My Mom is awake! The doctors were able to wean my Momma off the ventilator this morning and so far, she's done incredibly well. She is still on oxygen and has her central line, which is providing an avenue for all of the meds and fluids that she needs. I just can't tell you how joyous it was to walk into that ICU room today and see those tubes out of my Mom's mouth!!
Mom is still hurting and still has a long ways to go. There is much healing that needs to take place, and it may take a long time. She's struggling with confusion and also with hallucinations. Some of this is normal and to be expected because she has been through a major trauma. They may be running more tests later this week to check her status in other areas.
For now, we will continue to sit with mom and help her move around in her bed. When she continually asks us where she is and why she is there, we will fill her in. We will help her wipe her mouth when coughing and dry her tears with kleenex. She needs a lot of assistance at this time and we are happy to provide it!
We are incredibly grateful for your steadfast love, encouragement and prayers! God is so good to breath life into my Momma's lungs, just as we asked Him to. He His faithful - when we see Him move and even when we don't. His ways are not our ways, but we can always, always, always trust Him - even when it hurts, even when it doesn't make sense. We know that every trial, every heartache, is working for OUR GOOD and for HIS GLORY, for those who know Jesus as Lord and Savior.
Resting with a Grateful Heart Tonight -
Ryan
Tuesday, January 26, 2016
Sunday, January 24, 2016
VENTILATOR
This post was supposed to be full of updates of Lucy's hospital stay and Henry's PANDAS treatment. There were supposed to be pictures of Mike and his surprise 40th birthday party, which we had last Friday night. All of that isn't as important right now . . . it's not as important as My Momma.
Late yesterday morning, my Dad came home from running errands and realized that my Mom wasn't yet awake, which was strange. He went in to wake her up and she seemed in a really deep sleep. After a little while, when he realized she wasn't responding to him calling her name, Dad went over and started shaking her and trying to wake her. She was limp, although she did mutter a few words. Dad got her to the car and took her to the ER. They couldn't quite get her stable so they transferred her to St. Anthony's in Oklahoma City. Her numbers there weren't staying stable either, so they had to intubate, which means they had to put Mom on the ventilator.
My Mom started going to a new doctor last week, and was really unsure about him and about some of the treatment he prescribed. It looks like she is having a severe allergic reaction to the medication she was prescribed. The doctor's at the hospital have been horrified at the medications this doctor had my Mother on and legal action is being taken.
I think I am in shock, really. It's very hard to see my Momma on the vent. I've seen my Baby Girl on the vent too, so I'm not a stranger to it. The pumps, the monitors, the fluids - we are all used to those things, which I guess is good in situations like this. I think it makes things easier, at least. I was able to sit with her for several hours today, which was comforting. She woke up for a while and could answer "yes" and "no" questions. She wondered why she was there and why she couldn't breath on her own. I'm so thankful I was able to see her awake for a little bit.
The plan is to take Momma off the ventilator tomorrow. As many of you know, the longer one is on the vent, the harder it is to come off. For that reason, we would like to see her come off. We also want to see her body working correctly though and we don't want her to be in pain or agitated in any way.
Ways to Pray:
1. Healing - pray that Mom is completely healed and that there is no damage
2. Rest - pray for rest for Mom and Dad
3. Wisdom - pray for wisdom for the doctors, nurses and for my Dad as he contacts lawyers about the situation.
Also, the Boys know Nunnie is sick and in the hospital, but they don't know any details nor that she isn't breathing on her own. We would like to keep it that way. Thank you for helping us protect their little hearts.
We covet your prayers, love and support.
2 Cor. 12:9, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
Late yesterday morning, my Dad came home from running errands and realized that my Mom wasn't yet awake, which was strange. He went in to wake her up and she seemed in a really deep sleep. After a little while, when he realized she wasn't responding to him calling her name, Dad went over and started shaking her and trying to wake her. She was limp, although she did mutter a few words. Dad got her to the car and took her to the ER. They couldn't quite get her stable so they transferred her to St. Anthony's in Oklahoma City. Her numbers there weren't staying stable either, so they had to intubate, which means they had to put Mom on the ventilator.
My Mom started going to a new doctor last week, and was really unsure about him and about some of the treatment he prescribed. It looks like she is having a severe allergic reaction to the medication she was prescribed. The doctor's at the hospital have been horrified at the medications this doctor had my Mother on and legal action is being taken.
