Friday, May 13, 2011

Delaney Update 5/11

I had quite the sleepless night, both from feeling wired and overly vigilant, for whatever reason I just couldn't "trust" the machines. It's really difficult for me to hear Delaney feel any stress or pain whatsoever. I guess it's just my natural reaction to her having been through such overwhelming trauma I just don't want her to suffer even the slightest discomfort. However, between the Home Care Nurse yesterday and several developments today I have to become more comfortable with her having a little struggle...that perturbation and challenge will stimulate her to grow and learn. Probably a good lesson for is all.

One of the observations that Sue made yesterday is that as long as her O2 is in the normal range we shouldn't be suctioning so frequently. Doing so doesn't allow for her to make an attempt to clear things on her own. She may eventually relearn her cough and clear her throat again. If we take over for her all the time she might never re-learn. That's really tough for me. That image of her struggling to breathe that fateful night is etched into my mind and as a result I have the hardest time resisting helping her any sign of trouble.

Today we met with Syjid, our physical therapist, a very kind and gentle man. Well spoken, with a slight Indian accent. He spent about two hours with us teaching the exercises we need to help Delaney regain and maintain her muscle tone responsiveness, flexibility, and most importantly her suck and swallow response.

After a few minutes of evaluating her, it was fun to see him smile and chuckle at Delaney's efforts. She was pushing back and showing off her strength, he even stated how he reviewed her chart before he arrived and had a much different impression of what he was going to see. He was impressed with how alert and reactive she is. He was encouraged by that and encouraging to us that she will improve and quite possibly regain these essential skills.

Probably the most interesting part of his visit was that he explained that his own son was in a very similar situation which lead to a astonishingly similar prognosis, that his son overcame and surprised everyone. His son was also healthy at birth and a few weeks after being home had developed pneumonia, they brought him to the hospital and had many interventions that were similar to ours. He too required CPR and was deprived of oxygen and also required ventilation. The doctors told Syjid and his wife that his brain was compromised and would likely have a lot of severe problems. He is now a healthy, albeit hyperactive, young boy. To which I exclaimed if Delaney is to get through this, I can take hyperactivity!

Later that day we had a busy afternoon getting blood work and x-rays at Beaumont. What started out as a simple walk-in procedure became a four hour draining outing. I hate how everything takes so long in outpatient care. Granted I'm thankful that he were even able to accomplish this on a walk-in basis but Delaney is so fragile you could clearly see the effects of being carted around on her. I just wish things could move as quickly as they do for in patient care. When we were at Children's Hospital, they would order up and x-ray or procedure and it was there within minutes.

On a walk-in basis there's so many steps. Checking in, wait, go to the next station, repeat the same information, wait some more. I just wish they had an online registration that would give you a number or code that you could bring with you and cut all this mess and red tape. It's a bit antiquated and really in this 21st century I can't understand why we can't streamline this process especially in a hospital. It's not the same thing exactly, but making an appointment at the Genius Bar at an apple store was simple and automated. We should do this for medical walk-in appointments.

The good news is that the x-rays showed her lungs were in relatively good shape. One of the x-rays was able to be read right there and it was nice to have it interpreted immediately. The radiologist took several pictures with a machine that had digital imaging. It was neat to be able to see this in action and actually see her airways in the screen. We learned That the concern we had before about the narrowing of her left bronchus is no longer present. Also, there doesn't appear to be any scarring or damage toner lungs from the vent. He also didn't see any indication of a "Strider" (a notable sound that is present in airway constriction). We have to wait on the rest of the film and for Dr. Doshi but this was at least a good sign.

Late last night we discovered something which was nothing short of amazing. I noticed that her eyes were rather "goopy" so we put some drops in each eye. We couldn't believe what happened. She ever so slightly moved her eyelids in response to the droplet of artificial tears! It was the closest we have come to seeing her blink all the time she's been recovering. After seeing that, I know we are going to see more development. With my background in behavioral Psychology, I know that both striated and smooth muscles can be trained and controlled. Particularly in this case we know those connections to her brain are active, because she reacted to the stimulus. Simple put: stimulus -> response -> reward...we can help her relearn and retrain these functions!

There is so much we are having to take on in this fight. We want nothing more than for the nightmare to be over. We hold on to every positive sign we can and hope that each day brings us closer to normalcy. There is a mountain of work ahead of us. We need energy, patience, optimism, kindness, respite, laughter, diversion, peace, hugs, quiet, courtesy, an most of all understanding.

The support we are receiving in so many ways is humbling. We have been so touched by the generosity of you all. In that spirit I'd like to thank the Seaholm Water Polo team for their fundraising efforts, they took it upon themselves to raise $250 dollars for Delaney. We are so touched by this. No matter what may be going on at Seaholm with recent attention about troubling graffiti, I know that the vast majority of our students are good and kind young adults. We have so many reasons to be proud of them, I truly hope that efforts such as this outshine the negative attention that vandalism has brought to our community.

There are so many good people in this world, and we are speechless as we consider how many people have been inspired by our situation. Inspired not only to help in every way, but to hold their own children in a different light.

Give your kids an extra hug and kiss today, they are a gift.

B & L & d

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