Despite the fact that she gained almost 2,000 grams from all of this fluid retention in the past 4 weeks Miss Bella has been holding her own. We had a scare yesterday with a spiked fever of 103 but all of her blood work looks fine. We think there could be some fluid on her lungs and a possible UTI causing it. We will see what the new Dr thinks tomorrow...
The past few weeks we have just primarily been focused on trying to get the fluid off of her. We have been trying to change her position often, move her around as tolerated and doing various massages to help break it up. Today she has started to have some big wet diapers so we may see some improvements this week. Even though we have been limited on moving forward we still managed to wean her nitric to 4 and lower some vent settings this week. We are also seeing that once the fluid is off she will be able to initiate some breaths on her own which is hopeful! I heard from one of her favorite nurses this evening that she even got a smile out of her and we haven't seen those in quite a few days.
The past couple of weeks with this past Dr have been exactly what we needed. It was the first time in quite a while that we didn't get the "your daughter is going to die" speech. I don't know if she has a different opinion or if she just doesn't feel the need to beat us over the head with it but it was a VERY nice change of pace. Not once did she mention "chronic care facility" either!!! We appreciated the fact that she focused on what we can "fix" now and not trying to prove her future or existing disabilities. She gets that it doesn't matter to us and should NOT change the way that she is cared for.
Speaking of that...this is where we are today with that situation. The Dr that started the whole chronic care facility discussion also brought in the palliative care arm of the hospital to get involved in our case. Supposedly this is another arm of hospice care but not just with terminally ill kids but chronically ill. We were told that they would assist us in making all of the arrangements for her to come home and if she needed her comfort meds once she is home they could assist with that as well. HOWEVER the only thing we have seen out of them was a 30 minute interagation of how we need to do a DNR order for her and lecture that based on their 5 minute evaluation she would not see, hear, walk or talk...blah blah blah...Chris did not respond to any of this as they had hoped :) So they came looking for me the next day (like 3-4 times) to discuss chronic care facility options. I politely and not so politely told them that we really weren't interested in anything they have to say or even discussing the matter with them at this point. Thank you Lord we have not seen them since and are praying that we won't unless they are truly needed. However I was pretty fired up about it so decided to dig a little further into this "12 month scope of care" that keeps getting thrown around. I was told via email that "there is no magic button that I am aware of that when a child turns a magic age, that they are denied care in the NICU." This is comforting for now that if Bella is progressing we will not get kicked out in May. However I still question why we have been told this by numerous individuals and the chronic care facility has been mentioned so often. I also question why folks that have gone before us have encountered the same scenario. I also asked if doing the chronic care wing was an option and was told that the entire hospital needs more beds and there is no quick fix that would provide the things I had mentioned in my previous blog. I am not convinced of this either but before I open my mouth again about this I am doing some homework and will fill you guys in on what I find...Sometimes we have to speak things into existence and even if this can't be done for Bella it is something that I feel passionate about and would love to make happen for those that follow in our footsteps. Thank you all for all of the offers to assist in any way that you can. I will fill you in on any possible options to make this happen. Again I don't think it is inappropriate at all as a parent to express a very real need of our community hospital that Nashville so generously donates to, so feel free to pass along my previous blog to anyone that may have an opinion or would like for their intended donations to specifically go towards this idea.
So for now our strategy is not to even discuss the chronic care facilities with anyone at Vanderbilt that would like to discuss it. Our goal is to bring Bella home when she is ready to come home. Our goal is to make sure that everyone we are working with has that exact same goal. We pray and hope that will happen by May. We trust that the Lord will provide us with alternatives if not...
Tonight I will dream of and pray for Bella smiles and big wet diapers. The combination of both could get her home if that is the Lord's will. So far He has shown us no reason to doubt otherwise. Our eyes are on Him and His constant presence in this journey...
Thank you for the continued prayers, it is all that we need at this time...
Much love to you all
Telisha
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