It seems like each hour Kylie just gets better and better. People are praying from one side of this country to the other and He has answered. One of the most awesome blessings has been Kylie's positive attitude. She is so at ease to tell you that she is "just better." "It's just different this time," is said quite a lot in room 338.
The doc came in this morning and was very pleased that Kylie has cleared the last few things off her "To Do" list in order to leave the hospital. The pain is totally under control. She is taking one pain pill by mouth and alternating that with Motrin. This seems to keep her very comfortable and she is highly functional. Her appetite has been very good, and has had absolutely no nausea. The incisions are healing well...just all around doing great!
HEB sponsored a Trick-or-Treat event and Fall Festival at the Children's Hospital. She had a great time and was up and around inside and outside for about 2 hours. Typically after being up for any length of time will leave her with an excruciating headache. When they got back to the room she said she only had a minor headache and laid down to rest. This is a HUGE improvement! Karli said this event was wonderful the kids got all kinds of goodies like soap, hygiene items, shoes, shirts, and much more. This event was definitely geared towards items kids and families would need while in the hospital. It brought Karli to tears to see all the kindness and generosity of others.
If nothing changes Kylie will be home later this afternoon. She is not going to be allowed to go out for Halloween (thankfully she got to go today). If you are out with your kids trick-or-treating stop by the Reagan's and get some of Kylie treats.
Karli will continue this blog to keep everyone informed about Kylie's recovery. It was an honor to be able to help her pass along this information. From the bottom of my heart I want to thank each and every person who has prayed, sent cards, helped with Joshua, and on and on and on. My sister and her family are blessed to have so many wonderful friends.
-melissa callan
Kylie's SUPER HAPPY MiMi!
Friday, October 30, 2009
Thursday, October 29, 2009
Going home tomorrow...
Good afternoon friends!
I wanted to let you know that Kylie is doing really good today. She had a rough night last night with a lot of pain. The doc told Karli today that is to be expected as they put a nerve block in at surgery that wears off about 24 hours post op. Here's some of the good news about her progress...
I wanted to let you know that Kylie is doing really good today. She had a rough night last night with a lot of pain. The doc told Karli today that is to be expected as they put a nerve block in at surgery that wears off about 24 hours post op. Here's some of the good news about her progress...
- The IV meds have been discontinued. She has to be able to tolerate the meds orally and then she can go home.
- She is eating well and has no nausea at all.
- She had a scan and it appears the shunt is in the right place and all looks GREAT!
- If she has a good day and continues to improve she can go home tomorrow!
- This morning she received 62 get well cards via the Dell Children's ecards. She has been so excited to hear all the well wishes and prayers from her friends and family.
With Kylie possibly going home tomorrow she is well aware that Saturday is Halloween. She begged the doc to allow her to trick or treat, but he said the risk of falling and injury is just too high. Her plans are to be at home handing out candy, so if you are out trick-or-treating STOP BY! She misses her house and all her friends and family.
Please keep Kylie in your prayers, she still has a long way to go to recovery. We are praying some of the recovery problems she had with the last surgery won't be an issue this time since the shunt appears to be draining properly. It's in God's hands now.
Thankful for all the prayers and especially all the ANSWERED prayers...
-melissa callan
Wednesday, October 28, 2009
A beautiful morining....
Good morning friends! After a rough night, Kylie is feeling much better this morning. She had an adverse reaction to an antibiotic last night. They are pretreating her doses of antibiotics with a dose of benadryl to counteract the reactions. Just as I got off the phone with Karli at 11:30 she was finishing her last dose.
This morning she is still in quite a bit of pain, but is happy and optimistic about her recovery. She ate a good dinner and breakfast this morning. So far she hasn't been on any medication for nausea since surgery.
We are all so happy to see her positive attitude and smile again. She told my mom, "Granny I just think I'm healed this time!" Kylie told her mommy, "I felt Jesus in the recovery room. I didn't see anyone but I felt someones arms around me and just felt calm. " She said her head feels clear and much easier to think. She feels like she's not in the fog anymore. This is such a good sign for her recovery. The increased pressure made it hard for her to think, leaving her in a constant foggy state.
