We’re at home now, getting a routine re-established for Will.
The Carle Home Health nurse visited us yesterday afternoon at about 2 PM to teach us how to administer Will’s antibiotics intravenously, through his PICC line. It’s a rather involved, nerve-racking process that involves flushing the line with saline, starting the IV pump that gives him the antibiotics over a 30 minute period, flushing it again, and then giving him a small dose of Heparin to keep the line open. All the while, we’re trying to maintain as sterile an environment as possible, and worrying about any random air bubbles.
I gave him a dose last night at about 10:30, while he and Mom were sleeping in Will’s room. And another dose at 7 this morning, again while he dozed in Mom’s arms. We’ve got another dose schedule for a few minutes from now, but we’re waiting for another visit from the Carle Home Health nurse to change the dressing on his PICC.
He’s eating well, but his sleep schedule is a little off, and he’s sleeping a lot. His left leg is getting stronger, and he’s been in a really great mood.
All is great here – maybe tomorrow we’ll go pick out Will’s first Christmas tree!
The pediatric orthopedists just stopped by. Willpower is doing great, and is going to be discharged this morning, after his 8 AM antibiotics. We’ll need to do a follow-up visit next Friday, but we can go home today!
The next update I do will be from home, after we meet with the home health care people and get will his 4 PM dose of anti-biotics.
The PICC procedure is successfully completed, and Will is awake and back in his room, drinking Pedialyte and screaming for formula.
The IV on his right leg has been removed, and the one on his scalp will be removed before we’re discharged tomorrow morning. Right now, everything is pointing towards discharge tomorrow after his 8 AM IV antibiotics dose, so that we can be back at home and with the Carle Care home health people so they can train us and help us administer his 2 PM or 4 PM dose. At this point, we don’t know if his IV will be a 6- or 8-hour dose. We’ve asked, if all things are equal, for 8-hour dosing, but we’re not sure what we’re going to get.
Another sedation, and Will came out of it just fine. He’s been quite a fighter through all of this, and I’m awfully proud of him.
Thanks for your prayers and support, everyone! I’m so relieved that everything is going so well…
PICC line procedure just got pushed back to 3 PM. My hunch is that it will be closer to 5 PM, but that’s my latent optimism.
Jill Fisk brought us Jimmy John’s for lunch. Mmmmm.
Grandpa Bill is holding Will right now, cuddling him under a warm heating pad (used to dilate Will’s veins prior to the procedure) and trying to distract him from the fact that he hasn’t had anything to eat since 6 AM.
Cross your fingers and say a little prayer. For some reason, this sedation is making me nervous. Three times just feels like we’re pushing our luck.
No real changes in plans this morning. Still planning on PICC line at 2 PM, and discharge tomorrow if everything goes well.
Will had a great night of sleep, and had his last bit of formula at 6 AM. Now he can have only Pedialyte until 10 AM, and then nothing else before he’s sedated for the the PICC line.
Will is really feeling great. His appetite is back where it was last week, and he’s starting to move his left leg around noticeably during his twice- or thrice-daily thrashing sessions. While yesterday morning I was very discouraged, tonight I am really happy with how he’s progressing.
His PICC line procedure is scheduled for tomorrow at 2 PM. He’ll need to stop eating formula at 6 AM, and be on Pedialyte only from then until 10 AM, then nothing until after the procedure. He will be sedated again, which is the scary part. After the procedure he will no longer have the IV ports on his scalp and right leg, which is great – they’re getting to be a nuisance.
He’s also going to have blood drawn while he’s sedated, for a series of tests by our three teams of specialists – pediatric orthopedists, infectious diseases, and immunologists. Will is really getting world class attention here, and the doctors and support staff have been amazing.
Also, Will needs observation for a while after he wakes up from sedation, and the PICC line needs to be tested, so it looks like we’ll be here until at least Thursday morning. Cardinal Glennon’s staff has already set us up with a home health care company in Urbana that will meet us when we get home, to set up the IV antibiotics equipment and teach us how to administer it every eight hours. My company has been gracious enough to let me work from home next week to make sure we get Will well-established. Pam will start work on Monday. And Will is going to start school one week from Monday – our provider (Little Hearts & Hands) is absolutely OK with him having a PICC line. The Director is a former nurse, and one of Will’s teachers is also a former nurse, and we won’t need them to administer the antibiotics, but just keep an eye out to make sure nothing happens to the PICC.
I’m looking forward to the doctors telling us soon that everything is OK, and we can go home and start to resume a normal life.
