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 Levels

They tried to take Toby off of the oxygen today, and his oxygen levels dropped down, so he's back on. We're asking the questions about what needs to be done for him to come home. First of all, they want to find out why his sodium and potassium levels have been fluctuating or at least see the levels stay within a normal range. The last few days his potassium was lower than normal, but not enough to alarm doctors, and today it was back in the low end of the normal range. He's on an apnea monitor right now, and they're recording what he does and how he pauses in his breathing. From this they will decide how severe it is, and may even do a sleep study on him. After that they want to get him off of the oxygen and see if his feeding issues resolve. Not all of these things have to completely be "normal" for Toby to go home. He could go home on an apnea monitor, oxygen, and/or a feeding tube, so we wait and see what happens. We're praying all these things become normal, but if not we will be trained on how to take care of him. So we wait and pray.

Unless, YOUR Law Had Been My Delight!

Jan 27, 2007 1:22pm

Toby is now out of ICU (yeah!). He's been moved to the 3rd floor, which is the neuro floor. He seems to be less fussy, which is good. They're talking about doing another scope of his vocal cords and a swallow study next week to see if the feeding tube will still be needed after we return home.

Jan 28, 2007 5:02pm

Not much has been happening over the weekend. Toby continues to have times of fussiness and it's hard to tell if he's in pain or it's gas. He continually is being fed through his feeding tube, so we don't know if this has something to do with it. When he sleeps really deep he still pauses in his breathing (apnea), and sets the alarm off because his oxygen drops down. Then he will take a breathe and the oxygen goes right back up. He's still getting just a tiny bit of oxygen 0.1 liters. Tomorrow we will be talking to the doctors about what needs to happen to bring him home. The back and forth from hospital to home is starting to wear on Bruce and I. It's hard on the boys too - it's hard to parent in two different places. Sometimes I wonder how much more we can take, and then I remember that God is with us moment by moment. He knows, and will sustain us, and the boys too. Today I read some verses that say this:

Psalm 119:90-93 "Your faithfulness endures to all generations; You established the earth, and it abides. They continue this day according to Your ordinances, for all are Your servants. Unless your law had been my delight, I would then have perished in my affliction. I will never forget Your precepts, For by them You have given me life.

We continue to cling to the words from scripture. I continually remember the promises that God is faithful, He is with us, and is using this to bring HIM glory. He has an eternal purpose we cannot see - to draw others to HIM. I pray that we are allowing God to use us to be a witness of his grace, mercy, and unending love. He never wastes a single hurt that we endure, we can believe HIM that He will never abandon us, He is always with us.

Update on the Whole Family

Toby had a pretty good day, a little fussy probably from the surgery, but he seems to be improving. He's only on about 0.1 liters of oxygen, which is barely nothing, and half the time the nasal canula isn't even in his nose, but it's there just in case. Twice today he got so upset, he held his breathe on me and turned purple - he's an ornery kid already! :) My parents left today, and my baby sister Shauna is here for the weekend to help us out. It was hard having mom and dad leave, but we're so happy to have Shauna here too. God continues to provide this care for us and our kids. It is starting to wear on us, though. We're ready to have all of our kids home, so we can take care of them and give them what they need. On top of this both of the boys are sick - Garrett has an ear infection, and Conor is running a fever and has cold symptoms. Pray they are well before Toby comes home, and that Bruce and I don't catch what they have. I'm sure not a lot will happen this weekend at the hospital - hopefully next week we will start hearing about steps to be taken to come home. Good night!

Shunt Surgery Went Well

(This is Erika)

I wanted to let everyone know that Toby's surgery went well! His shunt was partially occluded and so it should help now that they have it working properly. He is off the ventilator and back on just the nasal canula of oxygen. Carrie said that he is still fussy, but not nearly as agitated as yesterday. Today the pacifier actually calms him down (yesterday nothing would). Carrie is hopeful that fixing the shunt will put Toby on the road to recovery. The doctors will keep an eye on him (especially his apnea) and they will probably do another swallow study before they leave.

Thank you for praying! God is definitely working!

6:19 pm 

(Carrie updating)

Toby continues to do well today. He's such a fighter - He was trying to pull out his nasal canula out of his nose, and this afternoon managed to pull the feeding tube out about 10-12 inches. The last time I spoke with Bruce, they were coming in to put it back in. They're talking about moving him to a regular floor in the morning. As he continues to improve, we pray that he can totally be breathing room air very soon. They tried to put him on room air today and for some reason he needs just a little bit of oxygen to keep his sats normal. Also, pray that his swallowing will improve to he can eat by mouth and not go home on the feeding tube. We're so thankful for the improvements he has made.

Shunt Tap and Fussy

They tapped the shunt and found some elevated pressure so tomorrow morning at 7:30 a.m. he is having a shunt revision surgery. Please pray that this will go well and relieve his irritability (he's been very irritable which is a sign of shunt malfunction). Also pray that he will be able to breathe well after extubation (taking the breathing tube out after surgery), and recover quickly. I (Carrie) am staying with him tonight and am anticipating a very long night with his fussiness, but am praying this will not be the case.

Rough Night, but Better!

Toby had a little bit of a rough night - just uncomfortable and acting like he was in pain. He's been doing well on the nasal canula with just about 1 liter of oxygen flow. He's having less apneic episodes. Right now the neurosurgeons are tapping the shunt to test for pressure. His heart rate has dropped down some to sound off the alarm, so we're not sure what that is about. Pray that he won't have any new problems, and continue to improve. We really want to bring him home. Also, if you would be willing to help us out by sitting with Toby afternoons or overnight please contact Erika Weise.