We've had some pretty rough days lately. Lots of draggy lethargic days for Hannah. The last couple of days I've been ready to tear my hair out. The pharmacist didn't know how to dial down Hannah's diastat prescription. I explained it to two different pharmacists and it just wasn't getting through. I was down to one diastat at home and don't like to get that low. They kept telling me to come back the next day. Talk about frustrating! I would have went behind the counter and did it myself had I not feared being arrested! Uggggh! Then yesterday Billie was taking her meds and got choked on one. I'm talking she got CHOKED on one. She couldn't breath and was mouthing the word "water". I was afraid she'd pass out before I got back with waters so I had to make her stand up and do the himlick on her. After three thrusts she was able to breath. Then we got her some water. I told her that she and Hannah just were not going to be happy until they killed me. LOL! Then last night Hannah went to bed really well and about 9:30 starting coughing. At 10:30 she threw her guts up all over our bedding. No fun that is for sure.
Today however was a better day. At least to this point, and I'm goign to believe it'll end on a good note. Hannah and I went to the post office and Wal-mart this morning before it got to hot. She really enjoyed it and I enjoyed watching the joy she brought to people that interacted with her. It's hard to explain the draw she has. She just brightens people's day when they get to be around her. Despite everything this little girl has been through she's happy. I hope she never loses that happiness.
The next few weeks are full of appointments and getting ready for school to start again. I think I'm ready for it. I know Hannah is. She has missed school and her friends.
Thanks for your continued prayers and support. Please keep them coming. We do not know what tomorrow holds, but I know that as long as we have people praying we're gonna be alright.
Wednesday, July 30, 2008
Saturday, July 26, 2008
Another Seizure
We were awaken to a hollor and a seizure this morning around 8:30 a.m. It lasted about 4 minutes. I gave diastat at 3 minutes and she started coming out of it at 3 1/2 minutes. We called emt's at 3 minutes because I wasn't sure she was coming out of it. I couldn't chance another bout of 2 1/2 hour status. They arrived and took her on to the ER and she was checked out. She didn't have anymore while we were in ER. Everything checked out o.k. and we were allowed to come home. She's resting now on our bed with all of us diligently keeping watch.
The neuro decided to go ahead and go up on her lamictal today instead of waiting until tomorrow. So, today we took 12.5 mg's this morning and will take another 12.5 mg's tonight. She was very lathargic yesterday and I had a feeling things just weren't right.
Please continue to keep her in your prayers. This is so hard on her little body. Also, please pray for David, I, and the boys. We're all emotionally spent and David and I aren't sleeping well. We're exhausted.
The neuro decided to go ahead and go up on her lamictal today instead of waiting until tomorrow. So, today we took 12.5 mg's this morning and will take another 12.5 mg's tonight. She was very lathargic yesterday and I had a feeling things just weren't right.
Please continue to keep her in your prayers. This is so hard on her little body. Also, please pray for David, I, and the boys. We're all emotionally spent and David and I aren't sleeping well. We're exhausted.
Friday, July 25, 2008
Still Improving....
Thank you for your continued prayers. We had a follow up appointment yesterday and she still looked good. Hannah is very tired still and runs out of energy quickly, but that gets better everyday. We see the neurologist on Monday. So far she's doing o.k. on the Lamictal. No allergic rash. Please keep this in your prayers. Everything I've read about this med has been good. The only problem is that some people develop an allergy and can't take the med. We don't want that to happen to Hannah. We will be following up with her pediatrician next week too.
I got a couple of replies on the epilepsy board I'm a member of that just confirms that we got a miracle. One mom said, "My son's first recognized seizure was also status, but it was much shorter. Still, it took him a few weeks to be able to walk and speak properly again. You have a miracle girl there!" Another mom said, "I am so thankful that your daughter is doing well. I will tell you that you have a miracle!!!!!!!! I had to read your post as my Hannah had a status seizure out of the blue that lasted 1 hour and 55 minutes. She can no longer walk or talk. You are truly blessed!!!!!!! " We remain ever so grateful our girl pulled through this the way she did. We thank God continuously and we thank y'all for praying with us.
Right before all this, Hannah had a really fun week. She had gone to VBS a few days at FBC. A couple of her teacher's go there and they worked it out where I could go with her and assist Hannah as needed. Hannah really enjoyed it, especially rec time and rally time. Everyone was so kind to us and let me do whatever I needed to do to help Hannah participate. Hannah has also been doing aquadic therapy every Saturday in Euless. She LOVES it. David and Hannah do the therapy together and it's become something she loves to do with her daddy. It's alot of fun to watch her because she just gets to be herself. Everyone there has disabilities so there is no trying to fit into a typical world. She just gets to be Hannah, and Hannah is an awesome person!(yeah, I'm biased)
I am calling an ARD to go over some things. First, I want to go over her emergency care plan because now that she's went status there are a few changes. Then I want to have her reaccessed by the therapist because she may need more therapy than before. We also need to start discussions about her dog she is getting in a little over 7 mths! Can you believe it? Only 7 mths to go.
