I am writing this post from the computers at the "Children's Harbor" at the Children's Hospital, while waiting for a load of laundry to finish. How nice that they have this area in the hospital for families to utilize--laundry, fitness room play areas, toys and books, computers...all free.
As I walked in the sunshine from the hotel to the hospital with a backpack full of stinky clothes this afternoon, I felt like I was breaking free from confinement. I'm going to make this a quick post so I can enjoy some time to simply stretch my legs and walk the hospital a bit while my clothes get clean and dry.
Lilly is a lot better at this business of lying around and resting than her mama is.
She is doing great. Slept soundly through the night, awakened around 6:30am by her bladder. We decided last night not to wake her to give meds since sleep seemed more important and she hasn't complained of any pain. Her back hurt a little this morning, so we started her right back up on her regular meds. She is getting quite skilled at all sort of activities while lying in bed, and Tom and I are getting skilled at holding books above our heads to read out loud while we lie by her side to read to her. Many of the card games and activity books that never get opened at home are coming in wonderfully handy here!
Having configured a way to log into his e-mail at work, Tom is probably getting more work done here than he would have back in his office. I know it's hard for him to be away from things there, so it's a blessing that he can do this. And it is also SO good to see him reading to and playing with Lilly, something that our weekly schedules don't allow for often at home.
As for me, I am learning to be still...those of you who know me well know I don't do that well. But it is a commandment--be still and know that I am God--and I am having an accelerated lesson in that now. The stack of reading materials I had lugged with me to the hospital--then found myself wondering why I had bothered since I couldn't focus on them mentally at all--I am now able to read and absorb. And just sitting and lying by my Lilly is a *good* thing. She most definitely craves our nearness, so I am doing my best to joyfully give it. Sometimes that is easy, sometimes (like when I selfishly want to go downstairs to get some breakfast or coffee or go run on the treadmill) it is not.
If any of you has some good children's finger plays or fun guessing games we can do while lying down, I welcome suggestions!!
Still standing in amazement at how wonderfully all of this has gone and how well she seems to be healing! Praise Jesus!
Friday, September 24, 2010
Thursday, September 23, 2010
"Hyatt Hospital"
This child is one amazing little girl.
Yesterday, we sat with her in the Pediatric Intensive Care Unit (PICU) as she mostly slept off the drugs from her surgery and we just tried to keep her hydrated and comfortable. Even though she didn't appear as sick as most kids normally do in the PICU, and mostly likely would have been ok in a regular room, Dr. Oakes wanted her in the PICU because of the possibility that, if she should start leaking spinal fluid or start any bleeding in her cord, she could quickly degrade to a very serious state--possibly resulting in paralysis or death. The nursing care ratio and frequency of monitoring was much more suitable for her in the PICU.
The problem with the PICU, however, were the rules about visiting hours. Many of the children in the PICU are unaware of their parents' presence or absence; Lilly, however, was fully aware when we were there and when we were leaving, and our absence was cause for great anxiety to her. Which meant it was also a cause for great anxiety for me (and, I suspect, the nurses). The first time Tom and I had to leave her from 6pm-8pm, which gave us time to go grab some dinner at a cute little Mexican place a few blocks away. I couldn't really taste the food; it was, however, nice to have a sort of "date night" with my man. While we were gone for dinner, Lilly slept, and didn't really miss us except for the first 30 seconds we were gone, we're told. Having slept much of the day, (and with most of the drugs having made their way out of her system), however, by 8pm she was no longer very drowsy. That was nice for us at first, so we could interact with her while we were permitted to be there. The downside was that by 10pm, when it was time for us to go, she still hadn't really settled into a deep sleep and was fully aware that we were leaving her for the night. Her wonderful PICU nurse, hoping to ease her anxiety, let us give her the next dose of painkillers and hang around about 15 minutes longer than we were supposed to. But it was becoming clear Lilly was not going to doze off anytime soon, and she finally said "I'm so sorry, guys, but it's time..." So, with Lilly clinging to me and crying, I had to pry her fingers off and blow her kisses as we left. (once we were outside I let own my tears come...)
We walked back to the hotel and slept soundly after an exhausting day.
This morning, my walking pace back to the hospital was fast enough that Tom logged it as a workout in his squadron's workout database. Just a little anxious to see my Lilly and let her be with us again.
We were allowed back in at 8:30am. When we came through the double doors, the new nurse on duty saw us and said "are you Lilly's mom?" When I nodded, she exclaimed "Oh, GOOD!" Apparently Lilly had made it known to all that SHE. WANTED. MOMMY!
