so today has been a horrible day! the only good thing is that my mom is here! So today started off bad because I only got 4 hours of sleep last night. then I find out that Edward is having his upper GI, an eye exam, and an echo cardiogram. well the upper GI did not go so well and that means Edward now has to have more surgery. he is having this thing where thy take part of the stomach and tie it around the esophagus so that acid can't come back up. he also has to get a G-tube in is stomach (feeding tube) so yeah then my day gets even "better" we find out in order to do these surgeries they have to transfer Edward to Childrens. so my mom and I went over to childrens to tour the NICU and first off the charge nurse was rude and mean and second they have 2 types of beds at thier NICU; Private rooms and open spaces with no privacy. well then the nurse tells us he will have to be on a waiting list to get a private room unless there are special sercumstances. well I refuss to have an open space and I think Edward being in the hospital for 4 months already should be reason enough to just give him a private room. but whatever nobody cares how I feel! well then the next crappy thing that happened was I called the shuttle and he told me he could bring me back to the hospital at 6:15 because we have a meeting with the surgeon. so we get all the way back to the Ronald McDonald house and then he says oh sorry I can't do that it has to be 6:30 which won't work because the surgeon is coming and then we asked to be taken back and he couldn't because he has t drive to Denver! I am so angry! so any who then I get back to my room and see on the door that they are going to clean the carpets tomorrow and we have to be out of our room by 9 and we can't leave any valuables or anything on the floor... so yea I lost it! today is not my day! so now we have to find a ride back to the hospital and I really have no idea what to do about everything else... I'm just really done with this whole situation. I really don't know what I'm going to do without his nurses (Donna, Carrie, ad Sandi) they keep me sane! and from what Ive seen I already dislike the nurses at children's... please pray for my sanity.
~Misty
I'm so sorry...My road has been different...but just as long. Just keep pushing through and take it one day at a time. We're all here cheering you on!
ReplyDeleteI'm really, really sorry. You don't know me from Adam (in fact, I don't even remember who led me to your blog!) but I follow all of your posts. My daughter was born with Spina Bifida and spent only a week in the NICU, but we've been fighting/dealing with hospitals and docs and insurance ever since (she is 17 months now). It's not fun. I'll pray everything works out smoothly and for your little guy's health! Don't give up!!! "Noisy" moms are the only thing that seems to get things done sometimes. :)
ReplyDeleteMy heart feels your pain. But one greater than you or I who feels your pain is Jesus. As I was reading in my One-Year-Bible passage this morning, this scripture in Hebrews seemed so timely for you. Hebrews 4:14 says, "Therefore, since we have a great high priest who as gone through the heavens, Jesus, the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who has been tempted in every way,just as we are--yet without sin. Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need."
ReplyDeleteLove and prayers, Bev
Oh, I'm so sorry for your day! After just 3 weeks in the NICU I was more than ready for a private room! 4 months of being there really SHOULD give you priority. I'm sure with a little time you will come to find some nice nurses at the new hospital (it always seems like there are more good ones than bad ones anyway). I'll contine to be praying for your little Edward. God willing the transition to the new NICU and the surgery will go excelent.
ReplyDelete