What a week! Well, 10 days. Brendan is out of the hospital after breaking up with his appendix, and is on the mend, finally, though still moving slowly and definitely in the recuperation stage. He actually went back to work for a half day yesterday, and is there today for a half day. The kids and I are super happy to have him back with us, and things are calming down a bit here (we've all been a little stressed out).
And THANK YOU, everyone, for the thoughts and messages and help during the last week and a half. It's meant a lot to both of us.
Now that the dust has cleared a bit, I'm going to write up our experience with the hospital and medical care in some detail, along with some of the lessons we've learned for next time. Because this event was an extremely educational (in the "yippee mistakes" kind of way) experience.
If you weren't aware, Brendan has Type 1 (aka juvenile) diabetes. He was diagnosed in March 2001, a couple of months before he turned 30. (That's a whole story in and of itself--yes, you can get T1 diabetes when you're well into adulthood.) T1 is the kind of diabetes where your immune system kills off the beta cells in your pancreas. Sadly for you--if this happened to you, I mean--your beta cells are important to survival, since they produce insulin. So T1 is an autoimmune disease that leaves the patient dependent on insulin shots or a pump for the rest of his life.
T1 differs from T2 in many ways. (Keep in mind that I am not a doctor or nurse--this is a layman's explanation and should be taken as such.) T2 patients often (usually? It's been a while since I've explored this issue in-depth) produce some insulin on their own, and in fact, their main issue is that their cells become resistant to insulin, meaning their body doesn't use insulin efficiently. The other thing you need to know is that there are way more T2 diabetics than there are T1s--depending on which stats you find, T1s are about 5-10% of all diabetics.
Okay, here is what happened as best we can recall (Brendan's notes are in italics). Feel free to skip all of these details if they bore you and head straight for our Lessons Learned for Next Time section.
After several days of not feeling quite right, Brendan went to the doctor on the morning of Tuesday, July 17. The NP he saw suspected appendicitis and arranged for Brendan to have a CT done in the early afternoon. Brendan told me before he went to the CT that he hadn't taken his Lantus the night before, and he wanted me to know this in case it turned out to be relevant later on and he wasn't in a position to offer this information to any medical professional.
Okay, some definitions will be helpful here, for those who are uninitiated into the world of T1 diabetes. Lantus is a brand of long-lasting insulin that Brendan takes once a day, at night, to give himself a baseline of steady insulin throughout the day, mimicking how a fully functional pancreas works. He gives himself a dose of Humalog, which acts very quickly, each time he eats something. Also, BGL = blood glucose level.
The reason he hadn't taken Lantus the night before was because he hadn't really been eating due to feeling nauseous. He sugar was stable and in a normal range, and taking more insulin, even long-acting insulin, would mean running a risk that his blood sugar would drop low. (Brendan: Was also checking BGL every 1-2 hours and taking a correction bolus as needed.)
Okay, fast forward a few hours to The Emergency Room.
In the ER, awaiting surgery, both Brendan and I did what we thought we ought to do--we told everyone we saw that he is a Type 1 diabetic. We both assumed that this would be the primary information everyone needed in order to help him manage his blood sugar during his hospital visit. This was, as it turned out, an assumption based on some wrong/incomplete premises.
I asked an ER nurse if he needed an extra bracelet indicating his T1 status, and she said he didn't. (He wasn't wearing his Medic Alert bracelet, which I think we'll rectify should there be a next time, though I'm pretty convinced that it wouldn't have made too much difference in his care, unfortunately). I am used to wearing an extra bracelet that says "PCN, Sulfa" on it because I'm allergic to penicillin and sulfa drugs. I sort of figured that T1 diabetes was special enough to warrant some kind of extra warning (outside his chart).
He had his own blood sugar monitor and insulin with him in the ER. About 45 minutes before they took him back for the surgery, he checked and his sugar was 150. (In non-diabetics, BGL doesn't go above 140, and if it did go up that high, it would happen 1-2 hours after a meal.) For Brendan, 150 is a pretty good number, just a touch high. He took some Humalog, enough to get him down to about 120. He was being very conservative as there are risks to him going very low, too.
About 20 minutes before they took him back, a nurse hurried into the curtained pre-op area with a notebook and pen and asked him about his usual insulin ratios. Better late than never, but really, we were both baffled about why this information hadn't already been acquired, and I wondered why she didn't type this into his computerized chart.