She was miserable when we arrived. Feverish, complaining of a pounding headache, still sporting many tubes inserted and taped to various locations on her body, and wanting her mama and daddy, she had had better days. She was due for her next dose of ibuprofin, but was refusing to drink water or take her meds. Being the smart and quite rational child that she is, once we made it clear that her ticket to get tubes removed and ultimately get out of this place was to drink lots of water and take her medicine by mouth (even if it tasted icky), she began to fight less and slowly cooperate more. The nurse also wisely plugged her IV fluids back in to help with hydration.
What a difference a few hours, some good basic painkillers, some water, even a little yogurt and popsicle--not to mention some good mama/daddy lovin'--can make.
By the time Dr. Oakes and his team arrived for rounds, she was acting much more like herself. Dr. Oakes had them remove her foley catheter, and said she would move to a regular room when one opened up. The milestone she had to meet to be discharged would be to prove that her bladder was functioning well and continue to take her meds and fluids orally.
Never mind moving to a regular room. Within two hours of the catheter being removed, Lilly made it clear she needed to pee (a challenge when having to lie flat in bed but we are creatively managing.) In true Lilly fashion, less than 24 hours after her surgery, Lilly jumped through all the hoops necessary to get her a ticket out of Children's Hospital to the care of Doctor Dad and Nurse Mama at the "Hyatt Hospital."
Our hotel room is perfectly suited for this. As I type, I'm sitting on the sectional sofa that is adjacent to her pull out sofabed, which is separated from our bed by only a half partition wall. We have a ginormous TV that can rotate to face her, with built-in plugs for my iPod to play TV shows and kids' movies I have loaded on it. On the nightstand next to her bed, she can see all the photos we brought for her, the coloring pages and cards her friends have given her. The many built in cubbies next to her bed are great to store the many books, games, toys, and coloring items we brought to entertain her. We have a small fridge, which is now stocked with enough basic essentials to make some meals in our room, and we can order in or do carryout for other meals. (the Greek Festival is taking place a few blocks from here this weekend...I hear you can do carryout--yum!)
Lilly is a much happier kiddo here in the room with us. She misses Jared and Anna and wants to go home soon, but she understands that we have to stay here and lie down for a few more days first. She can start sitting up and moving around on Sunday--at her own pace. Her back is sore--when she moves she complains that it hurts, but she is beginning to move around more, rolling onto her side to color and play with toys on her own. Dr. Oakes wants her to stay in town until her post-op appointment on Monday morning. We are hopeful to get home in time to spend one night with Pop Pop before he flies back to New Jersey!
I know my Anna is missing us very much, so please pray for her tender heart. Otherwise, the kids and Pop Pop seem to be faring very well. I am thankful they are old enough and responsible enough to proceed with life as usual without mom and dad there...maybe we should do this more often so that the display of responsibility takes deeper root!
Thanks again for reading and bearing with my l-o-n-g posts. At some point, I will try to post photos from my phone and my camera....
Yesterday, we sat with her in the Pediatric Intensive Care Unit (PICU) as she mostly slept off the drugs from her surgery and we just tried to keep her hydrated and comfortable. Even though she didn't appear as sick as most kids normally do in the PICU, and mostly likely would have been ok in a regular room, Dr. Oakes wanted her in the PICU because of the possibility that, if she should start leaking spinal fluid or start any bleeding in her cord, she could quickly degrade to a very serious state--possibly resulting in paralysis or death. The nursing care ratio and frequency of monitoring was much more suitable for her in the PICU.
The problem with the PICU, however, were the rules about visiting hours. Many of the children in the PICU are unaware of their parents' presence or absence; Lilly, however, was fully aware when we were there and when we were leaving, and our absence was cause for great anxiety to her. Which meant it was also a cause for great anxiety for me (and, I suspect, the nurses). The first time Tom and I had to leave her from 6pm-8pm, which gave us time to go grab some dinner at a cute little Mexican place a few blocks away. I couldn't really taste the food; it was, however, nice to have a sort of "date night" with my man. While we were gone for dinner, Lilly slept, and didn't really miss us except for the first 30 seconds we were gone, we're told. Having slept much of the day, (and with most of the drugs having made their way out of her system), however, by 8pm she was no longer very drowsy. That was nice for us at first, so we could interact with her while we were permitted to be there. The downside was that by 10pm, when it was time for us to go, she still hadn't really settled into a deep sleep and was fully aware that we were leaving her for the night. Her wonderful PICU nurse, hoping to ease her anxiety, let us give her the next dose of painkillers and hang around about 15 minutes longer than we were supposed to. But it was becoming clear Lilly was not going to doze off anytime soon, and she finally said "I'm so sorry, guys, but it's time..." So, with Lilly clinging to me and crying, I had to pry her fingers off and blow her kisses as we left. (once we were outside I let own my tears come...)
