The immunologist then came in with a few more questions. She informed us that she wanted to rerun ALL of Kate's immune panels, as well as her vaccine titers and a few new tests (WBC function, etc). She explained that in using an average lab, they pool your results with any one else classified as human; age, gender and race ignored. Looking at Kate's results from our pedi, she felt that Kate had more of an immature immune system, than a deficient one, based off their clinic's numbers. They have actually done the research to break down the numbers for every age, down to the month, in children. Using their lab at the medical center, the risk of error would be less and they would be able to have a baseline to compare future labs taken there with.
She went on to explain that Kate didn't have the number of hospitalizations and some other symptoms to warrant infusions or any big treatment. She was much more concerned that her asthma and reflux were not being controlled. She really believes this is causing a LOT of her problems. We had SO many questions answered and left with an incredible peace knowing what we were looking at. She explained that she didn't expect to get any drastic differences in the new labs and made a game plan according to this. Basically we need to continue what we've been doing and get in to a GI doctor ASAP. She did change her Pulmicort back to Flovent to try and get her off of the twice a day, mandatory breathing treatments. She felt that part of her behavior problems were from not feeling well and partly from being pinned down for 20 minutes, twice a day. As she stated, "You only have so much tolerance for things and when it's gone, it's gone".
She had a respiratory therapist come in to show us the proper way to use a meter-dosed inhaler, spacer and mask. That was almost as informative as the rest of the appointment. I have used inhalers for years and had no idea I wasn't using them efficiently. Apparently the average adult only gets about 25% of the medicine per puff. You can imagine how effective this is with children. I knew that for Kate and myself, the nebulizer is much more effective, but didn't know why. She seems to be doing better with the inhaler with the new spacer and mask we received. She also added Reglan to her regiment to help with the reflux until we get into GI (we have an appointment in early December that we are trying our hardest to get that bumped up). She also asked that we get a clear x-ray of her chest when we thought she was well. She said she didn't want to over look if it could be Cystic Fibrosis, but she felt pretty strongly that it wasn't. She had pulled up all of her x-rays and hadn't found a one that was "clear". I'm not really sure how we are going to manage to get that, but we will try.
Within a few days, the doctor called with the lab results. It was fairly good news. Her IGG had come up from 420 to 520 and her IGG was still at 22. Her vaccine titers looked good and all of the other tests came back within normal ranges. The final word at this point is that her immune system is immature. She should outgrow this by age 4, if she is going to. They want to redraw all of her labs there annually to keep an eye on it.
Since then Kate wound up with a double ear infection, croup and upper respiratory infection. Her ear infection was just shortly after the immunology appointment and so we know it hadn't been there that long. It was pretty bad for being "new". She wound up on steroids, antibiotics and breathing treatments around the clock all because of an ear infection. With that, her pedi felt that she should be evaluated for having tubes put in her ears. She feels that she may be refluxing into her ears, as well as her sinuses, and that could cause problems and infections of its own. It took over two weeks to get over this all and for the wheezing to be gone.
Thursday Leah came home from school with a note that someone in her class had been diagnosed with the flu. Friday she woke up with a stuffy, runny nose. By Saturday she had a cough. It never really got bad, just didn't get better. Last night she was running a temp of 102 so I decided to take her in today, despite the fact she was acting alright. Her only complaints were that her neck hurt and that she was sad that she couldn't go to school or play with the neighbors. At about 12:45 AM, Kate woke up screaming. She was up until 4 o'clock this morning with a snotty nose and cough. She sounds just like Leah does.
This morning, Tuesday, I took Kate to her ENT appointment. I really liked the doctor. She was thorough and very down to earth. She explained that she didn't think that tubes would be a "cure all", but felt that they would help. If we could even eliminate one or two ear infections a year, that is that many less antibiotics, breathing treatments and steroid courses. She felt it would be beneficial to take her adenoids out while she was in there. She felt that this would save an inevitable future surgery. She does not want to take her tonsils unless she gets in there and they are really bad because that IS part of her immune system. She feels that this surgery will be one "piece of the pie" to getting her healthy, as will getting her reflux in control, etc. She said that while the surgery would be doing nothing to fix her lungs, she has had patients that have had much asthma relief from it. We are praying for that!
