Not feeling well

Tonight I lay my head down for bed and inside I am a paranoid, freaked out mommy. Logan started getting sick this afternoon. The secretions from his trach are yellow and thick. He is lethargic. This evening he had the start of a fever. When he begins to get sick like this we hit him hard with meds. This includes a nebulized (inhaled) antibiotic, steroids, and bronchodilators to open up his airways.

When he gets sick, I worry about all the things that could happen. I know what it was like for Logan to be sick previous to the trach. I was good at knowing sick vs. not so sick. The trach now adds a few more variables. By having a trach and being a child with a weak cough, Logan is at risk for mucous plugs. It is just as it sounds, a plug of mucous in his airway. This can be life threatening if not dealt with quickly.

Most likely this is a trach related infection that is generally isolated to that area. My biggest worry is that he could then develop a pneumonia. A small trach infection can lead into a cascade of events. Fever and lethargy mean weakness, which means less movement of secretions up and out of the airway. This turns into pooling of secretions in the lungs which can turn into infection.

We all know where pneumonia takes Logan...and I don't even want to mention that place. I debated packing a bag tonight but did not, knowing he is in the hands of an amazing nurse. Our night nurse will stay on top of things and do everything she can to keep Logan moving in the right direction. We are so lucky to have nursing services for Logan and I often feel guilty.

I read blogs and Facebook pages of many special needs families and realize that not all situations are equal. There are kids out there that require more care than Logan who have little to no nursing services. Many insurance plans do not cover private duty nursing. Ours only covered three months of nursing care for the year. Someone please explain to me how a family can be expected to pay the rest out of pocket. Instead, families go without and in turn they suffer. It isn't hard raising a special needs child if that is all a parent does but we know it takes much more to keep a family unit functioning.

Now I am fired up. This topic always gets me going and I could probably write for days. I hate to get opinionated or political as this is not my strong suit. Most likely because I feel out of my comfort zone making generalizations for others without solid data to back it up. But trust me, the data could be found and I could make a pretty good argument!

Now back to the topic...this guilty, paranoid, worried, freaked out mom (who is now fired up) is going to attempt a good night sleep. Logan is in good hands. These situations always have my gut instinct questioning itself. What is a girl to do when her own north star is out of whack? I have learned that these are the times when Logan shows me the way. He is sailing the ship and will tell us what he needs, we just have to watch for his cues. Please send some warm hugs Logan's way as he could use a boost to sail through.

Secretions

Logan saw the ENT doctor today. It was a follow up appointment since his tracheostomy was placed. I always look forward to meeting with Dr. S as I feel he is honest and only wants what is best for Logan. He is a man with a plan and he doesn't hesitate to tell you what's up. This isn't his first rodeo (thank god!).

We spent the majority of the appointment discussing Logan's ever overflowing gift of secretions. My kid probably makes more saliva than a bulldog. Now that the trach is healed and working so well for Logan, we must tackle the secretion issue.

His trach has a cuff. This means there is a balloon around the trach tube that we inflate with water. By doing this, we partially occlude the airway. Normally a cuffed trach is used for a client on a ventilator. Logan is not. The reason for his cuff, slow the passage of secretions into his lungs. This comes with a list of potential problems with irritation or erosion of the trachea being one of the worst.  So we watch it like a hawk and do not inflate the cuff completely.

Dr. S has asked that we deflate the cuff just during the day to see what happens with his secretions. If I understood correctly, he wants to see if the cuff was placing too much pressure on the trachea and then in turn, pushing the esophagus. This could have been occluding the esophagus preventing secretions from passing into the stomach and therefore spilling into the lungs.

I see this as possible but don't feel this will be our answer. I think we are dealing with a child with a movement disorder that produces an abundance of saliva because of the constant movements of his tongue and jaw. We then throw in some type of neuromuscular disorder that causes the inability to swallow properly and end up with lungs full of saliva.

We will give this non invasive attempt a try for a week or so. I am game as this is an easy experiment. I do worry that we are opening up the flood gates and now placing Logan at risk for aspiration pneumonia. Thankfully we have nurses to help us watch him like a hawk.

If this plan does not work, we will move to having some of Logan's salivary glands removed. This was originally planned last November but was scratched when we went straight to the trach instead. For now, we will watch closely and I will attempt to not be overwhelmed with worry... Too late but that's okay. If I didn't worry, we would have a problem. So ahead we go with the plan of attack and no looking back. Just another speed bump on the racetrack of Logan's life. Hang on tight!

