Tuesday, November 6, 2007

Playing catch-up!

Let's see, its been a while since I've written anything on here. My apologies. We've been busy! Friday we went to Sarah's house to hang out with Charlie Mae. She's getting so big! She already roles on to her tummy from her back, a feat that Maryam still hasn't been able to accomplish! And she smiles at EVERYONE! Seriously, super cute! I have a few pictures of them laying on their play mats, Charlie Mae all turned around and Maryam putting Charlie Mae's feet in her mouth. Go figure, her cousin's feet, but no food! She's killing me!
Charlie Mae sucking on her fingers, Maryam sucking on her nasal cannula...what the heck man?I guess I missed the shot of Charlie's foot in Maryam's mouth, so this is all you get.
In this photo and the one below, this is the closest Maryam gets to sitting on her own. She's getting way better though! We're super proud of her!!!
In medical news, Maryam had her second half of her flu shot on Monday and her second dose of Synages for prevention of RSV. She was really good. Of course she cried when the needle went in, but she stopped as soon as I picked her up. Good baby! After her torture, we went by one of my old offices of Mission FCU and introduced her to some of my friends. That was so much fun! It was GREAT seeing you all again.
Today we found out that one of Maryam's medications that she needs is no longer going to be covered by Kaiser. But I know I've said it before and I'll say it a million more times, I'm sure....I LOVE KAISER! I called Kaiser's Membership Services to find out why Rite Aid was trying to charge me nearly $300 for one of her meds, when they told me that the drug I was trying to have filled was off of their Formulary. In normal people terms, that means that its a non-covered drug. So, I had to do some research. Turns out that Xopenex, the drug of conversation, is an alternative to albuterol. Albuterol makes Maryam's heart race, or tacocardiac, and that is why she was given the Xopenex in the first place. So, I went to the doc's office today to find out if there was an alternative to Xopenex that we could have her switched to. Only to find out her doc went into labor on Friday and will now be out for a while!!! But the covering physician told our WONDERFUL nurse, Miss Maria RN that there isn't an alternative to Xopenex except for albuterol. So, I told Miss Maria that I'd call one of Maryam's neonatologists to find out what they suggest. Dr. Howard Schneider, only one of the best docs I've ever met, told me to call the covering physician for Maryam's pediatrician and schedule an apt. where we can give Maryam an albuterol treatment in a controlled environment and see how she reacts. Dr. Schneider said the reason they stopped the albuterol in the NICU was because Maryam had so many other things going on, why have her heart rate increased if it didn't need to be. Well, less than a half hour after I got off the phone with the NICU wonderful Miss Maria called to see what Maryam's neo said. Upon hearing Dr. Schneider's suggestion, Maria scheduled an apt. for tomorrow morning at 11:30 to try the albuterol. Seriously, Kaiser is on top of it!!! They must hire only the best, because we have had the best experiences!!!

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Emily said...

Long time silent reader. So glad you guys are going to get to try the albuterol in a controlled environment to see if it works. One of my kids used Xopenex the other Albuterol. I didn't learn for over a year that they're the same med only xopenex is without preservatives and much more expensive. Haha.

Anonymous said...

Actually, from someone who works in a Respiratory Therapy department in a hospital, that's not entirely true. Xopenex and Albuterol do not have preservatives. If they did, they wouldn't be FDA approved. Secondly, xopenex is one of those so called "better isomer" drugs where they take out one of the isomers. The claim is that this gets rid of tachycardia, tremors and high heart rate. This isn't true. If you compare equa-molar doses of both products, they have the same side effects. So to give you a little help/guidance, you need to ask for a lower dosage of Albuterol so that you can get the lower side effects and not have to pay for Xopenex out of pocket. Ask your doctor (either in the hospital or in the office) for the GENERIC 1.25mg albuterol (Generic Accuneb). I work in a children's hospital and we get this for the kids all the time, especially in the NICU and PICU. This albuterol is actually indicated for ages 2-12, whereas xopenex is only indicated for 6 and up (0.63 and 0.31 doses ONLY). Hopefully this helps you with making sure your child gets a safe and effective medicine. Do NOT let them give you full strength adult albuterol (0.083% 2.5mg)

Anonymous said...

Hi, Sounds like you got some good advice on the comments. Hope the alternative works for our little one. As for Maryam not rolling over, maybe with the insertion in her stomach it bothers her. She will probably walk before she crawls. Don't worry once she catches up she will be a real pistol. I love the pictures of the cousins. How lucky they are to have each other and by the way you look good too! All is well here, see you at the wedding. Love, Marietta