She has a long way to go, there are many other clinical "hurdles" to cross...but with a positive attitude and a fighters will--SHE CAN DO IT! This Reagan family has been through so much, their will and spirit is unbreakable. With the Lord by her side she will make it through this tough time--this is our prayer.
To anyone who is not of FaceBook I wanted to pass along this website to send Kylie an eCard to her hospital room. She loves receiving these cards from all. Your words of encouragement mean so much to her! Click on this link and send the card to room 338. http://www.dellchildrens.net/patient_get_well_cards If you have any problems or questions you can contact me at melcallan@msn.com.
Your continued prayers and support are much appreciated!
Have a blessed day...
-melissa callan
This morning she is still in quite a bit of pain, but is happy and optimistic about her recovery. She ate a good dinner and breakfast this morning. So far she hasn't been on any medication for nausea since surgery.
We are all so happy to see her positive attitude and smile again. She told my mom, "Granny I just think I'm healed this time!" Kylie told her mommy, "I felt Jesus in the recovery room. I didn't see anyone but I felt someones arms around me and just felt calm. " She said her head feels clear and much easier to think. She feels like she's not in the fog anymore. This is such a good sign for her recovery. The increased pressure made it hard for her to think, leaving her in a constant foggy state.
She has a long way to go, there are many other clinical "hurdles" to cross...but with a positive attitude and a fighters will--SHE CAN DO IT! This Reagan family has been through so much, their will and spirit is unbreakable. With the Lord by her side she will make it through this tough time--this is our prayer.
To anyone who is not of FaceBook I wanted to pass along this website to send Kylie an eCard to her hospital room. She loves receiving these cards from all. Your words of encouragement mean so much to her! Click on this link and send the card to room 338. http://www.dellchildrens.net/patient_get_well_cards If you have any problems or questions you can contact me at melcallan@msn.com.
Your continued prayers and support are much appreciated!
Have a blessed day...
-melissa callan
Tuesday, October 27, 2009
Kylie is OUT of surgery!
Praise the Lord, Kylie is out of surgery!
In the last few minutes the doc came out and let the family know that he has put the new shunt in Kylie's spine and surgery is finished. He said that the shunt that was put in last week was not working properly, "it just wasn't the shunt for her." There were no apparent leaks but the shunt just wasn't draining properly. This let the fluid build up and create pressure and swelling in the spine and head.
Now Kylie will stay at Dell Children's for 2-3 days post op to recover. She will be in recovery for a while and probably not be back in her room until later tonight. Thanks for all the prayers....we aren't out of the woods yet but hopefully well on our way to getting this sweet angel back on her feet. God is GOOD!
-melissa
In the last few minutes the doc came out and let the family know that he has put the new shunt in Kylie's spine and surgery is finished. He said that the shunt that was put in last week was not working properly, "it just wasn't the shunt for her." There were no apparent leaks but the shunt just wasn't draining properly. This let the fluid build up and create pressure and swelling in the spine and head.
Now Kylie will stay at Dell Children's for 2-3 days post op to recover. She will be in recovery for a while and probably not be back in her room until later tonight. Thanks for all the prayers....we aren't out of the woods yet but hopefully well on our way to getting this sweet angel back on her feet. God is GOOD!
-melissa
Monday, October 26, 2009
Monday evening update
Just a quick update about Kylie. The doc has postponed her surgery until tomorrow 10/27/09 at 3:00pm. There is no specific reason except since he is a neurosurgeon cases are probably taken on a need basis. Since Kylie is in the hospital and stable her time can be bumped for another more immediate case.
The boys and I (Zoey and Granny too) went up to see her this afternoon. She was in very good spirits and happy to get up and spend time with the kids. They went to the playroom and had lots of fun, but Kylie tired very easily. It was a real blessing to see her smiling again, for a moment we could forget all that has consumed us for so many days.
As soon as Kylie is out of surgery I'll be updating the blog. Karli and Josh are so thankful for everyone who is praying and sending cards to Kylie. We are praying for the doctor, that the Lord will guide his hands and his decisions so he can do his part to heal Kylie. We pray that soon she will be back to the full of life little girl chasing around her pig Slippy. This is such a strain for their family that they can all be back at home soon.
