Energy - I sure wish I had the energy to blog more often, but these days . . . these days, it's been hard to even lift a finger without wearing myself out. You may have felt it in the words of my FB posts, messages, texts, emails and I'm sure you've felt it in my recent blog posts.
I have been so weary. Physically weary, to the bone. Then I had this rash pop up that was super painful. It was a nerve-type rash and I went into the doctor to get it checked out. I found out that my levels were all over the place, and my B12 was extremely low as was my thyroid. Both of these things (EACH of these things, really) can cause extreme exhaustion, lack of energy, weight gain, mood changes, nerve trouble, and so much more. I truly am grateful to have a reason behind the way I've been feeling! There is a reason why I've felt more forgetful, sometimes confused even - it all comes back to these levels. There is a plan in place for my treatment and hopefully I will get some energy back soon. I NEED it so that I can be who my family needs me to be.
Henry had all-day testing at OU Children's this week, in the Psychiatry Dept. It was intense for him, and at one point he had to stop for a quick nap (which they gratefully obliged to). I felt like I was testing too, filling out paperwork on Henry for a few hours myself. Mike and I also were able to meet with one of the heads of the department who is leading Henry's studies. It was wonderful to be able to ask questions so freely, to gain wisdom from someone who knows so much, who's seen so much through the years. The doctor was a wealth of information and is leading us to better specialists and therapists here in Oklahoma City. Would you pray that we would be able to get into these doctors and therapists quickly?
The main goal of the testing is that these professionals will come up with a plan for home and for school, among other things. These goals will be based off of the test results and the time they spent talking with and observing Henry. We were just so impressed, and I'm excited to get the results back so we can plans to put into place!
Yesterday I met with Henry's teachers and counselor. We meet quarterly (per their request) so they can stay on top of things and make sure they know everything that's going on with Henry at home, with doctors, with therapists, etc. Isn't that a wonderful thing?! We are just SO grateful for our school and for all of these wonderful people who are there for Henry, cheering him on! He's doing better than ever in school, excelling in every single thing. He's an Accelerated Reader now and he's really developing and maintaining relationships on his own! It's so special and encouraging to watch. Mike and I are just thrilled at the progress being made at school and the way Henry thrives while at school.
Although Henry is thriving in the classroom, he still has a hard time at home. This week alone, I've been hit and spat upon, among other things. Henry takes his anger, his strong and negative feelings, all out on me. I'm his safety net, and as much as I am grateful for that, it WEARS on me. In all honesty, who wants to hear, "I hate you" or "I wish you never had me", "I wish you never met Dad", and on and on and on??? I hear it every single day, and it wears my spirit down and now it's wearing my body down - literally.
One BIG thing we learned from the psychiatrist this week was that sometimes, Henry truly cannot help his outbursts because they ARE neurological misfires and imbalances. The doctor explained it so well, in ways we understood. You don't just assume that your child literally can't control their bad/destructive behavior when they are 7, but when they have trauma or when they have something like PANDAS, that's very much the case. When this happens, you CANNOT discipline it. WHAT?! Nope, you can't discipline the action that is out of their control, just like you can't discipline someone for having tourettes or tics, or even seizures (which was the example the doctor gave us). Henry's outbursts are very much like a seizures - uncontrollable.
After speaking with the psychiatrist and he counselor at school, AND on the same day, receiving information from our own doctor . . . we are now looking into trauma therapy for our entire family. Every single person has been through trauma. We've been through some trauma together as a family and we have an opportunity to work on it together as a family as well. This type of therapy would be wonderful for all of us and would quite possibly be best for Conner. Conner is our silent sufferer - our laid-back Bubba who rolls with the punches, for the most part. His heart hurts, and those hurts come out every once-in-a-while. Just like we help Lucy with HER hurts and just like we help Henry with HIS hurts . . . we need and want to help Conner with his, even if they aren't as loud as those of his brother and sister.
Leaving on Happier Notes . . .
Lucy's seizures have been very controlled this week, after the increase we had last Friday! Although she is having screaming fits (that last for hours on end), she is tolerating her feeds and has successfully gone back to school this week!
Conner, the now 12 year old, is loving like and school and anything social. He especially loves going up to the park after school with his friends everyday after school. He's still a little boy, and I'm enjoying every last moment of that. He is starting to like girls, sit by girls, go out of his way to talk to girls, but he still holds my hand and wants me to snuggle him. He is a treasure to my heart.
Henry is excelling in soccer and is thriving with the relationships being made there. The energy he spends there helps him in the classroom and at home. The confidence he gains there is priceless and it has changed him for the better!
Mike continues to work ever-so-hard for our family and we are still amazingly grateful for his company and the graciousness they've shown us through our recent journeys. I don't know how Mike works so hard during the day, then comes home to clean, fold laundry and work the night shift with Lucy. He amazes me each and every day. I'm beyond grateful for this man.
By the Way . . . I can HARDLY imagine that it's ALMOST TIME for Ellie Kate's MONTH OF RECKLESS LOVE! Starting the first of November, I will have more instructions and an Amazon Wish List for the books and sensory toys we hope to donate to OU Children's Hospital in honor of Miss Ellie Kate again this December 4th, which would be Ellie's 10th birthday. PLEASE, please, please be watching for ways to take part and get involved and we plan to honor our Daughter and recklessly love those children at OU Children's Hospital!
Thanks for your prayers, My Friends. Thank you for your continued encouragement. I run to the mailbox each day in hopes of another encouraging card because they lift my spirits so much. I'm telling you, God uses YOU to life our hearts in so many ways.
Here's to more energy and more blog posts!
Ryan
Friday, October 30, 2015
Saturday, October 24, 2015
Clear Tunnel
Life has truly felt like a tunnel the last few days. I take that back - it feels like that tube at Chuck-E-Cheese - the one you go into when it's your birthday. You walk in and the door is closed and the wind is turned on. It's a clear tunnel so everyone around you can see you looking crazy, wild and silly - your friends AND strangers! Your hair goes everywhere. They make you wear these goggles which make it hard to see. You don't know where to look. You are supposed to be grabbing that "money", but it's all swirling around you so fast that it's hard to even focus. Yep, that's EXACTLY how it's been . . .
We've been trying to settle back into routine, and the boys really seem to be thriving off of it. Heck, I AM thriving off it! I love having routine and meal times together, and we've been able to do that since we've been home from the hospital. I have to say - we've been eating amazingly well because of the graciousness of precious friends! All three of my boys will be spoiled rotten once we get through that last frozen meal that was lovingly prepared for us (I'm afraid I let them down in the cooking department).
Henry had one night this week that was really hard we finally attributed it to a loose tooth (what is it with Henry and all of his tooth issues/pain?!). Thankfully, I pulled that tooth on out and he was acting and feeling better. He is excelling in school, you guys! He's even reading A.R. books now and received an award at school on Friday!