Appointments galore

 

 

We have been on the post benefit high for the past two weeks. Life has been great. We feel so blessed to have received the enourmous amount of support from our friends, family, and community. For those interested...we still have Team Logan t-shirts and wrist bands. We are selling them for $5.00 a pair. Email me at rbyrne4@hotmail.com if you are interested.

Now back to Logan updating. All in all, Logan has been doing great. He is healthy and seems to be in a great groove right now. He has had a few doctors appointments over the past couple of weeks with a couple of adjustments, mostly to medications.

He has remained on the Sinemet. This is the medication we are using to try and slow down his excessive movements. We have increased the dose twice with no change. We have also placed him on a medication to help him sleep at night.

I thought long and hard before asking his doctor for a sleep aide. Logan does not sleep well at night. We have been trying melatonin and the nurses have been working really hard to stay on top of his secretions so he does not wake up. Unfortunately everything we try is unsuccessful.

A normal night's sleep for Logan is: to bed at 8:30pm, awake between 10:30 and 12:30, back to sleep after some restlesness until between 2:30 and 4:30 when he can be up and down for a couple of hours. He will then sleep in until about 8:00am if it was a rough night. Most of his problems during sleep are startling awake and waking due to secretions in his trach. It is so frustrating. He is two years old and needs sleep. We all need sleep. How would we thrive and stay healthy if we didn't.

So I decided to ask his neurologist for help and he offered to prescribe clonazepam. This is an anti-anxiety/muscle relaxing medication. We pray this will work. Hopefully we will see a more rested child during the day that is more interested in interacting with us.

Logan has an MRI set up the first week of April. This is a hard test for me as he has to be sedated which brings its own list of worries, much less now that he has a tracheostomy. He has a permanent airway and does not require intubation for procedures. It is pretty slick!

I also worry what the results will bring. Each time he has a test it is never easy. We wait for results and almost every time we are told that everything appears normal. I don't want abnormal test results, but at the same time, want some clues to shed light on what is causing our child's delays. I just want an answer.

He also saw the physiatrist. This is the doctor that watches over his physical development. He had an xray of his hips and they look great. No problems with where the ball and socket meet together. Everything is aligned well. This needs to be monitored as Logan is still not weight bearing for the most part so he is more likely to have hip problems.

The rest of his body is developing well in general and I say this as comparison to Logan's own growth chart. He is on a path of his own and he continues to gain weight and grow taller as the days pass. He is also starting to gain strength and endurance. He did get fitted for AFO's (ankle, foot, orthotics). These will go from just under the foot, wrap up under the heel and up the back of the calf. The braces will be used when we are working on standing exercises for Logan.

I spoke with the genetic counselor this week to get an update on Logan's DNA testing that is in progress. He is having exome sequencing performed that will look at thousands of genetic abnormalities that are known to science. If you would like a better understanding of this, visit http://ambrygen.com/exome-sequencing. This is the lab performing the test. We were expecting the first round of results in May. We had sent the blood samples last October. I am being told that we will experience a delay due to the high demand of this newer frontier of genetic testing. It is frustrating but this isn't our first rodeo!

Last of the big appointments will be Mayo Clinic in May. He will see the pediatric neurologist that we saw when he was about nine months old. Our neurologist would like us to see her as he feels she is the specialist to help us evaluate and treat his movement disorder.

This spring will be busy and we can't wait! It means Logan will be able to go on walks, go to the park, and smell the roses! Maybe some day trips to visit family. I have high hopes for this spring and know that we will spend as much time as possible exploring with Logan.

Benefit

This past Saturday, March 2nd marked a big day in our lives. Our friend Carmen, put on a benefit for Logan. This event has been in the works since Logan was in the hospital November thru December. During that time, Carmen came to us and offered to put on a benefit for Logan.

It was very hard for Joel and I to accept the help. I personally did not feel we were deserving of such a gesture. We should be pulling ourselves up by our bootstraps and taking care of our child's needs. We quickly learned that our stubborn ways of doing it all ourselves was not going to hold up forever.

We needed help. During the big hospital stay, Joel and I were taught by many kind friends and family that it is okay to receive help. It is not a sign of weakness. And I have to say, accepting the help took a lot of the weight off our shoulders.

