the things i do....

i just REALLY realized how on edge i am...by that i mean, that i have this ritual EACH AND EVERY NIGHT, even when my wonderful hubby says he will do it....here is my ritual.

we give the boys a bath and i take over matthew and james takes over alex. he puts alex to bed and says prayer and cuddles with him. with matthew, he already KNOWS that when i put him on our bed, it is time for his inhaler and OOOOOHHHH how he just LOVES that inhaler. i feel sorry for our neighbors because he just SCREAMS and cries and turns BLUE because he is holding his breath! anyway, after all that drama (and YES anonymous, i STILL have drama in mylife!) i then conect him to his g-tube extension and put him bed. i give him hugs, kisses and prayers and then i sit for a BIT and get ready. then at 9pm, i start getting his meds ready. he takes FOUR meds at night. 2 of them i have to mix with water and draw them into the syringes (zonegram and the valium) and the other 2 i just draw from the bottles into the syringes. then i administer the doses and soon after, he falls asleep (probably the drugs). then i connect his pulse ox on his toe and then to the machine (can't do that BEFORE because he LOVES to pull on it!) then i sit and watch him and his pulse ox and just LISTEN for anything unusual in his crib. his heart rate has been REALLY dropping recently (in the 40's) and i have been thinking that maybe i need to mention this to the drs..his sats are great thougH! then at 10pm i set up his feeds and get him started. he now has been INCREASED on his night feeds from 600 a night to 730cc and an increase in rate from 75cc/hr to 90cc/hr...he is not tolerating them to well so thru out the night i have to jump up when i hear him gaggin or coughing so he doesn't reflux!! and then the wierdest thing is that when i FINALLY decide it is ok to change into my jammies i have to put my clothes in a NEAT pile by the doorway JUST IN CASE SOMETHING HAPPENS! yep, it feels like i am just always at the ready to GO!!

i think that when we get another home, where matthew will have his own room, i think i will try to get nursing help for the night time...give us a time to be able to SLEEP and not worry AS MUCH as right now. it might BACKFIRE on us and make me worry MORE but that is the chance i have to take. just for the night to help us out......i know we qualify for it but because he is still in our room, i hesitate to move him right now....

anyway, these are just thoughts that i go thru someday. it is hard to believe that we do this on a daily basis.. and this is only the night time routine...NO ONE KNOWS what we go thru........i just wish i could do sooooooooo much MORE for both boys! and can you IMAGINE, matthew is probably on the VERY LOW scale of kiddos that have special needs!! i can only imagine others parents that have so much MORE they have to do for their babies than we do!! i pray for them....AS ALWAYS we always COUNT OUR BLESSINGS!!! THANK YOU GOD!