Tuesday, December 9, 2014


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!  

Sunday, December 7, 2014


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.

Thursday, November 20, 2014

Winter has arrived

One of my most recent posts was an emotional one! I tend to do that! I build up the emotions and then let it all hang out in a blog post. The release does feel great but sometimes comes with regret. I know, it is silly to feel bad for being honest! 

Sometimes I feel like I go too far. Well, I'm sick of feeling that way. I have had the great fortune to be part of an amazing resilience program at work. I have learned some awesome techniques to manage stress at work and have also transferred that to my home life. I have been very intentional with my goals and have completed many of them. It feels great to shift my priorities! I plan to keep building on my successes and want to keep the momentum. It feels great to take control of my well being. 

Logan is doing well. Preschool has been going very well this year. The nurses say that he stays awake most of the time at school. I really enjoy seeing his artwork and hearing about his interactions with classmates and what's books are his current favorites. We had his wheelchair adjusted. Logan is 45lbs. He is a BIG boy! He is also on a diet. We have him on new formula that is made from real food. He did have an episode of vomit but since then no issues. We are going to stop advancing his volume as he is meeting enough calories. We don't need to push his tummy any further at this point. True aspiration could be a respiratory disaster for Logan. Best to stay conservative. 

Tomorrow we meet with his county case manager. It is time to discuss home and vehicle modification. It is very difficult to bathe him so a lift system and a new bath tub are needed. He is also quickly outgrowing his car seat. We may have to look at a lift on the van for his wheelchair. He would then stay in his chair and that would be anchored to the floor as we drive. I am a little nervous that our van is a year or two past the age limit of a van for MA to cover. 

These topics stress me out as I worry about the financial impact. I have been trying to put that aside until I know what can or cannot be done. Our house is tough being a multi level home but I think we have some good ideas and options to give him a home that accommodates his needs. 

I have to touch base with genetics soon. They were going to see if the National Institutes of Health's Undiagnosed Disease Clinic would be interested in his case. Honestly a diagnosis has not been high on my list of priorities. It would be nice but not completely necessary. We will see if the door is open or shut to that possibility. 

In the meantime we are in an early winter freeze here in Minnesota. The ground is already covered with snow and the temps are in the teens. The annual freeze in has already begun. I have a feeling Lauren is going to feel couped up one of these days. Thank goodness for swimming. She is doing great learning to hold her breathe under water and learning the basic strokes. I am amazed how the instructors can push the kids out to swim and they just do it! 

She is also a great student. She loves to learn and show off her talents. I enjoy homework time! She is such a sponge these days. So much of one that I may need to make a swear jar. Mommy has rubbed off on her a little bit! I have a feeling my bank account will deplete quickly if I don't clean up my act! 

Here are some recent photos. Hope you enjoy as much as we do in these simple moments? 

Tuesday, November 11, 2014

Puke and earache

We had a little hiccup with Logan tonight. He is on a new low calorie diet which involves a new formula. This new formula is made from real food but requires him to get larger volumes at a time. His nurses have been slowly increasing the volume every two days. Tonight he had a sneezing fit and vomited. This wouldn't be a big deal except that he had a procedure last spring called a Nissan Fundoplication that was done to prevent Logan from refluxing and vomiting so we could feed him into his stomach verses further into the GI track as we had been. 

The nurse caught it as it happened and suctioned most of it before it hopefully could have been aspirated into his lungs. Before Logan's trach, he had frequent hospitalizations due to aspiration pneumonia. We have worked very hard to prevent this post trach and have been successful. 

I will be in touch with GI tomorrow to see if we should slow down his feedings and allow his tummy more time to stretch. I'm praying that his tummy surgery remains as is and that he was just pushed a little too hard, too fast. Poor bubba! 

On a funny note, at least I think it's funny but I'm sure he is mortified...we are trialing new big boy diapers. He has outgrown the store bought sizes. The medical supply company sent out samples and it has been comical. You should see how big they are! His crotch is only so wide! It looks like a big lump between his legs. There is one type that will work ok. It's still bulky but we only get so many options. I wish they made better diapers for toddler/youth kiddos like Logan. Fun colors or logos would make it a little easier. It would be great if they looked a little more like underwear. I'm just sayin! 

I know my last post was pretty emotional. Thank you to all that commented, texted, and asked how things are going. This journey is a roller coaster ride! I appreciate when others take time out of their day to check in and pass on words of encouragement. You are all The Best!! 

Now I am putting my attention to miss Lauren as she battles an earache tonight. I lay next to her as she snores and dreams out loud. She has been up on and off a few times. I'm hoping the ear drops I snuck in do the trick! She truly is a trooper when it comes to being sick. She downplays everything and most of the time we don't realize she is sick until she has a raging fever or is puking. She is such a rock!