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.