I think I am in shock, really. It's very hard to see my Momma on the vent. I've seen my Baby Girl on the vent too, so I'm not a stranger to it. The pumps, the monitors, the fluids - we are all used to those things, which I guess is good in situations like this. I think it makes things easier, at least. I was able to sit with her for several hours today, which was comforting. She woke up for a while and could answer "yes" and "no" questions. She wondered why she was there and why she couldn't breath on her own. I'm so thankful I was able to see her awake for a little bit.
The plan is to take Momma off the ventilator tomorrow. As many of you know, the longer one is on the vent, the harder it is to come off. For that reason, we would like to see her come off. We also want to see her body working correctly though and we don't want her to be in pain or agitated in any way.
Ways to Pray:
1. Healing - pray that Mom is completely healed and that there is no damage
2. Rest - pray for rest for Mom and Dad
3. Wisdom - pray for wisdom for the doctors, nurses and for my Dad as he contacts lawyers about the situation.
Also, the Boys know Nunnie is sick and in the hospital, but they don't know any details nor that she isn't breathing on her own. We would like to keep it that way. Thank you for helping us protect their little hearts.
We covet your prayers, love and support.
2 Cor. 12:9, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
Wednesday, January 13, 2016
The Day The World Stood Still
We've had many days like this - days where the world seemed to stand still. We've all been there, right? There are times when we are hit with good news or bad news, or just unexpected news of any kind, and all of a sudden the world stops you in your tracks because everything you WERE counting on; everything you WERE planning, just ISN'T anymore. A kink in the road, a change in the plan, a new diagnoses, a positive pregnancy test, a death in the family, a natural disaster . . . we are all hit with it at sometime or another.
Last Friday was a day like that for our family, although it didn't start out that way. It started out as a normal day. Doesn't it always? But by the end of the day, Mike and I were both worried and confused where Henry is concerned - more than we have been in a long time. The MRI from back in October - the one we had been told was "normal" was indeed, NOT normal, and that was the news we were met with on Friday. I don't want to go into details because things are still up in the air, but that's what we DO know - that Henry's MRI isn't normal. They don't think it's a brain tumor. They have an idea of what it is, but will confirm with another MRI soon. That news, along with additional news during our neurology visit, left me speechless . . . crying hot and heavy tears. I had no words and struggled to check out and set up our next appointment. The world was spinning for me, you guys. What just happened? Mike and I were on the same page with that thought, seriously - "what just happened?". We rallied that night and went to our sweet Friend's wedding, which was joyous, gorgeous and was JUST the spiritual uplifting we needed and I'm grateful for the way he allowed the night to end.
My heart and head are still trying to process things. My body is taking a while to catch up and I have found myself exhausted mentally and physically today. Michael is the Superhero, making it to work and even excelling there. I truly don't know how he does it!
Mike's foot is infected again, at the site of the injury. This isn't good at all, seeing that it's in the same spot as his osteomyolitis. We also got the MRI results back and found out that he has all sorts of damage, including a bone spur, two torn ligaments, a partial tear of one tendon, bone bruises, and a ligament that has been split. WHOA. No wonder he has been hurting so badly! Doesn't it sound just terrible?! He's on a new antibiotic to clear up the infection and then will meet with the surgeon who is Dr. Langerman - the same doctor who operation on Conner's broken arm and the same doctor who first operated on my Dear Friend, Jenni Khufal. Mike is in excellent hands.
We thought Lucy's ears were better, as we received an "all clear" last Thursday. However, one of her ear drums has burst and she is once again pulling at them. I'm wondering if they are still somehow infected and that she may need more than "just" the rocephin shots, meaning IV antibiotics. I don't understand why her infections are so strong! Bless her heart. I can only imagine how miserable she must be, especially not being able to tell us what's going on.
I do have ONE FAVOR for you today - especially for those friends who have children with Special Needs of ANY kind. My Dear Friend, Matt Chambers, is working on some exciting BIG things that could possibly be of great benefit to families like ours. He's gathering research now for some lobbyists, so your participation in this survey is VERY much appreciated! It won't take long, I promise. Thank you in advance for doing it!
http://www.resourceable.org
We love and appreciate you, especially during these times when we are so weary.