We walked back to the hotel and slept soundly after an exhausting day.
This morning, my walking pace back to the hospital was fast enough that Tom logged it as a workout in his squadron's workout database. Just a little anxious to see my Lilly and let her be with us again.
We were allowed back in at 8:30am. When we came through the double doors, the new nurse on duty saw us and said "are you Lilly's mom?" When I nodded, she exclaimed "Oh, GOOD!" Apparently Lilly had made it known to all that SHE. WANTED. MOMMY!
She was miserable when we arrived. Feverish, complaining of a pounding headache, still sporting many tubes inserted and taped to various locations on her body, and wanting her mama and daddy, she had had better days. She was due for her next dose of ibuprofin, but was refusing to drink water or take her meds. Being the smart and quite rational child that she is, once we made it clear that her ticket to get tubes removed and ultimately get out of this place was to drink lots of water and take her medicine by mouth (even if it tasted icky), she began to fight less and slowly cooperate more. The nurse also wisely plugged her IV fluids back in to help with hydration.
What a difference a few hours, some good basic painkillers, some water, even a little yogurt and popsicle--not to mention some good mama/daddy lovin'--can make.
By the time Dr. Oakes and his team arrived for rounds, she was acting much more like herself. Dr. Oakes had them remove her foley catheter, and said she would move to a regular room when one opened up. The milestone she had to meet to be discharged would be to prove that her bladder was functioning well and continue to take her meds and fluids orally.
Never mind moving to a regular room. Within two hours of the catheter being removed, Lilly made it clear she needed to pee (a challenge when having to lie flat in bed but we are creatively managing.) In true Lilly fashion, less than 24 hours after her surgery, Lilly jumped through all the hoops necessary to get her a ticket out of Children's Hospital to the care of Doctor Dad and Nurse Mama at the "Hyatt Hospital."
Our hotel room is perfectly suited for this. As I type, I'm sitting on the sectional sofa that is adjacent to her pull out sofabed, which is separated from our bed by only a half partition wall. We have a ginormous TV that can rotate to face her, with built-in plugs for my iPod to play TV shows and kids' movies I have loaded on it. On the nightstand next to her bed, she can see all the photos we brought for her, the coloring pages and cards her friends have given her. The many built in cubbies next to her bed are great to store the many books, games, toys, and coloring items we brought to entertain her. We have a small fridge, which is now stocked with enough basic essentials to make some meals in our room, and we can order in or do carryout for other meals. (the Greek Festival is taking place a few blocks from here this weekend...I hear you can do carryout--yum!)
Lilly is a much happier kiddo here in the room with us. She misses Jared and Anna and wants to go home soon, but she understands that we have to stay here and lie down for a few more days first. She can start sitting up and moving around on Sunday--at her own pace. Her back is sore--when she moves she complains that it hurts, but she is beginning to move around more, rolling onto her side to color and play with toys on her own. Dr. Oakes wants her to stay in town until her post-op appointment on Monday morning. We are hopeful to get home in time to spend one night with Pop Pop before he flies back to New Jersey!
I know my Anna is missing us very much, so please pray for her tender heart. Otherwise, the kids and Pop Pop seem to be faring very well. I am thankful they are old enough and responsible enough to proceed with life as usual without mom and dad there...maybe we should do this more often so that the display of responsibility takes deeper root!
Thanks again for reading and bearing with my l-o-n-g posts. At some point, I will try to post photos from my phone and my camera....
Wednesday, September 22, 2010
He is able to do more than we can ask or imagine...
Feeling a huge sense of relief as I type this post. Also feeling like we are on a long airplane ride to nowhere, sitting in chairs endlessly and just waiting...
Tom and I didn't sleep well last night, anticipating an early start to a big day today. Lilly, oblivious to the magnitude of what this day meant, thankfully slept very soundly all night. We had her into the car in time for a 6:30am show time at Surgery, with no food or fluids after midnight (in her case, after about 8pm). After several hours of waiting, prescreenings, more waiting, discussions with anesthesiology, more waiting, meeting the Chinese-speaking neurosurgery fellow that would be assisting Dr. Oakes today, and attempting to distract an increasingly agitated and anxious Lilly, it was time for her to go to the OR. Seeing her anxiety each time anyone in scrubs or a lab coat would appear in our room, the anesthesia nurse wisely decided that a little dose of versed (some call it "happy juice") would be a good idea, as we would not be able to accompany her back to the OR where they would administer the anesthesia. I hated the thought of her being scared and without one of us by her side. So I was thrilled when they suggested the versed.
