Busier Than We Thought

Wow, when I said something a few days ago about getting really busy in  the next few weeks I had no idea what I was talking about. I am upgrading really busy to insanely intense. We do not even have half the stuff scheduled as of yet, but what we do have already has our calendar pretty full and this does not include the FA team doctors we still need to get in to see. We are certainly not complaining, just was not expecting quite so much all at once. These doctors just want to ensure they have the most current and accurate information to handle their specialties that benefit Elias the best. Yesterday we received  two calls from the Aero-Digestive team & Colorectal team with a list of dates for various tests, procedures, & appointments. While most of the tests and procedures will be done outpatient there is at least one that will have to be done as an inpatient. So Elias will get his first stay in the new hospital very soon. For the Aero-digestive team we have a partial listing, a full itinerary in on the way. What we know for them is we will have an anesthesia consult first. They will essentially review his history and examine him to ensure he is able to withstand the stresses of surgical procedures and the anesthesia itself. They have also ordered a CT scan and a probe procedure, I think to analyze his reflux, I’ll have to get back to you on that one. They were listing them so quickly over the phone.  There will be a few more on the horizon too as well as the individual doctor appointments for the team which include Pulmonology, ENT, Pediatric Surgery, GI, & a feeding team. For the Colorectal Team we will be meeting with Dr. Levitt. He and Dr Pena are the pioneers for the pull-thru procedure to repair imperforate anus. For his studies we are doing a Distal Colostogram, Renal Ultrasound, Voiding Urethrogram (VCUG), MRI & x-ray of the lumbar spine, & a x-ray of the lateral sacrum. There will be more to add to the list as these are the preliminary testing needed to help with the planning of care. I spoke with Beth, one of the nurse coordinators at the FA clinic this morning to update them on the information we had received and she was in agreement that Elias was in for a very busy schedule. We also discussed working on getting Elias into the Neurologist, to follow-up on the enlarged ventricles and the Endocrinologist which has a specialization in FA and the treatment effects on the endocrine system.

Last night was another rough night with Elias not sleeping well and not feeling well. There were more strong storms last night too, so this keeps bringing us back to him getting sick whenever there is certain types of weather. As we said the other day, could it be the enlarged ventricles? Ear issues? Or maybe even his limb abnormalities? Someone commented on our post the other day that they have children that have issues like that as well. We appreciated that being shared as it made us feel a bit less over analytical. I suppose there probably is not much we can do medically, but we have to explore the options and causes in case. I did mention it to the FA clinic nurse this morning which prompted the green light for neurology. It is a place to start anyway. As much as it exhausts us, it certainly has a greater impact on him. His daily schedule and activity is really out of sync coupled with the fact that he simply doesn’t have the energy, strength or feel well enough to do the activities he enjoys. If we do get him active or if he thinks he is feeling well enough to be it tends to be short lived and he quickly slips back to wanting to lay down. It is obvious at times how frustrated he gets because he wants to do more than he feels able to actually do, poor little man. One positive we have seen out of him this week has been him pulling up and playing with his feet on his own while laying. He has done this limitedly while sitting up, but very little when laying on his own. This was something his physical therapist in Maryland was trying to get him to accomplish. The other positive is we can still from time to time get him smiling and laughing, that is important!

Finally for today it appears that the PT at least is about to get started here. We have an assessment next Tuesday and a IFSP meeting on Thursday. So far PT is the only service we have been able to secure. We are on a waiting list for OT and we are hoping the intervention teacher assigned to Elias case will quickly get things rolling with the ABR results and the appropriate provider. I also went to the state Medicaid office  yesterday. That was the single most annoying period of time I have ever had. I’ll spare you the details of how crazy it turned out, but it of course ended with me having to take even more paperwork home to fill out and returning yet again. Mostly because people have no clue how to perform the job correctly or convey the correct information. Due to Katharine’s work schedule and the location of the office it will be another week before I can return with the forms. It will take another 30-45 days where it goes to a review board that will determine if he qualifies. If we get approved we get the Medicaid card and at that point we will get referred to another program that might be able to provide the skilled nursing that Elias needs. We have no idea how long that process will take, but it appears everything is 30-45 days. So it might be October-November before we finally get the services Elias needs started. As always we will do what we can do and hold our chins up and try not to pass out from exhaustion in the meantime. :D