Friday, August 31, 2007

Pulmonary Appointment

Thursday, August 30, 2007

Rectal Biopsy


Monday, August 27, 2007

Kicking


Our nurse is sick today, so I am on my own. It's been a very crazy day, and I'm exhausted. All of the boys are napping right now, so I'm getting a little break. Toby had his rectal biopsy re-scheduled for Wednesday of this week, so pray that it goes well. We should have results in 48 hours. Also, Toby has another Urinary Tract Infection, this time caused by a different bacteria. He'll be on antibiotics again!! It's frustrating, but the Urology Nurse Practioner assured me that this isn't all that uncommon with the straight catheterization. Pray for us today! Thank you.

Wednesday, August 22, 2007

Waiver Updates and Coming Tests

Friday, August 17, 2007

Home Care Waiver Updates and Hirschsprung's

God is really reminding me today about letting Him be in control, and that I still have to continually trust Him. We received our notice in the mail that our Home Care Waiver will end on Aug. 31st. There was some confusion over it, and I was on the phone for quite awhile today getting things sorted out. We are appealing the decision and will go to a state hearing on the matter. It's all very exhausting, emotionally and physically. It's frustrating for me also, because I feel like it takes so much time away from all of the boys. God will see us through - The good news; insurance will be paying again for our nursing care for the next 30 days, so we're not without nurses or help; for this we are thankful.
The other update from today is the GI doctor thinks Toby may have Hirschsprung's Disease and wants to do a biopsy of his rectum. This is a disease where you don't have any nerve endings in your colon; which would explain his extreme belly distension because his stool moves through his digestive system and then basically stops and piles up in his colon. If he does have this disease, they would do surgery to take out the parts of the intestine that don't have nerve endings. It's called a "pull-through" surgery. It wouldn't totally take away his bowel issues (he will always have these because of the spina bifida and the neurogenic bowel), but it would help in how we manage it. They'll try to schedule the biopsy some time next week. Here is a web-site that explains this really well:
Again, the doctor isn't positive Toby has this, but they will do a biopsy to rule this out; His symptoms are characteristic of Hirschsprung's.
Thank you for continuing to lift us up - it seems like things are always exciting around here!! This weekend is Bruce's birthday and our 7th anniversary (Yes, it's on the same day - Sunday!). Bruce is getting old, I won't tell everyone that he's turning 34! We're also going to visit his family - a cookout for our nephew Luke, who will be leaving for Iraq this fall. He's in the marines. This will be the first time that some of our nephews and nieces have seen Toby. We're looking forward to time with family. Thank you again for being our partners in prayer! Good night.

Thursday, August 16, 2007

Oxygen Issues and The Snots

Saturday, August 11, 2007

Mic-Key Button Update

Toby did great yesterday getting the Mic-Key button and the barium enema. The Mic-Key may not be permanent because I guess the tube that goes into the small intestine may have a tendency (in Toby's case) to curve around and come back out into his stomach, so we're keeping an eye on him to make sure he is not refluxing up formula. He can't have any food into his stomach because of the risk of refluxing and aspirating it into his lungs. We're praying, though, that the MicKey will be able to stay in. The radiologist thought it was wishful thinking for him to get one this early..we will see! The barium enema didn't really tell us anything yet,; they didn't find anything out of the ordinary. The report will be send to the GI doctor, so we should hear something on Monday.
We have a new Saturday nurse starting today; she will do all of our Saturdays...we're excited to have her start, she's very nice.
Have a great weekend!