Rough Night

Last night was a little bit rough for Toby and Mommy. He had an upset stomach from gas, and something was bothering him, so he didn't settle down until 2 a.m., and that was with some help from a sedative. His morning was good, but around 1:00 p.m. he started dropping his oxygen levels again. The doctor thinks his airway is constricted, so they put a tube down there to open it up. His stridor (noisy breathing caused from a restricted airway) is getting worse. He now has the noise even when he's calm (in the past it could be heard mostly when he was just upset). They are going to have the ENT doctors in there this afternoon to do a scope and find out what's going on with his vocal cords and airway. We're hoping to meet with the ENT doctors, neurosurgeon, and PICU doctors soon to figure out where we go from here. Please pray that we make the right decision. I've been doing research and finding out different options we have, and it's hard to know what should happen next (i.e. should we try a decompression surgery or not). His breathing does not seem to be getting better, so we will need to figure out what to do. Thank you again for praying for us. Carrie & Bruce

Back in the PICU

Toby is back in the PICU again (they moved him back there Tuesday afternoon (January 30th, 2007) after some breathing episodes he had). He's been holding his breath when he's upset, and dropping down his oxygen levels (little stinker!), and the last time he did it, the PICU doctor thinks it's possible that he aspirated a small amount of saliva and this blocked his airway causing him to drop oxygen and turn blue. They moved him back to the PICU to be able to watch him better and put him back on the C-PAP. They're also going to do a CT scan this afternoon to check the ventricles to see if his shunt is malfunctioning again. They're already talking about trying to take off the C-PAP tomorrow (Thursday). We've also been asking the question about why his sodium levels dropped in the first place a few weeks ago, and the PICU doctor thinks his shunt was already malfunctioning when we first arrived at the hospital, which would cause his electrolyte levels to be out of balance. It's possible, I remember thinking his head felt a little swollen, but not really knowing for sure what normal fontanels (or soft spots) should feel like, we just didn't know. Now we do! :) It will be up to the ENT (ear, nose, & throat) doctors to figure out what to do about his vocal cord paralysis, and swallowing difficulties. Originally they were planning on doing a video swallow study on Friday, but this may get pushed back until he improves with his breathing.

Bruce and I just want to thank so many of you - family, friends, co-workers, and complete strangers for praying for us and for Toby. Thank you for signing our guestbook also - It is so encouraging to us to read your thoughts and entries. We will continue to keep everyone udpated. - Carrie

Oxygen Dropping and Apnea

(This is Erika updating)

Toby's MRI is scheduled for 8pm tonight. Just pray for him as he is going to be put completely under and have a breathing tube put in for the procedure. Pray also for the doctors as they look at the results that they might have wisdom about the next step.

Last night, after Toby's oxygen dropped a few times, the doctors decided to put him back on C-PAP. He is also still on a bit of oxygen. While on the phone with Carrie she had to remind Toby to breathe a few times. His respirations would drop to 2 or even 0 breaths a minute. She would stroke his arm and get him to breathe again.

The warming lights are off and so far he is maintaining his body temperature. Pray that that continues. His sodium also continues to stay up. The doctors are anxious to find out why his sodium levels were down in the first place. Hopefully the MRI will be able to tell them a lot!

God is truly giving them supernatural strength right now, but at the same time I know it looks like a tunnel with no end. Please pray for continued encouragement and strength as they trust God through this journey!

Moving to the PICU

This is going to be a short update. I have had bits of conversations with Carrie this afternoon, but there is so much activity going on in their room right now it is hard to stay on the phone long.

The ICU doctor came and when he saw Toby said they needed to be moved to the ICU. Since going down there Toby's breathing became worse and he was having a lot of apnea episodes. He was put on C-PAP (which provides a constant flow of air into his nose to support his breathing). Since being put on C-PAP, he has perked up a bit and is sucking on his pacifier again.

The doctors have been doing a lot of tests on his blood and have found out that his sodium levels are low. They will start him on a saline solution. Toby will also have a PICC line put in for precautionary antibiotics. An EEG will probably be done to make sure there is no seizure activity going on that they don't know about.

This is all I know at this point. I hope to finish my conversation with Carrie when she gets a moment and then I will update the webpage again. Thank you so much for praying! It means a lot to them!