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Sunday, May 16, 2010

When it Rains, it Pours...

The ER doctor gave me a few days off to stay home and rest, but I ended up spending all of Monday 4/19 at the hospital. I had some appointments with my Allergist and Primary Doctor so they could come up with a better treatment plan for me. I took Boo along to keep me company. He has a blast no matter where I take him.

My lungs suck. I've had my Allergist (I'll call her Dr. S) for close to seven years now and her Medical Assistant is an old friend of mine from junior high "M". While "M" was taking my vitals she told me that Dr. S started the morning by proclaiming, "Oh my gosh, Tiffany almost died this weekend!"

Hello, HIPAA violation!

It's a good thing Dr. S isn't my OBGYN! (Lol, not that my vagina has issues or anything. I keep my pekpek clean thankyouverymuch!) Anyway, I did a spirometry test and it wasn't looking good from what I could see and feel. My lungs still felt very shitty. As soon as Dr. S came in the room she told me that my results were just as bad as they were when my lung collapsed in 2006. Specifically, my FEV1 is less than 50%!


So, Dr. S put me back on all of the medications she had me taking in 2006. Dr. S also insisted that I try a preventative medication called Xolair, but I was on the fence about taking it. I didn't feel well enough to deal with the potential side effects (anaphylaxis, death, blah blah blah) of the injection. In case I changed my mind (which is what she wanted me to do), she had me get some blood work and allergy tests done.

During our appointment, Dr. S sternly reminded me that I "will die" if my asthma doesn't get under better control. I can't make this stuff up, people. Apparently, my anaphylactic reaction was exacerbated even more because my lungs are already so weak. Dr. S thinks a combination of the day's events at the Hemophilia Walk is what landed me in the ER. I was really pushing myself and it caught up to me. (I say it was still worth it!) She stressed to me that I was inches from being intubated (again!) and THAT scared the living daylight out of me. I was in the ICU two times in one week very early into my pregnancy with Niki (she was a fighter even in utero). This was the first "bad episode" I've had since then and Dr. S really made me realize how much I need to take care of myself for the livelihood of my den. If I die the cubs are f-ing screwed.

I'm going stop trying to be Superwoman all the time. ;-)
Boo was able to maintain his good behavior for my entire appointment with Dr. S, but all bets were off once we went to see my Primary Doctor. My wild child was noisily thrashing about on the exam table paper, interrupting the doctor midsentence, and basic showed the doctor that my lion taming skills sucked that day. Our "promise to be good" pep talk rendered moot during that appointment. Once we left that exam room, I was relieved to be done with my day at Kaiser. However, I was not so glad to be on a lovely cocktail of Prednisone 10 day taper, Advair, Flovent, Flonase, Albuterol, Singular, Zyrtec, Omeprazole, and Famitodine.

It's been a month and I STILL hate how my body feels. I'm convinced my that electrolytes are being affected by one of these medications because my muscles feel occasionally tender to touch. Also, I'm constantly feeling fatigued. But if it means I'll live and my asthma will be drastically improved then in all for it. I'll find out what my FEV1 is this Wednesday. :)

Monday 4/19 turned out to be a royal pain in the ass!!! After thinking that our den was finally done with the craziness, Niki's Broviac sprung a leak later that night.
John was administering her factor late because we had a communication breakdown on who was supposed to administer it that day. I slept in that morning so I didn't give her factor because I thought John already did it for me. And he thought that I would do it because I was home sick. Anyway, he was flushing the line with normal saline (the 1st step of factor infusion) when her shirt slowly started to grow a clear pink wet spot. We lifted her shirt and lo and behold she had a hole in her line. Her tubing was starting to look a little stressed in that area, but we never thought that it would actually leak!

The Oakland NICU nurses, Dr. Awesome, and Nurse Richard warned us that it could happen one day, but we never thought it would happen to Niki.

It was 10:00 at night and she had a freaking hole in her line!!!! I think it's pretty safe to say that we panicked. John pulled the line straight so it would temporarily close off the leak. We still needed to administer her factor and get Heparin in the line to prevent clotting. John quickly finished her infusion and then clamped it with one of the thousand emergency clamps that the NICU gave us when Niki was discharged to go home. We then stabilized the clamp by taping against her abdomen.

Meanwhile Niki was totally fine. She's always completely oblivious to the scary stuff.

I contacted the on-call Pedi Hematologist thinking that we would be instructed to go to the ER to get it fixed. My heart dropped when she told me that hardly anyone in Emergency Medicine is properly trained in Broviac repair. In fact, only one doctor in Pedi Hematology can repair Broviacs and that was Dr. Grumpy.

We had no other choice than to wait until morning.

The next morning (Tuesday 4/20) John and I went straight to Dr. Awesome's office hoping for the best. Niki ended up having a high fever (102 degrees) early that morning so it worked out perfectly. No ER trip this time. Thankfully, Dr. Grumpy was able to salvage the Broviac. He snipped off the broken piece and attached a new one on. Then he used a tongue depressor to keep it stable for the next 24 hours while the glue hardened. It's super long now, but we're just glad that she didn't have to get emergency surgery to replace the Broviac completely. It already sucked that her first one needed to be replaced two days after her first Broviac was installed.

I wish I could have taken pictures to show you how it was done, but we were busy holding her down. (It REALLY sucked to do that by the way.) Here's a schematic that I found of how it was repaired.

Niki getting her infusion
Completely oblivious as always.

We thanked Dr. Grumpy profusely after Niki's Broviac was repaired. He was actually very nice and not-so-grumpy during waking hours. After the repair, Dr. Awesome proceeded to address Niki's high fever. She ordered Niki the usual blood culture and 2-day dose of Ceftriaxone in case her Broviac was brewing an infection. The following day I took her to SF Kaiser's Pediatric Infusion Center for her second dose. I caught my first glimpse of her newly repaired line and was impressed that it was still holding up.

Look how long it is!
Watching Barney during her infusion...

She never got an infection and I'm happy to report that her new Broviac is functioning just fine. I was back to work by 4/23. Niki's constantly yanking at her newly elongated line. Needless to say I can't wait until she has her port surgery in August. Her skin is constantly breaking down (and bleeding from scratching) because of Tegaderm we use for her dressing. Hurry up August! It sure was storming around here, but it has finally let up and I can see clearly now the rain is gone.

More blogs to come. :)

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