Hi! It's Melissa again...I just wanted to send out a quick update on Kylie's progress. She had a rough weekend with lots of low pressure headaches and all the NOT so fun things that go along with them. She was in a lot of pain that continued through the weekend with nausea and vomiting. We have learned that the low pressure headaches are worse as far as the pain level than the high pressure headaches.
Today they saw the Neurologist for a follow up appointment. He adjusted the pressure on her shunt so that it would drain less fluid in order to keep her pressure a little higher. It will take from 24-48 hours for it to help her feel relief.
They will leave for Houston tomorrow to see a Neuro Opthomologist (forgive the spelling!) that was recommended by her Austin Doctors. They will repeat her eye exams and test her shunt.
Thank you for continuing to keep Kylie in your prayers.
-melissa callan
Tuesday, February 9, 2010
Thursday, February 4, 2010
WE ARE REJOICING IN HIS MIRACLE!
THIS IS THE BEST NEWS I'VE BEEN BLESSED TO PASS ON IN MY ENTIRE LIFE!
Kylie went in to surgery this morning to have the new shunt put in. The doctors came out just a few minutes ago to report that the shunt Kylie has in place is working perfectly and she DOES NOT need a new shunt. He checked her pressure and it is completely normal.
Kylie has been struggling because God told her if she could endure surgery for the last shunt it would be the right one for her. She just didn't understand why He let her down. The doctor wanted to reassure that God did not let her down, it was man. I just can't put into words how our family feels right now, but shock and overwhelming relief are on the top of the list.
The doctor said Kylie would probably be able to go home tomorrow!
GOD IS GOOD ALL THE TIME!
Thank YOU ALL for continuing to cover her in prayer, and getting her on every prayer list in central texas and all the way to Missouri & Indiana. Our family is humbled and honored to have such good friends.
Very center of the Bible is Psalm 118:8, which reads (NKJV): "It is better to trust in the LORD than to put confidence in man." Psalm 117 is the shortest, Psalm 119 the longest, and 118 is the center. Sometimes God whispers. Sometimes He shouts.
Like Karli said...TODAY HE SHOUTED LOUD!
-melissa callan
Kylie went in to surgery this morning to have the new shunt put in. The doctors came out just a few minutes ago to report that the shunt Kylie has in place is working perfectly and she DOES NOT need a new shunt. He checked her pressure and it is completely normal.
Kylie has been struggling because God told her if she could endure surgery for the last shunt it would be the right one for her. She just didn't understand why He let her down. The doctor wanted to reassure that God did not let her down, it was man. I just can't put into words how our family feels right now, but shock and overwhelming relief are on the top of the list.
The doctor said Kylie would probably be able to go home tomorrow!
GOD IS GOOD ALL THE TIME!
Thank YOU ALL for continuing to cover her in prayer, and getting her on every prayer list in central texas and all the way to Missouri & Indiana. Our family is humbled and honored to have such good friends.
Very center of the Bible is Psalm 118:8, which reads (NKJV): "It is better to trust in the LORD than to put confidence in man." Psalm 117 is the shortest, Psalm 119 the longest, and 118 is the center. Sometimes God whispers. Sometimes He shouts.
Like Karli said...TODAY HE SHOUTED LOUD!
-melissa callan
Wednesday, February 3, 2010
Come join us for dinner with Kylie!
They have determined that Kylie's shunt has NO flow going through it. This is obviously the cause of her changes in pressure and continued decrease in vision. Tomorrow morning at 8:00 am they are going to do the surgery and as you can imagine Kylie is very anxious. She has to have an MRI tonight at 8:00 then will be fasting for surgery.
We have decided to have a get together at the Dell Children's Hospital Cafeteria at 6:30 tonight. If you can please join Kylie for dinner and cake, she would love to see everyone.
Our family is very thankful for all the prayers, notes of encouragement, ecards, and visits everyone has given to Kylie. We are so very blessed.
