Wednesday May 22, 2013
Well, Mom is home. She and Dad stepped in the door yesterday morning. There were no other episodes with her heart and no reoccurance of arythmia.
To be cautious, the cardiologist has recommended that we postpone Mom's brain surgery until next week.
Her heart needs rest.
This is completely understandable, although we were anxious to get as much of the poison out of her brain as possible - as soon as possible. We, Mom especially, have been awaiting Friday's surgery for three weeks, preparing both physically and emotionally.
But you just can't mess with the heart.
So, we will wait, and she will rest.
I have a correction to my last post as well. The MRI that she will have just prior to surgery will take place in Novi, where she is having her brain surgery. I was mistaken when I wrote that she would have the MRI locally, and then have to drive to Novi for surgery. My apologies.
So, we don't have a definite day or time of the surgery at this point. Dad was going to call and set that up.
When she got home, he said she was a little "wobbly" and "light headed", which I suppose is to be expected.
I talked with her on the phone for a few (I was on speaker), and she sounded SO much better! Chipper and happy to be home. This was all good to me.
Tomorrow, I will be bringing some meals over that were made by some of my friends (and friends of Dad & Di) that will feed them while she is recovering. Every little bit helps to lighten the load on Dad or friends who are caretaking while she is in recovery at home. I am incredibly thankful to all of my/our friends and family for their support, prayers and meals. My heart aches as I think of the long journey we have yet to endure - and I want to do everything for them.
But I can't.
And it's amazing to me how people - families, friends, acquaintances, communities - pull together to support one another.
So, let's keep it up! Thank you again, and I'll let you all know when her surgery is next scheduled for and we'll continue to pray that she stays healthy and stable enough to get there this time!
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Wednesday, May 22, 2013
Monday, May 20, 2013
One Day at a Time - An Update On Mom
Monday May 20, 2013
Just got an update from Dad:
"Di is still in the hospital for another 24 for observation. They now are fairly confident that a vessel spasmed causing the arythmia. She feels fine, but 48 hours is the time frame of possible reoccurance in this situation.
We now have to report to the (local) hospital on Friday morning at 5:00 am for a MRI prior to surgery. We still don't know if her surgery will be postponed or not. The local hospital is talking to the surgeons' office with details. The local hospital is also taking measures to avoid potponement of Friday's surgery."
Dad is doing such a great job!! He is informing immediate family of the latest details, and I am enforming everyone else through this outlet.
If you're just getting caught up, you can read the updates on Mom (Dianne) from the beginning. In Order:
Never Give Up The Fight
It's The Calm
Hope Renewed
A Bump In The Road
It's been just over 3 weeks since we first found out, and what a whirlwind it's been!
I will continue to keep you all updated as things develop.
Our family cannot thank you enough for your continued support and prayers - and we need them to continue!
Just got an update from Dad:
"Di is still in the hospital for another 24 for observation. They now are fairly confident that a vessel spasmed causing the arythmia. She feels fine, but 48 hours is the time frame of possible reoccurance in this situation.
We now have to report to the (local) hospital on Friday morning at 5:00 am for a MRI prior to surgery. We still don't know if her surgery will be postponed or not. The local hospital is talking to the surgeons' office with details. The local hospital is also taking measures to avoid potponement of Friday's surgery."
Dad is doing such a great job!! He is informing immediate family of the latest details, and I am enforming everyone else through this outlet.
If you're just getting caught up, you can read the updates on Mom (Dianne) from the beginning. In Order:
Never Give Up The Fight
It's The Calm
Hope Renewed
A Bump In The Road
It's been just over 3 weeks since we first found out, and what a whirlwind it's been!
I will continue to keep you all updated as things develop.
Our family cannot thank you enough for your continued support and prayers - and we need them to continue!
Sunday, May 19, 2013
A Bump In the Road
Ah, Sunday... We had an entire day planned with fun things outside with the girls, a little grocery shopping, maybe some ice cream after dinner...
But something happened.
I got a phone call from my dad around 9:30 in the morning.
Mom (Dianne) had a heart attack this morning.
My knees almost buckled as he proceeded to tell me the few details he could muster. He said they were still in the ER, and he didn't have many answers yet.
I immediately made arrangements for the girls to head to their Bumpa & Gwi Gwi's for a few hours. I called both of my brothers to let them know what had happened, and we left for the hospital.
This time seemed different. My dad seemed a little more "out of it", like he needed me.
