Tomorrow Logan goes in for his wheelchair fitting. We should be bringing it home with us! I will post photos as soon as I can. We have been waiting a handful of months for this. so exciting!!
Wednesday, September 26, 2012
Lauren's Birthday
Last Friday was Lauren's 4th birthday. We made a trek to Fargo to visit with my family. The kids had a great weekend. Logan did so well and had a very healthy trip! We went to the Fargo Fall Fest. Lauren and her cousin Maddie played in the bouncy castle, went on the slide, painted pumpkins, rode ponies, and played with animals at the petting zoo. It was cold and windy (go figure, its Fargo) so Logan and I headed back to my parents. The rest of the crew went go-carting. To my surprise, Lauren had a blast! I thought she would be scared, boy I was wrong. She had a good birthday weekend and returned home with a ton of toys. Now it is time for me to purge her toy box!
Tomorrow Logan goes in for his wheelchair fitting. We should be bringing it home with us! I will post photos as soon as I can. We have been waiting a handful of months for this. so exciting!!
Tomorrow Logan goes in for his wheelchair fitting. We should be bringing it home with us! I will post photos as soon as I can. We have been waiting a handful of months for this. so exciting!!
Thursday, September 20, 2012
Genetics
Our highly anticipated second appointment with the geneticist was today. Dr. M had a well planned proposal. She had done her homework! She reviewed my niece Sarah's records, spoke with a neurologist, and reviewed all his previous testing including his most recent MRI. We discussed three different possibilities that could explain Logan's symptoms.
She said he could have a form of Huntington's disease. She thinks this is highly unlikely. Huntington's is passed down through the generations and can occur earlier in life with each successive generation. Joel and I have no close family members with Huntington's.
She said there is a possibility that he shares the same problem as his cousin Sarah. Sarah did not have a diagnosis. Dr. M believes that the normal MRI's for Logan and abnormal MRI's for Sarah are big differences that may prove them to have different disorders. But even that does not rule out the possibility that they share the same problem. Both children have similar symptoms that sound like a lysosomal storage disorder, but Logan does not have degeneration of the white matter of his brain as Sarah did.
Finally, she thinks he may have inherited a recessive trait. This, means Joel and I would have to be carriers of the same gene for Logan to express it. The testing so far has not revealed any major clues. At this point we have to broaden the search. So here is the big take away from the appointment... DNA Sequencing! Dr. M presented this idea and wanted to discuss it at length with us. She said this would require Logan, Lauren, Joel and myself to give a blood sample. They would then sequence our DNA looking for mutations to see if we carry similar genes that could explain Logan's symptoms.
This test is sort of like opening Pandora's box. If we choose, we could not only learn what is causing Logan's problems but also learn what diseases we are carriers of. Do we really want to know? What does someone do with that kind of information? I worry that I would be tormented by all of the possible diseases that could come up in my future if knew that I was a carrier. Yikes! Thankfully we are able to choose what information we would like to know.
Where do we go from here? We wait until we get insurance approval as this is a 7,000-10,000 dollar test. That will take ten days. Once approved we get blood drawn and wait four to six months. Yes, more waiting. I am still wrapping my brain around how far we have come in our search for answers. Dr. M said she has only ordered DNA sequencing on one other patient and her colleague has only done it a few times.
She said in the meantime that we could go back down to the Mayo Clinic to see Dr. R again to look at the possibilities of this being a mitochondrial disorder. She said she believes we have ruled out a mitochondrial disorder with the testing thus far but admitted that mitochondrial disorders are not her specialty. Not sure yet if we will head back down to Mayo. We will see.
So no answers but some hope for a diagnosis. This is not something to take lightly. I appreciate how determined Dr. M is. I also appreciated her willingness to discuss ideas with me. She is a rare gem! We are so lucky to have her on our side.
On another note, my Grandpa Mervyn passed away early yesterday morning. He fought cancer for two years and put up a strong fight. I did not have a close relationship with him but always knew he loved me. He will be missed by all who loved him. Rest in peace Grandpa!
