Tuesday, January 31, 2017

Planning

Why is life so hard? These past couple of days have been full of emotions for Joel and I. I had a meeting with our hospice social worker on Monday to start the discussion of funeral planning. Yup, we are on that path and it really sucks! It was a hard visit but very necessary. She helped provide resources for planning and also helped me think of things that I would never have thought of. Now it is up to Joel and I to make decisions for when the time comes. The meeting was really meant to be informative and I thought I was prepared to talk about the main to do's. Boy was I wrong. It was like Niagara Falls coming from my eyes! It may sound horrible but it was truly therapeutic and eye opening. 

The one thing about the conversation that was the hardest was toward the end when we talked about where we are at in the journey. Our social worker talked about how the end can feel so far away for so long and then suddenly it is right in front of you. I asked or said (I can't totally remember through the tears) if it is right in front of us. I have always asked our hospice team to be transparent in letting us know when it is time to prepare for next steps. Yesterday the conversation ended with, its time to start having extended family and friends visit. Partially so when the end is near we are not in crisis mode having people come. Instead we can be proactive, allow people the time and allow us to control the influx. Then when it becomes truly time for us to spend the quality and intimate time, we will be able to focus on our family and Logan. Logan has had good days and tougher days lately. We expect that the good times will continue to shorten. Children proceed through the dying process differently than adults and children with neuro degenerative disorders throw even more curve balls. We have no timeline right now but don't want to regret not taking what we are blessed to have and make the best of it. 

Of course I went to work after the meeting. What a bad idea! It ended up being a short day. Thankfully Lauren was off school that day and at a friends so Joel and I met up and talked over a few things. Thanks Ginny! Joel decided to take the day off from work today. Some days are just too hard to hold it together and we need our time to process. Yesterday evening I also had a great visit with friends. My group of gals are the best. I sent a text message in the afternoon in crisis and by that evening was crying and laughing with them. They are an amazing group of women who each live with the normal challenges of parenting and the added challenges of differing children's abilities. We all share a common bond among our children that is unexplained. 

Today wasn't as heavy. I was exhausted but not overcome with emotion. I admit I did come home crabby which is not fair to Joel and Lauren. There seems to be so much to do right now. So much planning and communicating. Joel and I will need to sift through things in the next week or two. As we do, we may reach out to others for help. If you are friends and family and feel the need to see Logan please email me or message on facebook or call. My email is rnzacher@gmail.com. If you know my number or facebook please reach out that way too. We will need to be protective of our time and emotions but also want to ensure we are allowing our support system the opportunity to say goodbye. Please don't take goodbye as an immediate end but a well wish to Logan for his future journey. If you have other ways you would like to reach out with a letter or email that would also be appreciated and we can share it with Logan. 

And for those that worry about our Lauren, we worry too. Tonight she came to me and emptied her school folder. She said she worked all day on something for Logan. It was a beautiful picture with a snowflake. She said that she was scared that Logan will die this year. She said it with a sad but straight face. She then said, "mom I don't want to talk about this at bedtime tonight otherwise I will have bad dreams". I asked her to sit on my lap. She really didn't want to but I made her. I was blunt and said that Logan will die this year and that we are all sad about it. I asked her if she had been hearing us talk about it. She said she had. I told her it is ok to be scared and sad. We do share things when she is present and we express emotions around her. We do censor some things but in the end we feel it is better for her to be somewhat in the know than totally blindsided when the day comes. She was pretty quick to end the conversation but that is how she operates. We take her lead and don't push. She is a smart and intuitive kid. I have no idea where she gets it! 

Thank you for the continued prayers and well wishes. This is such an intense process that is testing our strength every day. Logan is the most incredible human being I know. 

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.