Here is a video of Logan playing bubbles on the Ipad
Thursday, May 31, 2012
Friday, May 18, 2012
Procedures
Today Logan had a laryngoscopy, bronchoscopy, and lumbar puncture. We went to Children's Hospital in Minneapolis for the procedures. Logan was placed under general anesthesia. The ENT doctor took a look with his flexible scope to see Logan's upper airway and then a ridgid scope to look further past the vocal cords and he did some washings of the right lung and obtained fluid for cultures. He gave us copies of the pictures he took. He said that Logan was "drowning in secretions" when he first looked. He said his vocal cords worked properly. He noted that Logan has very poor coordination of his swallowing. He said he does not "protect his airway very well". Anatomically everything looked great. His airway was strong and does not collapse as we first thought. This is called laryngomalacia.
So good news but at the same time a bummer! I was hoping for something that would explain why he is such a noisy breather and why he aspirates. Instead today further reinforced that Logan has muscle coordination issues and that we are still no closer to an answer. The ENT said that a tracheostomy is off the table at this point. He does not feel it is a good option and I totally agree. He talked to us about having some of his salivary glands tied off so that he would produce less saliva. That would then reduce the amount he aspirates. He said it is a pretty simple procedure that requires some incisions. He said it is something we can think about for the future. Otherwise he didn't have much else to offer.
I was upset after he left. I didn't realize I would feel so defeated after today. I was convinced that we would find something to explain the airway problems. I am very sad tonight thinking that my son may have some sort of disease or disorder that cannot be fixed. We have known for a long time that the chances of a cure are slim to none but hope and miracles always remain in the back of my mind! So we will continue to work very hard to keep him healthy and continue to pray for our little man!
Back to the lumbar puncture...so the pulmonologist worked with our neurologist to line up the lumbar puncture while Logan was put under. He had a doctor set up to come and perform the procedure after the scopes were done. They took spinal fluid for tests and are going to check a lactate level, amino acids, and check neurotransmitters. I am not sure when we will hear back but probably some time next week. Hopefully these tests will better direct the doctors to the right diagnosis. We still plan to see the genetics doctor in June. The genetics office had asked me to see if Dr. Sidman (ENT) would put in an order for them to consult while we were at the hospital but I felt as though we had enough going on today and didn't feel up for that added stress.
The procedures took about an hour. The recovery time was quite a bit longer. It took Logan about three hours to perk up to his usual self. In the past his recovery time was very short. He would always come back from post-op kicking. This time he was pretty sleepy and had a hard time keeping his oxygen saturation above 90%. So we cuddled with the oxygen and gave him time to rest. Tonight he is tired but seems happy to be home. I can't imagine what goes through his head when he is at the hospital and goes through all of this. I wish he could tell me how he feels and could tell me if he is scared or in pain. Now he is resting on his blanket watching TV. I am so happy to see him comfortable and resting. We will continue to pray for our little boy. He is our angel on earth!
So good news but at the same time a bummer! I was hoping for something that would explain why he is such a noisy breather and why he aspirates. Instead today further reinforced that Logan has muscle coordination issues and that we are still no closer to an answer. The ENT said that a tracheostomy is off the table at this point. He does not feel it is a good option and I totally agree. He talked to us about having some of his salivary glands tied off so that he would produce less saliva. That would then reduce the amount he aspirates. He said it is a pretty simple procedure that requires some incisions. He said it is something we can think about for the future. Otherwise he didn't have much else to offer.
I was upset after he left. I didn't realize I would feel so defeated after today. I was convinced that we would find something to explain the airway problems. I am very sad tonight thinking that my son may have some sort of disease or disorder that cannot be fixed. We have known for a long time that the chances of a cure are slim to none but hope and miracles always remain in the back of my mind! So we will continue to work very hard to keep him healthy and continue to pray for our little man!
Back to the lumbar puncture...so the pulmonologist worked with our neurologist to line up the lumbar puncture while Logan was put under. He had a doctor set up to come and perform the procedure after the scopes were done. They took spinal fluid for tests and are going to check a lactate level, amino acids, and check neurotransmitters. I am not sure when we will hear back but probably some time next week. Hopefully these tests will better direct the doctors to the right diagnosis. We still plan to see the genetics doctor in June. The genetics office had asked me to see if Dr. Sidman (ENT) would put in an order for them to consult while we were at the hospital but I felt as though we had enough going on today and didn't feel up for that added stress.