Now back to Carmen. She offered to put on a benefit. Before Logan was even out of the hospital, she had many important tasks complete. After he left the hospital, we set a date and Carmen went into superwoman mode! She mobilized Team Logan, obtained donation after donation, and took time from her busy life as a wife, mother, and nurse practitioner. These were only a few examples. I will never know how much she really did because she allowed me to just be Logan's mom. We touched base from time to time, but I was really just a spectator to it all. I am so grateful she allowed me to sit in coach for this one. Life after Logan's tracheostomy has had it's share of difficulties so I was able to remain focused on Logan's needs.

We arrived to the benefit shortly after it began. Joel had gone early to set up. I walked in with my mom, Lauren, niece Madelyn, Nurse Kimberly, and Logan. Logan was passed out in Kimberly's arms. As we walked in, a flood of emotions came over me. We walked into this huge room (part of Carmen's church) that was bustling with activity. There were booths, games, a bouncy house, food, silent auction, raffle table, and the list goes on. At each station were volunteers. On our arrival the turnout was already incredible. Everyone was smiling and you could just feel the excitement in the air.

I had a hard time holding back the tears. It was so overwhelming. I felt so proud to be Logan's mom. This child of mine is incredible. Only two years old and he is bringing people together in ways we never would have expected. So I cried. And it felt good.

The next few hours seem a blur. We saw so many friendly faces and met many new Team Logan supporters. Logan was a champ through the whole thing. He must have known it was a big day because his tracheostomy and oral secretions were so well controlled. He was on his best behavior!

I wish I knew what he thought of it all. I am sure he was curious why all these different people kept coming up to see him. He was so calm and just watched it all with his intense brown eyes. My favorite interactions of Logan's were with other children. It amazes me how curious and concerned other kids are of Logan. It is always refreshing to have a conversation with a kiddo because it is so cut and dry. They ask why he has a trach or why he is in a wheelchair. I give a quick explanation and on they go about their business.

So the benefit began to wrap up. Kids were tired and adults were waiting patiently to see if they won an awesome auction item. It then came time for some announcements. Carmen brought our family up front and said such kind words. I, was a blubbering fool. Standing up there and looking across the crowd of people was surreal. They were all there to support Logan and our family. How did we get so lucky? What did we ever do to deserve such kind acts by so many?

Immediately after the gathering I had a pit in my stomach. I realized I didn't speak. I was so emotional and felt like a puddle of jello. I wanted so much to have thanked Carmen and all of the supporters. So here I am, now with my wits about me to say thank you. I hope many that attended and donated can read this as this is what I wanted to say!

Carmen, Thank you from the bottom of our hearts. 

Your kindness and generosity will be forever in our memories 

We don't know how we could ever pay you back for this incredible gift

You are an angel on earth, brought to our lives for a reason

I will never forget the day you stood in Logan's hospital room and said you felt led to do this for him

You are a leader who has a gift

You have the ability to share your enthusiasm and love with so many without hesitation

Your selflessness is contagious 

Carmen, I hope you are prepared, because now you are stuck with us and I hope we will be lifelong friends!

 A huge thanks to your husband Brian and your boys. 

They shared you with us these past few months and for that we are forever grateful

I wish I could thank each individual who helped in one way or another

I hope you all know how thankful we are for the donations of time, money, supplies, and food
The money raised during this benefit is an example of the incredible support of our Team Logan community

We are also thankful for the continued prayers for Logan
The road ahead is full of great unknowns
To have such a bountiful network of support is uplifting
We are not alone on this journey
Logan is not alone
He is carried through prayer and love each and every day by the support of those his life has touched

Thank you Carmen
Thank you Team Logan

With great love and gratitude,
The Zacher's

Benefit Photos

 

TEAM LOGAN BENEFIT

2013

 

To follow are some of the photos taken at the Team Logan benefit this past Saturday. The benefit was a huge success and raised a substantial amount of funds for our son Logan.

 

 

 

Here I am, Super Logan!

 

 

Aunt Jeni, Mimi (Great Grandma), & Mavis

 

Mommy, Logan, and Kim

 

Mimi, Auntie Doris, Mavis, Aunt Cheryl, and Grandma Cindy

 

Lauren had a basket bidded on by Mavis' Sister

The Bouncy House was a hit!

 

 

We still have Team Logan t-shirts if you want one!

 

Logan's first nurse ever, Bonnie! We miss her!

 

Cousin Ty

 

The end of the day! What a cuddly little boy!