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Saturday, April 3, 2010

Round 7 and Catching Up

This was our world for four days. Well it's been awhile and we have a few very good excuses. Three weeks ago, on a Monday, Addison came down with a cold. That Friday we went down to Children's for her normal chemo appointment. Dr. Kelly saw her and said if she kept not eating, she couldn't breath through her nose so she pretty much stopped eating, or her cough got worse, which at the time was very minimal, we were to call the Hot unit. Before we drove home they gave her an IV to help her along and swabbed her nose to make sure her "cold" wasn't RSV. That night, back at home, sure enough the little bugger didn't eat again. The next morning the same thing so I called into the hot unit and they told me to take her to the ER to get some more IV fluids. We had a wonderful nurse there who treated her great and after a couple of hours we were back at home. They also set up for a home health care nurse to come to the house Sat and Sun to set up an IV we were to hook her up to each night for the two days.

Since her cold started I had been keeping a vaporizer and humidifier on in her room while she slept. We were also suctioning out her nose with this awesome automatic nose sucker one of our chemo nurses turned us onto. All week she had been coughing so hard she would gag and then puke but starting Friday night it really started to ramp up. At one point she coughed for two hours straight and of course ended with puking. The poor little thing's eyes would roll back in her head she was so wore out from all the coughing and just couldn't stop. I took her into a steamy bathroom so many times on Sunday that I was afraid I would run the hot water heat out. The steam helped after about 20min. All weekend I kept calling the hot unit giving them her symptoms and asking if there was anything else I could do. It was very frustrating. I kept asking for help and no one would give me any assistance. It just didn't seem like an average cold to my Mommy instincts. Finally, on Sunday night at 10pm I decided to take her into the ER. They immediately brought in the Dr. which I knew wasn't a good sign. They put her on oxygen, her levels were super low, they said her lips were starting to turn blue and she was really struggling to breath, suctioned her lungs for the first time and took some labs. They ran another chest e-ray which showed she had drastically worsened just overnight. On Saturday her chest x-ray had been clear and now she had pneumonia. Thankfully our ER Dr. was smart enough to counsel with Children's Hospital to see what they wanted to do. I was given the option to have her admitted to the hospital in Green Bay or Children's. There wasn't an option in mymind and I said she was going to Children's. So at 2am the ambulance arrived from Milwaukee and we made
Getting better. At first all she did was sleep.

our way down to Children's. Ryan was underway in Duluth, MN so I drove behind the ambulance. The EMT's said they weren't going to go all lights and sirens but let me tell ya, I was going 80mph and couldn't keep up with them. Maybe they didn't use all the bells and whistles but they sure didn't go the speed limit either. By the time I arrived at the hospital they had already unloaded her and the Dr's had done their evaluation.

This little Monkey got very, very good at watching her toons. They had a ton of kid channels and Addison soaked them up. She especially liked the Baby Einstein movies they had.

Addison stayed a total of four days and it wasn't a fun experience for any of us. Every day, multiple times, they shoved a thin catheter down her nose and into her lungs where they suctioned out mucus. RSV is known for it's plethora of mucus that's sticky and stringy. She also ended up on multiple saline breathing treatments to help break everything up in her lungs. After four day and way too many suctions they discharged
Yeah, the oxygen came off! Nurse Sue came up with these ingenious little pads to put on her cheeks. That way as they were pulling the oxygen on and off trying to get her to breath on her own the tape wouldn't irritate her face.

her. The next day we were in the ER because her PICC line wouldn't flush. They put an anti-clotting agent in her line and let it set for an hour. They then pushed everything through and voila the line cleared. At one point I was very scared that we were going to end up back a Children's having her line pulled and replaced. But luckily Heavenly Father knew I couldn't handle anymore situations for the week. During a total of seven days we were either in the ER, had a home health care nurse at the house, or where in the hospital. Yikes, thank goodness that week is over!

On a good note, as you can see Bettie shrank significantly while we were in the hospital. I joke that it must have just been full of snot and they sucked it all out. All that is left is a lump under her chin and behind her ear. Most people now just think she has chubby cheeks.
Things always get better when our Dad comes home.

The whole week was super stressful but going through it made me very grateful for many things.

I am grateful for such a wonderful captain on Ryan's boat, they let him off every Friday when they are in port so he can go with us to Milwaukee for Chemo and they don't even charge him leave. They also let him come home not only when I was having gallbladder attacks and subsequent surgery but this time also when Addison was hospitalized.

I am grateful for medical professionals who have dedicated their lives to learning and not only treat Addison but care for her as well.
This is Addison's day nurse Sue. She was wonderful and cared for Addison so compassionately, even during procedures which weren't happy to endure.

I am grateful to live in Sturgeon Bay and to be so near a hospital that specializes in hemangiomas (one of the residents said to us that you want to be either in Milwaukee at Children's or San Francisco if you need treatment for a hemangioma as these are the premier treatment centers in the states. Oh, I also overheard that Children's is #3 in the world for Children's hospitals!)

I am grateful for so many friends and family who are thinking and praying for a great outcome for Addison. Your thoughts, prayers, and acts of kindness have touched us deeply and do not go unnoticed. We often reflect and are amazed at the outpouring of love we have received over the last few months.

I am grateful for one tough little girl who amazingly smiles through every situation she is faced with, good and bad. And loves us unconditionally every day.

And I am very, very grateful for a loving Heavenly Father who knows exactly what we can handle and what we need. And for a Savior who while atoning for our sins also felt the agony of our every pain and sorrow. What a blessing and comfort it is to me to know that he, and him alone, is the ONLY person who knows EXACTLY what we are feeling.

So while this weeks was one hell of a week it has made me realize this chemo thing really isn't that bad. And average life, after this is all over, is going to be a piece of cake.


  1. You are seriously AMAZING! What a week...you guys have been through the ringer! She is such a doll. She is SO kicking Bettie's tush, Ilove it! RSV is no fun with a sweet baby, isn't it crazy that they can still smile when they feel like crap? You have a great perspective on things, thanks for the update.

  2. Oh my goodness. What a hard week. I can't imagine what that must have been like. That little baby has gone through more in her little time on earth as I have in a lifetime. I continue to pray for her and you guys. Continue to stay strong for her. PS- She looks amazing considering all that she's been through. I can hardly see Bettie! Yay!

  3. Oh, Brooke. I don't know how you do it. I can't believe the trials you're going through. My heart goes out to you. I wish I could be there to help somehow. I can't believe how cute Addison is...even when she's so sick. What a sweetheart. In spite of the trials, I can't help but feel God's love when I hear these stories. Wisconsin seemed so random when you first found out you would be sent there. But now you know why. Heavenly Father knew what you would need to help Addison. Amazing. Our family continues to pray for you all. Love you guys.