Feeding Tube Change

Feb 1, 2007 4:03pm

Toby had a pretty good night last night, he slept from about 11-7:30 a.m with just a few times when he became restless and needed his pacifier. I was thankful he rested so well, he's been needing some uninterrupted sleep. They're weaning him off of C-PAP today, and he seems to be doing well with it. We continue to wait.

Oh yes, I forgot to mention that his CT scan came back normal, his ventricles were completely collapsed, which means his shunt is working properly. Yeah! :)

Feb 2, 2007 11:11am

Toby had an okay evening with daddy. They ended up having to change his feeding tube because upon x-ray they found his feeding tube was actually in his esophagus, instead of the valve that goes from his stomach to his intestine. They did take him off of C-PAP last night, and he seems to be faring well, he's on 0.5 liters of oxygen now. He only weighs 7 lbs. 2 oz., so he hasn't been growing much, pray he will continue to get stronger and gain weight. The ENT doctors are talking about doing a scope of his throat and vocal cords on Monday; he will probably be in the ICU through the weekend, so they can continue to monitor what he does without the C-PAP. Oh yes, something I hadn't mentioned is that his bladder is working great. He's out-putting the same amount he's in-putting, and when they cath him once a day they're getting less than 5 ml. Yeah! We hope this continues.

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

No Tubes!

4:38pm

(This is Carrie updating)

Right now they are trying to let Toby breathe just room air. He doesn't have any tubes in - no extra oxygen helping him breathe. Please pray, pray, pray, that he will tolerate this well and not be put back on anything that will help him breathe.

10:13pm

Toby did pretty well on room air, and every once in awhile he would need just a whiff of oxygen to bring his O2 levels back up, so they put the nasal canula back in (oxygen tube) and he's on about 1 liter of flow, which isn't much. He's doing really well, and we're pleased with his progress. Boy, is he a fighter. Before they took the C-PAP off, he was trying to use both of his hands (one has IV's in it) to pull the C-PAP tubes off of his face. He was quite angry about it. He definitely seems to be more like his old self. :)

Bruce's grandmother did pass away early this morning. The Holt and Morgan families appreciate your prayers. She knew Jesus as her Lord and Savior, and He has welcomed her into heaven.

Extubation and Oxygen Levels

(This is Erika again)

Toby got his MRI last night and the results didn't really tell them anything they didn't already know. His brain wasn't compressed too badly and spinal fluid was flowing around the brain which is good.

Although the MRI went well, the night was very rough. Toby was finally extubated (the breathing tube was removed) around 2am and after that he was very agitated. A combination of coming off the anesthesia and a tube down his throat to take the air out of his stomach, made Toby irritable. Once he settled down around 4am, Carrie went back to watching his monitors. Needless to say, she didn't get much sleep!

Toby was again agitated this morning. Finally, the doctors agreed to take the tube out of his throat. They will measure his stomach to make sure it is not filling up with air. If it does, they will have to put the tube back in. Sodium levels are up at normal ranges still which is a good sign. He is back on C-PAP and a little bit of O2, but is still having a few apneic episodes.

The doctors want Toby's sodium levels to stay at normal for at least 10-14 days so that his brain has a chance to heal. I guess when his sodium levels dropped so much they said his brain was very sick. They want to see what happens after his brain has a chance to heal. If he is still having the same issues, they will inspect his shunt and make sure that is not the cause. If it isn't, the last resort will be to trach him. Of course, this is hard news to hear!

Now it is just a waiting game to see what happens. Pray, again, for strength, endurance and that God would work out all the details with Conor and Garrett's care, too!

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.

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.