Going back to that last hospital stay I mentioned that we met Dr. R. He had plans to diagnose her while we were there and had plenty of ideas simplest being that she had aspirated food when she was an infant and it was stuck in her lungs causing the inflammation and always negative lab results. Then he asked if she had been checked for CF and yes, Alana in fact had already been tested 2x via sweat test and then finally genetically as was I. Neither of us are carriers for CF so that effectively removed that from the equation. Anyway-we talked for hours about her past history and we mentioned that we had recently* brought 2 birds. Parakeets named Tweet Tweet and Opal. Wow. That opened his eyes to what was wrong with Alana. She had what is called Hypersensitivity Pneumonitis and it was from the birds. It’s an interstitial lung disease and it’s mostly seen in an on the job based scene i.e. coal miners lung, bird fanciers lung, & most commonly mold in walls. It is a hard disease to diagnosis and even harder to prove in some cases. There are things that are almost always seen with it and then there is a fine tooth comb that needs to be run over every aspect of one’s life. You have to have environmental studies done to make sure that you are not taking an already super sick person back into an environment that will cause them almost immediate distress. There are three overlapping versions of HP (Hypersensitivity Pneumonitis) Chronic, Sub-Acute, & Acute. If Alana indeed has HP she would have the chronic, which is the worst, because of how long her symptoms have been going on at this point. Chronic is low level exposures over days or weeks with acute flairs in between. Finding out what the antigen is a fundamental step in stopping the progression of the disease. Here is a medical definition of HP:
Hypersensitivity pneumonitis (HP) is a group of rare inflammatory interstitial lung diseases that result from repeated inhalation of certain fungal, bacterial, animal protein, or reactive chemical particles, called antigens. The body's immune reaction to these particles causes inflammation of the very small airways in the lungs, called alveoli. If exposure to the antigen is continuous, parts of the lungs may become scarred or fibrous.
Can you see why we would be so scared at the mention that she may have this? Is it something in our house? Is it something in the air that’s seasonal? Is it everywhere? Before we leave the hospital we set up with an environmental company to have our house tested for mold. Mold would be the most common reason a home would make someone sick and she’s lived in this house her whole life. The day she’s set to return home the house is tested and she’s started on steroids. The steroids are to make her lung stronger and if indeed it is a mold issue in the house than they can help protect her while we await the test results. It is going to take 2-3 weeks to get the results from the environmental company so in the mean time we just try and keep her well and return to normal routines.
Finally after what seems like forever the results come back and they are negative. The whole house was tested down to the crawl space and there aren’t enough molds to even slightly raise an eyebrow. During this time as well I have started on another search to learn about HP. The more I read and the more Dr. McAurther and I talk about it the more it doesn’t seem like Alana. Granted there are things about it that do, the fevers, the weight loss, and a few others but the main hang-up for me are two things,
1. She was so young when the coughing and fevers started, under/around 3 months of age, for HP that’s taking a rare thing and making it even rarer.
2. She’s able to have short period’s in-between that she’s OK. We have done 2 antigen panels by now (antigen panels are where they actually take her blood and test IT for HP triggers. They subject it to known and in her case, some newly discovered antigens, and get (-) or (+) results that way) and she’s tested (-) for everything including mold.
The more I learn the more I doubt that she has this. It’s neither the first time nor the last that she fits something but it isn’t her (Hyper IgD, Muckle Wells syndrome, Familial Mediterranean Fever, etc.) so we’ve learned how to be hopeful but skeptical at the same time. Nothing is ever black and white with Alana much to our dismay. On goes the testing and seeing Dr. R a few times. We have a stressed relationship with him at this point because what we were hoping was going to turn into her knight in shining armor with a DX has turned into someone who doesn’t appear to be listening to us and going with what doesn’t seem to fit her. It’s so frustrating. It’s so disappointing. It’s so usual.
We see Dr. R for what would turn out to be our last office appointment with him and he just tells us that she’s more than likely got HP to something that we don’t know about yet. That there are so many things that she could be responding too and medicine doesn’t know everything. Clearly that answer doesn’t work for us. Larry and I are not going to accept that she’s just got something because it’s a convenient DX. We start our search again and hope that she will make it there healthy.
So I think last time I ended up getting distracted. I was talking about her tonsils and Dr. P. Then I got sidetracked with all the other doctors and such. Let’s get back to that. So Dr. P thinks that she will do better (well I think he more or less hopes at this point) if we remove her tonsils that she will sleep better which in turn might help her eat better which in turn might help her get better.
Something that is important to mention at this point is that we have a new pediatrician! Dr. Erin McAurther and she is in the top 10 of the most amazing women in the world. She’s compassionate, brilliant, and just an amazing person to know. She’s taken Alana (and us) under her wings and is working to find out what is wrong with our baby. She’s great with the girls and she never ever makes us feel like we are asking dumb questions or to many questions for that matter.