I didn't see him directly after the surgery, since it was finished around 12:30am and I decided to go back home and be with the (very worried and sad) kids.
This is Brendan's memory of what happened in recovery:
"I came out of anesthesia the first time and told surrounding docs/nurses "I'm diabetic" (Response: "We'll take care of that"), "I feel nauseous"' (Response: "OK")."
The second time he "woke up," a little more coherent, he asked someone what his blood sugar was. The response: "You're diabetic?" Whoops.
About 7 Hours Postop
I arrived in Brendan's room the next morning to find two nurses working over him, and heard one say to the other "His blood sugar is 278." I was somewhat surprised to hear that it was that high and immediately wondered if he had a fever or something. Then I remembered that when Brendan is sick or when his body is under stress, his sugar tends to go way up. And what is surgery, if not massive physical stress? Still, I made a note of this number because I'm like that. I assumed that, when the nurses left the room a few minutes later, that they were off to get him some insulin for his IV in addition to whatever else they needed to do for him. Brendan thinks they may have given him 8 units of insulin after this, but I don't remember seeing them do this. We'll have to get a copy of his chart to know for sure.
Something else that's important to keep in mind: having high blood sugar makes it very very hard for any diabetic to fight off infections. Obviously, infection after surgery is a huge concern for everyone, and so that was part of the reason I assumed they were going to start correcting his blood sugar right away.
While waiting around and checking on Brendan, I looked at the bags hooked up to his IV. I noted some kind of "-cillin" and thought "Yay! Antibiotics!" The surgeon told me that the appendix had begun to rupture, so some antibiotics were definitely a good thing. I noticed a bag of fluids containing potassium chloride--again, to be expected that fluids and electrolytes probably need replacing after surgery--and I also noted the words "Dextrose 5%" on the bag.
I mentioned this to Brendan, because it's important for him to be aware that things going into his body have sugar in them, even in dilute or small amounts. Especially when he is already at 278.
Brendan: "This was good to know, but the problem was that there was no way to know how much Lantus was needed to counteract that." (Sadly, he wouldn't be getting Lantus for a long time anyway.)
I left him his monitor (in the case was an extra needle with Humalog in it), figuring he might want to check his sugar on his own in addition to whatever the nurses were doing.
12 Hours Postop
When I left after that first visit, I was a little concerned about the blood sugar, the implications for infection and his overall recovery (not to mention simply how he felt--high blood sugar makes him feel awful--sleepy, out of it, sometimes nauseous, headachy--none of which would be fun to have while in recovery from the appendectomy). But I still thought his blood sugar was being monitored and managed.
When I came back around lunch, I was horrified to learn that his blood sugar was 377, and that he had been the only one monitoring this at all! While I was in the room, he showed the nurse the number 377 on the monitor and she went off to find him some insulin.
After a 30 minute wait, she came back with the insulin and started to push it into his IV. Brendan interrupted this process to inquire how much she was giving him and she told him 18U, 8U to cover his basal rate and 10U for the food that was sitting on a tray (uneaten) next to him. He told her to give him 10U only, because he hadn't eaten yet and wasn't planning to eat the jello, juice, energy drink or other carb-filled items in front of him until his blood sugar was lower. She then said that his ratios (hastily obtained in the ER at the last minute, remember?) indicated he should get 8U for a basal. Note: she was going to give him Humalog, the short-acting stuff, not the long-acting stuff which is normally what he takes for a basal rate. He talked her into 10U, explaining that when his sugar goes this high, the ratio of insulin he needs to take actually changes. She complied with his request.
Brendan: "In hindsight here, I probably should have taken the full 18. But I was trying to be conservative and come down slowly."
We brought up our concern about the high blood sugar, and the IV fluids in a dextrose solution, and reminded her that he hadn't had any Lantus in about 36 hours. She told us that they were mainly concerned with him going too low at this point (they were also fussing at him for not eating anything).
Brendan explained how this was literally impossible, not having had nearly enough (or possibly any) insulin at all in the past day, since, you know, he is a T1 diabetic and doesn't make his own. It was around this point I began to realize they had no clue how to manage his blood sugar.
So I asked her how often they were checking his blood sugar. She said the protocol was right before meals and twice a day. Later that day, the surgeon told Brendan his protocol was "every six hours." Neither of these is appropriate for a T1 diabetic who is in the high 300s, even if you are worried he might take too much insulin and go too low.
