September 12th: Life Goes On

Last night Annie went for her CT scan to check for pulmonary embolisms and blood clots in her chest and lungs. It took the vascular access team about an hour to find a vein large enough to tolerate the high rate of contrast that has to be pumped in during the CT scan, but they finally found one and carefully placed the new line under sonogram guidance.

However, when we went to get the scan, Annie cried and fussed as they injected the contrast during the scan. Her IV line had failed, so all the contrast had been painfully injected into the surrounding tissues of her arm, causing it to swell up. Because the contrast didn't get into her vascular system, the CT scan didn't show anything. Discouraged, we returned to our room, and they decided they'll try again in the morning. Annie is literally running out of veins that are in good enough condition to tolerate IV lines. The vascular access team is now in again today, looking for larger veins in her upper arm, thigh, and ankle. Once they get a line in place, we'll immediately have the CT scan and cross our fingers that the contrast doesn't blow out the IV again.

Last night they started Annie on a blood thinner, Lovenox. It is given twice a day by injection into her thigh or abdomen. Right now they suspect she will need to stay on it for 6 months or more. But that plan might change depending on the CT results we get today and if they find any other clots or embolisms.

Annie had a pretty uneventful night. She had a fair amount of discomfort, most likely from her swollen arms. Her temperature was a little more stable last night. But this morning her white blood count has gone up. It might be due to the inflammation from the blood clot and the contrast infiltration, but we're not sure. So we'll continue to watch her blood counts daily.

This has been by far the busiest hospital stay we've ever had. It has been exhausting to have so many blood tests run, radiology tests, and procedures. It seems as if we have a steady stream of nurses, residents, hospitalists, phlebotomists, and several other specialists in our room. To say we are exhausted is an understatement.

Previous hospitalizations have seemed much simpler since Molly and Lexie were younger and didn't have so much going on. But life continues on for them with homework, new band classes, field trips, marching band rehearsals, learning show choir music, deadlines for school fees, football games, weekend parties, playdates, early morning seminary, and many other things. Molly even leaves on a weekend band trip tomorrow. It's so difficult to juggle all the things they have going on and be at the hospital to care for Annie, be available to talk to doctors and get various test results to help plan her care. And while all this is going on, Justin still has classes at the university to be teaching, students to help, and meetings he's responsible for.

Molly and Lexie feel the stress too since we aren't at home much to help with homework, fill out permission slips, or get school fees paid, etc. And when one of us is home, we are exhausted, in need of a shower, and still worrying about Annie, and often on the phone with the other one of us at the hospital. And not only are Molly and Lexie worried about Annie, but they still have all their school work and extracurriculars to worry about, all while missing their parents. We are so grateful that my mom is still here to help with housework, laundry, groceries, and making meals. I definitely don't have any energy or time to take care of those things. But she will soon be going home.

I saw a picture online yesterday that has gone viral. It's a picture of a 4 year old boy with his bald head standing over a toilet feeling sick from chemo while his 5 year old sister stands next to him with her hand on his back. The mother posted that picture to show that these tough medical challenges are not just a trial for the child going through it, but it affects the entire family. I could relate to all the feelings she expressed. Our family is definitely feeling the strain of this hospital stay. We're praying that we can get Annie home, even if she's not better, and continue to care for her with our family all under one roof. She'll still need visits to the hospital and clinics to be monitored, but all being at home would be a huge blessing for our whole family. The results of her scan today will help us know how much longer until that wish might be granted.

As I've been typing this, the vascular access team was able to get a large mid-line IV in Annie's upper arm! So it's time to try the CT scan once again. I'll share results later today.