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| 4-29-12 |
Last Tuesday, Dr. Warshaw decided that Brody's lab work looked so wonderful that he could probably take a break from the dialysis for a while. The pyelostomy was putting out a good bit of fluid and Dr. Warshaw was interested to see how fast his BUN and Creatinine levels would increase. Brody's kidney is extremely abnormal so he will have to go back on dialysis eventually but, best case scenario, Brody could go a couple months with out dialysis. ...Most likely just a few days to weeks. Since they stopped the dialysis, his BUN has increased about one point every day and his Creatinine has increased about a tenth of a point everyday. They are currently still within normal range but there is a definite upward trend. And the fact that he's not retaining fluid is wonderful. Dr. Warshaw explained that everyone's kidneys mature a little bit in the early months of life and now that Brody's kidney is constantly draining and not retaining urine it is less stressed and therefore doing better than it was. He made sure to tell us that it will never function normally. ...Like I haven't heard that a thousand times.
The physical therapist came by on Tuesday but the session seemed to stress Brody out so she kept it short and sweet. The PT explained to me that signs of stress for an infant can be hiccups, multiple sneezes, stretching out the arms or covering the face (Brody started hiccuping and spitting up when she was stretching his legs). She showed me things I could do with Brody to help him grow: tickle his feet one foot at a time (this will help him kick) and stroke the back of his neck while in the prone position (this will facilitate head control). She also helped me fill out a developmental plan:
At this point, our real concern is just trying to get Brody to gain weight. In order to go home he has to be big enough to be on the dialysis machine and to do that he has to be able to handle a fill volume of 100cc's. He has only gained 9 ounces since birth. At his current weight, the most he has been able to handle is 60cc's (he started at 40cc's). He's now getting 18ml/hr of fortified breast milk through his feeding tube. He is not too interested in a bottle. The first day he took a bottle, he did so well that the therapist put in orders to work with him only 3 days a week. Well, he's either been too sleepy (because of the meds), or just not interested at all so the therapist is now suppose to work with him 7 days a week. I say "suppose to" because I don't think she's come by everyday. I spoke to the Physician's Assistant about possibly weaning him off some of the meds so he's not too sleepy to eat so she cut the Klonopin dose in half although he's still really sleepy even with just 1/2 a dose. He really really needs to start gaining some weight...If only we could give him a cheeseburger! :)
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| Good bye incubator! Moved to a big boy bed on 4-25-12 |
He did have kind of a rough day on Thursday. Brody has reflux and has been spitting up (just mucus since he has a TP tube and milk is going directly into his intestines) and on Thursday his TP tube migrated out of his intestines and into his stomach. I was holding him and the nurse had just given him a dose of Sodium Chloride when he started to gag. I sat him up a little and he started vomiting. A lot. Thankfully the nurse was right there because this time it wasn't just mucus. Because he was now throwing up milk, we knew the TP tube was out of place. The nurse pulled the old tube out and put a new tube in...it took 3 tries before she got the new TP tube in the right spot (X-ray verified that it was where it was suppose to be). I was pretty impressed that even though he was SCREAMING his O2 saturation never got too low. ...By Friday morning the TP tube was out of place again. They stopped his feeds (which he really can't afford to go any significant amount of time without his feeds) and took him down to fluoroscopy to make sure it was in far enough. They also used a weighted tube to make sure it stays in place. He's still spitting up every now and then but instead of Xantac they are now giving him Prevacid. I think his reflux might be a side effect of the Klonopin they are giving him for stress. This all started the same day they started the Klonopin. I asked the nurse about it and she said it is possible but apparently he "really needs the Klonopin". I'm hoping and praying they take him off this medicine soon.
