Things are getting quite busy around here.
Lucy's surgery is next week. We are expected to remain inpatient for about a week, so I need to tie up loose ends here at home- errands, bills, laundry, cleaning, cooking and freezing. We had a pre-op exam on Wednesday and I am trying to get Zachary wrapped up with school so he can take a break while Lu recovers. And did I mention Big Zach starts school next week too? Whew!
Lucy's dance recital is this weekend so we've had rehearsal, photos, and then some more rehearsal. I will be glad when its over! Lucy loves ballet though. She takes herself very seriously when it comes to dance. She never wants to miss a class and let down her teacher.
I have definitely been too wrapped up in all the things to do around here to really sit down and let it hit me that this time next week my brave girl will be back in a hospital bed. I don't doubt that it will hit me at some point in the next few days though!
As always, thank you so much for checking in!
Thursday, May 31, 2012
Thursday, May 24, 2012
Getaway
We spent all of last week in Florida with Big Zach's family, touring Disney, Universal Studios, and Sea World. The kids had a LOT of new experiences that were just amazing- petting dolphins, riding rollercoasters, a plane ride, meeting their heroes, traveling so far from home. It was a trip they'll never forget.
We originally started planning this trip because it seemed like things had become stable enough that it was the optimal time. As it turned out it was the best time because life had taken a chaotic turn. It felt so good to escape life for a week- to just enjoy ourselves and forget about all the hardships going on at home, to forget the feelings of doubt, fear, shame, and anger.
The trip was exactly what we needed, when we needed it.
As you may have figured out, Lu's tube replacement went fine on the Friday before we left. We waited around all day and she slept while trying to remain patient. We finally got taken back and she was out before I blinked. We got her hooked up to her drainage bag and a pump full of pedialyte. Then we were on our way home shortly after dinnertime. After that, its all a blur of excitedly packing while the kids slept!
This week is just playing catchup after checking out last week. School, activities, therapy, preparing for surgery in just 2 weeks. Busy!!
Tuesday, May 8, 2012
Crazy Week
Today Lucy had her first appointment at the new children's hospital with her new psychologist.
The facility is great, much better than before. The waiting room was bright and clean. The room we had our appointment in was spacious, as compared to the closet she used to have her appointments in. Other than a parking snafu that forced us to walk a couple miles, I can't complain.
I think I like the new psychologist. She was enthusiastic and assertive. Which is a combination Lucy needs. She also seemed focused on helping Lucy gain independence emotionally.
Right now Lu struggles with grief over her situation on a daily basis. She can range from sadness to rage, and this goes on just about everyday. We do our best to validate her feelings and let her know she is being heard. But its difficult for her to identify her feelings and find better ways to express them at this age. The psychologist wants to spend some time working one on one with Lu to help her learn to identify her emotions and ways she can cope.
This Friday Lu has a tube replacement scheduled.
Her g-port has been giving us a hard time with draining, which is not helped by the fact Lucy has been stealing again. She got a hold of a chocolate cookie last week and it took over 24 hours to leave her stomach. So when the food is combined with a malfunctioning tube, Lu can't be vented and she ends up throwing up in her mouth and just overall feeling very uncomfortable and bloated. Her stomach has become so slow that draining as much as is possible is essential to keep her comfortable.
Friday will just be a simple replacement, which still involves sedation. We should be in and out within a few hours time...I hope! Once she has the Roux en Y procedure, we wont have to keep going through this replacement circus act. But for now, we will deal and just pray for a complication free replacement this one last time.
The facility is great, much better than before. The waiting room was bright and clean. The room we had our appointment in was spacious, as compared to the closet she used to have her appointments in. Other than a parking snafu that forced us to walk a couple miles, I can't complain.
I think I like the new psychologist. She was enthusiastic and assertive. Which is a combination Lucy needs. She also seemed focused on helping Lucy gain independence emotionally.
Right now Lu struggles with grief over her situation on a daily basis. She can range from sadness to rage, and this goes on just about everyday. We do our best to validate her feelings and let her know she is being heard. But its difficult for her to identify her feelings and find better ways to express them at this age. The psychologist wants to spend some time working one on one with Lu to help her learn to identify her emotions and ways she can cope.
