Tuesday, December 13, 2011

You must be this tall to ride...

Being of only 4'11 i was always to short to ride certain rides which was ok most of the time as i'm afraid of heights but apparently I'm perfect size to keep riding this roller coaster that we are on.And once again, just when i thought we got off and were doing good.. Story of my life..  I know there has been quite a delay since my last post so here goes with all that has transpired..
Well I guess I should semi start from the beginning to give a better idea and so that way for those who future read this and experience the same thing wont have to experiece the same results as we are and to keep pushing regardless of what any of the doctors tell you. A second opinion should always come into play and from here on out, that's how its going to be when.
About 2 months ago we noticed that Mackenzies right eye was brusied and semi buldging out. It wasn't as noticable when you look directly at her but if you looked from head down it was quite noticeable. Well this was also around the time her ROP got diagnoised and she was getting weekly to biweekly eye exams. So since she was seeing Dr.Clark while in the NICU that's who the doctors had looking at her eye. Well he told us that it was just soft tissue and that it's common in preemie and that it will go away over time and plus he just saw her a few days earlier and it didnt look alarming to him. (this was the first time i asked about it and since he did just see her i just agreed with what he said and plus the ROP exam is not fun and always makes her eyes puffy anyways) well overtime, it still wasn't going way and I kept asking about and they just kept saying the same thing. She came home with the buldge and it never seemed to bother her nor was there any leakage or anything so we just felt that it would clear up over time.

Head shot down..

Fast foward to wednesday of last week. Sharon (the assistant who always came in with Dr. Clark for her ROP in the NICU) also works at the lung doctor we go to. Oh also.. Wahoo, Dr. Brown didnt' yell at me and we got to stay off the oxgyen. So now we are down to just the apena machine. Well anyways, she loves pumpkin and always comes in to say hey and she felt that her eye looked a lot bigger. To me it comes and goes and looked about the way it alway does. So she went ahead and called over to the eye doctor, Dr. Cheesemans office who we were suppoe to see in Jan (eye doctor who we eventually end up with in the long run) so they sent over Dr. Ross who is a resident over there  which I thought was super amazing that they would come to a different office to just do a quick exam real quick. Dr. Ross checked her pressure as he thought it had to much pressure but it was actually in range of where it needed to be. So next step was to look at her scans from the NICU as we thought she ahd a cat scan and all but all she had was ultrasounds and brain scans so from that point he scheduled a MRI to see if that would give him a better insight so he scheduled it for the next day. So then we get a call later that night from the childrens hospital, which by the way if you haven't been to Richland Children's hospital, that thing is super nice but more on that shortly. So we get a call and pretty much get told that the MRI is a no go because the anesthesiologist dosen't feel comfortable sedating her because of serveral reasons (she just came off oxgyen, her pda, her size) So called Sharon to let her know and she was going to talk to Dr.North/Cheeseman/Ross on what the next game plan in. So thursday rolls around and we are told to be on standby as they were working on teh whole MRI and then we get the call around lunch and get told to be at Childrens Hospital by 245 as they were goign to try to MRI without sedation. And to all preemie parents, a heads up that if your child is under 60 weeks and they ahve to get a MRI outside of the NICU, then it will be a overnight stay for them to monitor her/him with the sedation and all. (yeah we didnt get told about that part until later that night)
So off we went and needless to say that was the worst thing by far i've had to witness my baby go through. at least int he NICU i was a litttle shield by things. We had to go into the Day Hospital at the childrens' ward and the people there were so super nice but that didnt help much. They had to put a iv into pumpkin which i wasn't aware of in order to put contrast into her so that the MRI would be easily readable. It took about 3-4 nurses/assistants and needless to say they weren't able to get a good vein to keep the iv. They had to stick my baby 3 times even in the head and she was soooo miserable. It really broke my heart and I had to leave when they told me they had to try through her head. I just sat and cried. Daddy was so strong though as he stayed with her but it just broke his heart and it was pretty obvious. We said no more after that, if you can't do then we wont do it.. It was just horrible and i was so annoyed and hurt becuse i just kept thinking that if that everyone would have just addressed my concern while in the NICU then we wouldn't have to be going through this while she is home. Needless to say I just held her and comfortable her the best way i could and they finally got the go on doing the MRI without contrast just to see what it could possibly tell us so off we went about 2 hours later. Since it was already pretty late in teh evening we wouldn't get the results till next day so off we went home and poor pumpkin was just so worn out the rest of the night. I just was so upset and cried.
Come friday morning, we met with Dr. Cheeseman to get the results, and come to find out, it thinks by what he can see of it, its some sort of tumor. By the signs thus far of it and just the mass they saw in the mri, that's all they can really say. They can't officially confirm what it is since they weren't able to do contrast so they couldn't give us a form of treatment yet. We got referred to another doctor in the practice, Dr.Bradley as she is one of the sugerons  and surgery was a option to get tissue sample of the tumor to identify what it is and how to treat, but we couldn't meet her until Tuesday so the weekend came and you guys will be proud, daddy and mommy both went out and we got their godmother Katie to come and babysit. It was the SWAT christmas party so off we went. Yeah i cried pretty much all the way there and when i got there and saw everyone (I haven't seen the team since Alexis's funeral so it brought a lot of emotion back to me) Their embrace made me sadder even though i know it came from such love and finally after going through everyone and getting a drink, i finally was able to calm down. I even laughed. But we also drove seperate and i left before daddy as pumpkin was hungry and I didnt tell Katie about that yet because i figured i wouldn't have lasted that long
So today we met with Dr. Bradley. She feels that it's a vascular (blood vessel) tumor. Meaning that it's normal blood vessels that have enlarged and is developing in a abnormal spot. But she can't tell us 100% because there was no contrast the first MRI. So needless to say, we are scheduled for another MRI and this time with sedation now. And now how sedation is going to work which just annoyed me more is that the OR anestheislogist will be the one performing the sedation which they will be able to do as they always perform on little kids but the ones who told us no earlier were apparently the Pediatrics ICU anestheislogist, so it's like why couldn't the OR angeheislogist do it from the get since we got the no from the pediatrics people. So now we have to go back to the misery of getting another MRI and will ahve our overnight stay at Richland hopefully soon. Dr. Bradley said she wants to do another MRI with contrast because if it is officially the vasuclar one then she doesn't want to stick a needle in her eye to get a sample and possibly penetrate the vessel and pop it so now here we go again. She did tell us though that if it appears different while doing the MRI then she will also have a OR on standby and she will go in and get a bioposy while she is still under. They told me that i will get to be with her while sedated and then i will have to hand her off and then i will have to wait..I'm so scared but I think the fact i'm more annoyed with it all as well is helping me hold off on tears right now. I just wish they could have done this while in the NICU since she was already in such care.. So now we are just waiting to find out when MRI is going to happen as scheduling needs to work with Dr. Bradley/OR/anesthelogist.. so to be continued..
Her little dress today meeting Dr. Bradley with her super cute tights..

1 comment:

  1. She is adorable and eventhough there haven't been alot of pictures I can tell she is getting bigger. I also realize that you are tiny so it may be harder to judge how big she is getting. Good luck with this week and hoping for good news.