She said he could have a form of Huntington's disease. She thinks this is highly unlikely. Huntington's is passed down through the generations and can occur earlier in life with each successive generation. Joel and I have no close family members with Huntington's.
She said there is a possibility that he shares the same problem as his cousin Sarah. Sarah did not have a diagnosis. Dr. M believes that the normal MRI's for Logan and abnormal MRI's for Sarah are big differences that may prove them to have different disorders. But even that does not rule out the possibility that they share the same problem. Both children have similar symptoms that sound like a lysosomal storage disorder, but Logan does not have degeneration of the white matter of his brain as Sarah did.
Finally, she thinks he may have inherited a recessive trait. This, means Joel and I would have to be carriers of the same gene for Logan to express it. The testing so far has not revealed any major clues. At this point we have to broaden the search. So here is the big take away from the appointment... DNA Sequencing! Dr. M presented this idea and wanted to discuss it at length with us. She said this would require Logan, Lauren, Joel and myself to give a blood sample. They would then sequence our DNA looking for mutations to see if we carry similar genes that could explain Logan's symptoms.
This test is sort of like opening Pandora's box. If we choose, we could not only learn what is causing Logan's problems but also learn what diseases we are carriers of. Do we really want to know? What does someone do with that kind of information? I worry that I would be tormented by all of the possible diseases that could come up in my future if knew that I was a carrier. Yikes! Thankfully we are able to choose what information we would like to know.
Where do we go from here? We wait until we get insurance approval as this is a 7,000-10,000 dollar test. That will take ten days. Once approved we get blood drawn and wait four to six months. Yes, more waiting. I am still wrapping my brain around how far we have come in our search for answers. Dr. M said she has only ordered DNA sequencing on one other patient and her colleague has only done it a few times.
She said in the meantime that we could go back down to the Mayo Clinic to see Dr. R again to look at the possibilities of this being a mitochondrial disorder. She said she believes we have ruled out a mitochondrial disorder with the testing thus far but admitted that mitochondrial disorders are not her specialty. Not sure yet if we will head back down to Mayo. We will see.
So no answers but some hope for a diagnosis. This is not something to take lightly. I appreciate how determined Dr. M is. I also appreciated her willingness to discuss ideas with me. She is a rare gem! We are so lucky to have her on our side.
On another note, my Grandpa Mervyn passed away early yesterday morning. He fought cancer for two years and put up a strong fight. I did not have a close relationship with him but always knew he loved me. He will be missed by all who loved him. Rest in peace Grandpa!
Sunday, September 16, 2012
Week in review
Illness
We have just wrapped up a busy week! Logan fought off a cold that he and I both shared. He was beginning to get pretty sick so our nurse Bonnie called the doctor and they gave us orders to start antibiotics and steroids. It was obvious that he was on a path to full blown pneumonia which tends to lead to a hospitalization. We gave him tons of t.l.c. He recovered in a couple of days.
Therapy
Logan saw physical and speech therapy for the first time in a couple of months. The PT wants to see if we can get Logan to start rolling from his stomach to his back. He can roll to his stomach and then gets stuck like a beached whale! Our speech therapist thinks Logan's oral aversion is getting worse. He has been grinding his teeth and she thinks this is part of the aversion. We are going to start introducing some oral stimulation to try and get rid of his bad habits. We just have to be careful because of his aspiration issues. I am excited to have him back in therapy. They always see the positive things that I tend to overlook!
Sara
We found out this week that our physical therapist from the school district, Sara, will no longer be with us. Her case load has been changed around. It is such a bummer to lose her. She has been with us through most of Logan's journey. I am so thankful we have her in our lives. She is such a phenomenal advocate and is one who thinks outside of the box. We have shared tears and laughter and many fun stories. Logan could not be where he is today without Team Logan and Sara has been one of the leaders! Thank you Sara. You may not see us every week but we will most surely remain in touch.
