Wednesday, January 30, 2013

Benefit



Eye Doctor

Logan had an eye appointment this week, one of his regularly scheduled doctor visits. Since our neurologists appointment didn't go as well as I had hoped, I braced myself before this one. I was sure the news wasn't going to be great.

This eye exam was different than all his previous (Logan has had a handful of them). That day, he would not look at things he had been interested in the past. The exam room is a long room and at the end of it is a TV screen. Probably 20 feet away from where we sit. They turn on the TV during the exam and an animal comes on making all sorts of noises and movements. On this day, Logan did not look nor pay any attention to the noise. They also put boards in front of him that have black and white lines on them and they move them around. He had no interest in this as well.

The eye doctor came in and then did his exam. He said that things had not really changed. He then looked at some of his previous notes on Logan and then began to tell me some things I had yet to hear. At this point I was a little confused. He said Logan's vision is good when looking at objects within a few feet but that he doesn't see well at distance. He said that is why his eyes drift out. I have been told this is called extropia.

So we have seen Logan's eyes drifting intermittently for a long time. This was nothing new. The doctor had said it did not seem concerning and that they would watch it and that surgery to fix this could be an option. At this visit, surgery did not seem a good option. Why you ask, because unfortunately this lack of vision is not due to a physical abnormality of his eyes. It is due to whatever underlying problem is causing his developmental delays. He said his eyes appear very normal. Surgery would probably only temporarily fix the drifting. He says the eyes drift because he is not able to focus on objects at a distance and strengthen his eyes to keep them midline. When looking at objects that are close, he does not drift as he is able to maintain focus.

Today I received a copy in the mail of the ophthalmologist's report. He sent it to the house so our early intervention team could read and determine if they need to change their strategies. His diagnosis for Logan was cortical visual impairment. Basically this is a problem stemming from the brain, not the eye. From the brain, hmmm. Yet another problem we believe stems from the brain but still cannot be seen by modern technology. Why oh why is this problem so elusive?

Where do we go from here? We continue as we have. We keep objects close to him and don't talk to him from across a room and expect for him to see us. We add this to the list of delays in hopes it will help our geneticist find an answer. And lastly, we carry on.

It made me sad to hear yet another problem exists that handicaps him further. I wish we could fix it. I wish surgery would be the option but why would we put him through that for it to not possibly work. I am constantly waging an inner battle to decide how far we should go. For now, Logan's comfort and happiness are at the forefront. We work to maintain his health and continue on as a family, adjusting as we need to.

It sucks. This battle feels up hill both ways! I am upset right now. Upset that life keeps throwing curve balls at Logan. When will he catch a break? When will the doctors have something positive to say. My heart has been heavy. My worries are increasing. Thoughts of the future are difficult to have. What will be his future? I end this post on a less than positive note but these are my true and honest feelings.

Watch for my next post. Happy news...Lauren and Logan have a new cousin!

Sunday, January 27, 2013

Skills

A question I am asked often by Logan's doctors is... Is he losing skills? This question often haunts me while I am at home watching my child lay around. I say lay around because if no one was there to help him, he would hang out on the floor in the same little area looking to the right as he always does drooling like crazy. I hate being so blunt, but lately, this is the extent of what he does independently. During this time his hands and feet are doing a turning or writhing motion. It is almost like they are moving in sync with one another. Then his arms or legs and sometimes his trunk will join the rhythm.    

That is about how much action we see out of him. A little over a month ago Logan was rolling from his stomach to his back. Where did that skill go? Before the hospital he was holding his head up with us holding around his chest and he seemed to be hitting toys with purpose. Where did that go? I can play this game up until the day he was born.

It seems so cruel. We have had to mourn the loss of the normal developmental milestones. Now we mourn the loss of Logan's own milestones. I have to say, it is like a punch in the gut every time he loses a skill.

We still have yet to find a diagnosis to explain Logan's problems. We have no idea if the loss of skills and progressive worsening of his condition are related to de-conditioning from repeated illnesses or from a degenerative disease.

Despite the lack of answers, we move ahead. We continue therapies and do as much as we can to keep Logan active and stimulated. I have to say it is getting tough to keep the motivation going. It is hard to see his progress and often the lack of progress overshadows any improvements in his development. It is like the dark cloud of winter has taken hold of our home and does not want to let go.

Tomorrow Logan sees the eye doctor and once again I will be asked questions related to Logan's development. Inside I will want to scream at the torture I am put through having to explain where we are at. But instead I will again explain the most recent speed bump in Logan's life. I know the doctors are doing their best. Logan is not an easy case. This post is not meant to blame the doctors for the lack of a diagnosis.

Logan is one of way too many children as well as adults in this world without an official diagnosis to explain their medical and or behavioral differences. Society has become so medically advanced which can be a blessing and a curse. At one time, Logan would have been diagnosed as mentally retarded and that would have been the end of the quest. Nowadays, we have extensive genetic testing that can pinpoint which chromosome or gene is abnormal and then name it. Then, if a person is lucky, there may be a way to cure it.

