Wednesday, April 27, 2011

PICC is Gone!

Good news! My FEV1 was 113% and I the PICC is gone! I met with the physician's assistant at my CF doctor's office and I asked a ton of questions.

The PA took my questions to the doctor. He said that, if I want to be aggressive, I can go back on a bi-monthly nebulized antibiotic. My understanding is that aggressive treatment leads to better health, so I agreed, (even though I don't really want to do another another neb!). Luckily, instead of going back on Colistin, they want to put me on Cayston. I say "luckily" because the Cayston only takes three minutes, three times a day, is portable, and the timing is flexible - I just have to do it at least four hours apart, so I could do it one day at 8:00am, then at 5:00pm, and then at 9:00pm, and then the next day do it at 8:00am, noon, and 5:00 pm, etc.

I also asked about the possibility of doing tune-ups in the future. As much as I hated being on IVs, I must admit that they made me feel awesome. My cough and post-nasal drip are totally gone. The PA agreed that it may be worth going back on IVs once a year even though my PFTs are fine. So, despite all the complaining I did during these past two weeks, this is something I am definitely interested in. I want to see how long my cough stays away. If it's a significant period of time, I think it's worth two weeks of suckiness. Not only because the cough is annoying, but also because I can't imagine that there's not some sort of lung damage going on when I have that cough, despite steady PFTs.

Of course, this morning I woke up with a sinus headache :P I made an appointment with my ENT for tomorrow because you would think two weeks of IV antibiotics would take care of my sinuses!

Tuesday, April 26, 2011

Trying the Crib for Naps (Again)

Well, here we go again. I've tried to get Lily to nap in the crib twice, and both times it was a big FAIL. She has been napping in the swing for most of her life (or the car seat if she falls asleep in the car). The first time we tried to get her to nap in the crib was at four months. We tried cry-it-out and she would cry for a while, fall asleep for 20 minutes, and then wake up again and cry until I got her, (and I let her cry up to an hour and a half to try to see if she would fall back to sleep). The same thing happened when I tried at 6 months, and I tried for ten days that time! It was awful because she was soooo tired and fussy from napping so poorly.

It's been almost five months now, and I have been procrastinating on trying again. After all, she sleeps well in her crib at night, so I'm not worried that she is going to need a swing for the rest of her life. But, two things have happened that make me think it's time to try again: Her swing broke, and she learned how to roll from back to belly. I've been getting her to nap by putting her in the broken swing and giving it a big push, which has made it swing enough for her to fall asleep. But, today that didn't work and I watched her in the monitor as she was wiggling all over the place, trying to roll over in the swing! So, now she's been in her crib crying for 15 minutes. I hate this!

Monday, April 25, 2011

Almost Done

I am supposed to get this PICC line out tomorrow, and I am so glad! I have an appointment with at CF doctor's office, and they are supposed to take it out if everything looks good. I will be shocked if it doesn't, considering I feel great. I actually feel better than I normally do when I am not sick. I typically get a cough from mid-morning until lunch time, but that has been 100% absent this week. I am curious to see what happens once I stop the IV antibiotics.

This past month has been so exhausting, I have that I-want-to-throw-myself-off-a-cliff tiredness that I had when Lillian was a newborn. One more day. One more day. I think I am going to sprint into my bed right after Lillian falls asleep tomorrow night.

Thursday, April 21, 2011

I Must Be Crazy

For some reason I thought it was a good idea to administer the Ceftaz in the middle of the night instead of at something reasonable like 10:00 PM and 6:00 AM. Greg and I both agreed 3:00 AM made sense "because it's easier to go back to sleep in the middle of the night." (That's a quote from Greg.) Plus, then my daytime dose would be at 11:00 AM, which would make it a lot easier to get out of the house and do stuff, instead of having to worry about running home to take my med out of the fridge.

Right. Greg has been awesome and getting up at 2:00 to take the Ceftaz out of the fridge so that I don't have to wake up at 2:00 and 3:00. And he can go right back to sleep. The problem is, I need to be "on" in order to administer the med, so, once I have been awake and concentrating for 15 minutes, I have a hard time falling back to sleep. Added to that the facts that I was up coughing half the night for two weeks before starting IVs, I can't go to bed before 10:00 because I have to pump, and Lily wakes up at 6:00 every morning, (and sometimes earlier), I am absolutely exhausted! And this morning I could not fall back to sleep after my alarm went off at 3:00. I think I am going to start shifting my schedule for the last few days of this medication, because I feel like I have a newborn without the screaming baby.