Oh, Friday! Lucy looked like she was sleeping during the entire assembly, which seemed odd to me, seeing how loud it was. After checking, it was clear that she was in seizure - the new type of seizure she's been having where she looks like she is sleeping with some slight twitches in her hands and feet. I rushed her back to the school office where they quickly got us into an office for privacy (the school handled it so well). Both Grandmothers were there, so they calmly followed my instructions. We called 911 and had Lucy taken to OU. She was out the entire ambulance ride.
They of course took us straight to a room, and it turned out that our favorite neurologist (Lucy and Henry's current neurologist) just "happened" to be in the ER room next to us. This never happens, ya'll - it was absolutely from the Lord. The doctor immediately came in and was able to evaluate Lucy and order tests right then and there. It was comforting to have our OWN neurologist laying eyes on Lu Lu as she was in this unresponsive episode.
They did bloodwork, an EEG and a CT scan. All that can be explained is that NKH is an ugly disorder that affects your brain, and how it misfires today may not be how it misfires tomorrow. These episodes are absolutely neurologic and could be NKH progressing in Lucy's body. This all could be happening too because she is still healing from ecoli that was in her port and her blood stream. Mike and I really feel that it is a combination of both things.
Unfortunately, with seizures and genetic disorders and things that can progress, there's just not a whole lot you can do. Your choices are limited. But, we are doing the best thing for Lucy right now, which is having her seen again this week by a few doctors and by increasing some of her anti-seizure medications.
Conner played a fantastic soccer game on this fall Saturday, and Lucy laughed and giggled throughout the day, which was a real treat. Henry had a good day too, but he seems to be manic again tonight for some reason and we are praying that he will somehow fall asleep (and SOON!).
Back to that tube/tunnel . . .
I know that, in our case, the tunnel is clear because we invite others in to share our journey. We want to be open and honest, REAL about the ups and the downs that come with losing a child and with raising a child(ren) with special-needs. We share freely and openly because the Lord has called us to, although I assure you, there are many things we keep to ourselves and to our family as well.
Living in a clear tunnel isn't for everyone, and I completely get that. I also know that it may sound silly when I complain about it when I'm blogging here for all to see! Thank you for your grace as I find the balance of sharing my heart in journal form, passing on our story so that others know they aren't alone, and somehow meeting my deep desire to see the Lord glorified in our roller-coaster journey.
We've been trying to settle back into routine, and the boys really seem to be thriving off of it. Heck, I AM thriving off it! I love having routine and meal times together, and we've been able to do that since we've been home from the hospital. I have to say - we've been eating amazingly well because of the graciousness of precious friends! All three of my boys will be spoiled rotten once we get through that last frozen meal that was lovingly prepared for us (I'm afraid I let them down in the cooking department).
Lu Lu enjoyed a shopping with Mommy and Nunnie on Thursday!
Cheering Henry on at the Assembly
Henry had one night this week that was really hard we finally attributed it to a loose tooth (what is it with Henry and all of his tooth issues/pain?!). Thankfully, I pulled that tooth on out and he was acting and feeling better. He is excelling in school, you guys! He's even reading A.R. books now and received an award at school on Friday!
Henry's Assembly
Oh, Friday! Lucy looked like she was sleeping during the entire assembly, which seemed odd to me, seeing how loud it was. After checking, it was clear that she was in seizure - the new type of seizure she's been having where she looks like she is sleeping with some slight twitches in her hands and feet. I rushed her back to the school office where they quickly got us into an office for privacy (the school handled it so well). Both Grandmothers were there, so they calmly followed my instructions. We called 911 and had Lucy taken to OU. She was out the entire ambulance ride.
Still "out" during the EEG
Always a Daddy's Girl
They of course took us straight to a room, and it turned out that our favorite neurologist (Lucy and Henry's current neurologist) just "happened" to be in the ER room next to us. This never happens, ya'll - it was absolutely from the Lord. The doctor immediately came in and was able to evaluate Lucy and order tests right then and there. It was comforting to have our OWN neurologist laying eyes on Lu Lu as she was in this unresponsive episode.
They did bloodwork, an EEG and a CT scan. All that can be explained is that NKH is an ugly disorder that affects your brain, and how it misfires today may not be how it misfires tomorrow. These episodes are absolutely neurologic and could be NKH progressing in Lucy's body. This all could be happening too because she is still healing from ecoli that was in her port and her blood stream. Mike and I really feel that it is a combination of both things.
Unfortunately, with seizures and genetic disorders and things that can progress, there's just not a whole lot you can do. Your choices are limited. But, we are doing the best thing for Lucy right now, which is having her seen again this week by a few doctors and by increasing some of her anti-seizure medications.
Conner played a fantastic soccer game on this fall Saturday, and Lucy laughed and giggled throughout the day, which was a real treat. Henry had a good day too, but he seems to be manic again tonight for some reason and we are praying that he will somehow fall asleep (and SOON!).
Back to that tube/tunnel . . .
I know that, in our case, the tunnel is clear because we invite others in to share our journey. We want to be open and honest, REAL about the ups and the downs that come with losing a child and with raising a child(ren) with special-needs. We share freely and openly because the Lord has called us to, although I assure you, there are many things we keep to ourselves and to our family as well.
Living in a clear tunnel isn't for everyone, and I completely get that. I also know that it may sound silly when I complain about it when I'm blogging here for all to see! Thank you for your grace as I find the balance of sharing my heart in journal form, passing on our story so that others know they aren't alone, and somehow meeting my deep desire to see the Lord glorified in our roller-coaster journey.
Scripture, along with encouragement from others, has really helped me over these tough weeks. I will leave you with a verse that a Dear Friend recently reminded me of, and I think it's the perfect verse if you are like me and feel like you are in that tube/tunnel:
Isaiah 46:4
"I am He who will strengthen you; I will sustain you and I will rescue you".
Tuesday, October 13, 2015
Can It Be?
We are HOME. HOME! It's hard to believe that, after about two weeks of intense medical treatment, Lucy is now resting in her own bed (and she's loving it, by the way). I'm still trying to wrap my mind around the events that have taken place but the main thing is, Lucy's infection is so much better and we are all now enjoying the comforts of home. I can say that we certainly do not take those comforts for granted.
Lucy's having a very hard time, even though we are home. She is of course, very stable but she is still on sensory overload. Every movement bothers her, and the loud noises send her over the top, causing her to get hysterical. We are trying to tip-toe around the house, but life has noises and we can't be silent all the time. Hopefully, as time goes on, her little nerves will settle and she will better acclimate to our home environment.
We'd love prayer for Lucy's pain. We think part of Lucy's agitation is from her pain that we can't control. She was on heavy pain meds in the hospital, which she received through her IV port. Getting pain meds through her belly isn't the same as getting them through the IV because they don't work as quickly. Lucy has screamed on and off the entire time she's been home, and it's breaking our hearts.
