Some weeks seem longer than others . . .

The weight check on Wednesday showed a positive gain of 6 ounces in the past two weeks. Choo choo- Chugging in the right direction again.

On Friday, Toby reported to the U of M bright and early for the CT scan and bronchoscopy. His pulmonologist was looking to find out why he continues to breathe faster than would be expected for his age. She found airways which are narrow and "floppy". Normal airways would be wider, allowing more air flow, and less flexible, not expanding and collapsing with each breath. So the answer to the question is that Toby breathes faster because Toby is still working harder. The solution is (drumroll please)- continue to let him grow out of it. She also did some deep cleaning while she was down there, removing some pockets of mucous. She says the lung tissue is quite fragile and it is also important to continue with the inhaled steroid treatments. She is no longer planning to try to wean him off the supplemental oxygen this winter.

An unexpected finding was a small cyst at the top of his airway. Now it sounds like a bit of a party was going on in the exam room as the reported number of people in there was in the teens. Included was an ear, nose and throat specialist who had joined the merry band after becoming interested in the case as it was discussed in the hallway en route to the procedure. He was able to deal with it immediately while Toby was already under anesthesia so the cyst has already been drained and sent for analysis. How perfect is God's timing?

The unexpected procedure did mean an overnight stay for observation. Toby got a chance to become reacquainted with some of the wonderful staff on Mott 5west and Grandma got an surprise slumber party.

Toby has had no problems. He is home again and thrilled to be released from all the additional restraints. (In addition to the oxygen tubing, he had an iv in his arm, four wires to his chest and one to his foot. Plus, from time to time, his tube feeding. Movement was difficult- but just try to keep a 1 1/2 year old still!) I think we are all glad to have this grand adventure behind us and are ready for a few monotonous days at home.

Toby saw the eye doctor yesterday. She wanted to see how he was doing without the patching. And he is doing quite well! Hooray for two steps forward that were not followed by one step back. So no more eye doctor until December. (She will continue to check on his eyes as long as he is on the oxygen.)

Today it was off to the pediatrician with an ear infection. And, while we were there, a quick weight check which showed him up an ounce in six days. Not great, but not bad.

Toby is sleeping peacefully now. And after the last 24 hours of dealing with Mr. Needy, we're all resting a bit easier- and very thankful for pain meds.

And up again!

Toby gained 4 ounces in 8 days so is headed back in the right direction. Good news! The downside is that he is eating less by mouth since the increased volume of feeds leaves him with little appetite. I am hoping to be able to play with the amounts again soon to try to find a balancing point that will enable him to get the nutrition he needs and still have enough appetite to experience a normal hunger cycle sometime during his day. But it looks like a process that can't be rushed. His next weight check is in 2 weeks.

His sats have also continued to improve. His supplemental oxygen level had been bumped up to its previous high level when we hit the latest bump in the road. I have been able to cut that back down the last two nights and he has still maintained near perfect high 90's. All this despite fighting his first cold of the season.

Toby was rewarded for his progress with- as usual- another shot. (Someday he's going to decide he doesn't like that doctor's office.) This was the first of his monthly winter RSV vaccines which are given for 5 or 6 months. This shot cost over $3700 each dose. Yes, that'll be times 5 at least this year. Yet even the insurance company agrees with the doctors that Toby's health is vulnerable enough to make this a good investment. A good reminder to us that winter time is praying time. We get the shots knowing that God is his true protection. "Praise the Lord and pass the ammunition."

His bronchoscopy has been scheduled for the 30th. His pulmonologist has decided it's time she physically examined his lungs and is planning to stick a camera or something down in there and look around. Hmmm.

On the home front, Toby continues to explore to the limit of his "leash" (oxygen tubing). His favorite toys are his blocks. He even has a word for them. You can say it, too. Just clear your throat as loudly as you can.

Weight Check

Toby's weight check this week showed no loss and no gain. We have increased his g-tube feedings back up to their original level to try to re-establish a pattern of weight gain and a solid place to start from again. He continues to nibble at some solids and to add a few new foods to his diet.

His lungs are doing well now that he is back on the diuretics. And the last couple nights have seen better numbers on the sat monitor than any in the last couple months. It is encouraging to make progress in sorting that out. I do have some questions for the pulmonologist but am unsure when his next appointment will be scheduled.

Toby is also continuing to get stronger. He can now get up on his hands and knees quite well for brief periods as well as pull himself up on the side of the crib. And he is quite happy to perform for applause. When he does something he considers noteworthy, he claps to cue us. And, I admit, we do our part with cheers. But our hearts continue to sing with gratitude to God.

Another doctor visit . . .

Toby continues to sat better now that he is back on the diuretics. Plus the pediatrician said he sounded great when he checked him on Friday. Good news in the lung department.

The weight check showed Toby down another 8 ounces since Monday, despite the increased feedings this week. That's a total of 18 ounces lost and puts him at an even 20 lbs. The doctor assures his shocked mother that the last half pound is fluid loss from the diuretics and nothing to worry about. He will have another weigh-in next week.