Ok, so I have gone off on a few tangents here and could probably write for days but I will spare the readers from my ranting!

Logan is losing skills. It makes me mad. It makes my heart break. I pray that he does not understand any of this. We will continue to work at his therapy and provide him with activities that bring him joy. In the meantime I will continue to ask questions and seek out some sort of understanding behind all of this. I may never have an answer, but I don't want to regret not trying. Logan is worth every tear, every growl of frustration, every unanswered question. Because at the end of the day, he falls asleep in my arms with his porcelain skin, warm rosy cheeks, and head resting on my arm without a care in the world. In those moments it is as if nothing else matters.

Saturday, January 19, 2013

Mimi's

Logan had his first social outing today since discharge from the hospital. We went to Mimi's house (my husbands grandmother). Logan did great! No major hiccups and he had some much needed change of scenery. We were joined by Joel's mom, sister, and nephew as well as Lauren. The kids had a great time in Mimi's toy box and Logan seemed content watching them run around. It was nice to be able to catch up with Mimi and have her see the kids. 

Logan has been feeling a little under the weather. We think he has a respiratory virus. He has lots of secretions and they turn yellow at times. Not really what we want to see but the medications we have in our arsenal have been able to keep up well. 

Tonight he passed out during the Gopher vs. Sioux hockey game. Go Gophers! He watched it for quite a while. Hockey seems to be his favorite sport. I am so happy to finally start getting some of our old activities back. We have been so hunkered down at home, worried that any little germ sent Logan's way would put him in the hospital. Knock on wood, so far so good. Plus it isn't as hard to travel as I thought. He is more comfortable in his car seat now and we don't have to haul a bunch of oxygen tanks around! 

Life is good!



Wednesday, January 16, 2013

Inter Ictal

Inter Ictal Spikes...someone please tell me what this means. My mind is swimming with questions.

Logan had a sleep deprived EEG on Tuesday. After about only four hours of sleep the night before, he laid in my arms with electrodes hooked to his head. About an hour later we were sitting in the neurologists office being told that Logan has an abnormal EEG. He is having inter ictal spikes in the right temporal lobe. So from what I understood, he is having abnormal brain activity in the right side of his brain. I am being told it is not a seizure, it is what is seen between seizures. So my next question, is he having seizures. The doctor does not think so and we have not seen any seizure activity since the big one in November. Right now I am so confused!

So apparently Logan may have sustained brain damage from his two hour long seizure in November. At that time he was in what is called status epilepticus. His brain may have been deprived of oxygen during the seizure causing an insult to his brain. The other hypothesis is that his underlying disease process is worsening causing these changes to his brain activity.

How do we find out which may have caused this you ask. Well, an MRI may or may not tell us. It will most likely just give us a new baseline view of his brain, if there are in fact changes that can be seen. What I am saying is, we may never know the culprit.

Where do we go from here? Logan stays on Keppra, the anti seizure medication. We have a rectal medication to give in case he has another seizure so we can stop it in its tracks and avoid it lasting two hours. We have another MRI repeated. And we wait. The hope is that his Keppra will be at a dose that will prevent the onset of a seizure.

I have no idea, but it sure feels like these inter ictal spikes mean he is more susceptible to having a seizure. But what do I know. I have started some research but my brain just can't wrap around this. Does he now have epilepsy? Is he having seizures we don't know about? What is the cause of this change, because the EEG when he was a little under one years old was normal.

I was always worried that his brain would be injured from the November seizure. Is it mothers intuition? We still have no diagnosis. DNA sequencing is still in the works. Results hopefully in May. I was doing so well patiently waiting. Now it feels like the importance of a diagnosis is heightened. At the same time, will it change anything? Most likely not. Logan is who he is and a diagnosis is very unlikely to reverse his symptoms. We are in symptom management and prevention mode.

To top it off we may have a reason for all the tongue biting. The neurologist thinks his chorea, this is a term to describe his abnormal body movements, has moved to his tongue and jaw. We have noticed him rhythmically moving his jaw and tongue but didn't put two and two together. Now it makes sense. We also discussed the possibility that Logan has a decreased sense of pain. This may be why the tongue biting does not bother him and why he grinds his teeth and does not appear to feel pain from this. If Logan has future problems with oral infections we may have to pursue pulling teeth. In the meantime the neurologist is going to start Logan on a medication to lessen the movements. We do not have a prescription yet. He wants to think about what medication he is going to use and let us know. I worry that whatever med it ends up being, will sedate Logan.

We have been working hard to get his strength back and help him continue to learn more skills. I worry that this medication may slow his progress. What a balancing act. How do you treat symptoms, prevent problems, and encourage development when many of the strategies defeat the other. My mind is swimming.

