Jan 13, 2015 Hello!! Its Eddies mamma here. Its been awhile. I took a hiatus from facebook. To be honest, the holidays were very hard for me. Being the the second of 3 holidays in Eddies short life, it was difficult to be spending it again in a hospital. But we got through and made the best of it, decorated Eddies bed and room and all of the above. I hope all of you had good holidays and are having a great new year so far! I decided to turn around my perspective and attitude. Ive spent enough time crying and screaming and looking backwards. Yes I grieve and I miss Eddie the way he was, but I cant keep looking back. Its not fair to Eddie. It was a year and a half in December since the drowning, 18 months... Eddie was 18 months when he fell in that pool. He has now been this way more than he hasnt. I love my son infinitely and unconditionally. I love him as he is now as much as, if not more than, I loved him before. He will recover, he will come home, he will have a quality life. So I choose now to turn my head and look forward, to have hope, to have faith, and look forward to the boy he will be in the future, while enjoying the boy he is today. Here he is last week just after getting a fresh new haircut from his mom here. Im getting good with those scissors! He looks like such a big boy with his hair cut. And he is getting so big too! I cant even shop in the toddler section anymore, hes already wearing boys clothes. Theres another picture of him holding his hands! Thats a new thing he can do. Every day is a new day. Every day he shows us more of himself. Every day hes more conscious. Its a lot of work on my end, but its all worth it. I spend every minute I can doing therapies with him. But of course, I also spend time just cuddling and loving him, and reading books with him. As you can see, in these pictures he is off the vent. He is only on humidified air. He is doing so good with his breathing! When he is breathing off the vent, it is now always completely free. No more CPAP machine, which was a back up, that kept his lung pressure balanced, and gave him a breathe if he skipped one. Now they just turn it off and hook him up to an aerosol machine that humidifies the air he breathes through his trachea. They switched him to this in November for 2 hours a day. December they added an hour, and Im so happy to say that today they added another hour!!! Woohoo Eddie!!! My boy!!! So for 2 hours twice a day now he is off the ventilator, off life support, unhooked and breathing free!!! Today I had another chance to hold him free of wires. His food was off and unhooked, the pulse oximeter was taken off, we were moving him from his chair because we were outside to his bed, and I took the chance to pick him up and walked around the room, spinning around in circles! Im crying just thinking about it. Its the most magical best feeling in the world to hold my baby free of wires. Something so simple, and to the lucky mothers, unappreciated. To walk around with him, instead of just standing holding him.... and to spin around, WOW!!! Its truly amazing! Truly wonderful! One of the cool things about adding an hour today, was my conversation with the doctor. Today the medical director of where Eddie is at was on duty, he is not always there, usually there are other doctors on. A year ago before we started the weaning process, this same person yelled at me for pushing to start weaning, telling me with certainty that Eddie will never breathe again on his own. I obviously didnt listen to him. Well, today he was there, and I went up to him to talk about adding time. I was telling him how good Eddie has been doing, and he seemed taken aback by it. He kept saying wow! So (nicely with a smile) I said, Yea we were told he would never breathe again. And you even told us that. And he looked at me and said, I was hoping to be proved wrong, and I can tell you Ive been proven wrong. I think his progress is remarkable. SAY WHAT???!!! Ha! So, I smiled back with relief, and said, I told you not to doubt Eddie. Now lets all take a moment to give Eddie a huge shout out for defying all the odds put in his way, for fighting such a hard fight!! My son is a miracle... and he aint done yet folks! Not even close! Im looking forward to when he is off the ventilator completely of course, which he will be, but at least when hes off during the day. This will open up the chance to do so much more with him, even take him home for the day! One thing on the horizon, is hyperbaric oxygen. Ive been looking into this a lot over the past couple months, seeing about doing it soon, as I heard of a place that will treat kids on a ventilator. But its just not possible, or probable, right now. Ive called many places all over the country to talk, Ive talked with pulmonologists and respiratory therapists. For one, the protocol for anoxic brain injuries, is 40 days in a row every day, one month off, then 40 days again. This alone is very expensive. To do this with Eddie on a ventilator would require renting or buying a special transport van, and paying for both a nurse and respiratory therapist to come along. All of the above would add up to hundreds of thousands of dollars. Second, and most importantly, the very few places that do this treatment with children on ventilators, only one in LA, are just trying to make money. The ventilator adjusts for pressure changes. Hyperbaric/high-pressured oxygen wouldnt work, as the ventilator would simply adjust for it. But we will certainly be doing this as soon as we can. Trust me, Im trying to find anything and everything to bring Eddie back sooner, but we must be patient. As quickly as a brain injury can happen, as quickly as taking a shower with false assumptions as to where your baby is, the recovery process takes much much longer. The brain does not heal over night, and to expect it to, is just signing up for let down. For now, as I said, Eddie is improving daily, and I could not be more proud to be his mamma bear! God, I keep crying as a write this. But they are cries of joy. It has been a living nightmare for over a year and a half. But as I said, I am Eddies mamma and I love him more every day. He has taught me so much. He is my little buddha! Thank you God for saving him, for keeping him here to teach us all. Thank you for guiding him and me along this path of recovery. AMEN!!!!!
Posted on: Wed, 14 Jan 2015 05:21:29 +0000
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