Thursday, January 8, 2009

Medical Update......(Insert sigh here)

Monday we took Maryam to San Diego for her monthly Synagis shot. She has to have the shot every 28 days to help prevent her from contracting RSV. We got her bundled up and started walking into the building. As soon as the doors closed behind us she started crying. It was so sad. Apparently she remembers the building now! Last month she started crying as soon as she saw the RN, now it just takes walking into the building. She lost another pound. We have to stop her from losing more weight. If she loses 10% of her weight or more she'll be considered Failure to Thrive again.
Tuesday we had to take Maryam to Riverside for two appointments. The first was with Audiology for a hearing exam at 2:00. The point was to check to see if all those ear infections have caused any hearing loss. We got in around 2:15 and Maryam was not happy. There were two tests that they had to do where they stuck something in Maryam's ears and she cried the whole time. She's so leery of doctors and nurses these days that as soon as she sees them she starts crying. After that torture session, she and I went into the sound booth to test Maryam's hearing. A series of sounds were put into the box and Maryam responded by looking in the direction that the noise came from. She was rewarded by seeing a cute stuffed up animal playing an instrument.
After that appointment we had an appointment with an Ears Nose Throat Doctor. This appointment was supposed to be at 3:15. We didn't get in to see him until around 4:20. The worst part was that Maryam didn't have a nap. She was exhausted and practically begging to go to sleep. I tried distracting her with flash cards, books and music, but she could only deal for so long before starting to get worked up. I took her on walks around the building and had her look out the windows. But when we'd come back to the waiting room, she'd get all worked up again.
When we finally did get in to see the doctor Maryam was anxious as soon as she saw his lab coat, she has severe "white coat syndrome". She gets anxious and nervous and scared....I'm convinced she thinks everyone in nurse scrubs or lab coats is going to hurt her. The ENT was really nice and had a very calming way with Maryam. He explained everything he was going to do and told her that it would hurt or cause any "booboos or owies". He learned our language really fast. She let him examine her with no problems.
He explained that Maryam has some minor hearing loss and that it could be due to her ear infections. He couldn't tell us which ear because she's too young for that test. He told us that he could put tubes in her ears and that they may help, that in fact they help 90% of all children who get them. He said that there are a few exceptions and that she may be one of them. Some of the exceptions are children with severe allergies due to changes in the weather that cause a constant runny nose. And premature children who's ear canals didn't mature properly. He gave us the option of waiting 6 weeks to see if she gets anymore ear infections. He explained that with her respiratory history that he would perform the procedure at a different hospital. He would want to do it at a hospital with a pediatric Intensive Care Unit that could support a child on a ventilator "just in case". He said that normally the procedure is about 10 minutes, 5 minutes on each ear and the child is ready to go home about an hour after its finished. He also explained that there is an anesthesia mask and no IV. But then he continued to say that in her case, the anesthesiologist will probably start an IV "just in case" and have an intubation tray ready "just in case". So, what's supposed to be a "simple 10 minute procedure" is quickly turning into a nightmare! Of course we decided to wait 6 weeks to see if Maryam gets anymore ear infections, DUH!
Wednesday we had a less than stellar feeding session at OT. Maryam's therapist just got back from maternity leave, so Maryam had to warm up to her again. And there was a miscommunication over appointment times and days, so nothing went as planned. It was great seeing Dawn again though, Maryam and I both really like her.
When we got home from OT I sent off an email to Maryam's GI doctor explaining that she's still in pain. (He wanted me to call him in 2 weeks if she was still experiencing pain, I emailed him instead.) I told him that the pain still comes and goes and appears to be positional. I got a call back later explaining that the pain just isn't going to go away without surgery. He put in a referral to a pediatric surgeon explaining that the button needs to be re-placed because of the pain level. The nurse called me back and told me that the surgeon is on vacation until next Thursday. Sweet. So, in the mean time, I have to figure out how to stop the pain. This morning she was so guarded that I had to take her out of the high chair to connect her tube because she wouldn't pull her arm off. She was protecting herself! How sad is that?
When we do finally go to the surgical consult, I'm going to ask if they can do the tubes at the same time. At least that way it takes all the "just in cases" out of the equation.
And to top it all off, Maryam started coughing again yesterday. Its weird though, she only coughs when she's sleeping. I'm wondering if I should take her in to see what's going on. I would just hate to make her go to another doctor appointment this week.
I apologize for taking so very long to update the blog, I just haven't' felt up to it. I do have some happy news to share, but Maryam just woke up from her nap. I'll try to update again tonight.
Please keep her in your prayers, not that I have to ask, I know you all do already. Thank you.


Anonymous said...

Big hugs to you all! You are have a lot on your plate, but you can do it! You are super mama! Praying for you all!

The Shultzs said...

I feel terrible for both of you. I pray everything works out with her surgery and the tubes.
Big Hugs,