Central Baptist is doing a fund drive to help with our expenses to training and supplies for the dog. That is scheduled for Sept. 6th. I'll be glad because my garage is full of stuff for the sale. It's been so nice to know that I won't have to figure this out on my own. Rachael and all the people she has approached to help have been FABULOUS!
Our family is slowly getting settled again. I think David and I have suffered a little PTS. Neither of us have slept much and we find each other awake and staring at Hannah. Don't get me wrong, I know we got a miracle and we are rejoicing. However, the experience was a traumatic one and we are recovering with God's help.
Please continue to pray for Hannah as she recovers. Thank you again so much!
I got a couple of replies on the epilepsy board I'm a member of that just confirms that we got a miracle. One mom said, "My son's first recognized seizure was also status, but it was much shorter. Still, it took him a few weeks to be able to walk and speak properly again. You have a miracle girl there!" Another mom said, "I am so thankful that your daughter is doing well. I will tell you that you have a miracle!!!!!!!! I had to read your post as my Hannah had a status seizure out of the blue that lasted 1 hour and 55 minutes. She can no longer walk or talk. You are truly blessed!!!!!!! " We remain ever so grateful our girl pulled through this the way she did. We thank God continuously and we thank y'all for praying with us.
Right before all this, Hannah had a really fun week. She had gone to VBS a few days at FBC. A couple of her teacher's go there and they worked it out where I could go with her and assist Hannah as needed. Hannah really enjoyed it, especially rec time and rally time. Everyone was so kind to us and let me do whatever I needed to do to help Hannah participate. Hannah has also been doing aquadic therapy every Saturday in Euless. She LOVES it. David and Hannah do the therapy together and it's become something she loves to do with her daddy. It's alot of fun to watch her because she just gets to be herself. Everyone there has disabilities so there is no trying to fit into a typical world. She just gets to be Hannah, and Hannah is an awesome person!(yeah, I'm biased)
I am calling an ARD to go over some things. First, I want to go over her emergency care plan because now that she's went status there are a few changes. Then I want to have her reaccessed by the therapist because she may need more therapy than before. We also need to start discussions about her dog she is getting in a little over 7 mths! Can you believe it? Only 7 mths to go.
Central Baptist is doing a fund drive to help with our expenses to training and supplies for the dog. That is scheduled for Sept. 6th. I'll be glad because my garage is full of stuff for the sale. It's been so nice to know that I won't have to figure this out on my own. Rachael and all the people she has approached to help have been FABULOUS!
Our family is slowly getting settled again. I think David and I have suffered a little PTS. Neither of us have slept much and we find each other awake and staring at Hannah. Don't get me wrong, I know we got a miracle and we are rejoicing. However, the experience was a traumatic one and we are recovering with God's help.
Please continue to pray for Hannah as she recovers. Thank you again so much!
Tuesday, July 22, 2008
We're Home....
This post may be long. I apologize ahead of time. There is just no way to post my thoughts on this without really posting my thoughts on this. I'm so thankful we're all home. Hannah was extremely happy to see Kyle, Zachary, & nanna. She's settled right into he old routine and is quite happy to be home.
When the PT-ist came this morning to do Hannah's PT-apy she saw a totally different child than the one that was assessed the day before. The treatment plan was an hour of PT everyday. Well, all the concerns from the day before were no longer there today. Basically we're just going to watch her and work with her and she may get PT a couple times a week at the most.
We follow up with the opthamologist on the 19th of August. Today he said everything looked good.
The infectious disease specialist feels like Hannah had some virus's brewing in her system. She feels like even though Hannah's strep culture was negative that Hannah had strep. She also has what they call "microplasma", which is a virus most people get every year or two. Normally that is treated with zithromax or drugs in that family of drug, but Hannah is allergic to it so we are watching her closely and letting it run it's course. It's not contagious or life threatening. She felt like Hannah was at the tail end of the virus anyway. So, the theory is that these things were brewing in Hannah's system and they set off the seizure. We'll follow up with Hannah's pediatrician on Thursday.
To help hopefully keep that from happening in the future the neurologist added Lamictal. Since the theory is that these virus' set this whole thing off, the added seizure med will hopefully give her enough help should her system ever be bombarded like this again. We follow up with the neurologist on Monday.
We follow up with the opthamologist on the 19th of August. Today he said everything looked good.
