This is what makes me happy!
Wednesday, March 30, 2011
Good news travels fast.
Got the call yesterday from the Craniofacial rep at Ochsner's Children's Hospital. Bodie got an appointment with the Craniofacial team. These are the Doctors that will do his reconstructive surgery on his mouth & jaw. He has an appointment the second week of April. We are thrilled at this good news!
Today he had his Pediatrician visit & got his last RSV immunization. He got a good report from the Pediatrician, Dr Harper. He's up to 11.5 pounds now. Great news!
Lastly, the Home Health people delivered Bodie's much needed supplies, and I am going to give them one last chance to prove them selves a reputable Company.
RH
Today he had his Pediatrician visit & got his last RSV immunization. He got a good report from the Pediatrician, Dr Harper. He's up to 11.5 pounds now. Great news!
Lastly, the Home Health people delivered Bodie's much needed supplies, and I am going to give them one last chance to prove them selves a reputable Company.
RH
Tuesday, March 29, 2011
The joys of Home Health...
Home Health. What is it?
A Company who provides medical supplies for home use. In our case it's Grace Health Care of Gulfport.
They bring the suction machines, medical supplies, sterile equipment that we need to provide for Bodie's needs.
They charge the supplies to: our Insurance,(now cancelled) or Medicaid.
We only use what we need & we re-use the things we can wash, for example: feeding syringes, electrode monitor connections, etc. The stuff we can't re-use is used once & then thrown away, for example: suction catheters, Mepilex, (trach dressing) trach cleaning supplies, etc.
Apparently, there is a limit set by some bean counter in some office who knows nothing about taking care of a special needs child. How do I know this? Because Bodie is over his "limit" according to the Home Heath care Company. I'm waiting to see this list...
So when we went over this month & Medicaid told our Home Health Company they wouldn't pay for the supplies, what did they do...? Just quit delivering to us.
After three hours on the phone this morning I THINK I have this issue resolved.
We shall see.
RH
A Company who provides medical supplies for home use. In our case it's Grace Health Care of Gulfport.
They bring the suction machines, medical supplies, sterile equipment that we need to provide for Bodie's needs.
They charge the supplies to: our Insurance,(now cancelled) or Medicaid.
We only use what we need & we re-use the things we can wash, for example: feeding syringes, electrode monitor connections, etc. The stuff we can't re-use is used once & then thrown away, for example: suction catheters, Mepilex, (trach dressing) trach cleaning supplies, etc.
Apparently, there is a limit set by some bean counter in some office who knows nothing about taking care of a special needs child. How do I know this? Because Bodie is over his "limit" according to the Home Heath care Company. I'm waiting to see this list...
So when we went over this month & Medicaid told our Home Health Company they wouldn't pay for the supplies, what did they do...? Just quit delivering to us.
After three hours on the phone this morning I THINK I have this issue resolved.
We shall see.
RH
Monday, March 28, 2011
When in doubt... panic.
You know the feeling. You leave home & just know you left the coffee pot or the stove on, or did you forget to bring something? Now which was it?
Both of those pale in comparison to the feeling I had today when we parked the car in New Orleans (two hours from home) at the Doctor's office and realized that I had forgotten to bring Bodie's portable suction machine.
Without this machine, he get secretions built up in his trach (airway) and cannot breathe. The machine is how we suction these secretions clear.
So here we sit & I am in full blown, stark raving panic mode. What the hell am I going to use to clear his airway if there is an obstruction? After Brandi manages to calm me down I figure I can suction him with a suction catheter & my mouth if necessary. (In reality-that isn't going to work).
But my next idea had promise... (more on that in a minute)
We went on with our appointment & Bodie did not need to be suctioned a single time, thank God!
Here's my idea that did work... I know, because I tested it at home later. I attached a suction catheter to a feeding syringe & created a vacuum (suction) by pulling the plunger back while holding my finger over the open suction catheter port. I was able to draw 25ml of water up the catheter into the syringe my first try.