Preschool for Lauren
Lauren started preschool this week. The first day was a parent child day. At first she was not too happy I was staying but then quickly realized she was a little scared. Lauren is very shy with new people. She did great exploring the classroom with me by her side. She had a couple of meltdowns
when other kids pushed in front of her or started playing with her toys. I have to say I am proud to see that taking turns and having boundaries are important to her but sometimes I would like to see her with more confidence. I think preschool will do the trick!
Emergency Room
We did have a trip to the ER this weekend. On Friday night Logan had blood backing up from his feeding tube into the tubing that delivers his food. He was very fussy at the time as well. He was screaming out in pain and we couldn't figure out what was going on. He had just finished up his cough assist treatment that vibrates his chest. We figured his treatment had caused some irritation but we couldn't be sure. There was a chance that the tubing inside him had become dislodged and unfortunately we do not have X-ray vision! So we hauled him to Children's. An X-ray proved it remained in place and he appeared more comfortable. She offered to call the GI doctors to run everything by them before we left but Joel and I were happy with a normal X-ray and declined the call. We have had no trouble since that time.
Genetics
This coming week we see the geneticist for another evaluation. We will see of she comes up with some other possible diseases or syndromes that we can check for. I pray we get some kind of answer but know that we could strike out again. It is so hard not knowing!
Grandpa
On another note, I just found out that my Grandpa Mervyn is back in the hospital. He is battling cancer and his oxygen levels are very low. My mom and aunt are heading out there on Tuesday. I wish I could be there with them. The last time I saw him was about three years ago. My mom, sister Jackie, Lauren and I made the road trip to Ontario for my cousins wedding. During the trip we drove to Niagara Falls. During the drive my grandpa started singing to Lauren. I will never forget that moment. I still get chills thinking about it! In that moment, all was right with the world.
We have just wrapped up a busy week! Logan fought off a cold that he and I both shared. He was beginning to get pretty sick so our nurse Bonnie called the doctor and they gave us orders to start antibiotics and steroids. It was obvious that he was on a path to full blown pneumonia which tends to lead to a hospitalization. We gave him tons of t.l.c. He recovered in a couple of days.
Therapy
Logan saw physical and speech therapy for the first time in a couple of months. The PT wants to see if we can get Logan to start rolling from his stomach to his back. He can roll to his stomach and then gets stuck like a beached whale! Our speech therapist thinks Logan's oral aversion is getting worse. He has been grinding his teeth and she thinks this is part of the aversion. We are going to start introducing some oral stimulation to try and get rid of his bad habits. We just have to be careful because of his aspiration issues. I am excited to have him back in therapy. They always see the positive things that I tend to overlook!
Sara
We found out this week that our physical therapist from the school district, Sara, will no longer be with us. Her case load has been changed around. It is such a bummer to lose her. She has been with us through most of Logan's journey. I am so thankful we have her in our lives. She is such a phenomenal advocate and is one who thinks outside of the box. We have shared tears and laughter and many fun stories. Logan could not be where he is today without Team Logan and Sara has been one of the leaders! Thank you Sara. You may not see us every week but we will most surely remain in touch.
Preschool for Lauren
Lauren started preschool this week. The first day was a parent child day. At first she was not too happy I was staying but then quickly realized she was a little scared. Lauren is very shy with new people. She did great exploring the classroom with me by her side. She had a couple of meltdowns
when other kids pushed in front of her or started playing with her toys. I have to say I am proud to see that taking turns and having boundaries are important to her but sometimes I would like to see her with more confidence. I think preschool will do the trick!
