Upcoming Surgeries

So yesterday (4/22), Trent went in for several appointments, (1) Orthopedic, (2) Urology and (3) general Surgery.  It was definitely a hectic day.  Aside from the visit, he also had X-ray on his hip, and Ultrasound on his kidneys.  Couple this with a last second visit for his twin Brother on a bad cough with a pediatrician.  All in all I'd say it was a good day with positive comments from all his doctors.

His Orthopedic surgeon was very please on how Trent's hip socket has actually improved rather than get worse.  We think its attributed with all his physical activities he's been doing to mimic his twin brother (crawling, trying to stand and climbing over stuff).  His orthopedic surgeon compared his xray from when Trent was 6 months and 1 year and it actually showed improvement, his hip socket was actually forming relatively well.  Although not the normal development, it was considerably better and favorable.  On the other hand it WILL still require surgery to completely correct and thus orthopedic surgery can be scheduled for as soon as when Trent turns 17 months old.  This surgery will entail the forming and rounding of his hip socket and re-positioning it followed by six weeks of being in a cast (this will suck).

Shortly after his ortho visit, he went in for his ultrasound of his kidneys, and a visit with his Urologist Dr. Kennedy (of LPCH).  Dr. Kennedy was please with how his kidneys are doing and also said it is growing quite nicely.  He emphasize how important this is because children with bladder exstrophy tends to need to pay closer attention to their kidneys.   With this news, Trent is now one step closer to his epispadius surgery.  Dr. Kennedy does want to perform a visual scope of his bladder (putting a camera through his urethra and checking to ensure all is well).  If this goes well, he will be ready for the surgery sometime this summer (July/August).

So now is the scheduling dilemma,  The epispadius surgery requires a 6 month recovery and cannot include any other procedures.  So this would put the recovery completion at Dec/Jan.  And thus the hip surgery cannot occur until next year.  The hip surgery cannot occur until Trent is at 17 months of age at the earliest and so would also push the epispadius surgery out to next spring as well.

We will inquire for a medical opinion, but will pursue the epispadius surgery as a priority.  It will facilitate him being in cast for 6 weeks better than having the hip surgery first and things going the other way.

On a side note, we also saw his general surgeon for a general visit and status on the baby steps to evaluating if Trent would be a candidate for a "pull thru".  He'll have a MRI first on his lower abdominal region and buttocks area to check for muscles and reflex.

Gaining some weight or else NG/G tube?

Its been a busy past few weeks and I haven't wrote much since the last blog.  Also still working on part II of the 1st year write-up.  

So, this past Wednesday (4/17) Trent went in for his GI and nutritionist check-up.  His Doctor was not pleased at all with his weight gain.  From the last check-up and now, Trent has only gained about 3.5 oz at 11 lbs 13.5oz.  That last check up was about 5 weeks ago.  Normally, a baby should be gaining roughly 1 oz a day; and had he reached this goal, Trent should at least be 13 lbs at the very least.   His Twin brother Troy weighs in at 16lbs 14oz for comparison measure.  Trent does have a fairly decent oral appetite, no vomiting or anything like that.  But Trent is only able to take in about 3-4 oz of milk per feed (for comparison, Troy takes about 5-6 oz a feed).  Trent's goal is 600 calories a day, and at 27 cal/oz of formula which equates to about 23 oz a day and at about 5 milk feeds a day (every three hours), that means he needs to consume about 4.5 oz each milk feed.   We're obviously not at the 4.5 oz a feed.  

So his GI doctor is requesting a stool sample test to see if he's absorbing the nutrients.  She is also throwing out possible next steps if Trent doesn't show signs of improvement on his next visit in two weeks of his weight.  Some next possible step she mentioned is a NG Tube (Nasogastric intubation) a tube through the nasal passage way down to his tummy and feeding him during the evenings.  I of course would prefer that he not be on the tube.  I have heard good things about the NG tube (short term), but if Trent goes on it, it'll be long term.  The NG tube does definitely help with weight gain as you're force feeding.    But drawbacks I've heard is vomiting, gagging and possible affects to the vocal cords and affecting his eating by mouth since now there's gonna be a tube in there.  

So the next couple of weeks, we will increase his "solid" feeds (from two feeds to three) to offset the smaller volume milk feeds and also fortify all his feeds including his middle of the night feeds despite us being in zombie mode.  Every calorie is going to count.    We're also hoping that his stool sample doesn't indicate anything abnormal.  

Shortly after our visit, Trent all of a sudden developed a much better appetite.  He's been able to eat all his rice cereal and his baby puree foods.  We're selecting the high calorie ones.  Since Trent will only consume the same amount in volume, need to trick him to get more calories with the same amount.    Trent seems to like his chicken and beef baby puree foods, I'm guessing he likes the salty-ness.  I've read that OEIS babies tends to lack sodium and have a taste buds for salty stuff.  

So far, Trent's been able to take in about 400 calories in milk and 200+ calories in solid feeds to get 600 calories.  I'm praying that the calories is being transformed into weight gain.  As the engineer I am, i'm tracking his every calorie in a spreadsheet to ensure he stays on track.  

So far, the past few days after the visit, We were able to get Trent to take in about 600 calories.  And some feeds, he's even able to take in close to 4 oz of milk (that's a really good single feed).   He seems to really like his baby puree Beef and spinach, Chicken brown rice type feeds more so then the fruity sweet ones.  Also his rice cereal has been pretty good up from 2-3 table spoon to 3-4 table spoon.  The one thing I learn that may be contributing to his better eating habits is methodology, I have to thank my mom for giving us some pointers and also encouraging us to be more patient and not give up on his feeds at the first sign of refusal but to try to persuade him to eat a little more after he stops. And so far, it's working, able to get Trent to take in another 20-30 ml (or 1oz) and putting in some fruity puree stuff with his dull tasting rice cereal.  

So please Pray for Trent that he shows signs of weight gain.  Our target is for him to his 12lbs 11 oz by his next GI visit.  

Thanks