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.

CT Scan Results

Toby had 2 Doctor's appointments today. We saw the surgeon about his g-tube. His site is looking pretty good, but he still gets scar tissue around it at times and we have to burn it off with silver nitrate. She said that it's probably something he's just going to have; it's in the genes we have!! :) We won't go back to see her for 2 months.

We also saw the neurosurgeon. His CT scan looked great, but he still wants to keep an eye on Toby's head. Sometimes a shunt can be malfunctioning and it won't show up on a CT scan. His fontanals (or soft spot on the top of his head) were bulging for 12 days. He also seems to have a pocket of fluid above his myelo site on his back. (The myelo site is where his spinal column was splayed open, which they closed the day he was born.) About 2 days ago, Toby had some major dirty diapers - like 4 in twenty minutes, and since then his fontanels have been soft and more sunken...so there is something to the idea that when his bowels are full of air they can't absorb the fluid from the shunt tubing (which ends in his bowels and is where the fluid drains from his head). The doctor also mentioned that a viral infection or urinary track infection can display symptoms like a shunt failure, but actually not be the shunt. He doesn't have a UTI, but could have a viral infection because he's been running a slightly elevated temperature and had lots of dirty diapers. Bottom line, The doctor wants to stay on top of things, and we will see him again next Wednesday for a CT scan and to be checked. He still is acting great, and like I said today his fontanels felt great; nice and soft and sunken in.