The procedures took about an hour. The recovery time was quite a bit longer. It took Logan about three hours to perk up to his usual self. In the past his recovery time was very short. He would always come back from post-op kicking. This time he was pretty sleepy and had a hard time keeping his oxygen saturation above 90%. So we cuddled with the oxygen and gave him time to rest. Tonight he is tired but seems happy to be home. I can't imagine what goes through his head when he is at the hospital and goes through all of this. I wish he could tell me how he feels and could tell me if he is scared or in pain. Now he is resting on his blanket watching TV. I am so happy to see him comfortable and resting. We will continue to pray for our little boy. He is our angel on earth!
Wednesday, May 9, 2012
From a bad day to a good day!
This week has been a bit of a roller coaster ride for me. Monday was a tough day. The insurance companies are playing games with our pharmacy regarding one of Logan's medications called Robinul. This medication helps dry up Logan's secretions/saliva so he has less to aspirate. The insurance company has asked our pharmacy to put in a request for a prior authorization from the doctor. This is a medication Logan has been on for a couple of months and we have refilled once before. Why all of a sudden they are questioning if it is medically necessary is beyond me. So Logan has been off the medication since last weekend and we can definitely tell. Poor little guy has a faucet of drool coming out of his mouth. Needless to say I was a basket case at the pharmacy on Monday and walked away in tears.
Then Logan and Lauren went to the dentist. It was not Lauren's first time at the dentist but if you were a bystander you would think differently. Every time I take her to the dentist she screams, cries, and bites the hygienists fingers. I thought this time would be better now that she is older. Well, things started off great and then the hygienist started showing Lauren all of the equipment. I understand what she was trying to do but was quickly apparent that it was too much for Lauren. I tried to calm her down but it just kept getting worse. I ended up having to pin her down on the hygienists legs and hold her down while she screamed and cry. I was crying by the end of it. She was happy when she got princess stickers. Why didn't I get any!
Logan did good but didn't like the dentist's fingers in his mouth! He made all sorts of funny faces and was not very happy! They didn't do an official cleaning. They were worried about him aspirating and they felt since he doesn't eat or drink that it was okay to hold off this time. They did put fluoride on. The dentist said it was interesting that Logan has his molars but has not gotten his top front teeth. He has the two bottom front teeth. He thinks he will get them but can't say for certain if he has teeth there without an xray. They will continue to monitor. They did recommend starting to brush his teeth and said everything looked good otherwise.
Yesterday Logan saw the pulmonologist for his four month check-up. The pulmonologist was just as puzzled during this visit as the first. He kept saying how nice it would be to have a diagnosis for Logan in order for him to know how to proceed. He talked about a procedure that could be done to divert the saliva from his mouth. I let him know that Logan has been doing very well other than his hospitalization for aspiration pneumonia. I talked to him about the resources with equipment that we have at home and that we are pursuing nursing care at home for Logan. I told him how I think we are doing a good job at keeping him healthy right now and that a procedure doesn't sound like something we would want right now.
I think this helped him. He seemed very conflicted and almost seemed as though he thought I was looking for an answer to the problem. I think I helped reassure him that we are just as puzzled as he is and that we understand that this is something that can't be fixed with one procedure. I told him about the laryngoscopy and bronchoscopy that Logan is going to have next week. I also mentioned some of the road blocks we have come across with Mayo and also the genetics visit coming up in the future. At the end of the visit he said he would call our neurologist and let him know that Logan was going under anesthesia next week and see if there were any tests that he would feel could be beneficial to a diagnosis for Logan. He also said he would send a note over to the genetics doctor to let her know of our visit.
I got a message today from the pulmonologist. He had talked to Logan's neurologist and the plan is for Logan to have a spinal tap (having spinal fluid removed to test) while he is under anesthesia for his scopes. The plan is to test it further to see if something can be gained from the results in order to lead the doctors in another direction in the search of a diagnosis. He has had an elevated lactate level in his blood a couple of times in the past and Mayo had mentioned performing a spinal tap previously. I am not sure what specifically will be tested but the pulmonologist said he will place the orders. He also notified the ENT doctor who said there will be enough OR time to complete the scope and spinal tap.