This Friday Lu has a tube replacement scheduled.
Her g-port has been giving us a hard time with draining, which is not helped by the fact Lucy has been stealing again. She got a hold of a chocolate cookie last week and it took over 24 hours to leave her stomach. So when the food is combined with a malfunctioning tube, Lu can't be vented and she ends up throwing up in her mouth and just overall feeling very uncomfortable and bloated. Her stomach has become so slow that draining as much as is possible is essential to keep her comfortable.
Friday will just be a simple replacement, which still involves sedation. We should be in and out within a few hours time...I hope! Once she has the Roux en Y procedure, we wont have to keep going through this replacement circus act. But for now, we will deal and just pray for a complication free replacement this one last time.
Thursday, May 3, 2012
Changes
It has been a long long time, I know. Life has kept us busy.
We had high hopes that this year would be our best yet. Things were really coming together health wise for Lucy, financially for our family, and career wise for my husband. We kicked off the new year looking for a house, hoping to get closer to friends and family. We planned a big vacation with our family. We really thought things had stabilized in our lives and we were back on track.
But, God certainly had other plans in store for us.
Suddenly, after nearly 10 years at his company, my husband's job was in jeopardy due to company layoffs. Thankfully, he still had a job, but the position he held was eliminated. Things hung in the balance for a while, leaving us terrified, but once we knew his job was stable, we were able to accept the change. We were not happy about it, but when so many of his coworkers were laid off, we could only be grateful that he could still bring home a steady paycheck.
Just when we felt relief and began looking for a house once again, we got more dreadful news.
Suddenly, after over 2 years of formula coverage, our claim for Lucy's monthly shipment was denied. I won't lie, it was sheer panic on our part at that point. Lucy cannot survive without her formula, and the cost per month is at a catastrophic expense. We contacted everyone we could, did everything we could, argued every point that could be made. Lucy's GI even wrote a letter warning our insurance company that she would require hospitalization for TPN (nutrition through a central line, IV) or that even death would result.
We sought help from the state Attorney General's Office and through all of our arguing, debating, and compiling information, we discovered that we do not have coverage for formula in our policy at all. Our policy specifically excludes coverage unless its for a metabolic disease. It seems the only reason we received it earlier this year was due to a coding error.
At this point, we unfortunately are stuck with the monthly expense of Lucy's formula on our own. The cost is astronomical- I just charged a month's worth to our card yesterday and the total came to over 800$. Add in the copays, deductibles, and other out of pocket expenses for her doctor appointments, procedures, tests, and surgeries. The expense quickly can total near 1400$. Based on our medical deductions from last year, we can estimate that our out of pocket expenses for this year may total close to 19,000$.
This is crippling. We have no idea how we will make this work but we will have to. We will have to find a way. A door will open somewhere. God will provide for us somehow.
There are even more changes ahead for us this year.
Lucy is scheduled for a major surgery June 6th. She will have a Roux en Y procedure in order to make feeding through her small intestine easier on her. The procedure will basically construct an arm out of her intestine that comes up to the surface so that a J-button can be placed at the skin. At the end of the procedure she will have a separate G-tube for draining her stomach and a separate J-tube for feeding- sometimes referred to as "Tubies Squared".
This procedure will eliminate the need for Lucy to undergo sedation to have her GJ replaced every +/-3 months (this greatly reduces the risks associated with frequent sedation and regular exposure to radiation over her lifetime). It will also make it easier for us to continuously drain her stomach, which has been an issue with GJ tube. Her new tubes will be replaced by me at home, just like replacing an earring. It really makes tube feeding much easier on us in the long run.
This is a huge surgery though. Her internal anatomy is permanently altered. Doctors don't often recommend this procedure because its a difficult one, but both Lucy's surgeon and GI feel she is an excellent candidate. Typically, this surgery is only recommended when doctors are not expecting a patient to come off of tube feeds anytime in the foreseeable future. Overall, they believe its the best way to help Lucy remain stable, comfortable, and happy for the long haul.
