Hospital Hell

First I would like to point out that I am of sane mind and body.  Second I would like to point out that although I have only been a D-Mom for just days under a year…I’ve been doing this gig 24/7 for just days under that year and I’ll be damn if I’m going to go through what I went through this week again.  So if you are reading this and make it through to the end…comment and give me what you’ve got.  I know there are reasons for everything and the more perspectives I can get the better I’ll be in the future!

It all started with the FLU.  Yes, my father was the first victim.  Took him out in a blaze of glory, small indent in the bathroom wall and one toilet roll dispenser not so artfully removed from the wall…he lived through it, but it was ugly!  Next came my little Jack.  Projectile like all over my husband on Sunday.  Ellie and I were Monday night, I at midnight, she at 3am.  Thank goodness for my mother because I was in no condition to take care of Ellie.  Ellie’s numbers stayed steady all night thankfully, but she couldn’t keep an ounce of liquid in her to save herself so by noon the next day I was getting concerned.  The ketones were beginning to climb of course but the BG was staying freaky steady and her only problem was not keeping fluids in.  So I called the Endo and looked for some guidance.  He sent us to the pediatrician for a referral to the hospital for an IV drip of the fluids to keep her out of ketone hell.  This was all smooth as silk and I was feeling really confident about the whole process.  In my mind we would go into the hospital they would hook up the IV we would hydrate for 4 to 6 hours and the puking would subside in that amount of time (as it had for everyone else including myself so far) we would be back home and resting late that night. 

That’s a NEGATIVE!!!

Not only did it take almost 2 hours for an IV to hit my daughters vein, but events unfolded in a furry of uncomfortable, hostile, bullshit kind of way that I for one do not and probably will not experience again!  I’m going to save the actual details for a time when I literally have nothing to do (so ya never) only because the details get me too angry and I’ll feel like crap if I re-live it.  But I think if I throw out some specific statements you all can fill in the blanks and maybe someone will enlighten me, or I will provide some good proactive thoughts for your visit someday. 

1.  Ellie’s blood sugars stayed (literally) between 180 and 230 from midnight Tuesday until we entered the hospital at 2pm Tuesday afternoon.  This seems relevent to me.  She began to float slowly down to 97 by 5pm Tuesday night in the hospital. 

2.  I do not give more insulin to Ellie when she is at 97, this seems not only a little silly but really stupid to me.

3.  Yes, we have the Dexcom.  However, Dexcom is not magic and is not always really accurate.  This is why we still test by finger poke 6-10 times a day.  We do however trust the direction of the arrow on Dexcom.  When it says down she is going down.  When it says up she is going up.  When it shows straight across…well then you must wait for the next “event” to happen and make the arrow go up or down. That is the REALLY FUN SHIT ABOUT DIABETES!

4.  We do not give more insulin to Ellie when she is at 97.

5.  I do not have a specific regimen that I follow to manage Ellie’s diabetes.  I have specific I:C ratios, Basal settings and correction factors that I can offer.  But I do not have a specific thing I do when Ellie is at 236.  There are some factors and variables that must be discussed before “action” will be taken.  It is hard for me to explain what we do to manage Ellie’s BG…I NOW know that answer is not appropriate in a hospital…they want absolutes and sliding scales.  The particular staff I was dealing with had not ever seen a Dexcom CGM or an Omnipod pump.  This was an issue. 

6.  The hospital uses urine ketone strips to test for ketones.  I use a blood ketone tester.  They would not use my blood ketone test results as an indicator of ketone levels.  This is extremely upsetting and caused some problems from the get go. 

7.  I had to defend myself and my decision to not give Ellie more insulin when she was at 97.  I was asked by a doctor if “Ellie had a seizure before or something?”, I was also asked if “I understood that her body was burning her muscles when she has high ketones?”.  I do not need to be reminded of what Type 1 diabetes is doing and will continue to do to my daughter for the rest of her life, I also have NOT witnessed my daughter have a seizure…my actual goal believe it or not is to NOT SEE THAT HAPPEN IN THE FIRST PLACE!  That would be why we do not put more insulin in Ellie when she is at 97. 