But I don't think I'll EVER leave the portable suction at home again.
Ever.
Both of those pale in comparison to the feeling I had today when we parked the car in New Orleans (two hours from home) at the Doctor's office and realized that I had forgotten to bring Bodie's portable suction machine.
Without this machine, he get secretions built up in his trach (airway) and cannot breathe. The machine is how we suction these secretions clear.
So here we sit & I am in full blown, stark raving panic mode. What the hell am I going to use to clear his airway if there is an obstruction? After Brandi manages to calm me down I figure I can suction him with a suction catheter & my mouth if necessary. (In reality-that isn't going to work).
But my next idea had promise... (more on that in a minute)
We went on with our appointment & Bodie did not need to be suctioned a single time, thank God!
But I don't think I'll EVER leave the portable suction at home again.
Ever.
Sunday, March 27, 2011
Heading to Genetics tomorrow...
Tomorrow we go to see Dr. Niazov in new Orleans. He's the Geneticist that we hope will tell us that Bodie does not have Muscular Dystrophy. I know he can't tell us this tomorrow, but I like to hope.
He'll first have to do a muscle biopsy on Bodie's leg muscle & then test the tissue to know for sure.
So, I really don't know what to expect of our visit tomorrow except one thing... That my Insurance won't be paying for the visit, and to add yet another bill to the unpaid stack. Did I forget to mention "thanks" to Select Administrative Services"? Oops, must have slipped my mind.
RH
UPDATE- The appt went much better than expected! Based on his progress the Geneticist has ruled out any severe muscular myopothy. He still wants to do the biopsy, but Bodie either won't have any problems or it will be a mild case. Chances are good that he will be able to live a pretty normal life. Music to our ears!!! There was also alot of jabber about increased feedings and growth hormones. Poor kid has either been starved or forced full of food since the day he was born!
More good news, He also wants to get Bodie in to see the Cranio Facial people and Plastic Surgeon next month. It seemed like he wanted to do the surgery sooner rather than later, which is fine by us, I can't wait to get that detestable trach out!!! He also talked about the jaw lengthening procedure, which may have to be done at the same time so the tongue can fit in his mouth and come out of his airway.
The only problem we have now is having to depend soley on Medicaid since the insurance dropped him for maxing out his lifetime benefits. Mississippi has a Medicaid program called MississippiCan, which should be called WeScrewYou! Apparently, there are Many Many things that are not in the list of providers! Like our Home Health Care, who is also not intersted in helping anyone. We can't switch Home Health Care providers though because they are the only ones who have pediatric trach supplies. Soooo.....Grace Healthcare is not covered by MississippiCan nor do we want to deal with them anymore because of the unprofessionalism (not showing up, not calling) but we are still stuck with them. All we can do is try to opt out of MississippiCan in the 2 days we have left to opt out or we are stuck with them for the next year! They may not let us opt out, and we don't even know what exactly is going to happen if they do. We're banking on him going back on regular Medicaid, but we'll see! Does your head hurt yet......mine does!
Brandi
He'll first have to do a muscle biopsy on Bodie's leg muscle & then test the tissue to know for sure.
So, I really don't know what to expect of our visit tomorrow except one thing... That my Insurance won't be paying for the visit, and to add yet another bill to the unpaid stack. Did I forget to mention "thanks" to Select Administrative Services"? Oops, must have slipped my mind.
RH
UPDATE- The appt went much better than expected! Based on his progress the Geneticist has ruled out any severe muscular myopothy. He still wants to do the biopsy, but Bodie either won't have any problems or it will be a mild case. Chances are good that he will be able to live a pretty normal life. Music to our ears!!! There was also alot of jabber about increased feedings and growth hormones. Poor kid has either been starved or forced full of food since the day he was born!
More good news, He also wants to get Bodie in to see the Cranio Facial people and Plastic Surgeon next month. It seemed like he wanted to do the surgery sooner rather than later, which is fine by us, I can't wait to get that detestable trach out!!! He also talked about the jaw lengthening procedure, which may have to be done at the same time so the tongue can fit in his mouth and come out of his airway.
