Encore

Last night treated us to a repeat performance of the previous, with a twist. As feared, Joseph was again teetering between high ketones, nausea, ketoacidosis, insulin, fever, hypoglycemia and more nausea. For a primer on how it dangerous it can be, see On Razor's Edge.

I was still up at 3:00 a.m., after having tried for the previous half-hour to encourage Joseph to get some food in his stomach so that I could give him some insulin without crashing his blood sugar. All of a sudden, Allyse woke up crying with an upset stomach. We were able to calm Allyse quickly, so I started reading to pass the time while I waited for the next time that I was going to test Joseph to see if he was showing any improvement. Because he had several consistently high ketone tests in a row, I had already determined that I was going to take him to UMC if he tested high again.

In the meantime, it soon became apparent that Allyse would not be able to sleep unless and until she vomited; it was no longer a question of if, but when. It also was fairly obvious that she had food poisoning from eating a hamburger that had not been completely cooked. Allyse had eaten dinner with her Sunday School class at their teacher's home. While I was reading, I came across a story where Kroger (parent corp for Smith's) had expanded a recall of ground beef tainted with E Coli to include Las Vegas Smith's stores for beef dated "sell by" through nearly the end of this month. Smith's is one of only two grocery stores in our neighborhood.

Now that I was completely freaked out, I was convinced that Allyse had to get rid of what was making her sick. I unsuccessfully tried to convince Allyse that sticking her finger down her throat would cause her to gag and get rid of the offending food. That was Plan A; Plan B was to trick her. She had earlier asked for water, and I told her that water wasn't a good idea because it would likely make her stomach more upset. I told her that when I still had hope that Allyse would be able to get back to sleep. However, now that I knew Allyse was truly sick, I asked her if she was thirsty, and when she said she was, I encouraged her to drink some water.

Within minutes, Allyse had lost it, and almost immediately, she said she was feeling much better. She quickly got to sleep and slept quite soundly the rest of the night. I, on the other hand, had to wait a while longer to test Joseph. I was already planning how I would just get ready for work, take Joseph to UMC, get him admitted in the PICU, and later in the morning walk over to the NICU to meet with one of the neonatalogists prior to taking him to court for a hearing that morning. However, when I tested Joseph at 3:30 a.m., I was pleasantly surprised to learn that Joseph's ketones had almost completely returned to normal.

As a result, I was able to get to sleep by 3:45 a.m., only to be awoken by Benjamin at 6:30 a.m. I won't bore with all of the day's details, but I highly recommend to avoid attending court hearings and meetings of the Board of County Commissioners on just two hours and forty-five minutes of sleep.

On Razor's Edge

When I got home from work tonight, my three-year-old, Angelina, met me and informed me that she was sick. Since Joseph is the one who has been sick for the past few days, and since I had not heard anything about Angelina coming down with something, I suspected that she was really okay. I asked Angelina how she knew that she was sick and she said, "My throat is in my neck."

After repeatedly asking Angelina what she meant, I gave up trying to figure it out. I don't know--maybe it's gang code. In any event, she seemed shocked, and actually laughed, when I told her that my throat is in my neck as well.

After the illness that has beset our family for the last few weeks, it was easy to understand why Angelina thought she was sick. In the first week of July, Allyse and Benjamin came down with a prolonged fever. For Allyse, it lasted about five days, and it caused her to have nausea the majority of the time. Benjamin was pretty darn ornery (for him) for about a week. During the next week, it hit Joshua, but to a much lesser extent than Allyse.

We hoped that we had escaped with Joseph, but finally, the fever hit Joseph last Thursday. He experience a brief reprieve on Friday (long enough to go to school and compete in the Art Quest), but then it returned with a vengeance on Friday afternoon, and it hit me on Saturday.

The brakes on my car were in bad shape, so I completely changed out all four rotors and all of the pads on Saturday. However, by the time I was finishing, I was starting to feel pretty bad, and I came down with a fever and body aches. I also had a splitting headache that did not leave until Monday morning.

No matter how sick I felt, it didn't compare to Joseph. Due to Joseph's diabetes, the last 48 hours have been an absolute roller coaster ride. Once again, ketoacidosis is the issue. Julene and I have been doing everything we can to keep from having to return Joseph to the Pediatric Intensive Care Unit at UMC. It is one thing when Joseph's insulin pump is not properly delivering insulin (for whatever malfunction). It is a totally different animal when he experiences nausea due to viral infection.