Also, Lucy is still having diarrhea and has vomited since being home. Her little body is so tired and she can't stay awake for long periods of time. I can tell she's happy to be home, but she can't stay awake long enough to really enjoy it! She isn't lethargic and obviously isn't at the point where we feel she needs to go back to the hospital. We just want the Lord to keep her from getting to that point. We want to stay at home.
Whew. We are tired. We are weary. We are grateful for YOU and for your love for us. Thank you so much and thank you too for your patience with us as we try to re-enter life together.
With Hope,
Ryan
Lucy's having a very hard time, even though we are home. She is of course, very stable but she is still on sensory overload. Every movement bothers her, and the loud noises send her over the top, causing her to get hysterical. We are trying to tip-toe around the house, but life has noises and we can't be silent all the time. Hopefully, as time goes on, her little nerves will settle and she will better acclimate to our home environment.
We'd love prayer for Lucy's pain. We think part of Lucy's agitation is from her pain that we can't control. She was on heavy pain meds in the hospital, which she received through her IV port. Getting pain meds through her belly isn't the same as getting them through the IV because they don't work as quickly. Lucy has screamed on and off the entire time she's been home, and it's breaking our hearts.
Also, Lucy is still having diarrhea and has vomited since being home. Her little body is so tired and she can't stay awake for long periods of time. I can tell she's happy to be home, but she can't stay awake long enough to really enjoy it! She isn't lethargic and obviously isn't at the point where we feel she needs to go back to the hospital. We just want the Lord to keep her from getting to that point. We want to stay at home.
Whew. We are tired. We are weary. We are grateful for YOU and for your love for us. Thank you so much and thank you too for your patience with us as we try to re-enter life together.
With Hope,
Ryan
Monday, October 12, 2015
Hope
I'm sitting by a sleeping Lucy, all cuddled up in her tumbleform seat here in the hospital room - the seat which keeps her secure and safe from pulling her tubes and wires. She adores this seat and feels nice and snug - tight even - and she likes it that way. Sensory issues mess with your body and mind, so those suffering with them like to have pressure so that they feel enclosed. It brings security and makes them feel like their world isn't so out-of-control. That's why she loves the weighted blanket too, which has been a life-saver here in the hospital since Lucy has been on senor overload! This precious blanket belonged to my Dear Friend's daughter, Kelsey. Kelsey met Jesus last year and her mommy gave this great blanket to Lu Lu. Little did we know how important this blanket would become! It is quite the treasure and allows Lucy to rest and sleep peacefully, just as she is now.
Lucy is doing incredibly well, and although she still has pain and is trying to get caught back up with her feeding schedule, we couldn't be happier with how things have gone. Ecoli can be incredibly dangerous, deadly even. We've heard of another little patient here at OU who has had ecoli, and her kidneys shut down because of it (and she doesn't have an underlying condition like Lucy). She's now on dialysis and needs our prayers. That so easily could have been Lucy, You Guys!! God's mercy is great and we appreciate the many prayers around the world for Lucy's healing. The Father heard our cries, I have no doubt. I am incredibly grateful, and in awe, that Lucy has been spared from so much.
Last Monday was very grim. Most of last week was, really. We were looking at a very long stay, possibly even another month, and now it looks like we will go home this week! It's hard to even wrap my mind around - only a 2 week stay for this illness. God has moved so quickly throughout Lucy's body; it's responded so well to treatment. It was absolutely His timing to have us here, in the hospital room, when her fever started so that cultures could be taken and antibiotics could be administered from the very beginning. If we were at home and had tried to care for the fever there for even a little while, I don't know what the outcome would have been. I don't have to even think about that now, though because my Little Girl will soon be coming home to her own bed, her own room, her own house.
Would you continue to pray that Lucy will catch up with her feedings and that she will have ease of pain? We want to be able to control it at home. Also, she will be on IV antibiotics at home for a while, so I will be learning how to administer those. I would love prayer as I learn new nursing skills, especially since I am not a nurse:). We also will be able to give Lucy IV fluids (through her port) at home, which is another huge blessing. They are working hard to set those things up even now - I can hardly believe it!
This is Conner's birthday week, Ya'll! He will be 12 on Friday!! Please pray that he feels special this week. He is so often looked over because he is just such an easy-going, good, well-mannered guy. He is easy to parent, to be honest. Nevertheless, I know he too longs for attention and we want to give it to him, especially this week! He has a big party on Saturday, so we covet your prayers that nothing interferes with that.
Henry too is having a hard time and just needs us home. He had his feelings deeply hurt by some neighborhood kids last night, and hot tears were streaming down his face. He couldn't put his feelings into words for me. He couldn't explain to me what happened, but I know he is hurting and he is having a hard time relating to other kids. Would you pray for his heart and mind to settle?
Getting back into life at home is always hard as we aren't used to all being together and we aren't used to the old routine of life. It's a gradual thing, learning to be together again as a family, and we need extra grace and patience, especially since we will be in charge of Lucy's care at home (and it will entail more than the usual). Would you pray for a smooth transition?
Oh, I am just so excited to hopefully be home this week, barring no unforeseen issues with Miss Lucy! Thank you for your continued prayer and encouragement. We've been low this go-around and have held onto every word, ever text, ever note, every message that you have sent. Thank you in advance, for having grace for us as we slowly re-enter life outside the hospital (hopefully this week!).
With Hope,
Ryan
Lucy is doing incredibly well, and although she still has pain and is trying to get caught back up with her feeding schedule, we couldn't be happier with how things have gone. Ecoli can be incredibly dangerous, deadly even. We've heard of another little patient here at OU who has had ecoli, and her kidneys shut down because of it (and she doesn't have an underlying condition like Lucy). She's now on dialysis and needs our prayers. That so easily could have been Lucy, You Guys!! God's mercy is great and we appreciate the many prayers around the world for Lucy's healing. The Father heard our cries, I have no doubt. I am incredibly grateful, and in awe, that Lucy has been spared from so much.
Last Monday was very grim. Most of last week was, really. We were looking at a very long stay, possibly even another month, and now it looks like we will go home this week! It's hard to even wrap my mind around - only a 2 week stay for this illness. God has moved so quickly throughout Lucy's body; it's responded so well to treatment. It was absolutely His timing to have us here, in the hospital room, when her fever started so that cultures could be taken and antibiotics could be administered from the very beginning. If we were at home and had tried to care for the fever there for even a little while, I don't know what the outcome would have been. I don't have to even think about that now, though because my Little Girl will soon be coming home to her own bed, her own room, her own house.
Would you continue to pray that Lucy will catch up with her feedings and that she will have ease of pain? We want to be able to control it at home. Also, she will be on IV antibiotics at home for a while, so I will be learning how to administer those. I would love prayer as I learn new nursing skills, especially since I am not a nurse:). We also will be able to give Lucy IV fluids (through her port) at home, which is another huge blessing. They are working hard to set those things up even now - I can hardly believe it!
