I am tempted to apologize for the many posts regarding Zachary’s health updates, but to be honest, it excites me to have something to update you on. Mainly because it means we are making progress and not stuck in the same spot we’ve been in for four months. A lot happened today and things are definitely moving forward.
I mentioned in my last post about Zachary that we had received our long-anticipated referral to Children’s Hospital. Our Pediatrician told us that it would take a day or two for us to hear from them so that we could set up an appointment, but if I hadn’t heard anything in two days to call Children’s myself. This was on Wednesday. So Friday morning I ended up calling Children’s to try and make an appointment, however, they had not received our referral from Skagit Pediatrics yet. I was then told that from the point Children’s received our referral, it would take about 48 hours for all of our information to be loaded into their system so that we could even make an appointment. If I were a cartoon character, smoke would have been coming out of my ears at that moment.
I immediately got on the phone with Skagit Pediatrics to find out what was going on. The young woman who sends in all the referrals informed me that she had not had a chance to send ours in yet (that’s 48 hours that this referral sat on her desk), but that she would send it in by the end of the day and she would give me a confirmation code so that Children’s could manually look up our information and I could make an appointment that day. She didn’t call back until 4:54pm Friday night. More smoke.
To attempt to fix her lack-of-attention to the urgency of our referral, she tried to make the appointment for us. She said that the appointments were booking out until Mid-January but she was going to try and get our Pediatrician involved in making the appointment so that we could get in sooner. She also was trying to get our Nutritionist and GI appointments booked on the same day so that we didn’t have to make two trips to Seattle. I had no choice but to wait through the weekend to get an appointment scheduled.
So Monday comes around and I wait by my phone all day….. no phone call. Today, Tuesday, I couldn’t wait any longer, so I called her again. She said that she had our GI appointment booked but was still trying to get our Nutrition appointment booked on the same day. The appointment was made for January 23rd and our Pediatrician didn’t think this was an “urgent” case. (SMOKE!!!) January 23rd is exactly 41 days from today. Do you have any idea what that translates to in our world? Basically, it feels like a lifetime to wait when your child is in pain all the time.
Well, I’m not exactly proud of what happened next, but I feel that I’ve earned the right to step up on my “Motherly Platform” and defend my child… so this is what I said:
“I know you are doing your job the best that you know how, but the way this whole process is being handled has been far below our expectations. For you, this is your job, you get to go home at 5 o’clock and forget about this, for us, this is our life. We don’t get to leave it behind us at the end of the day, in fact, we have to stay up all night and deal with it. I don’t understand how this is not an urgent case, this is an infant who has been in pain every day for 4 and a half months now. I’m sorry to take this out on you but we need someone to stand up for our child and make this a priority. Our child needs to be seen, we don’t know what to do anymore so we are living for this appointment. I know it is not your fault, but we spend every difficult day reminding ourselves of how close we are to seeing a specialist, and now you’re telling me we won’t get to see one until January 23rd, that is not okay.”
I then stepped down from the “platform”.
She sincerely apologized and agreed to call Children’s to see if she could get us in any sooner. I got a phone call within an hour and our appointment had been bumped up to January 10th, and we had been put on a wait-list for any cancellations that come up between now and then giving us the chance to be seen sooner. (I’ll take it!) She then said something that completely shocked me. She said that my “speech” was very moving and that she thinks I’m a terrific mother. She said that her heart breaks for my son being in pain and that if she were in my shoes she would be doing the same thing. (Praise God I didn’t ruin this poor girls day by taking all my frustration out on her)
Meanwhile, Zachary had a follow up with his Allergist today as well. The Allergist believes Zachary’s case is beginning to look less and less like FPIES and more and more like Eosinophilic GI Disorder (EGID) which is a complete disappointment since EGID is something he will never outgrow.
The Allergist wants us to treat Zachary for Acid Reflux and see if that helps improve his symptoms. He said that the GI will want us to treat him for Acid Reflux before doing a biopsy to test for EGID anyway, so doing it now will get us one step closer to the biopsy. I’m thankful for this, although giving my 6-month-old Prevacid is terrifying.
There is a chance that all of this is just a severe case of Acid Reflux and treating him with Prevacid will solve all of our problems. Both the Allergist and the Pediatrician think this is highly unlikely given the severity of his symptoms and the blood in his diapers, but there is no risk in treating him, so we can all pray that such a simple answer will come out of all of this. I must also mention that, the entire 30 minutes we were at the Allergist’s office today, Zachary was the happiest we’d seen him in 4 weeks. He giggled and talked the entire time while patiently sitting in Nathaniel’s lap. He let the Allergist do all of the regular eye, ear, throat, lung, and heart checks and he giggled the whole time. I am sure between this and my meltdown with the gal from Skagit Pediatrics I am REALLY starting to look like a lunatic.
So, I recently started praying with a friend over the phone every Tuesday morning about Zachary’s health issues. This friend is also a mother and my time with her is powerful. I can feel God moving all around us. Not only does she pray over Zachary with me, but we pray for me, we pray for Nathaniel, we pray for our family, we pray for the Doctor’s, Nurses, and Specialists assigned to Zachary’s case, we pray over the food I’m eating, my trips to the grocery store, and every other detail of this journey. I can honestly say, the day we started praying together was the exact day I started to feel like this process began to move forward. I feel like we now have many people in our corner and that we are working towards getting the answer we are looking for. The emotional support this prayer time provides for me is exactly what I need and so much more than I deserve. I am beginning to realize how seriously God takes us Mommas! I don’t think the people in our lives (that’s you) understand how quickly we would fall apart without them. We are honored to be joined in faith by such incredible people and we continually feel God’s grace covering our lives.