Since we are about to change insurances, surgery is scheduled for Thursday morning at the medical center. We have tickets for U2 Wednesday night and although we will be dragging Thursday morning, we need to get this done. I asked the ENT about Kate's stuffy nose and whether or not this would effect surgery (as she didn't realize it was already in the books) and she felt like it could go either way. She wanted me to have her check by the pedi when I took Leah in and see what they thought. Ultimately it would be up to anesthesiology.
I took the girls in this afternoon and the doctor decided to do a flu swab. Since swine flu is so common around here right now, they have stopped swabbing and are just giving medicine to people who are severe. Knowing Kate's history, coupled with a pending surgery, they decided it was worth it. The swine flu seems to be milder than what the media thought it was going to be. Leah's swab came back positive, Kate's was negative. The doctor is almost certain Kate is coming down with it too, but its not in her system enough to show on the test yet. Since Leah has had it for several days, is otherwise healthy and isn't really being "harmed" by it, they are letting her ride it out. Since Kate has a history with respiratory issues and getting hit hard by bugs and is scheduled for surgery, they started her on Tamiflu. I thank God that Leah did get it first so that we could test her to "see the future" with Kate. I have a feeling it would have been dismissed if Kate had gotten it first and I had taken her in this earlier in the illness. Surgery or not, catching it this early with Kate's history is an immeasurable benefit.
I called and spoke to the ENT about our findings. She said she wasn't too concerned about it since Kate hadn't even had a fever yet and since she was getting on the Tamiflu so quickly. She felt we would be catching it early enough that she wouldn't be too bad off. It is still up to anesthesia though. They should be assigning the anesthesiologist between 12 and 3 tomorrow and we can call and ask them what they think. Assuming she doesn't spike a high fever or have any worse symptoms, I think we will be a "go". There is always the chance we will get down there and they will not do it. The ENT warned me that swine flu is a "sensitive" subject with the medical center and that they are screening anyone that comes through the doors. She said that we would probably be quarantined and wouldn't be allowed in the waiting rooms. We would be taken directly to our room. Darn! Maybe we can avoid picking anything "new" up while we are there this way.
The surgery should take about 45 minutes and be pretty minor. The doctor made it clear that if her oxygen saturation is down at all after surgery, they would be keeping her overnight for observation. Knowing Kate and the fact hers tends to run low, added with the swine gunk, I'll be packing a bag, just in case. Part of me wants to postpone it, but I really feel we just need to get it done. Leah is out of school this week, so we don't have to worry about being here to pick her up, Daddy-O "coincidentally" was scheduled off for Thursday and Friday and I am not taking care of my nephew at all this week. On so many levels, it seems like the perfect time. We are praying that the anesthesiologist makes the "right" choice for what is best for her. If we don't do it this week, there is no guarantee that she will be well the next time it is scheduled. At least for now, she is having NO wheezing, which is very rare for her. I know that they will not do the surgery if she is wheezing. Waiting for her to get "well" for something, is worse than watching paint dry. I hate to put her body through too much, but am trying to focus on the outcome and am leaving the call in the physician and the Great Physician's hands.
I've had trouble deciding what to do about the U2 concert as well. They are one of Daddy-O's all time favorite bands. Eight years ago, they had a concert in town the same week we were slated to be on our honeymoon. He had a tough time choosing. Four years ago, they came back and he had just been laid off and we didn't have the money to go. I promised we would go this time and we've had the tickets since the minute they went on sale. I REALLY don't want to miss it. Ask me if I'd have voted differently on Friday! It's definitely shaping up to be a busy, crazy, chaotic week!
Despite this all, God's timing continues to be perfect. Our babysitter for tomorrow didn't cancel despite the girls illness, the fact that we caught Kate's SO early and can treat it proactively, having Daddy-O scheduled to be off for two week days (this never happens) especially to have it line up with the surgery day AND we received a refund check from our insurance company at EXACTLY the right time. God is good all the time and ALL the time God is good!!!!
Please join us in praying:
-Leah would continue to get better
-Kate would not get any worse or run any fever
-Kate would get over the cough and runny nose quickly
-Daddy-O and I would stay healthy
-if it's God's will, the surgery will happen on Thursday
-the surgery would go successfully, with little pain and complication
-the surgery would bring Kate some relief
-thanking God for his blessings and timing
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