Tuesday, August 11, 2015

Happiness

Hello!!!!

What a great summer it has been. We are very fortunate for the wonderful summer Minnesota has given us! Logan has spent some quality time outdoors! I always wish for more but Mosquitos can be a hindrance. They really love to bite his face. Last week he had a bite under his eye and on his forehead. No big deal but he can't itch them! We are so thankful for Benadryl cream!

Well I have fun things to report and I know this is rare. Most of the time it is a depressing doctors appointment or change in symptoms. Not this time!

Last week we had some great Logan moments. I came home from work one evening and he was in bed. I went in and gave him a hug. It isn't your usual hug. I have to take his arm and wrap it around my neck. But once I do he relaxes, closes his eyes and slows his breathing. All is right with the world in those moments. 

So that is what I did and then I sat with him trying to relax him for bedtime. Lately he has been a night owl because of his medication regimen . Nine pm is prime awake time! So I was in his room, did the hug/cuddle routine and said goodnight. As I pulled my arm away to leave the room he opened one eye and looked at me. I knew he was scoping me out hoping I would stay to cuddle longer. So I did and this happened about three more times until I figured him out. Finally I didn't say good night but slipped away and he stayed sound asleep!

My heart melted knowing he was aware of me being there. I felt so significant to him in that moment. It can be hard to find those connections with him at times. 

Tonight is a good example. I came home from work and went straight to him to say hello. No matter what I did he just wanted to watch toy story. I have to chalk that up to being a four year old almost five year old. He isn't always going to want to be involved with me and I have to be ok with that.

Oh what a mommy bummer!!!!

Otherwise life is pretty good. His seizure status really hasn't improved. He has had a couple of big seizures in his wheelchair in the past week which is abnormal. We pray for control of them soon. He is staying healthy, knock on wood. The plan is to put him back in school but to hold him back in the class he was in last year. Three days a week with his same amazing teacher seems much more do able than a longer day with a new set up. I wish it was different but we need to understand his stamina is not what it used to be. I love spending this time of year getting him and Lauren ready for school.

She is beyond ready to start first grade. She is chomping at the bit to see her friends and be given a challenge. I have been so extremely proud of her with Logan. The other night it was me, her, and Logan. We didn't have a nurse. She jumped in and suctioned him a handful of times. 

I never ask her to help with his cares. I don't want her to feel obligated. She was so sweet to jump in and help and when it was time for bed, she asked if they could have a sleepover in his bed. My heart melted again! I'm so grateful for them both. I'm the luckiest mom ever! 

Thursday, July 9, 2015

New neurologist

Today Logan saw a new neurologist at the request of his current neurologist. He sent us there for a second opinion regarding Logan's seizures. We started the day with an EEG (test that monitors brain activity). Of course Logan didn't have any seizures during that time. Go figure! It still showed abnormalities that have been noted previously and this neurologist basically said, he has an irritable brain. 

We spent a good amount of time with the doctor and his nurse. It cracked me up when she walked in with a thick stack of medical records for Logan. We joked about how much time it took them to read it all! I have to say though, I was so impressed when the doctor started talking with us, it felt as though he knew all about Logan before meeting him. It meant a lot to know they cared enough to do the leg work before our interaction. We didn't have to rehash all of his medical history. 

The goal of this appointment was to see what other options we may have to get Logan's seizures under control. The first plan he made is to increase one of the medications he is already on. We are still at a lower dose and we think this one gave some positive benefit when we started it. If that doesn't work there are many more options. He may recommend we bring Logan in for an overnight stay in the hospital to monitor seizures. He thinks it would help us capture seizures on an EEG and help him better understand what to treat. 

We also have many more medication options and he has a specific one in mind that he may move toward. We also discussed medical cannibus. This is now legal in the state of Minnesota and in the past week became available for people with certain conditions such as epilepsy. I have to say I was embarrassed to ask. It seems like such a controversial topic. We had a great discussion around the option and may go with it in the future. With that being said, we would continue his current regimine of meds and use the medical cannibus as an adjunct. More to come on that topic. 

I left the appointment feeling hopeful that we have a renewed chance at lessening Logan's seizures and giving him a better quality of life. After most of these appointments I feel drained, defeated, and worried. Not today! We don't have a magical fix but we have a team of people that will give us a fighting chance at doing the best for Logan and that feels great! 

Monday, June 22, 2015

Where have we been



Hello again blog world! I've been away for too long. Our busy lives have taken over! 

Some of you who don't follow Logan's "Team Logan" Facebook page have missed out on periodic updates. I find it much easier for short updates and photos. Click this link to take a peak and while you are there, like his page! https://www.facebook.com/teamlogan2013

So what's going on with Logan you may ask...where do I begin? He is now 4 1/2 years old and just about 50lbs. He is a big boy! Must take after his dad. And I say that as Joel is tall ��.

Logan is in summer preschool for a few weeks. We are also trying to get in a few doctor appointments when we can as Joel and Lauren are home for the summer. Logan has a new swing in the backyard and has enjoyed the moderate summer days for long walks in the neighborhood and trips to the library. We have found a few new shows that he likes to watch and unfortunately one of them is sponge bob. Yuck! I refuse to let him watch it. 