Here's the problem. With nausea, Joseph cannot keep food and drink down. Without food and drink Joseph's blood sugar will not be high enough to give him insulin. Without insulin, Joseph's ketones rise, and he becomes at risk for ketoacidosis. In addition, if his blood sugar gets too high, he gets ketones. When he has ketones, then he gets even more nauseated. However, once he gets ketones, if we give him too much insulin to reduce the ketones, then we risk sending him into hypoglycemia. In a mild case, hypoglycemia also increases nausea, which then makes it nearly impossible to get food into Joseph to make his blood sugar rise again. In more severe case, hypoglycemia causes coma and death.

It feels as if we are performing a balancing act on a razor's edge. If we teeter even a small distance, then it rapidly sends everything completely out of whack, with potentially disastrous consequences. Then we spend the next several hours trying to regain some sort of equilibrium before he flies off in another direction. Last night I was up until 1:30 a.m. testing Joseph's blood and testing his ketones, giving him insulin, giving him carbohydrates, and praying that it would all come together. Then, Julene was up in the wee hours of the morning and I was back up at 5:15 a.m. for more of the same.

There were numerous times yesterday and today when we were minutes from taking him to the PICU. Julene called Joseph's doctor, explained the situation, and tried to get some more direction. They seemed surprised that we have been able to hold it together this long. However, today Joseph was so tired of being nauseated that he was asking to go to the hospital.

I still am fighting the fever, and the headaches and body aches are intermittent. Mostly, I am exhausted, and I know that Julene is tired too, having to take the brunt of it Monday, in addition to caring for the baby and the rest of the children. We are just praying that Joseph's fever will break on Tuesday, and that he will feel a settling of his digestive system at that time so that things can return to their normal state of chaos.

Ketoacidosis

I haven't written much lately due to recent events in our family, the most impactful being Joseph's trip to the hospital. On November 23, 2007, Joseph started to become hyperglycemic (excessively high blood glucose). His high blood sugar was seemingly resistant to our efforts to lower it through increasing the amounts of insulin. In the past, this has sometimes indicated that Joseph had illness coming on.

Thus, when Joseph became nauseated on the evening of November 24th, it appeared to confirm the possibility that his hyperglycemia was caused by illness. However, when Joseph began vomiting and his symptoms began to significantly worsen, we wondered whether he might have ketoacidosis. Left untreated, ketoacidosis can quickly cause coma and, if prolonged, can cause death.

On the morning of November 25th, Joseph’s ketones tested “large,” which increased the suspicion that he was suffering from ketoacidosis. I rushed Joseph to the Pediatric Emergency Room at University Medical Center. When we arrived at the triage center, the nurse did not even acknowledge that we were standing there. Instead, she was entirely focused on a child whose parents had brought him to the ER with a soar throat and a slightly runny nose.

It took me about three minutes before I realized that the nurse would just continue on and not acknowledge us until she had completed treating the child with an acute case of the sniffles. I interrupted the nurse and let her know that I had a diabetic child with suspected ketoacidosis. The triage nurse finally acknowledged that I was there, and she stopped an ER nurse who happened to be passing by at that time. The ER nurse immediately took Joseph, asked about his ketones, and tested his blood.

It was confirmed that Joseph was suffering from ketoacidosis. He was seen by a doctor and they started an IV a few minutes later to start lowering Joseph’s blood sugar and to treat his high acid level. After about two hours, Joseph was transferred to a room in the Pediatric Intensive Care Unit (PICU).

Going to the PICU was particularly difficult for me as we were just two rooms down from the room that Joseph was in for several days when he first had onset of diabetes. As poignant as that previous experience was, I cannot set foot on the floor of the PICU without feeling a flood of emotions.

Joseph was treated and began to feel somewhat better by the night of the 25th. He had a nice nap in the afternoon and he was finally able to keep his food down. We enjoyed a visit from the family, who thankfully brought some DVDs so we didn’t have to watch five Hannah Montana episodes in a row. Joseph wanted to watch Star Wars - Episode I (which, honestly, has dialog about as contrived as the random episode of Hannah Montana), and one of the nurses brought him a small Star Wars Lego set.