Melissa Callan - Karli's sister
melcallan@msn.com - feel free to contact me anytime.
The boys and I (Zoey and Granny too) went up to see her this afternoon. She was in very good spirits and happy to get up and spend time with the kids. They went to the playroom and had lots of fun, but Kylie tired very easily. It was a real blessing to see her smiling again, for a moment we could forget all that has consumed us for so many days.
As soon as Kylie is out of surgery I'll be updating the blog. Karli and Josh are so thankful for everyone who is praying and sending cards to Kylie. We are praying for the doctor, that the Lord will guide his hands and his decisions so he can do his part to heal Kylie. We pray that soon she will be back to the full of life little girl chasing around her pig Slippy. This is such a strain for their family that they can all be back at home soon.
Melissa Callan - Karli's sister
melcallan@msn.com - feel free to contact me anytime.
Monday, 10/26/09
Good morning! I'm Melissa, Karli's sister and today I'll be updating the blog for Kylies family. On behalf of my family I would like to thank all who are keeping the Reagan Family in your prayers. I know that through God all things are possible. We have so many people praying I'm confident He can't help but listen!
Kylie has been very sick to her stomach today, it seems some glitch in getting her nausea medicine order filled caused her to be off the medication long enough for the effects to wear off. They have the medicine back on board and are confident soon she will feel better soon. This may have been a blessing in disguise....
The neuro doctor came in just before lunch and evaluated Kylie. His recommendation is (since kylie hasn't had anything to eat or drink today) to get Kylie ready for surgery today. They are planning on accessing the possible leak and repairing what is necessary. He also wants to install a "programmable shunt" in her spine and remove the shunt that is now in place.
The new shunt has lots of bells and whistles, but the reason this is his choice for Kylie is that they can control her high's and low's better. The shunt that is in place now works constantly. That is to say if the pressure begins to build the shunt is like a valve and it just drains the excess fluid. The new shunt is going to be programmed to a number (level), when the pressure gets above that number it will drain. Another good feature is that programming can be done whenever necessary and is not an invasive procedure. It can be done in a special room with some sort of magnet. The details on this are a little unclear but the physicians assistant is coming in soon to clear some of this up.
It seems to the doc that many of Kylies problems are associated with the big highs and lows she is experiencing. At one time she has low pressure headaches, and the next suffering with high pressure. That being said, a programmable shunt is usually not indicated in a case like Kylies because the changes happen so often. With all that has been going on with Kylie the doc is confident this is the best option for her.
I will update again later this afternoon.
-Melissa Callan
Kylie has been very sick to her stomach today, it seems some glitch in getting her nausea medicine order filled caused her to be off the medication long enough for the effects to wear off. They have the medicine back on board and are confident soon she will feel better soon. This may have been a blessing in disguise....
The neuro doctor came in just before lunch and evaluated Kylie. His recommendation is (since kylie hasn't had anything to eat or drink today) to get Kylie ready for surgery today. They are planning on accessing the possible leak and repairing what is necessary. He also wants to install a "programmable shunt" in her spine and remove the shunt that is now in place.
The new shunt has lots of bells and whistles, but the reason this is his choice for Kylie is that they can control her high's and low's better. The shunt that is in place now works constantly. That is to say if the pressure begins to build the shunt is like a valve and it just drains the excess fluid. The new shunt is going to be programmed to a number (level), when the pressure gets above that number it will drain. Another good feature is that programming can be done whenever necessary and is not an invasive procedure. It can be done in a special room with some sort of magnet. The details on this are a little unclear but the physicians assistant is coming in soon to clear some of this up.
It seems to the doc that many of Kylies problems are associated with the big highs and lows she is experiencing. At one time she has low pressure headaches, and the next suffering with high pressure. That being said, a programmable shunt is usually not indicated in a case like Kylies because the changes happen so often. With all that has been going on with Kylie the doc is confident this is the best option for her.
I will update again later this afternoon.
-Melissa Callan
Saturday, October 24, 2009
dr update
the Dr just came in and said today is test day.. we are going to push her hard, get her up for 45 minutes then down for an hour and repeat. If she cant tolerate it she will have surgery in the morning.