When we got to the hospital, I gave hugs and surveyed her well-being. She seemed ok. She was unable to move, they were making her lie still until they determined it was okay for her to move or sit up.
I started asking questions. This is what happened:
Last night she had been suffering from some pretty severe joint pain. Severe enough that it brought her to tears. She took some pain meds and went to bed. When she woke this morning, her knees were still in a lot of pain.
They were drinking coffee this morning and throwing the frisbee for the dog. Suddenly, Mom said that her chest was starting to hurt. It got to the point that Dad felt the need to have her checked out by an EMT, so he called their neighbor, who is a firefighter for their city. When he didn't answer, dad left to go over to his house. As he walked out the front door, his neighbor was also, coming toward dad's house. Dad explained what was going on, and the neighbor immediately called it in as a Priority 1.
When the EMT crew showed up, they checked her out and determined she needed to be taken to the hospital. They put her in the ambulance, my dad followed, and off they were.
She had just had an EKG this past Tuesday in preparation for her tumor surgery, and was completely cleared for surgery.
But on the way to hospital, she went into v-tach (Ventricular tachycardia - rapid heartbeat) and had to be shocked.
When they got to the hospital, she had many tests. Of course, my dad was swift about letting them know about her brain tumor, and the upcoming surgery. That obviously changed their course of treatment for the heart attack.
Initially, they were thinking her brain surgery would have to be postponed, that she would need stints placed in or near her heart and that she had major heart issues that have been overlooked.
However, all of the tests came back normal... boring.
No blockages, no stints, NOTHING.
They feel it was maybe some plaque that had broken loose, got stuck, and passed through. They're not really sure, because nothing showed up in the tests, but they feel there was a blockage at some point that passed.
We thought maybe the stress on her body from the tumor had contributed to her heart attack.
Either way, they admitted her for the night. She will be in the hospital until tomorrow.
At this point, we were told no stints are necessary, no heart surgery, Asprin for medication as she can't be on any blood thinners, and her surgery is still on for Friday.
She's a little cranky - understandably, tired and really ready to go home.
We could really use your prayers at this time. We are hoping for no more hiccups before her tumor surgery. Please pray for a smooth week. Please pray for healing and peace for her.
Please pray that my dad continues to be her rock. Please also pray that he is able to balance this situation, his full time job, the added responsibilities at home - and that he is blessed with the help that he needs right when he needs it.
I thank you for your thoughts and prayers sincerely - we couldn't get through this without them.
This week will be crazy, long, calm, short, whatever... it will just be. Friday is such a big day - we just want to get her to that point. Then we will hopefully have more answers, and hopefully have more of an understanding of what we're dealing with.
I'll keep you posted. And I'll put this post up a couple of times so that everyone who needs or wants to see it can - no matter what time of day it is.
Till next time...
But something happened.
I got a phone call from my dad around 9:30 in the morning.
Mom (Dianne) had a heart attack this morning.
My knees almost buckled as he proceeded to tell me the few details he could muster. He said they were still in the ER, and he didn't have many answers yet.
I immediately made arrangements for the girls to head to their Bumpa & Gwi Gwi's for a few hours. I called both of my brothers to let them know what had happened, and we left for the hospital.
This time seemed different. My dad seemed a little more "out of it", like he needed me.
When we got to the hospital, I gave hugs and surveyed her well-being. She seemed ok. She was unable to move, they were making her lie still until they determined it was okay for her to move or sit up.
I started asking questions. This is what happened:
Last night she had been suffering from some pretty severe joint pain. Severe enough that it brought her to tears. She took some pain meds and went to bed. When she woke this morning, her knees were still in a lot of pain.
They were drinking coffee this morning and throwing the frisbee for the dog. Suddenly, Mom said that her chest was starting to hurt. It got to the point that Dad felt the need to have her checked out by an EMT, so he called their neighbor, who is a firefighter for their city. When he didn't answer, dad left to go over to his house. As he walked out the front door, his neighbor was also, coming toward dad's house. Dad explained what was going on, and the neighbor immediately called it in as a Priority 1.
When the EMT crew showed up, they checked her out and determined she needed to be taken to the hospital. They put her in the ambulance, my dad followed, and off they were.
She had just had an EKG this past Tuesday in preparation for her tumor surgery, and was completely cleared for surgery.
But on the way to hospital, she went into v-tach (Ventricular tachycardia - rapid heartbeat) and had to be shocked.