I am just in awe of our pulmonologist. To work to coordinate care for the benefit of my son is amazing. He didn't have to go above and beyond like this but has obviously done it because he cares. I am so thankful for him and his advocacy. It makes sense to do as much testing as possible when he is under anesthesia to avoid having to do it in the future. Logan is surrounded by so many amazing care givers. I truly think he has angels looking out for him every day on earth and in heaven. THANK YOU DR. KURACHEK!!!! And thank you to all of his angels and Team Logan!!! I will keep you all posted on how the scope goes....
Then Logan and Lauren went to the dentist. It was not Lauren's first time at the dentist but if you were a bystander you would think differently. Every time I take her to the dentist she screams, cries, and bites the hygienists fingers. I thought this time would be better now that she is older. Well, things started off great and then the hygienist started showing Lauren all of the equipment. I understand what she was trying to do but was quickly apparent that it was too much for Lauren. I tried to calm her down but it just kept getting worse. I ended up having to pin her down on the hygienists legs and hold her down while she screamed and cry. I was crying by the end of it. She was happy when she got princess stickers. Why didn't I get any!
Logan did good but didn't like the dentist's fingers in his mouth! He made all sorts of funny faces and was not very happy! They didn't do an official cleaning. They were worried about him aspirating and they felt since he doesn't eat or drink that it was okay to hold off this time. They did put fluoride on. The dentist said it was interesting that Logan has his molars but has not gotten his top front teeth. He has the two bottom front teeth. He thinks he will get them but can't say for certain if he has teeth there without an xray. They will continue to monitor. They did recommend starting to brush his teeth and said everything looked good otherwise.
Yesterday Logan saw the pulmonologist for his four month check-up. The pulmonologist was just as puzzled during this visit as the first. He kept saying how nice it would be to have a diagnosis for Logan in order for him to know how to proceed. He talked about a procedure that could be done to divert the saliva from his mouth. I let him know that Logan has been doing very well other than his hospitalization for aspiration pneumonia. I talked to him about the resources with equipment that we have at home and that we are pursuing nursing care at home for Logan. I told him how I think we are doing a good job at keeping him healthy right now and that a procedure doesn't sound like something we would want right now.
I think this helped him. He seemed very conflicted and almost seemed as though he thought I was looking for an answer to the problem. I think I helped reassure him that we are just as puzzled as he is and that we understand that this is something that can't be fixed with one procedure. I told him about the laryngoscopy and bronchoscopy that Logan is going to have next week. I also mentioned some of the road blocks we have come across with Mayo and also the genetics visit coming up in the future. At the end of the visit he said he would call our neurologist and let him know that Logan was going under anesthesia next week and see if there were any tests that he would feel could be beneficial to a diagnosis for Logan. He also said he would send a note over to the genetics doctor to let her know of our visit.
I got a message today from the pulmonologist. He had talked to Logan's neurologist and the plan is for Logan to have a spinal tap (having spinal fluid removed to test) while he is under anesthesia for his scopes. The plan is to test it further to see if something can be gained from the results in order to lead the doctors in another direction in the search of a diagnosis. He has had an elevated lactate level in his blood a couple of times in the past and Mayo had mentioned performing a spinal tap previously. I am not sure what specifically will be tested but the pulmonologist said he will place the orders. He also notified the ENT doctor who said there will be enough OR time to complete the scope and spinal tap.
I am just in awe of our pulmonologist. To work to coordinate care for the benefit of my son is amazing. He didn't have to go above and beyond like this but has obviously done it because he cares. I am so thankful for him and his advocacy. It makes sense to do as much testing as possible when he is under anesthesia to avoid having to do it in the future. Logan is surrounded by so many amazing care givers. I truly think he has angels looking out for him every day on earth and in heaven. THANK YOU DR. KURACHEK!!!! And thank you to all of his angels and Team Logan!!! I will keep you all posted on how the scope goes....
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