Emergency Room
We did have a trip to the ER this weekend. On Friday night Logan had blood backing up from his feeding tube into the tubing that delivers his food. He was very fussy at the time as well. He was screaming out in pain and we couldn't figure out what was going on. He had just finished up his cough assist treatment that vibrates his chest. We figured his treatment had caused some irritation but we couldn't be sure. There was a chance that the tubing inside him had become dislodged and unfortunately we do not have X-ray vision! So we hauled him to Children's. An X-ray proved it remained in place and he appeared more comfortable. She offered to call the GI doctors to run everything by them before we left but Joel and I were happy with a normal X-ray and declined the call. We have had no trouble since that time.
Genetics
This coming week we see the geneticist for another evaluation. We will see of she comes up with some other possible diseases or syndromes that we can check for. I pray we get some kind of answer but know that we could strike out again. It is so hard not knowing!
Grandpa
On another note, I just found out that my Grandpa Mervyn is back in the hospital. He is battling cancer and his oxygen levels are very low. My mom and aunt are heading out there on Tuesday. I wish I could be there with them. The last time I saw him was about three years ago. My mom, sister Jackie, Lauren and I made the road trip to Ontario for my cousins wedding. During the trip we drove to Niagara Falls. During the drive my grandpa started singing to Lauren. I will never forget that moment. I still get chills thinking about it! In that moment, all was right with the world.
Monday, September 10, 2012
Pulmonology Follow-up
Logan saw the pulmonologist last week. This was a follow up visit after his hospitalization for pneumonia in August. I was nervous about this appointment. These are always tough visits that bring a ton of emotions.
We started the appointment with Dr. K asking where we are with a diagnosis. I gave him a recap which provided no new information. I quickly sensed frustration from him. At every appointment, Dr. K always stresses the need for a diagnosis. I didn't fully understand this pressing need on his part until this visit. He explained (remember this is in my own words and is a little fuzzy), that a diagnosis would give us a prognosis for his future. If we knew what we were dealing with, we would better decide how to intervene to lessen or stop his chronic aspiration.
Some of the things I am going to say are tough to hear but I need to say them...if we find that Logan's life expectancy is short, Dr. K explained that we would want to decide how we would proceed. Meaning, would we do everything we could to prolong his life or change our focus to comfort care. The big intervention that would essentially stop his aspiration would be a tracheal diversion. This would be a reconstruction of his airway and would mean he would have a tracheostomy (an opening into his airway through his neck). Dr. K said the procedure itself is not what we would need to worry about. We would need to know that a procedure like this would have a huge effect on our lives. If we knew that his life expectancy would be longer we would know that intervening would improve his quality of life. If our time with Logan is short, Joel and I need to decide what we want to be his quality of life. I can't speak for my husband, but if our time with Logan is short, I want him to be happy and comfortable. I don't want machines to overtake our lives and take away from our possibly precious time. Obviously these are raw emotions and I am still processing it all, but it remains a possibility. These are all decisions that we are going to have to make at some point. I want to be educated about our options and also be able to take the time to dig deep into my beliefs to explore how I feel.
I hate to say it, but this last year of Logan's life has changed significantly. A year ago, he could breathe with more ease. He was always noisy but not to the point of being unable to protect his airway. Developmentally he has made gains and has had losses. Overall, his physical health has significantly declined. After every illness Logan does not fully bounce back. His health needs are constantly increasing.
I explained to Dr. K how upsetting it is to see him struggle to breathe every day. I told him that we need more options to care for him and I shared my ideas. I also talked to him about my worries for Logan's health going into cold and flu season. So we have a new plan of care. He has added atropine drops to decrease the saliva in his mouth. Logan is now on a low dose antibiotic. This definitely comes with risks...diarrhea, resistance, etc. He will remain on oxygen. He received the pneumococcal vaccine. The office is also going to see if insurance will cover the RSV vaccine and he will get a flu shot soon.
