Nephrologist and Oxygen

Toby continues to do well sitting up in his bumbo seat. He's been on some oxygen when he's sleeping the past few days; I think it's just going to be the nature of things this cold/flu season. He did receive his first synagis or RSV vaccination last week. He will get these monthly during this season because of the major health complications that come with getting RSV, which is a major respiratory virus.

Conor and Garrett are going home with Grandma and Grandpa Fabian tomorrow for a visit; it will be a nice break for mommy and will allow for Bruce and I to have some time together alone and with Toby. Wednesday, Toby will see the urologist. It's a follow up from his renal (kidney) ultrasound. They are finding nephrocalcinosis or calcium in his kidneys; he's actually had calcium in his kidneys since birth. They're not acting like it's anything major, but the Urology Nurse Practitioner did mention that they might refer us to a Nephrologist (a doctor that specializes in kidneys) to see if we should be concerned about this. He does not have kidney stones; so we will see what happens with that.

CMG & EMG

Toby had CMG & EMG tests yesterday. They test his bladder and how high the pressures get before he would void urine on his own. His pressures were a little bit higher than they would like, but overall it went pretty well. We still have to straight cath him once a day, and just watch his volumes. The urologist wanted to put him on preventative antibiotics, and I asked that we wait on this until it's absolutely necessary since he doesn't have reflux up to his kidneys. He is okay with this, but they will test his urine monthly for bacteria to make sure he doesn't get infection. He continues to smile, kick, and move his legs quite frequently. 

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!