Health Update

Hello, I’m Robyn’s mom and I am blogging for her while she is in the hospital. I thought this would be a good way to keep friends/family updated on Robyn’s condition so we don’t miss anyone.

Robyn was admitted about October 18th for an exacerbation resulting from an ordinary cold. She was discharged a few days later after having a PICC line started. She was home on IV and oxygen for just a few days when she noticed her heart racing. She went to a local hospital ER and was diagnosed with supraventricular tachycardia (SVT). The ER gave her a drug called Adenosine which basically stopped/started her heart in a normal rhythm.

Although she left the hospital feeling better she continued to feel worse, more short of breath, fevers, etc. Finally, a week later she went to her CF Clinic for her follow-up and was readmitted. The docs put her on a Bipap (http://www.wisegeek.com/what-is-bipap.htm)at night and a little during the day. Things continued to progress and they found she has a huge plug in her right upper lobe and air trapping in her left so she is now on Bipap most of the day and night (she initially did not like it but has adapted). Because she needed more oxygen than what the parameters on the regular floor would allow and because of the problem with SVT, they moved her to a step-down unit last week. She has been on Ceftazadine and Tobramycin and they finally added Zosyn (which she had been allergic to many years ago).

On Friday, they started a derivative of penicillin when they discovered that she had thousands of anaerobes growing in her lungs (they had done a different type of sputum culture to check it out).

Her doctor wants her to stay on bipap for a while to help her lungs recover (she is also on 8L O2) and finally has her O2 sat around 96%...with the bipap. We are hoping she will be discharged in the next week or so.

She is finally starting to get better but it’s been a long haul. In the interim, her doctor felt it was best to start the evaluation procedure for a double lung transplant. This was quite a shock to all of us and terrified Robyn. We are still trying to digest all of this. But at least now that Robyn is improving, we have hope that it will be in the distant future.

One of the hardest parts of this for Robyn is she hasn’t seen Lola in over two weeks but is able to talk to her everyday. Lola misses her but is getting along great with family and friends that are arriving every few days to help out with either Lola or staying with Robyn. Lola’s loving spending time with her grandparents, aunts and friends and this makes Robyn much more comfortable knowing she’s staying active and getting spoiled!

We have had a lot of prayers from family and friends…and ask that you keep her in your prayers and thoughts. Will update soon when I have more news.

Cleaning the nebulizers

Can you guess which batch I took out of the boiling water and which one my husband did?

Hint, hint--remember my husband is a Marine!

Fighting a cold...and winning!!

I had my first clinic appointment with my new cf doctor since I moved back here to NC. I saw him for three years when we were stationed here before so it wasn't really that "new"--just an update. Everything went well. My oxygen sat is back up to normal, where it was before my last exacerbation in June. My FEV1 is taking a little longer than I would like, it is still quite low. I'm a little worried I won't get it back up, I'm always afraid to lose any lung function. I'm feeling quite well so I need to stop worrying about the numbers.


In the evening after we returned home from my appointment my throat started hurting and I could feel drainage down the back of my throat...oh no, another cold! I started taking Elderberry syrup and extra vitamin C and the next morning I felt much better. I continued to fight the cold symptoms all weekend and then last night Lola came down with it. So, I've been wearing a mask on and off, pumping myself with vitamins and Elderberry and hoping I won't develop any other symptoms. I hate these little virus' that decide to attack my lungs, if they could just find the cure for the common cold my cf would be much easier to handle lately! Or of course better yet, a cure for CF would be even better!

What a good sport...

Sully puts up with a lot!

Lola likes to cover him with blankets, bounce on his back, dress him up.

He's such a tolerant dog. They are best friends.

Check out what he looks like with Lola's boas on!

Lola's Funnies

Just had to share a few funny things Lola has said the last few days....

First we were walking into a restaurant tonight and Lola said, "mommy, daddy says they have fresh puppies here" and then my husband, Aaron, said actually she just told me they have "snuggle puppies" here...she was talking about Hush Puppies!

Last week we were out and Lola told me she was cold and then asked "what are these bumps on my arm", I told her they were goose bumps. A little bit later I said it is cold in here, and Lola preceded to tell me "mommy you have mommy bumps!" Our nickname for her is Goose...get it? She's so cute!

We love the beach!!

It is so great to be back near the beach. We took a quick trip out to see the water, no time for "a day at the beach" yet, too busy getting the house in order.

Lola loves the sand but is still a little hesitant with the ocean, who wouldn't be at her age! We'll have to work on that. Have a fun Sunday!

No hitting...

I have to share this quick story, a few days ago my daughter decided to hit me for no apparent reason? I proceeded to say "we do not hit" and put her in a time-out. Lola started to cry, which she does a lot when she's put in a time-out. Finally I asked her why she was crying, "I was just doing your percussion" she said. Nice try! Smart little cookie! How do you punish her after she's just told you she was helping with your treatment. HA! So, she received a long heart to heart about how hitting and percussion are not the same thing. Quick thinking on her part because I know the hitting was not about percussion. Kids are so funny!