Saturday, July 25, 2009

Dodging bullets

Only a small area of Toby's belly still shows signs of last week's infection. His doctor says he dodged a bullet with this one and is pleased with the recovery so far. He extended the antibiotic treatment for another week and we are praying that is enough to clear the problem completely out of his system.

Toby himself seems to be feeling quite peppy. He is full of energy and looks ready to be up and moving. We're still waiting for that day, though. For now, he continues to use his siblings and parents as a taxi service.

The discovery of the week in the food department is Club Crackers. He likes them as much as cheese curls, his former favorite. With most foods, he only nibbles or remains stolidly indifferent. He has chowed down some crackers the last few days. This small milestone is incredibly exciting, knowing that in order for normal eating patterns to develop, he needs to experience the positive feedback of pleasurable tastes plus learn about appetite and how to satisfy hunger himself. Who knew that hunger and taste were such good gifts from our good God?

Friday, July 17, 2009

Heading home!

Toby was released today after a visit to the ER in Ann Arbor. The doctors are pleased with how the infection has responded to the antibiotic. There are different strains of mrsa and the culture report tells them which antibiotics it is resistant to as well as which should work against it. This particular strain has a lot of drugs which should work against it and is thus relatively easy to fight. Hurray! There was a pocket of infection which they lanced and drained. He should be sore for a few days but, God willing, will continue the good recovery he has begun.

Yes, it's mrsa

The culture came back positive so we are off to Ann Arbor again. The antibiotic has helped a lot but there is a pocket of infection remaining. We are not yet sure what treatment will involve but it may include surgically opening it and draining it and/or antibiotics, possibly iv. We will let you know what they think over there.

Wednesday, July 15, 2009

First, the good news:

Toby saw the eye doctor yesterday. He has been wearing his glasses about 6 weeks and they have helped him a lot. When he has them on, his eyes pretty much stay in their proper orbit though they definitely wander when we take them off. His doctor has decided to add some patching for half an hour each day, just to get his left eye working more.

( Actually, we're not usually the ones taking them off. Toby continues to find removing his glasses to be the most effective way to get someone to come running and the perfect antidote to boredom. He slides one finger up the side of his face under the frames and FLICK- they're forward and off. He likes to make eye contact when he does it to be sure we're getting the message. He also already has new lenses. I thought they were cracking but am assured the problem was tooth marks. )

There have been no major changes in the food department. Toby decided he doesn't like his new pediasure. He drinks regular milk from a cup and whatever nibbles of food his siblings can interest him in. Then we tube feed his allotment of pediasure to keep his caloric intake up where it should be. The biggest challenge is taping the tubing together well enough to deal with his increased activity. Too often at the end of a feeding we find Toby in the milk instead of the milk in Toby. Milk baths are good for your skin, though, right?

He has added more words to his signing vocabulary, the most important being "please". He knows it's some kind of magic and will usually get him what he's wanting so he uses it a lot. Milk, water, more, swing, up: he makes two word phrases with all of them. (Yesterday, he sat in that doctor's office and signed "go, please" over and over. ) His latest word is "hat". His dad and brother both wear one and he thinks they're cool.

Are you still waiting for the bad news? Here it is. Toby was back at the pediatrician's today. What started is a small pimple has developed into a largish area of infection on his belly. It may be a staph infection and the doctor is culturing to see if it is MRSA, a particularly nasty, anti-biotic resistant strain. We should know in a couple days. I put this in the 'bad news" column when it more properly belongs in the "reminders that God is sovereign" column. I am praying that God will continue to protect Toby from further complications and me from my imagination.

Friday, July 3, 2009

It has seemed like a long week here. Toby developed a major cough. (We are so thankful for God's mercy and perfect timing which let the doctor catch the infection Thursday when he was there for his regular check up and before it had progressed any further. We are also thankful for the good and thorough care his medical team provides. They continue to be magnificent.) Toby was understandably unhappy for a few days and ended up with steroids stacked on top of the antibiotics, but he is feeling MUCH better now.

Despite skipping his therapy appointments this week and not exercising much because of his illness, Toby has made some exciting progress. Yesterday and today, he began rolling onto his stomach voluntarily and without complaining. He has HATED to be on his stomach and was not strong enough to do much when forced to try. Now he is pushing up well and quite pleased with his new ability. Already, it is making his tube feedings more difficult plus he coiled his O2 tubing twice around his middle tonight. But we are happy to deal with it.

And while still not drinking much, Toby has been showing a lot of interest in solids since he started feeling better. Yesterday, he had his first animal cracker and gnawed on it pretty well. Today: graham cracker. Part of it seems to be the new teeth and a desire to bite and chew more than hunger. But as he has more positive experiences with food, it should help him learn that eating is a good thing.

A long week? Yes. But if all's well that ends well, a good one, too.