The problem is "they" don't know what they know and what they don't know...

***Before I start this post, I MUST clarify. THIS is MY opinion only and is not based on anything other than MY experiences through raising a chronically ill child and our emergency room/hospital vists. This is not a testament to ALL doctors, just the ones I have personally had experience with and have "generalized" here. If you don't agree with me or don't like what I am posting, please don't make rude comments. Feel free to share your opinion in a respectful and tactful way. Comments are approved by the author of the post.***

Ok, on with the post...and I am sorry it is a little longer than I had anticipated, but I wanted to include all the details...


As you all know, The Superhero had to go to the ER 2x last weekend. Both times were diabetes related. Vomiting. Ketones. High/low blood sugar. Dehydration. Each experience in the ER was completely different.

Saturday when we went, we were taken back immediately.

IV was started fairly quickly, especially after he puked all over the place. Zofran was given to clear up the nausea and vomiting.

They called HIS endo (even though she is not associated with the hospital anymore).

They let ME manage his diabetes.

Things were GREAT.

I mean, as great as they could be when in the ER with a puking diabetic.

When his BG started to come down more than I liked, I asked for a glucose drip, they got it approved and started NO PROBLEM. BG came up, insulin was given via pump, and ketones went DOWN.

All was good.

He started eating and we all felt comfortable with him coming home (including the staff there).

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Then on Sunday when he started throwing up AGAIN, this time with lower blood sugar readings, we took him back in. NOTHING seemed to be absorbing in his tummy and we could NOT keep his BG up enough to get rid of the ketones.

So, back to the ER we went, knowing we would be admitted this time around.

We were taken back right away, even with a waiting room full of sick kids. I am still always amazed how quickly a vomiting, ketone filled, Diabetic gets whisked back to the ER rooms. They definitely know to take THAT seriously.

They came in and got the IV started fairly quickly again. The Superhero's BG was starting to trend downward. I asked the nurse if we could get a glucose/dextrose drip going to get his BG up, since he was not tolerating nor absorbing anything through his stomach. (BG now below 100)

The resident came in and introduced herself to me. She explained that they would call his doctor once the blood work came back and would not start a glucose IV until then. I mentioned to her that his BG was dropping and that I needed them to start the glucose ASAP. She explained that it was not "protocol" to do that. I asked her what her plan was then to keep his BG up, or what they were going to do if he passed out or had a seizure. (yes, I actually asked this) She said they wouldn't let that happen. I told her that if she wasn't going to call HIS endo immediately, I would call her myself and have her call them. I knew she would want to know we were back in the ER and his BG was dropping. She then reluctantly took the phone number from me and went out to call.

I hated the vibe from this resident. She seemed very defensive when I was explaining what I thought needed to be done. And I really hated hearing how "protocol" was something different than what I KNEW needed to be done.I was as respectful as I could be, but my child's life was WAY more important than THIS resident's feelings.

After she left the room, her supervising physician came in. He was SO nice and I definitely got a different vibe from him.He said the resident was on the phone with our endo and would be back in after that conversation. He then listened to my concerns and I explained that The Superhero's BG was dropping even more and was now in the upper 80's.

A few minutes later my cell phone started to ring, it was not a number I recognized, but it was local so I figured it must be someone I knew. I answered. It was OUR awesome Endo. I just love her so much. She was calling to tell me about HER conversation with the resident.

Apparently the resident called the endo and without telling the endo what I had asked for, Dr. D told the resident the EXACT same thing I had. He needed glucose, ASAP. We needed to get his BG up so we could bolus insulin so we could get ketones down. Dr. D told me that the resident was VERY defensive and did NOT want to do that. Dr. D had to say something like "I am the endo, and this is my patient, THIS is what he needs, now..."

As I was talking with Dr. D on my cell phone, the nurse walked in with the back of glucose/saline and the resident came in behind her to explain. She saw I was on the phone and came back after I got off the phone. Dr. D explained that they would keep The Superhero for at least 24 hours. I told her I expected that, and we  were ok with it. We needed to make sure he could hold food/liquid down again before going home.

Then the resident came back in. She told me she had spoken to Dr. D and that they would wait to start the glucose until the bolus of regular saline bolus was completed.

Uh, NO.

I told her that wasn't happening.

His BG was now in the 80's and he NEEDED it started NOW. She did not seem thrilled, but said "ok". And the nurses hooked up the glucose. BG came up slowly (after dropping into the 70's) and leveled out in a much safer range.

