Friday, May 31, 2013

Basal ganglia, what is that anyways?

For those of you that don't know, Logan's salivary gland surgery went well. He went in this past Wednesday and we planned for a couple day stay in the hospital. We ended up home in just over 24 hours. Logan did great. His post op pain was controlled with Tylenol and ultram. He only required one dose of morphine. 

His first night went well and we saw a decrease in his saliva production. Our ENT doctor woke me up at about 6am to see if we wanted to go home that day. I thought I was dreaming. He said he would put together the discharge and if we wanted to stay another night we could. 

I couldn't find any reason to stay. Everything we were getting in the hospital, we could do at home. He was already back to his normal diet and was getting all his medications through his feeding tube. So home we went.

Our home care nurses resumed the schedule that night and allowed me to catch up on a little sleep. Today was a little rough with some restlessness due to pain. We are noticing his oral secretions are much less. It has been hard to evaluate how successful the surgery was due to his pain but I have seen an improvement. 

In a couple of days he should be on the up and up. I am just so thankful we are home. We saw a lot of friendly faces from the pediatric ICU. It was nice to have people that knew Logan and our family. They gave us a very warm welcome. But it was great to leave so quickly. 

I also have news about Logan's MRI and I am still not sure how to process it. I think one of my worst fears came true today but even that I am not sure about. 

I received a surprise phone call from Dr. M, Logan's geneticist. She saw his MRI results today. Not sure if she was flagged by him being at the hospital or because she saw me in the hallway of the hospital but somehow she knew he had the scan. 

His neurologist ordered the scan as a repeat and we had it performed after surgery to minimize the amount of time he has to be sedated. So back to Dr. M, she called today. The news she had was both good and bad. Logan has degenerative changes in the basal ganglia of his brain.

What is the basal ganglia, well it is part of your brain and can be found in the middle or at the base of the brain. This part of the brain is associated with movement. 

Dr. M confirmed it was a degenerative change which is not a good thing. The brain of a two and a half year old should be growing not dying. I said I knew in my heart of hearts that the MRI was going to show degenerative changes. He continues to lose skills and function and has yet to regain many things he once did. To me that spells degeneration.

In our short conversation, she said she wants to look into glutaric acidemia. This is an inherited metabolic disorder. She wants to see Logan on Monday for more urine and blood tests. 

Other than that, our conversation was brief and I was quickly thrown into a tailspin. I wanted to know everything about this metabolic disorder. I quickly learned that this is something that can be  screened in a newborn screening which Logan had and was normal. He has also had the blood and urine tests used to diagnose this disorder and all were normal. A lot of the signs and symptoms do match up to Logan but my brain just can't understand how it would have not been found sooner. I guess some of the pieces aren't fitting together for me. I am wondering if there is more to what she wants to look for and that she may have some other ideas up her sleeve. I have learned that she is one to do her homework and I am confident she is exploring all options

If it is glutaric acidemia, we would be able to use a dietary supplement to slow or stop the progression. I have not read that the supplements would reverse the damage. If this was our answer, what a blessing we would have.

I hate to say it and I hate to doubt something positive in all this, but it just doesn't seem like it could be that easy. I know I am a pessimist, but if I got my hopes up every time a doctor came up with a possible diagnosis, I would be a basket case. Ok, more of a basket case than I am now!

I wish I knew more about this possible diagnosis and the wait is torture. Today was a really hard day. I was torn, do I sit at home on the computer and drive myself crazy or do I get on with my day. Thankfully my little sister was in town and helped me keep busy. Plus I had little down time in the evening between caring for Logan and entertaining friends and family. I am so thankful to have such a great support system even when I turn cranky at the drop of a dime.

Honestly, I am very scared right now. I don't know how to process the results. I only have a sliver of information to go on. Do I get my hopes up or remain pessimistic? I think I will remain guarded with my eyes wide open. My gut has rarely failed me with Logan. I hope this time it is wrong and that we will have an answer to our prayers. 

Wednesday, May 29, 2013

Surgery update



Logan went in for surgery to remove and tie off some of his saliva glands at 11am. Just talked to Dr. S. Logan's surgery went well. We can plan on a few days in the hospital. No complications and he said we should know if the surgery helps decrease his secretions in a day or so. Logan is on his way down to MRI at this time and we should see him some time after 3pm.

Thank you to all of his supporters. These are always tough days for him and even harder on Joel and I. He gets to sleep for it while sit and wait! I say that selfishly but know that when he wakes up, he will be in pain with an IV in his arm and stitches in his mouth. 

Children's Hospital here in Minneapolis always does such a great job and we are so thankful for their dedication to our child.

I have seen some familiar faces today and the anesthesiologist even remembered us. Not sure if that is a good thing! At least they don't run when we come near. Hopefully this will be our last hospital visit for a while. I keep hearing how impressed people are that Logan has remained so healthy since his tracheostomy.

I can't wait to see my baby boy soon. I know he will give me stink eye as I am sure he will be mad at what we did to him. There are a lot of cuddles to be had in the next couple of days! 

Wednesday, May 22, 2013

Logan's Drawing

Logan made this beautiful drawing. Cora, his nurse put a marker in his hand and he went to town. She helped steady his hand so he did not draw on himself and this is what he made. So cool!


Monday, May 20, 2013

T-minus 10 days






In ten days my son will be laying on yet another operating room table. Joel and I will be sitting anxiously in the OR lobby. Why, you ask. To remove some of his salivary glands. We are electing to have the procedure in hopes that we can improve Logan's quality of life. After the surgery he will be whisked away for an MRI of his brain and then admitted to the hospital for a few days.

