Well yesterday I called the Mayo Clinic to see if Logan's skin biopsy results are back. The nurse called back and said that the doctor is on vacation and that the doctor on call did not feel comfortable talking to me about the results. The nurse said that the doctor said the results appeared normal and that he didn't know what our doctor would want to do from there. So I translate this to mean that we had normal test results. We should hear back from our doctor after the first of the year. Don't know if this means more tests? I have no clue. We did discuss the possibility of a spinal tap in the past but this was never pursued. I think he needs to be re-evaluated again so the doctor can see if there are any changes that may lead them in a different direction.
All in all, I am bummed out that we still don't have an answer but a little relieved at the same time. It is such a mind game to go through. You want a diagnosis but you don't want a bad diagnosis. And what does "bad" even mean. I guess it would just be nice to have an understanding of some sort of expectations for the future. I know we will never know exactly what the future holds but if he got a diagnosis we could at least know what other kids have experienced.
At the moment Logan is battling some pneumonia. Two nights ago he had a rough night and then spiked a pretty high fever which is not normal for him. He was breathing really fast and whimpering. I gave him a bunch of breathing treaments with no change so we trucked it to urgent care. They saw a little spot on his xray that was changed from previous so he is now on antibiotics. Last night was a rough one and this morning he was pretty fussy but some of his congestion is clearing this afternoon. He is such a trooper! Now Lauren isn't feeling well and I am starting to feel under the weather. Thank goodness Joel is coming home early from his fishing trip. Now he will get a house full of sick people!
Wednesday, December 28, 2011
Logan is our vibrant one year old with a suspected mitochondrial disorder. Logan was born without complications and seemed to be a pretty normal infant. He always was slow to meet milestones, didn't breast feed due to difficulty latching, and had horrible reflux. By the time he was six months old he was obviously missing developmental milestones. He had yet to smile, laugh, or coo. He could not hold his head up and was not attempting to crawl. He also poor weight gain, and abnormal movements of his body.
At six months of age his growth was falling off the charts. He was failing to thrive with little interest in drinking from a bottle. His pediatric nurse practitioner started us down the path towards answers.
Thus far we have found he has hypotonia, choreoathetosis, laryngomalacia, strabismus, and problems with elevated lactate levels in his blood stream. After seeing various specialists we are now awaiting skin biopsy results from Mayo Clinic. They checked for something called pyruvate dehydrogenase deficiency which was negative. They have since sent his skin fibroblasts to Baylor College in Texas for further mitochondrial testing.
In the meantime, Logan is at speech therapy a couple times a week and at occupational and physical therapy once a week. The school district also comes to the house weekly and we have a public health nurse that follows Logan's progress. He has G tube in place to receive feedings. Logan is so blessed ot have a great support group of family, friends, and healthcare and educational resources. We want to continue to thank all the people that have and continue to be integral to Logan's continued successes...Tammy, Sara, Bev, Patty, Dana, Katie, Jane, Nicole, Marilyn, and list goes on.
At six months of age his growth was falling off the charts. He was failing to thrive with little interest in drinking from a bottle. His pediatric nurse practitioner started us down the path towards answers.
Thus far we have found he has hypotonia, choreoathetosis, laryngomalacia, strabismus, and problems with elevated lactate levels in his blood stream. After seeing various specialists we are now awaiting skin biopsy results from Mayo Clinic. They checked for something called pyruvate dehydrogenase deficiency which was negative. They have since sent his skin fibroblasts to Baylor College in Texas for further mitochondrial testing.
In the meantime, Logan is at speech therapy a couple times a week and at occupational and physical therapy once a week. The school district also comes to the house weekly and we have a public health nurse that follows Logan's progress. He has G tube in place to receive feedings. Logan is so blessed ot have a great support group of family, friends, and healthcare and educational resources. We want to continue to thank all the people that have and continue to be integral to Logan's continued successes...Tammy, Sara, Bev, Patty, Dana, Katie, Jane, Nicole, Marilyn, and list goes on.