That was the last we saw of the resident, this round anyway.

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And now for MY theory.

The longer you are a doctor, the more humble and knowledgeable you become.

Now, the knowledgeable part should be a no brainer, it is the actual knowledge that is gained that is what is part of my theory.

The longer someone practices medicine, the more they realize what they know and what they don't know.

And those who are NEW to practicing medicine (ie: RESIDENTS), don't know what they don't know until they are HUMBLED by a doctor/patient who knows more.

Those who have been practicing longer SHOULD realize that SOMETIMES the PATIENT might actually know what they are talking about.

Especially when they are talking about a disease they LIVE 24/7/365. Especially when it has been 2 1/2 years since they were dx with the disease. Now, not everyone who has a chronic illness and lives it 24/7/365 is as knowledgeable as others.

BUT, I think the doctors can "read" a patient to judge how much they might actually know.

If someone walks in saying they have no idea what their kid needs, he is vomiting and has ketones, but that is all they tell you, I would expect the doctors to know more.

If a patient comes in telling you they need IV fluids with glucose to get the blood sugar up, so insulin can be given, so we can get rid of the ketones, I would bet THAT person knows a little more about Diabetes.

Just sayin...


And here is a link to an article that seems to agree with this theory. (Med School Grads May Not Be Ready for Primary Care; Diabetes is mentioned)


*Disclaimer: I am a mom of a T1 Diabetic child. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*

Amazing. Brave. Strong.

These are just some of the words I would use to describe The Superhero. (along with stubborn, independent, and irritating)

He amazes me everyday with everything he goes through!

When round two of the tummy bug visited him in the middle of the night on Saturday the 6th we (The Daddy and I) were determined to do everything we could to avoid the ER/Hospital. We gave him the anti-nausea meds, lots of fluids, and insulin to keep the ketones down.

He seemed to be doing ok. He tends to run low when he has a tummy bug, so we did a decreased temp basal for several days (at least -40%). We were doing ok keeping him between 80 and 150 or so. He only threw up the one time on that Saturday.

Then I posted about him having LOWS that were not fun, in the middle of his nap. We had a REALLY rough day that day. He threw up again that night at my mom's, but was still acting fine.

Then Thursday came and he was still running low. I was doing ok trying to keep him up, until he threw up AGAIN on my floor! Checked BG, low, checked ketones, 3.5 blood ketones (HIGH)! We did our best to get him to eat/drink and get his BG up so we could give him insulin, to get rid of the ketones.

Being 3 years old, and VERY independent (wonder where he gets that from!), he REFUSED to eat or drink anything. We finally made the decision that we knew was coming. It was time to go to the ER. We needed fluids. We needed dextrose to get his BG up.

All day I debated this decision. I felt like I was failing or giving up. But, it was time. We tried everything we knew how and there was just no convincing a 3 year old that he HAS to eat/drink.



We left The Princess with my parents (on their anniversary) and took The Superhero to the ER. He was acting fine. He kept asking where his "hosi-hole" was. We got there and were taken back immediately. They were worried about the ketones and low blood sugar combination, as we were.


They decided right away that they needed to get an IV going. The Child Life specialist came in to try to "distract" him during the IV/blood draw. The nurse came in and got started. They used this neat pen thing to numb his hand. She attempted the IV and ended up blowing the vein. The Superhero cried, A LOT.

Nurse #2 called in. She evaluated The Superhero's hands and arms to try to find the best vein to go for. She was determined to not put him through it more than one more time. She had the lights turned off and used the little light to see through his hand. (you know, the one they use to look in your mouth, nose, throat, etc)

She took a long time determining which one she wanted to go for. She marked the vein with a pen and the spot she wanted to numb as well. She got the other nurse ready. With the lights still turned OFF she did the IV and blood draw shining the light through his hand. Yes, the lights were still OFF. She did the whole thing in the DARK. I was/ am super impressed!

She got it in and we got the fluids started. They gave him some zofran in the IV as well as a dextrose drip. The ER docs were in and out. We saw several different docs and one resident. They all were a lot better about us handling his Diabetes this time around. After our last visit, we were very happy to see that things had changed.

I was impressed that the resident admitted she did not know much about diabetes and she was asking A LOT of questions trying to learn. Yep, she was actually learning from us, the parents! She understood that we knew more about it all than she did!