10.  Ellie’s ketones were down by half within one hour of receiving saline by IV.  She was given anti-nausea medicine and began to keep small amounts of jello and a popsicle in. 

11.  Speaking of the popsicle.  It was ordered by the doctor to see how much she would come up with a popsicle.  When I said she will come up a hundred points and why are we ordering this?  I was ignored.  Hind-site, I think it was an attempt to bring her up so I would give her more insulin.  Only 2 days later do I know what the hell that’s about, but I’m still not impressed.

12.  Within 3 hours Ellie was no longer throwing ketones and was eating regular food and drinking.  However, the urine test was still showing ketones so I was still getting harassed by everyone about giving her insulin.  I explained that we would not be increasing anything and we do not correct before a meal unless she is over target…I also don’t bolus for a meal and then all willy nilly give her insulin right after a meal.  I already over bolused for the sandwich she had because the bread was big and foreign and I had to completely guess. And proof you better not trust anyone with the care of your diabetes management, when I asked the nurse to give me the carb count for the jelly, she gave me the serving size.  The jelly packet was 14.3g OF JELLY.  This is the same nurse who pulled at Ellie’s Dexcom sensor stuck to her butt trying to figure out what it was…thanks because it’s hard enough to get the little antenna in her and working correctly, pulling on it surely helps this process.

 13.  Ellie’s BG started rising at 3am Wednesday morning and I began a series of corrections.  I reported to the staff that I was correcting and felt it was probably a shortage on my part from the late snack she had a couple of hours before.  It became obvious by 5am this was not the case, I corrected and let them know again…I also let them know that the there were NO KETONES PRESENT and these high numbers can happen, we just need to keep giving insulin and it will come around.  By 6am I was at a loss she was still damn high and rising and I made the executive decision to go old school and just bolus 2 units straight.  No formula, no calculations, just a flat-out feels like a 2 unit situation.  I finally got a hold of my Endo a few minutes after I did that and explained my whole night and how upset I was.  He explained that fast acting insulin can sometimes be “too fast” or just effective enough to keep things just ok enough that ketones will increase without BG’s showing an issue.  I told him we have no ketones and I wanted to see what my 2 units do before we do anything more, that I’m getting close to stacking and I want to wait.  He was good with that.  At about 1 hour 45 minutes the nurses came in with their big ol’ meter and did a BG…30 points higher than my meter every time it came up with 330…mine was 274 and Dexcom was at 240 with an arrow down.  I told them she was going to be good, I talked to my Endo and give it a few she’ll be right down in range.  They didn’t.  They told the doctor on the floor who called my Endo and told him 330…they returned proudly announcing that my Endo ordered 2 units of long acting and something else.  I said no, that she’s going down and we won’t be adding anything to what is in her now.  They said, but your endo ordered it, I said, he doesn’t know where she is right now and you are more than welcome to have him call me directly if there is a problem. 

I was then told that we were cleared to leave and they would start the discharge process.  Knowing I had an appointment with my Endo the next day I told him that I needed him to explain to me what the hell happened and why my experience was the way it was.  That I was sure I had gone wrong somewhere in my communication but I was really sure that whole experience was not at all my doing or that I deserved to be treated this way. 

VINDICATED!

Before I could even tell him the details of my night he assured me that there were already two meetings regarding our experience at the hospital, with his staff and the other endo in his office.  He apologized and told me that not only would he personally deal with me if a similar situation (like flu) arose, but he would help me to ensure that I would have the prescriptions (like anti-nausea) and supplies to care for her at home. 

I told him that I understood that I was not a doctor, but I was really really sure that she was throwing up because of the flu, and felt that the doctors thought it was because of ketones…the ketones were gone quickly when she started the IV…this reinforced my belief that if we got her hydrated she would level out and all would be ok.  

