Another day filled with phone calls from doctors, nurses, and insurance billing departments.
Last week was a mess. Bailynn was diagnosed with a severe urinary tract infection. She is on antibiotics and off the rapamune until it is cleared up. She will have to have another urine analysis to make sure it is cleared up. This is clearly why she was having such bad seizures last weekend. She is also having some signs of allergy blah (we all get this in the spring, but wish she didn’t). Then I, after the UTI call, find out that once again Bailynn’s medicaid is in jeopardy. Her case worker believes that it is because she is simply on the wrong support waiver (she is on aged and disabled). He believes she should be on the family support waiver. This is not my job to know, and i think he should figure it out. Instead Bailynn’s team at need-a-nurse is trying to help. They are wonderful. So, i don’t know what is going to happen. All of her stuff comes up again this summer. Her diapers are in jeopardy! This is scary to me. Today I talked to her Orthopedic surgeons nurse and she is mailing us a new hip adductor pillows, because no one here is Evansville seems to know what it is or how to get one (seems easier, crazier, but easier this way). Her other pillow is falling apart from months of use. The other concern (still) is her rod protrusion. There is just nothing else we can think to do! She eats! She has foam and padding anywhere and everywhere she sits! Pray for her little back = pray for her to PUT ON SOME WEIGHT! Silly skinny Bailynn. We also found out last week that some of the supplies that we have been buying out-of-pocket – are covered! Add it to the list…. (of course only if she has the medicaid).
Her kidneys and the ongoing issues with to have surgery or to not have surgery.
I got to talk to Bailynn’s pediatrician extensively last week about how Bob and I really feel about all of this. One of the main reasons we took Bai to Cincinnati and to get these magical drugs for Tuberous Sclerosis was to prevent her from having to have lots more surgeries. I talked to her about how the kidney looked and the angyomylypomas in it. I explained how Bob and and I just can’t see her getting cut again for this silly thing and not knowing the worth.
Last week the nephrologist from Cin called and told me how much he wanted Bai to have this immobilization done on her kidney again. He tried, again, to tell me how Riley had not done it properly. He tried to tell me that the angyomylipoma in her kidney could RUPTURE! Is this a scare tactic? Is this true? So I explained to him how much we spent on the last procedure that didn’t work. I explained to him how skeptical we were that this wouldn’t work. I explained to him that we want Bailynn to have a quality of life. Quality over quantity (unless you can promise results). He listened. He promised to find out how much this procedure would be for us out of pocket. I got that call today. He explained how it would be different and why they would achieve better results. They would not do it laparoscopically. They would cut her. I’m not keen on this proclamation. And it will cost us about 4K out of pocket after insurance. That doesn’t include hotel expenses, food while we are there or anything else that can exponentially add up. 4K. We have a 3K loan paying medical expenses, as it is, from last year. When does it end? When do we stop? Where do we draw the line in the sand? How do other people do this too? Praise God Bob has a decent job and we make sacrifices to make these things happen. So I sit here today waiting for him to get home and discuss our options. What do we do? Will it really Rupture!? Is this to benefit her – or us? Who are we doing it for? The life with Bailynn. If these wall could talk…..
I’m off to make dinner. A task that will take my brain off all this for a short while. I’ll let everyone else know our decision as soon as we know. Weigh in below or just say hello. Would love to hear everyone’s comments and thoughts. Rant with me. Scream with me. Cry with me. It helps – I swear.