God, here is the chance to give an ounce of grace. Heal her please!! I know surgery might be the way you want to heal her, and we are ok with either way. But if you could we will take no surgery and you show a HUGE miracle in her that we could SHOUT from the mountain. One that would leave Dr, surgeon, and nurses in awe of your power and might. Please give her a testimony of a miracle that you blessed her with. So for the rest of her life she can sing your praise and not doubt you. We WILL PRAISE YOUR NAME!
Praying Together,
Karli & Josh Reagan
Joshua Jr
God, here is the chance to give an ounce of grace. Heal her please!! I know surgery might be the way you want to heal her, and we are ok with either way. But if you could we will take no surgery and you show a HUGE miracle in her that we could SHOUT from the mountain. One that would leave Dr, surgeon, and nurses in awe of your power and might. Please give her a testimony of a miracle that you blessed her with. So for the rest of her life she can sing your praise and not doubt you. We WILL PRAISE YOUR NAME!
Praying Together,
Karli & Josh Reagan
Joshua Jr
10-24-09
Hi all,
All our blessings to day 1st to start with... we have such awesome friends and family being so very supportive. Joshua is feeling much better and enjoying so much needed time with his mawmaw and pawpaw at the deer lease this weekend. Kylie is in very good sprits and mood. Josh got to work a full day today. Kylie was blessed with an amazing home bound teacher that with in 1 hour of meeting with teachers, she headed to the hospital with a bag of blessings for Kylie. She got tons of hand made cards from her school mates, teachers, past teachers, and lots of COOL Giddens Goodies!! All the cards had pigs, poems, prayers, and such kind innocent words on it she cried through out reading them. The home bound teacher is going to be such a blessing. Kylie <3's>
Well after much waiting we saw the asst. to the surgeon tonight about 7. She checked Kylie out and we all have notice today her swelling got worse and at the bottom of the swelling she started bruising. Nurse said that's deep tissue bruising. When she leans over the shunt is sticking out more. So here is the plan the best i can explain it. It is not easy to follow so please post questions and i will do my best to answer them. The surgeon will be her in the morning around 10-12 and will make the final decision of what kind of surgery we will be doing .. here are the options
1. Leak repair- go in and if there is a leak, repair it. It could be leaking the site of the shunt in the spinal cord or the tube which drain the fluid in to the abdomen. This is the leaser of the surgeries and the one we are praying for. which would be causing the fluid to be collecting and cause the swelling.
2. Shunt revision - If when they open her up they find the shunt is not working - being that it is a mechanical device there is a chance it may not be working which is causing the swelling due to high pressure.They would replace the shunt with a new one but the same kind. This would be starting over in her healing process. Not the worst option but not the best.
3. Lumbar Drain - This is where they would go in and remove the shunt and put in a external drain. this would drain in to a bag they would gage the amount and pressure of the cerebral spinal fluid. This would stay in for 2-3 weeks and then be removed and replaced with a shunt, that be decided on per what the drain showed in pressure and the amount. for example she has a medium flow value now that keeps her pressure between 8-10% - they would adjust that as per what the drain results would be. Negatives on this would be she would have to stay in the hospital while the drain was in, this would require 2 surgeries, high risk of infection with drain. Positive we would have the perfect pressure value for her. This would be done for the following reason; If when they get in there the shunt is working properly and there is no leak but there is fluid build up. This would mean the shunt could not keep up with the amount fluid being drained off and is causing swelling in spinal cord. This is obviously not the quickest option but we only want what is best not the quickest.
We will not have any "say so" in this decision really, so please pray for clarity and discernment for us and the doctors. If you think of any questions we should ask please send them to my face book or email asap. This is hard and tiring for us and our minds are far from clear. So any help would be great. As you can tell we r both still up at 4 am with a very sick, and in pain little girl. We are all exhausted right now. We were told by the asst the surgery would either be tomorrow or Sunday. I will update this as soon as i know. Good night -- I am going to try to sleep.
