Well, we finally made it to LA today. I was able to be transported with Tanner, which was a huge bonus and relief. We took a tiny little plane, which was pretty cool, but really scary as we came in to land. Small planes are bumpy!
When we got to the hospital, they started messing with Tanner and wouldn't let me near him while they were getting him settled. They then told me that I can only go close to him if I am wearing a gown and GLOVES. If I wasn't already bawling from hearing my baby scream and cry from them transferring him from the Life Flight people to the hospital bed, that just got me going even worse. I can't touch him skin to skin. There has to be a stupid blue glove between us.
He also is sharing a room with 3 other patients. In Primary's, he had his own room. One of these patients was just getting out of surgery about an hour or so after we finally got Tanner settled into his bed. So they kicked me out. I figured that worked, since I still had to get checked into the Ronald McDonald house.My room is awesome by the way. That is about the only good thing that has happened all day since I've been here it seems...
While I was checking in, I got a phone call from one of the surgeons to go over the consent stuff to do surgery tomorrow. As she was going over the risks and everything I was pretty much ok. I have been expecting this stuff. But when she got to the part that once they get in there, and it is different than they were expecting, what their back up plan is... that freaked me out.
We are once again on the subject about his aortic arch being too small. If it ends up being too small to be able to repair, they will treat the heart as if it only has a single ventricle, and connecting the pulmonary artery with the aorta as one. And then using a shunt. I'm sure I missed a bunch of the details in there, but that's pretty much it.
But then, that is still just a back up plan, and may not even happen if his aorta is large enough to be able to repair the way they are originally planning. So with that being said, everyone please pray and hope and do whatever you do for his aorta!
Other things that are piling on top of all of this, is when I went back to see him, apparently one of the patients in his room is having issues, and they are performing a procedure on them. So I am STILL not allowed in there.
I have not been allowed to see my baby since about 4:30 pm, and it is now almost 8:30 pm. I have gone back a couple times to see if I can go in yet, and the nurses have gotten to the point that they told me they will just call me when I can go in. I take it I'm getting annoying...But come on! My baby is going into surgery TOMORROW (I still don't even know what time by the way), and all I want to do is spend as much time with him and hold him as much as possible until then.
That's all I ask. But no.
Anyway, sorry about my little rant. I hate it here, and wish we were still at Primary's. I miss Kollin, and I am just getting more and more pissed off and emotional about not being able to see Tanner.
Sorry that all you get out of this update is negativity, but that's all I've got right now. I just need some good news for once, instead of things just getting worse and worse.
WOW! I just got a call from Tanner's nurse saying I can go up. Bye!
I don't know you but I'm praying for your peace and health and safety for your son.
ReplyDeleteOh Ali, I am so sorry. I can't imagine how helpless you feel.
ReplyDeleteali, i am so sorry it is not going well right now. i wish i could be there to hold your hand or something! we are praying for you. love you!
ReplyDeleteI'm so sorry Ali. I wish I could be Kollin for two weeks so he can be there for you. As a new mother and major surgery on your son you have every right to be concerned and want to see your son and all of that so please don't feel bad. Use this as a way to vent and hopefully it'll make you feel better. I'm glad you were able to go see him and I'm sure the nurses there understand your point of view, I'm sure they've dealt with all kinds of mothers so I'm sure you are just fine. If you need to talk to someone tomorrow or anytime really and you can't talk to Kollin, please call. I'm always home. Hang in there, he'll be out soon.
ReplyDeleteali, i have read this blog and aw, i don't know what to even say. gosh, i had a near healthy child in the NICU for 7 days (nothing near what you are experiencing) and it pissed me off so bad that they had control of my son and when i could see or touch or hold him. You are the mom, don't forget it and you aren't annoying, HE IS YOURS. I can only feel a hint of your frustration. I pray for him and you. bless your heart. and his, literally. :) these doctors are good and they do this all the time, keep telling yourself that. best of luck! -Emily Evans (Snow)
ReplyDeleteYour family is in my heart and prayers. Wishing Tanner a quick and easy recovery.
ReplyDeleteI was thinking about you all day yesterday, praying that everything would be ok. I cannot even imagine having to go through all this, on top of the regular postpartum stuff. I was an emotional wreck even with my healthy babies! We'll keep praying, especially for that aorta.
ReplyDeleteThinking of you. I know what its like to not be in control of your own child and how strong that desire is when you have a newborn. I know you have bigger things to think about right now and that your main concern is that everything is being done to help your son get better, but please pay close attention to your own mental health. You will need to be strong and healthy to take care of him when he is released to your care. Having a sick child is a major risk factor in the development of post partum depression. I say this as a mom who has been there, and it is a dark place.
ReplyDeleteAli-
ReplyDeleteThank you for the update I have been wondering how things are going. Don't worry we don't mind hearing you rant because we all love you and are prayer for all of you. Let us know if there is ANYTHING we can do even from a distance!!! LOVE YOU!!!! GOOD LUCK TODAY!!!!
welcome to your little Tanner.
ReplyDeletehope all is going well.
Ali,
ReplyDeleteI am so sorry you are having to go through this. I can't imagine being told I can't see my child. I am praying for your family and for the doctors who will be working on Tanner.
Tamala
I came here from Moosh in Indy's blog. I wanted to offer some words of encouragement if he does end up needing a shunt. My sister had open heart surgery 25+ years ago because she was missing the whole wall between the rt and left sides of the heart. Back then, this surgery was hardly done and it was a miracle that she made it. She had a shunt put in that was supposed to be changed as she grew but every time they have examined it, it has been fine and they've never gone in for another surgery. Sending you guys lots of love - my 1 year old will have surgery soon and while it is nowhere near the same, it's all scary for a momma. Be strong - you will get through this. I don't know if you are religious or not but this verse always helps me:
ReplyDelete"Trust in the Lord with all thine heart and lean not to thy own understanding, in all thy ways acknowledge him and he shall direct thy paths."
I like that because I am a control freak and I can look back at my life and see specifically where I have been directed and my life has taken me places I never thought I'd be. My kids have had different outcomes sometimes than I expected but you know what, it's better than what I would've planned. You will get through this. Hugs from one mom to another.
I wish there was something I could say or do to help, but know we're praying for you guys...even little John blessed baby Tanner in his prayers last night!
ReplyDelete