Our Christmas angel...

So yep, she had pneumonia again for sure. Her CRP was elevated, she had an infiltrate in her right lung and she was miserable to boot. Needless to say we did not get to do the EGE testing that time; instead we went on home with ‘scrips for steroids, antibiotics, and orders to check back in with Dr. McArthur the next day or sooner if she got worse overnight. We did end up taking her in the next day to see the doctor and as expected there was the “do we admit her or not” issue to be dealt with.

I know I said that I’d just say go ahead and let’s admit but it just isn’t that easy. There is a fine line that I feel I can walk with Alana in regards to when to admit. At that point I felt that if she could just get some fluids in that she’d feel better, ergo, be able to stay home longer. For the time being the doc agreed and what we settled on was doing an IV in the office. It wasn’t going to be a magic fix by any means but it might allow her the strength that she needs to make it through this. While they are getting things ready Dr. Tapple, whom she’s seen many times when Dr. McArthur isn’t around and admitted Alana for her October stint, sees that we are there again. He inquires as to why, is told, asks if she’s going to be admitted again and shakes his head. I think that the Alana frustration is rubbing off on him as well…

Once the line is placed she promptly falls sound asleep and we just wait for the bag to run through her. It’s amazing how much it can hurt to watch her have a line placed even though you know that she desperately needs it there. I’ve seen her have so many placed I couldn’t tell you a number, I can tell you it still hurts me; not as much as it hurts her, but in a very different way. Over time the line seems to be working and she’s sleeping a bit better and has some color to her cheeks. This is all great news at this point as it means that there is hope that we can go home!! It’s right around Christmas time and she really wants to be the angel in the play at school and I really want her to be that angel.

It does end up working out and she is allowed to go home on tight orders. If she gets worse, doesn’t eat or drink in ‘x’ amount of time, or has an even harder time breathing then we have to return, not only return but return with the knowledge that she will be admitted straight away. I can handle that and I do think that she is OK enough to be at home for the moment.

The play rolls around and she’s WONDERFUL! Thank goodness for such an amazing teacher (Mrs. C) who just takes Alana in stride; she knows when to push her, how much to push her, and when to just offer her a hug without any pushing involved! I am so very blessed with some of the people that are in Alana’s life. She does her lines wonderfully and is in great spirits for the duration of the play. Lucky for us it’s not very long and she’s able to make it through without coughing to bad.
We go back the next day for another check-in and there’s been no real change in Alana. We are given the go ahead to head down to Cooper Landing to spend Christmas with everyone again, conditional; she gets no worse, the hospital in Soldotna is within a short driving distance, and nothing new pops up. This is all doable in my book so off we go to grandma’s house.

Christmas was as well as could be expected. She did have problems with eating and drinking like I’d anticipated but not to the point of dehydration. She did lose more weight, a total of 12% of her body when it was all said and done, but she enjoyed Christmas at home, with her family…not in the hospital like the previous year. It took almost 3 and a half weeks for the pneumonia to finally clear up and things never went back to the ‘old’ way again. Her baseline had officially changed, not for the better.

There are things that I don’t remember to mention in here until I am at a point like I am now. These are the little things that no one can put their finger on but are like pink elephants starting to fill up a room. Alana has had new things going on that I’ve been, for lack of a better word, ignoring. I know that sounds ignorant, foolhardy, neglectful, you name it I’ve thought it. I wasn’t ignoring them because I thought that they were not worthy to be followed, I was ignoring them because I was worried that they needed to be followed. Of course this didn’t last long at all. As Goldfinger so put it, “the first time is happenstance, the second time is coincidence, and the third time is enemy action”. None of this was really going un-noticed by me; I just didn’t know what to make of it was the problem. Here’s a partial list of what I was noticing:

Extreme redness on her face
Hot ears
Hot and red hands and soles of her feet
Raw, painful patches on her tongue
Increase work in breathing
Decrease in her SATs even with the increase in work
A lot of rashes
Sleeping 2-3 hours a day
Increase in her heart rate as well as dips in her heart rate that last longer than they should

I didn’t know what to make of those things or even what to do about them so how the heck was I going to take care of them!? I did take heart that I was not the only one noticing them, Dr. McArthur noticed them as well and agreed that this indeed seem like a new baseline even though it was lower than her crappy baseline to begin with!