-melissa callan
We have decided to have a get together at the Dell Children's Hospital Cafeteria at 6:30 tonight. If you can please join Kylie for dinner and cake, she would love to see everyone.
Our family is very thankful for all the prayers, notes of encouragement, ecards, and visits everyone has given to Kylie. We are so very blessed.
-melissa callan
Wednesday 2/3 noon update
Quick update on Kylie..
- This morning we got an answer about the oddity they found in one of the xrays of her spine yesterday. It was a marker they used and was nothing alarming after all.
- Her kidney function has improved slightly.
- Kylie is in having the scans now and we aren't sure how long they will take.
Thank you for your prayers and Kylie LOVES all the cards her friends are sending...KEEP 'EM COMING! :)
-melissa callan
Tuesday, February 2, 2010
2 am update...
Thanks for all who r following and praying along with us. We know your hearts are breaking along with ours but WE WILL PRAISE HIM IN THIS STORM!!!
We did get results from the testing today, the results are her opening pressure was 26-29 normal is 5-15. Her shunt setting is 15 so this was our 1st indication something was wrong with the shunt. She was a trooper and made it through all day of surgery and test, then some more test! The dr came in this evening and said that the nuclear dye they injected into her spine didn't flow through the shunt, meaning something is wrong with the shunt. This test is not complete as she has to do more scans in the morning to see if the dye has moved anymore. From here the surgeon said we will be doing a shunt "revision" This means either replacing the part or tube that is not working. For example a tube may be clogged or something mechanical may need to b replaced, and or a new shunt all together. He also stated there are more and different shunt to consider. Which we will discuss once the data from the test is complete. There was one other alarming thing one the scan that the surgeon or radiologist was not sure what is was so they will look further into in in the scan in the morning. We don't have a time for the scans to start. Today we started around 8 am. We have not told Kylie for sure that she will have to get a new shunt yet. The dr also said we will do the surgery as soon as possible. I know this is not alot of answers but it is all we know at this point. we are sorry we cant answer our phones but it is easier to just get the info out at once.
Here is a list of our prayer request:
-discernment for the scans
-clear answer on problem of they see of concern on the scan
-peace, comfort, understanding for our family and KYLIE!!
-for this shunt to work
-for the pain to be taken away
-Joshua(in general, as once again he is passed around while we are caring for Kylie)
-rest to be fulfilling, weather we get 1, 2, or 3 hours
-Kylie's legs to stop spasming
-her waking up from surgery to be better (not Linda Blair)
-our finances as another surgery might kill us!
-also the chance for us to b positive and Gods witnesses with every word we speak
Walking by Faith,
Josh & Karli Reagan
Also Kylie wants to make a bunch of braclets to donate to the intracranial foundaton to raise money for research. If you have anything laying around we would love to have it to help raise $ to find a cure to fight this condition!! We have some things, but we need lots of help from friends to help us make them!!
one more thing please send the free cards from dell to kylie room 211. They r free and make her soooo happy!! here is the link..
http://www.dellchildrens.net/patient_get_well_cards
We did get results from the testing today, the results are her opening pressure was 26-29 normal is 5-15. Her shunt setting is 15 so this was our 1st indication something was wrong with the shunt. She was a trooper and made it through all day of surgery and test, then some more test! The dr came in this evening and said that the nuclear dye they injected into her spine didn't flow through the shunt, meaning something is wrong with the shunt. This test is not complete as she has to do more scans in the morning to see if the dye has moved anymore. From here the surgeon said we will be doing a shunt "revision" This means either replacing the part or tube that is not working. For example a tube may be clogged or something mechanical may need to b replaced, and or a new shunt all together. He also stated there are more and different shunt to consider. Which we will discuss once the data from the test is complete. There was one other alarming thing one the scan that the surgeon or radiologist was not sure what is was so they will look further into in in the scan in the morning. We don't have a time for the scans to start. Today we started around 8 am. We have not told Kylie for sure that she will have to get a new shunt yet. The dr also said we will do the surgery as soon as possible. I know this is not alot of answers but it is all we know at this point. we are sorry we cant answer our phones but it is easier to just get the info out at once.
