Jake's big eye appointment

Ok, this is where we are at... 


Jake's heart issues have been resolved with the help of Dijoxin. (which he was on when we got there)


His lungs are getting better with the help of the Decadron (a steroid) and nitric oxide, and sildenifil (also on when we got there)


His Hernia's are nowhere near being resolved but we can't do anything about that but wait. 


His brain is perfect! He is showing hand-to-mouth development which is AWESOME!!!! He is licking his hand and that is really good. It shows that he feels comforted by having his hands to his mouth which is a big developmental milestone. 


He has passed off everything to get transported back out of primarys except his eyes. They say if the eye dr will give us the OK then he can go back to Utah Valley. So we call the eye guy. He says he will be there between 10 and 10 on Wednesday. I say that will be fine. I get there at 10 and plan to just wait all day which is fine. He gets to the hospital at 3:30 and our nurse calls him and tells him that Jake's mom is here waiting for him and asks if he could please check Jake's eyes first. and he says, well i will get there when i get there. He proceeds to check other babies eyes and then comes into Jake's room and checks the babies eyes next to Jake (who's parents aren't there). We think this is great he will come see Jake next... NOT. He then walks out of the room and we don't see him for another hour after that! 2 more nurses including the charge nurse go tell the eye dr that we are all waiting for Jake to be seen so that we can get the OK for transport. At 5:15 (an hour and 45 minutes after he got there) he finally came in to check Jake. After some remark to me like "See I told you I would get to him." he proceeded to check Jake's eyes. I was calm and trying to not show how nervous i really was. 


After the eye exam was over he turned to me and said, "Wow! I'm like fist pumping inside about how good Jake's eyes look! His right eye looks perfect and his left is totally stable." I say, "Great, so we can go back to Utah Valley?" he says, "Oh no, no, no Jake needs to stay here for the off chance that he will need surgery in the future." I fall apart inside and ask why? He says, "well Jake has a 1 out of 5 chance (20%) of needing a surgery in the future and if we do not feel like Utah Valley's surgeon is qualified to do this type of surgery." I tell him that I have talked to them and they are OK to do it. But he just says something to the affect that I'm acting pretty selfish if I am willing to risk my baby going blind! I told him I wanted a second opinion and I would be calling the other opthomologist. 


I called Dr. Carver, a 30 year veteran of eye surgeries at Utah Valley and he was completely shocked that Primary Childrens doesn't think he is qualified to perform this type of surgery. He wants Jake back at Utah Valley, as do we all, and said he would be contacting Primary Childrens Friday Morning. So hopefully this all get's taken care of tomorrow. 


And then the nurse practicioner has the nerve to call and tell me that I must not understand that Jake was sent to Primary Children's specifically for an eye Surgery!!!! I told her that wasn't true and she said that she doesn't believe me. She only believes what she reads on her stupid paper! I told her she could call utah valley if she needed to find out why he was transported there and she just blew me off! And again added that she still felt she was right about him going up there for an eye surgery! The truth is we had no idea about his eyes when we went up to primary's, in fact Dr. Carver had seen him the day before we left and said he would just come back the next week for his normal visit! (this was before we knew he was being sent up there FOR HIS HEART AND LUNGS!!!!!) 


I have really had enough of this nonsense, OH and one more thing...


My little baby is now going through morphine and methadone withdrawals because of all the meds the Primary Children's has got him hooked on. They haven't even weened some of them, the problem is that Jake's body is so addicted to the amount he is being given that it isn't enough anymore, his body says it needs more to do the same thing, so instead of fixing this they just added one more concoction to the mix. So now his med schedule consists of Morphine, Methadone, Adavan, Fentinal (when needed) and Now BENADRYL!!! (to calm him down in between drugs.) 


The Truth is he never should have gotten addicted to these drugs in the first place!!! I can't believe it! 


I know that this hospital does amazing things, and I know that there are probably millions of babies that are alive today because of the surgeons and dr.s at primary Childrens,  but there are some shady things that happen on the inside that you never see.  There are a few awful things that I need to get permission to have put on here, but Jake got hooked on morphine the first week that wasn't necessary, (it took us a week to get someone to listen to us about that), the staff doesn't even greet you when you come into the NICU, I have asked question after question about everything under the sun and I keep getting the answer "I dont know" which drives me crazy!, AND there are no bottles for your milk in the room dedicated to get your milk out and you have to go through security to get the bottle but then back out through security to wash out the bottle and then back through security to put the milk in the freezer! Some things seem incredibly advanced here but then other things are incredibly backwards. 


For the procedures that Jake has needed and gone through that have helped him I am grateful (even though after 6 weeks we now find Jake on the same life saving medicine that he was on when he got sent up there.) But for the inability to get answers, the unfriendly-like atmosphere, and the horrendous jam-packed construction filled drive to get up there.. I am ready to get out of there.  I told Courtney tonight, if you see some crazy person on the news getting carted out of primarys with a coat over her head for disturbing the peace in the NICU.. That will be me. Someone please come bail me out of jail because I don't know how much more of this I can take!


I wish I had the ability to pick up some of the nurses and take them with me to Utah Valley, because there are some really great nurses, and Dr. Null and Dr. Ward have been great and comforting, but there are others, (that tape jake's hands down to his diaper for instance) that i will not miss. And now that I have about got everything off my chest i will be done. 


Hopefully tomorrow we get better news!