Sunday, January 8, 2017

Transition

Ugh, I'm having a hard time figuring out how to start this one. I want to be transparent but don't want to cause worry and pain to others. So if you aren't ready, please don't read this. 

 Things have transitioned with Logan in the last two weeks. We are moving deeper into hospice care and further from our normal day to day management of Logan's needs. He sleeps most of the day. Requires regularly scheduled and as needed pain medications. He is showing symptoms of needing less nutrition and is having periodic shortness of breath. He is also having more difficulty regulating his temperature. We have decreased his feeding volume as his  body is needing less. He is on oxygen many hours of the day as his oxygen saturation levels don't stay above 85%. 

Last week the shortness of breath was becoming more pronounced. It didn't quite make sense as he was not sick. I called his pulmonologists nurse to ask if there were any recommendations they may have to help alleviate the troubles breathing. The voicemail I received in response was kind but was a huge punch in the gut. There is nothing more to do and we were encouraged to continue with our treatments. 

After this call I realized I hadn't yet fully transitioned myself to hospice! I must have been fooling myself thinking there were still things that could be done to keep Logan comfortable and alive. Unfortunately we are now to the point that the things that will help him most are the things that have scared me the most. It is now time to watch him lead us through the next stages. Our response now will change. We will truly begin to aggressively treat his symptoms in a way to create comfort and that may mean to the point where he sleeps all day, has low oxygen levels,  and so on. 

He is going through so many changes at the same time and is not on the normal path of dying. This may be because of his neurodegenerative disorder. We have no one to compare Logan to and have always assumed his journey would be similar to others. Right now it isn't. It's all happening at once and seems to go quickly and then halt to a stop and stay there for days. Torture is my go to word these days.

Our team of nurses and hospice caregivers are working so hard to stay on top of the changes but for me it is simply overwhelming. It is hard to even keep Joel in the loop every time something new happens. I don't know what is part of the normal process and what should cause worry. I am so scared right now. I think I am going to end the post now as the tears are flowing and the pain is just too much. Thank you for all the continued support and prayer. It means so much and often helps carry us through the day. 

Monday, December 12, 2016

How is Logan?

How is Logan?

This is a common question as of late. Hmm, how is he? Some days I wish I knew! Lately his days have been sleepy with periods of wakefulness that are often fussy. He sleeps so much it blows my mind and at times makes me jealous. When he sleeps he is so peaceful. To watch him sleep is like meditation. His body is so still with rhythmic breathing and a face that looks deep into rest. His skin is warm, soft, and so very kissable!

There are days when we only see him open his eyes for a few moments as if he is checking in on us and then saying "ok they are still here". And then other moments of utter discomfort. Seizures are still an issue and they have become longer and more upsetting. Thankfully the frequency hasn't seemed to change just the length. Logan now has morphine as an option for comfort and it has been a true blessing when he needs it. Just something to take off the edge so he can close his heavy eyelids and drift into sleep!

As for the rest of us, well we are all over the place! Lauren is playing hockey and Joel is the assistant coach for her team. The weekends are pretty busy these days! We actually have to plan around a schedule on the weekends! Lauren has had a few moments of deep questions related to Logan but they are often at bedtime and are short lived. We are taking her lead and when she is ready we talk about Logan. Her most recent question was what is going to happen to the nurses when Logan goes to heaven?

As for Joel and I, we are just going day to day. We still have challenges almost weekly and sometimes a few times a week without nursing help. It is mostly in night shift which really challenges us. We are trying to maintain our jobs as income is important. We have great support from our jobs but there is worry that if we take too much time off now, we won't have it for when we really need it. Our nurses are truly amazing, we just need more of them!

As for when we really need to take time to be home, that is a whole different bucket of worms. We have no idea what to expect next. We live day to day planning on our normal routine until someone tells us otherwise! We do have moments when in our hearts we know there is a change for Logan but beyond that it is hard to process what the change means. This is where hospice is so valuable. They will help guide us through this journey and will steer is in the right direction if we are off course.

So here we are in this place of uncertainty. What we do know is that Logan is getting everything he needs. He has a team that will do almost anything for him. As for the rest of the family, we will continue to work through our worries, frustrations, and fears knowing that some day Logan will be in a place of comfort and peace. Please share in prayer with us as we continue this journey with our dear Logan and Lauren. They are truly amazing children that blow us away every day. Joel and I hit the jackpot with these two!

Thursday, November 10, 2016

Gifts

In the past couple of months we have received so many gifts. Adding hospice care to Logan's team seemed to be a death sentence. Instead it has been a door to a new journey that at times is beyond painful but also joyous. Logan has an incredible team around him that also wraps their arms around our family to walk along side us during this journey.

Logan's home care team has stepped up to this incredible challenge. His team of nurses have shown such strength and advocacy for Logan. They fiercely work to ensure every day is comfortable and filled with as much joy as possible. They watch out for Lauren and even Joel and I! They do things far beyond the call of duty. As a nurse myself, I would have never thought of the profession as I now do. The respect I have for each of them to work day in and out in someone else's home. They are true heroes and angels on earth. We are beyond lucky to have been granted the services of nursing care. Without it, Logan would have never experienced the quality and longevity of life that he has. 

Another gift that to be honest I felt may be a burden is our hospice team. I say this transparently not to the individuals but to the new entrance of complications in our somewhat organized chaos. More people meant more communication, more confusion, more time. Yes those things have all come up but as we settle into a routine, they are a blessing not a curse. Logan has a great hospice team that work tirelessly to meet his goals. They have brought people into our lives that have provided us immense support even when we didn't think we needed it. 

