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| 5-6-12 cuddles with Mommy |
Brody still hasn't taken his milk from a bottle except for just a few times and it was only a few milliliters each time. On Thursday he had an upper GI test just kind of routinely to see if anything was going on. I didn't get to go with Brody to get the test done because I was learning how to use the home apnea monitor and feeding pump that was delivered to the hospital for us to take home but I'm kind of glad I didn't get to see it. The nurse said Brody did very well with it but when Ryder was about a year old he had an upper GI done and it was traumatizing to say the least. Ryder wouldn't drink the barium from a sippy cup so they literally squirted it down his throat with a bulb syringe and then he vomited for several hours afterwards and was very lethargic. Not pretty. Anyways, Brody's upper GI showed that he might have Pyloric Stenosis and then Friday they did an ultrasound that confirm it. Pyloric Stenosis is where the Pylorus (muscle in the stomach) is too large and doesn't allow food in the stomach to pass into the intestines. This explains why he's had such mucussy spit ups even though he's doesn't have food in his stomach, and when he does, he vomits. The nurse practitioner said she was going to contact the surgeon and schedule surgery. Later that day, someone from surgery (a resident, I think) came to talk to me and said they were going to hold off on surgery because it could just be irritation from the TP tube in which case it would resolve on it's own. This kind of frustrated me. No, I don't WANT Brody to have to have surgery again but to me it sounded like the right thing and this way we'd go ahead and fix the problem and maybe we could really get him on a bottle. The doctors and nurses talked and decided to wait a few days and do another ultrasound to see if it's getting better or worse. The follow up ultrasound from this morning (5/8) showed the pylorus was significantly larger than on Thursday and confirmed that it's definitely pyloric stenosis. Surgery is scheduled for tomorrow (5/9)afternoon. The surgeon will go in and cut the muscle fibers allowing it to open up. The surgeon is going to try to keep the TP tube in place but if it comes out Brody will have to go about a week without feeds (just IV nutrition) to let it heal. I'm praying that doesn't happen. We just started to get on a nice upward trend with his weight and I would hate to see those numbers slide backwards.
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| 5-8-12 |
The nephrologist has been so pleased with his lab work and thinks that he will actually be able to go several more weeks without dialysis, so she decided we need to take out the dialysis catheter! They will remove it while he is in surgery tomorrow. Dr. Jernigan said it is too risky to keep the catheter in and not use it. This is amazing and scary all at the same time. I'm truly amazed that he has gone 2 whole weeks without needing dialysis and probably going to go several more weeks without it. I'm scared that I'm going to wake up one day and BAM! back to 16 hours of dialysis with a puffy little baby that's having difficulty breathing. I'm scared they're going to take out the catheter and just a few days later decide to put it back in. I'm trying not to think about any of that though... Just thankful his kidney is working as well as it is...Brody truly is a little miracle.
...There is so much more I want to write about...I've been sitting here staring at my computer for over an hour trying to figure out what else to write. But I'm tired. I almost fell asleep driving in bumper-to-bumper traffic on I-285 during a thunderstorm today. (shh...don't tell my mom!) So I think I'll save those thoughts for another post and go to bed now. But first, here's the weekly run down:
Monday (4/30):
-Weight: 2.95kg
-No PD. BUN still ok and Creatinine starting to stabilize...it is the same as yesterday.
-Potassium is high. Dr. Warshaw ordered K to be checked venously and not by heel pricks anymore (for more accuracy). Kayexalate ordered to lower potassium. At 4pm they rechecked K and it was fine. No need for Kayexalate yet.
-MCT oil increased to 3ml.
-Took 12ml of milk by bottle and then spit up almost immediately afterwards.
Tuesday (5/1):
-Weight: 2.97kg
-Labs good. BUN & Creatinine up slightly.
-Withholding Beneprotein b/c it has K in it.
-Took 6ml of milk from bottle.
-Spoke to discharging caseworker about starting to get things together to go home!
Wednesday (5/2):
-Weight: 3.005kg.
-Sodium low, Potassium high. EBM & formula to be decanted with Kayexalate. Creatinine the same, BUN good.
-GI doctor came on board to try to figure out what's going on with feeding.
-CVL Picc line removed (permanent cuff under skin).
-Blood is acidic. Given Bicitra as a buffer.
Thursday (5/3):
-Weight: 3.06kg
-Ordered hearing screen.
-Upper GI test at 1:30pm
-Potassium good (went from 6.1 to 4.8) after decanting milk.
-Creatinine the same, BUN up slightly. Still anemic. Dr. Warshaw increased EPO dose.
-Learned how to use home apnea monitor and food pump.
Friday (5/4):
-Weight: 3.05kg
-Upper GI test showed Brody might have Pyloric Stenosis. Confirmed by Ultrasound. Spoke to surgeon, will not do surgery right now. Re-check on Tuesday.
-Gave Brody a bath for the first time (our first time, not his).
-Learned how to place a NG tube
-Watched PURPLE Crying video
Saturday (5/5):
-Weight: 3.13kg
-Phosphorus is high. Adding Calcium Carbonate to milk to bind to phosphorus and keep him from absorbing it.
-Potassium normal at 4.3 (still decanting milk)
-Learned how to fortify and decant milk.
Sunday (5/6):
-8 weeks old today!
-Weight: 3.21kg (7 lbs, 2 oz)
-No labs today (to be ordered every other day from now on instead of every day)
Monday (5/7):
-Weight: 3.27kg
-Potassium normal. Phosphorus normal. Sodium low.
-Creatinine same as Saturday and BUN down a little (great news!)
-I gave Brody his EPO shot, canola oil (switched to this from MCT oil), and clipped his nails for the first time.
-Dr. Jernigan is really impressed with his labs and wants to take out PD catheter.
-Klonopin weaned to just once/day.
-Fussy at night.
Tuesday (5/8):
-Weight: 3.3kg
-No labs today
-Ultrasound showed Pylorus is significantly larger than last Thursday Scheduled surgery for tomorrow. Surgeon will also remove PD catheter.
-Off feeds and back on IV nutrition.
-Increased Klonopin back to twice/day but very small dose.
-Medications for home were delivered to NICU and checked by pharmacy.
-Spoke to nutritionist about going home.