Monday, December 26, 2011
Christmas 2011
We did it! Christmas has come and gone. We made the haul to Fargo to have Christmas with my family the weekend before. Logan sat on Santa's lap. Lauren was too freaked out! And then we made the haul to Brainerd for the Zacher Christmas this past weekend. The kids did great. A little cranky but that is to be expected. Logan almost cracked a few smiles over the weekend. He is so close! Santa was very good to the kids this year and now mom and dad have to purge the house to make room for all the new things.
The end of our year will consist of cleaning up house and getting ready for the new year. Logan has a couple of his usual appointments this week including therapy and a meeting with the social worker. He was accepted for medical assistance so it will act as a secondary insurance and will hopefully open the gateway for more progams and assistance. Along with that we found out that the gov't will cover the cost of his monthly insurance premiums through my private insurance. There is a god! Every little bit helps. Otherwise things are status quo. Merry Christmas Everyone!
The end of our year will consist of cleaning up house and getting ready for the new year. Logan has a couple of his usual appointments this week including therapy and a meeting with the social worker. He was accepted for medical assistance so it will act as a secondary insurance and will hopefully open the gateway for more progams and assistance. Along with that we found out that the gov't will cover the cost of his monthly insurance premiums through my private insurance. There is a god! Every little bit helps. Otherwise things are status quo. Merry Christmas Everyone!
Monday, December 12, 2011
Swallow Study
Logan had a swallow study at Gillette last Friday. We had the test done to evaluate his swallowing after having gone through intense speech therapy using a technique called vital stim. Unfortunately the results were not positive. He is aspirating just about everything including his own secretions. The therapist at the test recommended we stop feeding Logan by mouth until he can be evaluated further. His congestion is improving. We are only having to give him a neb a couple times a day instead of every four hours. The GJ feeding tube is getting easier to work with. We are trying to figure out how to maneuver the tubing with his clothing. He is starting to outgrow a lot of the infant pajamas and onsies that helped hold the tubing in place. He is still skinny, all his growth shows in his height! I have done some web research on different clothing options and my mother in law, Cindy and I are going to try and make adjustments to his clothes.
A side note, a great side note!: Logan got his fourth tooth in last week. It is his second molar. He skipped a few of the front teeth and decided to grow molars instead!
A side note, a great side note!: Logan got his fourth tooth in last week. It is his second molar. He skipped a few of the front teeth and decided to grow molars instead!
Thursday, December 8, 2011
GJ Tube
Yesterday Logan had another procedure to modify his feeding tube also called a G tube. He had been taking some formula by bottle and the rest was being given in the feeding tube. Over the past month he has had a lot of upper airway congestion that was treated as pneumonia. His symptoms didn't resolve with two courses of antibiotics. Unfortunately they worsened. He has had trouble breathing and has been coughing up white/yellow gunk! So now he is on nebulizers (medication that he breathes with the help of a machine).
We have been told that his trachea is a little weak and that he aspirates (food/secretions go into his wind pipe). He also continues to have reflux. The thought is that he may be apsirating his reflux and that may be causing his difficulty breathing. So we decided with the GI doctors to have them place a GJ feeding tube. He was going to have his original feeding tube changed to a Mic-key button. This is a different type of feeding tube that is easier for kids because it is smaller. So when it was time to change his feeding tube to the new one they added the J part. This means that he has one tube in the stomach and another tube in the jejunum (upper part of the intestines). We feed him through the J tube at a slow rate over 18 hours per day. He can't get the feeding quickly because the intestines need time to absorb the food because we have bypassed the stomach. We give his medications through the G tube.
The hope is that his reflux will lessen. We are also planning on holding all bottle feeding for the next month and following up with GI in one month. If symptoms improve then we will have to decide if we can reintroduce the bottle. If they don't improve and it is in fact the reflux causing his difficulty breathing we may have to procede with a surgical option to lessen the reflux.
