His Last Days, as an only child

As is my wont, I'm posting pix 3 months old. Besides lazy, my other excuses include: paranoid that my medically fragile child meets a most unfortunate turn in the road, ditto newborn, ditto older home. Two out of three since these photos were taken have occurred (see the janky line issues, and the not-mentioned hole in the ceiling incident).

These are from the weekend preceding Bo's big #3 birthday, the one the docs in Ann Arbor insisted we would never see, at least not without transplant and huge medical complications. They were wrong again. Each passing day is a testament to their utter wrongness, on so many levels. I'm not mad, I'm not hatin', I'm just sayin'.

Don't get me wrong, I love our house; it is built with old water-tight wood, plaster, brick and apparently the thickest cast iron tub our plumber has ever seen, but why our plumber knows about the thickness of said tub is part of the story. There was a patch in the ceiling of the living room, under the tub. During my maternity leave I noticed the paint bubbling at that site. My MIL matter of factly stated that it was a moisture issue, so required plumbing before plastering. In fact, the previous owner had smashed/discovered a hole in the ceiling, and instead of fixing a slow drip, shoved half a dozen towels up into the ceiling and patched it up. Still leaking. The tub was leaking down the back into the ceiling, and out the front with a noisy dripdripdrip. When we replaced those fixtures due to the drip, I guess the new fixtures leaked even more (thus reinforcing my notion that older homes are better, as it took nearly 80 years for those original fixtures to give up, and less than 3 for my new ones to do so; I digress). So, bubbling paint. So the plumber smashed a hole, fixed the new fixture, replaced the old tub drain, and removed the moldy towels. The handyman ("Joe the Builder, to you, if you are a toddler) patched up the hole better than when we bought the house. And Jose will paint it this week. If I ever run into that fool who owned the house before us, I think I will give him a hard punch in the nose, or at least a string of obscenities. But, even with that ordeal, I'm glad we found the mysterious source of the occasional musty odor we'd detect in the house after a long weekend away. And as a microbiologist, I am every which way but grossed out, and totally relieved to be rid of those grungy mold/mildew towels.

The Real New Year

I always thought of Fall as the real New Year. This is more true than any Fall. In two weeks, I will return to work from maternity leave. The same week, Bo will start preschool! There were many dark days, strung together, end to end, like one jagged tooth after another that seemed to say this day would never come. So when someone asked me if I was going to cry, yes, but not for the reason most parents do.

The Insurance Tango

I don't know why it is that anything more than touching base with Bo's case manager gives me a serious case of the chest-tightening stop-breathing feeling. With a complex case manager, everything flows through her. I don't have to wait on hold for hours at a time, and I don't have to explain Bo and our situation over and over. In fact, I highly recommend getting a complex case manager for your child if your insurance company has such a program. That being said, we are trying to get a preauthorization approval. If that sounds like double talk, welcome to insurance. I won't go into it further than this, because I'm getting bored and frustrated just typing, so imagine you are already onto some other *CLICK* page.

Let's just say that Bo is feeling well. We are back to bi-weekly lab draws. Ahn weighed 12.46lbs, and we are craigslisting as fast as we can take pictures of stuff. Trying to figure out pre-school and part-time infant care programs. Wish us luck.

Dr. P called the other day (why is it that I feel like Ed McMahon has just called when this happens? Like, OMG! Celebrity!! Can't breathe. What do I say? Really, he knows my name?) and said that he has SEVERAL MID patients on Omegaven now.

No Admission Required

You might call it coincidence, or you might call it faith. You might say the prayers and positive energy affected the outcome, or you might say it was already in the works. I know what I believe. Faith is not something datasets or spreadsheets can confirm, but for me, its effects are tangible. Let me just say that at the beginning of what looked like our third hospital admission in 6 weeks, I sent a call out for prayers, and by the time it was Bo's bedtime, we were tucking him into his bed at home. I'm just sayin'. Whatever works.

Angels among us. The Spirit at work. Our hearts and our hands. There are very real people doing very real work that keeps our Bo healthy and alive. They do things that are not listed as "goals and objectives" of their job requirements. They do these things because they are angels among us.

Thank you.

Janky Line

Since Bo's last admission to fix his line 2 weeks ago, his line stopped three times. Twice in the early hours Tuesday morning 10 days ago. And once today. The first 2 times, Jose was able to get it going again. Not today. He and the nurse took Bo to the surgeon's office. Please send prayers that they can fix this without admitting him to hospital.

Close Call

Thursday morning, everything looked fine. The site where Bo's line exits his body is something that is visually inspected daily. It looked fine that morning. I had noticed that it was pinker than I like it when we were inpatient at DeVos after we did a dressing change there the Saturday before last, but it looked fine as late as Thursday morning. By the afternoon it was weeping. I started panicking.

My mind was racing: what if it's a line infection? what if he is septic? what if this blows up so fast we can't catch it? how do you raise a child in the shadow of her sibling's early death? I couldn't stop. We did a dressing change and Bo was crying that "it huwt." I nearly cried myself. I was so freaked out I forgot half the things we needed for this sterile procedure. Thankfully Bo's dad was fully functional. We decided to look again the next day, do another dressing change if needed and possibly go to the hospital. We monitored his temperature every half hour till he went to bed and once when we changed his Omegaven bottle around midnight. It went up to 99'F and came down to 98. All Friday morning it was 97 and some change. We called the surgeon who ordered cultures from the drainage and from his blood, as well as antibiotics (abx) to start that evening.

We were happy to treat from home. Bo had other plans. Saturday after his second dose of abx, his line stopped. It had been difficult to draw blood from for cultures over the last 2 months, which was why we had Altapase (TPA) in the house, but it had infused beautifully until that morning. Then nothing. Pffft. Hard as rock. Again. My brain stopped. We packed up the car, the baby, the kid and a few bags of stuff. As we're headed to the hospital my husband asks if I've called the surgeon so we can go straight to the floor. DUH. No, I didn't, but I would have had my brain been working. So we did, and he did, and we got there in time to watch some movies from Child Life's library, and take a nap.

The transport nurse used the hospital protocol for TPA and worked on his line for 5 hours. A little bit of junk came out of the line, but the clot didn't soften much. So the surgeon put Bo on the schedule for Sunday morning. With a slim wire not too stiff that it would puncture the line, and not so floppy that it would not penetrate the clot, the doc threaded the wire through the line and back and was able to get the line drawing and infusing in 23 seconds. Surgery averted; a simple plumbing job saved the line. We were discharged within 24 hours of admission.

AND yesterday, Monday, his cultures remained negative for bacteria, so the abx have been discontinued. PTL! Ahn was very cooperative throughout, and since the hospital is 2 miles away, I went home with her and slept, fitfully. God is good, all the time. All the time, God is good.

coming of age

Bo has been very stable and our plan is to knock back hours on the pump once we are sure his electrolytes are stable. But we're happy to report that his emesis has stopped and he is full of energy and love. Ahn continues to be very cooperative. And we each continue on our paths.