This is Conner's birthday week, Ya'll! He will be 12 on Friday!! Please pray that he feels special this week. He is so often looked over because he is just such an easy-going, good, well-mannered guy. He is easy to parent, to be honest. Nevertheless, I know he too longs for attention and we want to give it to him, especially this week! He has a big party on Saturday, so we covet your prayers that nothing interferes with that.
Henry too is having a hard time and just needs us home. He had his feelings deeply hurt by some neighborhood kids last night, and hot tears were streaming down his face. He couldn't put his feelings into words for me. He couldn't explain to me what happened, but I know he is hurting and he is having a hard time relating to other kids. Would you pray for his heart and mind to settle?
Getting back into life at home is always hard as we aren't used to all being together and we aren't used to the old routine of life. It's a gradual thing, learning to be together again as a family, and we need extra grace and patience, especially since we will be in charge of Lucy's care at home (and it will entail more than the usual). Would you pray for a smooth transition?
Oh, I am just so excited to hopefully be home this week, barring no unforeseen issues with Miss Lucy! Thank you for your continued prayer and encouragement. We've been low this go-around and have held onto every word, ever text, ever note, every message that you have sent. Thank you in advance, for having grace for us as we slowly re-enter life outside the hospital (hopefully this week!).
With Hope,
Ryan
Thursday, October 8, 2015
Test Results
The lumbar puncture was done first thing this morning. We headed over to the PICU and Lucy easily went off to sleep. Mike and I sat in the waiting room for a few minutes. Two families with children on ventilators, both with bad prognoses. Lots of tears and questions. Confusion in their faces and in their words. One of the chaplains was there to help and comfort. It broke our hearts, and as I left the room, I SO wanted to hug each person, just telling them that we've been there and that we are so sorry they are going through this. But it wasn't my place and it wasn't the time. I'm trusting God to minister to those hearts and for His presence to be thick around them. I'm praying that they will come to know Jesus as Savior as they face these literal life and death days and hard decisions. I cannot imagine trying to go through it without the security of knowing that I will be reunited with my Loved Ones in Heaven one day. Situations like this put it all into perspective; it can ALWAYS be worse and truly, life is a fleeting gift to cherish.
The LP went incredibly well and there were no complications whatsoever! The best news is that the fluid was clear AND it showed NO SIGNS of meningitis!! We all thought Lucy's body was showing us that it was not only fighting ecoli, but also meningitis, although we haven't made that public until now. We've been treating Lucy as if she had it, just in case. Knowing for sure if Lucy had it would determine many things, so today, we were all really shocked to find out that she does not have it and HAS NOT had it! Praise the Lord!
Lucy rested so well this afternoon, and we so appreciate your specific prayers for that. The medications used to put her under for the LP helped her rest, and she desperately needed it. Everyone has been quiet today, knowing that Lucy's been overstimulated. Our nurse has done a great job in keeping things peaceful and quiet and only having necessary folks enter. I am so grateful.
This evening, Lucy's back to screaming and hurting, with those big crocodile tears. We've given morphine and hopefully that will settle her brain and body down for at least a little while (even though it hasn't done much to help the last few days). Would you pray for peace over Lucy?
There are still some big questions and the answers will determine how long the rest of our stay will be. We need to find out what type of ecoli is growing inside of Lucy. The main things is, we need to see where the infection is coming from. What's the source? Knowing that will help us put a plan a place.
We will start TPN tonight, which is nutrition that will be given through Lucy's port. This will keep her body going and give it what it needs as she fights the infection. TPN can be damaging to organs, so we hope that Lucy doesn't have to be on it for very long. We are praying that SOON, her body will settle down enough for us to start her feeds back up again. Would you join us in praying for that?
The LP went incredibly well and there were no complications whatsoever! The best news is that the fluid was clear AND it showed NO SIGNS of meningitis!! We all thought Lucy's body was showing us that it was not only fighting ecoli, but also meningitis, although we haven't made that public until now. We've been treating Lucy as if she had it, just in case. Knowing for sure if Lucy had it would determine many things, so today, we were all really shocked to find out that she does not have it and HAS NOT had it! Praise the Lord!
Lucy rested so well this afternoon, and we so appreciate your specific prayers for that. The medications used to put her under for the LP helped her rest, and she desperately needed it. Everyone has been quiet today, knowing that Lucy's been overstimulated. Our nurse has done a great job in keeping things peaceful and quiet and only having necessary folks enter. I am so grateful.
This evening, Lucy's back to screaming and hurting, with those big crocodile tears. We've given morphine and hopefully that will settle her brain and body down for at least a little while (even though it hasn't done much to help the last few days). Would you pray for peace over Lucy?
There are still some big questions and the answers will determine how long the rest of our stay will be. We need to find out what type of ecoli is growing inside of Lucy. The main things is, we need to see where the infection is coming from. What's the source? Knowing that will help us put a plan a place.
We will start TPN tonight, which is nutrition that will be given through Lucy's port. This will keep her body going and give it what it needs as she fights the infection. TPN can be damaging to organs, so we hope that Lucy doesn't have to be on it for very long. We are praying that SOON, her body will settle down enough for us to start her feeds back up again. Would you join us in praying for that?
I'm thankful for a restful day and thankful too for continued prayers and encouragement. I cannot tell you how much that spurs us on, Friends. I specifically want to thank those precious people who have been doing our laundry and who have signed up to bring us meals! And folks at Mike's work . . . oh my goodness, they have stocked us up too! We are just blown-away by your generosity. It's been a long time since we've been in this type of tough position, but being here reminds us all how important the Body of Christ truly is. Thank you for being His hands and feet!
Wednesday, October 7, 2015
Pain and Agitation
It's been an extremely hard day for Our Girl. Lucy's been in pain with heavy, hot tears flowing from those blue-green eyes. It just breaks your heart.
Since Lucy can't tell us what's going on, we can only guess what she is feeling. We think she is extremely over-stimulated, and who wouldn't be during a hospital stay? Because of all that is going on in her little body, we have doctors, nurses, techs, specialists, housekeeping, etc. in and out of the room literally all day long. These things need to happen and obviously these folks need to be in the room; it's just that every time that door opens, the toilet flushes, or even when someone sneezes or coughs, Lucy becomes extremely agitated and begins to scream.
We've tried different types of pain meds and agitation medications, and NONE of it seems to be working. Lucy will sometimes settle down for about 10-20 minutes, get startled and start screaming hysterically. These episodes have come on and off since early last week, but as of today, they are almost completely non-stop. It's incredibly tiring for Lucy Belle, as you can imagine, and it's exhausting for us as her caregivers as well. When tears are flowing from your baby's face, when they are screaming and you have no doubt that they are hurting; when you are doing everything possible to stop that pain, and yet nothing anyone does stops it all . . . your heart breaks over and over again. It is tiring physically, emotionally, spiritually, and mentally. I can only imagine how worn Lucy must be!
