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.

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? 

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! 

Things keep changing

I'm struggling to find the right words to begin this post. I have wanted to blog and I think about writing something every day but I don't. It is easier to think about it and make an excuse not to than to complete the task. I have a feeling I have been postponing as I am again in a period of unrest. 

Logan is fine. He has been sick a few times since September but nothing we couldn't manage. He is in preschool three days a week. Still, good things to report. 

But as he and our family proceed day by day I see my son declining. He hardly moves. He is distant. He is weak. His eyes do not sparkle. Even simple enjoyment of a favorite show or movie do nothing for him. He stares off into space. What he thinks about, I will never know. 

My gut says this is his degenerative disease is rearing it's ugly head. It could be the medications he is on, but I don't buy that. I feel like he is slipping away but so slowly that it is like torture. He is gaining weight and most people would praise that. I do not. He used to move so much and burn so many calories that we could barely get him to gain an ounce. Now he is overweight as he has little physical strength to burn the calories we give him. 

These days we have to give complete support to his body as he has no ability to hold up his head or control his extremities. I'm not saying that he doesn't move at all because he does. His hands writhe a little and he moves his feet. He will arch his back and throw his head back contorting his body. We think he does this when he is upset or can't swallow his oral secretions. Sometimes it looks like a seizure. Other than that, he lays there. 

It makes me sad. Is he enjoying life at all? Is he sad? Or does he even understand what is happening? 

What I do know is that he still responds to my voice and my comfort. He still snuggles with me and closes his eyes when I hold him close. When I kiss his face he sometimes winces like a little boy trying to say "stop kissing me mom"! He listens when I sing to him but I think he prefers his Grandma Cindy's singing better! His face is that of an angel and the feel of his skin is smooth as silk. 

I end this post here as I have run out of words to say other than, thank you a million times over to all of you who pray and send positive thoughts our way. I promise my next posts will be more exciting and fun!

Logan's 4th Birthday

Today we celebrated Logan's 4th birthday. It is Wednesday so our celebration was small (Joel, Lauren, myself, and Logan's nurse Cyndy). Lauren bought Logan a big writing tablet that he can play with. He does well with arts and crafts with our help and Lauren really enjoys showing him how to do it. 

We gave Logan his big birthday present last Saturday. I found a bean bag chair (actually made from foam) online. It came in a pretty small box but by the time it was opened it ended up being the size of a small love seat! So far we have found it useful though. It was made so that a person can sit up in it. My hope was to find something more like a chair so he could feel more included in family activities in the house. Right now we have a very plush mattress like area in the living room but it does not allow him to sit up. The other advantage of his new chair is that we can sit with him. Lauren, Logan and I all fit together which works great for reading books. Honestly Logan is impossible to shop for. Traditional toys don't work but with a little creativity we have seemed to find things that work. 

All evening Logan played possum. Whenever we tried to do something he fell asleep. I have a feeling he was pretty tuckered out from school today. He has been out of school for a handful of days while he was fighting a cold bug. We did finally get him to stay awake long enough to let us sing happy birthday. Lauren picked out cupcakes and we put candles in one and she helped him blow them out.

We spent the last part of the evening talking to family via FaceTime. It is always so fun to be able to share these moments over a video feed! And to end the night, I sat in his new chair and cuddled with him. He was out cold but I still reminisced about the day he was born...

It was a sunny day and not too cool. We went to the hospital on Sunday afternoon to be induced. We arrived around one in the afternoon. By the time we were checked in it was after 2:00pm before the pitocin (medication used to induce labor) had been started. I remember hanging out in the room thinking how hungry I was and wondering why I hadn't eaten more that morning. 

We were only a few days overdue but our OB was working that weekend so we decided to help things along knowing we had her there. She was also there to deliver Lauren (not a planned delivery date). During both pregnancies I only saw Dr. P or the nurse practitioner. I was too weirded out by having a handful of other doctors involved and potentially being part of intimate parts of my prenatal care. Yes, silly I know but I needed that trust and stability. 