I did learn however that they are noticing with the pumps that the insulin delivery is so smooth and efficient that people are showing normal BG numbers but still going into ketoacidosis.  So there are some different techniques to get rid of ketones with a pump. IF you have high blood sugars with ketones, yes you give insulin and fluids.  All the same.  But IF you have on target numbers and increasing ketones then you are actually going to be advised to eat carbs, bring your glucose up to 200 and treat accordingly with your fast acting insulin.  That is the extent of my knowledge.  This didn’t apply to my situation.  In our conversation he mentioned glucose in the urine…I told him they were testing for that and she never had glucose in the urine…which definately says SHE WAS DEHYDRATED AND NEEDED FLUIDS.  UGH!  Ok, I’m done.  I am actually over it, my Endo was very sweet as usual and let me know that I was not totally geeked and that I was on the correct path with Ellie. 

So all said and done.  I think I will work on a management protocol to give the hospital when we get there someday again.  Something that meets in the middle of information needed for the hospital to fill in the blanks on their paperwork and something that affords me latitude to still manage the way I see fit.  I will also request from my Endo and/or doctor anything that could keep us home to manage, if available and safe.  I didn’t really know I could get any anti nausea meds or that I should try it. 

Ellie is doing fine, but even as I sit here writing this out in the middle of the night I do have to say that her BG over the last 2 days has been just EVERYWHERE!  I assume she is recouping from her illness but we are talking low numbers that don’t budge for hours regardless of what we give her and highs that don’t respond for 3 or 4 hours instead of the usual 2 hours.  I hope this levels out soon…I’m about to pull my damn hair out!

Thanks to all of you (if any!) who made it to the end of this…I know it was long, but I appreciate all of you as usual.  I told Reyna that I totally sat in that hospital all night wishing I could call her and talk directly to her so I could get a Reyna pep talk regarding the battle I apparently waged against the system.    I love you all and spending time with all of you blogging is really what gave me the confidence to stand my ground in there.  You are all a wealth of knowledge and a huge support…but I guess we all know that right away when we share and read each others blogs!  ((hugs)) to all!

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14 Responses to Hospital Hell

  1. lora says:

    I have been hearing so many hospital horror stories lately. I don’t understand why nurses and such are not at least familiar with pumps and CGM’s… at least enough not to pull on them. What was that about?

    I am glad she is home now. You did good mama pancreas 🙂

  2. Amy says:

    Sarah, I have so many things I want to say to you right now. Oh, and to give you a great big D-Mama bear hug. Suckity-suck-suck could sum it up, though 😉

    Did you read about our stomach flu debacle last week?(http://three30three.blogspot.com/2011/01/2451-hours.html) Your story is a MAJOR reason I did not pack up my daughter at 4am to rush her off to the ER. I knew delays would occur and arguments would ensue resulting in more stress for everyone involved. Obviously something in the system is broken and needs to be fixed!

    I found it odd, too, that my Ellie’s blood sugars remained 160-180 during the puking process. Thank God, though, because I was giving insulin to lower the ketones. And, speaking of ketones . . . your hospital uses the pee strips??????? Wow.

    Now, don’t go pulling your pretty hair out about the wonky blood sugars following the flu. My Ellie had s-t-u-b-b-o-r-n lows and weird, out of nowhere highs for 5-6 days after her illness. I don’t know if this is normal, as this was our first battle of the pukes since diagnosis in September.

    Normal is as normal does?!?!?!?!?

    Anyway, you did an AWESOME job as both a mom and a pancreas. Be proud of how you stood tall and fought for what you knew in your heart was right for your daughter. And, I can’t imagine you were feeling very spry yourself given you were recovering from the same bag of germs. Hot bath, lots of bubbles and some candles should help the situation 😉

    ((hugs)) back at’ya, sweet girlie.