A few tests were done today, one extensive, and I'm so grateful that Jayme McLaughlin (Mike's mom) was there to help. We were transported over to Presbyterian hospital for some vascular tests, and our Poor Girl hated every moment of it. I personally believe that each time Lucy is held down, she thinks she is going to be poked for a blood-draw. Imagine two hours of that, with Lucy screaming uncontrollably (and that was after all of the pain meds)! Jayme and I got our work-outs in by trying every possible consulation and comfort, in every kind of position. The one good thing - Lucy really enjoyed her ride back to her room in the wheelchair.
Lucy's seizures have continued today, and although they aren't as long in duration, they are still coming in clusters and look different than her typical ones. She's started doing different things, making us think that her head is hurting. She's bobbing her head and violently pulling her hair out. It's so hard to watch, and you can just imagine what she's feeling, being desperate enough to pull out her own hair by the hand-fulls.
These symptoms lead us closer to an additional diagnosis, but we won't know for sure until after tomorrow. In the morning, Lucy Belle will have a small but intensive test called a lumbar puncture. We will head to the PICU to have Lucy sedated so that they can get a good sample of her spinal fluid. Doctors perform these tests all the time (Ellie Kate had this done several times as an infant), but we are all just a little nervous since Lucy has to be sedated. That's a risky thing on a good day. Please pray for things to go smoothly and for Lucy to be able to go under and wake up easily and quickly, without complications.
Still so many unanswered questions, but Mike and I are okay with that, as we know it is all a process - eliminating things, watching bacteria grow, etc. We do still know that Lucy has ecoli in her blood system and in her port. We hope to find out where the infection is coming from and find out whether or not we need to add the other diagnosis.
Your texts, gifts and messages have so encouraged our heavy, tired hearts. Thank you for your reckless love, Sweet Friends. We couldn't do this without you!
Since Lucy can't tell us what's going on, we can only guess what she is feeling. We think she is extremely over-stimulated, and who wouldn't be during a hospital stay? Because of all that is going on in her little body, we have doctors, nurses, techs, specialists, housekeeping, etc. in and out of the room literally all day long. These things need to happen and obviously these folks need to be in the room; it's just that every time that door opens, the toilet flushes, or even when someone sneezes or coughs, Lucy becomes extremely agitated and begins to scream.
We've tried different types of pain meds and agitation medications, and NONE of it seems to be working. Lucy will sometimes settle down for about 10-20 minutes, get startled and start screaming hysterically. These episodes have come on and off since early last week, but as of today, they are almost completely non-stop. It's incredibly tiring for Lucy Belle, as you can imagine, and it's exhausting for us as her caregivers as well. When tears are flowing from your baby's face, when they are screaming and you have no doubt that they are hurting; when you are doing everything possible to stop that pain, and yet nothing anyone does stops it all . . . your heart breaks over and over again. It is tiring physically, emotionally, spiritually, and mentally. I can only imagine how worn Lucy must be!
A few tests were done today, one extensive, and I'm so grateful that Jayme McLaughlin (Mike's mom) was there to help. We were transported over to Presbyterian hospital for some vascular tests, and our Poor Girl hated every moment of it. I personally believe that each time Lucy is held down, she thinks she is going to be poked for a blood-draw. Imagine two hours of that, with Lucy screaming uncontrollably (and that was after all of the pain meds)! Jayme and I got our work-outs in by trying every possible consulation and comfort, in every kind of position. The one good thing - Lucy really enjoyed her ride back to her room in the wheelchair.
Lucy's seizures have continued today, and although they aren't as long in duration, they are still coming in clusters and look different than her typical ones. She's started doing different things, making us think that her head is hurting. She's bobbing her head and violently pulling her hair out. It's so hard to watch, and you can just imagine what she's feeling, being desperate enough to pull out her own hair by the hand-fulls.
These symptoms lead us closer to an additional diagnosis, but we won't know for sure until after tomorrow. In the morning, Lucy Belle will have a small but intensive test called a lumbar puncture. We will head to the PICU to have Lucy sedated so that they can get a good sample of her spinal fluid. Doctors perform these tests all the time (Ellie Kate had this done several times as an infant), but we are all just a little nervous since Lucy has to be sedated. That's a risky thing on a good day. Please pray for things to go smoothly and for Lucy to be able to go under and wake up easily and quickly, without complications.
Still so many unanswered questions, but Mike and I are okay with that, as we know it is all a process - eliminating things, watching bacteria grow, etc. We do still know that Lucy has ecoli in her blood system and in her port. We hope to find out where the infection is coming from and find out whether or not we need to add the other diagnosis.
Your texts, gifts and messages have so encouraged our heavy, tired hearts. Thank you for your reckless love, Sweet Friends. We couldn't do this without you!
Tuesday, October 6, 2015
A Very Sick Little Girl
Our Lucy Belle - our "Beautiful Light" - is extremely sick. There are many things that we still do not know and there are things that we are keeping to ourselves and to our family at this time. We know you will understand our need for privacy.
Here are some things we DO know:
Because Lucy is so sick, Mike and I don't want to leave her with anyone else for very long. Both sets of Grandparents have graciously come up and relieved us so we could come home and shower, grab a few things, spend time with the boys, etc. My sister has sweetly stepped in, bringing me clothes and sitting with me today which was especially emotional and worrisome. Mike spent last night at home bc he's had some big things at work, and in turn he sent me home to sleep tonight. We haven't slept well, especially the past two nights, with all of the activity that has taken place. We are exhausted and weary. Sometimes I don't even know what's up and what's down, and I certainly have been mixed up on the days of the week both this week and last! That's what happens when you don't see much of the outside world. You poor people who've been trying to communicate with me!
HE IS OUR ANCHOR,
Here are some things we DO know:
- Lucy's port is infected - she has ecoli in her port/central line and in her bloodstream. This means it is running all throughout her little body.
- Lucy is on two strong antibiotics that will cover ecoli as well as meningitis, which is also a major concern at this point.
- Seizures last night were very rough, causing her oxygen levels to go down, as well as her heart rate.
- Lucy was put on oxygen last night bc of the intense seizures and breathing issues
- The seizures we are seeing now are unlike any we've seen before in Lucy
- There have been major changes in Lucy's blood work, which is new to us.
- We've added Infectious Disease who is now involved in Lucy's current care since we are dealing with major infections
- We are still on contact precautions, so visits are discouraged
- We absolutely LOVE our medical team and our Attending, whom we've known for a long time. Trusting and knowing your doctors in situations like this offers so much security, and we are absolutely grateful for God's timing in putting us with this particular team of doctors.
A few things we DON'T know:
- We do not know which type of ecoli is growing in Lucy's body but hope to soon, as we continue blood work
- We do not know the extent of the infection, but it could be quite serious
- We don't know why her blood is doing the things that it is doing
- We don't know how long we will be at OU, but we know this could be an extensive stay (we will have been there one week tomorrow).
