Pulmonary Appointment

Hello :) Toby's pulmonary appointment went very well today. His chest x-ray looked great. The doctor was a little bit concerned about the wheezing he heard in his lungs and that we hear at home, so he's putting him on another medication. The other thing we're really watching is his weight. He lost weight last week, and so we called the nutritionist and they increased his calories, and he gained it back, but we are still needing to keep a close eye on it. It gets confusing because each specialist weighs him and it's different on every scale! We just try to base it on the way we weigh him at home. The next big appointment is the sleep study in 2 1/2 weeks. The pulmonologist will be relying on this to really tell him how well the ventilator is supporting Toby. That's all for now - we're going to enjoy the beautiful weather this weekend with family. Have a great Labor Day.

Rectal Biopsy

Toby's biopsy went very well. He did great, we probably won't know the results until mid-next week because of the holiday and the GI doctor is out of town. My parents and one sister are coming for a visit this weekend, so we're looking forward to spending time with them! Toby has a chest x-ray tomorrow and a check-up with the Pulmonary doctor. We love Toby's pulmonary doctor, so we look forward to these appointments - they are always very beneficial. Have a great weekend!

Kicking

Toby is such a joy! When I was getting him ready for bed tonight he was kicking and kicking his right leg. It's just fun to see him move a little bit more than he normally does. He also is chewing on everything!! I think he might cut a tooth soon. (Update August 24, 2007)

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.

Waiver Updates and Coming Tests

Toby is doing pretty well. He has a rectal biopsy scheduled for Friday, Aug. 31st, and they are also planning on doing another sleep study in the middle of September. The sleep study will determine how well the ventilator is supporting him, and if the settings are correct on the vent. His new Mic-Key button feeding tube is working very well. We are going to appeal at a State Hearing the decision to disenroll Toby from the Ohio Home Care Waiver. They have good reasons to be dis-enrolling Toby, because technically he has not used the services to cover the nurses - our insurance is still paying for the nurses, but everyone we have spoken with from different State Agencies have recommended the hearing - just to gather information and to advocate for Toby. Conor starts pre-school this week at Worthington Christian; we met his teacher today and I think it's going to be wonderful. One other prayer request that we do ask for - My Grandfather is going to be having an extensive surgery on his back on Sept. 4th, please pray for this. Thank you so much for continuing to stay up to date on Toby and our family! -Carrie

Home Care Waiver Updates and Hirschsprung's

First of all, Toby is doing MUCH better. I guess his lungs looked GREAT on the x-ray; We think his body was just fighting off a virus, and since he's hooked up to a pulsox 24/7, you just notice more. He's in a better mood, and doing really well.

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:

http://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/hirschsprung-disease/Pages/ez.aspx

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.

Oxygen Issues and The Snots

Toby is trying to come down with something right now. Yesterday he had a fever, and was having oxygen desaturations in the afternoon. His lungs have been junky, and he was on extra oxygen all night last night. We took him today for a chest x-ray, and don't know anything as of yet, but the radiologist wasn't concerned enough to send him to the hospital to be admitted, so that's good. They want us to keep him on oxygen for the next few days to let his lungs rest, and we started him on orapred (a steroid) to keep them open. We know there's been a respiratory virus going around lately, which has several kids in the hospital...so we're keeping a close eye on him. Thank you for keeping up to date on Toby!

Mic-Key Button Update

First of all, thank you to everyone who are praying about Medicaid. The nurse hasn't called yet to schedule an evaluation time, but I will let you know when.

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!

New Seating and Medicaid Waiver

Nothing huge to report. Toby's having a good week. I bought him the Fisher Price Space Saver High Chair yesterday. It's a booster seat type chair that has a tray and good head support as well as the 5-point harness system, so we can sit him up more and he can play with things on his tray. He seems to do well in it. Friday we have to go to the hospital for a barium enema - they want to see how his digestive system is working, and also they're putting in the MicKey button (new feeding type of tube). Evan's pulmonologist told Erika (his mom) that there's a very bad respiratory virus going around right now - the hospital went from having 9 patients to 21 patients the next day with it, so please pray that God will protect Toby when we go for his appointments on Friday. 

Just in - a new prayer request. They're threatening to pull Medicaid Waiver on us again. They will be sending out a nurse to do another evaluation. I'm so frustrated and tired of dealing with this. Please pray, pray, pray - if they pull waiver, it will mean a lot of out of pocket expense for us - Right now the waiver helps to cover doctor co-payments, prescriptions, and therapy. Plus when insurance decides not to pay for in home nursing care we will not have nurses either. I'm trying not to panic, and just trust, but please pray. Thank you.

Mickey Button in our Future?

Toby saw the surgeon on Tuesday about his g-tube, and it's doing great - no granulation tissue. They are going to try and put in a MicKey button next Friday. It's hard to explain, but basically it's a button that his feeding tube will screw into. The button has the tube going into his stomach and small intestine, but when he's not getting fed, he won't have a tube hanging off of his stomach, you can detach it. This should help take care of his feeding tube coming out all the time.

His his x-ray showed that his hip is not out of place, which is great, but I still have more questions for the doctor about one leg being shorter than the other. You only notice when you pull both of his legs straighter.