Neuro Appt

Logan had a regular neurology appointment last week. I knew it would be a tough appointment. Logan has had some changes that needed discussing. He is having a newer type of seizure activity and decline in movement and interest in activities. The neurologist quickly decided he wants an EEG and MRI. Logan had an EEG last spring that was for 12 hours overnight. This time its 8 hours during the day instead. Doesn't that sound exciting! 

So on monday, he has a pre-op physical for the MRI. Tuesday is the EEG. Friday is the MRI. He will go under general anesthsia for the MRI. I was hoping light sedation would be ok but his neurologist wants him completely under. They will draw labs at the same time. The neurologist wants to check his liver, thyroid, and blood counts to make sure nothing has changed. 

I am looking forward to finding out if he is having new seizures so we can treat them. It is miserable watching hiim have seizures off and on all throughout the day. The MRI on the other hand is a double edged sword. I want to know if he is having more changes to his brain to know if the degeneration is worsening. But then I don't want to know because it may confirm that fact which means things are progressing in a bad way. Yuck. This is no fun. I know it is Christmas week but they had the appointments open so we went with it. Might as well get it over with while Joel is off work. 

Christmas is almost here and we are just about ready. A few more cookies to bake, some stocking stuffers to buy, and presents to wrap. Hoping I am productive tomorrow. Logan and Lauren saw Santa last weekend. We went to a local hotel to see him. We had breakfast with Santa last year and it went so well we went back. It is much easier than waiting in line at the mall. They also accept donations for toys for tots and give wrist bands to the water park in exchange. Lauren will enjoy using the wrist bands as she just finished her second round of swim lessons. It is amazing how far she has come since September. I am hoping she will want to continue as she really seems to enjoy it. Logan was great with Santa. He sat on his lap too. The environment was perfect for Logan. Not too loud or busy. We spent some time sitting at the craft table with another family. The other kids were so sweet and gave Logan their projects. 

I will keep the blog updated when we have results of his tests. It will be a bit of a stressful week! If I don't blog before the big day, Merry Christmas everyone. I hope you all enjoy a few moments of holiday bliss and love and receive the benefits of holiday giving. I know I had a wonderful suprise in line at Starbucks this week when someone paid for my drink! It made my day! 

Puke

Well Logan was having a decent day until tonight. He was sleepy today but otherwise no issues. I went to sit next to him this evening as he seemed in distress, maybe on the verge of either a seizure or a sneeze. It was a sneeze coming on which means lots of secretions so I had the catheter ready and in his mouth. Next thing I knew, I could smell puke. I was thankfully suctioning it out of his mouth as it was happening. Hopefully preventing it from aspirating into his trach. 

Ugh. I had called his gastroenterology office this morning to inquire about this same problem we have had as of lately. I was hoping it was a one off deal but I think we have a problem. Either his Nissen surgery was not good enough or we are giving him more volume than he can handle.

For this evening, the nurse is venting his stomach. This means we let the stomach contents drain from his G tube into a diaper and allow his tummy to decompress. For all we know he could be fighting a tummy bug but that is unlikely. I have a feeling we are up against a surgery that was not 100% successful or a tummy that just can't handle what we are giving it.

I asked the nurse to change his trach to lessen the chance of a lung infection. The change went perfectly. But after the vomiting, he was so shaky. Something I am not used to. I felt so bad watching him in distress. He appeared so uncomfortable, just like any other child that just vomited. Lauren is always a little weepy afterwards and the look on his face was the same. Poor Bubba. Hopefully we have a handle on it for the night. I think we were able to prevent the vomit from going into his trach. Fingers crossed! 

I have to say I am a little nervous about the conversations I have heard about this years flu vaccine. I have my own research to do but it sounds like the efficacy is in question. Yikes, hopefully kiddos like Logan can stay away from catching this yucky virus. I know we all have to remain on high alert but I know my mommy feelers are up. Is it time to post sanitizer at the doors of the house, maybe not a bad idea. I'm just saying! 

For now we remain vigilant on all fronts. It's a viral "war zone" out there. You never know where it is coming from!  

December

Happy December! It's amazing how fast the holidays are approaching! Logan is well. He was sick about two weeks ago with some sort of a virus. He had a fever and respiratory issues. We ended up putting him on steroids and antibiotics to help him through. It was a rough one. Even after the illness was gone he was still having problems with agitation and wheezing. This one just took a little longer than usual. Thankfully no hospital visits were needed. We are so fortunate to have a great team at the pulmonologists office.

Now Logan is back to school. We are back into a routine. Unfortuately Logan's bed broke on Friday. The company we bought it from came to look at it on Friday and had no clue how to fix it. I am pretty disappointed as he has had to sleep on his mat in the living room. The position his bed is in does not work for sleeping. I can't find any sort of manual way to move the bed. I am suprised. I would have thought there would have to be a way to lower the bed in an emergency. Hopefully they can fix it first thing this week. It's called a sleep safe bed. If anyone knows how to fix it, please send a comment.

On another note, we are pretty convinced Logan is having more seizures. These are differrent from his big full body seizures. He has them constantly throughout the day. They used to seem more like agitation or frustration from oral secretions. His body tenses up, his arms and legs move into a rigid posture and his head turns to the side. Then the secretions start. We have noticed his heart rate increases and his breathing changes during these episodes. I am going to call neurology this week and see if he needs a blood draw to check his seizure medication levels. I am also wondering if the neurologist would want another EEG to see if we are right. We have an appointment with the neurologist in two weeks but I just can't wait any longer. The episodes wipe him out and I'm sure they are distressing to him.  

Other than that we are all doing well. We plan to visit Santa this coming weekend. Every year he comes to the Holiday Inn in our town for breakfast. It is cheap and easy for us to do with Logan. We don't have to wait in long lines at a mall. We get to go at our own pace. I'm also pretty excited for Logan to open his presents this year. I found a couple really good presents this year. The last two years have been difficult for finding presents but this year I'm on my game. I'm even almost done with shopping. I don't know how that happened. Normally I'm scrambling at the last minute. Now on to making a few batches of cookies. Have a great night.