Here We Are

I will blog again someday...
This will not just be a medical blog someday...
This will include precious pictures and funny stories of my darling children again someday...

But for now, here we are...

Tonight I've got two out of two kids on medicine for strep throat. I've got a bag partially packed for the hospital for Leah's surgery Friday. I've got a little sweetheart (6 months old) that I've been babysitting since I quit teaching in December, who has the worst case of chicken pox I (and the pediatrician and the nurses at the hospital) have ever seen. We've had multiple doctor's appointments, medicines, phone calls to warn those we've exposed to both illnesses and sick days spent in our pajamas this week. I'm tired and the "fun" hasn't started yet.

Leah had her second sleep study in November and we knew pretty quickly that she would need to be on a CPAP. Before they started the sleep study they let her try on the mask and feel the air pressure for about 10 minutes. When I saw them put the mask on her, I assumed she would freak out. Leah doesn't even like the feel of embroidered shirts and this mask is something else. Much to my surprise, she settled in on my lap and watched tv for 10 minutes totally peaceful. When they took it off, she made the comment that the mask "made her feel good". I thought that was really weird at the time and stored it in my "mention to the doctor later" file. By morning it was very apparent she slept better with the CPAP and she even asked to take the machine home. I was shocked and saddened by the fact that she had been sleeping that lousy.

The MD doctor called us and went over the results, which, once again, included that she needed to have her tonsils and adenoids removed. Since she had this done in January, he was concerned that there was something else causing an obstruction. He referred us to a pulmonoligist who specializes in pediatric sleep apnea. We contacted Kate's pulmo, since we have history with her and love her, and she also recommended we see Dr. K. The appointment was set for this week.

In December, I took Leah in for an eye check up since she failed her vision test at school. She has never complained of headaches, blurred vision or trouble seeing and we've never noticed any squinting. She has yet to get below a 95 on her report card and is an excellent reader so we had every reason to believe her vision was fine. Wrong again! She has an astigmatism in both eyes and 20/40 in one eye and 20/70 in the other. She is the proud owner of pink glasses. She hasn't complained about them once and wears them, without us asking, from the time she wakes up until she goes to bed. Apparently she knows she needs them. Again, I felt bad.

This Sunday Leah came down with strep throat, after her best friend had it last week. We called the pulmonoligist we had a 2:00 appointment with on Monday to see if they would prescribe her an antibiotic while we were there and they said it would be no problem. We got to the appointment and the doctor spent 4 minutes reading us the report summary from the last sleep study word for word. In that 4 minutes I learned that she has moderate Obstructive Sleep Apnea and needs a BiPAP machine that is set at 12/6 and that it would be delivered later this week. That was it. I drug the doctor through my questions and got a little extra information. Here are some of the things I learned from my questions, reading the sleep study and google.

- A CPAP machine gives constant pressure when you inhale while sleeping. Inhaling takes more work than exhaling. This is the most common treatment for Obstructive Sleep Apnea, OSA.

- A BiPAP machine gives you constant pressure when you inhale and exhale. Exhaling is usually tolerated well while sleeping. In Leah's case, she is not inhaling or exhaling fully, causing a disruption in her sleep, on average, every 6 minutes through the night. That is why she needs a BiPAP versus the CPAP.

- Leah has OSA, most likely because of having poor muscle tone in her chest, diaphragm and lungs. She also gets into patterns between the OSA episodes where she breathes way too shallowly. This is also because of muscle weakness.

I mentioned Leah's comment about liking the mask while being awake and the doctor didn't have a good answer. I pushed for doing a lung function study on her and the doctor finally agreed to do some basic studies on her. Those results came back showing that her lungs are not functioning well when she is awake either. When I expressed concern over this finding the doctor said she would check it at future visits to see if we could tell if she is getting sick or not. I understand that concept for peak flow meter users, but I don't think it has anything to do with Leah's case.

She also decided she didn't want to give Leah antibiotics, leaving us in a pinch to get her on meds quickly. On top of that, as I was pumping gas and reading the sleep study report, I found a page diagnosing Leah with obesity and a fatty liver, in addition to OSA. I was REALLY shocked at that until I noticed another patients name, date of birth and medical record numbers at the bottom. I still need to call them and make sure they didn't accidentally put those diagnoses on her chart. All in all I was unimpressed with this specialist. The positive is her BiPAP is arriving tomorrow and I received a copy of the lung function study and sleep study that I can take to her MD specialist. It is one more piece of the puzzle for him to see what is being effected.

On Friday, Leah goes in for a deep muscle biopsy. Three of the DNA labs they ran 4 months ago came back with abnormal results. This could be incidental or could be key to her diagnosis. In the muscle biopsy the surgeon goes into her thigh, almost to the bone and retrieves a small piece of muscle to send to the lab. In the lab, they can break down each fiber of the muscle and see where there is growth, damage and abnormalities. Apparently they start on a basic level and then spend several months staining and researching any abnormalities they find in each layer. We probably won't get results for several months, but at least it's getting done. From what I understand, this is the test that is most likely to provide answers towards a diagnosis and prognosis. As we've learned before, there are no guarantees, but we are hoping for some more pieces of the puzzle to be revealed.

We thought the procedure was a quick outpatient procedure, but it's a little more involved. We will be there for at least 24 hours. After the surgery the surgeon has to stitch up each layer from the inside out, resulting in 6 or 7 layers of stitches internally. Since there is a big chance of tearing and bleeding, Leah will not be allowed to go to recess or PE, play outside or take part in dance or any of her therapies for at least 3 weeks. After 3 weeks we return to hopefully get an "all clear". Leah is a little nervous about the procedure and is not looking forward to the recovery, but she is doing a great job of talking about it which is great.

As always, your prayers are much appreciated!