We complained to her, and Brendan explained how the fluids he was getting were also contributing to the high blood sugar. He explained that the fluids and electrolytes he was receiving were really making him more dehydrated. How was this possible? When your blood sugar is crazy high, you starting peeing a lot and get dehydrated (two of the main signs of diabetes are peeing a lot and uncontrollable thirst). The fluids he was receiving intravenously were flowing out of him very quickly, which means he wasn't being hydrated at all. On top of which, the dextrose solution was helping his blood sugar continue to rise, making this issue worse and worse. A vicious cycle.
This nurse, who I really liked, thought about what Brendan said, and kind of nodded her head. Then she turned off the fluid drip, keeping only the antibiotics going through his IV. She told us she would check with a doctor about the IV fluids and the dextrose solution. I loved her because she was very patient, truly tried to understand what we were explaining to her, and most of all, because she used her own judgment in a situation that was being dictated by "hospital protocol." We were lucky to have her for most of Brendan's stay at the hospital.
I should mention that at this point postop, he was literally gasping for breath and in extreme pain. I should further mention another symptom/result of high blood sugar--it's hard to breathe deeply. You know how you're supposed to cough and breathe deeply after surgery to clear your lungs out? He literally couldn't do that, in part because of the high blood sugar. But you need your lungs clear due to the risk of pneumonia, something that is more dangerous for diabetics--especially those with really high blood sugar! Another vicious cycle which goes away in the presence of normal (or even normal-ish) blood sugar levels.
Later during this visit, Brendan gave himself a shot of his own Humalog from home. He did this in front of the nurse, and I'm sure she noted both his blood sugar and the fact that he gave himself a shot in his chart. This is not something I am especially recommending--in fact, I should state for legal reasons probably that I am NOT recommending this. It is against hospital policy for patients to administer their own meds from home, and this is a good policy because they want to be aware of/in control of all of the medications their patients receive while there (and while they are liable).
But in this case, he needed to get his sugar under control right the eff away, and since they were apparently unable to do this in a timely manner, he took matters into his own hands. He did it with full transparency and knowledge of the nurses and doctors. He did it right in front of them and was careful to tell them what he was doing and how much insulin he was giving himself. I personally think that if you choose to disregard such rules, then the way to do it is openly and obviously.
Brendan saw surgeon later that afternoon and complained. Sadly, I wasn't there for this meeting.
He was still around 380 at that time (he was checking using his own monitor and shooting himself up with insulin--Humalog, he still didn't have the requested Lantus from the nurses, though I'd brought him some from home but he was so out of it he forgot that I told him I'd brought it.)
If he hadn't been taking his own insulin, I guarantee he'd have been well on his way to 500 at that point. (Brendan: "600 BGL is where diabetics can start to become comatose.") The highest I can remember him ever being outside of his initial diagnosis was in the mid-400s. At 380--after he took his own insulin of his own accord--he was quite close to some of the worst highs he's ever experienced.
The surgeon, who I really do think was more than competent to manage the safe removal of the appendix, explained to Brendan that his (the surgeon's) protocol for diabetics was to check BGL every six hours. He had 15 years of experience and had had success with this protocol with other diabetics and he told Brendan that they could manage Brendan's blood sugar better than he could at this point.
To which Brendan responded: "We can already see that's not true." (It is very important for me to note that Brendan got this line from the "Out of Gas" episode of Firefly.)
There was some back and forth, and according to Brendan, the doc was very "stubborn" and would not formally allow Brendan to manage his own monitoring and insulin delivery. He did finally agree to have an endocrinologist come and do a consultation. (Brendan's "stubborn," too, heh.) However, the endo would probably not be able to visit until the next day. I'm pretty sure my head spun around on my neck when Brendan told me over the phone that the endo wouldn't be there until the next morning.
An endocrinologist met with Brendan around 5:00pm the very same day, fortunately. He had planned to continue to manage his own insulin and blood sugar level monitoring anyway (again, in front of the nurses and making sure they had all of the information he could give them). But it was nice to see the endo right away because . . .
She completely rewrote all of his diabetes-related orders, giving him full and complete control of monitoring his blood sugar and managing his insulin! And got him some Lantus pretty quickly, too!
Basically, she gave him formal permission to do what he was doing anyway. Which is good for the nurses, too, because I'm sure having a non-compliant patient is A.) a pain in their butts and B.) a liability issue.
