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.

Nick's 10th birthday

September 12, 2015

HAPPY BIRTHDAY NICHOLAS!
I can't believe that my baby is 10. I am so proud of the young man he is becoming. He is such a sweet little boy and has the best sense of humor. He is a great big brother and Aaron LOVES him. He cares for others and has such knowledge of faith and the Bible way beyond his years. I love all of his questions and enjoy watching him research each of his passions. I love this boy and am so proud to be his mom.

emergency surgery

September 2015

Nicholas woke up this morning saying he wasn't feeling well. He spit up a little blood and I gave him a popsicle. He said it stopped and he went to sleep. Taevon's PT was here and he was working in the gait trainer. Nicholas came downstairs and said he was spitting up blood again. I gave him another popsicle and said I would call the nurse in a few minutes. The PT left about 5 minutes later. I was on the phone with the nurse when Nicholas said he threw up. I went to the bathroom and it was covered in blood. The sink, counter, shower and floor was completely covered in blood. The nurse asked how much and when I told her it was all over she calmly said "you need to put him in the car and get here now..do you understand what I am saying?" We left right then. By the time we got out to Lutheran he was feeling dizzy and just wanted to sleep. They took him right back to surgery. The dr came out and said "wow..he really had a pumper on the left side" He said he had thrown up more blood in the OR and they cleaned the rest of the blood out of his stomach. He was in recovery for awhile because he had lost so much blood. He looked so pale. He slept the rest of the day and night when we got home. He is the sweetest tlittle boy. He apologized for making the bathroom "look like a crime scene" I love this boy.

tonsils and adenoids

September 2015

Nicholas had his tonsils and adenoids removed today. He was so nervous and I thought I was going to have problems when they cam to take him back to surgery. He did so well and walked back with the nurse to the OR. He did great and only needed a little oxygen int he recovery room. He got home and slept on and off for the rest of the day. He did great over the weekend and was able to eat and drink with no problems.

kidneys, tonsils and seizures

August 2015

We have  had lots of Dr appointments in the last 2 weeks. Nicholas went to his Allergist for his yearly appointment before school. He has outgrown the EPI JR pen and now has a regular one. Of course this is after I just bought one because the other expired. We were then referred to the ENT about his tonsils. That appoinment ended with a surgery date of August 21 for the removal of his tonsils and adenoids.

Taevon went to his  2nd check up for his blood pressure. Since his blood pressure was still elevated he was given an appoitment for a renal ultrasound. While we were getting that done the tech commented how much better the right one looked. So we wait for the results...

Keagan was referred to the Pulmonologist by his Neurologist. He did some blood work and we are waiting on the results of those tests. He went to Riley to see his Neuro and she increased his dose of Topamax, so hopefully we will see the benefit of that before school starts next week.

Aaron saw his new GI dr and we were given a prescription for Silver Nitrate to help with his granulation.  We had planned on going into the hospital for a week on the 24th but had to reschedule for Nick's surgery. I am still waiting to hear back from them with the new date. We are implementing the Ketogenic Diet in hopes of getting his seizures under control. Becuase he has so many other issues we are very limited in the meds he is able to use for his seizures.  We are not even sure if the diet is going to work for him. His dietician at the hospital said she has never doen the diet for a kid with Diabetes Insipidus and she has concerns with his Hydrocortisone interferring with getting him into ketoacidosis. We are just praying about it and know God is in control.

We have a little break of about a week before the appointments start up again, Nicholas has labs for his ENT, Taevon has Botox and an appointment with Dr C and his GI Dr. Aaron as an appointment with his Neuro. We are also able to squeeze in an appointment with M for Tae for his new carseat and Tumbleforms chair!! Can't wait to get those for him.

We are so busy but I am so thankful for this group of incredible Drs taking care of my boys. They are the best!! I am also extremely lucky that even with all of the boys needs we are only going to Riley for one dr!!

first day of school

August 2015


I can't believe the summer is over and the boys started school today.

Nicholas is int he 4th grade and Keagan is in the 1st grade. time is going way too fast. They were excited to get back to school and see all of their friends.

end of summer

August 2015

This summer went so fast. I can;t believe the boys will start school in a few days. We went to the park and had a great time today.

fair 2015

July 2015

We took the boys to the AC Fair. We had so much fun. It was so nice spending the time with the boys while Tae and Aaron spent time with grandma and grandpa.

The boys each played a carnival game and won a stuffed animal. They rode the Monster Truck twice, (NIck's favorite)  and we watched the rick shaw races. We saw the hot air ballons lift off and then glow later in the evening (my favorite) Keag's favorite was when they got into the helicopter from Lutheran. Seeing them in their flight suits reminded me of when Aaron was so sick and we took him to Dupont ER. They decided he needed to go to the Lutheran PICU and was taken by ambulance by the flight team.
 They ate ice cream and we rode the tractor around the fairgrounds. It was so much fun. They are already talking about what they want to see next year.

festival fun

July 18, 2015

The boys really enjoyed the festival this year. They had so much fun with all of the different activites. They got to take helicopter rides, roll around in these huge balls. They bought laser guns and Keagan got to eat some festival food.
During the helicopter ride Keagan was so excited to see Science Central, and the skate park. Nicholas was so excited when he saw a x shaped pool and the rivers. They both got to sit in the front with the pilot and talk to him during the ride. After the ride Nicholas was talking about all the rides he now wants to ride at Disney. He said he can ride any high ride now because he has been up in a helicopter.

I am looking forward to all of the fun activites at the county fair and hoping we can get out as a family. (as long as the temp is ok for Aaron)