All our blessings to day 1st to start with... we have such awesome friends and family being so very supportive. Joshua is feeling much better and enjoying so much needed time with his mawmaw and pawpaw at the deer lease this weekend. Kylie is in very good sprits and mood. Josh got to work a full day today. Kylie was blessed with an amazing home bound teacher that with in 1 hour of meeting with teachers, she headed to the hospital with a bag of blessings for Kylie. She got tons of hand made cards from her school mates, teachers, past teachers, and lots of COOL Giddens Goodies!! All the cards had pigs, poems, prayers, and such kind innocent words on it she cried through out reading them. The home bound teacher is going to be such a blessing. Kylie <3's>
Well after much waiting we saw the asst. to the surgeon tonight about 7. She checked Kylie out and we all have notice today her swelling got worse and at the bottom of the swelling she started bruising. Nurse said that's deep tissue bruising. When she leans over the shunt is sticking out more. So here is the plan the best i can explain it. It is not easy to follow so please post questions and i will do my best to answer them. The surgeon will be her in the morning around 10-12 and will make the final decision of what kind of surgery we will be doing .. here are the options
1. Leak repair- go in and if there is a leak, repair it. It could be leaking the site of the shunt in the spinal cord or the tube which drain the fluid in to the abdomen. This is the leaser of the surgeries and the one we are praying for. which would be causing the fluid to be collecting and cause the swelling.
2. Shunt revision - If when they open her up they find the shunt is not working - being that it is a mechanical device there is a chance it may not be working which is causing the swelling due to high pressure.They would replace the shunt with a new one but the same kind. This would be starting over in her healing process. Not the worst option but not the best.
3. Lumbar Drain - This is where they would go in and remove the shunt and put in a external drain. this would drain in to a bag they would gage the amount and pressure of the cerebral spinal fluid. This would stay in for 2-3 weeks and then be removed and replaced with a shunt, that be decided on per what the drain showed in pressure and the amount. for example she has a medium flow value now that keeps her pressure between 8-10% - they would adjust that as per what the drain results would be. Negatives on this would be she would have to stay in the hospital while the drain was in, this would require 2 surgeries, high risk of infection with drain. Positive we would have the perfect pressure value for her. This would be done for the following reason; If when they get in there the shunt is working properly and there is no leak but there is fluid build up. This would mean the shunt could not keep up with the amount fluid being drained off and is causing swelling in spinal cord. This is obviously not the quickest option but we only want what is best not the quickest.
We will not have any "say so" in this decision really, so please pray for clarity and discernment for us and the doctors. If you think of any questions we should ask please send them to my face book or email asap. This is hard and tiring for us and our minds are far from clear. So any help would be great. As you can tell we r both still up at 4 am with a very sick, and in pain little girl. We are all exhausted right now. We were told by the asst the surgery would either be tomorrow or Sunday. I will update this as soon as i know. Good night -- I am going to try to sleep.
Thursday, October 22, 2009
10-22-09
Hi Friends & Family,
It is Thursday, 10/22 and we were readmitted last night to the hospital. Since we came home Sunday, Kylie has not made any head way. On Monday night she was in bad pain, we looked at her back and it literally looked like the shunt was protruding out of her back. You could c and feel the tube and the shunt. Which was not like this Sunday, she just had minimal "surgery swelling" Then Monday in the night the leg tremors came back, not near as bad as they were,but back regardless. So Tue the Dr put her on 24 hr bed rest and tried to c if the swelling would go down. She still was not eating or drinking. So on Wednesday we called back in to the surgeon, after the bed rest and we saw no improvement in the swelling. They asked us to bring her in. When we got there the Dr decided that we need to check the placement of the shunt. With it sticking out like it was there was a possibility the shunt became dislodged or the tube became disengaged. Also, leaking or worsen of the meningitis. Also, she was dehydrated so we needed to do iv fluids. We did some scans when we got here yesterday, over night she still didn't eat really, this morning the Dr came in with the results from the scans and the shunt is still in place!! PRAISE GOD!! He said we may have a possible leak of spinal fluid, out of shunt, or the spinal cord. The only way to know is to watch the swelling and see if it increases or changes. So right now we are still waiting. We took Kylie down to a musical performance and she was up 30 minutes before we got back she was nauseated, dizzy and in a lot of pain. So right now we don't know much.. on the leak there is 2 options, A: the leak will heal on it's own (scar tissue will build up) B: Surgery to do a few stitches to close the leak. We will see soon - we will see the Dr late afternoon or evening then he will make the decision. Thanks for the prayers.. Also please keep our little man in your prayers as he came down with strep throat. I am dying not being able to take care of him.