When they got to the hospital, she had many tests. Of course, my dad was swift about letting them know about her brain tumor, and the upcoming surgery. That obviously changed their course of treatment for the heart attack.
Initially, they were thinking her brain surgery would have to be postponed, that she would need stints placed in or near her heart and that she had major heart issues that have been overlooked.
However, all of the tests came back normal... boring.
No blockages, no stints, NOTHING.
They feel it was maybe some plaque that had broken loose, got stuck, and passed through. They're not really sure, because nothing showed up in the tests, but they feel there was a blockage at some point that passed.
We thought maybe the stress on her body from the tumor had contributed to her heart attack.
Either way, they admitted her for the night. She will be in the hospital until tomorrow.
At this point, we were told no stints are necessary, no heart surgery, Asprin for medication as she can't be on any blood thinners, and her surgery is still on for Friday.
She's a little cranky - understandably, tired and really ready to go home.
We could really use your prayers at this time. We are hoping for no more hiccups before her tumor surgery. Please pray for a smooth week. Please pray for healing and peace for her.
Please pray that my dad continues to be her rock. Please also pray that he is able to balance this situation, his full time job, the added responsibilities at home - and that he is blessed with the help that he needs right when he needs it.
I thank you for your thoughts and prayers sincerely - we couldn't get through this without them.
This week will be crazy, long, calm, short, whatever... it will just be. Friday is such a big day - we just want to get her to that point. Then we will hopefully have more answers, and hopefully have more of an understanding of what we're dealing with.
I'll keep you posted. And I'll put this post up a couple of times so that everyone who needs or wants to see it can - no matter what time of day it is.
Till next time...
Friday, May 3, 2013
Hope Renewed
Thursday May 2, 2013
I got a rare early morning phone call today. Mom called "just to hear my sweet voice". It was 7:20 am. Of course I answered the phone thinking something was wrong.
But nothing was wrong.
She was sitting outside, playing frisbee with their dog, watching the sun come up, and thinking... Just thinking.
She didn't want to miss the moment to tell me how much she loves me. And she wanted to tell me how proud of me she is for coming as far as I have recently.
The call got emotional at one point, but I tried to divert. I knew she had an important appointment this morning with a potential Neurosurgeon that would handle her case. I wanted to keep her spirits up.
She and Dad went to Southfield, MI today to meet with a Neurosurgeon, Dr. Ryan Barrett.
They. Love. Him.
A-typical of Neurosurgeons, he had a great bedisde manner, he was comforting, supportive, positive and patient. I say a-typical because Neurosurgeons are brainiacs. Perfectionists. Egotistical. Dry. Unemotional.
Not this guy.
Her surgery is scheduled for Friday May 24th in Novi, MI at Providence Park Hospital. She will spend 2-3 days there post-op. They were told there is little pain with this surgery post-op as well. They will shave her hair just in the spot of the incision. He will remove a piece of the skull, and remove what he can of the tumor.
They got some answers today FINALLY!
They were told for sure it is cancer. We still don't know what type of cancer. This "thing" now has a name... Something, something, something Blastoma. You might laugh, but I am getting this information from my dad, who is riding this roller coaster blindly. I'm sure that the overwhelming amount of information they received was incredible. The only word he remembered was Blastoma.
The cancer does not appear to have metastasised. It appears to be primary. I learned what this means just today. To be primary means (I think) that this "tumor" is singular. This is the one source of cancer in her body. There isn't another "primary" cell or tumor that has grown to this spot. The surgeon did agree that this tumor has been there for some time.
Before he can tell the stage of cancer, or the type, he has to get into her brain. He needs to biopsy. There's obviously only one way to biopsy a tumor in the brain (at least in this case)... and that's the surgery.
Dr. Barrett showed them the crucial parts of the brain that you don't want a tumor (as if you could choose), and where her tumor is is not there. He explained that it is in a place that is fairly easy to get to. Although hers is not in the "crucial" part of the brain, it is still inside her brain, not on it. So the surgery will be tricky.
They feel they can remove "most of it". Chemo and radiation are a sure thing after the surgery and that can be done by Oncology in Grand Rapids.
They were told that the outlook "looks good".
The deficits after the surgery are unknown. She may be left with the deficits she has now - forgetfulness, loss of balance, disorientation, and some lack of eyesight / focus. She may be left worse off. It is unsure and too soon to tell. So many things are unknown at this point. But in the spirit of "one step at a time", at least now we have a surgeon that we trust, and is seemingly optimistic.