We ended up getting admitted. Once that decision was made, I went home so The Princess could sleep in her bed. The Daddy and The Superhero ended up sleeping in the ER all night because there were no rooms upstairs. I took The Princess to her doctor appointment the next morning (follow up for ears, and more antibiotics because the infection was not gone). Then we switched off. The Daddy brought The Princess home and my mom and I stayed all day with The Superhero.

We finally got moved to a room around 2pm. We met the pediatrician who would be seeing The Superhero while we were at the hospital. I had a good feeling about him from the beginning. He told me that he was going along with what the endo decides and that the endo would be calling the shots and he would be ok with sending us home when the endo thought it was ok.

Such a HUGE difference from the last time we were there! They actually were listening to us and letting us check his BG when WE wanted. We just wrote things down on the white board in the room and they would come copy it down occasionally. We were allowed to let him eat whatever, whenever he wanted.

He did great all day Friday. He nibbled on different foods throughout the day and was keeping it all down. His BG was finally up and his ketones were down. We decided to stay one more night just to make sure he was really going to be ok. We did not want to have to go back in a few days if we had more issues.

Then the next morning I get a call from The Daddy letting me know that he threw up AGAIN. We decided this was because the nurses decided to come in for a blood draw at 5 AM and the flushing of the IV woke The Superhero up. Then because he was awake he wanted to eat. The cafeteria does not open until 7, so he ate fruit snacks (or froop snacks as The Superhero would say) and Diet coke. This was all they had in the room that he would eat. This combination on an empty stomach does not sound appealing. I am sure this was why he threw up.

So when I got down there, after breaking down and balling my eyes out because I thought for sure we would be staying overnight again, I ordered 3 bananas from the cafeteria to keep in the room. He actually did very well and ate bananas, toast, pancakes, etc and was acting completely normal.

Ketones were finally gone. BG was staying up. We were given the ok to take him home. I let him finish his nap and then we were off! It was so nice to get to bring him home.

Since coming home, we have had to increase all of his basals and are working on that darn breakfast ratio again. It seems that now that he is feeling better he is having an increased need for insulin.

He has found a new favorite food, French Toast. He requests is for breakfast and dinner every day. And I let him have it. As long as he eats, I am ok. At some point I will quit giving in to the request, at least at dinner time.

The Superhero amazes me every day with everything he goes through. He gets at least 4 finger pokes a day (thanks to Dexie), site changes every 3 days, Dexie changes every 7 days (or more if they fail). And all this with no numbing cream (which I hear a lot about from other D families), no screaming, no crying. He actually runs around the house screaming "Yeah! Site change!" and "That's not too bad!". I don't know how he does it, but he is so amazing.

I hate that he has to have this disease, but I am so thankful that he can take it all in stride. It is no big deal to him.


Thank you to all who sent messages to me on FB and who prayed for us. I am so happy to have my amazing, brave, strong little boy back! (and the irritating, stubborn, independent one too)


Here is a pic from the hospital...

He CRASHED as soon as I got him to lay on me. It was literally in an instant.

Ketones and IV Fluids, Part 2...

It was 2:30am by the time they left. I tried to go back to sleep. I knew he was in good hands with his Daddy and Pompa, but I still felt SO guilty. His mommy should be there for him.


I kept texting with my dad to see how things were going, instead of sleeping. BG was going up and ketones were going up. The ER docs had no clue what to do with regards to the Diabetes.


They also did not have a blood ketone meter. I am SO thankful I sent ours with them. BG had gone up to 360 and ketones were 2.1. The ER docs did nothing for the BG. The Daddy bolused The Superhero for the BG to get him to come down. The nurses were very upset that he did this without telling them.


They did get and IV with fluids started. They took some blood to run some tests. They were testing to see how much, if any, acid was in his blood. This would determine if we would have to stay for 24 hours or if he could go home soon.


The blood came back and it was determined that he was already in mild DKA because he did in fact have acid in his blood. They would keep him for 24 hours.


I was anxiously waiting at home for The Princess to wake up so I could nurse her and then head to the hospital. I ended up waking her up to nurse her, since she actually decided to sleep longer than normal. I fed her and then my mom took over sitting here with her so I could go see my little man.



I got to the hospital and went into his room. He was lying in his bed with his Pompa (my dad) watching a movie. He looked at me and did not make a sound. All I saw were tears coming out of my poor little man’s eyes. (Just picturing him with the tears, is bringing tears to my eyes all over again!) I could tell he was happy to see me and sad for all they had to put him through already. He showed me his IV on his hand. I laid in bed with him for a while.