Humble and Scared,
Josh & Karli Reagan
It is Thursday, 10/22 and we were readmitted last night to the hospital. Since we came home Sunday, Kylie has not made any head way. On Monday night she was in bad pain, we looked at her back and it literally looked like the shunt was protruding out of her back. You could c and feel the tube and the shunt. Which was not like this Sunday, she just had minimal "surgery swelling" Then Monday in the night the leg tremors came back, not near as bad as they were,but back regardless. So Tue the Dr put her on 24 hr bed rest and tried to c if the swelling would go down. She still was not eating or drinking. So on Wednesday we called back in to the surgeon, after the bed rest and we saw no improvement in the swelling. They asked us to bring her in. When we got there the Dr decided that we need to check the placement of the shunt. With it sticking out like it was there was a possibility the shunt became dislodged or the tube became disengaged. Also, leaking or worsen of the meningitis. Also, she was dehydrated so we needed to do iv fluids. We did some scans when we got here yesterday, over night she still didn't eat really, this morning the Dr came in with the results from the scans and the shunt is still in place!! PRAISE GOD!! He said we may have a possible leak of spinal fluid, out of shunt, or the spinal cord. The only way to know is to watch the swelling and see if it increases or changes. So right now we are still waiting. We took Kylie down to a musical performance and she was up 30 minutes before we got back she was nauseated, dizzy and in a lot of pain. So right now we don't know much.. on the leak there is 2 options, A: the leak will heal on it's own (scar tissue will build up) B: Surgery to do a few stitches to close the leak. We will see soon - we will see the Dr late afternoon or evening then he will make the decision. Thanks for the prayers.. Also please keep our little man in your prayers as he came down with strep throat. I am dying not being able to take care of him.
Humble and Scared,
Josh & Karli Reagan
Tuesday, October 20, 2009
10-20-09
update for today.. we woke up late and barley got Joshua to school - I'm so tired i feel like a walking zombie!! Ha i probably look like one 2!! On to the more important info, Kylie Sue. She sleep well last night!! After she woke up this morning she was ok but in a lot of pain. She took her meds and laid back down, now her legs are having spasm again. I have called the Dr and we r waiting for a return call. Please keep praying for her and this meningitis. I am praying for complete healing. We r working on all the home bound paperwork today, also please pray for that with us. Thanks for keep up with us!! Bless u, and your family <3
Monday, October 19, 2009
Kylie's Shunt Update
hello friends and family,
I am new to this blogging world, but i figured it was a good way to keep everyone up to date in our crazy world.
Quick recap of Kylie's condition... She was struggling in school last year to see the board. Her teacher (We are so thankful for Leander ISD and their amazing teachers, Mrs. Bizzell thank you for being so proactive and trusting your instinct with our baby, you will never understand just how much you mean to us!)let us know immediately and we scheduled an eye exam. The amazing eye Dr. (Jodie West in Leander) was proactive and saw Kylie had some swelling of the optic nerve, called Papilledema. She sent us to Dr. Martinez at Austin Retina. They found that over the 2 days we waiting to see him her Papilledema had worsen alot! So he explained this comes from pressure in the brain and told us she may have a brain tumor. We were sent to Dell Children's for MRI. Well it was clear, PRAISE GOD! But we had to figure out what was causing it. So they explained a rare condition called Pseudo Tumor Cerebra or intracranial hypertension. This condition is mostly in obese woman of child bearing age, or teens who take Accutane. Kylie doesn't fit ANY criteria for the condition. This was diagnosed by spinal tap. It is where your brain believes you have a tumor but you don't so it stores/produces too much spinal fluid causing high pressure in the brain. She was diagnosed with the condition and been treated with 8 taps and a medication called Diamox for a year now. Over the last 2 months we have seen a steady decrease in her, she feels worse and is servely struggling in school, and lost her sparkle in her eyes. We had a tap on Oct 2 with a very high pressure of 45 (normal is 8-10%) The Dr said after a year of med her taps should not be getting higher, thus means the meds are not working anymore or she is resistant to them. SO we need to take the next step. We meet with the neurosurgeon on Monday the 12th of October and he scheduled surgery the following day! WOW what a crazy, scary week. we are hopeful that this will restore our baby girls sparkle in her eyes! The shunt will drain the fluid off the brain on a constant basis. It will drain the spinal/cerebral fluid in to the abdominal wall. She will continue life as normal with the shunt.