Lilly, however, was not at all keen on the taste of the versed, spitting much of it back out (narrowly missing my clothes) and fighting against drinking what was left of it. We got a little bit of it into her, and it was enough to take the edge off of her anxiety and relax a little. She was still not happy when it was time for them to wheel her away from us (we could go as far as the double doors into the OR), but she was subdued enough to not try to climb off the gurney. One of the hardest things I've ever had to do was stand there and watch them wheel her away. Not sure if Lilly or I shed more tears. So thankful Tom was by my side.
Every hour or so, they would call us from the OR to give us updates. We had the unexpected blessing of spending some time talking and praying with a couple from our church--Bill and Becky Moulden--who were on their way from FL to a family reunion in Indiana. They decided to stop and try to find us--so sweet, and a great distraction for both Tom and me from the business of waiting.
After a little over 2 hours in surgery, Lilly's doctor appeared to let us know things had gone fabulously. He even said with a smile,"I don't mean to sound smug, but we are quite proud of ourselves!" as he described what they were able to do. Here, in my layman's version of the procedure, is how it went:
For now, it is just so good to sit by her, see her alert (well, in and out for now), and see her wiggle her toes. She really wants to "get up," and "go home," both of which will have to wait for now. I know as the morphine wears off and her pain is managed purely by analgesics, and as she begins to feel better altogether, it is not going to be an easy job for the next few days.
We are so appreciative of the prayers on our behalf, of the e-mails and text messages and blog comments and facebook comments to encourage us. We are also appreciative of Lilly's Sunday School class who showered her with little toys, books, and a card signed by all her friends. So sweet. She is a little bewildered by the outpouring of gifts and love, but it has been fun to watch the delight on her face.
All for now, I have important work to do... More to come. Thanks for reading!
Tom and I didn't sleep well last night, anticipating an early start to a big day today. Lilly, oblivious to the magnitude of what this day meant, thankfully slept very soundly all night. We had her into the car in time for a 6:30am show time at Surgery, with no food or fluids after midnight (in her case, after about 8pm). After several hours of waiting, prescreenings, more waiting, discussions with anesthesiology, more waiting, meeting the Chinese-speaking neurosurgery fellow that would be assisting Dr. Oakes today, and attempting to distract an increasingly agitated and anxious Lilly, it was time for her to go to the OR. Seeing her anxiety each time anyone in scrubs or a lab coat would appear in our room, the anesthesia nurse wisely decided that a little dose of versed (some call it "happy juice") would be a good idea, as we would not be able to accompany her back to the OR where they would administer the anesthesia. I hated the thought of her being scared and without one of us by her side. So I was thrilled when they suggested the versed.
Lilly, however, was not at all keen on the taste of the versed, spitting much of it back out (narrowly missing my clothes) and fighting against drinking what was left of it. We got a little bit of it into her, and it was enough to take the edge off of her anxiety and relax a little. She was still not happy when it was time for them to wheel her away from us (we could go as far as the double doors into the OR), but she was subdued enough to not try to climb off the gurney. One of the hardest things I've ever had to do was stand there and watch them wheel her away. Not sure if Lilly or I shed more tears. So thankful Tom was by my side.
Every hour or so, they would call us from the OR to give us updates. We had the unexpected blessing of spending some time talking and praying with a couple from our church--Bill and Becky Moulden--who were on their way from FL to a family reunion in Indiana. They decided to stop and try to find us--so sweet, and a great distraction for both Tom and me from the business of waiting.
After a little over 2 hours in surgery, Lilly's doctor appeared to let us know things had gone fabulously. He even said with a smile,"I don't mean to sound smug, but we are quite proud of ourselves!" as he described what they were able to do. Here, in my layman's version of the procedure, is how it went:
- they inserted a small scope into her spinal column at L4 (the 4th lumbar (lower back) vertebrae) to look for the filum and any meningocele manque (false nerves that might attach the cord to the spinal column).
- They found and cut the fatty filum to prevent it from attaching at any point in her spinal column as her spine gets straightened.
- They looked from L4 up to L1 for any attachments, and found none. Great news. But Dr. Oakes, having expected to find some issues and being suspicious of what he was not seeing, decided to look up higher.
