Kim, our summertime nanny/PCA came to say goodbye today. She is going off to grad school at the University of Wisconsin to become a speech language pathologist. We are so happy for her, but will miss her very much. She will always have a special place in our family. Kim was so patient and was always willing to learn new tasks. She was persistent and successful with Logan's therapies. We saw many gains in his skills after she worked with him. Thank you Kim for making such a positive impact on our lives in such a short period of time. We will miss you!
So now I dry up the tears! On the Logan front, he is doing well. He had a great weekend with Lauren and Dad. I had to work. Today his oxygen levels were all over the place. I have a feeling this is going to be his baseline for now. He isn't sick, just has a lot of secretions. We are starting to settle into his new routine now that he is on oxygen. I am hoping to get him out of the house this week. I am sure he needs a change of scenery.
Lauren had her per-kindergarten screening last week. She did great. I was so proud of her. I thought she was going to be shy but she walked right in and did everything they asked. She will have to have her hearing and vision screen again at her 4 year check up. She didn't pass. Not sure if it was nerves or true issues. We will give her another try and go from there. I don't think she has any major issues but maybe it is something that will need to be monitored. We will see! As Joel and I always say, "it is what it is!". Lauren will start preschool in September and we will celebrate her 4th birthday as well. Logan's 2nd birthday is coming up in October. They are growing up so fast! That is all for now!
Monday, August 20, 2012
Monday, August 13, 2012
More decisions to make
Since being discharged from the hospital, Logan has had many changes to his daily routine. He is on oxygen 24/7, requires oral, nasal, and deep suctioning as needed. He also receives vest treatments to assist with mobilizing his secretions and encouraging a cough. His oxygen saturations wax and wane. He has good days and bad and definitely becomes agitated when he can't clear his secretions. It seems as though his anxiety has increased. I pray this is temporary and just related to being in the hospital.
We have been exploring the option of having night nursing to help us during the overnights. Logan has had some struggles at night. We have a budget through the county that helps cover our nursing care. Unfortunately the budget will not fully cover increased nursing hours. We have the option of going on to a different waiver program but would lose some perks that we rely on such as a paid parent option. For those of you that don't know the process in our state/county...Logan has to be on medical assistance as our private insurance doesn't cover close to what we need to stay financially afloat. In order to have medical assistance, we have to pay a monthly parental fee that is based on our income. The more we make, the more we pay. Ideally we would like for me not to have to increase my hours at work in order to make ends meet to pay this parental fee and instead have me home more in order to provide care for our son as well as maintain the rest of our lives. The waiver helps make ends meet.
Many people have asked, doesn't your insurance cover private duty nursing? Nope. They cover home health visits meaning a once a week visit. Not good enough. It is so frustrating to pay a monthly premium from what we thought was a pretty darn good insurance company only to find out the coverages are so limited. Don't get me wrong, we are so fortunate to have insurance and appreciate everything that it gives us but come on, he is just a kid. Why do families have to fight so hard to get care for their children? Logan didn't ask to be born this way. We didn't do anything to purposefully cause this.
So, we are forced to seek help through the county. Thankfully we live where we do. We have great case managers who have helped us navigate the system every step of the way. Without Christine, Debra, and Bev we would be in financial ruins by now. I guess I am venting and doing some much needed complaining! I wish this was easier. I wish someone (the government or some really rich person) would say, "we are so sorry you are having to go through this, please let us take care of your child's medical expenses". If I was rich this would not be a problem,but Joel and I are two middle class working citizens doing the best to provide a good life for our family.
We still have options wether it be to not pursue night nursing at this time or move to a different waiver program and make some sacrifices with our time at home. Joel and I will weigh the options and make the best decision with what resources we are given.
I want you all to know that I don't put theses complaints out for all to read in order to drum up sympathy. I want everyone to understand what families like ours and so many others go through. In our communities live many children, adolescents, and adults with disabilities. We are not the only ones out there with these struggles. We are among a very special community of people.
Our time with Logan may be limited. I hate to think this way but with this most recent setback I have come to realize how fragile he really is. Every minute counts. I don't want to spend it angry and upset so thank you for listening as I work to navigate this journey!
We have been exploring the option of having night nursing to help us during the overnights. Logan has had some struggles at night. We have a budget through the county that helps cover our nursing care. Unfortunately the budget will not fully cover increased nursing hours. We have the option of going on to a different waiver program but would lose some perks that we rely on such as a paid parent option. For those of you that don't know the process in our state/county...Logan has to be on medical assistance as our private insurance doesn't cover close to what we need to stay financially afloat. In order to have medical assistance, we have to pay a monthly parental fee that is based on our income. The more we make, the more we pay. Ideally we would like for me not to have to increase my hours at work in order to make ends meet to pay this parental fee and instead have me home more in order to provide care for our son as well as maintain the rest of our lives. The waiver helps make ends meet.