Kylie has a lumbar perinatal shunt put in on Tue the 13th last week. The surgery went well and the Dr felt very comfortable with the outcome. She did well on Tue and wen. Then wen night she stopped eating and became very grumpy. Then she started vomiting all night. On Thursday morning the Dr came in and we thought maybe it was anesthesia so we proceed with the day and it only got worse! She just plain refused food and could not stop vomiting, which is ruff with stitches in tummy and in back. Thursday she was sick all day and all night so Friday we took her off any narcotics to see if maybe that was it. Nope! Still sick .... On Friday night the absolute worse thing ever happened. I was gone to get Joshua ready for his show on Saturday, my mom had came to see Kylie. I walked in at 9pm to my mom and Josh sitting at her bedside with her screaming her legs hurt. She was shaking and throwing her legs around. with much med on board and us trying to calm her this lasted well over an hour! She had taking enough med to put an elephant to sleep and she was still uncontrollable. When she did fall asleep her legs where still shaking. the nurse was very concerned and stood at the bedside for hours with us. The surgeon was paged and they called out some high powered steroids, at this point we did know if her spine was leaking or what! The Dr arrived the next morning and said she has Chemical Meningitis. It is where the spinal fluid is swelling and cause the nerves to freak out. this is caused from her body trying to reject the shunt. It causes serve stomach pain, vomiting, and nerve problem (legs). The treatment for it is high, Strong, doses of steroids for approx 2-3 weeks. It is not rare but uncommon the Dr said. So she is out of school for 4-6 weeks now when we thought she could go back today. She has to stay healthy since the steroids will lower her immunity. She would love to see everyone but right now she needs to stay healthy. So please if you would like to see her make sure you and your family are healthy and where clothes here that where not wore to school. The Dr said that's a big thing for Joshua to change as soon as he gets home so he doesn't carry any germs in to her from school. She loves cards and stuff also. I am constantly letting her know when people call, or text to check on her. She wants to send thank you card to all of you but it will take her awhile to get them done, thanks for being patient. Right now she has to lay flat for up to 2 weeks with short times she can be upright due the the change in pressure in her brain. When she went in to surgery her pressure was around 80-100 normal for her should be 8-10% so she is experiencing extreme headaches right now due to the change in pressure. The Dr said it is low pressure headaches (they r worse than high pressure) but her body will eventually get used to her pressure being lower. Who knows how long she has been living with high pressure and her body will have to adjust to the low now. The shunt will keep her between 8-10%. I'm thankful to all friends and family that have helped, offered, and most of all prayed for us. You can send anything to her at 202 Doefield Dr Cedar Park TX 78613. I will keep this updates so please check in and see the progress we know she will be making!!
Thanks for caring about our baby,
Josh & Karli Reagan
"be still and KNOW that i am God!!"
I am new to this blogging world, but i figured it was a good way to keep everyone up to date in our crazy world.