Dr. K also discussed the possibility of using a replogle tube at night. This is a small tube that is inserted into the nose and placed on intermittent suction. It is normally used in newborns with esophageal atresia (the esophagus does not fully develop). Dr. K thinks it may be helpful for Logan if used at night. His thought is that it would decrease the amount of saliva entering his lungs while he sleeps. I have attempted to research the replogle tube but can only find its use in the newborns with an esophageal defect. It seems to be a short term solution in those cases until surgery is performed. Also, Joel and I have discussed this at length and have decided to put this intervention on the back burner. We are concerned that this will cause discomfort, may possibily introduce infection, and
disrupt his sleep.
I feel as though we have a good plan in place but live every day in fear that he will get sick and end up in the hospital. We talked about keeping him away from public places as much as possible. Dr. K says he has chronic bronchitis and that even a simple virus can exacerbate his lung problems and cause pneumonia. All the antibiotics and vaccines in the world will not ward off a virus.
It really sucks living with the constant worry for his health. I hate to see him this way. I cried the entire way to work the other day. It came out of no where. I have to say that my steering wheel has caught a lot of tears over this last year and a half! This roller coaster ride has been quite a journey. I have learned so much from my miracle son. He has taught me to be a much kinder, patient, and understanding person. I hope he knows how special he really is.
I am so thankful to have Dr. K and his endless wisdom. The support he provides is amazing. He is always willing to answer my questions and he listens to what I say. He is also very attentive to Logan and never gives up on us! Thank you Dr. K. You make it easy to place our trust in you!
We started the appointment with Dr. K asking where we are with a diagnosis. I gave him a recap which provided no new information. I quickly sensed frustration from him. At every appointment, Dr. K always stresses the need for a diagnosis. I didn't fully understand this pressing need on his part until this visit. He explained (remember this is in my own words and is a little fuzzy), that a diagnosis would give us a prognosis for his future. If we knew what we were dealing with, we would better decide how to intervene to lessen or stop his chronic aspiration.
Some of the things I am going to say are tough to hear but I need to say them...if we find that Logan's life expectancy is short, Dr. K explained that we would want to decide how we would proceed. Meaning, would we do everything we could to prolong his life or change our focus to comfort care. The big intervention that would essentially stop his aspiration would be a tracheal diversion. This would be a reconstruction of his airway and would mean he would have a tracheostomy (an opening into his airway through his neck). Dr. K said the procedure itself is not what we would need to worry about. We would need to know that a procedure like this would have a huge effect on our lives. If we knew that his life expectancy would be longer we would know that intervening would improve his quality of life. If our time with Logan is short, Joel and I need to decide what we want to be his quality of life. I can't speak for my husband, but if our time with Logan is short, I want him to be happy and comfortable. I don't want machines to overtake our lives and take away from our possibly precious time. Obviously these are raw emotions and I am still processing it all, but it remains a possibility. These are all decisions that we are going to have to make at some point. I want to be educated about our options and also be able to take the time to dig deep into my beliefs to explore how I feel.
I hate to say it, but this last year of Logan's life has changed significantly. A year ago, he could breathe with more ease. He was always noisy but not to the point of being unable to protect his airway. Developmentally he has made gains and has had losses. Overall, his physical health has significantly declined. After every illness Logan does not fully bounce back. His health needs are constantly increasing.
I explained to Dr. K how upsetting it is to see him struggle to breathe every day. I told him that we need more options to care for him and I shared my ideas. I also talked to him about my worries for Logan's health going into cold and flu season. So we have a new plan of care. He has added atropine drops to decrease the saliva in his mouth. Logan is now on a low dose antibiotic. This definitely comes with risks...diarrhea, resistance, etc. He will remain on oxygen. He received the pneumococcal vaccine. The office is also going to see if insurance will cover the RSV vaccine and he will get a flu shot soon.
Dr. K also discussed the possibility of using a replogle tube at night. This is a small tube that is inserted into the nose and placed on intermittent suction. It is normally used in newborns with esophageal atresia (the esophagus does not fully develop). Dr. K thinks it may be helpful for Logan if used at night. His thought is that it would decrease the amount of saliva entering his lungs while he sleeps. I have attempted to research the replogle tube but can only find its use in the newborns with an esophageal defect. It seems to be a short term solution in those cases until surgery is performed. Also, Joel and I have discussed this at length and have decided to put this intervention on the back burner. We are concerned that this will cause discomfort, may possibily introduce infection, and
disrupt his sleep.
