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.

Improvement

Toby's feeding pump is doing much better. We were still having issues, but I think we finally have it regulated. Toby seems to be cutting his first tooth. He is drooling a lot, and has had a little bit of a temperature. Garrett is also cutting a tooth and has a runny nose, so please pray that Toby doesn't get a cold or get sick before we head to Michigan in 2 weeks. I really need everyone to be healthy!! His fontanels (soft spots) are feeling pretty good, so we are just continuing to monitor that. This week we have had Vacation Bible School at our church. I have been teaching the Pre/K kids, and Conor and Garrett have been participating. It's been a lot of fun, but we also miss Toby, so we have been spending a lot of time together at night!

Feeding Pump Trouble Shooting

I think we may have finally gotten the feeding pump figured out. Last weekend I had e-mailed the company that makes the Kangaroo Joey Pump, and had been talking to a guy from their research and develpment department that tests the feeding pumps all the time. He gave me a few things to try, so we did. It ran great one night and then on Wednesday night, it ran too quickly again the other night, so I e-mailed him, and he called today. Come to find out the feeding bag is only supposed to hang 6 inches above the pump not 18 inches (like it was). We are trying this today to see what happens, but we're hopeful this is exactly what it was all along. Friends are coming in to visit this weekend from Virginia - Sonya Judkins, her 2 boys, and her Londa Foster. We are very excited to see them.

Results and Feeding Pump Problems Solves

Toby's CT scan came back normal today, and his fontanels have been feeling better. Our neurosurgeon wants to see us back in one month; so we will keep an eye on him.

Toby's feeding pump worked like it should have last night! :) I had contacted the company that makes them by e-mail over the weekend, and one or their employees in research and development actually called me yesterday to talk through some of the issues because they had never heard of this happening. We changed a few things, and it's working better!! :) Toby also seems to be doing well on the new formula, so we're thankful for that also. Have a great day!

Daily Updates

Toby had a strange weekend. Friday I was concerned because he wasn't having dirty diapers like he should, and then he began to have several, so that was a huge answer to prayer. His belly was full of air, and we managed to work that out of him. On Sunday, he was having several oxygen desaturations, but his lungs were clear and his secretions were thin. This morning Bruce and I changed out his trach, and things have been much better! We're still having major issues with his feeding pump. They changed it out twice last week, and it is still giving him his food faster than it should. Pray we get this resolved. We're planning on heading up to Michigan to visit all of our family the end of June into the first part of July, and I want everything to be ready and working properly before we leave. We don't need any emergencies while we're up there! :) Toby sees the neurosurgeon on Wednesday and will have another CT scan. His fontanels seemed to be better, more soft and sunken, so we will see what happens on Wednesday.

Feeding Pump Issues and Cathing

Toby is still adjusting to the new formula, and we're having issues with the feeding pump. They have replaced it twice and it is still running his food way too quickly (3 hours faster than it should). I'm not sure what the issue is. His belly has been more full of air this week, so please pray that he will continue to adjust well or that we will know if we need to change his formula.

His urinary volumes have been higher too, so we are cathing him more often. This is disappointing, but in order to prevent infection, we need to do this. All in all it's been a pretty good week. We will see our neurosurgeon again next Wednesday. Toby's fontanels are feeling fairly soft again, so I'm just praying that if the shunt is malfunctioning we would see a significant change on the CT scan this week. Thank you for continuing to pray.