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!