I received a message today from Di's best friend of 40-some years. She lives on the East side of the state, and met with them before the appointment. The night before the appointment, a story aired on their local news about this particular surgeon. Read the story here: http://www.wxyz.com/dpp/news/cancer-treatment-saves-local-womans-life
It is the story of a woman who was treated by Dr. Barrett and "he saved her life". She is "doing great and full of life again". Mom's friend saw this as a sign. And our hope is renewed every time we see these signs!
I was speaking with my dad this evening, and he expressed how amazing the outpouring of love and support has been. They are humbled by the phone calls, texts, emails, Facebook messages, cards... you name it! He was almost in tears as he expressed his gratitude for everything. So, thank you. As a team, as a family and as a community, we will carry them through this.
They were given the option to have the surgery as soon as next week. Mom said heck no! On May 11, they will be celebrating 23 years of marriage! Mom wants to wait the three weeks to give her some time to live and enjoy her family and friends. And they were told it's not an emergency. Obviously the sooner the better that we get that disease out of her, but a few weeks won't make much of a difference.
I will update with more information as it comes, but until her surgery I feel there won't be much more medical information to update. But I will write about how she is doing, her demeanor, and how she's getting along. Thank you for reading, and thank you for all of the support! Keep it coming - it's still going to be a long road!
I got a rare early morning phone call today. Mom called "just to hear my sweet voice". It was 7:20 am. Of course I answered the phone thinking something was wrong.
But nothing was wrong.
She was sitting outside, playing frisbee with their dog, watching the sun come up, and thinking... Just thinking.
She didn't want to miss the moment to tell me how much she loves me. And she wanted to tell me how proud of me she is for coming as far as I have recently.
The call got emotional at one point, but I tried to divert. I knew she had an important appointment this morning with a potential Neurosurgeon that would handle her case. I wanted to keep her spirits up.
She and Dad went to Southfield, MI today to meet with a Neurosurgeon, Dr. Ryan Barrett.
They. Love. Him.
A-typical of Neurosurgeons, he had a great bedisde manner, he was comforting, supportive, positive and patient. I say a-typical because Neurosurgeons are brainiacs. Perfectionists. Egotistical. Dry. Unemotional.
Not this guy.
Her surgery is scheduled for Friday May 24th in Novi, MI at Providence Park Hospital. She will spend 2-3 days there post-op. They were told there is little pain with this surgery post-op as well. They will shave her hair just in the spot of the incision. He will remove a piece of the skull, and remove what he can of the tumor.
They got some answers today FINALLY!
They were told for sure it is cancer. We still don't know what type of cancer. This "thing" now has a name... Something, something, something Blastoma. You might laugh, but I am getting this information from my dad, who is riding this roller coaster blindly. I'm sure that the overwhelming amount of information they received was incredible. The only word he remembered was Blastoma.
The cancer does not appear to have metastasised. It appears to be primary. I learned what this means just today. To be primary means (I think) that this "tumor" is singular. This is the one source of cancer in her body. There isn't another "primary" cell or tumor that has grown to this spot. The surgeon did agree that this tumor has been there for some time.
Before he can tell the stage of cancer, or the type, he has to get into her brain. He needs to biopsy. There's obviously only one way to biopsy a tumor in the brain (at least in this case)... and that's the surgery.
Dr. Barrett showed them the crucial parts of the brain that you don't want a tumor (as if you could choose), and where her tumor is is not there. He explained that it is in a place that is fairly easy to get to. Although hers is not in the "crucial" part of the brain, it is still inside her brain, not on it. So the surgery will be tricky.
They feel they can remove "most of it". Chemo and radiation are a sure thing after the surgery and that can be done by Oncology in Grand Rapids.
They were told that the outlook "looks good".
The deficits after the surgery are unknown. She may be left with the deficits she has now - forgetfulness, loss of balance, disorientation, and some lack of eyesight / focus. She may be left worse off. It is unsure and too soon to tell. So many things are unknown at this point. But in the spirit of "one step at a time", at least now we have a surgeon that we trust, and is seemingly optimistic.