Things pretty much continue in that same manner for the next few months. Alana sleeps even more than usual, she is coughing more, she’s running fevers tighter together, not gaining back the weight that she lost in October and December, having frequent rashes and tongue issues, etc., etc. Amongst all those concerns I notice that she’s just really struggling to do daily activities that she used to be able to do, swimming for instance. Granted she still had some issues with them but she still was able to pull them off. Now she can’t even do that and it frightens me to see her literally and figuratively, sink. We are now in February of 2009 and there are changes on the horizon that shake up a lot of things.

The summer is here...

The summer ended up being a long one. Alana spent even more time sick and in and out of the doctors’ office as the summer continued. Dr. McArthur tried to make things easy. She ran tests. She asked for consults and then she ran more tests when the first ones didn’t yield what we were looking for. It is now May of 2007 and she has been sick for all most 3 years straight.

The rest of the summer is pretty much the same as the start of the year was. Noelani and Shaylin are trying to be brave and remain little girls. Shaylin seems to have the hardest time with all of this. Noelani seems to cope better and that may be due to the fact that she’s older, more mature and able to talk through her emotions. Alana keeps us from a lot of things. We don’t go camping at all because she can turn at the drop of a hat. She can be smiling, eating, drinking, and coughing all time than WHAM! She is dehydrated, lethargic, and struggling to breathe.

Because we are not getting anywhere when it comes to her coughing we try and focus on the diarrhea. What if we can at least get that under control? Maybe other things might fall into place as well. We meet with the GI doctor again and yes again he tells us that there really isn’t anything that he can think of to do. It was a blessing that her immunologist, the wonderful Dr. Demain wrote another referral stating that she did need the GI doctors’ help.

We meet with Dr. P and he tells us that doing an EGD (esophagogastroduodenoscopy) and colonoscopy might give us answers about the chronic diarrhea. After thinking about it for a few days we decided that while it is another procedure we need to do it if we hope for any answers. Early November we go back to the hospital and have the scopes done. I get to stay with her this time until she is fully under. That was an experience in itself. She was usually sedated when they took her but never fully under. She did great though. It did take her hours to wake up in recovery which seems to be her M.O., but we were overall pleased with how she handled it.

The results came back with some results (say that 5 times fast)! In her duodenum there were eosinophilic cells which are a type of white blood cell that is related to allergic reactions (among other things). Dr. P tells us to go ahead and go back to Dr. Demain and speak with him about the results because they might mean that we are missing some of her allergies (remember from above that she has Eosinophilic Gastroenteritis). It isn’t too long before we have our appointment with Dr. Demain and he has his thinking cap on.

We end up deciding to re-patch test her. I don’t remember and I don’t feel like looking back to see if I explained what that is but here it is again. When you are patch tested for allergies compared to scratch testing (where they place small scratches on your arm or back with the tips of the “needle” dipped in an allergen) they place small metal discs in your back filled with the perceived food threat and a special compound. The discs are left on your back, covered in tape, for 48 hours. No shower and no messing with them. After that time you go back in and the patches are removed. The nurse does a first impression and writes that down. After that you go home and the actual read is done the next day. With it being a “cell based” reaction, not the same as an oral reaction which may it turn cause an anaphylactic reaction, it takes time for the body to react.
She has her whole back filled up with patches including the ones that we all ready know of, beef, chicken, pork. Now I have seen enough of these to know that something wasn’t right with her back the night that they were taken off. In the past she’d never really complained about them once the tape was off. Now she was hysterical and scratching against anything she could find. *sigh*
She comes back positive for beef, chicken, pork, turkey, corn, carrots, rice, oats, and eggs. I started to cry. I just could not help it. I know in the scheme of things it wasn’t terrible. She had gone through so many things and we knew that she was having diarrhea for a reason so this shouldn’t be a huge surprise but it was. I was expecting maybe 1 or 2 new foods but not 6 more. To make things even more stressed out Dr. Demain decides that she also needs to be taken off all diary foods to boot. Sometimes even though things do not come back positive for milk he explains that it’s a tricky one. There is a thing called Heiner syndrome and she does fit it. That was exciting. The cure…NO MILK! It is a relatively unheard of disorder but as you can see here are some of the symptoms.

