Before I laid down to sleep last night, I talked to my husband, who told me that Coulby's ammonia was at 33 (woo hoo!), but his temp. was back up to 103 (boo!). He was awaiting a dose of Motrin. You would not think it would involve all that much to get a dose of Motrin into a kid with such a high fever, but when you are in the hospital, such a simple thing can take, literally, HOURS! You know, the order has to be written for the Motrin, then has to be sent on to be filled, then it goes through several more hands before it finally makes it into Coulby's mouth. It can be extremely frustrating! Unfortunately, as parents, we have no pull in speeding up the process.
Coulby arrived at Hopkins yesterday morning and did not actually get placed in a room until 7:30pm! I wish someone could tell me what takes so long! Especially when, at 3:30, my husband was told that Coulby would get into a room in an hour and a half. Then, around 4:45, it was that he would be in the room in another hour. No, you do not need a refresher math course-it just does not add up! AND Coulby went 2 hours not being hooked up to the IV fluids! Not good for a metabolic patient with a temp. of 103! Who dropped the ball there?? During all of this, Coulby's formula was supposed to be mixed and ready for him when he arrived at the PCRU (the floor on which he spends his hospitalizations). The orders for the formula had been written up around 4:00. Because things were not running smoothly in the ER (and yes, this is Hopkins we are talking about), the doc did not want anything more to be done for Coulby until he was at the PCRU. He wanted to ensure that things would run more smoothly and be done in a more efficient manner than had been in the ER. Coulby was due to get (2) 3 oz. doses of formula with meds. before bed time. This would make sure that he had some medication on board, since he was not getting them through IV.
So, when Coulby got to the PCRU (at 7:30, remember), there was no sign of Coulby's formula, and still no Motrin. By 8:37pm, Coulby still had not received any formula, and was ready for bed. There would be no way he would get 2 doses in before he fell asleep! I did not know what to do, so I called Coulby's dietitian at home. Not something I normally do. She had to call the PCRU to get them moving and figure out what had happened to Coulby's formula that she had ordered to be mixed. And then, miraculously, they found it! Coulby finally got his Motrin, which did in fact keep the fever down throughout the night. But the disappearing formula was re-mixed and Coulby was given one dose before bed. At least he got some of his medication on board.
The story continues...while in the ER, Coulby had a blood draw, from which they took a sample of blood to be cultured. This would help determine what Coulby was fighting and why he kept getting a fever. The nurses at the PCRU informed my husband that they would be taking a sample of blood to be cultured. Confused, my husband said this had already been done in the ER. There was no record of this! After some confusion, the blood was found--sitting in the ER! It had never been sent to be cultured. After solving yet another mystery, the blood was then sent off to its original destination to be cultured.
If you are confused, you can imagine how confused we have been! There are so many little things that seem to always happen when Coulby is at the hospital, and it is exhausting because we cannot let our guard down for a second! We learned that early on. But I would think that Hopkins, of all places, would have a much more efficient way of running things. As Coulby's dietitian said, they (they=those who dropped the ball with his formula AND kept Coulby off of IV fluids for 2 hours while in the ER!) need to get themselves together because they are compromising Coulby's metabolic health! He cannot afford to be the victim of such dumb mistakes. It really is frightening. The whole situation.
As of this morning, Coulby seemed to be himself, despite the hospitalization and the lack of sleep last night. It is kind of hard to sleep with people coming in and out of the room all night long. But his temp. had started to go back up at 99.1. His ammonia, on the other hand, was at 26! Some good news! The verdict is that Coulby can go home today as long as he can eat and drink AND keep it down. Ideally he will get about half of his normal protein intake. When I got off of the phone, Coulby had finished his formula (although it took him a little while), had several bites of Rice Krispies, and had drank several ounces of milk. Not great, but a start.
I will be heading to the hospital around noon if Coulby needs to stay another night. I am praying that he will find his appetite long enough to be cleared to come home. I think he would be much more comfortable here, surrounded by his family...and of course, his trains!
I am sure he would love any words of encouragement, so feel free to comment! I will pass them along to my little trooper!