CPAP - A Good Day!

Good evening. - Toby's had a good day, he continues to seem more like himself. He's been trying to lift his head up, and he gets ornery when the nurses change his diaper or give him a bath. He's been more awake and wide-eyed, especially when someone talks to him. They're trying to wean him off of the forced air pressure into his nose/airway, and his sats dropped a few times, so they bumped it back up. This is difficult for us because we just want him to be able to breathe without this extra help and come home. His sodium levels continue to be stable. They stopped giving him IV fluids, and he's now getting all of his nutrition through a continuous supply of milk! :) Tomorrow they should do the MRI. Our prayers for today are for Toby to be able breathe completely on his own, for the MRI to happen tomorrow as well as for its accuracy. They're probably going to have to put him under general anesthesia for the MRI, so pray that he tolerates that well also. One last request is for Bruce's parents, especially his mom. Bruce's grandmother (his mom's mom) is not doing well, and she was called to Texas to say her last goodbyes. This was expected, but it's obviously still difficult to say goodbye, and also to be torn in two directions (wanting to be here with Toby and then in Texas with her family). Thank you for lifting us up - God continues to give amazing peace and love. Goodnight.

Stability, but No Answers

Toby is doing pretty well today. His sodium is 134, and they are slowly increasing the amount of milk he is getting through his feeding tube. He's more awake and knowledgeable of the fact that he isn't eating by mouth, so he's more fussy, but we like it that way, because we know he's getting back to "normal". He continues to have the apnea, especially when he's getting into a deep sleep. They decided to put the MRI off until Monday because of a few reasons. They want to make sure his sodium levels are stable enough so the photos of his brain will be accurate (i.e. no swelling of his brain from low sodium). They also don't feel it's an emergency, and since it's the weekend...we wait until Monday. They began weaning him off of the oxygen and the support of forced air, and his oxygen levels dropped some, so they turned the forced air back up, but left the oxygen levels lower. The biggest requests for today are to find out what's causing the low sodium, and for his breathing to improve, so he doesn't need the forced air to breathe. Ultimately we want to take him home feeding by mouth, so that is also a request. My parents are here again helping us with the boys, and my sister was here on Friday to help. We're so thankful that all of the grandparents and aunts have been here and can be here to help us. Have a great day.

(This is Carrie updating)

Hello - Toby's sodium continues to go up, it's at 132, which is the base number of the normal range. They ran some tests on his thyroid to see if this was the cause of the sodium being low in the first place, and everything came back normal.  They're still not sure what would have caused the sodium to drop so low. Tomorrow is the MRI. I'm nervous that it's going to show some damage from possible seizures he may have had while his sodium was so low (seizures that we didn't know he was having). Please pray that his brain was not damaged from the sodium being low, which also caused his brain to swell. We're hoping the MRI will explain some more of the issues he's been having. Even though he continues to have episodes of apnea (not breathing for seconds at a time), his oxygen continues to stay up at 99%, so the breaths he is taking are deep and good, and he is oxygenating his lungs. Please pray that we can get to the bottom of what is causing his breathing problems, feeding problems, and sodium levels. Thank you to everyone for staying up to date on our little Toby, and for praying. We can feel your prayers. God continues to lift us up! :)

Sodium Levels Going Up

(This is Erika writing)

Toby is doing better today! His blood pressure is down and his sodium levels are edging up (Last night they were at 112, 135 is normal. Today they were up to 124). He was under a warming lamp and got too hot last night so they took him off and then he got too cold. The plan is to take the lights off, but bundle him up tightly and see how he does.

The apneic episodes are still a problem. He is keeping his oxygen saturation up at 100%, but he is only breathing 8 breaths a minute and sometimes Carrie has to rub his arm to get him to breathe again. He is currently off the C-PAP and just on oxygen, but Carrie thinks they put him back on since he is having the apnea.

The MRI has been rescheduled for tomorrow. The swelling in the brain has gone down, but they want to wait until it is down even more before they do an MRI. An EEG may or may not be done because they really feel like the sodium levels and the swelling were causing all his issues and not seizures.

This is all I know at this point.