Tracheotomy

Toby got his tracheostomy this afternoon and he is recovering well. They are in the process of weaning him from the ventilator that they used during surgery. Carrie said he has a bit of an air leak around the trach and so they can hear a little of his voice (This is a blessing. Many parents are not able to hear their trached children's voice).

Thank you for all your prayers today! Continue to pray for strength and that their family might be home together again soon!

Decision for a Trach

Hi Everyone. This is Erika updating. Toby has still had episodes of desaturation (oxygen levels dropping). Yesterday he had a CT scan done and it showed no compression on his brain stem. His spinal fluid is moving very well (which is good). This means, however, that a decompression surgery would not help his breathing issues at all. Therefore, the only option right now is a tracheostomy. Because he has had quite a few episodes of turning blue, they want to put the trach in either tonight or tomorrow morning. Then the doctors will need to decide whether he is ok with just a trach or if he needs a ventilator (breathing machine) as well.

As a mother of a child with a trach and ventilator, I know how unsettling the thought of a trach can be. I also know that Toby will be a happier baby when he can breathe better! His parents will "breathe" better, too.

Thank you so much for your prayers during this time of transition. Carrie and Bruce have a lot to learn over the next few weeks, but God will give them the strength and they will do a wonderful job!

Mixed Up days and Nights

I think Toby's days and nights are mixed up, because he didn't get to sleep until 2 a.m. again. Little stinker! When he's awake during the day we're trying to read to him, play, show him toys, etc., so he will stay awake a little longer, and then hopefully sleep longer at night. He's having a great day today, though, very content - not dropping his stats. He pulled out his nasal trumpet, I think it was bothering him! :) We're hoping to meet up with the ENT doctor tonight to discuss his opinion on the vocal cord paralysis - what's causing it. We will keep everyone updated!

Scope - No change

Toby had a rough afternoon also, dropping stats and not breathing well. They did a scope and saw no change (right vocal cord is completely paralyzed, left vocal cord is intermittently paralyzed). They put a tube of sorts with a nasal trumpet through his nose to help open up his airway. He has severe retraction when he breathes, his little chest just caves in so much, and you can tell he's working hard. This may be one reason why he's not gaining weight; using all of his calories to breathe instead of grow. Tomorrow we're waiting for the main ENT doctor to review the video of the scope and get his opinion about the matter. Pray we have the wisdom to ask the right questions and find out what the next step is. We don't know if we should push for a decompression surgery when he's so young. Bruce is staying with him tonight. My parents come tomorrow to help us out with the other two boys, so that will be very helpful. Goodnight.

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

Stop Scaring Mommy - Turning Blue

Toby is doing about the same. He is on 0.2 liters of oxygen, and they have tried weaning him off of it, but every time, he drops his sats (oxygen) and doesn't do well. He seems to need just that little bit. The doctors began fortifying the milk today to help him gain weight. Last night (Sat.) he gave mommy quite a scare. He was upset and held his breathe, and then turned blue. Nurses came running in, and thankfully by this time he had started to take a breathe. It scared me, but he recovered well, and didn't do it again. His difficulty breathing seems to be due to his vocal cord paralysis, which he could grow out of, but may not be able to. It's difficult to know at this point when he might go home; it could be awhile, especially with the episodes he has. They may do a scope of his vocal cords tomorrow, and a renal ultrasound. This is an ultrasound of his kidneys, which is pretty routine for babies/kids with spina bifida - want to make sure they're not enlarged. They did decide to quit cathing him since his outputs are so great! Yeah for this! We continue to pray that his vocal cords begin working and his swallowing will be functional before we bring him home!

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.