The only problem we have now is having to depend soley on Medicaid since the insurance dropped him for maxing out his lifetime benefits. Mississippi has a Medicaid program called MississippiCan, which should be called WeScrewYou! Apparently, there are Many Many things that are not in the list of providers! Like our Home Health Care, who is also not intersted in helping anyone. We can't switch Home Health Care providers though because they are the only ones who have pediatric trach supplies. Soooo.....Grace Healthcare is not covered by MississippiCan nor do we want to deal with them anymore because of the unprofessionalism (not showing up, not calling) but we are still stuck with them. All we can do is try to opt out of MississippiCan in the 2 days we have left to opt out or we are stuck with them for the next year! They may not let us opt out, and we don't even know what exactly is going to happen if they do. We're banking on him going back on regular Medicaid, but we'll see! Does your head hurt yet......mine does!
Brandi
On the Road to Going Home
Right after Christmas they finally started talking about going home. I had alot of mixed feelings about that, I wanted him home so I could Finally bond with him and give him all the attention that he needed, but I was SO SCARED. Scared that I wouldn't be able to take care of him, scared that the huge amount of responsibility would be more than I could handle, mostly just scared of all the unknowns. The Doctors wanted him off the vent before they sent him home, so they started weaning him and he did great, within a few weeks he breathing on his own! The hospital set about making plans, getting things straight, and started training us on the ins & outs of a special needs baby. We were taking CPR classes, memorizing his supplies, practicing cleaning the trach & g-tube, suctioning the trach, changing the trach (the scariest part for me).
By the end, my confidence had improved. At 5 months 1 week old, Bodie finally left the hospital. He is alot more work than a regular baby, but since he's a NICU baby, he doen't demand attention like a normal baby. So I think it evens out. He is the absolute sweetest thing, his smile lights up the room. We were home for a week, started getting into a routine, finally getting to use all the baby stuff that had gone unused for so many months, then he started to deteriorate. Constant dry cough, Low Sats, Unhappy and Sleeping constantly. We ended up in the ER 10 days after he came home. Within 24 hours he was being transported back to Ochsners. They think he caught some sort of virus, he was in the PICU for a week. They sedated him and used a paralytic so they could put him back on the vent. He was fighting the vent and they didn't want him to blow out a lung. Pretty scary stuff! He was well enough to go home after 2 weeks but we got to add a few more machines to our arsenal, Humidified air & breathing treatments. They seem to be working though because he's been home again for about 2 months with no major problems.
-Brandi
By the end, my confidence had improved. At 5 months 1 week old, Bodie finally left the hospital. He is alot more work than a regular baby, but since he's a NICU baby, he doen't demand attention like a normal baby. So I think it evens out. He is the absolute sweetest thing, his smile lights up the room. We were home for a week, started getting into a routine, finally getting to use all the baby stuff that had gone unused for so many months, then he started to deteriorate. Constant dry cough, Low Sats, Unhappy and Sleeping constantly. We ended up in the ER 10 days after he came home. Within 24 hours he was being transported back to Ochsners. They think he caught some sort of virus, he was in the PICU for a week. They sedated him and used a paralytic so they could put him back on the vent. He was fighting the vent and they didn't want him to blow out a lung. Pretty scary stuff! He was well enough to go home after 2 weeks but we got to add a few more machines to our arsenal, Humidified air & breathing treatments. They seem to be working though because he's been home again for about 2 months with no major problems.
-Brandi
Bodie's First Days
I won't bore you all with the details of how much pain I was in (HORRIBLE) but it was actually a welcome distraction from what was really going on. It took me a few days to be able to get out of bed and go see him. I was scared to see him, I knew if I saw him, that meant that this whole thing was actually real. He was beyond tiny, only weighing in at 1 lb 6 oz and had so many tubes & things on him that I could barely see what he looked like. 
