ENT. Pulmonologist. Immunologist. GI. Neurologist. Pain Clinic. MRI with sedation. Sweat Test. Geneticist. Colorado. Labs. Throat culture. CT of Sinuses.
Starting 2016 I had high hopes that we would have a handle on what was going on with Jackson and Addison. Ending 2016, I don't feel like we are any steps closer. I often think of the Family Circle comics in the Sunday paper. The ones where the little kids take a jumbled route to get where they were going. That's us right now. Jeesh.
Our appointment with our pulmonologist was at the end of October, right as we switched schools. Addie's lung function was doing awesome, so he took her back to a lower dose of her inhaler that she takes twice a day. Her weight started to go in the wrong direction, so he ordered the fecal elastase test that checks pancreatic function to see how her's is doing (it's still good) to see if that was contributing to her weight loss. Jackson had started to not feel great again. They did a throat culture which came back as staph, but not enough to treat. He also ordered another sweat test for both kids and added albuterol to Jackson's list of meds. We went out the following week for the sweat test. The doctor actually called me with the results. He told me he expected at least Jackson's test to be in the diagnostic range this time based on his other symptoms now. But he said both tests were normal. He said he had zero explanation for this and was just perplexed. Don't get me wrong, I would love to have CF off the table, but unfortunately we're still not there.
We saw the Neurologist in November. It was a good appointment. She didn't think the staring spells were anything epileptic based (woohoo) and Jackson passed all the "exam" tests. She was a little concerned about the dizziness, especially because we see a chiropractor and neck manipulation can cause other issues. So she wanted to do an MRI/MRA to check that out. She also thought that vestibular OT could help with the dizziness since our vestibular system regulates that. She also asked if Jackson had seen a geneticist, to which I said no. She thought it would be a good idea to see if he has any cilia disfunction disorders. All in all, it was a really good appointment.
From the time we saw our pulmonologist to the Neurologist, Jackson continued to complain of sinus pressure/pain. After talking with our ENT again, he went ahead and ordered a CT of his sinuses to see if anything new/different was going on. Once again, his CT came back clear, which is a good thing...but it didn't help us help explain why his sinuses hurt. After talking the ENT about the results, he wanted to make sure he talked with the Neurologist about exploring headaches as a cause of the sinus pain, and that maybe it was more "facial pain." So the doctor followed up with the neurologist and we continued to plow ahead. Jackson ended up with an infection over Thanksgiving weekend which had him out of school pretty much the whole week we got back. Antibiotics, fever, fatigue and more just plain not feeling well. We had an appointment with the ENT coincidentally when he was sick, and still he said his sinuses looked ok and he didn't know why he was still complaining. We talked about the Immunologists idea of a second opinion and he thought that was a good plan. He had a lot of positives to say about a few patients who had been referred for other things and the ability to get "everyone together in one place" to figure it out. He still wanted us to call him for a sinus infection, but we didn't leave with any sort of "plan" for what if's.
We saw the GI also the same day as the ENT. GI wise, Addie is still not doing great in the weight department. She was back where she was at for her last GI appointment, but that's not exactly what he wants to see. Jackson is doing well weight wise right now, but we are struggling with the constipation. We have to find the right balance because the meds hurt his tummy, the constipation hurts his tummy. It's a catch 22, but Jackson heard the doctor because he's getting to the point where he would need another clean out in the hospital, which he does not want (none of us do!). Hopefully now a month later it's a little better and we can continue to work on that balance.
After Jackson's appointment with the ENT, Dave and I talked and decided to give the Immunologist the ok to make the referral to Colorado if they still felt it was a good idea. After talking with them, they thought it was so they started that process.
We did the MRI/MRA the same day as Jackson's follow up appointment with the Neurologist in December. They do this under anesthesia because it takes awhile and you have to lay perfectly still the entire time. Anyone who knows Jackson knows this is almost impossible (I have to clarify because nothing is impossible so I'm told). He did well (he even told the nurses before it started that he wanted his IV out before he woke up...this was a big deal), and thankfully everything structurally looks good. Brain is awesome! She had a good conversation with our ENT and wants Jackson to be evaluated by the Pain Clinic. Within that appointment you see a doctor (they check to make sure as many "medical" reasons for the pain have been addressed), a physical therapist (I am not sure what function this would have for Jackson's pain in his face/sinuses) and a psychologist (because sometimes when our bodies have been fighting infections for so long they overreact to pain). She explained what she was thinking to Jackson and why and he thought it was a good idea. When I got the MRI report a few days later, it did show some issues in his sinuses again so I sent the report to his ENT to have him review it also.
While we were waiting for the ENT to get back to us on his view of Jackson's MRI, almost a month after his November infection he got another one. We ended up going to urgent care and getting antibiotics. The doctor asked what our ENT's plan was for Jackson's sinuses and I know I looked a little blank because right now we don't have one. I was glad we got him started on meds though because though they haven't cleared it all up 100%, they have definitely made a dent. I did get a call back from the ENT the Friday before Christmas and his impression of Jackson's sinuses were that it's not uncommon this time of year to see what was there. Though he did go on to say that in both the CT and his MRI his turbinates were extremely swollen, and this would be something worth addressing. He said he would call in a script for his sinuses, but I told him about our urgent care trip and how he was already on meds now. After talking, we agreed to proceed with planning surgery to help take care of these turbinates (I had NEVER even heard of these) and hopefully help some of the pain/pressure he is feeling.
After Christmas, I called the Immunologist office to try and see where they were with getting the records they needed to make the referral. Good thing I called because they weren't getting the response they thought. Long story short, I did a request and then played phone tag back and forth trying to get his records faxed. I just don't understand why if you have "electronically faxed" something a few different times, and to different numbers why you would continue to fax them each time with the same method. Finally, the papers were faxed manually and they got there. Friday, they were able to fax them to Colorado, so hopefully all of that information is now in their hands being reviewed by their team. I talked with the nurse and hopefully should get a call back Tuesday when she is in. We're pretty sure it's a better idea to wait to do the surgery until after a second opinion, so I really hope that this all comes together and moves fast.
Break has been tough. Jackson hasn't felt well. His sinuses hurt, he's had fevers again every day and he's just plain been tired. More of the same old same old around here. He has asked a lot of times why he doesn't feel good and how are we going to make it go away. The other day I explained about Colorado, and getting another opinion to see if they could help figure it out. I also explained our ENT's plan for surgery. Jackson listened and took it all in, and then clarified that only the ENT would be doing the surgery. I told him yes and he said, "that's ok then. I trust him." We've done a clean out the last two days, and hopefully it's been enough to really get him going again. He was coughing a bunch today, and tonight his chest was hurting so I'm really crossing my fingers that it was nothing. Addie is not feeling great right now either. Hers is more the underlying thing that is definitely not enough right now to warrant a doctor's visit, nor is it enough to keep her in bed. But it's just enough to make her moody and cranky at the drop of a hat.
We have the Pain Clinic at the end of the month and see the geneticist in March. I'm hopeful that at least out of the Pain Clinic appointment will come someone Jackson will be able to work with who can help him understand, cope and deal with not feeling well. I have a hard time believing that his "infections" aren't going to continue. I feel like we've been down this road before and now we are a little wiser. But then I chuckle because right now, we really aren't. Jackson has never made it easy, and Addison definitely adds her own twist. So for now, we continue with the jumbled "Family Circus" way of doing things. Knowing that God has a plan, and ultimately HE is in control.
