........well, now that I've gone on about his care just to where I didn't even hit the iceberg but gave a window into our world....I'm going to rant a bit about my current worries. And trust me my worries have gotten ridiculous in length but each are important. But right now at the top of the list is his hearing and this G tube.
........first, the G tube. I thought we were smoothly easing into this G tube thing. We've been keeping him clean, figuring out how to best keep him clothed and comfy (cut a hold in all his clothes), keeping his tube up and straight as we can (gauze ball underneath the tube...I'll post a pic), and vent him to keep gas at bay (just hooking him up to an empty syringe and letting gas come out of his tummy). Well, he's rarely had the gas issue but has been spitting up. His spit up still comes through his nose despite his new prosthesis and of course, out of his mouth too. I hadn't noticed a major increase in his spit up so have just noted it on my daily notes sheet. ........I have noticed he seems to do it more after I've given him bottles but he rarely has had more than an once and a half at a time (and I am still just doing two bottles a day though I want to increase this so he can be independent of the tube). .......well, yesterday, I put him in my bed for a small nap. I layed down with him since he would be flat versus his elevated bed. He woke up a bit fussy and then had a massive puking/spit up session. It was scary. I had possibly given him about 10 more cc of formula in an hour's time than normal and he did have a bottle of an ounce before getting the rest of his nutritional needs through his bag (g rube fed)....but he puked a ton and his little tummy sort of spasmed. .......well, I changed the sheets, had to let the bed dry out before adding new sheets and wrote it in my notes hoping this was a fluke. ......sure enough, his next g tube feeding with no bottle resulted in a bit more spit up afterwards. .......then I gave him a night time bottle, he barely drank 5cc before falling asleep, I hooked him up to his apnea monitor, and then his machine for his usual 40ml an hour he receives for a continuous feed during the night (g tube feeding).....and 2 hours later, I'm startled to hearing him choking in his bed. ........His poor face was covered in formula that seemed a bit mucousy. ....it was a ton again. He was sort of doing the retching/spasm thing and I'd say he easily spit up most of what he'd received those last two hours. His bed, floor and I were soaked. I had disconnected him from his monitor and his feeding machine as I picked him up. ...I tried to call his pediatrician but got no answer. It was 10pm...maybe she was asleep...or didn't have the phone. I tried to call Mikey but he was working. I racked my brain on who to call. I considered facebook but the responses can sometimes be nil or hours later. .......I ended up calling Primary children's and asking to speak to the surgeon on call since his g tube was placed by the surgical unit. .......I got a very nice intern. Poor Connor was continuing to spit up and it had become more mucous looking and he was also just weak and tired. ...man, this stuff is scary. Anywho, talking to the surgeon, she said to decrease his feeds for the night by half and if we had it (we didn't) give pedialyte. The next step was to call the pediatrician in the morning to get a same day appointment. ..............Well, needless to say, I have hardly slept. I finally went to sleep around midnight. I wanted to hold Connor or sleep with him but felt he needed to be on his apnea monitor and in his bed which is at an incline. ...He was asleep before I even layed him down and has slept all night. I have to check his diaper this morning to make sure he's peeing and definitely get an appointment today. He can't get dehydrated. ....this is so very upsetting. I don't want him on a tube forever. I don't want him to get the nissan surgery (pronounced NI-Son...and the first question out of the surgeon's mouth when I called). The Nissan is where they twist the top of his stomach and I have not researched it too much but he hasn't even been truly seen by the GI department. .........ugh, I'm sitting here wanting to increase his bottles, throw a spoon in his mouth.............Connor cries for the bottle and wants our food when we eat for meals.........and meanwhile, his body is not allowing this. ........depressing in a way I can not presently describe.
..........as for the hearing. We were beyond surprised when the early intervention people said he was on the list for being added to needing help from the Utah school for deaf and blind. First off, he hasn't been tested, but his eyes seem fine. ..........we're aware of hearing issues but have not discussed them with the ENT. ......yesterday I called our ENT office to schedule an appointment and talk to a nurse. The nurse emailed our doctor and we were called back and told that he'll be performing another kind of hearing test on Connor on Friday. Ear tubes can affect his severe hearing loss results so he needs to be evaluated more closely this time. ......I have googled all I can think on this subject and am just left feeling like he'll probably have hearing aids. Most kids with the severity of Pierre Robin he's had have up to an 83% loss of hearing (a few reports stated this same number) and are usually helped with hearing aids and tubes. I'm a little confused that he has the tubes already and is still showing such a loss for hearing but I'm in the beginning stages of this latest diagnosis so don't know too much about this topic. .......this was the scariest thing to me yesterday morning and by midnight last night, I feel like now the g tube is my scariest thing.
..............I hope to get an early appointment with the pediatrician this morning........and I also hope I can fit in a good nap today. ............Stress is getting to me. I have a love/hate relationship with facebook because I want answers and to hear from people dealing with these same things but I'm learning each special needs baby/kid is unique to their own issues. The parents of these kids are also stressed. I think the comparison game plays in our heads and sometimes you feel support, sometimes you simply don't. ...............I will say I have atleast one friend that I've met through technology that has been an immense help to me. She has more than one special needs child and she manages to relate to me, make me feel less alone in this initial journey of discovery with Connor. If I only have her in my arsenal of truly relating and understanding my ups and downs, I think we'll be ok. ........I do feel support from my friends and family....and trust me, I need it. ..............please continue to pray for us....tomorrow is also what is known as Ireland's 3rd angelversary....
....and yes, I feel like that person that has nothing good to say so should possibly say nothing........but this is my life right now and I have to get these things out.