And it’s only Wednesday! Medically speaking things have been stressful, and today’s VCUG and urodynamics study results only added to the stress. The results confirmed what has been suspected for some time, Lucy suffers from a neurogenic bladder. Even though we suspected this; hearing it, discussing the results, and comprehending what we are going to have to do for Lucy is difficult. The nerves in Lucy’s bladder do not signal her brain to empty when it is full. We are going to have to “help” Lucy empty her bladder. From what Lucy’s urologist told me, Lucy’s results showed that she has most likely been suffering with this for some time.
The study was not pleasant but Lucy did better than she would have done last week or even at the start of this week. I believe that this is because over the weekend we started Lucy on Risperdal, an antipsychotic medication that we are using to help with the agitation, irritation, and manic episodes that have been plaguing our little one’s life recently. Since starting her on this med, Lucy has finally gone back to sleeping at night and even napping during the day. This is a welcome change since it has been over a month since Lucy has had any sort of sleep pattern. Of all of the meds that Lucy has been or is on, this med (because of the type of med that it is) was the most difficult med for Drew and I to decide to put Lucy on. This is not just because of the type of med it is, but also because of the side effects that this med can cause. Most worrisome for Lucy is irreversible tardive dyskinesia, a movement disorder . Dr. R and I discussed the use of this med all week, and on Friday he and I decided that its benefits could out weigh the risks. I have literally been nauseous this week just trying to adjust to all of this.
Yesterday after our regularly scheduled appointment with Lucy’s orthopedics doc, Dr. R wanted to see Lucy in clinic again to discuss some things. He is concerned about our girl, in his words “she is not going in the right direction.” Lucy is up almost another kilo of weight, this has us all concerned. She is third spacing or retaining fluids and has been since getting sick in April and we are not sure why. Dr. R ordered a ton of labs yesterday to help us pinpoint a cause or possible causes for this issue. Lucy is anemic, she has been for nearly a year, but her blood counts are not terrible for Lucy, in fact they are up slightly from last week. Lucy’s albumin level is low, but before infusing her with albumin we are going to be doubling her daily Lasix dosing to see if we can drawn off some of the fluid this way before bringing her in for an infusion of albumin. Lucy’s liver numbers are rising even more, but this could be because we ran a lipid bag with her TPN on Monday . Lucy’s skin is scaly and peeling, indicating a need for essential fatty acids that can only come from the lipids in her TPN. Lucy’s triglycerides are high but not nearly what they were when she was lipemic. Lucy has gone from running lipids daily before getting sick in April, to running lipids once a week and just TPN fluids the remaining six days in the week. So many changes, so much uncertainty.
In addition to all of the medical chaos, we started with a new nurse this week. So far so good. I can only imagine what she must think of our of our crazy, busy, exceptional life after coming in on all of this medical drama this week.
Tomorrow Lucy starts back with her new speech therapist here at our home. We have had a few sessions with her since transitioning Lucy from our county’s birth to three program (EI), to our county’s intermediate unit (IU), the birth to age five program. When Lucy turned three she aged out of EI and transitioned to the IU where we started with a whole new team of therapists, rules, schedules, procedures, assessments… I miss Lucy’s old team not only because we were all familiar with one another and with Lucy’s issues, but because they were exceptional! On Friday of last week I met with Lucy’s service coordinator and the OT who preformed Lucy’s original assessment to help them finalize Lucy’s individualized education plan(IEP). In the midst of all of this changing of therapies, Lucy has changed so much from a medical stand point that nearly all of the goals for her IEP have to be revised…ugh. Tomorrow we are hoping to accomplish this.
All of this and it is only Wednesday…