History and a Big Stretch

You know it's been a bit too long since you last blogged when: a) people quit asking you about it b) your web browser no longer auto-fills the website and c) you have no recollection of what you have or haven't blogged about (I don't think I ever did a Christmas post and maybe not even a Halloween post). Needless to say, it's been a while. I had a little talk with myself the other night and decided I either need to jump back on the blogging bandwagon or give it up all together. By no means am I saying that I will catch up or stay current on here, but I would like to give it a try because it makes me sad that I haven't kept "record" of our lives anywhere else and because I think I get a lot out of it. So here goes.

Have you ever gone to stretch and as you reach it feels SO good? You stretch a little further and....ahhhh, sweet relief. Being greedy you go for a little more and the next thing you know, you hurt.....badly. It's almost as if going from such a nice, gradual, good feeling to a bad one makes the pain a little worse.

The past few months have been good. Kate has been, dare I say, "healthy". "Healthy" for Kate still involves a lot of medicines, but it has been leaps and bounds above last year. She has had a few colds and bugs, but done very well with them all. I finally got brave and asked her doctor if he thought she had outgrown whatever was going on. In his opinion, whichever issue she really does have (cilia, asthma, etc.), she would not have gone from 13 rounds of oral steroids in 2009 to healthy in January 2010. Typically if a child does "outgrow" issues, they have less occurrences each year and they are less severe each time. They do not simply go away (without lots of prayer!). He feels like we were "given" a little break and are in the calm before the storm. As he put, "Historically, Kate likes to be, um....different. She'll probably wait until spring or summer when everyone else is great to show off again". Unfortunately, it's all too true.

We've taken advantage of this break and made 2 trips to San Antonio. The first was just the four of us and the second was with a bunch of my family. I will try to post pictures and stories from those soon. We also went to the rodeo and have had a few play dates and other outings. It's been nice to "test the waters". Since she has been doing so well, I spoke to our pediatrician about having another bronchoscopy and brushing done to recheck her cilia. It can take up to 2 months for them to regrow, so once we hit that point, I wanted it scheduled soon to get it out of the way before she got sick again. Our pedi called the pulmonologist who (after taking 2 weeks to get a hold of) said he "didn't want to do it since she is doing well now". Thoughtful fellow didn't want my sweet baby having to go through the anesthesia. Isn't that sweet?

Problem is:
1) We still have no answers.
2) Kate has to be well for 8+ weeks to get an accurate reading and she hasn't had one healthy stretch for that period of time (other than now) since she was born. Being that the pedi feels this healthy period is temporary, I have an incredible sense of urgency building up to get this done now.
3) She is scheduled for 2 tests requiring sedation to see what damage has been caused by the medicines she has been on. These will be tests will be done annually (with sedation) so long as she is on all these meds for the unknown problem. Not saving her much, huh?
4) This isn't all some big plan that I made. This was HIS plan and I'm not sure why he's changing everything now that we got to this point (which I NEVER thought we would even get too).

To me it seems pretty easy. Scope her, brush her and prove that she either a) has no cilia ever or b) has cilia that were damaged as a result of really bad viruses back to back, as well as asthma. If I knew it was b) I would LOVE to start putting her in Bible class and maybe get her in a class or program a few hours a week this next fall. However if she has no cilia, I would be a lot more cautious (and not waste my money) on these things. It would also give us some idea on what to plan for with the future. Although she may have issues regardless of the outcome, we would know a bit more about the severity. We could also apply to research groups who would be up to speed on treatment plans and information. I really feel like this doctor just doesn't know and is not really concerned.

I've tried, unsuccessfully, for over 2 weeks to get the pulmonologist to call me back. I've left many messages and talked to his nurse, who assures me that the note is on his desk. I realize that he is busy, but in my opinion, this is unacceptable. When our primary doctor can't get a hold of him for 2 weeks and neither can I, it makes it very difficult to have a "working" relationship. I am just about done with him. I have a call in today, requesting an appointment for Monday (the ONE day of the week he sees patients) so that I can go deal with this all in person. At the very least, he needs to sign off on her case so someone else (who cares) can pick it up. The pedi is also contacting the ENT who did Kate's ear tubes to see if she can do the brushing and scope.

As we've waited, trying to get this all sorted out, all has been fairly quiet on the health front. Or at least until last week. Last week, days before Easter, Kate woke up from nap running a temperature of 103.5. Sound familiar? They ran blood work, tested for strep and both flus and tried to get a urine specimen, unsuccessfully. The result? The Cadbury virus, allergic to Peeps, Bunny-itis, call it what you want. She had a bad virus. No other symptoms presented and the fever was gone a few days later. The timing was EXACTLY the same as last years virus. I joked with the doc that I would mark it on the calendar for three days before Easter next year and he laughed that two years in a row is funny, but if it happened a third, he would send us to a doctor for "um.... well.... really weird things".

Monday morning Leah woke up with pink eye and a sinus infection. By noon, it was obvious Kate had a sinus infection too, so we loaded up and headed back to the doctor. Leah had tonsillitis, sinus infection and pink eye (worst case I've ever seen) and Kate had ear infections and a sinus infection. Apparently Leah's tonsils were pretty big and this is the second time they have been huge in just a few months. We need to check them in a few weeks when she is well to see if they are still large. She's started snoring a lot a few months ago and they may need to be removed. Kate's ear infection is the first she's had since she had the tubes put in. Apparently the ear drum was very inflamed and irritated around the tube. The tube in her right ear was sitting cockeyed where the doc couldn't see through it. We aren't sure if it is trying to fall out or is just backed up with stuff. It wasn't draining though. We will have to check that out once she is well.

Tuesday Leah woke up with lots of gunk sealing her eyes shut. Even after a hot shower and removing all of the gunk, her eyes were SO swollen she couldn't open one of them. It was the size of a golf ball. By Tuesday night the swelling went down some. Kate's ear did finally drain a little too. By Wednesday night, Kate started the infamous "asthma cough". She coughed quite a bit during the night. So it was back to the doc today. Our doc is out of town so we've seen two different ones in the office and like them both. Sadly, for the first time in 12 weeks, we are back on oral steroids, once again. We are going to try a low dose for just 3 days and see what happens. If I can get a hold of the pulmonologist, I am still going to push for the brushing sooner than later since there should be at least SOME cilia there if she is capable of growing any. She isn't wheezing horribly, if at all, but her ear still looks bad, her nose is still really gunky and her cough sounds like it could be the start of trouble. Hopefully this will give us the upper hand.

On a positive note, the MRI on Kate's arm (for the lesion on her arm found on an xray last year was scheduled for June 1st, the first available appointment. We had a nightmare trying to get this scheduled (apparently they have to do general anesthesia and have a special anesthesiologist there because of the heart defect) and I was just happy to have a date set. They called and moved it up to next week. WOO HOO! It will be nice to get that off of our plates. That makes me even more certain we need to nip this cough in the bud this week.

We have been SO thankful for the hiatus. I've attempted to develop a new mind set during this break and while I am extremely frustrated with the pulmonologist and am terrified we are headed down the same path we were on last year, I am trying to learn to let go and let God. What better way to travel!