Saturday, June 29, 2013

Mayo Clinic

Joel, myself, Lauren, Logan, and Nurse Brenda loaded into the van this past Wednesday and headed down to Mayo Clinic in Rochester, Minnesota to see a neurologist. We saw this same doctor two years ago after being referred by our primary neurologist. Originally we scheduled this appointment to discuss treatment options for Logan's abnormal movements.

This appointment was made months ago before the MRI that will forever change our world. This visit then morphed into a bit more as the MRI indicating brain degeneration was placed in front of this doctor. The appointment seemed to last forever but I know it was quick. I could tell the doctor was in a hurry but wanted to spend adequate time with us and answer all of our questions.

We discussed Logan's medical history and all the changes since she last saw him. That part always seems to take forever as there have been so many changes. The rest of the appointment was all over the place in my mind but I think it was more from feeling overwhelmed.

We talked about what testing has been done and what is pending. She didn't quite agree with the path of Exome sequencing as she feels that may miss variations in the genes that occur. She was frustrated because she thought our geneticist was going to perform some more mitochondrial testing. I think there may have been a miscommunication between the two of them as I was under the impression that genetics was going to perform their testing and if all came back negative we would go back to Mayo for more tests.

I had to quickly put this aside in my mind and stick to the questions I needed answering. Those logistics and missed opportunities can't be dwelled on as it is in the past. We discussed the possibility of Logan having a mitochondrial disorder. She feels we have a 1 in 4 chance of having another child with the same undiagnosed disorder. I appreciate that she had the balls to say this to us as no one had done so before. It has always been a concern in our minds and to know the possibilities (not an absolute) we are now able to make more informed decisions about our future. Maybe no more babies from my womb but there are other ways to have children! I say that knowing that we are truly done. We are lucky to have Lauren and Logan and that is enough for us. Don't get me wrong, it was still gut wrenching to hear this out loud. I felt as though my uterus shriveled up and died in that moment! Dramatic, I know but I can't help it.

After that hurdle we went back to mitochondrial talk. She talked about how he had previously had a mutation found in his mitochondria two year ago. She said the lab that performed the test could not determine if this was significant and thus wanted to test me. I am learning that mitochondrial disorders are passed from the mother. This mitochondrial stuff has nothing to do with sperm! Whatever! Do the mom's have to do everything including pass on life threatening illnesses? Come on, that's just not fair.

Anyways, she said they had called my insurance company, Health Partners who denied covering me for this test. It would cost about $700.00 per this doctor. All information I was not aware of until yesterday. Come on people, this would have been nice to know as I felt mitochondrial was significant early on. There were many mitochondrial disorders that seemed to fit Logan's symptoms and still do. Two years ago I was convinced it was mitochondrial and had allowed myself to move away from this possibility as we saw more doctors that led us down different paths.

So we sat at this appointment and I felt that more uncertainty was placed in our laps. Were we on the right path? I was feeling as though I should have went with my gut so many times over the past couple of years. I had wanted to go back to Mayo but felt that we were being sent elsewhere for a good reason. Our geneticist is amazing and she has gone to great lengths to help us on the diagnosis quest. I don't think she would ever lead us astray, she only was doing what she thought was best. I mean obviously Logan has stumped a few doctors, oh wait, every doctor he has ever seen. So I am really working hard to not dwell on the shoulda coulda woulda's. At this point, a diagnosis would not fix Logan.

Now back to what is going wrong in his brain. The Mayo doctor agreed that Logan will continue to have functional decline. He will lose skills, his tolerance of activities will decline, and his ability to fight off illness may become impaired. Beyond that, we have nothing more. No idea how it will go or how much time we have with Bubba.

Lastly, she is going to consult with a colleague who specializes in movement disorders and see if he can recommend any treatment options for Logan's abnormal movements. When Logan is awake, his hands and feet writhe and his arms and legs flail. His face seems to constantly be moving including his jaw. He looks uncomfortable and frustrated especially when the movements are worse. Thankfully they do stop when he sleeps.

I think I have covered the highlights of the appointment. I am still piecing it together in my own mind. It was one of the toughest weeks of my life. I went on a whirlwind vacation last weekend. Came home and jumped right back into mom mode. We saw palliative care on Monday. Had a visit with our case manager Tuesday and then saw speech therapy to evaluate if Logan should pursue this again. We went to Mayo Wednesday and had a visit from our physical therapist on Thursday. Friday came and I was fried head to toe, inside and out!

As I drove to work I saw a missed call on my phone. It was Logan's primary neurologist checking in. He asked me to call back. I did and he answered the phone right away. I was impressed. He asked how our visit with Mayo went and how things were going. He knew we had a tough week. He was very kind and spent a good amount of time on the phone. We discussed how Logan's MRI has degenerative changes and that his future cannot be predicted. He said if we had a diagnosis we may be able to have some idea of how things will go. For now, we are blind to what the future holds. He said this cannot be fixed. I asked what he would recommend for Logan's future in regards to activities and therapy. He said to not restrict him and to follow his lead. If he is tired, then stop. He did not feel activities such as therapies would worsen his status, he encouraged it. Whew! That was good to hear.

