We continue getting used to Julie’s needs as we settle into our new schedule. I hope you can appreciate my sarcasm (and understated humor) in this update…
Julie’s four month mark came and went. She continues making progress, but the g-tube is no fun at all.
We’ve had another week of excitement with the g-tube. We saw the surgeon last week. He took a quick look, congratulated himself on a great job and we spent the rest of the appointment just visiting about each other. He really is a fun person and very encouraging to both Sarah and I. He said that we didn’t need to use the tape and gauze routine on Julie anymore, so we took it off that night as part of Julie’s bath and she didn’t seem to mind one bit! We’ll go back at the end of the month to replace the g-tube with a “mickey button.”
But the next day, Sarah noticed that the opening around the g-tube was swollen and red. On closer inspection it really looked like her insides were coming out. Being the strong, faith-based Christians that we are, we calmly, coolly and decisively… FREAKED OUT! We thought that the kid was going to die! For some strange reason, Julie was not offended by any of this. She merely asked politely and maturely that we leave the tube alone. Eventually we complied. Later in the day, we realized what was happening – a rather large amount of goop was coming out along the sides of the tube, Once that cleared, the opening returned to it’s normal appearance and Sarah and I started breathing normally again.
Julie finally made it to church on Sunday for her first time. In keeping with her parents’
tradition, she arrived late and visited with everyone. She even made a few remarks during the Bible lesson. I’ll resist the temptation to compare her interjections with her father’s
unsolicited contributions – judge not…well, you know the rest.
Later that day, Julie was having a really bad afternoon. She screamed with more zest that I’ve ever heard before. She had just started her 3 pm feeding; she had a dry diaper and was in her favorite bouncer; but she sounded like the climax to an opera. To make a long story short, I hooked her g-tube to a large, open syringe to ventilate her stomach. Oh my! She was bursting at the seams! The nissen procedure prevents Julie from burping normally, so this is the only way for her to get rid of extra air, etc. She has done so well since we’ve been home that we hardly ever vent her anymore (we did it at the hospital all the time). Fortunately, the g-tube helped in that case.
Then yesterday, Sarah called me at work with a calm, but worried voice. The g-tube was very, very loose. Julie lost some blood and other goop. It was a mess and she was afraid the tube would come out completely. I drove home with purpose (breaking only a few driving laws). We called the surgeon’s office and were reassured that everything was normal – just another stitch coming loose. It helped that by this time, Julie had stopped screaming and was sound asleep while I held her hand away from the g-tube. Amazing how she quiets down when nobody is picking at the opening! The nurse suggested
using some tape to keep the tube in place which we did gladly. And, Julie has been happy ever since. Her parents are considering substance abuse – chocolate, doughnuts, chips, etc.
We saw the cardiologist today. She gave Julie a clean bill of health. Her heart has completely recovered from the tumor. Julie weighed 13 lbs! Her oxygen reading was 92% (not great, but not bad). We also received permission to stop the diuretic and electrolytes. Overall, the doctor was very happy, so we don’t have to see her for 6 months.
We were a little late for the appointment this morning and had to have breakfast on the go. Julie got a formula latte from Starbuck’s with rice cereal thickener – her favorite!
So, Julie is down to just two inhalers (twice a day) and a multivitamin w/iron (once a day), plus we have a prescription from the doctor to beat her twice a day! That’s very important for the breathing of the child and the sanity of the parents, ha! Actually, Julie loves her CPT “beatings.” She relaxes so much that we moved it to just before we put her down for the night.
I’ve attached some recent photos.
Thanks again for all your prayers and support. Our friend Molly came over yesterday and helped Sarah finish decorating the nursery. Another friend, Holly, helped us get started a couple weeks ago. We also reorganized the furniture in the house and set up the playpen.
Andy & Sarah Horn
Molly came around for another visit to help finish up the nursery.
I had little interest in frills and decorations for the nursery, not because I don’t appreciate beauty, but because I get tasked with most of the work. Those who care about such things will do a better job than me. Fortunately, Molly and some other ladies from our church both care and have the knack. Bless them!
Instead, I use my best features (strong back, weak mind) to move furniture and setup the kids toys.
Only three more weeks left in the summer semester. Although voluminous, I have remained caught up on reading and the video lectures. I have enjoyed the papers and only have a relatively small amount of work to do.