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| Waiting on a new TP tube. Don't laugh at my double diaper! :) |
Even though the doctors cannot give us any indication as to when Brody will be able to come home, Adam and I went ahead and took the CPR class and car seat class which are required for discharge. The car seat class was actually very informative. Apparently 98% of people do not have their car seat installed correctly. We had to bring our car seat in and install it in front of the instructor which she said we did just right. She showed us pictures of how some people install their car seats and I was flabbergasted at the ridiculousness that I saw. Someone actually used an infant swing as a car seat and thought it was acceptable. I would have laughed but it was just too sad to think that a parent thought that was safe. Before Brody can go home he will have to pass a car seat test too. He'll have to be strapped into the car seat and monitored for an hour and a half to make sure his heart rate and breathing are ok. There are still a dozen things we have to learn and do before we can take Brody home (as well as, of course, Brody being physically able to go home) but we got a few things checked off the list.
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| 4-28-12 Loves his frog |
Saturday (4/21):
-Weight: 3.08kg
-Labs good and PD the same (6 passes of 60cc's)
-Morphine discontinued and now on scheduled doses of Klonopin (3x/day) for anxiety (still on Ativan as needed)
-On clear IV fluids only, just to keep central line open.
-O2 still on 2 liters
-Adam gave him one 14ml bottle of EBM fortified with PM 60/40
Sunday (4/22):
-6 weeks old today
-Weight: 3.085
-Labs good and PD the same
-Didn't seem interested in the bottle. Tried paci dipped in milk to get used to taste.
-Dr. Batisky impressed with pyelostomy output.
Monday (4/23):
-Weight: 3.05kg
-Starting on Calcium supplement
-PD the same
-O2 weaned to 1.5 liters
-Feeds increased to 18ml/hr and adding beneprotein to EBM. (PM 60/40 with every feeding; PM 60/40 and beneprotein 2x/day)
-Electrolytes are slightly off so adjusting fluids
-No bottle today. Speech therapist came over to work with him but he was too fussy.
Tuesday (4/24):
-Weight: 3.12kg (6 lbs, 14 oz).
-Klonopin seems to be working-didn't need much Ativan.
-Started spitting up. Prevacid ordered
-Labs look good. No PD.
-Short PT session and developmental plan in place.
-Weaned to 1 liter.
-Wouldn't take bottle...Too sleepy to eat.
Wednesday (4/25):
-Weight 2.97kg
-Bumped back up to 2 liters (trouble breathing because of reflux) but then by mid-day down to 1.5 liters.
-Moved to a big boy bed and spent some time in the MamaRoo and liked it.
-Labs good and no PD. Creatinine up slightly but still within range. Hematocrit low (he's looking rather pale) but no need for a transfusion yet.
-Too sleepy to eat again. Klonopin dose to be cut in half. (took a little milk out of a bottle for the night nurse).
Thursday (4/26):
-Weight: 3.00kg
-Labs good, no PD
-Weaned to 1 liter cannula
-Given Sodium Chloride, threw it up, then given another dose.
-TP tube came out of place. Replaced TP tube.
Friday (4/27):
-Weight: 2.89kg
-At 2am still throwing up and extremely fussy. Abdominal Xray showed a lot of air in his belly. Replaced TP tube at 10am using fluoroscopy.
-Urology looked at Pyelostomy site. Its a little hard but they were able to flush it so it's not closed. Did ultrasound at 11am and everything looks fine.
-Resting comfortably when Adam and I were there.
-labs good, no PD.
Saturday (4/28):
-Weight: 2.88kg
-labs good (BUN & Creatinine are creeping up a little but still within range.) No PD again.
-Stopped Klonopin at night but was really fussy.
-Not interested in bottle whatsoever.
Sunday (4/29):
-7 weeks old today
-Weight: 2.92kg (6 lbs 7 oz)
-OFF OXYGEN!!
-Labs good (BUN & Creatinine still going up slowly). No PD.
-Back on Klonopin.
-Surgeon paged to come remove the PICC line but will do that tomorrow.
-Dr. Warshaw wants to increase his caloric intake so they are going to add more protein to the milk (this is along with the PM 60/40, Beneprotein, and MCT oil).
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