Many people have asked, doesn't your insurance cover private duty nursing? Nope. They cover home health visits meaning a once a week visit. Not good enough. It is so frustrating to pay a monthly premium from what we thought was a pretty darn good insurance company only to find out the coverages are so limited. Don't get me wrong, we are so fortunate to have insurance and appreciate everything that it gives us but come on, he is just a kid. Why do families have to fight so hard to get care for their children? Logan didn't ask to be born this way. We didn't do anything to purposefully cause this.
So, we are forced to seek help through the county. Thankfully we live where we do. We have great case managers who have helped us navigate the system every step of the way. Without Christine, Debra, and Bev we would be in financial ruins by now. I guess I am venting and doing some much needed complaining! I wish this was easier. I wish someone (the government or some really rich person) would say, "we are so sorry you are having to go through this, please let us take care of your child's medical expenses". If I was rich this would not be a problem,but Joel and I are two middle class working citizens doing the best to provide a good life for our family.
We still have options wether it be to not pursue night nursing at this time or move to a different waiver program and make some sacrifices with our time at home. Joel and I will weigh the options and make the best decision with what resources we are given.
I want you all to know that I don't put theses complaints out for all to read in order to drum up sympathy. I want everyone to understand what families like ours and so many others go through. In our communities live many children, adolescents, and adults with disabilities. We are not the only ones out there with these struggles. We are among a very special community of people.
Our time with Logan may be limited. I hate to think this way but with this most recent setback I have come to realize how fragile he really is. Every minute counts. I don't want to spend it angry and upset so thank you for listening as I work to navigate this journey!
Thursday, August 9, 2012
Pneumonia
Logan was in the hospital with aspiration pneumonia from August 3rd to August 8th. He had a cold last Friday. We decided to still head to Brainerd that afternoon for a much needed weekend away. On the drive up Logan spiked a temp and was spitting up a lot of phlegm. It was like someone turned on a faucet. We got to Brainerd and Grandma Cindy gave him a nebulizer while I gave him Tylenol. After the neb he aspirated and could not clear his secretions. Essentially they became lodged in his airway. I performed some deep suctioning and cleared him up a little. We had him on pulse and oxygen saturation monitoring the entire time with no drop in is oxygen. His heart rate and respiratory rate spiked after the aspiration and continued to worsen. Cindy and I rushed him to the emergency room in Brainerd.
As soon as the doors opened to the ER the nurse at the front desk appeared concerned. She showed us straight back to a room and along the short walk, we acquired a large number of healthcare professionals! They quickly stabilized him with suctioning and nebulizers. As I stepped away from him to allow the nurses to work, it hit me how sick he really was. I scanned the room and realized we were in a resuscitation room (room for super sick people!). All the critical care equipment had magically appeared at his bedside. Thankfully the team swiftly and calmly tuned him up. His color and work of breathing improved. The doctor left to talk with the pediatrician. They decided to transfer Logan by ambulance to Children's Hospital in Minneapolis as this is where Logan receives his care.
So Logan and I made the two hour trek with the ambulance crew through quite the storm. The paramedic seemed nervous with Logan and watched him like a hawk. I forget how unnerving his noisy breathing can be for those not familiar with him. Plus I was still in denial about how sick he was! Silly me, where had my nurses assessment skills gone...out the window!
We safely arrived at Children's after some skillful hydro planing. My parents and friend Sara met us there. We waited in the ER for a few hours waiting for them to decide what level of care he needed. He was then transferred to the ICU for close monitoring as he was on high flow oxygen and required constant suctioning. We spent two nights in the ICU and then were down graded to step down ICU for the next three night. He is now home on antibiotics, oxygen 24/7, and has a cough assist vest that shakes the snot out of him literally! We learned today that he isn't back to baseline and being on oxygen is a good thing. He had an episode of fever, low sats, and increase in his sputum. He has been irritable all day as well.
He will remain on oxygen for a month until we see his pulmonologist. We are also exploring adding more nursing hours at nighttime. Joel and I need some rest and more help! This hospitalization has made me realize how fragile Logan is. If this cold bug put him in the ICU, what will happen this fall when the flu virus and all sorts of other respiratory illnesses are in full swing.
