Blue Episode - Giving us a Scare

Last night was a rough night. We got a phone call at 2 a.m. that Toby had de-statted and turned blue. The nurse was suctioning out his trach, and he was pretty upset. The doctors think he made have had an episode of central apnea, where his brain didn't tell him to breathe, because nothing was blocking his airway. Afterwards he was still struggling so they put him on a ventilator. As of this morning, the ventilator is not breathing for him, but he's receiving the Constant Positive Air Pressure through his trach (or CPAP). He also had some apneic episodes this morning, and so if he waits to breathe longer than 8 seconds the ventilator will give him a breath. (The machine can be set to a ventilator or a CPAP setting). They're wondering if the apnea might be from the results of having surgery yesterday and the anesthesia still wearing off. Toby gave Bruce's mom quite a scare, and I came right away down to the hospital to find out what had happened. They are going to start his food slowly today, into his stomach. It was a rough evening, especially for Lon Nell. Sometimes I wonder how much more we can take. It seems just when things start to look good, he has an episode that sets him backwards. We continue to trust the Lord that He is in control. He continues to ask, "Do you trust me?" I do, Lord, I do. Help me to trust every moment.

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!