  3. Shannon says:

    WOW!! Your story makes me happy we havent ended up in the er yet with this virus we have… it is possiabale though so I will keep your story close at hand. I cant believe she pulled on the damn sensor!! WHAT THE HECK! I am proud of you for sticking to your guns and managing your childs illness yourself. I would have been walked all over I fear. BIg D mom hugs to you and a hope that it all goes back to “normal” soon

  4. Pam says:

    Thank you for sharing your story. I’m so sorry you had to go through what you did. We’ve only had one hospitalization since dx (flu), but we were so new to diabetes (6 weeks new) that I really didn’t know what to do and relied on the doctors. I do remember the ER docs not knowing what a blood ketone meter was, even though this was the same hospital that GAVE me mine. And i remember the look they gave me when I handed them three days of bg and ketone logs. It was that look of, “You know, you really don’t need to check her numbers that often.”. I know I was new to all this and didn’t know much, but I knew that a diabetic child who can’t keep ANYTHING down for 3 day requires some monitoring.

    Anyway, what I really wanted to say was thank you for sharing, because now I know that when this happens again I need to be a STRONG advocate for my child’s care. And to call my endo if needed.

    Hope everyone is on the mend. You did a great job taking care of your child. Lots of hugs!

  5. Penny says:

    Oh you did a fantastic job of taking care of your child, speaking up and letting them all know that you DO know what you are doing! Bravo to you and bravo for making it through it all. Thanks for posting, these are some good things for all of us to know and keep in mind, for any hospital stays.

  6. Wendy says:

    We’ve only had to head to the ER for vomiting once — it was a few years ago. After speaking with the endo, we were packing up to get in the car when she called back. These were her words:

    “YOU are in charge of diabetes. Don’t let them take that control away from you and call me immediately if they try.”

    Point taken.

    You did awesome. Managing D and caring for our children is a 24/7 job…advocating for them despite the situation can be grueling. But you totally rocked. VERY PROUD OF YOU!

  7. Hallie says:

    Ugh! No fun! That just plain sucks.

    We have only had 2 hospital experiences. Both due to ketones caused by D- not illness. Both times we went to the ER at Childrens. Were you at a Childrens Hospital? Here’s what I learned in my very limited experience…

    ER staff has no clue about D. One doc tried to explain sick day protocol to me… And she was wrong. Luckily she knew enough and was humble enough to call my endo and let ms talk to HER.

    It’s tough. They don’t get it and don’t know how much we KNOW about the disease and the disease in OUR CHILD.

    Last time we were there they were in contact with the endo on call – which was nice. I’d want that to happen again next time. Its unfortunate that an already crappy experience must be made worse by “red tape”. I think coming up with your own list of protocol is a great idea!

    So sorry you had to go thru this. Hoping that she settles down SOON!

  8. Jen says:

    Sarah – we have only been into the ER once for vomiting since dx and had a similar experience but we were too green to know to do anything different. It all worked out ok but I was really shocked at how little the nursing staff knew about taking care of a T1 diabetic. Our Endo was on the phone giving directions..thank goodness.

    After that incident I asked our Endo to prescribe zofran for us (an anti nausea drug) so we could have it at home to try and avoid the ER next time. I also have learned a lot from other bloggers about administering mini glucagon doses to keep blood sugar up during vomiting episodes and I am hoping that too will help keep us out of the ER if another stomach bug attacks again in the future!

    Big hugs..you did a terrific job taking charge in the hospital!

  9. Jules says:

    Oh, my, what a time you had. BUT you did so very, very well. Our children have a condition that is just not part of training and we have to stand firm if we can. It is so scary to be the expert when going to hospital should give one the chance to let others take control. However, when we left hospital after my little boy was diagnosed the nurse I got on best with said that within a year I would know more than her. She was right. I know my boy and how his body reacts kore than anyone else. I know diabetes more than anyone in my group of friends.
    The hardest thing, and what you found out, is when being quesitoned by others who have an innate sense of authority becasue of their role and perceived status.
    One way forward, if you are calm enough to even think in this way yet(!), is to plan what you will do next time. You have already done some of that. It is empowering.
    Big hugs from my little family to you and yours. You are a star and you did an fantastic job.