Where are we on the medical front...this will as usual be the bulk of my post. We are unfortunately faced with medical needs on a daily basis. Logan's biggest problem right now are seizures. They are out of control. He has seizures every day up to 30-40 times a day. Most of his seizures are generalized. They last about 30 seconds. When they occur he arches his back and his arms and legs go into a distinct posture and his eyes gaze up and over. He does a little shaking but just mostly the contorted posture. Many times he has a couple back to back and appears uncomfortable. The bad seizures happen a couple times a day. They are called tonic clinic. When people see them for the first time a lot of them cry or tear up. They are pretty upsetting to see but thankfully are short lived. I would video tape one and show it but they are just too upsetting. 

We have Logan on three seizure medications and at pretty decent doses. We have added a medication called clonazepam to help aide in reducing the seizures. This medication is very sedating and makes Logan sleepy and groggy much of the day. Sleep is the time of day when we see the seizures stay at bay. 

We have exhausted his neurologists ideas and have been sent for another opinion with another clinic. We see them in a couple weeks and I hope they have something for us. It is heart wrenching to see what this does to him. I'm worried at some point we won't be able to control the seizures at all. We are curious about medical marijuana as it has been approved in Minnesota. I have heard that only certain doctors will prescribe it and I don't know if anyone will do it for kids. 

Other than seizures Logan continues to remain healthy. We have had to make another decrease of his feedings as he continues to gain weight too quickly! He's a little pork chop!! We had an assessment done today to do some home modifications such as a roll in shower and lift system to get Logan in a bath chair and his wheelchair. Hopefully the county will approve everything and we will be able to move forward with construction this summer. We decided to go with a less is more approach so we won't be doing anything too major. 

Other than all that, we continue to move on with life. We are faced with many challenges related to Logan's medical needs including nurse shortages. It hasn't been easy to fill shifts and Joel and I have been pulling a fair amount of overnight shifts. It doesn't make life easy and some weeks we burn the candle at both ends. We think there is a light at the end of the tunnel��. 

It is hard to stay optimistic about Logan's condition when we see decline around every corner. He remains my calm, loving, sweet, and handsome boy but I'm not gonna lie, looking back at photos from the past break my heart as I see where he once was. For now we just do our best to enjoy summer!









Wednesday, April 29, 2015

Hello Sping and long awaited updates

Hello everyone. I am such a bad blogger! Life gets busy and this seems to be one of the last things I do. I should write more as it is so therapeutic. Life has been good in our home. Logan had a great winter. He stayed pretty healthy and avoided any major infections. We have worked on tweaking some things over the winter. We have adjusted his tube feedings a few times and have been trying to get his seizures under control.

Logan has generalized seizures up to 30 times a day and a couple grand mal seizures a day. We have done many medication adjustments and have recently added a third medication. Hoping this one is the trick. It is so distressing to see him experience seizures all throughout the day.

We have been patiently, at least as patient as I can be, to hear back from our genetics clinic. They sent a request to the National Institutes of Health, Undiagnosed Disease Clinic to look at Logan's case. They sent us a letter a couple of week ago stating they were not going to accept Logan into the program. This sounds harsh, but wait for it...they think a gene mutation that he and I share is the answer to his problems. They not only think that HUWE-1 is the answer for us but gave us the name of a doctor that is researching this gene. From my quick view of her research in medical databases, it looks like it is being studied from a cancer perspective. It will be interesting to see if our genetics team finds more and learns more from her. I am hoping she is able to reach back from their requests and help us out.

With genetic testing these days, there are more and more rare diseases being diagnosed every day. Maybe Logan can be part of the puzzle to a diagnosis for many other people. I know we cannot cure him, but we can help future generations in our family understand the possibility of this being carried through to other generations and at some point in the future, eradicate it. I love my son, but do not wish this upon any other child. Logan is my angel and teacher, but if he was to choose his path, would it have been this one? I don't know and we will never know.

In the meantime we plug on as we always have. We are having a little shortage of home care nursing staff. It seems as though nursing in general is in need across our area. I hear it from our home care company, nurses I know in long term care, and within the hospital community that I work in, that experienced nurses are hard to find. I can't definitively say what the true factors are attributing to the issues but I have my own conclusions. The economy is pretty decent, gas prices aren't too bad, baby boomers are aging, health care is offered to more and more people every day, we have less primary care providers, and our population is growing every day. I'm no expert, but I feel we are at a tipping point in health care. More people are using services and less people are available to provide services. Logan and our family are unfortunately affected by this as we deal with a shortage of nurses in our home. I do admit we are picky but my next few paragraphs may speak to why that is.

We just had an appointment with Logan"s pulmonologist. I truly adore, respect, and appreciate him. Our visits with him fill my cup! I say that as a nurse, health care professional, care provider, and parent. He spends the time ensuring Logan's needs are addressed and addresses the family unit as well. He is so incredibly knowledgeable but beyond that, he is honest and factual. Aside from the developmental pediatrician that told me three years ago "something is wrong with Logan and we are going to figure it out", our pulmonologist has been up front from the beginning.

