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 us...plus 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