- They made another cut higher up at L1 and re-inserted the scope to attempt look up higher into her spinal column. Despite his doubts yesterday that they would be able to scope the full length of her spinal column because of limited scope length and maneuverabiliy around her spinal curve, he was excited to tell us that they were able to scope up a good portion of her spine, to the biggest bend in her curve, at T4, which is the 4th vertebral body from the top in the thoracic region of the back. This location is just above the point at which her spinal cord begins to split, past the area of concern.
- So, only two small incisions, about four inches apart, on her back. No blood transfusions.
- The best news to our ears: he was thrilled to report that he saw NO issues or concerns whatsoever in her cord. This means she is now cleared from a neurosurgical standpoint for the orthopedic issues to be addressed by Dr. Campbell at CHOP.
For now, it is just so good to sit by her, see her alert (well, in and out for now), and see her wiggle her toes. She really wants to "get up," and "go home," both of which will have to wait for now. I know as the morphine wears off and her pain is managed purely by analgesics, and as she begins to feel better altogether, it is not going to be an easy job for the next few days.
We are so appreciative of the prayers on our behalf, of the e-mails and text messages and blog comments and facebook comments to encourage us. We are also appreciative of Lilly's Sunday School class who showered her with little toys, books, and a card signed by all her friends. So sweet. She is a little bewildered by the outpouring of gifts and love, but it has been fun to watch the delight on her face.
All for now, I have important work to do... More to come. Thanks for reading!
Tuesday, September 21, 2010
Pre-Op Day Went Well!
It has been a long 24 hours!
Pop Pop arrived last night around 8:30pm and had to hit the ground running...I had typed up the week's schedule of kids' activities, given him lists of names and phone numbers and carpool information, had entered many locations on my car's GPS for him, left lists of meals I had left in the freezer, and gave him the quickest possible briefing on what the week would hold for him and my big kids. Not the normal reception I give to beloved family members who come to visit; I had to preface everything when he first came through the front door with "welcome to my world!" I should have added "...hang on tight!" Speaking to him throughout today, he is doing fine. The worst thing so far is that he can't get our TV to work--but that's part of my world, too. The big kids are faring just fine--even though I miss them terribly--and I am so thankful to know they are in good hands. A stretching experience for all of us, for sure. Thanks Pop Pop!
Once we had given the rapid fire list of instructions to Pop Pop, we loaded Tom's truck and hit the road around 9:30pm. We made it about 2 1/2 hours and finally stopped to sleep. Lilly, thankfully, fell asleep before we even were out of Niceville, and slept the whole drive. Up early, we were back on the road to Birmingham by 7am.
Our day at Children's Hospital began in the radiology department, where (in order to avoid general anesthesia two days in a row) Lilly was to undergo a CT scan WITHOUT sedation or anesthesia--a change in plans made yesterday, when we were still under the impression that they were going to put her under in order to guarantee a successful CT image. Lilly rose beautifully to the occasion--what a trooper. She managed to successfully hold still and hold back her tears and fears for the CT scan. On a roll, she then--for the first time EVER--managed to undergo a battery of lying- and standing-x-rays without a single whipmer or tear. Amazing how far she has come, and what a great God we serve--I know he is hearing the prayers of so many of you!
Following radiology, we were back to neurosurgery to talk to Dr. Oakes about what he saw on her 3D CT reconstruction of her spine and what his plans are for the surgery tomorrow. Here is my non-medical take on what said: he sees no bony or cartilege structures forming any kind of a "septum" between the halves of her split spinal cord, which is a good thing. He suspects there may be some "meningocele manque," or "false nerves," which don't show up on MRI and are basically fibrous membranes that could be acting to restrict the movement of the spinal cord. He plans to look for those by inserting a very very tiny scope through her sacrum and look as far up as her T10 vertebrae. If he sees them, he will remove them, and will work his way up as far as he can with the scope to ensure he removes all of them. He does not feel that he can look any farther up her spinal canal than that with the scope, and does not feel the risk of actually cutting her farther up and opening up her spinal column is worth the risks. He readily admits there are many unknowns and he (and we) will have to take things as they come tomorrow. He could be done in as little as an hour, but it could also take many more hours, depending on what he finds with the scope. We are praying for the best.
With no rooms available at the Ronald McDonald house, we are "roughing it" at the nearby Hyatt place, which could also act as a recovery room for Lilly if things are easy tomorrow. She will spend tomorrow night in the pediatric intensive care unit (where we are not permitted to stay overnight...my mama brain cannot get wrapped around that one yet), and then from there either get moved to a regular hospital room for 3 more days, or perhaps get discharged to lay flat in our hotel room for 3 more days to prevent any spinal fluid leaking.