Quick recap of Kylie's condition... She was struggling in school last year to see the board. Her teacher (We are so thankful for Leander ISD and their amazing teachers, Mrs. Bizzell thank you for being so proactive and trusting your instinct with our baby, you will never understand just how much you mean to us!)let us know immediately and we scheduled an eye exam. The amazing eye Dr. (Jodie West in Leander) was proactive and saw Kylie had some swelling of the optic nerve, called Papilledema. She sent us to Dr. Martinez at Austin Retina. They found that over the 2 days we waiting to see him her Papilledema had worsen alot! So he explained this comes from pressure in the brain and told us she may have a brain tumor. We were sent to Dell Children's for MRI. Well it was clear, PRAISE GOD! But we had to figure out what was causing it. So they explained a rare condition called Pseudo Tumor Cerebra or intracranial hypertension. This condition is mostly in obese woman of child bearing age, or teens who take Accutane. Kylie doesn't fit ANY criteria for the condition. This was diagnosed by spinal tap. It is where your brain believes you have a tumor but you don't so it stores/produces too much spinal fluid causing high pressure in the brain. She was diagnosed with the condition and been treated with 8 taps and a medication called Diamox for a year now. Over the last 2 months we have seen a steady decrease in her, she feels worse and is servely struggling in school, and lost her sparkle in her eyes. We had a tap on Oct 2 with a very high pressure of 45 (normal is 8-10%) The Dr said after a year of med her taps should not be getting higher, thus means the meds are not working anymore or she is resistant to them. SO we need to take the next step. We meet with the neurosurgeon on Monday the 12th of October and he scheduled surgery the following day! WOW what a crazy, scary week. we are hopeful that this will restore our baby girls sparkle in her eyes! The shunt will drain the fluid off the brain on a constant basis. It will drain the spinal/cerebral fluid in to the abdominal wall. She will continue life as normal with the shunt.
Kylie has a lumbar perinatal shunt put in on Tue the 13th last week. The surgery went well and the Dr felt very comfortable with the outcome. She did well on Tue and wen. Then wen night she stopped eating and became very grumpy. Then she started vomiting all night. On Thursday morning the Dr came in and we thought maybe it was anesthesia so we proceed with the day and it only got worse! She just plain refused food and could not stop vomiting, which is ruff with stitches in tummy and in back. Thursday she was sick all day and all night so Friday we took her off any narcotics to see if maybe that was it. Nope! Still sick .... On Friday night the absolute worse thing ever happened. I was gone to get Joshua ready for his show on Saturday, my mom had came to see Kylie. I walked in at 9pm to my mom and Josh sitting at her bedside with her screaming her legs hurt. She was shaking and throwing her legs around. with much med on board and us trying to calm her this lasted well over an hour! She had taking enough med to put an elephant to sleep and she was still uncontrollable. When she did fall asleep her legs where still shaking. the nurse was very concerned and stood at the bedside for hours with us. The surgeon was paged and they called out some high powered steroids, at this point we did know if her spine was leaking or what! The Dr arrived the next morning and said she has Chemical Meningitis. It is where the spinal fluid is swelling and cause the nerves to freak out. this is caused from her body trying to reject the shunt. It causes serve stomach pain, vomiting, and nerve problem (legs). The treatment for it is high, Strong, doses of steroids for approx 2-3 weeks. It is not rare but uncommon the Dr said. So she is out of school for 4-6 weeks now when we thought she could go back today. She has to stay healthy since the steroids will lower her immunity. She would love to see everyone but right now she needs to stay healthy. So please if you would like to see her make sure you and your family are healthy and where clothes here that where not wore to school. The Dr said that's a big thing for Joshua to change as soon as he gets home so he doesn't carry any germs in to her from school. She loves cards and stuff also. I am constantly letting her know when people call, or text to check on her. She wants to send thank you card to all of you but it will take her awhile to get them done, thanks for being patient. Right now she has to lay flat for up to 2 weeks with short times she can be upright due the the change in pressure in her brain. When she went in to surgery her pressure was around 80-100 normal for her should be 8-10% so she is experiencing extreme headaches right now due to the change in pressure. The Dr said it is low pressure headaches (they r worse than high pressure) but her body will eventually get used to her pressure being lower. Who knows how long she has been living with high pressure and her body will have to adjust to the low now. The shunt will keep her between 8-10%. I'm thankful to all friends and family that have helped, offered, and most of all prayed for us. You can send anything to her at 202 Doefield Dr Cedar Park TX 78613. I will keep this updates so please check in and see the progress we know she will be making!!
Thanks for caring about our baby,
Josh & Karli Reagan
"be still and KNOW that i am God!!"
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