Oh, and CF clinic called earlier this week and wants me to be on IVs for two weeks. I almost started crying. They said it was because I was having such a hard time kicking this thing and orals didn't work. I was confused because I thought the reason oral didn't work was because they were treating me for Staph when I had PA. Anyway, the IVs have worked great and I am staying on them for two weeks. I've felt back to 100% for several days now, so hopefully the extra days on the meds are doing some hard-core ass kicking.

I will admit that I did find it ironic that they also told me they wanted me to do a 14-day course "because you are tired from taking care of a baby." Actually, I am tired from taking these medications!

Saturday, April 16, 2011

Day Five on IVs

Being on home IVs is not too bad. I administer Tobra once a day and Ceftaz three times a day. The Ceftaz only takes about 10 to 15 minutes from the time I start washing my hands until I am throwing everything in the trash. I do it at 3am, 11am, and 7pm, so the worst is having to wake up in the middle of the night. For the 11am dose, I put The Muppet Show on TV to distract Lily. And then I don't have to mess with my IV for the rest of the time I am home alone with her.

Things are pretty busy once Greg gets home from work. The Tobra takes over an hour to infuse, so I start that when he gets home at 5:30. I do albuterol and hypertonic saline at the same time, and Greg throws together an easy dinner while he watches Lily. And then we all eat. (while the Tobra is still being infused). Then I make some ginger tea because the Tobra makes me feel like upchucking. After that, I administer the 7pm dose of Ceftaz. And then I vest for 20 minutes. Shortly after that, it's time for Lily's bath, so Greg does that while I rinse my sinuses and clean the kitchen. Then I comb her hair and brush her teeth, and Greg reads her a book and puts her to bed. She cries at bedtime now, which sucks, but it's better than risking her getting a high dose of Tobra through my milk. At 9:30, I pump for 20 minutes and then go to bed. I will say that this would not have been manageable if Greg had not canceled his work trip!

Oh, and perhaps most important of all, I am feeling better. I'm not 100%, yet, but I have more energy and I am coughing a lot less.

Wednesday, April 13, 2011

Great News (Tobra and Breastfeeding)

On Monday night, Greg asked me why I can't nurse Lillian while I'm on IV tobra. I told him I wasn't sure and went to Dr. Google. Everything I found online said that it Tobra was a pregnancy category D medication, but that it was safe for breastfeeding. Dr. Google said that, because Tobra is poorly absorbed when taken orally (and hence the reason it's not available orally), it is not a breastfeeding risk.

I know not to trust what I find on the internet, but it made me want a second opinion. So, yesterday morning I spent about three hours on the phone.

I called Lily's pediatrician's office, and the nurse seemed confused as to why my CF doctor said I couldn't nurse. She said that it was fine to nurse while on Tobra. I called my lactation consultant. She looked up the drug in Dr. Hale's book and read that it was safe for nursing. She then referred me to Dr. Hale's Infant Risk Center. The Infant Risk Center has a hotline you can call to find out about the safety of a drug while pregnant or breastfeeding. The Infant Risk Center told me the following (I was typing while the woman spoke):

Tobra is considered a lactation risk L3, (on a scale of L1 to L5, which L1 being the safest and L5 meaning do not nurse while on this mediation). They said that levels in milk are low but could cause changes in a baby's gut flora. They quoted a study where a woman was given 150 mg three times a day. Tobra was not detectable in any milk samples, and no side effects were noted in infant. In another study, a woman was given 80 mg every 8 hours and the Tobra was detected in her milk at very low levels. They also explained that 2.6% of what I get ends up in my milk and that Tobra has a 2-3 hr half life. Based on this, they suggested waiting 3 hours until I nurse so that half of the Tobra would be out of my system.

Both studies and one additional one are listed on this site:, which the pharmacist at the home infusion company printed out for me.

After getting all of this information, I called my brother (an MD) and sister-in-law (a pedi NP). My sister-in-law suggested that I pump and dump about three hours after administering the Tobra, just to be extra safe. This is based on what they recommended to nursing women who were taking illicit drugs (apparently not all drugs are re-absorbed back into the bloodstream the way alcohol is, so the levels in my breastmilk may not be the same as the levels in my blood).

I also passed the information on to my CF doctor. He confirmed that his recommendation was based on the pregnancy category. He said he was okay with me nursing as long as I had done my research, but wanted to make sure that I knew that the affect of doing so is unknown (as it is the case for most drugs!).

