That is what we got today in Milwaukee in our 12 hour clinic visit(s).
Options to help her, options for her care, options for choices.
Our first meeting was with the Special Needs clinic. This is a program that offers coordination of services/specialties for “complex” kids – help trying to condense clinic visits, overseeing the coordination of all the specialists and their tests/notes/labs, one main point of contact for questions/issues/emergencies. We went over many many many aspects of Kendall’s medical history, current issues, and future goals. The history part was easy, and of course her current issues are ever—changing, but the future part kind of made me stop and think. I guess my future goals would be for her to live as happy and healthy and normal a life as possible – I don’t know….it really made me stop and think. Do I have different goals for her future than I do for my other kids? I haven’t had much time to think about her future, let alone create goals for it! I get very wrapped up in just the minute to minute, hour by hour SURVIVAL most weeks around here; am I a bad mom for not thinking more about her future? Am I just in denial about what the future may or may not be like, or contain, for Kendall? The doctor asked me if she had ever been intubated. And I thought he was talking about the severity of her respiratory issues. He asked me again, and I looked at him like maybe I had answered in Polish or something, and then he asked me a third time “If she ever had to be intubated, would you want her to be?” Oh. I get it. You’re asking about lifesaving measures. How far are we willing to go. I think I answered something like “ well of course we would! there’s absolutely no indication to think it would be a permanent measure for her!” But it was still a little surreal to me. I am not sure why something like that would be brought up in an initial meeting. Maybe because this doctor is “critical care” as his main specialty, his mind naturally works in worst case emergency scenarios. Either way, it was a minor blip in the overall course of the day, but a sobering reminder of the fact that in spite of current great strides forward with weight and developmental milestones – she is still a complex kid. There are still a lot more unknowns to battle through, a lot of mountains to climb, a lot of paths to walk down.
We will find out for sure in a few weeks once their review/write-up is complete if we are officially accepted in to the program, but for now, they are stepping in to oversee that there is some coordination to all her care. For instance, neurology ordered an EEG last week to check on suspected “electrical activity” going on with Kendall. Clearly this is something we need to figure out sooner than later, and they ordered it for the next 2-3 weeks. Scheduling lady tells me April is the soonest they have. So Special Needs is now on the case to find an earlier EEG. They will be coordinating with Dr. Natalie down here so that we don’t need to trek three hours each way for every lab test or clinical assessment. They will be getting all her records from all her doctors to review and compile (best of luck to them on that!). Anyways, in a word, they will be a HUGE help!
So on we went to GI, where a massive backup of patients was actually a blessing in disguise as we were able to let Kendall take about a 45 minute nap in her stroller. We saw a new nurse and a new dietician, so we had to go back over a lot of stuff to catch them up on the history as well as the current issues. Current Issues being: aspiration/coughing/choking on baby foods/solids, more bile dumping and venting being necessary (venting is how we “burp” her since she can’t burp regularly due to her Nissen wrap on her stomach), and her constipation getting progressively worse. I was very interested to hear what Dr. N’s take on all of this was, since I am pretty much at the point of frustration/shoulder shrugging with it all. I assumed we would probably need another swallow study, and that we might need to start her meds back up for motility, but beyond that I feel again like it could be any number of issues causing what we’re seeing and I don’t even know how to begin narrowing them down. Luckily Dr. N does! Or at least he has better ideas than I do!
The plan for now is that we are upping her miralax to try to keep stool soft enough to move through at a better rate. She is currently on an adult daily dose, and that gets things moving about once every 2-3 days. We’re doubling the dose and hoping to get her back to the 2-3 day routine vs. the 5-7 days that she has stretched into. But if that isn’t working, there are OPTIONS of other things we can try. So we were heard, and we have ways to help our baby get some relief for now.
With regard to the swallowing issues – we will be working with their speech therapist up there who works with both pulmonary and GI kids (she will be getting input/info from our therapist here who works with Kendall every week) to see if we can narrow down what kind of swallowing dysfunction she is having. There are two things that could be happening (well, i am sure there could be more, but these are the main two we’re trying to narrow down): Is there a problem with one of the phases of her swallow resulting in a pooling of the thicker food in the back of her throat that is taking her too long to clear resulting in the coughing/junky breathing…OR…is she actually aspirating (inhaling food into her lungs) as she’s trying to swallow? As a part of this, there is a small concern that one of the heart defects Kendall has is putting pressure on her trachea and/or esophagus and causing it to literally be too swollen to swallow correctly. So Dr. N is consulting with one of the pulmo’s from up there to see if they want to do any studies, including a possible bronchoscopy to see what is really going on in Kendall’s lungs. So that kind of took a different turn than I was originally thinking, but again, Dr. N is really HEARING us, and our concerns and working with us and for us to find some help for Kendall.
And after that fun appointment we trucked on down to Immunodeficiency clinic. Nothing new really came up since our last phone conference with the resident where we found out that she appears to have the immunodeficiency with regard to not retaining her vaccine titers. Dr. R (the main head guy), does believe that IVIG may still be an appropriate course of treatment for Kendall given the new info in light of the metabolic/possible mito issues, but is deferring the final decision to Neurology/Genetics/Special Needs. If they tell us that we need to defer vaccines until after her 2nd birthday (or later), or that she will maybe never be a good candidate for vaccination, then we will get the ball rolling pretty quickly to get IVIG therapy set up to get SOME antibodies into her to help her fight infections. Of course the preferred route is that we get the all clear from Neuro with regard to the electrical activity/seizure risk, AND that Kendall gets no major infections this winter, and we get to drop at least one specialist from the roster. But barring that – at least we have Option B in place to help Kendall (and keep me from going insane with feeling stuck between a rock and a hard place).
But our day wasn’t over yet! Down to the lab we headed after Immuno, for what SHOULD have been one of the easiest lab visits ever. We only needed two vials of blood for three tests! That is the least amount she’s ever had to have drawn! Ben valiantly decided to be the one to hold her down (since I have to do it so often and it’s just heartbreaking to do) – and boy did he get his money’s worth with this one! Kendall’s vein clotted less than halfway through the draw, so the tech stopped and decided to switch arms to finish getting what she needed. So MORE screaming and holding ensued. Except that vein rolled. So then the tech called for backup, and the new tech blew the second vein, and a third one. Finally on the fourth poke, she was able to drain enough blood to complete the tests. Poor Kendall’s arm and hand on the right (with two blown veins) was SO puffy and red…she’s definitely a trooper! I hope for her that we can avoid labwork for a good long while now!
And with that fun sendoff – we were on our way home.
It was a very very long day. I am so thankful that Ben was able to come with me, and that the other three girls were able to find alternative activities for the day. I am thankful that we are able to make the drive to find good care for our baby girl. I am very very thankful tonite –for so many things. But i am tired. So much information to both give out and take in today. I can hardly form coherent thoughts in my head.
thanks for reading – if you made it through all of this and understand even a miniscule amount of my rambling!
i hope you all have a very wonderful Thanksgiving holiday! (and happy regular thursday to all my international friends!)