yes i know im a wee bit early with the whole weekend thing, hu? well its simply because i dont know when ill have a chance to get back on. tomorrow is our big night, the one we have been hoping and waiting and praying on, tomorrow we will take zach to a nursing home, all his gear in tote, his medications, his machines, his oxygen, his formula, his boppy, his blankets, my blankets and pillows and whatever else and we will roll into the nursing home around 3pm. i will be staying with him of course, over night, we will leave out around 7 or so saturday morning. the sweet sweet beauty in this is once this is done....and the 30days have passed, zach will automatically...not according to income, qualify for medicade, this is a huge step for him as it will open more nursing hours, respite care hours, medical equipment, and more. im beyond excited to get this overwith, and to think, if i had listend to a certian someone at the hospital who said we wouldnt qualify, we wouldnt have this opprotunity, im so very greatful for the inspiration of others who have walked in our shoes for helping and guiding me to this decision. Thank you!
so as my last post said we dodged a huge hurdle today, with the negative results for infantile spasms, very greatful i am indeed. i had done soooo much research on it, so that if the answer had been yes we would have known the treatments, and the next steps, i talked with many wonderful moms who have gone thru this and its so heartbreaking, my thoughts will always be with them, thank you for your support thru the waiting.
on saturday we are having family photos made....WAHOO!! its been a really long time since we have done this, since before Harold went to Iraq in 2005, when Chance was just 8 days old, so its long overdue, and with him preparing to leave again, we need to get this done. the boys have MATCHING shirts....sooo cute, i cant wait to see how they turn out.
as i was typing this, we had to inturpt this and call 911 again for Zach, yes we though we were headed yet again to the ER and the PICU, our hearts stopped. Zach begant o cry a very strange cry and when we checked his pulse ox, he is on spot checks, as he has blisters on his toes from the probe:(. so i check the pulse ox and to our suprise zach is at 48! we trouble shoot again the line is fine, its connected, the machine is on, we begin to try and wake zach, his sats go up when we turn him to 2 litters, to 66 and then at 3 littes he hits the mid 70's, and then begins to go down. i called 911 again and as im on the phone with him he is shooting back to 97, it seems his humidifier kit has a pressure release valve and it was stuck! once we removed the stupid thing and connected to straight oxygen he is fine! ambulance came out anyway and checked on him, the same guy from last week....we will soon be on a first name basis with him. sigh. to much drama tonight, im tired. our nurse is here and im headed to bed.
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