- We don't know the plan of action.
There are many things up in the air, and many decisions will be made based on blood results taken today and from those taken overnight tonight. Once we have that information, things should start falling into place. There may be more procedures, some intensive. We just don't know.
Because Lucy is so sick, Mike and I don't want to leave her with anyone else for very long. Both sets of Grandparents have graciously come up and relieved us so we could come home and shower, grab a few things, spend time with the boys, etc. My sister has sweetly stepped in, bringing me clothes and sitting with me today which was especially emotional and worrisome. Mike spent last night at home bc he's had some big things at work, and in turn he sent me home to sleep tonight. We haven't slept well, especially the past two nights, with all of the activity that has taken place. We are exhausted and weary. Sometimes I don't even know what's up and what's down, and I certainly have been mixed up on the days of the week both this week and last! That's what happens when you don't see much of the outside world. You poor people who've been trying to communicate with me!
I have to say, we have been loved on SO well. From brownies being brought up to us, to balloons, snacks, fruit and even grilled salmon brought to our room (Julie and Rick Haller know the way to Mike's heart!) . . . we are blown-away by your kindness and the extent you and your families have gone to love on us. We have NEEDED that love and encouragement. There is no way you can get through times like these without Community, without "your people", without being lifted up by others, even those who love and don't know you well.
Right now I'm snuggling up to Henry Mac with both dogs in bed with us. I have clean sheets and came home to a spotless house, cleaned by precious women. All of my piles and piles of laundry have disappeared - clean and put-away. I cried on the way home, thinking about these people who sacrificed their time, energy and love to come and SERVE our family in these tangible ways. Things like this, these incredible examples of reckless love, breathe life into me when I am weary. They remind me that I am NOT alone. They remind me that we are NOT forgotten by others or by The Father. These acts show me, an insecure woman who worries about constantly bothering and burdening others, that I am worth loving on - not because of anything I have done or haven't done, but because Jesus lives in me! He takes care of us and uses the Body of Christ to do just that!
My heart hurts over Lucy's suffering and pain. We hurt over the unknown and find ourselves a bit confused. However, God's peace has been so thick and He has so evidently orchestrated the right people in the right positions, the right places, the right times . . . PEACE. We don't know what the future holds. It's all so uncertain, but we do so covet your prayers for Our Daughter. She's been so healthy and has excelled and progressed so much, winning our hearts over and over. I feel we still need Lucy with us as she truly is a Bright Light to us, as many of you truly know.
Jesus, my heart cries out, even when I don't have the words to express my feelings! I call out to you, casting my cares upon you. You gladly take them; you ASK to take them. My desire is NOT to give authority of Lucy's life over to you, although it is obvious that you already have authority of her life (you created her innermost being and know her better than anyone! You even know exactly what is going on in her body right this minute!). I'm having to CHOOSE to give her to you, because all I want to do is squeeze her in tight for years and years and years to come. You know what's best for Lucy and I pray that you would work that out even know, healing her quickly while she is still on earth. What a treasure she is to me, Father!
This is a hard fight for us all and we thank you in advance for your continued encouragement, support and most of all, for your prayers (especially for Lucy's healing). I will be slow in thanking the people have been helping and serving us, and for that I apologize now. I will also be slow in social-media, email, texts, and calls as my attention is solely on Lucy when I am at the hospital, and I rarely want her out of my arms. Your patience and understanding are so very much appreciated. We will update when we are able.
HE IS OUR ANCHOR,
Ryan
Sunday, October 4, 2015
Still Here - Lucy Lu Lu Update
Lucy has done so well here in the hospital and finally has been able to tolerate a sustainable amount of continuous formula. That, along with pain control, has been our main goal, and we met it! Pain has also been at a minimum, which is an incredible blessing. Thanks to all who prayed specifically for Lucy's pain to be eliminated! Her energy even peaked and our little Sprite was back this afternoon, enjoying having her hair brushed, putting on "lipstick" (chapstick), putting on a new nightgown, etc. It's been SO good to see Our Girl so happy!
The doctors were set to send us home today because of, well everything I listed above. They felt like we could manage her feeds and pain at home since she is so much better. But then, all-of-a-sudden (literally), Lucy had a huge blow-out. It was a sickly one, you guys - where you know something is going on in her little body. BOOM. Everything changed.
Right after her bad diaper, Lucy acted a bit lethargic and she wanted to sleep in the hospital bed, which is very rare (she and EK have always seen them as toys to hit and kick). We noticed Lucy was in a full-body seizure, which hasn't happened in a long time. Then she was shaking and shivering, as she had a high fever. She didn't at that time, but it rose very quickly and once again, we are at a loss as to what it is that's she's fighting.
Is it a virus? Is this part of why her gut wasn't working? Is her port infected? So many possibilities and so many questions. I'm sure I'm driving the nurses and doctors nuts in asking them about all the blood work and when we will get results to show if there indeed is an infection somewhere. Overall, it will take about 24hrs for us to fully know what is going on.
Lucy rarely runs fever, even when she is very sick. Her fever and lethargy combined with the seizures, have us quite worried. Obviously, we are overly worried for our girl bc of our history and bc of the earthly loss of Ellie Kate. Would you pray for all of those bad things to stay away from Lu Lu? Would you also pray that we would have peace and wisdom?
We've been blessed with several visits from our dearest of friends, and we are just so grateful. They've brought us our favorite gifts and have sat with us and calmed our fears, taking our minds off of sickness. Lucy is now on contact precautions though, so visiting isn't encouraged. If you'd like to see us or have something to drop off, you can do so by going to the nurses' station on the 8th floor. They will make sure we get all messages.
Many people have offered to help with specific things like laundry, cleaning, etc. This is incredibly humbling. With so many sweet ones wanting to help, I've made a list of things/needs on my FB page. You can find it there, if you'd like and if not, that is TOTALLY FINE.
Other ways to pray:
*Conner and Henry - pray for peace and a sense of security as we are away
*Mike - pray for Mike as he continues to go to work and balance hospital life
*Pray for me IC which is in a terrible flare, causing some of the worst pain I've had
*Pray for grandparents as they help and assist with the boys and with our home
It's always interesting to see who first jumps in to help or contacts you, wanting to help. As usual, those dear ones that do are also going through tough things, or have in the past, and yet they still give of themselves and recklessly love us in tangible ways. It blows my mind to see certain people do this time and time again. Faithful friends - you've shown us the faithfulness of the Father. THANK YOU for running to us in our time of need, especially since we haven't been in this type of "need" in over a year.
With Hope,
Ryan
Daddy and Lucy in the ER
Feeling Better!
The doctors were set to send us home today because of, well everything I listed above. They felt like we could manage her feeds and pain at home since she is so much better. But then, all-of-a-sudden (literally), Lucy had a huge blow-out. It was a sickly one, you guys - where you know something is going on in her little body. BOOM. Everything changed.