So, we had a lovely dinner at a place called "nothing but noodles" which Lilly loved, and are now bathed and getting settled in for the night after checking in with Pop Pop, Jared, and Anna.
Early morning tomorrow--6:30am show time, with surgery likely to begin by 9am. Thanks for your prayers for Lilly! We have a wonderful support team. Thanks for the many facebook messages and e-mails from many of you.
Stay tuned on facebook for brief updates, and more details here as time allows. Night night, all.
Pop Pop arrived last night around 8:30pm and had to hit the ground running...I had typed up the week's schedule of kids' activities, given him lists of names and phone numbers and carpool information, had entered many locations on my car's GPS for him, left lists of meals I had left in the freezer, and gave him the quickest possible briefing on what the week would hold for him and my big kids. Not the normal reception I give to beloved family members who come to visit; I had to preface everything when he first came through the front door with "welcome to my world!" I should have added "...hang on tight!" Speaking to him throughout today, he is doing fine. The worst thing so far is that he can't get our TV to work--but that's part of my world, too. The big kids are faring just fine--even though I miss them terribly--and I am so thankful to know they are in good hands. A stretching experience for all of us, for sure. Thanks Pop Pop!
Once we had given the rapid fire list of instructions to Pop Pop, we loaded Tom's truck and hit the road around 9:30pm. We made it about 2 1/2 hours and finally stopped to sleep. Lilly, thankfully, fell asleep before we even were out of Niceville, and slept the whole drive. Up early, we were back on the road to Birmingham by 7am.
Our day at Children's Hospital began in the radiology department, where (in order to avoid general anesthesia two days in a row) Lilly was to undergo a CT scan WITHOUT sedation or anesthesia--a change in plans made yesterday, when we were still under the impression that they were going to put her under in order to guarantee a successful CT image. Lilly rose beautifully to the occasion--what a trooper. She managed to successfully hold still and hold back her tears and fears for the CT scan. On a roll, she then--for the first time EVER--managed to undergo a battery of lying- and standing-x-rays without a single whipmer or tear. Amazing how far she has come, and what a great God we serve--I know he is hearing the prayers of so many of you!
Following radiology, we were back to neurosurgery to talk to Dr. Oakes about what he saw on her 3D CT reconstruction of her spine and what his plans are for the surgery tomorrow. Here is my non-medical take on what said: he sees no bony or cartilege structures forming any kind of a "septum" between the halves of her split spinal cord, which is a good thing. He suspects there may be some "meningocele manque," or "false nerves," which don't show up on MRI and are basically fibrous membranes that could be acting to restrict the movement of the spinal cord. He plans to look for those by inserting a very very tiny scope through her sacrum and look as far up as her T10 vertebrae. If he sees them, he will remove them, and will work his way up as far as he can with the scope to ensure he removes all of them. He does not feel that he can look any farther up her spinal canal than that with the scope, and does not feel the risk of actually cutting her farther up and opening up her spinal column is worth the risks. He readily admits there are many unknowns and he (and we) will have to take things as they come tomorrow. He could be done in as little as an hour, but it could also take many more hours, depending on what he finds with the scope. We are praying for the best.
With no rooms available at the Ronald McDonald house, we are "roughing it" at the nearby Hyatt place, which could also act as a recovery room for Lilly if things are easy tomorrow. She will spend tomorrow night in the pediatric intensive care unit (where we are not permitted to stay overnight...my mama brain cannot get wrapped around that one yet), and then from there either get moved to a regular hospital room for 3 more days, or perhaps get discharged to lay flat in our hotel room for 3 more days to prevent any spinal fluid leaking.
So, we had a lovely dinner at a place called "nothing but noodles" which Lilly loved, and are now bathed and getting settled in for the night after checking in with Pop Pop, Jared, and Anna.
Early morning tomorrow--6:30am show time, with surgery likely to begin by 9am. Thanks for your prayers for Lilly! We have a wonderful support team. Thanks for the many facebook messages and e-mails from many of you.
Stay tuned on facebook for brief updates, and more details here as time allows. Night night, all.