Ryan
Last Friday was a day like that for our family, although it didn't start out that way. It started out as a normal day. Doesn't it always? But by the end of the day, Mike and I were both worried and confused where Henry is concerned - more than we have been in a long time. The MRI from back in October - the one we had been told was "normal" was indeed, NOT normal, and that was the news we were met with on Friday. I don't want to go into details because things are still up in the air, but that's what we DO know - that Henry's MRI isn't normal. They don't think it's a brain tumor. They have an idea of what it is, but will confirm with another MRI soon. That news, along with additional news during our neurology visit, left me speechless . . . crying hot and heavy tears. I had no words and struggled to check out and set up our next appointment. The world was spinning for me, you guys. What just happened? Mike and I were on the same page with that thought, seriously - "what just happened?". We rallied that night and went to our sweet Friend's wedding, which was joyous, gorgeous and was JUST the spiritual uplifting we needed and I'm grateful for the way he allowed the night to end.
My heart and head are still trying to process things. My body is taking a while to catch up and I have found myself exhausted mentally and physically today. Michael is the Superhero, making it to work and even excelling there. I truly don't know how he does it!
Mike's foot is infected again, at the site of the injury. This isn't good at all, seeing that it's in the same spot as his osteomyolitis. We also got the MRI results back and found out that he has all sorts of damage, including a bone spur, two torn ligaments, a partial tear of one tendon, bone bruises, and a ligament that has been split. WHOA. No wonder he has been hurting so badly! Doesn't it sound just terrible?! He's on a new antibiotic to clear up the infection and then will meet with the surgeon who is Dr. Langerman - the same doctor who operation on Conner's broken arm and the same doctor who first operated on my Dear Friend, Jenni Khufal. Mike is in excellent hands.
We thought Lucy's ears were better, as we received an "all clear" last Thursday. However, one of her ear drums has burst and she is once again pulling at them. I'm wondering if they are still somehow infected and that she may need more than "just" the rocephin shots, meaning IV antibiotics. I don't understand why her infections are so strong! Bless her heart. I can only imagine how miserable she must be, especially not being able to tell us what's going on.
I do have ONE FAVOR for you today - especially for those friends who have children with Special Needs of ANY kind. My Dear Friend, Matt Chambers, is working on some exciting BIG things that could possibly be of great benefit to families like ours. He's gathering research now for some lobbyists, so your participation in this survey is VERY much appreciated! It won't take long, I promise. Thank you in advance for doing it!
http://www.resourceable.org
We love and appreciate you, especially during these times when we are so weary.
Ryan
Wednesday, January 6, 2016
A Whole Lot of Updates
There are just so many updates, ya'll. Updates on Mike, on Lucy, on Conner, on Henry . . . where do I even begin? Let's make it easy with some bullet points . . .
Michael -
Conner -
Lucy -
Henry -
wasn't throwing a tantrum. He told me about Henry's "crocodile tears" and how "he couldn't
catch his breath because he was crying so hard for you, mommy!". Conner didn't want his
brother to get in trouble for this particular outburst. He said that some of his friends heard it
and were making fun of Henry and Conner quickly put an end to that, telling them that, "He
can't help it! It's his disease". It warmed my heart that God is allowing Conner to better
understand what Henry is dealing with. It made me so happy to hear that he had taken up
for his little brother!
Michael -
- Mike had an MRI last Friday and we are waiting on the results which will tell us whether or not he will need surgery for his ankle (which he severely hurt by falling out of the attic on Dec. 22nd).
- He has still been in pain, especially upon waking and at the end of the day, but he is a champ and is pushing through. The ankle is still quite swollen and doesn't yet look like it's old self.
- Mike turns the BIG 4-0 on January 21st and I cannot wait to celebrate this man who loves and serves his family in so many beautiful ways! Seriously, he comes home late from work and gets right to parenting, taking over for me, helping with dinner (or making it for us), etc. He doesn't stop until around 1130, when we finally get kids asleep in their OWN beds (he stays in the boys room until they fall asleep). How many daddies do these things? God is good to give me THE BEST husband for me!
Conner -
- Conner has begun the braces process and had spacers put in last week
- He is super nervous for those bad-boys and his heavy tears remind me that he is still a soft-hearted little boy and not a teenager (or pre-teen, tween or whatever they are calling themselves these days).
- Conner now regularly helps me by feeding Lucy and he can do it all by himself, even checking residuals and cleaning up afterwards. He is a GOOD boy, you guys. I don't ever want him to feel forgotten in the midst of our chaos.
- He didn't get that computer for Christmas but is working hard for it for his birthday in Oct (if you see him, he may ask to do some odd jobs for funds;)).
Lucy -
- Lucy currently has severe infections in both of her sweet, little ears. It all started about a month ago and I'm afraid that the infection just never truly went away. I feel like I've failed Lucy as her momma and waited too long to have her ears checked by the doctor.