So, it has so far been a stressful year that doesn't seem interested in letting up. Its been a lot to handle. We are uncertain what is up ahead, but we are trusting there is a plan in store for us. Lucy is growing and thriving. We still have a roof over our heads. We're still together and holding strong. There are things to be grateful for everyday, even if we have to squint a little bit some days to see them.
Thank you for staying with us this long! It was a lot to catch up on!
Erin
We had high hopes that this year would be our best yet. Things were really coming together health wise for Lucy, financially for our family, and career wise for my husband. We kicked off the new year looking for a house, hoping to get closer to friends and family. We planned a big vacation with our family. We really thought things had stabilized in our lives and we were back on track.
But, God certainly had other plans in store for us.
Suddenly, after nearly 10 years at his company, my husband's job was in jeopardy due to company layoffs. Thankfully, he still had a job, but the position he held was eliminated. Things hung in the balance for a while, leaving us terrified, but once we knew his job was stable, we were able to accept the change. We were not happy about it, but when so many of his coworkers were laid off, we could only be grateful that he could still bring home a steady paycheck.
Just when we felt relief and began looking for a house once again, we got more dreadful news.
Suddenly, after over 2 years of formula coverage, our claim for Lucy's monthly shipment was denied. I won't lie, it was sheer panic on our part at that point. Lucy cannot survive without her formula, and the cost per month is at a catastrophic expense. We contacted everyone we could, did everything we could, argued every point that could be made. Lucy's GI even wrote a letter warning our insurance company that she would require hospitalization for TPN (nutrition through a central line, IV) or that even death would result.
We sought help from the state Attorney General's Office and through all of our arguing, debating, and compiling information, we discovered that we do not have coverage for formula in our policy at all. Our policy specifically excludes coverage unless its for a metabolic disease. It seems the only reason we received it earlier this year was due to a coding error.
At this point, we unfortunately are stuck with the monthly expense of Lucy's formula on our own. The cost is astronomical- I just charged a month's worth to our card yesterday and the total came to over 800$. Add in the copays, deductibles, and other out of pocket expenses for her doctor appointments, procedures, tests, and surgeries. The expense quickly can total near 1400$. Based on our medical deductions from last year, we can estimate that our out of pocket expenses for this year may total close to 19,000$.
This is crippling. We have no idea how we will make this work but we will have to. We will have to find a way. A door will open somewhere. God will provide for us somehow.
There are even more changes ahead for us this year.
Lucy is scheduled for a major surgery June 6th. She will have a Roux en Y procedure in order to make feeding through her small intestine easier on her. The procedure will basically construct an arm out of her intestine that comes up to the surface so that a J-button can be placed at the skin. At the end of the procedure she will have a separate G-tube for draining her stomach and a separate J-tube for feeding- sometimes referred to as "Tubies Squared".
This procedure will eliminate the need for Lucy to undergo sedation to have her GJ replaced every +/-3 months (this greatly reduces the risks associated with frequent sedation and regular exposure to radiation over her lifetime). It will also make it easier for us to continuously drain her stomach, which has been an issue with GJ tube. Her new tubes will be replaced by me at home, just like replacing an earring. It really makes tube feeding much easier on us in the long run.
This is a huge surgery though. Her internal anatomy is permanently altered. Doctors don't often recommend this procedure because its a difficult one, but both Lucy's surgeon and GI feel she is an excellent candidate. Typically, this surgery is only recommended when doctors are not expecting a patient to come off of tube feeds anytime in the foreseeable future. Overall, they believe its the best way to help Lucy remain stable, comfortable, and happy for the long haul.
So, it has so far been a stressful year that doesn't seem interested in letting up. Its been a lot to handle. We are uncertain what is up ahead, but we are trusting there is a plan in store for us. Lucy is growing and thriving. We still have a roof over our heads. We're still together and holding strong. There are things to be grateful for everyday, even if we have to squint a little bit some days to see them.
Thank you for staying with us this long! It was a lot to catch up on!
Erin
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