Sunday, June 19, 2011

Happy Father's Day!

Seems lately that I've been taking longer stretches between posts than I expected. Of course the more time away from writing creates a lot of material with so much going on. I will try to capture that as best I can as I reflect on my past, our present, and our future.

I've shared with some in writing and in person some of my history with 'parenthood'. I recalled that when I was a sophomore in high school I wrote a paper about one of my greatest wishes in life was to be a dad. No matter what career I pursued, what socioeconomic status I attained, I knew that being a dad was the most important goal. There was a period of time in my life when I wasn't sure that goal would ever be realized. Many of you know that story, and it's not my intent to recount all of the details of that. However, it's significant to me in that last year much of my personal life was coming together in ways that I for a long time didn't expect. Lindsay and I found each other, built a loving relationship and out of that created life. Our little angel had brought about so much peace and contentment when she was born. It seemed as though we were entering a time of wonder and joy that I can safely say was not matched by any previous time in my life. I might have had glimpses of this from time to time, but to hold this precious baby in my arms...there wasn't anything better.

Early on in Delaney's trauma I was in such a state of fear. I was afraid of losing her and in some of those moments I was afraid that I was losing my fatherhood. When we were in doubt as to whether she was going to survive at Beaumont I remember I was starting to prepare myself for losing my status of being dad. As if demoted in some way. What I have learned in the past few months is that even had she passed, I don't think you ever lose your "stripes". I will always be a dad, it's part of my identity now. I suppose that my brand of fatherhood comes with it a powerful feeling and fear doesn't enter into the equation, at least not as a debilitating emotion. I would say that yes, I do feel fear. Much in the way a soldier feels fear, but it's the courage that pushes us past that emotion and helps us to conquer it.

I think about that ability to counteract fear in much the same way I ran races in Cross Country. I used to get so scared before the start of the race. I would feel the blood draining from my face, and the dry mouth, and the butterflies in my stomach. I never really knew how the race was going to play out. I would wonder if my fear would get the best of me. Or would I use it as motivation. At the sound of the gun, all that fear would melt away as I took off into the first 300 meters or so. Once I got past the bulk of the runners and into the comfortable 1st third of the pack I could relax for a moment and settle into a pace. I knew that at least I wasn't boxed in with the mass of runners behind me. I would look ahead at the runners in front and make my plans to pick them off one at a time, use my breath and timing to pass at the right moment. Towards the middle of the 2nd mile I begin to think that the race will never end, I have to fight this feeling as if I am on a treadmill making no progress. For the rush of the last 600 meters will find me soon enough. This is where I loved running, that moment when I knew that most of the runners out there would likely falter. They would allow the fear to take over and somehow find satisfaction in that they were at least "out there trying". That's when I would pounce and pick them off as I approached the finish. Sometimes the more challenging the terrain of the finish, the better I performed. I needed the pressure. I might not have been a top performer in the state, but I did reasonably well. I take that attitude with me today as we face the marathon of our lives.

If we had to put a name on the goal of what would help us to maintain our energy and focus it would be 'balance'. Each week we have so much we have to attend to, from appointments with some professional we've employed in Delaney's care to the day to day feeding, diapering, suctioning, etc.. Every week we expect to see someone from our team of professionals. Our home care nurse, Cardiologist, Pulmonologist, Pediatrician, Neurologist, Physical Therapist, Ki master, all become our teammates in this relay for Delaney's life. It requires a lot of mental organization, spiritual guidance, resources, and respite. We've improved our ability to find ways to give each other breaks and get out of the house for things other than medical care. Early on we knew that this would be crucial to our being able to sustain our energy. Like many goals this is something that we aspire to achieve. We need reminders and helpers, and what we really hope is that Delaney improves the point where she needs less and less of this medical care, that we can return to 'just being parents'...which is a big enough job as it is without all of this "stuff".