Anyways back to the story. I continued telling Logan about the day he was born and don't forget he was snoozing. I didn't care! We went through the afternoon and early evening with the induction. My OB broke my water around 5pm as things were progressing well. I remember her leaving and the contractions coming like a tsunami. It was overwhelming to say the least. The nurse queued into this and called the anesesthesiologist to see about an epidural. Nope, not possible, they wanted me to have more IV fluids. I remember seeing her next to the bed squeezing the bag trying to get fluids in faster. At that moment I was gripping the side rail so hard I probably left permanent finger prints.

Looking back it was pretty dramatic! I lost all control and quickly had an overwhelming sense to push. Next thing I knew, the room was transformed, nurses were running around and were trying to find the OB. I remember rolling to my back and seeing about three nurses at my feet and I was pushing. No doctor yet! There was no stopping it. Logan was coming and that was the way it was going to be. I even remember the anesthesiologist walking in shortly before Logan was born to see about an epidural. He is lucky I was too busy at the moment or I may have rung his neck.

Next thing I knew, Dr. P was there and ten minutes later so was Logan! It is amazing how much faster you get a baby out when you feel every bit of it! Logan didn't cry when he came out and I freaked out. At some point he did cry and it was a huge relief. His agar scores were fine but I was so worried that he didn't cry. Looking back I wonder if that was the first moment I recognized something was different with Logan. His nose was smushed! I remember Joel telling me that! It made us all laugh. Joel is so good at bringing humor to a stressful situation. 

I remember his first bath and sitting with him alone in the room that night. I held him to my chest. He was so tiny but had incredibly long fingers and toes. I will never forget him up against my chest in that moment and him pushing his feet off of my thigh and holding his head off my shoulder. The nurse even mentioned how strong he was. 

Well over the last four years we have seen that physical strength deteriorate. It is heart breaking to think back on the way he once was but it helps remind me why he is still here with us today. His determination is not just physical but also mental. He is stubborn and has always found ways to make sure he is heard. Whether it is him smacking someone in the face or pulling a full on panic attack, Logan gets his point across. He is so very amazing. I can't say enough how proud we are of him. He overcomes so much every day. 

Logan, happy birthday! You are my angel on earth. I am so lucky to be your mom and to have been able to spend another fabulous year with you. I can't wait to see where this one takes us! 

Genetics Update

I heard from the metabolic specialist who saw Logan a handful of months ago. He did a urine test that came back normal and has further discussed Logan's case with the genetics team at Children's. Apparently the Exome sequencing done a long time ago showed that Logan and I both have a genetic mutation on the HUWE1 gene. Apparently this is an X-linked issue.

I am not the smartest when it comes to understanding how this all works but from what I figured out, I am a carrier of the mutation. I don't express it. A woman has two X chromosomes and a male has one. Apparently this puts the male at a disadvantage because their chances are higher to actually have the genetic problem. 

I have never claimed to be an expert on this topic, I only write to the best of my knowledge! So basically the doctor wants to send us to the next level, the National Institutes of Health's Undiagnosed Disease Clinic. I will not go into grat detail as it is on google. Basically it is a high level program that only chooses a certain amount of cases per year to look at. I am hoping Logan is one of those cases. I have researched the NIH's program in the past and always thought if we got to this point I may advocate to have one of Logan's doctors help us apply to the program.

Well we are at that point at the recommendation of the specialist. This gene that was found may not actually be our answer but it is really all we have to go on at this point. I wish answers would have come sooner and with less of a financial, emotional, and physical toll on Logan and our family. I debate whether it is worth pushing forward. Honestly an answer won't change Logan's prognosis. What will it do for future generations, I don't know. What will the pursuit of answers do for science or for other families, I don't know, 

So hopefully we will hear back from the NIH in October. I don't want to hold my breathe but I know it will be on my mind every day. It is torture to think something from inside you passed to your offspring and caused such havoc. I know this is way, way, way beyond human control but that doesn't stop the feeling of guilt. If I didn't feel bad then someone should be worried about me! 

In the meantime, Logan is finally getting over a cold. Lauren had it for about 24 hours and he battled it 7 days. He had a fever, was on and off oxygen, had tons of yucky secretions, and was unable to sleep. Tonight I came home from work and the sparkle was back in his eyes! Yay! He may not speak but the story on his face tells it all. I'm so glad this illness was low on the crisis scale. His symptoms were very manageable at home. I think he is going back to pre-school next week. He needs to be with his teachers and friends! 

