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.

Tube Clogged

Well, we have had an exciting weekend! Toby's appointment with the GI doctor on Friday went well. She gave us some ideas for relieving the air in his belly and since then it's been much better, and we're slowly increasing his food intake up to 42 ml an hour for 20 hours. Saturday we had a picnic with the moms group at our church, and our day nurse was able to go with us and Toby. It was great; our weather hasn't been humid this week/weekend, and it has been wonderful to be able to take him out places.

This morning while I was giving Toby a medication through his GJ tube, it got clogged. It's a medication he's on because they found a bacteria in his urine culture this week, so they're treating it with this really thick and yucky medicine. We ended up having to take him to the hospital (Radiology) to replace the tube. To explain a little further, the G-tube or Gastro tube is a larger white tube that goes into his stomach. The J-tube (or jejunum) tube is a smaller tube threaded through the big G-tube that goes into his small intestine or jejunum. It was the J-tube that was clogged, I tried flushing it with water several times and even tried Coke, and nothing worked. Thankfully we weren't there too long, and now he has a brand new one for our trip to Michigan. He still has to receive this medication for 2 more days, so pray that it doesn't get clogged again. An answer to prayer that we had this week, is the granulation tissue around his G-tube is going away and NOT coming back. On a tip from a new friend, we stopped putting gauze underneath this round plastic circular disc that holds the tube flush with his skin, and since then we have had no scar tissue. Yeah!! We have lots to do this week before we head to Michigan; feeling excited and a little overwhelmed, but I know it will get done. Have a great evening!

Toby's First Trip! Three Months Home Today!

Toby is doing pretty well. He's had a larger amount of secretions, and since Garrett has a cold, we have been giving him a medication to help keep his lungs clear. They increased his food again today because he isn't gaining as much weight as he should. He weighs about 13 lbs. 6 ounces now. He has been drooling a lot, and still running a slight temperature, which we are attributing to teeth coming in. He's almost 6 months old, and I just cannot believe it. We have been home from the hospital 3 months today!

As we get ready to leave we would ask you to pray for these few requests: 1. That Toby doesn't get a cold or sick before we leave for Michigan or while we are there. 2. That preparations would go well, we have a lot to pack in order to leave. 3. The trip would go smoothly and that Toby would tolerate it well. He hasn't ever traveled more than 20 minutes anywhere, so this will be a huge distance. Plus, I heard the construction on I-75 getting into Michigan is a bear, so hopefully the trip will take the least amount of time as possible.

We are so excited to take a trip to see all of my extended family and friends. On Sunday, July 1st at 10:00 a.m. I will be giving a testimony, singing, and showing a slide show of Toby to the church I grew up in. It's at Bible Baptist Church in Birch Run, Michigan. I am excited and nervous, praying that God will speak through me and receive all the glory for His faithfulness in our journey with Toby.

Friday we go to see a Gastroenterologist to check on his belly with the issue he was having with gas in his intestines, and also to establish a relationship should we need to see this type of doctor in the future. His belly has been doing very well with the new formula. Toby's g-tube site and NOW his trach site has granulation tissue around it, and has been bleeding, so we are fervently praying for this to resolve also. We will see the ENT Nurse Practitioner on Friday also to see if we need to burn off some of the scar tissue with silver nitrate. This makes me very nervous since it can also burn the surrounding skin, especially with all of the secretions that come out around his site.