So for now I am going to end this post here. I am still in that phase of raw emotion and searching for answers. Answers may not come so easy so I need to stop this mental roller coaster. At least for now. I will continue to ask questions and research. I am open to information from others who have gone through similar situations. I am also interested in links and articles that would help educate me about the topics of seizures and movement disorders. Email me at rbyrne4@hotmail.com if you have anything.

Another bump in the road...that's okay, we like to drive fast and take chances! So join us along on this crazy ride and see where it continues to take us!

Thursday, January 10, 2013

Video


Here is a short clip of Logan sitting up between the couch cushions. Not a lot of action but you can here my proud momma voice. Oh the places he will go now that he is healthy and on the right track!



Sitting up





Logan had his first home physical therapy visit yesterday. While we are in the prime time germ months, Logan will have all therapy at home. The physical therapist came and Logan slept the whole time. When she went to leave, he woke up. Before she left she whipped Logan into this position on the floor. It is amazing what you can do with couch cushions! I was almost in tears seeing him sitting all by himself. Yes, I know he had the pillows but he did not require one of us. It was so cool. He had a few moments of independence. I can't wait to see where we go from here! Every day he is getting stronger and with all the members of Team Logan, we will get him back on track. 

Tuesday, January 8, 2013

Dentist

Hello friends! I have been away from blogging for a little while. It seems like months since it was Christmas. I think my false sense of time is due to the marathon I have been on. I was so fortunate to be able to take a leave from work while Logan was in the hospital. My leave ended last week so I spent the time between Christmas and my return to work completing various projects at home. The time was also spent training our nursing staff. We have had some growing pains but I think we are figuring it out. Logan has six dedicated nurses who each had to learn his quirks.

I have returned to work. For those of you who don't know, I am an ER nurse and also work as a charge nurse within the department. My leave ended while influenza was taking off in the community. Lets just say that means high volumes and long wait times. People are really getting sick.   I am still nursing a cold myself that has hung on over a week. Word to the wise, WASH YOUR HANDS. Oh, and cover your cough. And while you are at it, don't stick your hands near your face or your eyes. Ok, so I am starting down the path of paranoia. Lets see, where was I?

Oh yeah, back to work. So I have returned. I survived two shifts but barely. My body was tired and my brain was fried but it was like riding a bike again. I also noticed that I felt different. As I sit here I find myself trying to type what that feeling is. I start a sentence but cannot finish it. I just can't seem to put my finger on it. So I sit here and think. Yes, kinda scary!

I guess part of it is that I have now been on the other side. I have been the family member. I have been the helpless person sitting at the bedside. I have been the one asking for answers. I have been the person pleading to god, shedding tears on the bed railing. It feels so fresh and I guess it is. I am okay with that. Yes, I am vulnerable but I hope that my new perspective can enhance the care I provide. We were so fortunate to have been provided such great care and support. To pay it forward is the least I can do.

Now after that therapy session! On to Mr. Logan and his side kick Miss Lauren. The kids are great! Logan is doing well. It has taken some time for him to adjust and he is still trying to get back into a normal sleep routine. His trach has proven to be a good decision. He battled through his firsts cold with no problem. We are so lucky to have such an awesome team at the pulmonologists office. They have us set up with a whole arsenal of medications at home to give in the event he gets sick. He started with a low fever and some yellow secretions and within 24 hours the majority of his symptoms resolved. He did sleep for almost two days straight but perked up nicely. As for the rest of us, the sickness took a greater toll!

Yesterday Logan had his first outing since coming home from the hospital. We went to the dentist! I was nervous, him not so much. Taking him out is no easy task. Equipment must be ready, supplies stocked, batteries charged, and all scenarios must be thought of. At least I try to think of them all! He slept during the entire appointment!

My biggest goal was to find out if there were any options to combat the tongue biting. Logan bites his tongue daily if not more and is actually doing some damage. Unfortunately there is not much we can do. He would most likely not tolerate a bite guard and it would have to be refitted often. Filing down his teeth would not help either. The only other options are to pull teeth, which really is not an option right now or to medicate him when he is having persistent biting. I wish I knew why he did it. We can guess all we want but he can't tell us. If only it was that simple! So we left with a shiny new toothbrush in hand with orders to brush twice a day. Flossing, lucky him, we can wait until his teeth start touching. Lucky duck!

Lauren is awesome. People are always asking how she is doing and I am so thankful for that. She is getting back into her routine with daycare and preschool. She always asks "how many more sleeps until we go to preschool?" I love how she measures time. Today she asked me how long she had to watch a TV show. I gave her some vague answer. She came back and said, "how about fifteen minutes?". Oh how she makes me laugh! She is adjusting well to having the nurses at all hours. She is learning their names. Now we have to work on getting to bed earlier as she keeps wanting to stay up to see who is coming! One thing at a time.

Up next, Logan has a slew of appointments with his doctors next week. I will post after that if not sooner.

Whew, that was a long post. If you stuck it out till the end, thank you! Until next time!