Perhaps we are starting to see more signs of Delaney coming around. I won't kid you, she has a great many areas that need improvement. However, there are some really exciting albeit incremental improvements you need to know about. Last week as she was laying on her tummy, without prompting or stimulation she kept trying to pull one of her legs underneath her as if she was trying to get her leg under for support. A crucial step toward being able to support herself and perhaps, one day, crawl. While on my chest over the past several days she has noticeably picked her head way up and turned to the other cheek (with just the littlest bit of assistance). She's been vocalizing a lot more the past couple of weeks and most obviously this past week. While we typically hear this when she's upset or agitated, it's happening more and more at other times of the day. I have this feeling that all of these little developments will synthesize into much larger sweeping improvements. We keep cheering her on and with the help of all of our cheerleaders out there I know she can overcome!

One story that I thought was short and sweet was when we went to see Sensei last week. It was a normal session and as we began to wrap up I asked sensei if he was training a lot of students for Aikido. He had said that there were a few but that it will be picking up more as school lets out for summer. I then smiled and said that I might need to return and train with him again soon. He turned to me as he motioned to Delaney, "She will come train with us one day!". I think we will be happy to take him up on that offer! If anyone can help Delaney achieve that goal, he can.

Now, I was going to get more specific with some of her medical care, but today is Father's Day. So please join me in this time to celebrate and enjoy your children. Go out an play catch, throw the frisbee, get out on the boat, grill out back, be thankful your a Father, it's the greatest job in the world!

God Bless,
B & L & d

Wednesday, June 8, 2011

Time Will Tell

It's been a very busy few days here at the Flatter household. Many appointments, a lot of stress, and sprinkle in a little anxiety on top for good measure. Some days were filled with a pensive frustration, an uncertainty, where we wonder how we will keep all of this up. Perhaps all of the positive energy, thoughts, and prayers will keep this unit together and fighting - with hope.

Last week we saw a new neurologist, Dr. Finkel at the MIND clinic. I think we went to this appointment with a bit of cold expectations. We've had such disappointing interactions with neurologists to this point that we simply didn't get our hopes up. I would say that even as we entered the building to sign in I was bracing myself with the expectation of being frustrated, or otherwise perturbed. On this note, the medical profession didn't totally disappoint. We signed in at the front desk and being that there was one of the intake nurses unoccupied I took it upon myself to say hello and initiate the paperwork that we were told to arrive early to complete. The first thing out of her mouth was that 'there wasn't any' ... "Really?!". We had never been there before, surely there would be some insurance to be documented, our home address verified, contact information or that sort of thing. I questioned her. "Are you sure, we were told to arrive early to fill out paperwork". She replied, "Who are you here to see?" "Dr. Finkel", I told her. "Oh, he doesn't require any paperwork" (hold that thought). "Well, at least you will need to see my insurance card, right?" Yes, just as I suspected. I sat with her for the next five minutes doing just that.

I walked back towards Lindsay and Delaney, shaking my head and smiling sarcastically. We waited for about 10-15 minutes and eventually were called back to a room where the nurse took down some information, vitals, etc. As we were sitting in the room with her, she starts as all nurses do in this situation, "What brings you in, today?". She was very kind in her manner, I could tell that she wasn't really trying to burden us with the request, she simply had no idea. However, we have told and retold our story so many times that it becomes quite fluid in the telling. I have it down to a pretty good 5 minute rundown and could probably squeeze it into a 2-minute drill if need be. I guess what I find interesting is that lately the retelling of the story just weighs me down. I know that people can't read minds but it's become incredibly draining. It's something that we live everyday, but to repeat the tale begins to feel like little needles in my heart - stabbing. We proceeded to explain everything and you could see the shock overcome her face. She had a very sympathetic tone for the remainder of the short time that we spent with her. Remember, that 'Dr. Finkel doesn't require any paperwork'? Wrong. The nurse drops a one sheeter on us and asks us to fill it out. "Dr. Finkel likes his patients to fill out a family history". Really?! Fine.