  10. You guys have definitely brightened up my day. I really didn’t realize how much that experience impacted me until I start writing my post. Then I have been sitting all day waiting for responses to see if I am completely nuts. My mother kept telling me in the hospital not to take it personal. I know deep in my soul she’s right…she has been on this earth longer than I…but there is an eternal “personal” when it comes to D. It’s really really ego centric for some reason, hence all the depression with D. It’s a tough damn disease and just when you really think damn I got this baby tame it comes in and just wipes you out with no mercy. To have a group of who you hope are educated people not admitting to not knowing exactly what to do with the D…when they just should so we could get on with the task of making someone better…well it’s draining and really personal. I think Meri described it best in one of her posts about taking things too personal. You really do know better, but D is a hard hard thing to put into perspective and that perspective must be continually fluid to survive and be positive. Thank you ladies, I am almost out of my funk!

  11. Joanne says:

    Good job standing firm. You are her Mom (and pancreas) and you know best. PERIOD! We had a similar episode (although not as bad) when Elise was about 18 months. She had a high fever and ketones and the pedi wanted us to go to the ER to get her rehydrated. We went to the ER of a smaller campus of the Children’s Hospital. The doc there wanted to transfer us to the big hospital because they didn’t have an endo on staff at that location. I argued that the diabetes wasn’t the problem, the fever and dehydration was. She wanted nothing to do with us (I think because Elise was so little). But I stood my ground. Finally she came back with her tail between her legs saying she had called our endo who told her that we could deal with the diabetes part just fine, and the hospital staff just needed to address the fever.

    The sweet nurse came up after the doc left and told us she could tell we knew what we were doing and she would have fought a transfer on our behalf.

    Thankfully we haven’t been back to an ER since and the horror stories I’ve been reading make me want to stay far, far away.

  12. Reyna says:

    Sarah,

    I cannot even imagine how frustrating this experience must have been for you. I was a nurse in the SICU/PICU when Joe was diagnosed … and… can I just tell you many, many, many of my collegues did not even know that Type 1 Diabetics have to have insulin to survive. They thought I would have to control my three year old’s diabetes with diet. I worked at a level 1 Trauma Center! These were extremely seasoned nurses.

    So, that right there showed me very early on what we were up against with type 1 care in the hospital…and the challenges we would face with educating the community.

    You can call me anytime Sarah. My number is 802-598-6081. I am serious. I would never want you to feel alone…AND…I would have loved to talk to you. It sounds like you were on it though and you knew what was working for Ellie.

    I think the “protocol” idea sounds great. I haven’t thought of doing one of those for years. I did make one for Joe’s care when he was first diagnosed b/c my dad was dying and I was afraid I would have to leave at a moment’s notice. If nothing else, it will put your mind at ease.

    Love to you and I hope you never need to relive the hospital hell again. Knock on wood, Joe hasn’t been “in house” with “d” since diagnosis. I hope we can avoid that whole business.

  13. Meri says:

    Holy crapola! I’m so sorry, but let me tell you friend, I have SOSO been there! They just have NO IDEA that this isn’t a cookie cutter disease. Sliding scales are crap without the mountains of background information we need to add to the calculations. I’m sorry you had to go through this, but I feel like it is par for the course. Doctors just don’t get it. Especially emergency room doctors. I hate to generalize, but it is usually always the case that we have to fight for our children! And fight we will…they have no idea who they are dealing with! We are D Mamas, hear us roar!!

  14. Lorraine says:

    How did I miss this? So sorry to be late to the party. Wow – you are impressive. Sounded like an extremely seasoned veteran through it all. You were on top of it every step of the way. Didn’t someone somewhere say we should have D-Mama business cards with the caption “not to be messed with” for these very situations? I nearly choked when I read about the nurse pulling on the DexCom. Lordy, that alone would have flipped my switch.

    I’m glad to know anti-nausea meds are something you can ask for as a home remedy. Thanks for that tip. I’m all for home remedies.

    So, anyway – I just responded to your awesome comment on the OP review post I did today. Wanted to letcha know. 🙂

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