The infectious disease specialist feels like Hannah had some virus's brewing in her system. She feels like even though Hannah's strep culture was negative that Hannah had strep. She also has what they call "microplasma", which is a virus most people get every year or two. Normally that is treated with zithromax or drugs in that family of drug, but Hannah is allergic to it so we are watching her closely and letting it run it's course. It's not contagious or life threatening. She felt like Hannah was at the tail end of the virus anyway. So, the theory is that these things were brewing in Hannah's system and they set off the seizure. We'll follow up with Hannah's pediatrician on Thursday.
To help hopefully keep that from happening in the future the neurologist added Lamictal. Since the theory is that these virus' set this whole thing off, the added seizure med will hopefully give her enough help should her system ever be bombarded like this again. We follow up with the neurologist on Monday.
This whole experience was one of amazement. I've never been so scared in my life. I thought we were losing our girl. However, I have never seen God's hand so obviously on a situation from beginning to end. I am not even sure I can put what I feel into words or how this experience has changed my life. When David and I arrived at the hospital in Hillsboro and they told me she was still seizing and was going to be care flighted to Fort Worth my heart nearly stopped. The doctor let us see her before they took her on the flight and tried to prepare me for what we would see, but there was no way they could have prepared a parent for what we saw. Hannah was on life support and they had given her a paralyzing drug so her eyes were open but she wasn't moving. We needed a miracle. Every step of the way people prayed. Prayers were focused and one at a time they were answered. The doctors, nurses, therapists, everyone is in awe at Hannah's recovery. We got a miracle.
I've been on a personal journey of discovery for a few years now. I recently came to realize that I can give God the trust I have, even when it's not alot, and he can do great things with that trust. I just have to give Him what I have. What I have is enough. I see how it works now. You give Him what you have and He builds it. I'm so glad He can build things out of near nothing.
Thank you all for your prayers. I know that God heard and he answered. He healed our sweet little Hannah and I'll never let her forget that people all over the world prayed for her healing.
I'll leave ya with Hannah' s new favorite song...and a picture of course.
Be Blessed:
Be Blessed my brother
Be Blessed my sister
Be Blessed wherever
This life leads you
Let me encourage you
Let me speak life to you
You can depend on God
To see your through
You can depend on me
To pray for you
You might be hurting
You might be crying
You might be worrying
And frustrated too
Let me encourage you
Let me speak life to you
You can depend on God
To see you through
You can depend on me
To pray for you
I see you in THE future
And you look better
You're walking in favor
And prosperity too
Let me encourage you
Let me speak life to you
you can depend on God
To see you through
You can depend on me
To pray for you
I'll pray for you
You pray for me
And watch God change things
I'll pray for you
You pray for me
And Watch God change things
I'll pray for you, You pray for me, And watch God Change things
Saturday, July 19, 2008
Update
Hi all. I apologize for the lapse between updates. Things just got really hectic yesterday evening. I'll start with good news. We're out of the PICU unit and in a private room. We were moved to the 4th floor room p-405 around 9:30 last night. It's a great room and Hannah seems much more comfortable. She's slept well. We slept more than we did in PICU and it's just overall and easier place to be.
Thanks to all my pals that took food to my house for the guys and Billie yesterday. Zachary was VERY excited about the chocolate chip cookies. I don't buy them because he eats them up too QUICKLY. LOL!
Yesterday was a whirlwind. Hannah had a few visitors. Mrs. Wheeler(Hannah's first and the most fabulous teacher), Bro. Strawn and my brother Mike came by. She was friendly enough with them and responded but yesterday was just an overall day of irritation. Kyle came up and stayed with us last night and that made Hannah quite happy. She interacted with him well and sang her spanish songs, etc. with him.
Healthwise everything is in the air. About the time they THINK they know what is up, they test to confirm, and find that it isn't what they thought. The opthamologist came by yesterday evening, dilated Hannah's eyes and took a look. He said that her optic nerve is a little swollen but that is not uncommon with status seizures. They brought an infectious disease specialist and she is seeing Hannah but she is basically on for precautionary measures because the exam she did didn't lead her to believe anything serious infectionious disease wise was going on. They thought she may have strep because she has puss pockets on her tonsils but the strep screening came back negative. The trauma team is also on her case because she has a nasty knot on the side of her head and abrasions and bruises on her right upper arm. They are watching for some kind of internal injury because she had a little blood in a couple of the urines they did. Yesterday they wanted to reintubate her and do a scan, but I asked for an alternative approach. We just got her extubated and I really wanted her to get a break. So, they came back with an alternative plan and are just watching labs for signs that there may be a problem internally.