I don't recall who told me about the Pierre Robin Sequence or that he did not have Dwarfism, but I know I was told. All that mattered to me was hearing that Pierre Robin is fixable, and that was good news. Other than the PRS, he didn't appear to have anything else wrong with him. PRS consists of Cleft Palate, Underdeveloped chin & lower jaw, and the tongue is too big to fit in the mouth and stays in the airway, making breathing and eating extremely difficult. Of course it was something we had never heard of before. I'm not gonna lie, the inside of Bodie's mouth is a scary sight. Now that we've done lots of research we know that PRS does affect you in some way for the rest of your life (most commonly-hearing problems, teeth problems, speech problems). It is also usually associated with another Disorder. While in the NICU Bodie tested negative for everything but Muscular Disorders (dystrophy, myopathy), he will require a Muscle Biopsy in the near future to rule it out. He will also need surgey to repair the cleft, usually done between 1 & 2 years of age. I know there is a jaw lengthening procedure but the Dr's haven't talked to us about that, we are still trying to find info about it.
Back to the story...He was born at Memorial Hospital in Gulfport, MS and he gave them quite a run for their money as soon as he came out. They had to call someone from Ochsners Hospital in New Orleans LA to come and intubate him, because of his tiny size and blocked airway, they were having no luck. It horrifies me to think what Bodie must have went through in his first hours and what a terrible welcome into the world! A week later we all decided that Memorial was not quite equipped to handle an infant with such special needs and he was transfered to Ochsners.
Wade seeing his brother for the first time during the transfer.
Ochsners was a grueling 2 hour drive there and 2 hour drive back from our house, but we wanted him to have the best care possible. First impression of the NICU was good, the age cutoff for siblings was 3 so Wade could go in, which we were happy about and it seemed more lively and happy than the small Gulfport NICU. He was there for about a week when the Doctors decided he would benefit from a Tracheostomy. SAY WHAT??? What's the only thing worse than being told someone is going to cut a hole in your baby's throat? Actually seeing a 1 1/2 pound baby with a tube sticking out of their throat that is bigger than they are! Again with the Sobbing!
As much as I hated it, he did seem to come alive after that. He started opening his eyes and interacting. The next few months were a blur, we were basically holding our breath, waiting around for what other horrible thing awaited us. But nothing else really happened. He slowly but surely gained weight and improved. He had a wonderful Primary Care Nurse, Corinne, who really bonded with him and fought her heart out to get him better and make sure he had the best of everything! I still remember the best thing she ever said to me, he had been there about 2 months and she was bragging on how smart he was and said there was nothing wrong with his brain.I probably started crying, I'm surprised I didn't fall down & kiss the ground! That was my worst fear! I couldn't imagine he could have survived such a miserable existence in my womb and near suffocation when he was born and not have any brain damage. That's when the wall I had built up around my heart started to crumble. The wall I built to try to protect myself if something really bad happened or he didn't make it. And that's when hope started to creep in.
He was about 4 months old when they told us they wanted to put a feeding tube in his stomach because his reflux was a big problem with the trach. Another crappy surgery, the scars are adding up, but whatever is best for him.
-Brandi
I don't recall who told me about the Pierre Robin Sequence or that he did not have Dwarfism, but I know I was told. All that mattered to me was hearing that Pierre Robin is fixable, and that was good news. Other than the PRS, he didn't appear to have anything else wrong with him. PRS consists of Cleft Palate, Underdeveloped chin & lower jaw, and the tongue is too big to fit in the mouth and stays in the airway, making breathing and eating extremely difficult. Of course it was something we had never heard of before. I'm not gonna lie, the inside of Bodie's mouth is a scary sight. Now that we've done lots of research we know that PRS does affect you in some way for the rest of your life (most commonly-hearing problems, teeth problems, speech problems). It is also usually associated with another Disorder. While in the NICU Bodie tested negative for everything but Muscular Disorders (dystrophy, myopathy), he will require a Muscle Biopsy in the near future to rule it out. He will also need surgey to repair the cleft, usually done between 1 & 2 years of age. I know there is a jaw lengthening procedure but the Dr's haven't talked to us about that, we are still trying to find info about it.
