Time seems to fly by rather quickly for the next few months. It’s now February of 2008 and as is now par for the course Alana is rather sick again. In the meantime we’ve been working on getting a sleep study done to see if shes de-sating at night and if that’s what’s causing her to wake up at night at such random intervals. There isn’t a pediatric sleep center here so Dr. Young, who we are now working with, suggests that when we make the trip to Cincinnati we have it done there. That brings me to my next thought is that yes, we are planning a trip to Cincinnati Childrens to meet with a team of doctors. Dr. Young has spent countless hours with me on the phone, emailing us off and on for weeks with pages of questions about Alana. She’s contacted all of Alana’s doctors here and requested records and x-rays, and CTs. Dr. McArthur is just amazed at how involved Dr. Young has become to Alana’s care and how much she’s trying to help. For the first time in a really long time it feels like we may have an end in sight for the diagnostic phase.
By the time that April rolls around tho the news isn’t very good. Alana is so sick that we may have to wait on the trip. At this point we are planning on being in Cincinnati in May to meet with Dr. Young (Pulmonology), Dr. Bleesing (Immunology), Dr. Putnam (GI), Dr. Graham (Rheumatology), and Dr. Boesch (Pulmonology for another bronchoscopy). To have to reschedule all those appointments is going to be very hard. The suggestion is made that we go ahead and do a small sleep study at home using a monitor that will be provided by the local oxygen supplier and it will record her SATs while she’s sleeping. If she’s coughing so bad maybe we can get her on O2 and that will help her heal a bit so we can make the trip down there. We already know that sh'es gong to need O2 on the plane so trying to figure out that is such a pain in the ass.
We do the mini sleep study and wait to hear the results of it from the O2 Company. At the time there was a wonderful gal working there named Aurora and she was very good at keeping us updated with how things were moving along. As I waited for her to print out the results, the whole time with Alana coughing and gagging and looking like hammered crap I couldn’t help but think that there wasn’t going to be anything. It’s par for the course with Alana that her labs don’t match the kid and the kid doesn’t match the labs. What I mean by that is when doctors take a look at her CTs, labs, x-rays, history they picture this very frail and sickly looking child before they’ve even seen her. Then they see her and notice that she’s smiling, small for her age but otherwise the quintessential “She doesn’t look sick” child they start to overlook all those labs and tests that they were so concerned about. Anyway—So Aurora comes out and she looks unhappy. Great, it didn’t show anything was what I was thinking. I was so, so wrong. It showed in a 4 hour period she had de-sats down to 84% more than 20 times. The highest that she got up to was 96% and that wasn’t for very long, her baseline was close to 89% for most of the time she was hooked up to the machine. Aurora had the tech’s make sure there wasn’t a problem with the machine because it was so awful and then they told us that everything was in order and the machine was working properly.
So all in all it turns out there was something we were missing; Alana needed to be on O2 at night even when she wasn’t acute. It’s now only a few weeks away from her appointments in Cincinnati and things are starting to look up. She’s sleeping a bit better with the O2 on and she’s not even fighting putting on the canula (prong looking thing that delivers the O2 up her nose) and tells us that it makes her feel better when she has it on. WHOOO HOOOO something seems to be helping her. Dr. Young is staying in touch and letting us know how things are looking for appointments. She’s set us up with some of her colleagues whom she thinks will be best suited to help Alana. We are scheduled to have a high resolution CT scan (HRCT), many, many labs, sleep study, bronchoscopy, and anything else they deem needed while we are there. We are looking at a solid week there and the hope that finally we are going to have a diagnosis for Alana. Dr. Young has mentioned things like Neuroendocrine Hyperplasia of Infancy (NEHI), Lymphocytic interstitial pneumonia (LIP), Surfactant disorders, and anything else that she can think of that “fits” Alana. It is such a relief to feel like the end might be in sight! That while it sucks the fact that Alana has to deal with having 2 rare diseases, Eosinophilic Gastroenteritis (EGE) and now a probable interstitial lung disease on top of that, there is hope that for some of the lung diseases there are treatment plans that can be put into effect to help her. There is some light at the end of the tunnel and all we have to do is make it across the country, an 8 hour flight, to Cincinnati Childrens hospital to meet the person who’s going to help us and it can't come a moment to soon as things are changing with Alana, she's getting sicker faster then ever before and she's just getting very tired very fast. Here we come Dr. Young, hope you are ready for us.
