13 days and nights...

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.