Finally, be strong in the Lord, and in the strength of his might.
Yesterday’s agenda:
0900 – leave for Birmingham
1035 – park at Children’s, realize bottles are still in Deatsville
1100 – Josh takes Carter to PT appointment, I run to nephrology clinic to beg for formula and a bottle
1130 – nutritionist Brooke saves the day with a can of PM 60/40
1200 – Carter has a new boot, finally! & Connie is so proud of his progress!
1215 – lab slip from nephrology, Carter eats apples while we wait to be stuck
1230 – labs drawn, such a big boy! Didn’t even cry with the tourniquet, just with the poke!
1245 – lunch for mommy and daddy
1310 – check in at neurosurgery
1345 – called back
1400 – Dr Wellons says everything looks great with his scar and lower body function as far as he’s concerned, and the helmet is an option to straighten out his head shape, but not an absolute necessity… and since insurance usually doesn’t cover the $4,000+ helmet… we think Carter will be fine without one :) We won’t see neurosurgery until next year!
1500 – head over to nephrology (again) and they’re waiting on us. Nurse Nikki weighed, measured, and got a blood pressure and temp on him. He weighed 19lbs 13oz, 27in long. Mary Jane saw us shortly after we finished vitals, and said his labs looks great – his potassium has leveled itself out even more, so we’re cutting back on the kalexate again. She didn’t even bother having him cathed for a urine sample since he’s not running fever and has been doing so well (plus, she knows that we see the signs and will bring him in if needed). The only thing of concern is his weight! We were shocked… because he’s a healthy boy, not by any means scrawny. He’s always been on the short side – 9th percentile for height :) However, at our last appointment he was near the 100th percentile for weight, and has since dropped to the 50th. He’s gained 8oz since we were admitted last, but that’s apparently not enough. We haven’t been giving him a lot of baby food for fear he’d want even less of his formula… as we struggle to get 20-24oz in him every day. She listened to our concerns, and we told the nutritionist the same, and we came up with a game plan. For his kidney to stay healthy and hydrated, they recommend he take in no less than 27oz of fluid daily… 24oz of that should come from formula to aid in calorie intake. We will feed him some form of baby food or cereal three times a day for extra calories… a major leap from our 1-2oz of baby food twice a day. This could all just be a fluke from him being sick again this month – the gagging and vomiting spells force us to stop baby food feeds in order to keep formula and medicine down – so now that his snot is manageable and we have a routine to keep it at bay, hopefully he will gain in the next two months. Worst case scenario is he drops to the 40th percentile by our next appointment, and they will place a G-tube in his nose to feed him through… this will be a NIGHTMARE! He had an NG tube several times while in the NICU, and was constantly pulling it out. His dexterity is much greater now… so I can only imagine how often we would be at the ER having it replaced! She said he is by no means at a “failure to thrive” stage, and that renal patients tend to have sorry appetites for unknown reasons… but that’s usually in patients that have more severe cases of kidney disease (Note: Carter’s kidney disease is considered mild – not moderate, or severe – MILD – praise God!) So, all that said – please pray that Carter will be HUNGRY! We need this boy’s appetite to increase greatly, or there will be consequences.
1600 – we headed back home. Traffic wasn’t great, and Carter slept most of the 2 hour drive back…
1800 – Walmart… Zaxby’s for sustenance…
1845 – change the bag, bath time!
2030 – why is Carter still so awake? ….oh… the 2 hour nap 3 hours before bedtime… BUT, guess who managed to get on their knees a little bit last night due to his wild hair?! He got tickled with himself when he did it :) This is pretty cool, because we weren’t sure if his hips would allow him to get into this position!
2130 – little man finally sacked out after a super long day
Up Next:
October 11: Dr Harmon in General Surgery for follow-up on colostomy
October 17: Dr Conklin in Orthopedics for follow-up on arthrogryposis and bilaterally dislocated hips
November 28: Mary Jane, CRNP in Nephrology for follow-up on kidneys/nutritional issues
After our nephrology appointment on November 28th, we’ll be admitted under the nephrology team to start Carter on fluids for his urology surgery the next day. The night before surgery they always stop feedings at midnight, and for renal patients this can get tricky for electrolyte needs, so we’ll be admitted just to make sure Carter doesn’t end up dehydrated and is good and ready for surgery the morning of the 29th. This surgery is the first in a series to descend Carter’s testicles, which is normal for babies with prune belly syndrome. Dr Joseph explained that the first surgery shouldn’t entail anything major – expanding vessels and tissue to prepare for future surgeries – and that if he doesn’t start descending them that we shouldn’t even have to restrict Carter’s movement afterward. This surgery is not a huge deal, but any time a little one is subject to anesthesia there is always paranoia on the parent’s part :) We know he’ll do fine, though.
Our new prophylactic, bactrim, along with draining Carter’s bladder by manipulating it manually (mashing on his belly), has worked wonders apparently. We have been UTI free for over a month, and hope to continue that run! Thanks for your prayers, and keep ‘em coming!
