. I have never seen Quintin worry before and he is even worry this time. She was cute after they gave her the vercet. She got all dopey and silly. I really thought I was going to cry when the surgical team carried her away she smiled and we told her we loved her and said good bye sweetie. Now we wait. Hopefully I can get the pictures to upload later.
Thursday, December 30, 2010
Pre-Admission Testing
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.
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 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
Tuesday, November 30, 2010
LaRae's MRI
LaRae is in now having her MRI done. I am waiting for it to be over. I am very nervous. They decided this time to put a tube in her throat to protect her airway. The risk of her aspirating is still too high. So recovery will be longer and she will go up in the surgical suite. I really hope this gives us the answers we are looking for. We will see Dr. Campbell right after the MRI at 1:00 pm. We won't have to wait long for some news. At least I didn't cry this time when they carried her away.
I am grateful to have wonderful friends and family, that are so willing to help me out with my three other kids. So, that I can be here and not worry about what is going on at home, and for that I am grateful.
My faith and love in my Savior is what helps me get threw days like today.
I am grateful to have wonderful friends and family, that are so willing to help me out with my three other kids. So, that I can be here and not worry about what is going on at home, and for that I am grateful.
My faith and love in my Savior is what helps me get threw days like today.
Friday, November 12, 2010
Sorry for no news!!!
Things have be crazy in the Lawley house. One medical problem after another good news and bad for both LaRae and mom. Sorry to keep everyone in the dark, however when mom is sick nothing gets done and the blog is the last thing that is on the list. All the computer crashed too so we had to buy a new one. I happy to anounce that I am starting a family blog so at this point forward this blog will only be about LaRae's medical journey and anything to do with medical stuff I guess you could say. I will link both blogs at the top of each blog so it's easy to move between the two of them. The one other thing that will make life easier is I have new softwear to help with blogging so I don't have to type so much. So thanks so much for following LaRae's journey. Hope to post more soon.
She does have a MRI of her spine coming up on Nov. 30 that we are very wottied about. She is having problems with her left side of her spine from the middle of her back to her foot. They are worried that the syrnic his getting bigger. I am like always staying postive. When I look at her she gives no reason not to. She has such a spark in her eye. Until I know more......
She does have a MRI of her spine coming up on Nov. 30 that we are very wottied about. She is having problems with her left side of her spine from the middle of her back to her foot. They are worried that the syrnic his getting bigger. I am like always staying postive. When I look at her she gives no reason not to. She has such a spark in her eye. Until I know more......
Wednesday, August 25, 2010
Swallow test results unofficially
LaRae unofficially passed her swallow study. It was comical watching the tech and doctor trying to get LaRae to eat barium cover food willing. She was not having any part of it. The test didn’t go as well as it could of. They needed her to cough on food while doing the test and that didn’t happen. They did find out that her air was being protect when she eats. That was main thing they need to know. After the test was over and they gave her cup back, she did have one of her coughing episodes. Their conclusion was that she drinks too quickly and it pools in the back of her throat it's because she can’t swallow fast enough to catch up with what her mouth is taken in. That causes her to cough. In a nutshell, she is delay in her eating habits like everything else and with time, she will catch up. LaRae just has poor table etiquette.
Now I need to get the official report from the GI doctor. LaRae should be clear for surgery I hope with in the week. We have to get the C-diff test out of the way hopefully this week and we should be good to go.
Thursday, August 12, 2010
1K walk with Luca "Lazylegz" Patuelli
Please take the 5 minutes to watch this inspirational video. Luca Patuelli has Arthrogryposis in his lower limbs. He did a 1K walk with no crutches or braces at the AMC Convention in Disney this year. It was amazing to watch. I'm proud to be able to share this with everyone who checks my blog. I hope my daughter has this much determination as the years goes on. I am so lucky to say that I have had the chance to met this amazing guy. He has a big heart and more will power then I have ever witness in anyone ever before. If he can do that then we have no excuses at all.
No Excuses, No Limits!
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