I tell Robyn that she is a trooper and one of the strongest persons I know, but today and preceding days have really worn her out.
As of today, Robyn is officially on the transplant list and the first candidate for her blood type. Unfortunately, after many different attempts by her doctors, the infection is not improving as they would like. As scary as it sounds, Robyn now knows that transplant is her next treatment option. She will now begin the wait for the perfect match and will not accept anything marginal. The doctors have let her know that she is in good enough health to wait for that perfect donor.
The thing that is so shocking is that this rapid decline in her lungs is not typical of CF. It happens every once in a while, but we never thought it would happen to our otherwise healthy Robyn!
The waiting game now begins. We don't know if it will be hours, days, weeks, or months. But, we remain confident that she is in good hands and are optimistic that she will be up-and-about running with Lola soon....
P.S. Don't worry...Robyn's already inquired if this will interfere with her bikini body and it won't!
Laura
Friday, November 21, 2008
Thursday, November 20, 2008
Update
The last few days have been a bit of an emotional roller coaster. Robyn is now listed on the transplant list but the doctors are still trying everything to get her lungs back to where they were or close to it. This was still quite shocking to hear even though we have accepted that a transplant will most likely happen in the future.
Yesterday she spent 5 hours off the BiPap and today another 6. This means she sustained sitting with the oxygen cannula on at 6 liters and her saturation didn't fall too low. We're hoping tonight they can lower the oxygen on her BiPap as this is her last hurdle to get out of the ICU Step Down unit. The goal is to get her upstairs to the normal pulmonary floor tomorrow morning so we can have a birthday party for her and Lola can come visit.
As always thank you for all the prayers and messages. Robyn has her laptop in her room so she is able to check messages when she feels up to it. More updates to follow.
Yesterday she spent 5 hours off the BiPap and today another 6. This means she sustained sitting with the oxygen cannula on at 6 liters and her saturation didn't fall too low. We're hoping tonight they can lower the oxygen on her BiPap as this is her last hurdle to get out of the ICU Step Down unit. The goal is to get her upstairs to the normal pulmonary floor tomorrow morning so we can have a birthday party for her and Lola can come visit.
As always thank you for all the prayers and messages. Robyn has her laptop in her room so she is able to check messages when she feels up to it. More updates to follow.
Tuesday, November 18, 2008
Bye, Bye BiPap!
Today was a better day for Robyn. After 7 days of being on the BiPap machine for 24-hours a day, she is slowly being weaned to 6 liters of oxygen via cannula. Today she went off the machine for an hour in the early afternoon and 2 hours during the evening. She seems to be tolerating it well and is anxious knowing getting off the machine will get her out of the step-down unit and back to the regular floor. She is hopeful that will happen by this Friday which happens to be her birthday.
Her doctors remain hopeful that the latest antibiotics are working their course and that she is coming around the bend. Transplant evaluation is still in process, but we hope transplant will not be something she needs in the near future. The doctors are trying their best to get her lung function back to where she was when she was first hospitalized.
Robyn is thankful for the messages you are sending and is able to keep up-to-date via her laptop. Please keep the thoughts, prayers, and positive vibes coming!!!
Stay tuned for further updates....
Her doctors remain hopeful that the latest antibiotics are working their course and that she is coming around the bend. Transplant evaluation is still in process, but we hope transplant will not be something she needs in the near future. The doctors are trying their best to get her lung function back to where she was when she was first hospitalized.
Robyn is thankful for the messages you are sending and is able to keep up-to-date via her laptop. Please keep the thoughts, prayers, and positive vibes coming!!!
Stay tuned for further updates....
Monday, November 17, 2008
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.
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.
Monday, September 22, 2008
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!
Tuesday, September 9, 2008
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!
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!
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