Good News!!!

So, it appears that we may be able to "dodge" surgery after all! Hooray! The surgeon we saw today was really nice and very understanding. Maryam LOVED him. She took to him in a way I haven't seen in 6 months or more. She wanted to shake his hand, she touched his knees, she let him play with her abdomen and her button. She completely trusted him. I should have had him try feeding her! ;)
He said that the button is close to the rib, and yes its uncomfortable and may even be hitting a nerve that runs along the rib bone. But he also said that since its mostly positional that we may be able to make adjustments that will help, leaving surgery as a last option. He ordered an upper GI dye test to make sure that the fundo hasn't popped or there aren't any leaks in her tummy anywhere. He wants us to put extra padding in her bed, since she likes sleeping on her tummy and try binding the button down with gauze or bandages so it can't move. He wants us to keep a pain diary. Note what foods she swallows because new foods may be upsetting her tummy. He wants us to note when she's guarding more, like just after getting off of furniture or waking up. He wants us to note when she wakes up in pain and how long it takes her to get back to sleep. Then, after we've done all that, he wants to see her again in 3 weeks. He'll go over the results of the dye test and we'll go over the diary and changes we've made. At that point we'll decide together if we still want to go ahead with the surgery.
Once he described what the surgery would involve both Brett and I started asking a million questions about alternatives. The surgery is way more invasive than either of us thought, and neither of us can figure out why we thought this time around would be so different. He said that her hospital stay would be a minimum of 3 days and probably closer to a week. He said he'd try doing it laproscopic but with the amount of scar tissue that is inside, he would probably have to open her up again. And he said he'd have to work through all of the scar tissue, probably have to detach the liver from the stomach which typically grows together by scar tissue after the fundoplication, then stretch the stomach, create the new hole then sew up the last one. He said he'd only be moving the button about a half of an inch. When I heard all of that I got really bummed. I don't know why I thought it would be less invasive, probably because this time around there wouldn't be a fundoplication? I don't know.
But anyway, we're hopeful that the new plan will help. We want to do everything in our power to avoid our daughter's fourth surgery. Thank you everyone for sending out "good juju", happy thoughts and prayers! We definitely draw off of it all.

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.

News

Daddy and Maryam...all bundled up to go outside.

Maryam eating her breakfast....note the the tray is empty of any and all Cheetos!! Hooray! She ate 12 at Breakfast today!

So, now for the news that I've been dreading writing about. You probably read the blog entry on Wednesday about having to take Maryam to see her GI doc. He wanted to examine her to help us figure out why her Mic-Key button was causing her so much pain. As soon as he touched it he figured out what the problem was and it turns out the only solution is another surgery. Apparently the way her torso grew it caused her Mic-Key button track to hit a rib on the inside of her stomach cavity. He said its very painful and compared it to being "constantly kicked in the shin". He also said that this is "bad news". He said he's seen this before and the only solution is to make a new hole and track lower in the stomach.
This is awful. This surgery is going to set her back so much....months if not years. She's come so far with her oral aversion and sensory issues, having another surgery is the last thing she needs. As he said it all I could think of was every worst case scenario out there.....riding the vent, staph infections, physiological damage, and taking HUGE steps backward in her oral progress. He is right, its definitely BAD NEWS.
I didn't want to bum anyone out by writing it on the blog before Christmas. Its all so emotionally draining. How much does Maryam have to go through? How much do Brett and I have to go through as parents? I know it can be worse, trust me, no one knows that as much as we do, but that doesn't make any of this any easier. Just try to keep her in your prayers. Thanks. And I'm REALLY sorry if I bummed anyone out. I'm having a hard time staying positive right now.