On Tuesday one of those incredible people was Joseph from the Issac Initiative. He started a non-profit organization aimed at providing free family photos to those with a child who has a terminal illness. Through our social worker with hospice, we were connected with Joseph and were fortunate to be given the gift of memories by this wonderful angel on earth! 

I of course stressed over the outfits we would wear and at the end of the day today I thought, why? When Joseph aka Yeti showed me photos as he took them, I didn't look at the clothes I looked at our faces and the expressions. My heart was filled with gratitude and joy. Logan was mostly alert and Lauren put on a good show. Zeus even made some great appearances. 

After the photo shoot which was simply in our backyard, we talked a little bit with Joseph. I told him that in the past I had always wanted photos without Logan in his wheelchair. I didn't want to remember him that way. When I got home from work that day it was a rush to get pictures in with the fading sunset thanks to daylight savings! Joel had quickly taken Logan to the backyard amidst a pile of beutifully fallen leaves and there he sat in his chair. We all took pictures with him and the chair was part of him. It is him and it is how he can be remembered. It is ok! He didn't need to be held in awkward positions in our laps just to help me feel better and minimize his disabilities. He was as is and it was freeing. 

Thursday, September 15, 2016

Decisions we've made

This is going to be a really hard blog post to write and I'm having a hard time trying to figure out where to start. I have started and restarted this post many times. I keep procrastinating but it is time to let everyone know what is going on in the world of Mr. Logan.

It's been a really tough couple of weeks. As most of you know, Logan has a neuro degenerative disorder that doesn't have a specific name/diagnosis. We are on a roller coaster of unknowns and have spent the last five years learning on the fly. Unfortunately having a neuro degenerative condition means it is life limiting. We have always known this and I hope I have helped others understand the path we are on.

Having a child with a life limiting illness means the end may come sooner than you wish it would. Right now, we are not at the end but we are starting to prepare for it. Logan is now enrolled in hospice care.

If I could make the noise of brakes on a car coming to a screeching halt, this is probably what many of you readers are thinking or feeling. What?!

Hospice. It's true. We have started the transition to end of life care. Does this mean we are expecting Logan to leave us soon? No not at all. What it means is that we are putting our entire focus for Logan and our family toward giving him quality of life and comfort. We are no longer going to push for maintaining or improving his ability to function, instead we are going to support him as he tells us what he needs during this next phase.

Many people have asked me, "what has changed?" It is hard to describe as Logan's changes have been so rapid and have ranged from small to large. His seizures continue and will never be completely controlled by medication. In fact, they may continue to worsen. His discomfort is only mildly controlled by over the counter pain medications. He is doing more grinding of his teeth, shaking of his legs, and posturing in discomfort. He is requiring oxygen almost every night.

The other two most profound and recent changes are his eyes and heart rate. When he is awake and lying still, his heart rate is around 100 beats per minute. When he sleeps it is around 80-90. He is now having periods when he is completely awake and still, where his heart rate is dropping to the 80's. During these periods his breathing also slows. Most people would see this as a relaxed state but I worry that it is his bodies way of relaxing too much.

The symptom change that has bothered me the most is his eye control. I thought he was having a new type of seizure but I am pretty sure it is the lack of muscle strength in controlling his eyes. His eye balls are rolling upward and it looks like he is trying to look at something up above him. It seems to be worse when he is tired. He still has times when he can focus his eyes but it only lasts so long. It is so hard as I'm sure this bothers him to not have control over where he looks. It really upsets me too. I was once told that the eye muscles were some of the strongest in the human body and when they start to go it is a sign of profound degeneration. Seriously why can't it be something else that goes, why does it have to be eye control. Life is hard enough for him.

So back to the word hospice. We are at a tipping point where his team of palliative care providers are no longer equipped to provide the guidance needed to manage Logan's symptoms. Hospice is that team we need. We now have a hospice nurse, social worker, medical director, massage therapist, musician, and access to bountiful services. The doors have opened in ways I never imagined.

Logan will remain at home and we have decided to make his advanced directives to reflect this. We do not plan to hospitalize him if he becomes sicker than we can manage. We will not perform life saving interventions at this point either. I still can't believe I am typing these things being an ER nurse. I am so used to being part of a health care team that does everything imaginable to save a persons life. Now I have to completely change my way of thinking. Trust me, this has been the hardest part for me because what it means is that there is a day when I may have to be part of the decision to let Logan go without doing the full court press.

I know we will not be completely alone, what I describe is what I am used to, a clinical setting. We are so fortunate to have our home care nurses 24/7, a hospice team, and of course our amazing family and friends. We are not alone in this journey and He is with us every step of the way.

I would be lying if I said I am at peace with this. I am not there yet, I have a lot of work to do myself to make it to a place of accepting our fate. I didn't think hospice was in our near future. Every day though, I realize how thankful I am that it is here. Not to mean I want Logan to leave us, but that now we have a way to give him what he needs to live every day comfortably.

I know some day there will be a hole in our hearts and in our home. We have a seven year old that is living through this as well. She is so strong and I pray every day that she comes out on the other side a stronger person. I pray that Joel and I hold each other up when we need it as we have always done before. And for Logan, I pray for peace and relief. He has taught us all more than we ever imagined and now it is his turn to rest.

Thank you to everyone for the continued support and prayers. This journey is hard and at times painful but having love and support around us continues to lift us up.