Our steady stream of visitors continued today, with Grandpa Bill and Uncle Andy (you can see from the middle picture what I meant yesterday about him needing a haircut…). Grandma Lois and Uncle Al and Aunt Susan visited tonight, and Susan was kind enough to bring us dinner (Pei Wei!). Will got some quality nap time with Al, and chilled with Susan – they both look like naturals with him. :-)
The staff here has located a home health care company in Urbana to help us administer the IVs intravenously via the PICC line when we get home.
Will hasn’t eaten since 6 AM, as they’re trying to prepare him for the sedatives required for the PICC line operation. It appears, though, that they won’t get to do that procedure today, as they’re overscheduled, so Will can start eating again, and they’re going to plan on doing that in the morning.
Will and I took a nice nap together this morning on the little couch/bed thing that we have in his room.
More pictures in the photo gallery, including some of the massive splint they’re using on his right (good) leg to stabilize and protect the IV port they’ve started there. (New pictures/albums are always at the bottom of the photo gallery pages.)
Overall, everybody is very happy with Will’s progress, so I guess we are too. :-)
Lots of good news this morning, after a good chat with the orthopedic pediatrician team.
Will is recovering well, and there should be no long-term affects from any of this. His drainage tube has been completely removed, and the incision on his left hip is healing nicely.
Will needs to stay here until at least Wednesday morning. They want to keep culturing his blood until then, to be sure the antibiotics are working. The infectious diseases and immune systems specialists also want to keep him around to run some tests.
Right now, Will’s not allowed to eat, in preparation of sedation for installation of his PICC line. He’s even required to take his Tylenol rectally.
All is going well, though.
It’s easy to forget will all the other stuff that’s going on at the moment, but Will is two months old today.
Here’s what he looked like when he was two days old:
As for his birthday request, he’d really like a fully functional left leg, an infection-free body, and discharge papers from the hospital.
See if you can’t make that happen, eh?
I’m exhausted, so this is stream-of-consciousness.
- Will will almost certainly have a PICC line, as I mentioned in the previous post, to give him IV antibiotics for at least four weeks after he’s discharged.
- An immune system specialist stopped by to chat this afternoon, asking lots of questions. Because of the unusual nature of the infection and the unusual way in which Will’s body (didn’t really) react to it, there is some concern about the functionality of his immune system. They’re going to do some blood tests tomorrow to start looking around, but they really don’t expect to find anything definitive. They want us to be sure to get his two-month immunizations on schedule, and I suspect we’re going to be very vigilant about fevers, etc.
- Still haven’t talked further with the orthopedic pediatrician team. They breezed through on their rounds at 6 AM when we were both barely functioning, and we’ve asked for a few more minutes of their time tomorrow. We’ve set an alarm for 5:45 AM, just to be safe.
- The blog comments and emails and phone are just fantastic – Pam really enjoys them.
- I gotta admit that after talking with the infectious diseases doctors this morning, I was pretty depressed. An afternoon with a very cheerful and active Will, thrashing his arms and right leg and smiling quickly picked me up. I just want him to start using his leg normally, and for the doctors to tell us that he’s going to recover completely.
- I ran to Target this afternoon to grab some random supplies with my little brother Andy. He’s a freshman at SLU, and his dorm is just a few blocks north of this Hospital. It’s great to spend so much time with him, but I wish the circumstances were different. He really, really needs a different haircut.
- Another friend stopped by tonight, and said that at least this might make me slow down. I’ve had a hard time thinking about that comment since he left. Maybe I’m just tired.
- The constipation problem seems to have been solved. Six poops today, all very liquidy, which is caused by the antibiotics. One of them was a nice blowout that got all over Grandpa Bill’s pants. Which is even funnier because when Bill’s kids were little, he really, really didn’t like changing dirty diapers. :-)
- E. Coli is a very common group of bacteria. All of us have it in our bodies, in various forms. Will’s infection was caused by a bacteria of the group E. Coli, but what makes his infection unusual is that it’s unusual for a two-month-old to get this type of infection, and when kids do get it, they get very, very sick very quickly. I know most of us think of E. Coli in the context of news stories about contaminated foods, but Will probably did not get this particular bug from anything he ate or drank. All the disease specialists have been asking about who and what Will has been exposed to, and they’re not asking about anything he ate or drank, and they don’t really care when we volunteer the information.
- I think, with everything that needs to happen before discharge (PICC; blood tests for immune system and antibiotic function; drain tube removal; etc.) that it doesn’t feel like it will happen tomorrow. Maybe we’ll get lucky. But I think we’ll be here until at least Wednesday.