It felt like he said he was sorry a million times. I have heard a lot of people say how annoying that is. I guess I don't feel that way. I am sorry too, and guess what, I am glad other people are because this sucks. So the conversation came to an end. I was very appreciative of his time and honesty. He is going to work on getting us in to be seen in the next couple of weeks once we have the Mayo recommendations. Honestly, I could care less if we went to another appointment with anyone right now. I am exhausted. There has been so much to process and this is just the tip of the iceberg. Joel and I have just scratched the tip of the surface and have so much more to talk about. We have a lot of tough and unfair decisions to make in the future.

So I sit here wanting to write for days. Wanting to spill my guts but it is too painful right now. I am tired of crying and I don't want to be the victim of an unfair roll of the dice. We are still living and we have to live it with all we've got. But honestly, there have been more days where it seems easier to be on autopilot then to choose more. My house is a mess, I am behind on more than I can put on a list. What a funk. I know it will get better but right now it hurts so bad. So I will leave this post to end here as the rambling is in high gear! This blog is in for an emotional roller coaster.

Monday, June 24, 2013

Palliative Care Appointment



Today Logan, Joel, myself, and our nurse Cora went to visit the Palliative Care team. This was a recommendation from our geneticist as Logan's prognosis has turned toward a neurodegenerative disease that will cause decompensation and ultimately cut his life short.

We walked into this appointment blind to what was to come. We had no idea what to expect. To me, palliative care is a confusing specialty. It is not necessarily end of life care. From what I have learned, it is more about symptom and pain management. Hospice tends to be the end of life realm.

We met with a very kind team including a nurse, doctor, and social worker. They gave us a short explanation of palliative care and some of the services offered. We then talked about Logan and his story at length. I was then expecting to talk about Logan's future in more detail but it felt as though much of that was being held back. I felt as though his prognosis was not being said aloud, that we were pretending that his underlying condition was not life limiting.

I was waiting for some blunt, to the point conversations but instead we seemed to be talking around the real topic at hand, Logan's future. We talked about how Joel and I work to make decisions. We talked a little about big sister Lauren. We talked about whether we have spiritual support. There were many questions related to his secretions and constipation.

Still very little talk about Logan's future.

They did say that they are willing to go as far as we would like when it comes to talking about the details and that we could say at any time if we were overwhelmed. We were offered help by the physician to manage any issues that arise medically and the nurse and social worker offered to set up a meeting with our nurses.

We were not able to be offered any home visit nursing services as we are out of the service area. I was pretty perturbed by that. I am not asking for these services at this time as we are doing great and Logan is maintaining good health. But in the future this may be essential especially to our nurses in order to have someone trained in pain and comfort to guide us through.

There was talk of how they could help us in the case of a hospitalization. We could utilize them to help us with decision making. At that point a lot of the conversation went to hospital talk. I finally interjected and said that I want him at home as much as possible.

I turned to feeling frustrated. Don't get me wrong, I am very appreciative of their time and have a great deal of respect for what they do. But in that moment, I was feeling as though this may not be the best fit for our family. I walked away unsure as to what we can draw from this team at this time. There was talk of music therapy and massage therapy. All things we would have to go to the hospital to receive. We live about 45 minutes from the hospital so this is not an ideal option.

All in all, the meeting was a learning experience. At this time, the palliative care team will serve as a resource and in the future may become a more active part of his care. We learned a great deal and had an opportunity to discuss some of the tough stuff.

I walked away frustrated and wanting more information. I think part of the problem I am having is that I need more information regarding his brain degeneration. We have yet to see our neurologist. We see a neurologist at Mayo in two days but I am afraid she may also skirt around the subject. I need to know what degeneration of the basal ganglia really means to Logan and our family. What may we see in his future?

I am going bonkers with worry. When he does something out of his norm I worry. Last night he was staring at me, not blinking. He did not look like my Logan. I freaked out thinking, is this an absent seizure? I am sure he was just tired and maybe forgot who his mother was as I did go away on a trip for four days! Then today, it seemed as if every time I touched him he startled. I am then again thrust into worry. I know it is irrational and truly there is most likely nothing wrong. I think my emotions are in overdrive and causing me to read into everything.

Knowing more about what is really going on in his brain may provide me some comfort. Unfortunately I may not get the answers I am looking for. We are working with a child that still has no diagnosis. He is a mystery and so is his future. This sucks!

So on to Mayo Clinic in two days. Hoping to get more information about his brain, his movement disorder, and maybe some more treatment options for his movements. It is hard to watch him constantly move. He appears uncomfortable and in distress when the movements are in overdrive. It causes an increase of secretions and therefore increase in suctioning which is not comfortable.