• Chronic airway disease
• Iron-deficiency anemia
• Recurring diarrhea
• Failure to thrive
• Cough
• Shortness of breath
• Wheezing
• Recurring respiratory infections
• Retarded growth
• Gastrointestinal disorders
• Pulmonary hemosiderosis
• Partial or complete lung collapse

Hello!! How many of those does she have! It was a mix of bittersweet about all the foods but maybe, just maybe there is another answer out there. The test is just to remove every speck of dairy from her diet. We meticulously remove all dairy from her diet. No one would feed her they were so afraid to mess it up! The goal is no milk or other dairy for 6 months and within 1-2 months she should show signs of improvement if it is Heiner syndrome. Fingers and toes crossed right…

As December rolls around with all its festiveness and warmth and Alana is going down for the count. By mid-December there is no use denying it; she is really sick. By the way, if that isn’t enough right now I end up having to have a surprise total abdominal hysterectomy at the start of the month. What the hell right!! So anyway-my hospital stay wasn’t going as smoothly as hoped and I had to spend a few extra days in there. All the while Larry is juggling the girls and work and yea, as mentioned Alana is getting visibly sicker each and every day. I leave the hospital sore but all right and 8 days later Alana enters the hospital again. I’d like to say it wasn’t something usual that she had a bad virus, that everyone in the house was sick with the flu but alas, nothing could go that right. She has atelectasis again and infiltrates. The fevers are just under 104° and we cannot get them under control (I could have cut and pasted that from above right…).

Dr. R comes in and we start discussing what should be done. He is now suggesting that she have a lung biopsy done. What they would need to do is make 3 incisions on her chest. One on the back where the biopsy specimen would pass through, one on her side where an instrument would go, and finally another on her chest, right below her nipple, where another instrument would go. He tells us this is the best way to get a “definitive” diagnosis for her (to confirm his diagnosis of hypersensitivity pneumonitis) and to actually see her lung under the microscope. We are listening and agree to meet with the surgeon. Dr. J comes in and we start talking. He is a gentle man and you can tell that he’s been around the block for awhile. This can be a good thing and a bad thing. Older doctors have the wisdom, experience, and proven track record to get things done. Both Dr. R and Dr. J fall into this category. The downside is that they are set in their ways and sometimes unwilling or incapable of exploring newer possibilities. Luckily, Dr. J was a wonderful combination of both old school wisdom and realization that the parent is running the show.

Dr. J does a complete exam on Alana and feels that she is too ill to do the biopsy. He tells us that she could end up on a ventilator and there is the possibility that she won’t come off of it. Yes, things were so very, very hard right then. I mean think about it. It was a no brainer that we did not want her in a worse state than she is all ready in but that small possibility that we could finally have a diagnosis! That we could without a doubt see what her lungs looked like and what they were “made” of and what if “it” isn’t there when she is well!?! Do we miss the window in which she is acute and is the best chance to see what is causing it or do we just let it go and hope that in time when she’s better but not better we do it then? Nothing is easy with Alana is it?

We are upset, Dr. McArthur is upset, Dr. R is mad that we are considering not doing the biopsy, and Dr. J was probably wondering what the hell we are all doing. I don’t think that I have cried that much in my life as I did that day. Oh and yes, it is the day before Christmas and we are not going anywhere. We spend Christmas in the hospital praying that Alana will make a turn for the better.