I received a message today from Di's best friend of 40-some years. She lives on the East side of the state, and met with them before the appointment. The night before the appointment, a story aired on their local news about this particular surgeon. Read the story here: http://www.wxyz.com/dpp/news/cancer-treatment-saves-local-womans-life
It is the story of a woman who was treated by Dr. Barrett and "he saved her life". She is "doing great and full of life again". Mom's friend saw this as a sign. And our hope is renewed every time we see these signs!
I was speaking with my dad this evening, and he expressed how amazing the outpouring of love and support has been. They are humbled by the phone calls, texts, emails, Facebook messages, cards... you name it! He was almost in tears as he expressed his gratitude for everything. So, thank you. As a team, as a family and as a community, we will carry them through this.
They were given the option to have the surgery as soon as next week. Mom said heck no! On May 11, they will be celebrating 23 years of marriage! Mom wants to wait the three weeks to give her some time to live and enjoy her family and friends. And they were told it's not an emergency. Obviously the sooner the better that we get that disease out of her, but a few weeks won't make much of a difference.
I will update with more information as it comes, but until her surgery I feel there won't be much more medical information to update. But I will write about how she is doing, her demeanor, and how she's getting along. Thank you for reading, and thank you for all of the support! Keep it coming - it's still going to be a long road!
Wednesday, March 13, 2013
Ava Update 3-13-13
I was going to update my Facebook status again, but I haven't written in a LOOOOONG time, and I'm sitting here at the hospital, just Ava and me, and I was smart enough to bring a laptop so I didn't have to update on my tiny iPhone... Plus, I've had the serious urge to write.
No More IV! THIS miraculous event happened on accident... her IV blew out again, and instead of putting her through the trauma of trying to find a good vein, we asked the Powers That Be if we could do medication orally from now on and behold! They said YES! One less point of misery for my baby, and one small step closer to going home! After the trauma of last night and blowing out three veins while trying to find a good one, this is MUCH welcomed news!
Big sister Hannah came up to see Ava today and that did both girls good. Ava sure did cry when she left though. They have missed each other, and Hannah has been a little confused as well with everything going on.
Still no lab results - either from the blood or the biopsy they took. We were told that since she started receiving antibiotics so soon in the ER, the blood and tissue samples would already have been tainted by those antibiotics. Each day that goes by without an answer is hard - and fills the future with a bit of fear that this may happen again. But with faith, we try to cling to the chance that this was a freak thing.
She is SO crabby! And it's hard to see her so crabby, when I know that any other time she is awake, she is FULL of joy. She goes from yelling at people to move out of her way because she can't see the TV, to telling us all to stop talking because she can't hear her movie (Tangled - for the 15th time today), to telling whoever is closest that they have stinky breath. I made the monumental mistake of asking her ever so nicely to try to be a little nicer to people, and that just made her cry! She can't help it... she's grumpy! She's been through so much in the last 3 days! Immediately after one of her lash-outs, she either falls asleep or has one of her many-a-day meltdowns about wanting to go home. She misses home. My heart aches for her. Aches. Literally. Watching in pure helplessness as my baby girl is poked and prodded, she doesn't feel good, she doesn't understand, and she can't go home. It's torture for me... and worse for her.
I haven't been alone with her yet... which is good I guess - we are blessed to be surrounded by so many friends and family. But I want to be alone with her. I want to feel like her Mommy. Tonight is my night to stay overnight at the hospital. The rest of the week has been split up between her daddy, her Bumpa (overnights) and the visitors we've had during the day. I am truly in awe by how Matt's and my friends and families have come together to not only be here for Ava, but also for Hannah. Hannah's 7th birthday was yesterday. I stayed home that morning, made her favorite - birthday pancakes, and drove her to school. I spent the rest of the day and evening at the hospital. Hannah got to go to her BFF's house for a sleepover - ON A SCHOOL NIGHT - and they made her a birthday cake and the girls stayed up late just being girls. It was the distraction that she needed. But today as she got off the bus after school, she was crying. Her Grams picked her up at the bus stop, and she was confused about which bus she was riding and which stop she was getting off. She hadn't seen her Dad since Monday morning, and me since Tuesday morning, and she obviously knew her baby sister was in the hospital. So, this has taken a toll on Hannah as well.
I promised pictures...
At this point, the Pediatric Orthopedic Surgeon had decided not to wait for the antibiotics to make an effect and they pretty much rushed her to surgery.
After her surgery, Matt and I went in to see her post-op. We were told under no uncertain terms that she almost didn't make it. Not because of the surgery itself, or any complications from her infection, but because her asthma flared up and they couldn't get her breathing under control.
