Sunday, January 29, 2012

Little Miracles

Family photo op: Theo's first field trip outside!
We have had an incredible week.  I wish I could do it justice by putting the week into words, but I cannot.  All I can say is that we have a little miracle, and his name is Theo.

Theo recovered nicely from Wednesday's surgery.  He was not too happy with his nurse or his parents on Wednesday when he was not allowed to eat, but once he was able to get some food in his belly and some morphine to take off the edge, he was a much happier camper.  We had hoped that we could let the new catheter heal for a couple of days after surgery before needing to start dialysis, and so far, our hopes have been greatly exceeded.

Tuesday, January 24, 2012

A Better Week

Last week was a discouraging one.  Between the infection, the removal of the catheter, and way too many needle sticks to count, Theo had a rough time.  Personally, I was a basket case.  The 49ers even joined the party.  As of yesterday, though, I think we've turned over a new leaf, and I feel refreshed.

Tomorrow (Wednesday) at 11 am, Theo is scheduled for surgery to replace the dialysis catheter.  I met the surgeon and anesthesiologist who will be operating tomorrow, and I am looking forward to having the catheter back in place for dialysis.  If the rest of Theo's NICU stay is uneventful, this should be his final surgery before he comes home.  (But, I am not getting my hopes up!)  We've been fortunate that Theo's renal labs have looked good over the last few days, which has given the nephrologists and surgeons the luxury of waiting so long to replace the catheter while the antibiotics work their magic.  If his labs continue to look good, then Theo will not need to start dialysis right after surgery, either, which will give the catheter more time to heal.

Saturday, January 21, 2012

Another Field Trip to the OR

Theo and his dad in the OR prep room
Nick and I are currently sitting in the family waiting room for the OR.  It is amazing how quiet the OR floor is on a Saturday compared to a weekday.  We are the only people here.

The reason for the field trip this time is to remove Theo's tenckhoff (aka dialysis) catheter.  His peritonitis is a recurrence of the same nasty bacteria that he had before.  The recurrence could have been caused by two things: one, the bacteria may not have been adequately treated with the last round of antibiotics, or two, the bacteria may have adhered to the catheter.  In the event that the bacteria has adhered to the catheter, another round of stronger antibiotics may not be effective to eradicate the infection.  As of yesterday afternoon, we thought that we were going to try to treat the infection with 21 days of antibiotics.  However, after involving the Infectious Disease team, the consensus from the nephrologists is to be aggressive in treating the infection.  As a result, it was decided last night that Theo's catheter will be removed today.  He will be treated with antibiotics through an IV for the next couple of days, and then a new catheter will be surgically placed again early next week. During this period of time, Theo will not be on any form of dialysis.

Thursday, January 19, 2012

More Fun With Infections

Theo is a trooper.  He spent two days under a warmer following surgery, but has since transitioned back into his crib.  He has endured a sore belly, lack of food, and lots of handling by surgeons, nurses, and doctors without much complaint.  We are so proud of the little guy.

Friday, January 13, 2012

Successful Surgery!

All clean before surgery!  Thanks, dad, for covering him up
Theo's surgeon just came to let us know that the surgery was successful.  He said the PEG tube is already "water tight," but it will be a day or two until we start dialysis and feeds again.  Nick and I are waiting to go and see him now.

We are thankful for another successful surgery!  Now we will pray that it remains water tight, that there is no infection, and no other complications.

Thursday, January 12, 2012

Theo's Second Super Hero Surgery

Theo loves when dad rubs his head
Theo has continued to make progress over the last week.  He looks healthy, and acts healthy.  He passed the 9 lb mark at the start of the week, and now weighs 9 lbs 5 oz.  We've passed one milestone: newborn clothes are now too small for Theo!

The upside to throwing up on yourself: naked time!
Progress has been made on the dialysis front, as well.  Theo's dialysis fill volume is now up to 150 ml, and he is now only on dialysis 18 hours per day.  Ideally, the nephrologists like to have 50 ml of dialysate per kilogram of body weight to ensure that the Cycler (the dialysis machine) works properly, which would put Theo's ideal fill volume around 200 ml right now.  For perspective, 200 ml is equivalent to almost 7 ounces.  That's a lot of liquid to put into a 9 lb body!  The Cycler should work well around 40 ml per kilo, though, so we are basically right there.  However, Theo has not started the Cycler yet.  The team is waiting until he has recovered from tomorrow's surgery.

Thursday, January 5, 2012

What a difference a day makes!

Thank you for all the extra prayers!  Theo seems to be feeling much better today.  The fever is gone, and all other systems seem to be working better.  He seems a lot more comfortable today and has spent more time awake than any other day in the past two weeks.  So far, there has been no sign that the bacteria caused the fever, which is an answered prayer.

Here is a shot from yesterday.  The IV had to be put in his head, but he did not seem to mind too much.

Now, here is Theo today!  Nick caught a smile on camera.

What a difference a day makes!

Wednesday, January 4, 2012

The Fight Continues

For those of you praying for Theo, please say an extra prayer for him today.  He came down with a fever overnight, so the doctors are starting him on additional antibiotics to be on the safe side.  That is the cliff notes version.  If you are interested, I'll provide some more context below.

Feeling better = play time!

As I last wrote, Theo developed peritonitis on Monday, December 26th.  The nephrologist started him on antibiotics that same day.  The doctor knew that it would take several days to get the specific bacteria identified, but opted to use two antibiotics in Theo's dialysate that treat approximately 99% of bacteria.  Theo's condition seemed to improve very slightly over the next couple of days, but he was clearly still not feeling well.  He started retaining a lot of fluid, causing him to gain over 1 pound in 2 days.  (Proportionately, that would be like most of us gaining 15-20 pounds of fluid weight in that timeframe.)  He was quite the chunky monkey.