I am honestly frustrated right now. I feel in the dark. I feel out of control. Not knowing is a scary place to be. But I am also committed. I want to know more and will seek out my own resources while working with the ones I am given. Logan has many people looking out for his best interests and I am comforted by that.


Sunday, June 16, 2013

Emotions

It has been about two weeks since my last post and boy was it a doozy! It feels like years have passed in the matter of a couple of weeks. There has been little down time for this mama. I came down with a nasty week long virus the day of my last post. I remember lying in bed typing, with the chills, thinking "I hope I'm not getting sick".

I was down for the count for three days and forced myself to go to work despite the exhaustion I was fighting. It took a few more days to finally kick the crud. I look back amazed at how sick I was and realize there was a reason for my illness. My body and soul were in shock. All systems were in overdrive and my radiator finally overheated. I was forced to sit in the shop and recuperate! Wow, everything does happen for a reason and I firmly believe I was being sent a message. The full meaning has yet to be completely understood but the key points were taken under advisement!

It was torture laying in bed unable to hold my son for fear he would get sick. I wanted nothing more than to hold him close and never let go. Instead I fought the plague and laid in bed and on the couch running the events of the infamous doctors appointment that will forever be burned into my memory. My mind kept going to deep and dark places of worry. I began to attempt to plan for a future that I have no control over. It was pure torture. I forced myself to work in hopes of finding distraction.

I have had my moments of grief, despair, anger, sadness, and the list goes on. It comes and goes and often at the most unexpected times. The card aisle at Target is apparently a touchy place for me right now. At this moment, I think I feel at peace but am unsure if that is the right definition.

Deep down, for many many months I worried that my biggest nightmare would come true, that we would be told our child is dying. I have run the scenario through my head more times than I can count. I have no idea why I have tortured myself with that worry for so long. I guess I would rather be prepared for the worst.

Boy does this conversation sound unhealthy. Where is the hoping and praying, the wishing it was me not my child? Unfortunately my inner voice would not let me go to happy places where there is sunshine and rainbows. I knew something was wrong with my child and it was more than could be fixed.

So now I sit in this place where I do not cry everyday. I don't know if it is denial or acceptance. I do know that I have my moments and they are not pretty. They come when least expected. But I also have some wonderful moments of peace holding my child, savoring the small stuff. I look at him with such admiration. My love seems even stronger but my distance also seems greater. This place in between is so confusing.

I am so thankful for the outpouring of support from our friends, family, acquaintances, and even strangers. I wish I could respond and send a thank you card for every kind thing that is said and every generous deed that is done. This would be impossible as the support has been so great. I want you all to know that Joel and I deeply appreciate all that has been done for Logan and our family. We are so blessed!

As for the near future, Logan sees a palliative care doctor in two weeks. We will discuss the future and learn how they can support us through the journey ahead. We will also meet with the neurologist and learn more details of how his brain is degenerating and what that may mean for his future.

In the meantime, Logan has been enjoying the beginning of our Minnesota summer with daily outings. We experienced lake Calhoun and can't wait to take a trip to the zoo and a Twins game. Watch for future posts about the Twins game as there is a great story behind this! Tonight he experienced a Minnesota evening...Mosquitos! Hopefully his nurse Cora and I took the brunt of the bites!

Stay tuned!

Monday, June 3, 2013

Heartache

Heartache does not come close to what I feel right now.

Logan saw the genetic doctor today and since that time my life has been turned upside down. His brain is degenerating. This means tissues of parts of his basal ganglia are beginning to lose function. We now have proof as his previous MRI one year ago was normal. We have no idea what this means for his future but we know this will limit his life expectancy.

Now we move toward palliative care. This means we shift our thinking to quality of life and comfort. Our geneticist has asked a palliative care group to join Team Logan. I should hear from them soon. They will help us navigate through this process. Like I said, timelines have not been given. Our geneticist said we can probably expect his degeneration to continue as it has and to look at the events of the past year specifically his loss of skills and see what speed he has been at. None of what I said makes sense on paper but I understood what she meant.

One of the first things Joel said to me was that we knew this was probably going to happen. And this is true. But until today, no one said it out loud, at least not a doctor. This does not make it any easier.

I am so thankful for Dr. M's honesty. We need the facts. Our time with Logan is precious. She will continue to seek out a diagnosis and is running new tests this week. She is committed!

In the meantime, there are a lot of tough roads ahead. We have a four year old that needs us more than ever and we have a marriage that must be nurtured. Thankfully at the center of it all is my precious porcelain faced Logan who lights up our lives each and every day.

I am overwhelmed with emotions accompanied by allergies and a headache. When I think there are no more tears to cry they appear. I am scared to stop moving, to stop distracting myself as the reality will then be allowed to sink in.

Team Logan, we may not be highly religious but we could really use some prayers for strength and guidance through this journey. Thank you for the continued support. It does not go unnoticed.




Weekend Photos