Sunday, September 19, 2010
Our God who Heals--Jehovah Rapha
Just a quick note as I have packing and laundry to get back to. I just had to take a minute, however, and post something Lilly said tonight, totally unprompted, that made me smile and made my heart happy:
She has a little hangnail on her index finger, and has been complaining about it for 2 days. Tonight at dinner she was whimpering about it and asked for a bandaid. Daddy got her a nice bandaid and wrapped it right up. All was well. Later in the evening, after using the restroom and washing her hands, the bandaid was wet and began to fall off. She decided to remove it. When she saw that the hangnail was already better, she said (using Chinglish which she hardly ever does anymore!) "Xie Xie, God!"
Praise God that she is learning that healing is of the Lord. May she continue to grow in the knowledge of that truth and grow in her trust of our amazing God in the days and months ahead.
She has a little hangnail on her index finger, and has been complaining about it for 2 days. Tonight at dinner she was whimpering about it and asked for a bandaid. Daddy got her a nice bandaid and wrapped it right up. All was well. Later in the evening, after using the restroom and washing her hands, the bandaid was wet and began to fall off. She decided to remove it. When she saw that the hangnail was already better, she said (using Chinglish which she hardly ever does anymore!) "Xie Xie, God!"
Praise God that she is learning that healing is of the Lord. May she continue to grow in the knowledge of that truth and grow in her trust of our amazing God in the days and months ahead.
Thursday, September 16, 2010
Getting Geared Up
We are getting ready for a big week next week.
Lilly is scheduled for a CT with general anaesthesia on Tuesday the 21st, and her first surgery is scheduled for Wednesday the 22nd, at Children's Hospital of Alabama, in Birmingham. We are so thankful that things are falling into place to have her spinal cord issues addressed in preparation for her VEPTR surgery to follow at CHOP. We are thankful for the expertise of pediatric neurosurgeon Dr. Oakes, and the friendliness and professionalism of his staff. We are hopeful that we will be able to stay at the Birmingham Ronald McDonald House--though one of us can stay with Lilly at all times in her hospital room.
We are thankful that Tom's dad will be flying in from New Jersey to stay with Jared and Anna so they can stay in their own home and not miss any school while we're away. He knows how to cook pasta, so they will be happy! We have wonderful friends and neighbors who are ready and poised to jump in and help, carpool moms lined up, etc.
Lilly is anxious. In addition to dealing with some transitions to a longer school day and a 3-day/week program with some changes in the children and teachers, she is clearly growing more anxious as we get ready for next week. We have talked to her in basic terms about the surgery ("Dr. Oakes will be helping to get your back ready for Dr. Campbell to make your back turn from as "S" into an "I") but try not to dwell on it and I am trying hard to keep life as normal as possible this week. But she hears us talking to others (when we think she's not listening) and she knows it's coming. She is becoming clingy and insecure, and is demanding my presence more and more frequently at bedtime and through the night, something she really hasn't needed for months. I don't like feeling like we are backsliding, but am trying to be sympathetic to her insecurities and balance her need for my presence with her need to understand that we will ALWAYS be here and will NEVER leave her, even if we are not in the very same room at every moment. As much as I would frequently second-guess my mothering when Jared and Anna were this age, SO much more do I find myself questioning what is best for Lilly. Praying on a daily, moment-by-moment basis for wisdom because I have desperate need for it.
What to expect next week:
Lilly is scheduled for a CT with general anaesthesia on Tuesday the 21st, and her first surgery is scheduled for Wednesday the 22nd, at Children's Hospital of Alabama, in Birmingham. We are so thankful that things are falling into place to have her spinal cord issues addressed in preparation for her VEPTR surgery to follow at CHOP. We are thankful for the expertise of pediatric neurosurgeon Dr. Oakes, and the friendliness and professionalism of his staff. We are hopeful that we will be able to stay at the Birmingham Ronald McDonald House--though one of us can stay with Lilly at all times in her hospital room.
We are thankful that Tom's dad will be flying in from New Jersey to stay with Jared and Anna so they can stay in their own home and not miss any school while we're away. He knows how to cook pasta, so they will be happy! We have wonderful friends and neighbors who are ready and poised to jump in and help, carpool moms lined up, etc.
Lilly is anxious. In addition to dealing with some transitions to a longer school day and a 3-day/week program with some changes in the children and teachers, she is clearly growing more anxious as we get ready for next week. We have talked to her in basic terms about the surgery ("Dr. Oakes will be helping to get your back ready for Dr. Campbell to make your back turn from as "S" into an "I") but try not to dwell on it and I am trying hard to keep life as normal as possible this week. But she hears us talking to others (when we think she's not listening) and she knows it's coming. She is becoming clingy and insecure, and is demanding my presence more and more frequently at bedtime and through the night, something she really hasn't needed for months. I don't like feeling like we are backsliding, but am trying to be sympathetic to her insecurities and balance her need for my presence with her need to understand that we will ALWAYS be here and will NEVER leave her, even if we are not in the very same room at every moment. As much as I would frequently second-guess my mothering when Jared and Anna were this age, SO much more do I find myself questioning what is best for Lilly. Praying on a daily, moment-by-moment basis for wisdom because I have desperate need for it.
