FRUSTRATIONS! Yes with a “s” as in multiple. Bone headed people causing even simple tasks to be like rocket science. But first, Elias has continued to do well the past week. We are hoping this new regiment of medication he is on will prevent the episodes where Elias stops breathing. His pulmonologist is still fine with allowing the surgery planned for mid-June, I suppose that is unless he has more episodes, which knock on wood he will not have. Speaking of the upcoming surgery that is the first of several major headaches we are facing at the moment. There seems to be some confusion about a few things involving pre-admission, length of admission, and amount of after care and training. We have also had difficulty confirming that the ABR that was to be scheduled along with this has indeed been done. That would not be good if we miss this opportunity to get a desperately needed ABR. Our next frustration is that it is becoming increasingly obvious that Elias is trying to communicate more complex needs. That would make sense, he is 2 years old after all. However, without the ability to hear or the proper intervention for language other than basic sign (which he still is not doing back), Elias is beginning to show frustration and even behavioral tendencies with his inability to communicate. THIS IS EXACTLY WHAT WE HAVE BEEN TRYING TO AVOID. Our speech therapist confirmed that we have crossed into the delay area and if we are not able to get some real answers soon and get a therapeutic plan in action for language development it may become very challenging to him. This is infuriating to us because we knew this would happen. Dragging our feet and misdiagnosing, placing labels on him that are not accurate….Enough on that, my blood is boiling now.
Next on our list of frustrations is Prevacid. This is the reflux medicine Elias has been on oh…. since he was 2 days old, days not years folks. Two months ago when refilling we encountered an insurance issue needing prior authorization. After several days of frustration and panic it just went through and no one at the pharmacy or the insurance company could explain. Why panic you ask? Well you see with the episodes Elias has when he stops breathing there is a theory that reflux is causing this. Well a failed impedance probe was how we ruled it in or out. The next time Elias was to have surgery the thought was to place it. From a GI perspective it needs to be done anyway as they cancelled the one in August last year because the G-tube was in the intestines and not the stomach. Things got out of control and it just was not important again until March when the episodes began again. Apparently it has gotten lost in translation again, but that is another F word. Back to the Prevacid….We thought everything was good until we refilled last month. Same issue Prior Authorization needed. Elias pediatrician and primary care physician (by title only) wrote a letter for this authorization, but it was denied because according to the physicians letter Elias did not have a diagnosis requiring the use of such medication, despite the fact that he had been on it ALL HIS LIFE! After speaking to the doctors office apparently they missed the section labeled GI in his chart that gives the GERD diagnosis, and should be noted that it has been repeatedly shown with great accuracy that patients with tracheoesophageal fistula typically have GERD. We know Elias medical chart is huge, but really. That isn’t what frustrated us though. With the denial that meant the GI specialist had to write a letter. The information was given to us that someone named Joyce at Children’s Hospital in the GI office was spoken to and faxed the information from the pediatrician. After 2 weeks of trying to verify we finally find out it never arrived. We were given a new contact and fax number. We called our pediatricians office on Tuesday and gave them the new information and asked to send because we needed to refill the Prevacid Saturday. I was told no problem if there was an issue I’d be contacted. After trying to confirm it took good old Robin at the FA clinic to track down an answer. GI never received the fax AGAIN we found this out Friday! So again we called the peds office, Katharine had to call I was too pissed off. Apparently there was a note in the file stating the pediatrician was working on a new draft. What? The nurse did some investigating the next day as they didn’t return our call until 4:50p on Friday. At least they work on Saturday! We were told this morning that they sent it to wrong person, or the wrong GI doctor. WHAT??? You were given a specific fax number how could it have gone to the wrong doctor and how do you know this on a weekend? I translate it all as we screwed up we never sent it but we will tell you it went to the wrong place. You can’t make this stuff up people this is really all very true! So now we are going to give Elias the last dose we have of Prevacid tonight and nothing can be done until Monday morning. Hopefully their theory on why he stops breathing is false or we may be in trouble without this medicine. We don’t think it is because he has been on it and never misses, well until tomorrow, but he has had these while taking the med too. So hopefully we can get that all worked out Monday, but ARGGGG!
Next on the F list is feeding management and Elias not gaining weight. We have been trying to get Elias an appointment with the GI doctor because in DECEMBER he said he would be willing to manage his feeds and growth. Well until friday we constantly got the we will call you back on that line. Finally after AMY the FA dietician came in asked us some questions and reported to Dr. Mehta things happened. I don’t think Dr. Mehta was too happy to know we had not been seen by GI since December and did not even have any follow up appointments. So her push instantly got us an appointment just a few weeks out. Amazing! why after 5 months did it take our FA doctor getting upset to make this happen. Don’t mind the upset blown off parent! Nuts I tell you.
The next issue is the Assistive Technology (for communication mainly) referral we have been waiting for 6 weeks for a packet. I have called several times and only get voicemails and no return calls. This past week I called the referring physician to try and help expedite this.
Finally and there will be no surprise here I’m certain, we are having major frustrations with the nursing! Last week we found out that our one and only nurse who is not all that reliable to begin with has taken a part-time position at a clinic. Her contract with the agency is up in just 3 weeks which will then make her commitment to them minimal without penalty. We expected this to come sometime in the near future, but thought it would be a full-time position. We understand why she is doing this and she should. Her doing this is not the frustration. It is the response or lack there of yet again by the agency. They found out on Tuesday last week and made the nurse tell us herself, but have neglected to even call to see if we are ok with it or what we need to do about potentially getting another nurse, at the very least a back up nurse for now to cover the voids. I mentioned a few post ago about how many days we had been without nursing. As of today since April 30 there have been 48 shifts….we have only had a nurse for 8 of those. That is 1/6th of the time. That’s not even a half ass job! We are beginning to fear that the agency is going to try use this as an opportunity to discharge us on the grounds that they are unable to find adequate staffing and with or nurse dropping to maybe 3 days a week soon they may be unable to fill the newly opened shifts giving them the opportunity to justify a discharge. Not sure if they can do that because no other agencies are accepting ventilator dependant patients. We will see.
So, to close on a positive note as you saw from the previous post early this week Elias has learned to stand up on his own. Much like he did when he learned to sit up Elias spends the majority of the day standing up and purposely falling down just to stand up again. It is very cute and he always has a proud smile on his face when he does it. He is really doing a wonderful job with this and he will probably walking and running pretty darn soon we think!