She also ordered a different kind of IV fluid/electrolyte solution that did not contain dextrose, and that he get a sugar-free diet to eat.
She made him promise not to strive for super tight control at this point (not that he was going for this at all, or would have), and do all the rest of the stuff the nurses wanted him to do, including eat.
Brendan: "I was back down to 140 by that evening, and stayed there since, except for a brief peak at 211 when they put me back on regular (non-diabetic) meals. Most of these meals had prepackaged items, but few of those had carb info. I had to specifically ask for the info, which would take hours to get back to me, if it ever came at all. And then they'd wonder why I wasn't eating. And then I'd tell them."
Lessons Learned for Next Time
That is our very, very long story. We have a couple of take-aways should Brendan ever go into the hospital or emergency care again for something not directly related to diabetes.
Insist on an endocrinology consultation right away. Seriously, that will be the second thing out of our mouths (the first thing will be an explanation of the reason for the hospital visit, of course). Once the endo visited and wrote the diabetes orders to Brendan's specifications, all was puppies and rainbows, both for Brendan and the hospital staff.
Ask the doctor and hospital staff to explain their T1 diabetes protocol in detail, before being admitted, if possible. That would have been great to know from the beginning--both that the surgeon and the nurses had different protocols they were following, and that neither was appropriate for this T1 diabetic (or indeed, most T1 diabetics--every six hours? Really?). Even outside of an endocrinologist to rewrite orders, we could have set things up in such a manner to have mitigated some of the high blood sugar issues had we known what their protocols were and understood how completely inappropriate they would be to manage Brendan's blood sugar.
Do not assume that saying "He has Type 1 Diabetes" conveys all of the information we think it conveys. T1 diabetes is not extremely rare, but it is probably super common either. And it is important to recognize that the vast majority of diabetics the nurses and docs encounter are T2 diabetics, and their blood sugar management is very, very different from T1s. Also I think it's possible that most nursing and hospital staff are used to dealing with diabetics as diabetics--meaning the person is in for a diabetes-related complication. So when the patient is there for something else--an appendix or broken leg--diabetes as such just isn't going to be at the forefront of what they're thinking about when they are delivering care. So keep this in mind.
Order the sugar-free meals from the cafeteria, and insist on carb counts for all of the non-labeled food. And prepare to wait for a LONG time for them to get back to you with carb info. Still, when they call you or come get your menu choices from you during your stay, say "sugar-free diet" every time.
Assume positive intent. Always always always, in all areas of life. This was so super frustrating (and I was terribly worried, I can't even tell you how much) but I always remembered that they were doing their best and were not trying to actively harm him. This made our conversations with them much more effective, especially those conversations where we were explaining to them that they were actually harming him.
Be stubborn, and be an active participant in your own (or your loved one's) care. This is not specific to the diabetes stuff at all, just a good general piece of advice for anyone going into a hospital or dealing with an acute or chronic illness. INSIST on what you know is right and DO it. Repeat yourself to anyone who will listen. Say it again and again and again, until you find someone who will listen. Notice things for yourself--I noticed the dextrose solution and that was good information to have. Brendan was in no position to notice it for himself, and the hospital clearly didn't think it was a big deal. Brendan refused to eat food he knew would exacerbate his blood sugar issues, even though they fussed and fussed and fussed at him to do it. Don't be passive; question what they are doing and why; find out more information; make them tell you, each time.
Oh! Thought of another one: Monitor your own blood sugar at the hospital. Bring your monitor and strips and use them if possible, or have a loved one take your blood sugar. Because Brendan was constantly checking, he was able to spur the staff toward getting his insulin a little quicker. He had objective evidence that he needed more insulin, and the nurses, especially the one we really liked, used that information. It makes me feel slightly nauseous to think how high he might have gotten if he hadn't been actively monitoring (every 1-2 hours that first day). Anyway, don't wait for them--they are busy and everything takes a really long time (Corollary: Be aware that it will take forever for them to bring you insulin and factor that in to your monitoring plans and insulin dosage). You know how quickly blood sugar can rise and drop, so stay on top of it, especially if you think they aren't monitoring often enough.
That's all for now. I may edit this post from time to time as we think of more details (if you spoke to me while this was all going on and remember something I told you but didn't note here, please jog my memory!).
We really really want others to learn from our experience. If you have other advice and tips, I'd love to hear them in the comments! Thanks.