Today, she had her second surgery to explore the tissue and muscle that was infected. They didn't promise that they could stitch her up, just that they were going to take a look and hopefully find improvement. While waiting for the anesthesiologist, we were told additional details about her first surgery and the complications she had while coming out of anesthesia. We had forgotten that she drank a slushy about an hour before her surgery. It was doctor ordered... we didn't anticipate surgery at that point and didn't see a thing wrong with it. When she was taken back for surgery it was, we were also later told, a "life or limb" situation, so VERY much an emergency. Well, while being extubated, she threw up, but aspirated (breathed in her vomit) and it got in her lungs. Thus, causing her to go into major trauma. They almost couldn't get her back from that.
It was another 24 hours before we saw any kind of a smile. It was the balloons and stuffed animals that did it.
And this was the difference between day 2 and today (day 3) after surgery:
This was Ava straight out of her second surgery - before she even returned to her room. WHAT A DIFFERENCE!!
So, today we are doing much better! She's eating, she's drinking, she's talking and interacting, she's bossy, she's REALLY crabby and a little mean (an understatement, but wouldn't you be? I know I would), and every minute that goes by I start to see a little glimpse of my Ava Gracie... My sweet, sweet Ava Gracie. She hasn't been bathed since Sunday (she won't let anyone near her with a sponge or water), the rat's nest (another understatement) of hair she has on her head makes me wonder if we'll have to shave it before we ever get it straight again... but I'll take it. I'll take it all. I am thankful for the scars on her leg that will always remind us of this week (they're very minimal - we had a very talented surgeon), I'm thankful for the hours I'll spend untangling her hair, I'm thankful for the make-up tooth brushings we'll have to do, and the extra long bath she'll take when she can. I'm thankful for the grumpiness and the yelling and impatience. I would give anything, DO anything for either one of my kids. And getting through it would make us all stronger and that much more able to handle life as it comes.
I am so thankful for the outpouring of support, love, prayers, gifts for Ava, offers to help with the kids, bringing me or any family member a hot meal, help with Hannah - you name it, it's been offered. Words cannot express our gratitude and humility toward everyone that has offered to help. It's humbling... to say the least.
I barely proofread this, I just wanted to get it out. It feels so good to write again - unfortunately it took this trauma for me to make the time. I apologize for the misspellings and jumping from day to day, and situation to situation - it's not my norm, but I'm deliriously tired, and don't really care. You guys are smart and you can put 2 and 2 together to get the picture! I basically wanted to get more details out - since this is so bizarre, yet intriguing.
Thank you again for your continued prayers. We aren't out of the woods yet, but I'm hoping the trail is getting more clear. She's a fighter - and so are we. And we have the power of prayer on our side. Thank you, thank you, thank you.
Till next time...
No More IV! THIS miraculous event happened on accident... her IV blew out again, and instead of putting her through the trauma of trying to find a good vein, we asked the Powers That Be if we could do medication orally from now on and behold! They said YES! One less point of misery for my baby, and one small step closer to going home! After the trauma of last night and blowing out three veins while trying to find a good one, this is MUCH welcomed news!
Big sister Hannah came up to see Ava today and that did both girls good. Ava sure did cry when she left though. They have missed each other, and Hannah has been a little confused as well with everything going on.
Still no lab results - either from the blood or the biopsy they took. We were told that since she started receiving antibiotics so soon in the ER, the blood and tissue samples would already have been tainted by those antibiotics. Each day that goes by without an answer is hard - and fills the future with a bit of fear that this may happen again. But with faith, we try to cling to the chance that this was a freak thing.
She is SO crabby! And it's hard to see her so crabby, when I know that any other time she is awake, she is FULL of joy. She goes from yelling at people to move out of her way because she can't see the TV, to telling us all to stop talking because she can't hear her movie (Tangled - for the 15th time today), to telling whoever is closest that they have stinky breath. I made the monumental mistake of asking her ever so nicely to try to be a little nicer to people, and that just made her cry! She can't help it... she's grumpy! She's been through so much in the last 3 days! Immediately after one of her lash-outs, she either falls asleep or has one of her many-a-day meltdowns about wanting to go home. She misses home. My heart aches for her. Aches. Literally. Watching in pure helplessness as my baby girl is poked and prodded, she doesn't feel good, she doesn't understand, and she can't go home. It's torture for me... and worse for her.