Tomorrow Logan has a check up with the pulmonologist. I always enjoy visiting with Dr. K. I have a few big questions to ask and hopefully won't turn into a blubbering idiot! For me it is important to have a game plan for the future. Part of that game plan is the oh Sh** plan. I won't elaborate too much as many readers will get my drift. 

It is very important that I plan for the what if's. I mean come on, I'm an ER nurse who is trained to think worst case scenario. I truly believed that mindset is what helped me when Logan had his horrendous seizure and stopped breathing. I was ready. I had ran similar scenarios in my head a million times and when push came to shove I did it. I helped save his life. So to me, it is important to be ready for the next what if. I don't want to be stuck making a last second decision because I put off thinking about it because it was too painful or scary. I'm sorry but that ain't gonna fly in an emergency and it sure isn't what Logan deserves. 

So on we go as usual with bumps in the road as expected. I will post as soon as I hear back from the NIH but I will hopefully post on something else sooner.....

Mr. Logan turns four on October 22nd! Whoo hoo! I can't wait! Every birthday is such a blessing and an extremely major milestone! So until then my friends! 

Communicable Diseases

This time of year, my stress levels increase as flu season approaches. Over the past few days the stress has turned to mild panic. I keep hearing about a respiratory virus called enterovirus. I have read that it is hitting the Midwest and causing kids to have some pretty severe responses. Most cases seem to be in children who are immune compromised or have an underlying medical condition. Well ladies and gentlemen, that's Logan. 

Now he and Lauren are in school. Joel works at a school and I'm an ER nurse. We sound like a bad Petri dish of germs waiting to happen. To top it off, we also have almost 10 nurses in and out of our house. I'd say we all have decent hygiene but that's doesn't feel like enough.

I'm so scared to even touch or kiss Logan. Now I'm worried about sending him to school. (Sarah, I left you a voicemail) If he became sick with this virus, I worry he wouldn't be strong enough to fight it. If he required ventilatory support, would we be able to get him off it? 

These are all questions Joel and I toss around in our heads as we worry about Logan getting sick all the time. Now it feels a little more worrisome especially when there are so many other bugs out there right now. We know the big bad respiratory illness that landed Logan in the hospital for a month and a half a few years ago was a virus, parainfluenza. We were told that during that winter that parainfluenza was hitting kids like Logan harder than usual.

Sounds too similar to what we are hearing now. I know we will be faced with some big decisions about Logan's future someday, just praying no sooner than it has to be. So for now, I will probably keep panicking. It's my job as a mom! I have some calls to make tossed about school options and maybe a call to the pulmonologist to make sure I'm not going overboard! 

We appreciate all the continued support of Logan. We love to hear that so many pray for him and keep him in their thoughts! P.S. Please cover your cough and wash your hands (just had to throw in the PSA!)

All the best,

Rachel

Logan's Make a Wish celebration photos

Logan had his Make a Wish celebration in July. It was such a blast! Our wish granters Barb and Donna planned a blowout bash. It was carnival themed and had everything we asked for and more. It was beyond what we would have ever expected. 100 of our family and friends attended to help Logan party and I think everyone had a great time. The pictures tell it all. 

Thank you again a million times over to Barb, Donna, and the Make a Wish Foundation. We are so blessed to have been given this opportunity. 

Thank you to all the volunteers and vendors  that made Logan's special day happen:

Liv H 

Jayne B 

Kelly C 

Andrew S 

Olivia M 

Alex M 

Jennifer M 

Brenda S

Amber S 

Debbie C 

Kyle G 

Lyn O 

Abbey O 

Sabrina O 

Photo Booth Creations (Stacy)

TD Happy Faces (Face Painter "TaDa"  & "Pickles" the clown

 
Steve aka "Mr. Fun"
 
Mandona Moshrefzadah  

 
Hasse Family (Petting Zoo)
 
Jill (DJ)
Adagio Entertainment
 
Elk River Park & Recreation