ketogenic diet day 6

September 19, 2015

Saturday

Aaron is definitly feeling better I feel so badtht I could not get them to listen to me and he got so sick. The nurses were great and were relaying my messages to the dietician. It was her that would not listen. I hope she learned from this and when she is dealing with another medically comlex child listens to the parent.

His hear rate and temp are returning to normal and his c02 was up to 15 and then down to 14 in the afternoon. He received 2 doses of sodium bicarbonate and his levels will be checked in the morning. I am so thankful thta Dr P is taking care of Aaron now. He knows Aaron and listens to me. in the afternoon I noticed that Aaron was "off" again. I told him tht I thought his sodium level was high. He ordered the blood tests and I was right. He increased his free water back to where it was when we started the diet.

His blood sugars have been great and his ketones are large. We have not seen any seizure activity today. If his levels are in the normal range tomorrow he might be discharged.

ketogenic diet day 5

September 18, 2015

Friday

Aaron is really sick. I wiah they would have listened to me the other day. I kept telling them he needed more water but the dietician would not listed. One of the nurses came back and siad "well its not that she doesnt believe you"...What?!? not believe me?? I know Aaorn and i knew something was off. They called in his Intensivist Dr P. He did some labs. He knew that he was running a temp and was tachycardic. He was dehydrated and his co2 was VERY low (at 9). He oredered a bolus of 250ml and sodium bicarbonate. He will do labs again in the morning.

Aaron is having a lot of seizure activity. We counted over 25 just this evening. he is starting to feel better after the water and sodium bicarbonate. The dietician is still not understanding tht if she would have listened to me earlier he wouldnt have been so sick. So frustrating when someone thinks they know everything about your child beacause they are in charge of the diet.

The top pic is Aaron when I was telling them tht he wasn't feeling well and needed more water. This was taken after his labs that showed he was severly dehydrated and his co2 was only 9. The dietician assured me that he was only getting used to the diet.

The bottom is later in the evening after he got the bolus of water and the sodium bicarbonate. His temp was still elevated as was his heart rate, but he was starting to feel better.

She should have listened tome.. Even after all that she still was not understanding that a lot of this could have been prevented. I tried to expalin that Aaron is a complex child and that I knew what I was talking about. She just kept telling me that he was doing fine on the doet. I tried to tell her I was not questioning the diet or her expertise in the diet, but tht I know Aaron and I knew something wasnt right. She didn't really care and dismissed me. Very frustrating.

ketogenic day 4

September 17, 2015

Thursday

Well I was right. Aaron's heart rate is up to 120-130. which is double of his normal rate. (he runs low)
His temp is also up to 99.6 which usually runs 94-96 degrees. I told the nurses that these are not normal for him. His dietician told me that it is just him getting used to the diet. SHe is really starting to frustrate me because she is not listening to me.

His GTube site looks worse so the nurse had Dr S (surgeon) Np coma and see Aaron. She said it was infected and wanted to give him a antibiotc. They decided aginst it because of the high carb count. Instaed they gave him some new gtube pads. We scheduled an appointent for Oct 2 so Dr S can change his button.

He is still off and still not urinating. nobody is listening to me so I call ed Dr R (his Endo) and talked to her. She called and talked to the nurses. She ordered some labs and changed his dose of DDAVP. Hopefully this will work and we can get discharged. This was supposed to be  3 day inpatient stay.

The good news is that his blood sugrs have stayed below 80 annd his ketones are large!!

Ketogenic Diet Day 3

September 2015

Wednesday

Today Aaron is getting all Ketocal. From 8am on his blood sugars have been below 80!! He still isn't urinating so he had a bladder scan. It showed that it was very full. he eventually went 580cc.

I told the nurses tht Aaron is "off" today. I can't tell exactly what os wron, just that he is a little off. I am also cincerned with his Gtube site. It is a little red today. We are going to put some antibiotic oitmnet on it and see if that helps.

His Dietician decreased his free water from 150 cc to 120 cc. I told her I think that is a mistake, but she is not one to really listen. She is just treating the diet and not Aaron as a whole. I am hoping that she is right, but my gut tells me it's a huge mistake.

Ketogenic Diet Day 2

September 2015

Tuesday

Today aron is getting 2/3 keto cal and the rest pediasure. His blood sugars have been up and down and this afternoon his ketones were small!! He is making progress.

He hasnt urinated today which is reall odd since he has Diabetes insipidus. Hopefully it is just a one time thing and he will be back on schedule tomorrow.

All of the nurses are so nice and it is so different than are usual hospital. The nurses here give him a bath everyday and change his bedding. At our usual hospital they give me the stuff to change his bed and give him a bath. I still do his meds because they are so confusing but I dont mind that way I know they are done right.

Aaron is in a good mood and he loves all of his nurses.

Ketogenic diet

September 2015

Monday
Aaron was admitted to the peds floor for the implementation of the Ketogenic diet. I am hoping and praying that this works. I hate seeing him have seizures and knowing there is nothing I can do to make it better.

Today he is getting 1/3 keto cal and the rest pediasure. So far he has tolerated the new diet. No vomitting or any adverse reactions. His blood sugars are in the 90's and so far his keto strips have been negative.

the purpose of this diet is to put him in ketosis. We want his blood sugar to be between 50-80 and his ketones to be moderate to high. He is still having seizures today.

birthday party

September 2015

Nick had his birthday party at Ultra zone again this year. He LOVES that place. He picked Jurassic park as his theme this year. He and his friends had such a good time. I love their conversations. It doesnt get any better than seeing the pure excitement of the boys when they are called back to play. I am so lucky to be a mom.