We then wait for the doctor. He was an older gentlemen probably in his mid 60's. Well dressed in a suit which kind of took me off guard. I expected the traditional garb, but oh well. After we had already shared the story with the nurse and filled out the family history sheet, he clearly hadn't read much and we essentially had to retell the story again. I contained my frustration since I really wanted to give him the benefit of the doubt. He spoke english and from what could tell was a fairly good communicator. Score one for neurology, they are only a minus-four for the series and maybe this guy has a shot at bringing them into positive numbers. So we shared with him what we are really looking for, a second opinion. We provided him the paperwork, MRI, and EEGs from Children's and hoped that he might be able to shed some light on her brain injury, offer some sort of prognosis and give us some practical advice as to what we should be doing for her. He basically told us what most doctors have said, that "we" really don't know what will happen for Delaney. There is no crystal ball and we should continue to do what we are doing, in terms of her medical care, physical therapy, and any alternative treatments that we are comfortable with. He said that he has seen MRIs that look very bad, and children have exceeded expectations. Conversely, he has seen very normal MRIs with children have deteriorated poorly. He sort of ended by saying that we need to prepare for the worst and hope for the best. He said, and this was probably the sweetest thing he could have said - the best thing you can do is to love your daughter. No problem. All in all, better than the interaction that we had with CH neurology in that he actually talked with us but was intent on making sure that he didn't give "false hope". That's ok, we get our hope elsewhere.

In terms of next steps for neurology he indicated that he wanted us to have another EEG, which was actually done today. We went back to the MIND clinic early this morning. Lindsay held Delaney as I sat nearby and watched the computer screen tick-away reading all of the different areas of her brian activity. Being somewhat uneducated on EEG machines, I really don't know what to look for but was able to at least compare this to what I had seen on the previous three EEGs that were done at CH. The first thing that came to mind for me is that there were no periods of "inactivity" as indicated before. Her brain was constantly humming along. I might have to remind you that the Neurologist at CH said that these "things" don't improve in cases like this. Hmm, interesting.

We did get a call later this afternoon from Dr. Finkel who had a chance to read the EEG and report his findings. He indicated that over all Delaney's brain activity is very slow for her age. I'm not particularly surprised by this as she is sleepy and listless much of the day, intermixed with periods of wide-eyed movements. She's not the normal peek-a-boo baby we would love to see. However, he did say that she could begin weaning off of Phenobarbital (seizure med). Anytime I'm told we can wean off of any kind of treatment for her is a blessing. One less thing we have to attend to. So beginning tonight we started the weaning process, which will likely take the next month or two to complete. The highlight of this is that she will be under one less sedative, and perhaps we will see an increase of "normal" behavior.

On Monday of this week we saw our cardiologist Dr. Sommerfield at CH. We just love her. She is so caring, considerate, and kind. We feel that Delaney is very well cared for. She always takes time to check in with how we are doing, and really makes us feel respected. (What we don't love is that everytime we've been to CH it's been at least a four hour journey. Isn't there some way to shorten the time? Sheesh!) Sommerfield feels that we will probably only need to have another echo on her heart once a month or so due to the encouraging report that her Coarc is holding and her blood pressures are within normal limits. She is concerned about the VSD in that it is rather large and that unless or until that closes we will see some complications in her lung function which will have to be managed with the diuretics, something that we have been successful in doing to this point. Poor kid, she really needs a break.

