A friend of mine has a tradition of a year in review blog. It seemed like a great way to take account of your life once a year, looking forward to things to come.. So, I’ve decided to adopt the tradition myself. Here goes.
January 2010. After several weeks of elevated temps and no appetite, finally requested blood cultures for Patrick. Found that he had a line infection from a rare bacteria called bacillis cereus. Treated the infection with antibiotics then returned home.
A week later, with Brian out of town on business, Patrick came down with RSV. Amazingly, he only spent 1 night in the hospital for this, though he had several visits to Primary Children’s respiratory clinic.
Published my first Short Gut Newsletter.
February 2010
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Attended Paul Cardall’s “Celebration of Life” concert on Valentine’s day, his first performance after receiving his heart transplant and had a good, uplifting cry. Took notes, as he’d promised to perform at a concert we were planning ourselves in the spring.
Bacillis returned. We actually only found it because we’d decided to have follow-up cultures drawn. The line needed to be pulled this time and I threw a little tantrum to get the line pulled and a temporary line put in all in the same day. I don’t think surgery often has parents refuse to sign consent. Changed oral antibiotics, started a long course of IV antibiotics. Returned home with what we thought was a fool-proof treatment plan.
March 2010. All the antibiotics made Patrick grow yeast. Patrick was horribly sick and I was scared to death! But amazingly, with the line out, they were able to kill it. Patrick had to spend a miserable few days with IV’s in hands and feet, so we got Child Life on board, which made it tolerable. In checking for yeast, the radiologist – who never talked to me about Patrick’s history – “discovered” Patrick’s existing partial bowel obstruction. Some very green residents got very scared and tried to take drastic measures. Finally, we talked to Patrick’s surgeon, confirmed that it was the same problem we already knew about and decided not to take any action. After a few days wasted treating an old problem like a new one, we got to go home.
The same surgeon miraculously got a double lumen broviac line into Patrick’s tiny veins and we were able to start using ethanol locks to keep infections out of the line.
April 2010. Really got serious about planning Patrick’s Hope Concert. Pushed the date back to the end of March to allow more time to plan. Found a venue. Bought insurance. Started going door to door to local businesses looking for donations for the concert and the silent auction.
Donations started pouring in from all over and we were overwhelmed.
Took Patrick for a checkup in Seattle.. all by myself for the very first time. This was also the first checkup we went to without an admission in Seattle. Got a flat tire on the way home and returned to a house with the water shut off due to plumbing problems. However, we were at home.. for a whole month.. The first in so many that we didn’t mind.
Signed up an occupational therapist. That makes 5 therapists and 10 visits a month.
May 2010. Patrick’s yeast grew back, again! He got so sick that his platelets dropped. This was another scary admission with low blood counts, transfusion, fluid overload bad enough to require oxygen, an accidental extubation in surgery, and a post-op fever.
We were there long enough to do the first of 3 TV news interviews while in the hospital and the 2nd on our way home, the day of Patrick’s discharge. Patrick was famous. Donations and offers of help came pouring in.
Patrick’s Hope Concert was a huge success! Attendance was lower than we’d hoped. Turned out that when we changed days, we picked a really bad one.. but still, hundreds of people came and the event raised enough money to have been worth the effort. Our families and friends came together in amazing ways to put together a spectacular evening. Every auction item sold. Brian got to work with the sound crew and performers backstage. Patrick got to go through a whole day without a nap and stay up well past his bedtime. We were deeply touched, extremely entertained, and thoroughly exhausted.
June 2010. In June, we rested.
July 2010. Took Patrick on his first vacation, despite 3 line breaks in 3 days, including one in the middle of Idaho. I did a line repair myself because none of the ER staff knew how. Patrick did pretty well with his first road trip.
We flew to Seattle for another checkup, this time taking Brian so we could have even more vacation fun. We celebrated the one-year anniversary of Patrick’s cardiac arrest by wowing his transplant team with an almost overweight and overwhelmingly healthy child. Then we had pizza at a park on the beach with friends, then took a walk in the sand which made Patrick so happy he cheered out loud.
August 2010. Patrick got a cold and pinkeye and an ear infection. Blood cultures said he also had a very serious line infection. We aren’t sure we believe it. The short hospital stay resulted in a clotted line we ended up trying to unclot on the night of Brian’s 30th birthday. This line eventually had to be pulled, and a new one was placed in outpatient surgery.
Got a zoo pass that I was very grateful for.
Published my 2nd newsletter. Moved the support group onto Facebook and all of a sudden had a lot of new friends.
September 2010. Got Patrick a brace to help with muscle tone issues in his foot. He finally started trying to walk. Got the go-ahead to start trying feeding therapy.
October 2010. Had a follow-up visit with Patrick’s rehabilitation doctor who confirmed that Patrick has abnormal muscle tone on his right side, probably a manifestation of some small brain damage done by his cardiac arrest, but said that we were doing all the right things. Changed speech therapists to one who could also do feeding therapy. She seemed tough, but better at diagnosing causes for Patrick’s speech delays.
Also saw an allergist and confirmed that Patrick has a lot of food allergies.
Patrick learned to walk by his 2nd birthday.
We wondered how we had such a healthy child at age 2. Everyone told us he’d be on death’s door if not gone by then.
November 2010. Patrick started walking everywhere. I turned 31. Quit feeding therapy because Patrick started to have uncontrolled bacterial overgrowth and adding new foods was only making things worse. Kept the same speech therapist, as we actually started to make some real progress.
December 2010. After months of uncertainty, it became clear that impending changes at Brian’s work were really going to happen. Although the job was stable, certain aspects were unclear or destined to change in ways that would mean big changes in Patrick’s medical care. Decided he’d take a job offer in a sister company to keep our current benefits package and more stability. Had to keep this secret for most of the month. He’ll start transitioning into this new job in January.
Patrick’s stomach upset only got worse. Tried a bunch of different antibiotics. His eyes started to look a bit yellow. Labs confirm problems with his liver, so we stopped giving lipids in the hopes things will turn around. My instinct says the two problems are related.
Still, had a very sentimental holiday season with a healthier-than-he-should-ever-be little boy. Enjoyed every minute of the magic of Patrick’s 3rd Christmas.
By January 1, 2012: I will know why Patrick’s gut has been so sick lately, and hopefully have found a solution. I will have enjoyed my time my little boy and with my husband – wasting much less of it with anxiety. I will have stopped saying “someday I’ll exercise again.” I’ll have found some way to be active. I will enjoy my callings not only while I am doing them, but while I am planning to do them as well. I will stop trying to control everything. I will ask for help and trust my helpers more. I will continue to entrust my future to my Heavenly Father.
2010 was an eventful year. We were blessed to spend so much of it at home, doing the things that healthy families do. 2011 will almost certainly bring big things. Change is almost inevitable in our house. I hope to be up to the challenge.
Patrick Hoopes 