Wade seeing his brother for the first time during the transfer.
Ochsners was a grueling 2 hour drive there and 2 hour drive back from our house, but we wanted him to have the best care possible. First impression of the NICU was good, the age cutoff for siblings was 3 so Wade could go in, which we were happy about and it seemed more lively and happy than the small Gulfport NICU. He was there for about a week when the Doctors decided he would benefit from a Tracheostomy. SAY WHAT??? What's the only thing worse than being told someone is going to cut a hole in your baby's throat? Actually seeing a 1 1/2 pound baby with a tube sticking out of their throat that is bigger than they are! Again with the Sobbing!
As much as I hated it, he did seem to come alive after that. He started opening his eyes and interacting. The next few months were a blur, we were basically holding our breath, waiting around for what other horrible thing awaited us. But nothing else really happened. He slowly but surely gained weight and improved. He had a wonderful Primary Care Nurse, Corinne, who really bonded with him and fought her heart out to get him better and make sure he had the best of everything! I still remember the best thing she ever said to me, he had been there about 2 months and she was bragging on how smart he was and said there was nothing wrong with his brain.I probably started crying, I'm surprised I didn't fall down & kiss the ground! That was my worst fear! I couldn't imagine he could have survived such a miserable existence in my womb and near suffocation when he was born and not have any brain damage. That's when the wall I had built up around my heart started to crumble. The wall I built to try to protect myself if something really bad happened or he didn't make it. And that's when hope started to creep in.
He was about 4 months old when they told us they wanted to put a feeding tube in his stomach because his reflux was a big problem with the trach. Another crappy surgery, the scars are adding up, but whatever is best for him.
-Brandi
The Pregnancy
We decided to have another baby around the time Wade was a year old. We tried for a while before we got the good news in February 2010 that Brandi was pregnant.
Bodie's due date was October 15th, the same day as Wade's third birthday!
Everything seems fine until the 5th month when we went to find out the sex of the baby. The Doctor told us that it was a boy but that he was measuring a little small. We didn't think anything of it because Wade had been a week & a half late and only weighed 6 lb 1 oz. Nevertheless, we were referred to an Ultrasound Specialist. Going in there, we were not worried, fully expecting her to say the baby was fine, just a little small. We were wrong. She said the leg bones were much shorter than they should be, indicating Down's Syndrome or Dwarfism. Shock, Fear and Heartbreak overtook us. It took a while to calm down and stop sobbing, then we agreed to an Amniocentesis, which would tell us if he had Down's Syndrome but could not test for Dwarfism. If he tested posotive for Down's, we would then need to decide if we wanted to terminate.
This horrible day happened 5 days before we were leaving to go to Myrtle Beach SC for our yearly vacation. We spent a week on a beautiful beach pretending to have fun, all the while trying to figure out if we had it in us to care for a brain damaged child (and probably adult) or if we had it in us to terminate a pregnancy in the 5th, almost 6th month. It was agony, we cried ourselves to sleep every night.
Luckily, after 2 weeks of waiting, he tested negative for Down's. She said odds were that it was Dwarfism, but there was really no way to know what kind of dwarfism. At that point we had already commited ourselves to having the baby and dealing with whatever came our way. She scheduled another appt. for the next month.
2nd appointment with the Ultrasound Specialist- We were desperatly hoping to go in there and be told everything looked normal now, no more worries! Wrong again. Although I knew something was indeed wrong because I wasn't showing much and the baby hardly ever moved, I was not expecting the news that the baby was much smaller than it should be (They call it Intrauterine Growth Retardation), probable cause was that my placenta was not giving the baby what he needed. Also my amniotic fluid was extremely low. Then we were sent upstairs to Labor and Delivery. The initial plan was to keep injecting me with steroids for a two days, hoping for a growth spurt. But in the hour it took to give me 1 steroid shot and do another ultrasound, they decided it was too risky to wait. I was prepped for C section, sick to my stomach, searching in vain for a way to escape this hell.