I do believe we got our miracle. I know things are still dire and we need God's help and guidance. Especially on the unknowns. However, her brain functions are all totally normal and she is functioning just like she was before the status seizure. Best of all there have been no more seizures. There is a new song that Hannah LOVES. It's called "Be Blessed". Her favorite part says...."I'll pray for you, you pray for me, and watch God change things!" She and I have made up hand motions to it and yesterday she looked at me and said...."I'll pray for you...." so we began singing it and doing our hand signals as best we could. I take her hands in mine and put them on her chest and say..."I'll pray for you...", then I put them on mine and we sing..."you pray for me..." and then we raise are hands in the air together and say "watch God change things!" All the way to Cooks the other day David and I played that song over and over. There is a verse that begins and it says...."I see you in the future and you look better, your walking in favor and prosperity too...." We sang..." I see Hannah in the future and she looks better, she's walking in favor and prosperity too!" I just believe that we witnessed God do some changes of circumstances and this situation because we prayed and y'all prayed and God was able to work.
Thank you so much.I know I'm rambly this morning. I just woke up full and thankful and so in awe of God's grace and love! I heard my baby ask God to touch her body and I'll never let her forget that God did just as she asked him to. And I'll make sure she knows that people all over the world cared and reached out to God on her behalf.
Doctors coming I'll update soon
Thanks to all my pals that took food to my house for the guys and Billie yesterday. Zachary was VERY excited about the chocolate chip cookies. I don't buy them because he eats them up too QUICKLY. LOL!
Yesterday was a whirlwind. Hannah had a few visitors. Mrs. Wheeler(Hannah's first and the most fabulous teacher), Bro. Strawn and my brother Mike came by. She was friendly enough with them and responded but yesterday was just an overall day of irritation. Kyle came up and stayed with us last night and that made Hannah quite happy. She interacted with him well and sang her spanish songs, etc. with him.
Healthwise everything is in the air. About the time they THINK they know what is up, they test to confirm, and find that it isn't what they thought. The opthamologist came by yesterday evening, dilated Hannah's eyes and took a look. He said that her optic nerve is a little swollen but that is not uncommon with status seizures. They brought an infectious disease specialist and she is seeing Hannah but she is basically on for precautionary measures because the exam she did didn't lead her to believe anything serious infectionious disease wise was going on. They thought she may have strep because she has puss pockets on her tonsils but the strep screening came back negative. The trauma team is also on her case because she has a nasty knot on the side of her head and abrasions and bruises on her right upper arm. They are watching for some kind of internal injury because she had a little blood in a couple of the urines they did. Yesterday they wanted to reintubate her and do a scan, but I asked for an alternative approach. We just got her extubated and I really wanted her to get a break. So, they came back with an alternative plan and are just watching labs for signs that there may be a problem internally.
I do believe we got our miracle. I know things are still dire and we need God's help and guidance. Especially on the unknowns. However, her brain functions are all totally normal and she is functioning just like she was before the status seizure. Best of all there have been no more seizures. There is a new song that Hannah LOVES. It's called "Be Blessed". Her favorite part says...."I'll pray for you, you pray for me, and watch God change things!" She and I have made up hand motions to it and yesterday she looked at me and said...."I'll pray for you...." so we began singing it and doing our hand signals as best we could. I take her hands in mine and put them on her chest and say..."I'll pray for you...", then I put them on mine and we sing..."you pray for me..." and then we raise are hands in the air together and say "watch God change things!" All the way to Cooks the other day David and I played that song over and over. There is a verse that begins and it says...."I see you in the future and you look better, your walking in favor and prosperity too...." We sang..." I see Hannah in the future and she looks better, she's walking in favor and prosperity too!" I just believe that we witnessed God do some changes of circumstances and this situation because we prayed and y'all prayed and God was able to work.
Thank you so much.I know I'm rambly this morning. I just woke up full and thankful and so in awe of God's grace and love! I heard my baby ask God to touch her body and I'll never let her forget that God did just as she asked him to. And I'll make sure she knows that people all over the world cared and reached out to God on her behalf.
Doctors coming I'll update soon
Thursday, July 17, 2008
PICU Stay
Hi all. Hannah had a seizure at 8:25 a.m. and went into status elipitus. She was careflighted from Hill Regional in Hillsboro to Cook's Children's in Fort Worth. They have her on ventilator and a 24 hour EEG. She has not woke up yet. When she does they want to remove the vent and see if she can breath on her own. She is running fever so they did a lumbar punture. We only have preliminary results at this time and they weren't bad, but the doctor said that the full results could still show something. We have a care page set up. You can go to http://www.cookchildrens.org/ and click on the patient visitor tab. Then go down to care page and when you visit put in hannahchap (all one word)
Here are a few pictures. They are disturbing so be prepared.
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