Right now there are so many changes. It is hard to see past the current crisis. I have a hard time leaving him for a second for fear something will go wrong. On top of everything we are getting an ambu bag, an emergency mask to assist with breathing. I knew this was coming and have said many times that it would be good to have. But now that it is here it is real and it is so scary to think that we may have to use it some day. I worry every day what our future holds. I worry that he will end up with a breathing tube and what quality of life is that. I want him to feel well and to be happy. It is not fair that this amazingly handsome boy has to be put through so much. He is supposed to be walking, running, and getting into all of my cupboards not laying on the floor surrounded by cords with oxygen in his nose. He is not supposed to struggle to breathe. We will continue to provide the best for him and adapt our surroundings to keep him comfortable and happy. We will not let this overcome us and will instead allow it to enhance us. Logan is a teacher and I learn something new from him every day.
Thank you for all the prayers and well wishes for Logan and our family. It takes many more people than Joel and I to raise this child and we appreciate all the help!
As soon as the doors opened to the ER the nurse at the front desk appeared concerned. She showed us straight back to a room and along the short walk, we acquired a large number of healthcare professionals! They quickly stabilized him with suctioning and nebulizers. As I stepped away from him to allow the nurses to work, it hit me how sick he really was. I scanned the room and realized we were in a resuscitation room (room for super sick people!). All the critical care equipment had magically appeared at his bedside. Thankfully the team swiftly and calmly tuned him up. His color and work of breathing improved. The doctor left to talk with the pediatrician. They decided to transfer Logan by ambulance to Children's Hospital in Minneapolis as this is where Logan receives his care.
So Logan and I made the two hour trek with the ambulance crew through quite the storm. The paramedic seemed nervous with Logan and watched him like a hawk. I forget how unnerving his noisy breathing can be for those not familiar with him. Plus I was still in denial about how sick he was! Silly me, where had my nurses assessment skills gone...out the window!
We safely arrived at Children's after some skillful hydro planing. My parents and friend Sara met us there. We waited in the ER for a few hours waiting for them to decide what level of care he needed. He was then transferred to the ICU for close monitoring as he was on high flow oxygen and required constant suctioning. We spent two nights in the ICU and then were down graded to step down ICU for the next three night. He is now home on antibiotics, oxygen 24/7, and has a cough assist vest that shakes the snot out of him literally! We learned today that he isn't back to baseline and being on oxygen is a good thing. He had an episode of fever, low sats, and increase in his sputum. He has been irritable all day as well.
He will remain on oxygen for a month until we see his pulmonologist. We are also exploring adding more nursing hours at nighttime. Joel and I need some rest and more help! This hospitalization has made me realize how fragile Logan is. If this cold bug put him in the ICU, what will happen this fall when the flu virus and all sorts of other respiratory illnesses are in full swing.
Right now there are so many changes. It is hard to see past the current crisis. I have a hard time leaving him for a second for fear something will go wrong. On top of everything we are getting an ambu bag, an emergency mask to assist with breathing. I knew this was coming and have said many times that it would be good to have. But now that it is here it is real and it is so scary to think that we may have to use it some day. I worry every day what our future holds. I worry that he will end up with a breathing tube and what quality of life is that. I want him to feel well and to be happy. It is not fair that this amazingly handsome boy has to be put through so much. He is supposed to be walking, running, and getting into all of my cupboards not laying on the floor surrounded by cords with oxygen in his nose. He is not supposed to struggle to breathe. We will continue to provide the best for him and adapt our surroundings to keep him comfortable and happy. We will not let this overcome us and will instead allow it to enhance us. Logan is a teacher and I learn something new from him every day.
Thank you for all the prayers and well wishes for Logan and our family. It takes many more people than Joel and I to raise this child and we appreciate all the help!
Tuesday, July 17, 2012
Genetics Results
Wow, I have been a little behind in my blogging! We went to the cabin for 4th of July, came back and I hit the ground running. Logan has a new nurse named Bonnie. She will work with him four days a week. We are so blessed to have her. We have had a few appointments as well. The ususal therapy, school visits, MD appointments, etc. Logan has been mostly healthy other than a blip on the radar last weekend. Some congestion that he then happily passed to his dad! So far Lauren and I have fared well and stayed away from the bug but you just never know when it will creep up.
Logan has had some problems with keeping his oxygen saturation up at night. He tends to drop multiple times a night sending me bolt right out of bed and scooting into his room as fast as I can. The alarm is really loud! We have put him on his oxygen a few times and the other times I have been able to reposition him to improve his breathing. It amazes me when I watch him during these episodes. For some reason he just continues to breathe through all the crud in his airway despite the fact that it is impeding on his oxygenation. He has no interest in coughing or waking up and instead just continues about his sleep as though nothing is going on. I on the otherhand sit there and fret trying to figure out if I should bite the bullet and deep suction him, wake him up, give him a nebulizer treatment, or put on the oxygen. All the while being half asleep myself. It is such a mind game. So I called the pulmonologist office today to see if they had some thoughts on what to do. Still waiting for the call back.