In the meantime we have a swallow study at Gillette Children's Hospital tomorrow morning. The speech therapist ordered this to evaluate his swallowing after going through a round of therapy called vital stim. We also see a new pediatrician who is specialized to treat special needs kids at Gillette Children's on January 19th. The hope is that this physician will be able to act as the gate keeper for Logan and help us coordinate all of his needs.
We are also in the process of applying for various programs to help Logan with his care including equipment and possibly PCA/nursing care if indicated/needed. We have a social worker that will most likely become his case manager that will help us navigate that end of the system.
When it comes to a diagnosis we are hoping to hear from Mayo Clinic any day. They sent his skin biopsy to Baylor College in Texas to perform more Mitochondrial testing.
All in all, Logan did great with the procedure. He gave the post-op nurse a run for his money. He came back to the room very fussy and upset and was wiggling all over! The nurse was a little overwhelmed with all his movements. I had to laugh and smile because it is always great to see Logan express his feelings even if they are feelings of displeasure. We made it home and the feedings have been going well. I was overwhelmed with all the new changes and just about had a melt down! Joel as always just rolled with it and has had no problem. Thank goodness he is so laid back and patient. He keeps me grounded. Lauren has been great too. She likes to help us take care of Logan. Tonight she was pretending to feed him while he was in his high chair. He just loves to watch her play. They are so good together. Thank you to everyone for the kind thoughts and prayers over the past couple of days.
Go Team Logan!!
Lots of love from the Zacher Clan
Go Gophers!!
We have been told that his trachea is a little weak and that he aspirates (food/secretions go into his wind pipe). He also continues to have reflux. The thought is that he may be apsirating his reflux and that may be causing his difficulty breathing. So we decided with the GI doctors to have them place a GJ feeding tube. He was going to have his original feeding tube changed to a Mic-key button. This is a different type of feeding tube that is easier for kids because it is smaller. So when it was time to change his feeding tube to the new one they added the J part. This means that he has one tube in the stomach and another tube in the jejunum (upper part of the intestines). We feed him through the J tube at a slow rate over 18 hours per day. He can't get the feeding quickly because the intestines need time to absorb the food because we have bypassed the stomach. We give his medications through the G tube.
The hope is that his reflux will lessen. We are also planning on holding all bottle feeding for the next month and following up with GI in one month. If symptoms improve then we will have to decide if we can reintroduce the bottle. If they don't improve and it is in fact the reflux causing his difficulty breathing we may have to procede with a surgical option to lessen the reflux.
In the meantime we have a swallow study at Gillette Children's Hospital tomorrow morning. The speech therapist ordered this to evaluate his swallowing after going through a round of therapy called vital stim. We also see a new pediatrician who is specialized to treat special needs kids at Gillette Children's on January 19th. The hope is that this physician will be able to act as the gate keeper for Logan and help us coordinate all of his needs.
We are also in the process of applying for various programs to help Logan with his care including equipment and possibly PCA/nursing care if indicated/needed. We have a social worker that will most likely become his case manager that will help us navigate that end of the system.
When it comes to a diagnosis we are hoping to hear from Mayo Clinic any day. They sent his skin biopsy to Baylor College in Texas to perform more Mitochondrial testing.
All in all, Logan did great with the procedure. He gave the post-op nurse a run for his money. He came back to the room very fussy and upset and was wiggling all over! The nurse was a little overwhelmed with all his movements. I had to laugh and smile because it is always great to see Logan express his feelings even if they are feelings of displeasure. We made it home and the feedings have been going well. I was overwhelmed with all the new changes and just about had a melt down! Joel as always just rolled with it and has had no problem. Thank goodness he is so laid back and patient. He keeps me grounded. Lauren has been great too. She likes to help us take care of Logan. Tonight she was pretending to feed him while he was in his high chair. He just loves to watch her play. They are so good together. Thank you to everyone for the kind thoughts and prayers over the past couple of days.
Go Team Logan!!
Lots of love from the Zacher Clan
Go Gophers!!
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