Yesterday’s agenda:
0900 – leave for Birmingham
1035 – park at Children’s, realize bottles are still in Deatsville
1100 – Josh takes Carter to PT appointment, I run to nephrology clinic to beg for formula and a bottle
1130 – nutritionist Brooke saves the day with a can of PM 60/40
1200 – Carter has a new boot, finally! & Connie is so proud of his progress!
1215 – lab slip from nephrology, Carter eats apples while we wait to be stuck
1230 – labs drawn, such a big boy! Didn’t even cry with the tourniquet, just with the poke!
1245 – lunch for mommy and daddy
1310 – check in at neurosurgery
1345 – called back
1400 – Dr Wellons says everything looks great with his scar and lower body function as far as he’s concerned, and the helmet is an option to straighten out his head shape, but not an absolute necessity… and since insurance usually doesn’t cover the $4,000+ helmet… we think Carter will be fine without one :) We won’t see neurosurgery until next year!
1500 – head over to nephrology (again) and they’re waiting on us. Nurse Nikki weighed, measured, and got a blood pressure and temp on him. He weighed 19lbs 13oz, 27in long. Mary Jane saw us shortly after we finished vitals, and said his labs looks great – his potassium has leveled itself out even more, so we’re cutting back on the kalexate again. She didn’t even bother having him cathed for a urine sample since he’s not running fever and has been doing so well (plus, she knows that we see the signs and will bring him in if needed). The only thing of concern is his weight! We were shocked… because he’s a healthy boy, not by any means scrawny. He’s always been on the short side – 9th percentile for height :) However, at our last appointment he was near the 100th percentile for weight, and has since dropped to the 50th. He’s gained 8oz since we were admitted last, but that’s apparently not enough. We haven’t been giving him a lot of baby food for fear he’d want even less of his formula… as we struggle to get 20-24oz in him every day. She listened to our concerns, and we told the nutritionist the same, and we came up with a game plan. For his kidney to stay healthy and hydrated, they recommend he take in no less than 27oz of fluid daily… 24oz of that should come from formula to aid in calorie intake. We will feed him some form of baby food or cereal three times a day for extra calories… a major leap from our 1-2oz of baby food twice a day. This could all just be a fluke from him being sick again this month – the gagging and vomiting spells force us to stop baby food feeds in order to keep formula and medicine down – so now that his snot is manageable and we have a routine to keep it at bay, hopefully he will gain in the next two months. Worst case scenario is he drops to the 40th percentile by our next appointment, and they will place a G-tube in his nose to feed him through… this will be a NIGHTMARE! He had an NG tube several times while in the NICU, and was constantly pulling it out. His dexterity is much greater now… so I can only imagine how often we would be at the ER having it replaced! She said he is by no means at a “failure to thrive” stage, and that renal patients tend to have sorry appetites for unknown reasons… but that’s usually in patients that have more severe cases of kidney disease (Note: Carter’s kidney disease is considered mild – not moderate, or severe – MILD – praise God!) So, all that said – please pray that Carter will be HUNGRY! We need this boy’s appetite to increase greatly, or there will be consequences.
1600 – we headed back home. Traffic wasn’t great, and Carter slept most of the 2 hour drive back…
1800 – Walmart… Zaxby’s for sustenance…
1845 – change the bag, bath time!
2030 – why is Carter still so awake? ….oh… the 2 hour nap 3 hours before bedtime… BUT, guess who managed to get on their knees a little bit last night due to his wild hair?! He got tickled with himself when he did it :) This is pretty cool, because we weren’t sure if his hips would allow him to get into this position!
2130 – little man finally sacked out after a super long day
Up Next:
October 11: Dr Harmon in General Surgery for follow-up on colostomy
October 17: Dr Conklin in Orthopedics for follow-up on arthrogryposis and bilaterally dislocated hips
November 28: Mary Jane, CRNP in Nephrology for follow-up on kidneys/nutritional issues
After our nephrology appointment on November 28th, we’ll be admitted under the nephrology team to start Carter on fluids for his urology surgery the next day. The night before surgery they always stop feedings at midnight, and for renal patients this can get tricky for electrolyte needs, so we’ll be admitted just to make sure Carter doesn’t end up dehydrated and is good and ready for surgery the morning of the 29th. This surgery is the first in a series to descend Carter’s testicles, which is normal for babies with prune belly syndrome. Dr Joseph explained that the first surgery shouldn’t entail anything major – expanding vessels and tissue to prepare for future surgeries – and that if he doesn’t start descending them that we shouldn’t even have to restrict Carter’s movement afterward. This surgery is not a huge deal, but any time a little one is subject to anesthesia there is always paranoia on the parent’s part :) We know he’ll do fine, though.
Our new prophylactic, bactrim, along with draining Carter’s bladder by manipulating it manually (mashing on his belly), has worked wonders apparently. We have been UTI free for over a month, and hope to continue that run! Thanks for your prayers, and keep ‘em coming!
