The dreaded tube

Okay so its been a completely busy month and just today i had 4 appointments. I have been going crazy filling out medical stuff for school and we also got a letter for potential home waiver slot. So I went to Job and Family Services and have a second appointment with a casemanager soon. I am trying not to get excited but some nursing hrs would be a blessing. Lukes G-Tube was placed this last week Monday after 3 years of contemplating this surgery Daddy finally agreed. I thought he would be okay after the surgery but he clearly is not. He doesn't really want anything to do with it and when I say "look at it - is it suppose to ooze or be this red" he looks sick and says I can't look. So maybe more than anything with this decision is the hurt he feels knowing we did this to him. I am past that I know I did not do this or any of this to him. I never wanted a child that has to HURT in this way or any of the ways that he does. God gave him to me. The day after surgery was rough and I think wow this is only a G Tube surgery some kids have it so much worse. But again I find myself wondering why there has to be so many "HURT" children in the world. Why would he want them to hurt? I keep wondering if I am missing his message because somedays I can't see past the HURT! After we ran Lukes first Tube feed the night after surgery his poor belly grew distended and hard and he was screaming in pain. I really thought oh no they put the tube in the wrong place. But it turns out they just tried to feed when his bowels weren't moving yet. The morphine he had and I kept asking for cause he seemed so uncomfortable was actually slowing and putting to sleep the digestive system so he was just not ready to eat. The second day went better he tolerated the feed but was still very sore. He still seems sore as he is healing and now we are dealing with the rate and the dose and pump malfunctions. I had to switch all the meds to liquids and CVS is still working on that. Daddy is coming around and I just think he needs more time I really feel in general he hasn't made it as far in the grieving process we have had to do in the last 3 1/2 years. I am coming around realizing the life with baby is not what I would have ever imagined. My diaper bag is not filled with toys and books and Gerber puffs but instead its filled with rectal suppositories, gluten free snacks, packets of simply honey, and now gauze and syringes to flush his pump. He is now doing 4 feeds a day instead of 3 during the day and one at night due to the beeping was waking him and I refuse to interrupt the decent sleep he has been getting. He is still eating well by mouth and drinking and actually seemed more hungry. He looks so cute with his pump strapped to his back by this minibackpack if only there wasn't a gaping hole in his tummy with Tubes hanging out! It has been hard for me too as you can see I feel responsible cause I have been left to make the difficult decisions alone somedays with little family support. But thank God for my friends who tell me they know I have made the right choice. Today I am feeling better about the decision the past 5 days have varied. However, I have anxiously been waiting for the doctors to call and tell us the results of the biopsies and it appears that in also a full years time Lukes stomach is not showing any improvement despite the gluten free diet. At this point the doctor still has to believe its still celiacs but is looking into refractory celiacs and other rarer things that could be happening. He must have named 10 different scenarios which all lead to more testing. But the goal is to heal his gut its the small intestine that its the worst. He will not absorb any nutrients if they can't heal his tummy and not mention what it could lead to if they don't figure it out. A suggestion at this point is to remove milk and all milk protein and possibly fructose (we are going to test for that) - Apparently some children with Celiacs have a harder time healing if they lactose issue. I cant imagine being one little person and having this many things wrong with me. It seems so unfair. At least if God was going to make him complicated why couldn't he make it easy for the doctors to make him feel better why does he have to be such a mystery. It SUCKS! Well I am extremely tired and could use a good cry tonight after another argument with Daddy over the tube, bad doctor news, 4 crazy appointments tonight and more to come 2morrow, I am so tired- More Emotionally than anything- While Luke was in ACH getting his Tube my Grandma Vanek was in St. Vincents ICU. So I was driving back and forth between the 2 hospitals trying to spend time with her. On her 95th birthday she got moved out of the ICU and into a normal room and has returned to my moms house for awhile to regain her strength. I know her time will come soon for we can't live forever but I love her so much we have spent so much time together through the years and she has taught me everything I know. Her and I are very much alike! We have made great memories together ones I will hold dear. Tomorrow after our appointments I plan on taking all the kids to visit her and I can't wait! I am tired and this vent has helped tremendously. Have a Happy Thursday everyone! Sweet Dreams!