I feel as though we have a good plan in place but live every day in fear that he will get sick and end up in the hospital. We talked about keeping him away from public places as much as possible. Dr. K says he has chronic bronchitis and that even a simple virus can exacerbate his lung problems and cause pneumonia. All the antibiotics and vaccines in the world will not ward off a virus.
It really sucks living with the constant worry for his health. I hate to see him this way. I cried the entire way to work the other day. It came out of no where. I have to say that my steering wheel has caught a lot of tears over this last year and a half! This roller coaster ride has been quite a journey. I have learned so much from my miracle son. He has taught me to be a much kinder, patient, and understanding person. I hope he knows how special he really is.
I am so thankful to have Dr. K and his endless wisdom. The support he provides is amazing. He is always willing to answer my questions and he listens to what I say. He is also very attentive to Logan and never gives up on us! Thank you Dr. K. You make it easy to place our trust in you!
Tuesday, September 4, 2012
Ughhh
Once again I have been on another emotional roller coaster. Thankfully it is not directly due to Logan's health. He is actually doing very well. My stress is related to the care he receives. With this blog I try to be respectful about others feelings and reputations. I have no intention of gossiping, transmitting complaints related to individual people, or pointing fingers at those who make mistakes. Right now we are going through a tough time with the company that is in charge of Logan's nursing care. The direct care he is given is phenomenal but there seems to be some turmoil within the company. As Logan's caregiver and advocate I am going to do what is required to obtain the best care for him. Right now that job has become very stressful and has possibly caused me a case of prolonged high blood pressure! It is all going to be sorted out because that is my job as his mom, but this sucks. I pray that we will get to a better place with our situation and my stress levels will decrease. Thank you for listening. I know a lot of what I just said does not completely make sense!
Moving on from that... I have to say Logan and Lauren are real troopers. Our air conditioner went out a couple of days ago. It has been hot and miserable. Tonight we are having a sleepover in the basement. I have to say, it is so comforting having them close. I love to be able to wake up and peek open my eyes to watch them sleep. They are so peaceful with not a care or worry in the world. Those are the moments when all the stress, worry, and distractions melt away. Those are the moments to live for and tonight I get my precious time with them! I am so lucky to have them!
Tomorrow Logan goes to the pulmonologist for a check up. It will be the first visit since his hospitalization. I have a list of questions to ask. Logan has been on oxygen since the hospitalization. There are times when the oxygen is essential to keep his oxygen saturation up. Other times he holds well on his own. I guess we will see. I also toss and turn as to what we should do regarding his chronic aspiration problems. As you all know, cold and flu season is fast approaching. Do we wait until he is sick again to decide to intervene or do we start looking at interventions that may decrease his aspiration. As of now, he is only aspirating saliva and possibly aspirating stomach contents which are very minimal as his food bypasses his stomach, but it is enough to cause oxygenation problems and anxiety for Logan. I will continue to update the blog as we decide what route to pursue. I truly would like to know on a 0-10 scale, how bad are things for him. Sometimes I wonder "am I blowing this out of proportion". I am always so worried that I am taking from others by asking for more services and more help. I have such a hard time knowing where Logan is at medically. I have gotten so used to adapting to the changes that my perception has become hazy.
Thank you for listening and for the continued support. Also, please put my Grandpa Mervyn in your prayers tonight. He has been fiercely wrestling cancer and is in the hospital. Unfortunately he is in Canada so a visit is not in the cards for me but his health and comfort will weigh heavily on my heart. Thank you to my wonderful family in Ontario for giving him more love and support anyone could ask for!
Uncle Mike, my mom Patricia, Grandpa Mervyn, and Aunt Theresa (2009)
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