Because Logan is such a mover and shaker, he has to be sedated for MRI's. We chose to lump the fun together in one day. Why not! A little more anxiety couldn't hurt, right? 

This MRI is a repeat. Logan has had two unremarkable MRI's in the past. Joel and I have decided to diagnose our son with Logan syndrome. Unfortunately that means nothing when it comes to a legitimate diagnosis so his team continues on looking for answers to explain our exceptional son. His brain may still hold the key to what we are searching for, but we have been fooled many times in the past.

Once the roller coaster of surgery and imaging is complete, Logan will spend a few days in the hospital. He will need pain control, prophylactic antibiotics, and TLC. We hope to be home over the weekend. 

I wish these events were not the highlights in Logan's life. I wish explanations of my child's disability didn't have to include a synopsis of his medical chart. I want to be able to talk about his accomplishments, his funny moments, his likes and dislikes, and so on. As of recent I just feel all I can talk about is his disability. These last few months have been great, Logan has remained healthy. Beyond that I only can report slow, snails pace development of my child. He has not regained the head control he once had. He no longer rolls over, but does flip onto his side. If we did nothing to engage him, he would lay in the same area of his blanket as he no longer scoots around on his back like he used to. 

He receives therapy but I feel it mostly does things to prevent complications from his disability such as muscle contractures, hip dysplasia, and pressure sores. This sucks. I tend to torture myself by looking back at old videos and photos to see the things he once did. 

Yes, Debbie downer has now arrived! I don't like sharing these thoughts and concerns as it makes me feel like I am giving up on my child. I am not! But addressing these negative thoughts helps me understand all aspects of being a special needs parent. It also forces me to examine the positives as I am a pros and cons type of person.

So now for the upbeat news, Logan is still the most handsome and loving kiddo ever! His ability to snuggle his head between me cheek and neck while tucking his little hands up to my chest, melts my heart every day. Logan may not talk, but his ability to communicate through touch is like nothing I have ever experienced. Logan sitting in my lap, snuggling is one of the best parts of my day. So away with Debbie downer. This chick has little time for you!

On to our next endeavor in t-minus ten days! 

Wednesday, May 1, 2013

Growing



Today I sat in the kitchen with Logan. Lauren was finishing up dinner. As I held him I was scanning my Facebook page on the iPad. Logan has been a little under the weather since Sunday and is on antibiotic nebs. Today his secretions were constant. As I sat with him, I became increasingly frustrated. He was wiggling and arching his back. It was getting difficult to hold him. At one point I lifted him up as he was sliding down my lap and I thought, "wow he is getting heavy".

He then began sneezing. When this happens he usually thrashes around. This includes arching, flailing, and head banging on top of secretions flying from his trach and mouth, holding of his breath, and some difficulty breathing. As I sat in the chair with him during this episode, I became mad at him. I was having a hard time holding him while suctioning. It wasn't his fault.

After that, we went about our evening as usual. Logan's night nurse arrived and we were sitting chatting about Logan and I mentioned how bad I felt about getting mad at Logan. I then started to cry. At that moment I realized it wasn't Logan I was mad at, it was that he is getting bigger. I don't always look at Logan growing up as an exciting milestone. Don't get me wrong, I want him to grow and thrive but with that comes some major adjustments in our life.

It means my ability to cuddle him will get tougher. For those that do not know us, Logan is a cuddle bug. Snuggling seems to be one thing that can calm him and I know it makes him feel safe. Getting heavier also means we are getting closer to needing equipment to move our child. It means at some point, some of our family members will not be able to pick him up. He will become at greater risk for sores and doing therapy with him will get tougher.

I realize I am focusing on the negative, but too bad. I wouldn't be writing a blog if it was sunny and 75 in our lives every day! This is one example of the stress that I feel taking care of a son with special needs. So today I realized my fears associated with Logan growing up from a baby to a boy. Now I can sit with these feeling for a little while and decide how to move forward.

These moments always blindside me. I am so thankful that I have such a great network of family and friends to keep an eye on me. These ah-ha moments always seem to come to the surface in conversation. I have also learned that I must be honest with myself. Denial is so unhealthy and I don't want to live like that. Ignorance to your own feelings is not bliss, it is toxic. So tonight I mourn the loss once again of a normal child and what it feels like to be excited when your child grows up.

On a happy note...Logan is going to preschool in the fall. We had a meeting with our school district today. Our living room was full of wonderful women, some already on Team Logan and some new to us. We discussed getting Logan in preschool next year! It seems too soon because Logan still feels like my baby boy. By next fall, he will be ready.  He needs the opportunity to be around other kids.

He may be ready but I'm not! With Lauren, I have been with her at preschool once a week. Next year my involvement will be much less. Both my kiddos will be on their own! What is a mom to do then? Hmm, I have a few good ideas!

I know Logan is in good hands. Our ECFE team is top notch. We have great advocates on our team. Another bonus, Logan's home care nurses will accompany him to school. What a relief to know he will have his caregivers at his side.

We took him to story time at the library last week and he seemed to enjoy the outing. He watched the other kids from his wheelchair and had the librarian in the corner of his eye the entire time. We have learned that Logan's cortical visual impairment means that his peripheral vision is better. So it makes sense that he watches people from the corner of his eyes.

I hope to bring Logan to story time as much as possible. He really seemed to enjoy it. I have so many ideas for activities and I can't wait to share our journeys with Logan this Spring and Summer. That is, if we ever have either one. I think it is probably snowing outside as I write this post on May 1st. This Minnesota weather is totally bananas!

Thanks again for listening. I hope my next post brings a more sunshine and 75 vibe!