Right after her bad diaper, Lucy acted a bit lethargic and she wanted to sleep in the hospital bed, which is very rare (she and EK have always seen them as toys to hit and kick). We noticed Lucy was in a full-body seizure, which hasn't happened in a long time. Then she was shaking and shivering, as she had a high fever. She didn't at that time, but it rose very quickly and once again, we are at a loss as to what it is that's she's fighting.
Is it a virus? Is this part of why her gut wasn't working? Is her port infected? So many possibilities and so many questions. I'm sure I'm driving the nurses and doctors nuts in asking them about all the blood work and when we will get results to show if there indeed is an infection somewhere. Overall, it will take about 24hrs for us to fully know what is going on.
Lucy rarely runs fever, even when she is very sick. Her fever and lethargy combined with the seizures, have us quite worried. Obviously, we are overly worried for our girl bc of our history and bc of the earthly loss of Ellie Kate. Would you pray for all of those bad things to stay away from Lu Lu? Would you also pray that we would have peace and wisdom?
We've been blessed with several visits from our dearest of friends, and we are just so grateful. They've brought us our favorite gifts and have sat with us and calmed our fears, taking our minds off of sickness. Lucy is now on contact precautions though, so visiting isn't encouraged. If you'd like to see us or have something to drop off, you can do so by going to the nurses' station on the 8th floor. They will make sure we get all messages.
Silly Daddy, Yummy Food
Contact Precautions
Many people have offered to help with specific things like laundry, cleaning, etc. This is incredibly humbling. With so many sweet ones wanting to help, I've made a list of things/needs on my FB page. You can find it there, if you'd like and if not, that is TOTALLY FINE.
Other ways to pray:
*Conner and Henry - pray for peace and a sense of security as we are away
*Mike - pray for Mike as he continues to go to work and balance hospital life
*Pray for me IC which is in a terrible flare, causing some of the worst pain I've had
*Pray for grandparents as they help and assist with the boys and with our home
It's always interesting to see who first jumps in to help or contacts you, wanting to help. As usual, those dear ones that do are also going through tough things, or have in the past, and yet they still give of themselves and recklessly love us in tangible ways. It blows my mind to see certain people do this time and time again. Faithful friends - you've shown us the faithfulness of the Father. THANK YOU for running to us in our time of need, especially since we haven't been in this type of "need" in over a year.
With Hope,
Ryan
Friday, October 2, 2015
Hostipital
When Conner was little, he used to call this place the "Hostipital". He was two years old when we all were thrown into hospital life, and that was over nine years ago. Nine years of survival mode, with a few breaks in between. This has become our life, and our ministry, our family's mission. It's also become the life of our children. For example, Henry wanted his third bday party to be here in the hospital cafeteria, and so we made that happen for him! Conner and Henry find peace here because it is familiar, and because people know them here. They also absolutely LOVE the cafeteria and getting to choose what they have to eat.
PEACE. I'm grateful that the boys feel at peace, at home here. This place very much felt like home for so long, but the longer we are away, the less it feels so familiar, and understandably so. For those who don't know, Ellie Kate spent most of her life here at OU Children's. She had long stays and shorts stays. Ellie Kate absolutely loved it here because everyone here made her feel loved! She wasn't scared to come here, and neither are the boys.
Obviously, we've been here to OU for many, many doctor appointments, bloodwork and tests since Ellie died, and each time is hard, although I must say that is has become more easy. It's easier because we are OUTPATIENT, and I know we are just there to visit. We've tried our best to avoid hospital admission for Lucy since EK passed away, but it has happened a few times. Thankfully, she hasn't been in-patient in over a year! That is a miracle to us, because it never happened that way with Sweet Ellie. The same smells, sounds, art work, vending machines, and even people - they are all so comforting and yet this time, I have been completely overwhelmed, and not in a good way. I'm just fighting the overwhelming feelings and anxiety.
Lucy is in the hospital because she is having trouble with her feeds. She has been screaming each time we try to feed her anything through her gtube, and she isn't able to sustainably eat or drink by mouth. Her screams of pain over her belly are haunting because it's the same way that EK would cry over her tummy. Most of Ellie Kate's stays here were because she couldn't handle her feedings. Either she couldn't keep them down or they hurt her too bad for us to give. So, like EK, Lucy's been receiving fluids through her port (thank you LORD for her port, so that we don't have to worry about an IV!!). Yesterday, Lucy started tolerating pedialyte on a very low rate, through her gtube. That means she gets a little bit of it constantly through her belly. Last night they were able to bump the rate up a bit and she responded really well! We plan to introduce formula today and we will not leave until Lucy is able to tolerate what she needs to survive and thrive.
Lucy's had to have several rounds of pain meds, sometimes heavy meds, because the pain has just been THAT intense. Watching those tears stream from her eyes - almost every movement and motion exactly like those of her Big Sister . . . I cannot even begin to express what that is like. Holding her yesterday, I sleepily glanced down and saw Ellie Kate in my arms. They are THAT identical at times, especially in this setting. It takes my breath away and causes extreme anxiety this stay, which I hate to admit. Having our entire family up with us last evening was precious, special and it needed to happen, and yet it was so surreal. We ALL felt it.
PTSD is REAL for parents like us, I have no doubt (and grandparents too, I believe). Different things can set it off such as the smell of the same soap used in the hospital where you've been, different art work you've seen while there, etc. Sounds and smells can set you off even outside of the hospital, so BEING here physically, for the SAME things that Ellie struggled with her entire life, has been emotionally overwhelming; mentally overwhelming and exhausting, and physically as well. I know that might be hard for you to understand or maybe even hard to believe, but it is the absolute truth. Bottom line: Ellie Kate passed away because her gut shut down and stopped allowing her to be fed, receive nutrition, process foods, etc. There were other things that happened shortly after and alongside of that, but gut-issues were the main cause of her last down-turn which quickly led to her death. Lucy is stable right now, but because of the history . . . well, THAT is why this is so incredibly intense, and I find myself in full-on grief sickness once again.
All of that being said, I've been doing my best to stay on top of it all, but I know that I haven't returned calls, texts, emails, and FB messages. I just haven't been able to do it, Ya'll. Lucy's been screaming so much and up until now, has required complete attention in every way. We are working extremely closely with the doctors, whom we love, as they are allowing us to choose steps and make decisions along the way. I LOVE that they are listening to us as we use the knowledge we have received living this life for so long - thinking of ideas, running through what has worked and hasn't worked for Ellie Kate and for Lucy in the past - those things wear you out too, although I wouldn't have it any other way. I'm grateful that they trust us, and we are blessed to have a great team! I pray that you have grace and understanding and will see that if we do not respond, it isn't because we don't love you or are not grateful for your outreach! WE NEED the outreach and encouragement! I personally thrive off of that in times like these, sort of like a team. When you are down on your back or are struggling, you look to your team mates to step in and step up, verbally and physically encouraging you along the way, as you make it through the mud, muck and quick-sand. THANK YOU for CONTINUING to do that with us and for us! It means more than you could ever know.