Here is a list of our prayer request:
-discernment for the scans
-clear answer on problem of they see of concern on the scan
-peace, comfort, understanding for our family and KYLIE!!
-for this shunt to work
-for the pain to be taken away
-Joshua(in general, as once again he is passed around while we are caring for Kylie)
-rest to be fulfilling, weather we get 1, 2, or 3 hours
-Kylie's legs to stop spasming
-her waking up from surgery to be better (not Linda Blair)
-our finances as another surgery might kill us!
-also the chance for us to b positive and Gods witnesses with every word we speak
Walking by Faith,
Josh & Karli Reagan
Also Kylie wants to make a bunch of braclets to donate to the intracranial foundaton to raise money for research. If you have anything laying around we would love to have it to help raise $ to find a cure to fight this condition!! We have some things, but we need lots of help from friends to help us make them!!
one more thing please send the free cards from dell to kylie room 211. They r free and make her soooo happy!! here is the link..
http://www.dellchildrens.net/patient_get_well_cards
3:00 Tuesday 2/2
Kylie is out of the operating room and back in her room for a while until she has to go back for the remainder of testing. Kylie is very agitated and upset with the world, who can blame her? She doesn't want to go back, yet again who can blame her? She wants to be left alone...not going to repeat it but you know!
They say it is unsafe to put her under again, so she will have to be awake for the rest of the testing. Please pray for her to calm down and let peace surround her. Let her feel the comfort of His arms. When Kylie is finished, or we have any results I'll update again.
-melissa callan
They say it is unsafe to put her under again, so she will have to be awake for the rest of the testing. Please pray for her to calm down and let peace surround her. Let her feel the comfort of His arms. When Kylie is finished, or we have any results I'll update again.
-melissa callan
Kylie is still in surgery...1:00 tuesday 2/2
Karli just spoke with the doctor, he said the spinal tap went well and he is finished with his part of the procedure. Kylie is fast asleep and her vitals are good. There are still no results from the testing.
Kylie will stay in the operating room until the testing is complete which could be several more hours. Please continue to pray for strength, guidance, and wisdom...and to keep Kylie safe during this difficult day.
-melissa callan
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Kylie will stay in the operating room until the testing is complete which could be several more hours. Please continue to pray for strength, guidance, and wisdom...and to keep Kylie safe during this difficult day.
-melissa callan
.
Tuesday morning update 2/2/10
Hi! It's melissa with a quick update and prayer request. This morning at 11:00 they took Kylie back for a spinal tap and to inject dye into her spine for some testing. They will monitor the dye and how the shunt drains it to determine if the shunt is working properly. She will be put "under" during the beginning of the procedure, and then after some time will be awake as the testing will possibly up to 6 hours. Just a side note...if the test takes a long time that means that the shunt is working in some capacity. The doc said that the shunt is NOT working he will know in 15 minutes.
They are doing many tests and we are praying for CLEAR answers. There are numerous risks involved in these procedures today, anesthesia, opening her spine AGAIN, the dye itself, are the big ones. Please pray for the doctors and nurses to guide their hands, and for Kylie to be safe during this difficult day. Karli and Josh are by her side along with other family members.
I will update as soon as we get the call...
They are doing many tests and we are praying for CLEAR answers. There are numerous risks involved in these procedures today, anesthesia, opening her spine AGAIN, the dye itself, are the big ones. Please pray for the doctors and nurses to guide their hands, and for Kylie to be safe during this difficult day. Karli and Josh are by her side along with other family members.
I will update as soon as we get the call...