Over the next several hours, we had the endo on call and the pediatrician from the hospital come in to visit. I asked what we needed to do to get him home. They wanted him to be able to hold down food and get rid of the ketones. I verified that if he did this before 24 hours was up that we would be able to go home. They assured me that we could go home once those two things happened.



He ate breakfast and kept it down. Still had small ketones, so we continued watching movies to pass the time until they checked again.


He ate lunch and kept it down. Ketones were gone! Woo Hoo! We get to go home, or so we thought!



The endo was fine with us going home. The pediatrician at the hospital on the other hand was not. She wanted his BG to be back in range. He had been running higher all day. Any parent of a kid with Diabetes (or anyone with common sense) knows that little to no activity all day, fatty hospital foods, and the dreaded breakfast spike WILL cause BG to run higher. It did not matter what we did, though we were cautious of dosing amounts of insulin because he can be very sensitive. He was running high ALL day! No matter what we did. He was high.


Because of the higher BG’s, the pediatrician did not want us to bring him home until he was down into the 200’s again. She said she would think about it after he had dinner. I explained to the nurse (because she was the in between person, since the doc would not come talk to me herself) that if he eats dinner, he will be high from the hospital food, again, and we would be continuing the cycle.


After going back and forth for a couple of hours the endo on call convinced the pediatrician that we knew what we were doing and she agreed to send us home.


So, after all this, I have learned a few things…

1) If The Superhero has a fever and is appearing to come down with something, do NOT decrease his basals if he refuses to eat and BG is low.

2) Get him to eat ANYTHING to be able to give him insulin so ketones do not develop.

3) Get the prescription filled for the anti- nausea medicine.

4) Bring ketone meter to hospital, since they have no clue what one is. Urine ketones are not current/accurate.

5) Give your child insulin if his BG is above target in the hospital, despite the nurses freaking out.

6) Convince the pediatrician that YOU know more about Diabetes than she does.


And last but not least…

7) The Superhero thinks it is REALLY cool when Mommy catches his pee in a cup. :)



I REALLY hope we can avoid the hospital in the future, but am also pretty sure, this will be the first of many visits for The Superhero.

Ketones and IV Fluids, Part 1 (part 2 to come later this afternoon/evening)

Since I am in the process of catching up on some blogging, I decided it would be good to document our most recent trip to the ER/hospital for The Superhero.

On October 29, 2009 The Superhero woke up from his nap with a fever, 101.5 (or around there).

I assumed it was similar to the one The Princess had had a few days prior. She had the fever one afternoon and it was gone and she was back to normal by the next morning.

He was definitely acting sick. He spent the afternoon lying on the couch. He did eat his snack, but then refused to eat any dinner. His blood sugar was ok at that time, so we let him skip dinner.

He fell asleep on the couch around 6:00pm. We tested his BG and he was starting to drop, somewhere around 100 at that time. We did a temp basal decrease on his pump for a couple of hours to get his BG up to a more comfortable sleeping number.

Re-check a bit later and his BG was coming up some. We checked his ketones with the blood ketone meter and he had small ketones at that time. We figure this was due to the temp basal decrease and not eating dinner combo. He has barely had any insulin all afternoon/evening.

I went to bed and told my husband to check him in a bit and keep an eye on the ketones. Well, The Superhero woke up around 10:30 not feeling well. He stayed on the couch with Daddy for a bit. His blood sugar was at or below his range, so no insulin was given. Ketones were climbing up to the moderate-high range. My husband was not sure how high on the blood meter was too high, so he waited to wake me up.

Around 11:30pm I wake up to the sound of The Superhero throwing up all over the living room floor. I find out that his ketones were now in the large category and his BG was in range. He was not keeping anything down. We kept trying to get him to drink ANYTHING we could find. He was not interested.

We called the endo on call, just to make sure we were doing everything we could/ should do. At that time, we were. Pushing fluids. He even ate a cracker or two. She said if he threw up again to bring him into the ER for an IV. We REALLY wanted to attempt to get through this at home on our own.

We continued to push fluids. We checked his BG and ketone levels A LOT! He continued to have ketones in the Very LARGE category. (I think they got as high as 1.5 at home).

He started to doze off on the couch again. Around 2:00am or so, he woke up and said he did not feel good. Then he threw up again.

That was it; we knew we had to take him in for fluids. I called my dad to see if he could go with The Superhero and my husband since I am still nursing and The Princess would be up anytime to eat.

Off to the ER they went!