I haven't been alone with her yet... which is good I guess - we are blessed to be surrounded by so many friends and family. But I want to be alone with her. I want to feel like her Mommy. Tonight is my night to stay overnight at the hospital. The rest of the week has been split up between her daddy, her Bumpa (overnights) and the visitors we've had during the day. I am truly in awe by how Matt's and my friends and families have come together to not only be here for Ava, but also for Hannah. Hannah's 7th birthday was yesterday. I stayed home that morning, made her favorite - birthday pancakes, and drove her to school. I spent the rest of the day and evening at the hospital. Hannah got to go to her BFF's house for a sleepover - ON A SCHOOL NIGHT - and they made her a birthday cake and the girls stayed up late just being girls. It was the distraction that she needed. But today as she got off the bus after school, she was crying. Her Grams picked her up at the bus stop, and she was confused about which bus she was riding and which stop she was getting off. She hadn't seen her Dad since Monday morning, and me since Tuesday morning, and she obviously knew her baby sister was in the hospital. So, this has taken a toll on Hannah as well.
I promised pictures...
This is what her leg looked like at 11:30 AM when Matt decided to take her in to Urgent Care (her ankle is on the left of the picture)
By 1:00pm, shortly after we arrived at DeVos, her leg had worsened to this. They drew around the area with a magic marker to watch it grow.
And within 2 hours of that, they had decided to admit her.
Around 4:00, this is what her leg looked like:
And it was moving up into her groin area. You can see the
redness moving up her leg, outside of the marked area, and
onto her knee.
After her surgery, Matt and I went in to see her post-op. We were told under no uncertain terms that she almost didn't make it. Not because of the surgery itself, or any complications from her infection, but because her asthma flared up and they couldn't get her breathing under control.
Today, she had her second surgery to explore the tissue and muscle that was infected. They didn't promise that they could stitch her up, just that they were going to take a look and hopefully find improvement. While waiting for the anesthesiologist, we were told additional details about her first surgery and the complications she had while coming out of anesthesia. We had forgotten that she drank a slushy about an hour before her surgery. It was doctor ordered... we didn't anticipate surgery at that point and didn't see a thing wrong with it. When she was taken back for surgery it was, we were also later told, a "life or limb" situation, so VERY much an emergency. Well, while being extubated, she threw up, but aspirated (breathed in her vomit) and it got in her lungs. Thus, causing her to go into major trauma. They almost couldn't get her back from that.
It was another 24 hours before we saw any kind of a smile. It was the balloons and stuffed animals that did it.
And this was the difference between day 2 and today (day 3) after surgery:
So, today we are doing much better! She's eating, she's drinking, she's talking and interacting, she's bossy, she's REALLY crabby and a little mean (an understatement, but wouldn't you be? I know I would), and every minute that goes by I start to see a little glimpse of my Ava Gracie... My sweet, sweet Ava Gracie. She hasn't been bathed since Sunday (she won't let anyone near her with a sponge or water), the rat's nest (another understatement) of hair she has on her head makes me wonder if we'll have to shave it before we ever get it straight again... but I'll take it. I'll take it all. I am thankful for the scars on her leg that will always remind us of this week (they're very minimal - we had a very talented surgeon), I'm thankful for the hours I'll spend untangling her hair, I'm thankful for the make-up tooth brushings we'll have to do, and the extra long bath she'll take when she can. I'm thankful for the grumpiness and the yelling and impatience. I would give anything, DO anything for either one of my kids. And getting through it would make us all stronger and that much more able to handle life as it comes.
I am so thankful for the outpouring of support, love, prayers, gifts for Ava, offers to help with the kids, bringing me or any family member a hot meal, help with Hannah - you name it, it's been offered. Words cannot express our gratitude and humility toward everyone that has offered to help. It's humbling... to say the least.
I barely proofread this, I just wanted to get it out. It feels so good to write again - unfortunately it took this trauma for me to make the time. I apologize for the misspellings and jumping from day to day, and situation to situation - it's not my norm, but I'm deliriously tired, and don't really care. You guys are smart and you can put 2 and 2 together to get the picture! I basically wanted to get more details out - since this is so bizarre, yet intriguing.
Thank you again for your continued prayers. We aren't out of the woods yet, but I'm hoping the trail is getting more clear. She's a fighter - and so are we. And we have the power of prayer on our side. Thank you, thank you, thank you.
Till next time...
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