Today we received a call from the genetics office with results. They came much sooner than I expected. He tested negative for Angelman's Syndrome, has no chromosomal abnormalities both on a gross look under the microscope and then at a very detailed level as well. The genetics doctor still wants to see my Niece's records to find out if there are any clues to possibly elude to a diagnosis. If she find there is no more testing on her end, we will return to Mayo Clinic and most likely pursue the mitochondrial testing.
Like I have blogged about in the past, these days always come with mixed emotions. You want normal test results for your child but when your child is obviously not normal you want something to come back to explain the problem. I hate to say out loud that my child is not normal. I know a lot of people can't stand when someone uses the word normal to compare their child but guess what, I am!!! What else am I going to compare him to? He is at the level of a four month old when it comes to developement. He still does not talk or coo, does not sit on his own or stand, and only rolls one way. He can't eat and breathing is a chore. Does this sound normal! Ok, so a little venting going on right now if you didn't notice. Anyways, like I said these days are never easy. Lots of emotions to say the least. So I am a little crabby but like all the other days similar to this, they do pass and at the end of it I have the most cuddly, loving, and content child ever. He is handsome, sweet, and doesn't talk back!
As always I will keep you all up to date on our search. In the meantime Logan is training in our new nurse with ease! He really likes her and so do we! He will meet his Aunt Ashley and Uncle Scott from Canada this weekend. We are all very excited to see them and will spend some time at the lake cabin catching up. Hopefully we catch a little relief from the heat so Logan can have some time outside. It has been a little oppressive in Minnesota lately. I am trying not to complain about the beautiful weather but come on, if it is too hot for my kids to go out then it is just as much torture as winter. Hope everyone is enjoying their summer!
P.S. Congratulations to our friends Joe and Kayla on the birth of their new son Charlie!!!
Best regards,
Rachel
Logan has had some problems with keeping his oxygen saturation up at night. He tends to drop multiple times a night sending me bolt right out of bed and scooting into his room as fast as I can. The alarm is really loud! We have put him on his oxygen a few times and the other times I have been able to reposition him to improve his breathing. It amazes me when I watch him during these episodes. For some reason he just continues to breathe through all the crud in his airway despite the fact that it is impeding on his oxygenation. He has no interest in coughing or waking up and instead just continues about his sleep as though nothing is going on. I on the otherhand sit there and fret trying to figure out if I should bite the bullet and deep suction him, wake him up, give him a nebulizer treatment, or put on the oxygen. All the while being half asleep myself. It is such a mind game. So I called the pulmonologist office today to see if they had some thoughts on what to do. Still waiting for the call back.
Today we received a call from the genetics office with results. They came much sooner than I expected. He tested negative for Angelman's Syndrome, has no chromosomal abnormalities both on a gross look under the microscope and then at a very detailed level as well. The genetics doctor still wants to see my Niece's records to find out if there are any clues to possibly elude to a diagnosis. If she find there is no more testing on her end, we will return to Mayo Clinic and most likely pursue the mitochondrial testing.
Like I have blogged about in the past, these days always come with mixed emotions. You want normal test results for your child but when your child is obviously not normal you want something to come back to explain the problem. I hate to say out loud that my child is not normal. I know a lot of people can't stand when someone uses the word normal to compare their child but guess what, I am!!! What else am I going to compare him to? He is at the level of a four month old when it comes to developement. He still does not talk or coo, does not sit on his own or stand, and only rolls one way. He can't eat and breathing is a chore. Does this sound normal! Ok, so a little venting going on right now if you didn't notice. Anyways, like I said these days are never easy. Lots of emotions to say the least. So I am a little crabby but like all the other days similar to this, they do pass and at the end of it I have the most cuddly, loving, and content child ever. He is handsome, sweet, and doesn't talk back!
As always I will keep you all up to date on our search. In the meantime Logan is training in our new nurse with ease! He really likes her and so do we! He will meet his Aunt Ashley and Uncle Scott from Canada this weekend. We are all very excited to see them and will spend some time at the lake cabin catching up. Hopefully we catch a little relief from the heat so Logan can have some time outside. It has been a little oppressive in Minnesota lately. I am trying not to complain about the beautiful weather but come on, if it is too hot for my kids to go out then it is just as much torture as winter. Hope everyone is enjoying their summer!
P.S. Congratulations to our friends Joe and Kayla on the birth of their new son Charlie!!!
Best regards,
Rachel
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