Fortunately, we have another tremendous doctor in Devang Doshi who we saw today. He was glad that her O2 saturations are still very good even though we weaned her slightly off of the O2 level, from 1 liter/hour to .5 liter/hour. He said that her lungs sounded good and that most of the "junkiness" we hear is in her upper airway and that the lower lungs have been much clearer. He too offered concern for the VSD and that it will have to be closely monitored that her fluids are under control. Having any build up of fluid will complicate respiratory infection down the road and could be difficult for her to overcome. Doshi is also concerned with her hemoglobin levels, she was at "9" at last check and this is something that should be at "13" or so. We have her on an iron supplement and hope that this will help correct it. I was disappointed to learn that this will take months to show improved hemoglobin levels. However, Dr. Doshi is another one of these incredible professionals we are blessed to be involved with. He is incredibly compassionate and takes his time with us. He too attends to Delaney carefully and completely, yet takes the time to ensure that Lindsay and I are taking care of ourselves. He was so empathetic today and reflected how difficult it must be to be caring for our little angel. He said, "You guys are saints". It's one of those compliments that brings with it an odd feeling. We know what we are doing is difficult, and overwhelming. We have our moments where we aren't sure we can keep it up, but I don't think either of us consider it saintly...we just do. A touching compliment nevertheless.

As you know we don't leave the care of Delaney only to traditional medicine. We have been administering Ki treatments as often as we can get over to the Dojo. Unfortunately, we weren't able to get there last week so I was determined to be sure we would get back this week. So after our EEG appointment this morning we were already packed up and in the car so we drove out to the Dojo. We entered and Patrick was there to greet us shortly after we arrived. He wondered where we had been. I think they like working with who could resist our 'little d'?! Patrick set us up on the mat and began working on her. After about 20 minutes or so, Sensei switched places with him and continued the treatment. A couple of times Delaney moved her little arms and arched her back, much to the delight of Sensei who chuckled. He was very pleased with what he was seeing/feeling and when he was done turned to me and said "much a-better". With what I have seen so far with Sensei, I have total faith and trust in him. If he says things are improving, I absolutely believe him. I would say that it bears out in that her Coarc is holding, her lungs are functioning well, weaning off of O2, and weaning off of Phenobarb. Hard to argue with all of that. I am really hoping that all of the Ki treatments will heal the VSD which would be absolutely a huge win! If anyone can do it, Sensei can. I feel really good at the Dojo, it's a special place and we will go as often as possible.

As I was sharing in my last post, we have been increasingly concerned with her nighttime behavior that has her heart rate increasing along with agitation. We are doing all the right things with her medication and treating it appropriately. It's one of those things that you just can't rest until you know she's comfortable and not suffering. Her little expression on her face breaks our hearts and we want nothing but for her to be comfortable and happy. Overall, what Lindsay and I would like to see would be an increase in "normal baby behavior". I think so much of the improvement is internal. We would like to see some more obvious engagement, some approximation of communication. I think we want to know that she feels our love. I postulated tonight that perhaps these episodes are visible signs of her brain "re-wiring". Is it possible that her brain is trying to compensate and reconnect areas that have been dormant? In the process perhaps we get a very agitated and uncomfortable Delaney. Growing pains? I'm no expert and clearly this is a question we would love our neurologist to be able to answer, I'm just not convinced that anyone can answer that question. I wish this to be true. I will weather this storm with her every step of the way if it means that she will improve by some degree. Heck, I know I will weather this storm no matter what...but wouldn't that be magical if I'm right?

I mentioned in the beginning that our hope remains possible with the support of others and I am perpetually amazed by the outpouring of support from our community. The Seaholm Student Council provided us with a very generous monetary donation, we were speechless. It didn't end there. We were also graced with another extremely generous donation from the efforts of the Freshman, JV, and Varsity Girl's soccer teams. They organized a car wash in our honor and we are quite simply blown away by what they were able to bring in. It's so comforting to know that we have this kind of support. There is so much we have to do, and to be able to lessen that worry financially has been wonderful. We have so much uncertainty in our world and with all areas of support we have been given it helps us feel connected, by the uplifting spirit of strangers who we hope we can now know to be friends. One of my goals is that Delaney will be able to thank you all in some way herself someday. Doctors may not be able to predict what she will do or when, but I know with absolute certainty, that time will tell.

Ever vigilant, ever hopeful...with a little magic, TLC, and inspiration from friends near and far.

All of our Love,
B & L & d