- She is now on some good pain meds and is receiving rocephin shots (we had our first round last night, our second round tonight and will end with the last two shots tomorrow evening).
- Even with the pain meds, Lucy was literally up ALL night screaming out in pain. It breaks our hearts and I can only hope that she understands when we tell her that we are helping her and that it will get better soon. Holy Spirit, will you show those things to Lucy's heart so that she knows she will feel better soon and that she will know her mommy and daddy are working hard to help her?
- Lucy is screaming as I write this (11:23pm), so please pray for relief of pain in the name of Jesus. Pray for immediate healing. Pray for peace to surround her body. Pray for stinging and aching to go away. Pray for angels to visibly surround her in her room tonight so that she will feel extra comforted and cared for. Pray for our night nurses too, as they care for Lucy while she is so agitated.
Henry -
- Because of God's goodness, we were able to see a PANDAS specialist this past Monday! It was WONDERFUL to be validated and to hear that all of Henry's symptoms and behaviors ARE INDEED PANDAS symptoms! There aren't any specialists here in OK and many of the doctors don't yet believe in the disorder at all, so it was a huge deal to know that, "without a doubt", Henry's testing, bloodwork and behavior all clearly pointed to the dreaded PANDAS.
- For the very first time, we had a doctor explain PANDAS to us! It was incredibly helpful, seeing that we've been getting most of our information from the real experts - other PANDAS parents, as well as from other places online.
- We set up a plan and have started all-natural supplements. We will also be tapering down Henry's strong meds because, as we have read, they can cause more HARM than good in children with PANDAS. Henry has done well in the actual taking of the new pills, which is a good thing. He understands the new plan, and he now understands PANDAS better.
- Unfortunately, Henry had a very hard time at school today and had to come home. The teachers and staff did the best that they could and my Dad even went up at one point to calm him down and get him back into the classroom. Henry is currently struggling from EXTREME separation anxiety (with me) and from OCD (specifically with him thinking he has a temp or feeling the need to check his temperature). These things are causing him to be a prisoner.
wasn't throwing a tantrum. He told me about Henry's "crocodile tears" and how "he couldn't
catch his breath because he was crying so hard for you, mommy!". Conner didn't want his
brother to get in trouble for this particular outburst. He said that some of his friends heard it
and were making fun of Henry and Conner quickly put an end to that, telling them that, "He
can't help it! It's his disease". It warmed my heart that God is allowing Conner to better
understand what Henry is dealing with. It made me so happy to hear that he had taken up
for his little brother!
Mike and I are still researching, still pushing, still asking questions - I want to know how to
help Henry at school. I want to see him succeed. He is so intelligent, of that we all are sure
of. I just want him to feel safe and secure wherever he is and right now, he doesn't feel those things. He cannot control his thoughts and he cannot control his body either
(he is also having verbal tics). Would you pray that God would give us wisdom as we try to parent and lead all three of our earthly children well?
- We are still learning SO much about PANDAS/PANS and want to share that information with you, just as we have shared with you information on NKH for so many years (leave it to us to teach you the rare stuff - ha!). There are many resources out there, but one of our favorites is the Pandas Network: http://pandasnetwork.org/
- For a simple list of PANDAS symptoms, check out this link: http://pandasnetwork.org/understandingpandaspans/about-pandaspans/symptoms/
- There is also a special site for doctors and medical personnel: https://www.pandasppn.org/
- Lastly, I share with you a link to a movie trailer concerning PANDAS. The movie itself will be released later this month, from what I understand. We invite you to watch, even for a few moments, to really see and to better understand this disease and all that it involves, particularly in the patients and their families: http://www.mykidisnotcrazy.com/
Oh, Jesus! Rescue Our Son! Deliver him from PANDAS! Heal Henry in the name of Jesus, for YOUR glory alone! Show us how to love him well, how to parent him well, Lord. Thank you for entrusting this Precious Treasure to us. We trust you to provide, Father. We trust you with Lucy and her infections and ask that you would touch her, relieving her pain, even as I type. Touch Conner's heart tonight as well, letting him feel the warmth of the love his mommy and daddy have for him, letting him know what a gift he is - showing him that he indeed is an important part of our family, God. You are GOOD, even when we don't see it even when we don't feel it. Thank you for answering our prayers and getting us into a specialist, Lord. Your timing is perfect and we choose to trust you on this journey.
In Your Holy Name I pray all of these things.
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