What to expect next week:
- Monday afternoon, 20 September: Tom's dad (Pop Pop) arrives! Yay!
- Late Monday night or very early Tuesday: Drive to Birmingham
- Tuesday, 21 September: 9am appointment with Dr. Oakes. Noon CT scan with general anaesthesia.
- Wednesday, 22 September: spinal cord surgery to address Lilly's split spinal cord--diastematomyelia--to remove the bony or cartilege septum that separates the two halves, possibly remove fatty filum and un-tether the cord if CT scan indicates it is necessary.
- Wednesday-Sunday or Monday?: Lilly will recover flat on her back for 3-4 days, greatly restricted in her movement. I'm told she will not be sedated and will be in a regular room, but we're wondering if it might require ICU for at least the first day or two, with sedation...
- Monday the 27th: Tentatively scheduled for one-week followup with Dr. Oakes. Hoping she will be discharged this day so we can head home and be there when Pop Pop needs to fly home.
- Tuesday, 28 September: Pop Pop flies home.
Thursday, September 2, 2010
Whew, What a Day!
Lilly and I made it safely to and from Birmingham yesterday for her renal sonogram and urodynamics tests. The drive each way went smoothly (found a new, faster, more open way up to Birmingham in the morning, but my GPS diverted me a to slower route on the way home...grrrr.) After a 5am departure from Niecville, we arrived at Children's in plenty of time for her first appointment. They actually got us right in on time for her renal sonogram (she cried but mostly cooperated) and it took all of 5 minutes to complete. Then we went back downstairs to let them know we were done with that and owuld come back at 2pm as instructed for the second test. Rather than leaving the hospital for a lengthy lunch break, however, they got us right into the urodynamics room, sliding us into a slot for someone who had failed to show up as scheduled for their appointment. What a blessing! We were completely done with both of Lilly's tests about 90 minutes before we were supposed to even start the second test! We had just enough time waiting for the urologist to arrive to practice a urodymics test on her baby doll, which I think helped to alleviate her fears somewhat. It was not a pleasant procudure for Lilly--who would like to have a catheter artificially filling the bladder and then be expected to empty your bladder while lying on a hospital table? But she was a real trooper and, with minimal crying--mostly whimpering--she cooperated, held still, and the test was over fairly quickly. Praise God, everything looks completely normal!
So, rather than spending the night and driving home THursday, we pressed on home in time for Lilly to go to Cubbies. She took a nice long nap on the drive home.
We saw some behavior regression last night, however, at bedtime. These days, normally she is happy as can be when we tuck her in, kiss her goodnight, and retire to our own bedroom. Last night, however, she cried hard when I put her to bed, saying she "didn't want to sleep alone" and, even while I laid next to her in her bedroom, continued to whimper for quite awhile. I think the long day, early morning, and traumatic medical procedures took their toll on my sweet girl. I know as we look ahead at surgery in a few weeks, the stress of it all is likely to push her in this direction so extra patience and wisdom are needed. Thankfully last night, once she was asleep, she slept soundly through the night.
So, 3 weeks from now, she will face her first surgery. We are confirmed for a CT with sedation and pre op on the 21st, and spinal cord surgery scheduled on the 22nd. Stay tuned, and thanks for reading and praying.
So, rather than spending the night and driving home THursday, we pressed on home in time for Lilly to go to Cubbies. She took a nice long nap on the drive home.
We saw some behavior regression last night, however, at bedtime. These days, normally she is happy as can be when we tuck her in, kiss her goodnight, and retire to our own bedroom. Last night, however, she cried hard when I put her to bed, saying she "didn't want to sleep alone" and, even while I laid next to her in her bedroom, continued to whimper for quite awhile. I think the long day, early morning, and traumatic medical procedures took their toll on my sweet girl. I know as we look ahead at surgery in a few weeks, the stress of it all is likely to push her in this direction so extra patience and wisdom are needed. Thankfully last night, once she was asleep, she slept soundly through the night.
So, 3 weeks from now, she will face her first surgery. We are confirmed for a CT with sedation and pre op on the 21st, and spinal cord surgery scheduled on the 22nd. Stay tuned, and thanks for reading and praying.
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