Bodie Mitchell was born on August 17, 2010. It was my first surgery and was just as horrible as I imagined it would be! When the baby came out, I couldn't see anything but I didn't hear any crying. I just kept repeating "Please Be Ok, Please Be Ok, Please Be Ok". Finally I heard a very tiny cry, it didn't even sound like a baby. Of course he was whisked off before I could see him. Ever heard someone say "I wish I could just crawl into a hole and hide out there for a while", well I believe that's what happened inside my head. I was just functioning moment to moment, that's what my mind had to do to avoid a total breakdown.
-Brandi
Bodie's due date was October 15th, the same day as Wade's third birthday!
Everything seems fine until the 5th month when we went to find out the sex of the baby. The Doctor told us that it was a boy but that he was measuring a little small. We didn't think anything of it because Wade had been a week & a half late and only weighed 6 lb 1 oz. Nevertheless, we were referred to an Ultrasound Specialist. Going in there, we were not worried, fully expecting her to say the baby was fine, just a little small. We were wrong. She said the leg bones were much shorter than they should be, indicating Down's Syndrome or Dwarfism. Shock, Fear and Heartbreak overtook us. It took a while to calm down and stop sobbing, then we agreed to an Amniocentesis, which would tell us if he had Down's Syndrome but could not test for Dwarfism. If he tested posotive for Down's, we would then need to decide if we wanted to terminate.
This horrible day happened 5 days before we were leaving to go to Myrtle Beach SC for our yearly vacation. We spent a week on a beautiful beach pretending to have fun, all the while trying to figure out if we had it in us to care for a brain damaged child (and probably adult) or if we had it in us to terminate a pregnancy in the 5th, almost 6th month. It was agony, we cried ourselves to sleep every night.
Luckily, after 2 weeks of waiting, he tested negative for Down's. She said odds were that it was Dwarfism, but there was really no way to know what kind of dwarfism. At that point we had already commited ourselves to having the baby and dealing with whatever came our way. She scheduled another appt. for the next month.
2nd appointment with the Ultrasound Specialist- We were desperatly hoping to go in there and be told everything looked normal now, no more worries! Wrong again. Although I knew something was indeed wrong because I wasn't showing much and the baby hardly ever moved, I was not expecting the news that the baby was much smaller than it should be (They call it Intrauterine Growth Retardation), probable cause was that my placenta was not giving the baby what he needed. Also my amniotic fluid was extremely low. Then we were sent upstairs to Labor and Delivery. The initial plan was to keep injecting me with steroids for a two days, hoping for a growth spurt. But in the hour it took to give me 1 steroid shot and do another ultrasound, they decided it was too risky to wait. I was prepped for C section, sick to my stomach, searching in vain for a way to escape this hell.
Bodie Mitchell was born on August 17, 2010. It was my first surgery and was just as horrible as I imagined it would be! When the baby came out, I couldn't see anything but I didn't hear any crying. I just kept repeating "Please Be Ok, Please Be Ok, Please Be Ok". Finally I heard a very tiny cry, it didn't even sound like a baby. Of course he was whisked off before I could see him. Ever heard someone say "I wish I could just crawl into a hole and hide out there for a while", well I believe that's what happened inside my head. I was just functioning moment to moment, that's what my mind had to do to avoid a total breakdown.
-Brandi
Saturday, March 26, 2011
First Post...here goes
This is my first post on Bodie's Blog. I'm creating this blog to document my son Bodie's journey.
I hope this will accomplish a few things...
To have a running account of my son's life & the journey he takes on all levels, especially his medical issues.
To allow me a place to publicly express my love for my son & my whole family.
To help Bodie, and my family and others.
RH
I hope this will accomplish a few things...
To have a running account of my son's life & the journey he takes on all levels, especially his medical issues.
To allow me a place to publicly express my love for my son & my whole family.
To help Bodie, and my family and others.
RH
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