Monday, February 1, 2010
update on Kylie
Kylie is having a fairly good day. The ICP monitor, that was surgically inserted on Wednesday, has been taken out, due to it being pulled out of place acidentally by a nurse. The neuro surgeon came in about 30 minutes ago and I was really impressed by his honesty and willingness to help Ky get better. He said that they are going to do a test tomorrow to check if the shunt is working properly. They are going to do a spinal tap, inject dye and periodically take x-rays to watch the flow of the spinal fluid. The doctor said this will help give him the information to know what to do next. The doctor also made it clear that they are going to do whatever he ad to to make sure that Kylie's health is safe.
I am amazed at the strength and courage that Kylie has. She has such a good attitude about all this.
Please continue to pray that God will:
-guide the doctors as they do the test tomorrow
- give Josh and Karli the strength and wisdom to make the right decisions.
-keep Kylie's pain under control and levels good.
-Joshua to know that his sister is going to be okay and that he is a very loved boy.
Blessings:
Kristi Felty
Karli asked me to typed as her brain was overloaded!!
I am amazed at the strength and courage that Kylie has. She has such a good attitude about all this.
Please continue to pray that God will:
-guide the doctors as they do the test tomorrow
- give Josh and Karli the strength and wisdom to make the right decisions.
-keep Kylie's pain under control and levels good.
-Joshua to know that his sister is going to be okay and that he is a very loved boy.
Blessings:
Kristi Felty
Karli asked me to typed as her brain was overloaded!!
Monday 2/1/10 update in need of prayer
Good morning friends, it's Melissa...the Reagan family is in need of prayer and support to help them through this most difficult day.
To start off...KYLIE IS OK! I don't want to scare anyone!!!
Last week when doing a routine exam the nurse accidentally tugged too hard on Kylie's IPC lead. This is what was surgically placed just inside her brain to read her inter cranial pressure. All week they were getting "off the wall" readings from the monitor. As of late last week the doctor told Josh and Karli that they were going to need to consult a doc in Houston because he had "NO IDEA" why her pressure was changing so drastically.
Yesterday they met at length with the doctor and discussed a couple of options...
To start off...KYLIE IS OK! I don't want to scare anyone!!!
Last week when doing a routine exam the nurse accidentally tugged too hard on Kylie's IPC lead. This is what was surgically placed just inside her brain to read her inter cranial pressure. All week they were getting "off the wall" readings from the monitor. As of late last week the doctor told Josh and Karli that they were going to need to consult a doc in Houston because he had "NO IDEA" why her pressure was changing so drastically.
Yesterday they met at length with the doctor and discussed a couple of options...
- injecting some dye to see if the shunt was working properly (keep in mind this is her second shunt) IT HAD BETTER BE WORKING! :)
- taking out the IPC and basically inserting a new lead to start over
As you can imagine neither of these were very popular. They really wanted to have the procedure done, stay in the hospital while the monitor collected the data..then COME HOME with some answers about how to manage Kylie's condition and to try and return to some sort of normalcy. It appears that is not going to be an option.
When I heard this news I felt devastated for my sister and Josh but especially KYLIE. She has been such a trooper. She has gone through so much and to tell a child that they just laid in a hospital bed for 6 days and all the while the monitor was not working is not an easy task. So far all the major procedures she has gone through have had to be done twice.
I always try and find the good in every situation and for this one it would have to be that they didn't just send release her and send her to follow up with the specialist in Houston. I'm thankful that they (a nurse that has been a true angel to Kylie EVERY time she's been in the hospital) discovered the monitor was pulled out. Don't get me wrong, I know we have SO MUCH to be thankful for. Every time I go up to the hospital it doesn't take a few minutes to see that very clearly. My prayer is for strength for Ky, and her family and for answers and guidance for the doctors and nurses who are overseeing her care.
As soon as they make a decision today I'll update another post.
****QUICK UPDATE****
Karli called and told us that Kylie's kidney function has been majorly compromised due to the vancomycin (antibiotic that she is allergic to) she is still having to take.
-melissa callan
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