As treatment was progressing well, we were supposed to be released on the morning of November 26th. However, we suffered a setback when the nurse forgot to give Joseph insulin following his breakfast. Since he was still hooked up to an IV that had a bag of insulin attached, I assumed they had taken care of him. As a result, his blood sugar soared again before they caught their mistake, and it took a while before they were able to get Joseph back to a normal level.

They were going to try to keep Joseph longer, but the incident with the nurse forgetting the insulin gave me the leverage to speak with the doctor and let him know that Joseph gets better care at home. The doctor was still reluctant, so I subtly let him know that I would challenge any and all hospital billings from the point that they messed up. The doctor agreed that Joseph was ready to be discharged.

Due to caring for Joseph, I did not sleep more than an hour on the nights of the 24th and 25th. However, I returned home on the 26th to find that all of my other children, with the exception of Benjamin, had taken sick. The worst thing was that I couldn’t help Julene because I was so exhausted from not sleeping for three days. Honestly, I still don’t feel rested, but I think that could have something to do with trying to catch up on work and having a newborn in the house.

To complicate matters, Joseph had increasing blood sugar shortly after returning home. After an increasing pattern was established, I first suspected that the insulin vial was defective, and I changed to a new vial of insulin. This change bore results within hours, confirming that we must have had a defective vial of insulin. It took Joseph a few more days to really restabilize.

Bad insulin is extremely rare in our experience. In nearly five years of managing Joseph’s diabetes, there has been only one other time that I can recall that we suspected that the insulin was bad, but even then, Joseph did not go into ketoacidosis.

In part, that is what made this experience so scary for Julene and I. Joseph has been hyperglycemic numerous times without going into ketoacidosis that we don’t quite understand why this time was different.

We always try so hard to make the right diagnosis of the situation, but did not this time. I was trying to explain to a friend what it is like to manage diabetes, and I could see that he wasn’t getting it. Finally, I explained that when Joseph’s blood sugar exceeds the target of 150, it could be any of the following: miscalculation of carbohydrates in what Joseph ate; Joseph ate something that he did not tell us about; we waited too long after the meal to give Joseph his insulin; Joseph had a substance on his fingers that skewed the results of his blood sugar test; the meter that tests blood sugar (the glucometer) is defective; the test strips used in the glucometer are defective; Joseph is getting sick; Joseph is under stress; Joseph’s pump is not pumping enough insulin; the site where the tubing goes into Joseph’s skin is not properly situated; the insulin is defective, etc. By the way, all of the foregoing have happened.

When I explained to my friend that Joseph’s blood sugar often exceeds the target rate several times a day, and that we have to figure out why (from the many choices) he is high on an hourly basis, my friend finally started to gain some understanding of the complexity, responsibility and stress that can come from managing diabetes.

I am thankful that we can manage diabetes, and I am extremely grateful for the technology that makes it possible for Joseph to live, but sometimes it is a tremendous burden, and relatively few can or will understand. It is like watching an athlete, who makes incredibly difficult feats appear easy; as long as we are managing well, you won’t understand the work and the stress that goes into it.

Breaks My Heart

I posted this old photo to remind myself of how young Joseph was when he had onset of diabetes. This picture was taken in August 2003, six months after Joseph's onset.

I was reminded of his diabetes because on Saturday night, Joseph's blood glucose dropped dangerously low (33) right at bedtime. He became weak and wobbly. We gave him some Gatorade to drink in an attempt to raise his blood sugar quickly. Joseph said he felt cold, so I sat him on my lap and covered him with a blanket to warm him.

While I was holding Joseph, he turned to me and quietly said, "Daddy, I don't want to have diabetes." Tears immediately formed in my eyes as I blathered some response that provided Joseph a little comfort, but left me feeling empty.

The thing is, I don't want Joseph to have diabetes either. I wish that we didn't have to worry every night whether he is going to have a major problem that could result in hypoglycemic coma or worse. I wish we didn't have to be concerned about him being ostracized or belittled at school due to his differences of constantly checking his blood and wearing an insulin pump. I wish that I didn't have to face what promises to be tumultuous teenage years, particularly with Joseph learning to responsibly manage his diabetes during a time when the last thing that he will want is being seen doing something strange and difficult for other teenagers to understand.

I wish that I could do something to make it go away and be cured -- now. Our family continually prays for a cure, but lately, we have not done much to support the Juvenile Diabetes Research Foundation (JDRF). Our plate has been so full that I have a hard time adding a helping of JDRF. But if I don't get involved, how can I expect others to care?