It’s been a long road and we are desperate to find something that is going to be that magic *poof* that we’ve heard so much about. We agree to do the surgery and also given her history she is going to spend the night in the hospital to monitor her overnight. It’s funny that now days they have things down so ‘pat’ that even 10 years ago that type of surgery would have been a 2 day stay. Now it’s an outpatient deal and they don’t even kiss you on the way out the door. OK-so off track again. She has her tonsils removed in November of 2003. Dr. P is great and we have no doubts that he will take care of her and do his best to make this easy.
I didn’t mention another thing again that ties into this. When she was in the hospital last time one of the thoughts was she may have an infection in her tonsils or somewhere behind them. An abscess somewhere that wasn’t visible to just a tongue depressor. So they did a head CT and what they are looking for isn’t there but they do ask us this…”Are you sure she’s had her adenoids out? Not just tubes put in? You see her adenoids are huge…” We are most certain she’s had her adenoids out and then they explain to us in some cases they can grow back after they’ve been removed. It’s not common but hey, what about Alana is at this point.
So that ties into her latest surgery as Dr. P is going to look again to see if they have indeed grown back. If they have he is going to remove them again so that’s another possible surgery that she’s going to have to ‘feel’ again.
Again Alana proves to be amazing and makes it through the surgery no problem. Dr. P talks with us and no, her adenoids have not grown back. He isn’t quite sure what they saw on the CT and he’ll take a look at it but it wasn’t her adenoids. She is taken upstairs and oh can you hear her from down the hall!! Again we used versed as a sedative before surgery but this time we did it through an IV so maybe that will make her wake up better is what we are told. Yea again that’s not happening.
So she spends the night at the hospital and we go home the next morning and she’s doing fine. She’s isn’t eating anything yet but she is sucking on popsicle's and trying to drink small amounts. At this point that’s all we can ask for.
Life yet again goes on. Alana is sick a lot more than her sisters or anybody in the house for that matter. We still search for a reason and find all sorts of things that sound like her yet are not her. She still isn’t sleeping through the night which was one of my biggest hopes with the tonsillectomy. Sleep. She’s still waking 2-3 times a night sometimes more. Her snoring has improved but she is still coughing and there are days that I have to fight myself to stay awake because of the lack of sleep she’s having.
It’s only a matter of time and she’s getting very sick…again. Bags under her eyes, coughing fits, fevers, losing weight, and yes, all the same things she’s now been doing for years. This is the same path that she has gone down before and here we go again. For months she is perpetually sick. There’s no break and by February 2007 she’s admitted again for “Pneumonia”. This was one of her worst episodes. She was so very feverish that she couldn’t sit up. This is where we first heard that she was having “ocular swelling” because she would be in such pain from light and noise’s a black room and hands over her ears was all we could do to keep her from crying.
During this stay is where we finally, yes finally, after all this time meet the local pediatric pulmonologist. Now where we are there is only one. Yes, only 1, uno, ONE, and oh did I mention, #1. So I am not going to waste a whole lot of time explaining our relationship with Dr. R. There is no point in it because it can be boiled down to just a few words. He’s always right and we are always wrong. There you go that’s all you need to know to understand how this relationship plays out.
Alana in now getting sicker everyday we are in the hospital. It’s been a week and she’s not improving at all. In fact she’s having more fevers and her O2 issues are getting worse. Dr. R tells us that if she gets sick again he will consider doing a bronchoscopy on her to see the food that he’s sure she’s aspirated. It would explain the coughing, the fevers, everything according to him. By that night she’s gotten so sick that he decides that it can’t wait and they prep her for the surgery.
That was by far the worst night in our lives at that point. She was so frail and so sick. What seems like hours past by and we see the doctor talking with one of her nurses. We brace ourselves and he comes in and tells us that he didn’t find anything specific like an inhaled piece of food but that her lungs are “sticky and swollen” with “gunk” in them. Then he tells us that her left upper lobe has collapsed. He says that that’s what more than likely happened when we saw a very prominent increase in her breathing rate and her start to really struggle to breath. If there wasn’t a wall holding me up for the first time in my life I felt what it was like to feel faint. The room spun and I almost collapsed. It was terrifying and so very emotional that it makes me upset thinking about it.
We wait for the tests to come back and she just stays where she’s at. By the start of the 2nd week in the hospital she’s having such a hard time even sitting up because she’s so weak from not eating and being so feverish. Trying to get her up and moving and using her lungs is proving to be a battle that leaves her exhausted from crying, me exhausted from making her get up then holding her while she cried and us both exhausted from the emotional stand point. There are more tests done and we are waiting on her to start and get better. We spend 13 days in the hospital this time. It’s not good and we are quite honestly, pissed off.
