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.

Transitioning to Formula

Toby's doctor's appointment went pretty well on Friday. His CT scan we don't know much about except that the initial result in the computer said stable. His fontanels still don't feel right, so we will see the neurosurgeon on Wednesday of this week; hopefully we can find out more. His chest x-ray showed improvement in his lung volumes, which is great because the air in his belly has been much better also, which means his lungs have more room to expand! :) We are beginning to transition Toby from breastmilk to a formula called pregestimil (it's already partially digested, and hopefully easier on his belly), so pray that this goes smoothly and doesn't affect his stomach and digestive process too adversely. The boys arrived home safely, and had a wonderful time at Grandma's. They were so noisy tonight, and I wondered if they were extra noisy or if I had just gotten used to the peace and quiet this week! It is good to have them home; they always seem to grow up so much while they are gone.

Shunt Paranoia

Hello :) The older two boys are safely with their grandparents in Michigan. I will miss them, but it will also be a nice break for us - a chance for Toby and I to spend some time together. Please pray for a couple of things - one is when I have been straight cathing Toby we are getting some higher volumes, which means we may have to start cathing him more. Also, his fontanels haven't been very sunken in which could mean a possible shunt failure. He's not showing the normal symptoms - lethargy or extreme irritability, (amont others)..., but when they are babies and the fluid increases in their little heads, the bones can fluctuate with the fluid since they're not fused together yet. I'm a little bit concerned, so we may schedule an appointment with the doctor just to be on the safe side. Pray that his shunt will work again or that we will know if we should take him in.

May 22, 2007 3:44pm

We have a CT scan scheduled on Friday for Toby's head; so hopefully we will have some answers. We may not know anything until Monday, unless the radiologist would read the scan and see something unusual then he will contact the neurosurgeon. He is acting fine, and not showing the normal symptoms of a shunt failure, but I have been measuring the circumference of his head and it has grown 1/2 cm in 2 days. His fontanels still don't feel right, but we're not panicked. I just keep checking in with the neurosurgeon, so we will see what happens. We will also see pulmonary on Friday for a chest x-ray and a check-up. He continues to smile and charm all of us. Yesterday we had some professional photos taken at Target, and they turned out pretty nice. Pray we will know for sure if his shunt is working or not working and if we should take him in sooner than early next week.