Belly Distension and J-tube Displacement

Well, Toby still has a cold, and his belly has been really distended and full of air. We're doing everything we can to get him to have dirty diapers (suppositories, massaging his belly, exercsising his legs), but it just seems to be getting worse. I have a call in to his GI doctor to figure out what we should be doing next. His feeding tube came out again last night. This time it was my fault because I had him on his tummy propped up on a Boppy pillow and went to turn him over and it got caught. I was able to deflate the balloon and get it back in (a small balloon filled with water is what holds it inside of his stomach). I called radiology and they said the J-tube probably wasn't dislodged enough, so we let it go until today. This morning we had it checked and the tube was still in his small intestine, so that was good! :) We're starting to be regulars in radiology (3 times in 3 weeks!). His urine culture came back clear today - NO bacteria, so that's good news. We also are staying on our Medicaid Waiver for at least another month, so that's great news also. Thank you for continuing to lift us up in prayer!

Updates

So far Toby's cold only seems to be in his nose, and he's coughing some, but he seems to be doing well. We had a Help Me Grow Physical Therapist come out today to give us ideas on physical therapy, which was good. They should come out once a month. We are having issues with our Medicaid Waiver and Insurance again in regards to covering our in home nursing care. Our waiver could go away if we don't use it soon, but insurance could also cut hours. Please pray that this will not happen and that we have wisdom in how to handle this. We feel very caught in the middle, and are not sure who to trust. Toby's bladder infection seems to be going away, he's done with his antibiotic now. We began a new one today that he will be on indefinitely. Thursday we will do a new urine culture to see if the bacteria is gone from his bladder. Next Friday we have our big Myelo Clinic (Spina Bifida) appointments with all of the doctors and specialists, and he also has renal ultrasound scheduled (on his kidneys). Thank you for continuing to pray. Have a wonderful day!

Toby started Occupational Therapy

The weekend was very busy, but we managed to get through. Toby has a cold, his nose has been really runny, but thankfully it's Monday and the nurses are here to hel p out with that. The Occupational Therapist came today - she is the same one that our friend Erika and Carl have for their son Evan. She was great - made Toby do a lot on his tummy and on this exercise ball. He didn't like it very much, but it was good for him. He still can't hold his head up, so the things she showed us will really help. She's wonderful, so it's going to be great!! :) Pray that Toby's cold goes away quickly and doesn't develop into something more serious. The weather has been beautiful - so we're enjoying that! Have a wonderful day.

GJ-Tube Replacement and UTI

Today was even crazier than yesterday with Toby. This morning his GJ-tube (feeding tube) came out. The nurse and I put it back in, but then we went to the hospital to have it replaced. Since the J-tube goes through the larger G-tube and has to curve into his small intestine, they have to do it in fluroscopy (a live x-ray)...to make sure it's in the right place.

Toby does have high amounts of pseudomonas in his urine (a bacteria), so they are treating him again for that. It means he has a bladder infection. This is the second time in the last 3 weeks that they have found this bacteria. The problem with the antibiotic is that it's really thick and you have to crush a pill and mix it with water then put it into his feeding tube. The radiologist that replaced his feeding tube told us today to plan on being back in there on Sunday with a clogged tube if we put it into his J-tube so we called the Pulmonary doctors to see if we could have special permission to give the medicine into his g-tube and therefore his stomach. They were okay with it. The problem with Toby having anything in his stomach is he has reflux and then he could reflux up the medicine and because he can't swallow well he could aspirate it into his lungs. We don't think it will be an issue though because it's not a large amount of liquid.

The urologist also wants us to straight cath him every 4 hours to keep his bladder free any residual urine that might stay in there and then be a breeding ground for bacteria to grow. After he's done with the medication to get rid of the bacteria, they are starting him on a low dose of another antibiotic as a preventative measure for keeping his bladder "bacteria free".

I'm tired, it's been a long day, but hopefully Toby will be on the mend now. His lungs are still not sounding real great, so we will continue to work with that to make sure they are clear.

Oxygen Needed

Toby is having an okay day. He is having some desaturations in oxygen, so we've had to turn on O2 tank through the ventilator. His lungs sound clear, so we're not exactly sure what's going on. I have a call in to the doctor so maybe he can figure something out.

The appointment with the neurosurgeon went fine. His shunt seems to be working well, and we'll just have another check-up with him in 3 months. (Hopefully, no sooner than that!) We still haven't heard anything about Toby's urine culture and whether or not he has an infection, but we should today or tomorrow. Thank you for continuing to check up on us.

UTI

We see the neurosurgeon on Wednesday morning for a follow-up appointment. I think his shunt is working well. He may have a urinary tract infection, we did a culture today and should find out by Friday. I think the Urologist is going to end up putting him on prophylactic antibiotics (preventative) so he doesn't continue to get these infections. Toby should start Physical Therapy and Occupational Therapy in the next few weeks. I'm really lookingforward to this because I think it will greatly help him in getting stronger. We'll keep you updated.

Trip to Michigan

I just wanted to write a quick update. We had a great weekend! Our car ride up to Michigan was smooth (the construction wasn't as bad as what we thought it would be) and Toby did really well. He has been healthy and not needing suctioned very much.

I could feel everyone's prayers for me on Sunday. I believe God was able to use my song and testimony to touch people's hearts!

I will write more about our trip later! Thanks for praying!

July 6, 2007

It's Friday and we're home again!! We had a wonderful week visiting with my aunts, uncles, cousins, grandparents, and great-grandparents, and friends. We took photos of everyone holding Toby, and had a nice set-up with all of Toby's equipment. The weather was perfect - not too humid until the last few days. Conor and Garrett had a lot of fun eating s'mores, sitting around campfires, feeding fish in Grandma and Grandpa's mini pond, watching frogs, catching fireflies, enjoying Grandpa's fireworks, and picking raspberries until we couldn't eat anymore!! I was even able to make freezer jam and brought A LOT of berries back with us. We are tired, but it was such a wonderful trip. It was a blessing to share with my parent's church and visit with friends from there. Thank you for praying - Toby did great - Did you see Toby's web-site has over 20,000 hits!! I know that means that Toby has been thought of and/or prayed for at least that many times!! Amazing!! I will post some new photos soon from our trip.