I will never forget the first visit we had with him. I was on my own with Logan. That was back in the day when I was able to take him out and about in his baby carrier with not a care in the world. At the first visit, he walked in the room (Logan was in my arms) and sat in a chair just inside the door across from us. He sat, watched and listened as Logan breathed. I knew what he was doing and did not feel awkward or put off by it. As a nurse, I understand how easy it is for a doctor to lose the ability to gain a good assessment on a child the minute the child sees them in the room. From that moment forward, our doctor gained my trust.

During that visit, we had a very open and honest dialogue. He told me he was concerned about Logan's respiratory status and was worried that his future would include a tracheotomy. Remember, I was there by myself. It wasn't easy to hear, but I needed to know what the future may hold. As an ER nurse, worst case scenario is how I am trained. At that point, these conversations were becoming somewhat normal. I prepared myself to hear the worst case scenario at each visit with each new specialist.

So now we are back to the present and I am talking with him about advanced directives and code status. Logan has a palliative care team that helps us address this at least every six months. We have yet to make a decision to draft any paperwork to decide on how we would proceed in the event of an emergency or significant medical event. Joel and I have discussed it, but have not moved forward from there.

This is a hard topic as we have always looked at Logan's situation as being respiratory. He has a tracheotomy and requires so much assistance with suctioning and maintaining a clear airway. We have been programmed through training and symptom management to address this first. As a health care provider, airway is always the first area to address. Well, trust me, we have this one down to a tee! We are so good that his pulmonologist was beyond impressed that Logan stayed out of the hospital all winter long. In fact, he didn't even require a visit to the doctors office or urgent care. We were able to rely on our nurses to implement orders quickly and notify his pulmonologist team when further medications were needed to treat respiratory symptoms. Our nurses are truly top notch. They are the reason Logan has such an amazing quality of life and remains so healthy despite all the things going against him. Their team work, communication, and dedication to Logan far exceeds my expectations.

Back to the pulmonologist appointment.... we did discuss Logan's advanced directives and code status and had a frank conversation regarding concerns related to his seizures. Logan has a lot of seizures. He has two kinds of seizures as I stated earlier in the blog. They are short lived and don't seem to cause him too much anguish over a long period of time. Don't get me wrong, they don't look comfortable and I'm sure he is sore and upset afterward, but they last less than 30 seconds a piece which is encouraging.

The one area that I was thrown a curve ball during our pulmonologist appointment was the possibility of seizures being a life threatening event. I have for so long put in my head that the biggest concerns for Logan's long term health would be a respiratory virus/bacteria that would move toward a nasty and worsening case requiring us to make some big decisions. Well, after this visit, seizures have also been brought up as a great concern. Our pulmonologist does not only have experience in that line of work, he is also an intensive care doctor. He has seen the worst of the worst over the years and understands the full gamut of presentation and long term complications. Seizures are a great worry in our world for Logan but no one has truly spoken up and put heavy weight behind the concern that continued seizures would have on Logan. At this appointment, the concern was fully laid out and I certainly heard it.

It is never easy to hear someone tell you they are worried and for them to fully explain the amount of concern they have. I did listen and it was pretty brief but trust me it wasn't a quick comment on the fly, it was made with the intent to spark thought for Joel and I. I am not one that can jump right into a territory I am unfamiliar with and begin a strong line of questioning. I am one that needs some time to chew on concepts, do a little research if needed, and then come back with my line of questions. Since that appointment, I have a boat load of questions and concerns. Thankfully, I feel confident enough in the team around us and with Joel, that I am able to come to an understanding that no matter what, "it is what it is"!

We cannot control everything. We will do our best to provide Logan with a full and happy life. We will do our best to support one another in our marriage and ensure that Lauren is a healthy and well adjusted child among the chaos and confusion. When curve balls are thrown our way, we will duck, jump, plow ahead, or create an invisible shield to allow ourselves to manage the changes we encounter.

Logan is a true angel on this earth. Just holding him and looking in his eyes gets to the soul of who he is as a human being. And that interaction is not only one sided, he looks deep into my soul and touches me in ways no one else can. I feel he does this to everyone that comes into contact with him. His dark brown eyes, long stares, and calm touch transcend much farther then basic human needs. I sit with him and cuddle him into my chest with skin to skin contact and we connect in ways that words can never describe.

So yes, we have some difficult times ahead of us. Logan's brain is degenerating. No one can tell us what this may bring exactly but we are continuously reminded of what we must bring to the table to fulfill Logan and our lives with what is most important. With the warmer days, time outside has become important. Thanks to one of our nurses, we have another seating option for Logan. We have a split level home with an upstairs, two main levels between kitchen and family room, as well as a basement and with the addition of a secondary seating system, we are easily able to include Logan in meal time and time out on the back deck.

As always, thank to those that continue to support us on this journey. There are good and bad days, but truly mostly good days and any check ins's are welcome. I may break down on you when you ask, but please know that I am always willing to share our story. It may not be easy, but it is real!