Right now, I'm in the waiting room while Henry is back for his sedated MRI. We may or may not receive results from that today, and I'm not letting my mind run to the "What ifs" where that is concerned. I have enough - I'm not meant to carry that as well. God's got it worked out for Henry's good and for God's glory. We hope to also receive the results of his sleep study (done Monday of this week), and again I am choosing to give the results up to the Father as he knows exactly what is going on in Henry's body and brain.
Would you pray for PEACE? We need God's supernatural peace, the peace that HE has promised, to flood us. I mean, I want to feel it SO incredibly thick that fear seems an eternity away! Also, please pray for Lucy's gut to start working again. My fear is that this is the beginning of gut-trouble and hospital stays to pattern the life of EK, and I'm choosing to give that all to the Father right this moment. It's too much to handle or hold on too, especially when He controls it AND wants to take it off my shoulders. Please pray too for PAIN RELIEF for Lu Lu.
Other ways to pray:
PEACE. I'm grateful that the boys feel at peace, at home here. This place very much felt like home for so long, but the longer we are away, the less it feels so familiar, and understandably so. For those who don't know, Ellie Kate spent most of her life here at OU Children's. She had long stays and shorts stays. Ellie Kate absolutely loved it here because everyone here made her feel loved! She wasn't scared to come here, and neither are the boys.
Obviously, we've been here to OU for many, many doctor appointments, bloodwork and tests since Ellie died, and each time is hard, although I must say that is has become more easy. It's easier because we are OUTPATIENT, and I know we are just there to visit. We've tried our best to avoid hospital admission for Lucy since EK passed away, but it has happened a few times. Thankfully, she hasn't been in-patient in over a year! That is a miracle to us, because it never happened that way with Sweet Ellie. The same smells, sounds, art work, vending machines, and even people - they are all so comforting and yet this time, I have been completely overwhelmed, and not in a good way. I'm just fighting the overwhelming feelings and anxiety.
Lucy is in the hospital because she is having trouble with her feeds. She has been screaming each time we try to feed her anything through her gtube, and she isn't able to sustainably eat or drink by mouth. Her screams of pain over her belly are haunting because it's the same way that EK would cry over her tummy. Most of Ellie Kate's stays here were because she couldn't handle her feedings. Either she couldn't keep them down or they hurt her too bad for us to give. So, like EK, Lucy's been receiving fluids through her port (thank you LORD for her port, so that we don't have to worry about an IV!!). Yesterday, Lucy started tolerating pedialyte on a very low rate, through her gtube. That means she gets a little bit of it constantly through her belly. Last night they were able to bump the rate up a bit and she responded really well! We plan to introduce formula today and we will not leave until Lucy is able to tolerate what she needs to survive and thrive.
Lucy's had to have several rounds of pain meds, sometimes heavy meds, because the pain has just been THAT intense. Watching those tears stream from her eyes - almost every movement and motion exactly like those of her Big Sister . . . I cannot even begin to express what that is like. Holding her yesterday, I sleepily glanced down and saw Ellie Kate in my arms. They are THAT identical at times, especially in this setting. It takes my breath away and causes extreme anxiety this stay, which I hate to admit. Having our entire family up with us last evening was precious, special and it needed to happen, and yet it was so surreal. We ALL felt it.
PTSD is REAL for parents like us, I have no doubt (and grandparents too, I believe). Different things can set it off such as the smell of the same soap used in the hospital where you've been, different art work you've seen while there, etc. Sounds and smells can set you off even outside of the hospital, so BEING here physically, for the SAME things that Ellie struggled with her entire life, has been emotionally overwhelming; mentally overwhelming and exhausting, and physically as well. I know that might be hard for you to understand or maybe even hard to believe, but it is the absolute truth. Bottom line: Ellie Kate passed away because her gut shut down and stopped allowing her to be fed, receive nutrition, process foods, etc. There were other things that happened shortly after and alongside of that, but gut-issues were the main cause of her last down-turn which quickly led to her death. Lucy is stable right now, but because of the history . . . well, THAT is why this is so incredibly intense, and I find myself in full-on grief sickness once again.
All of that being said, I've been doing my best to stay on top of it all, but I know that I haven't returned calls, texts, emails, and FB messages. I just haven't been able to do it, Ya'll. Lucy's been screaming so much and up until now, has required complete attention in every way. We are working extremely closely with the doctors, whom we love, as they are allowing us to choose steps and make decisions along the way. I LOVE that they are listening to us as we use the knowledge we have received living this life for so long - thinking of ideas, running through what has worked and hasn't worked for Ellie Kate and for Lucy in the past - those things wear you out too, although I wouldn't have it any other way. I'm grateful that they trust us, and we are blessed to have a great team! I pray that you have grace and understanding and will see that if we do not respond, it isn't because we don't love you or are not grateful for your outreach! WE NEED the outreach and encouragement! I personally thrive off of that in times like these, sort of like a team. When you are down on your back or are struggling, you look to your team mates to step in and step up, verbally and physically encouraging you along the way, as you make it through the mud, muck and quick-sand. THANK YOU for CONTINUING to do that with us and for us! It means more than you could ever know.
Right now, I'm in the waiting room while Henry is back for his sedated MRI. We may or may not receive results from that today, and I'm not letting my mind run to the "What ifs" where that is concerned. I have enough - I'm not meant to carry that as well. God's got it worked out for Henry's good and for God's glory. We hope to also receive the results of his sleep study (done Monday of this week), and again I am choosing to give the results up to the Father as he knows exactly what is going on in Henry's body and brain.
Would you pray for PEACE? We need God's supernatural peace, the peace that HE has promised, to flood us. I mean, I want to feel it SO incredibly thick that fear seems an eternity away! Also, please pray for Lucy's gut to start working again. My fear is that this is the beginning of gut-trouble and hospital stays to pattern the life of EK, and I'm choosing to give that all to the Father right this moment. It's too much to handle or hold on too, especially when He controls it AND wants to take it off my shoulders. Please pray too for PAIN RELIEF for Lu Lu.
Other ways to pray:
- for clear and quick results for Henry's tests and for wisdom for the doctors where he is concerned.
- Pray too for Conner because although he doesn't express it, I know all of these things must weigh heavy on his heart, even if he doesn't realize it.
- For me and Mike - that God would protect our hearts and guide and capture our thoughts; that He would continue to heal us and comfort us even though it seems impossible to do that here:).
- for our parents, as they hurt for us and hurt for our children
- for God's provision
- for Mike as he continues (and desires) to work hard at his job (which he loves), and that God would allow him to concentrate on that when he needs to.
Thank you for being there for us, Friends. Thank you for loving and serving us. Thank you for understanding, for staying alongside, even when we cannot respond or reach-out. I will update as I am able.
From the Hostipital -
Ryan
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