Based on all of this, here is the plan: Because I only have to administer Tobra once a day, I will do it at 5:30pm and won't nurse Lily before bed. I will pump and dump at 9:30, (I rented a hospital-grade pump because I haven't been responding well to my Medela Freestyle). And that will give us at least 12 hours (4-6 half-lives) between administering the Tobra and nursing.

This is what we did last night and it went surprisingly well. The last time I nursed her was 4:00. After that, we tried to give her formula, but she rejected it. Instead, we gave her an early dinner at 5:30 and a snack at 7:30. Greg put her to bed at 8:00 and she cried for a few minutes and went to sleep! During the night she only woke up a couple of times and cried for a few minutes, but that was it. MUCH easier than I thought it would be!

I am so relieved and so happy that we can continue nursing!

Tuesday, April 12, 2011

Well, This Just Sucks

My culture came back and my suspisions were correct - I have pseudomonas aeruginosa (again). I haven't cultured it in three years, so that combined with the fact that it was present in a small amount has my doctor hopeful that we can eradicate it. I felt silly admitting this, but I was wondering if I might have it again because my phlegm had this weird sweet taste, which I've heard is typical for PA (from other CFers).

My doctor wants to be really aggressive. The last time I cultured PA for the first time was in 2002. I was seeing a different doctor and he put me on three months inhaled TOBI and oral Cipro. That didn't work, and I was on an inhaled antibiotic every other month until I got pregnant with Lillian. (Although I stopped culturing it in 2008. I'm not sure why I stopped culturing it, though.) So, my doctor wants to put my on IV Tobramycin and another antibiotic (that I didn't catch the name of). And he says I can't nurse while I'm on Tobramycin.

I am really upset about this. Lily doesn't take a bottle but will drink water out of a straw sippy, so we are going to give her formula in the sippy (I don't have a freezer stash because I stopped pumping when she wouldn't take a bottle). And I am going to rent a hospital grade pump so I can pump and dump. I am so afraid she is going to cry and think I am rejecting her! It breaks my heart. And I am also afraid that, after 10+ days off the breast, she will not take it anymore. I am not ready for her to wean! I love our snuggles so much.

I've had a huge lump in my throat ever since I got the news about the Tobramycin. This month can suck a big one. Not only have I been sick and my husband has been traveling a ton, I had to put my cat down, and now I'm morning the potential end of nursing :(

Monday, April 11, 2011

I'm Feeling Better, But....

The doctor still wants to put me on an IV :( Yesterday the gunkiness in my lungs subsided significantly, but last night I coughed so hard that now my upper-left back hurts when I breath or move. So, the doctor wants to do the IV just to make sure we knock this thing out. I am supposed to get the PICC line tomorrow. I am very curious to find out what I am culturing.

Friday, April 8, 2011

Ugh, I May Need an IV

Today I called my CF doctor because I wanted to know when I should expect this nasty cough to go away. Because it was Friday, he wanted me to come in just to make sure things were okay. Annnnddd...they weren't. My PFTs were down 20% and he said I sounded like I had bronchitis. He agreed that I looked fine, (and, honestly, I feel fine except for this cough), but he was concerned because I had already taken two oral antibiotics, and he was worried about me permanently losing lung function.

So, he talked to me about two options: Giving the Augmentin a bit more time and adding Cipro, or going on an IV antibiotic. This is the first time I've been this sick since I've become his patient, so he wasn't quite sure which option to chose. He said that, if I were one of his "normal" CFers, it would definitely be an IV. But, because I'm so healthy and even non-CFers can get nasty lingering coughs after a bought with a bad virus, he wasn't as certain. I pressed him some more and he told me he would rather be aggressive, so I agreed to the IV.

The plan is to administer an IV antibiotic at home for 10 days. Based on my previous sputum cultures, he will treat me for Staph, which means an antibiotic every six hours. However, I was able to provide a sputum sample at the appointment, so that may change when the culture results come in next week.

I am feeling extremely nervous and overwhelmed by all this. Just the thought of losing lung function scares me. The idea of having to get up in the middle of the night when I am already really tired sounds like a drag. And Lily has been teething, which means really fussy and clingy. It's going to be hard to manage the treatments and take care of her, but I do have a plan - vest during naps and after she goes to bed. And, luckily, I'm still allowed to move around when the IV is being administered, so she'll just have to entertain herself for a few minutes whiles I get it set up. And, if I get really desperate, I can turn on Sesame Street.

HOWEVER, because I didn't see the doctor until Friday afternoon, he said they wouldn't be able to place the PICC line until Monday. So, I was sent home with a prescription for oral Cipro and an order to use my vest four times a day. My doctor said, if I get better over the weekend, I probably won't need the IV. So, I have everything crossed that this will happen!

I am hanging my hope on the fact that, way back in college, when I used to get sick like this, I got better without IVs and didn't lose lung function. I have only needed IVs once in my life, and that was 22 years ago! I just can't remember how long it took me to get better on oral antibiotics - it's been 10 years since I've been sick like this! I seem to remember being sick for about a month (when I used to get bronchitis). I definitely remember that I was sick long enough that I was fairly out of shape by the time I was able to run again (I remember telling my field hockey coach, "I ran an 11 minute mile today" and her not being impressed :P ).

So, I could use lots and lots of :::GetHealthyFastVibes:::

Wednesday, April 6, 2011

More Augmentin

Lily seems to be feeling a lot better now - this sickness was just a little cold for her. For me, however, I definitely got some sort of CF-infection. I still felt pretty crappy after finishing the prednisone and Z-pak. Yesterday I felt like I was drowning in mucus, between coughing up junk and not being able to breath out of my nose. So, my CF doctor called in a 14-day course of Augmentin and Flonase. He also told me to call my ENT if my sinuses do not feel better in a few days. I am so over being sick - this winter has been rough!

Sunday, April 3, 2011

I Spoke Too Soon :(

Now Lily is definitely sick. She started going downhill yesterday and woke up this morning with a runny nose and cough. So we are following her doctor's instructions: Xylitol nasal drops, Advil, Muxinex, and Xopenex. I really hope she doesn't get even close to as ill as I have been!

Friday, April 1, 2011

Sick Again!

It's just me this time, thankfully. I started feeling crappy last Wednesday and figured it was allergies. But, by Thursday night, I felt terrible - I kept waking up shivering and, when I took my temperature in the morning, it was 101.7. My CF nurse sent me to the RediClinic at the local grocery store to get a flu test. The test came back negative, but, because my symptoms all pointed towards the flu, the test results were only 80% accurate, and I had just rinsed my sinuses, the nurse practitioner at the clinic put me on Tamiflu.

I got my flu shot, but apparently there is a strain going around that the flu shot doesn't prevent. "Great, now Lily's going to get it," was all I could think. Despite the Tamiflu, I have kept getting worse until I had asthma-like wheezing that was keeping me up all night, so, on Tuesday I called my CF nurse to tell her I still had the fever and had respiratory symptoms. So, my CF doctor prescribed five days of prednisone and a Z-pak. I am on day three of these meds and am happy to say that the fever was gone yesterday. I still can't really breath out of my nose and am having a lot of wheezing, though. And I am coughing up green junk.

Thankfully, my mom just happened to be in town for 10 days and she was able to help while I spent most of my time laying on the couch! It was hard, though, because Lily is going through separation anxiety and kept looking at me and fussing. I felt really bad and kept getting up and playing with her on the floor. My mom was especially awesome because, each morning, she would take Lily after she nursed so I could sleep a few more hours.

Needless to say, we hadn't been out of the house in over a week. And, whatever I had, I must had given to Lily because yesterday she got a low fever of 99.9. I freaked and rushed her to the pediatrician because I was scared that she would get even more sick than I was. The doctor said that her only symptom was a red throat, and he said there was no way she had the flu. Today she seemed almost 100%.

So, whatever I have, it's not the flu and my guess is it caused a CF-lung infection because it barely affected Lily and no one else caught it. Hopefully I will be sleeping better soon because this wheezing thing blows. I've been doing albuterol every four hours and sometimes I'm dying for it by the time hour four comes around.

Oh, and in the midst of all this, my poor cat got really sick and I had to put him to sleep. He was my buddy for 13 years and I feel sick over it. I may write more about this later.

In fun news, Lily is advancing a bunch these days. She's getting closer to crawling, pulling to stand more often, and moving around more on her feet. Yesterday she was standing at her activity table with me sitting behind her, (as we always do so she doesn't fall on her noggin'), and she used my arm to turn herself around 180 degrees and gave me a hug. Awwww. Last week she started clapping, today she discovered how much fun it is to splash in the tub, and she is obsessed with reaching at things she finds interesting (her current fav is the 8x10 picture of herself ;). She's a little chatter box, too, which is fun. And she loves to swing outside - so much that, if you make a move toward the front door and then turn away, she will cry because she wants to go outside.

The downside of all this developmental stuff is that she has been sleeping less. She won't sleep past 5:45, and we're lucky to get two one hour naps out of her. Today it was two 40 minute naps. I'm ready to go back to the days of waking at 6:30 and 1.5 hour naps!
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