Parker's Fight Against ARPKD: Making great progress, but frustration is setting in...

Today has been a very rough day on all of us. The events that transpired were all really good progress for Parker, but it wasn't easy. In the hospital, the doctors rotate every few days, which is expected. I mean, everyone needs a day off, right? The problem with this is that when new doctors come on, they haven't seen him themselves. They want to get a chance to see first hand what is going on, which is understandable, but can be frustrating for us, since we have already lived it once. So the doctors that came on today came up with a plan pretty quick, which was great, but made decisions on certain things a little too late in my opinion. The plan was great, and I completely agreed with it. We really needed to start feeds to get something in his belly. We are on day 5 now, and he's been on TPN IV fluid the whole time. The "real food" would help to bring his electrolytes and blood sugars up, and get his bowels moving. His Potassium and Phosphorous have been continuously low since surgery, and his formula has both of those in it, so it would help raise them. His blood sugars have also been dipping down, so of course food would help to bring those up as well. We needed to get an NG tube back into his nose and ASAP. This was a feat in itself. We got the tube in, taped it all down, and called x-ray to come verify placement. Well, after further review, the nurse had the tube too far in, and it was actually in his intestines. So, the doctor told her to pull the tube back 4 cm and redo the x-ray. This wouldn't have been so frustrating if we wouldn't have already taken the x-ray board out from underneath him. Now we have to raise him up again and move him around. Then we have to take the tape off of his face, pull the tube back out, and re-apply the tape. So we go through all of this, they perform a second x-ray, and low 'n behold it's still too long. Luckily this time we were smart enough to leave the board underneath him while we checked the x-ray. So, the doctor orders our nurse to pull the tube back another 4 cm. Now we have to rip the tape off again, pull the NG tube back and re-apply more tape. Oh, and then get a third x-ray. I guess the saying "third time is the charm" holds true in this situation, because the tube was finally in the right spot. So as long as he held down his feeds with no vomiting, and his electrolytes came up, they would be happy to send us to the floor. We started feeds out at a low rate, only 12 ml's an hour. We increased the rate four hours later to 17 ml's an hour, and he handled it like a champ. The plan is to increase feeds at a rate of 10 ml's every 4 hours until we get to 42 ml's per hour. This will be his full feed for now.

The second issue of the day was pain management. Last night we were all packed and moved down to the floor when the team realized that their pump wouldn't accommodate Parker's continuous dose of pain medicine. So, when the pain team rounded this morning they had two options for us. The first being that they were calling pharmacy to see if they could dilute the concentration of his dilaudid. If the concentration was lowered, then he could get a higher rate per hour, and the machine could handle the dose. If pharmacy wasn't able to accommodate this, then we would stop his continuous dilaudid altogether and see how he handled things. After all, he could always have "rescue" doses when he needed them. Well, guess what? Of course pharmacy couldn't dilute the dilaudid, so we had to stop his continuous pain medicine. He was doing great with this. He was two hours out with no drip, and he had just crashed out for a nap. Jason and I decided to leave and get lunch while things were quiet and peaceful. We could both use the fresh air, and a decent meal, so we walked a couple blocks to a little restaurant. When we got back to the room, Parker was up, and I could immediately tell something was different. He was loopy! I asked the nurse at the station what happened, but she didn't have much information for me other than they had to give him a rescue dose of pain medicine. When our nurse got back from lunch, she said he woke up, looked around, and went frantic. She said he was in a full out crazy episode. She said that she honestly thought his "fit" was because we weren't here, but she couldn't get him to calm down, so the doctors decided to give him some for sedation. Guess we have learned our lesson. Lunch will be in the room from now on. I'm happy to report that after this dose at 1:45, he has only needed one other rescue dose and it was five hours later. All-in-all I would say that he's handling things pretty well for being 5 days out from surgery.

The last issue of the day was the central line. The renal and surgery teams ordered for it to be taken out yesterday, but the ICU team wasn't quite on board. They didn't want to pull it out until he was tolerating food on his own. So, by late this afternoon he was tolerating the feeds fine, and the nurse went to draw labs out of it. Low and behold it wasn't pulling back well. Apparently, in one of his fits today, he twisted it, so the ICU team finally got on board and decided to pull it. This was probably the most traumatic experience I have ever been through. Jason left the room, fortunately, because I honestly don't think he would have handled it. Actually, he well told me that he wouldn't have. It took three grown adults to hold him down while one of the nurses removed the sutures and pulled it out. I was one of those adults, and watching your child thrash around a crib with his entire body coming off the bed, arms and legs wailing in the air, is the worst feeling ever. He was turning bright red, and he was drenched in sweat from head to toe. The nurse got all of the sutures out, and went to remove the line, but there was a lot of resistance. They called the attending into the room immediately so that he could handle things. The line goes extremely close to your heart, so the nurses didn't want to pull too hard and cause any damage. When the attending came in he was able to get it out rather quickly, and most importantly Parker was safe. After this experience, I was completely drained and had a major migraine.

His afternoon labs came back much better. His phosphorous and potassium came up a good bit and are in normal range now. His blood sugars went from 70's to 120's, which I'm told is a wonderful thing. Most importantly, his tac level, which measures his anti-rejection medicines, looks great! The goal was for his tac level to be between 5-10, and it came back at 9.5 even with a little spit up last night. Overall, everyone is pleased. Surgery, nephrology, and now ICU are all ecstatic with his progress.

This is the point where late decision making has now cost us. At 3:30 this afternoon, the renal floor called up to see if we were going down today. Since the ICU team couldn't give them a difinitive answer, they had to give our bed to another child admitting. Well two hours later, the team decides that we are now approved to go to the floor. I didn't get up immediately, but after a little bit I decided to start packing. Big mistake. The renal floor called back up to tell our doctors that they did not have an available room or bed for us. So, guess who is stuck in the ICU for one more night? Yep, that's right. Us!

Like I said, everything that occurred today was a huge step in the right direction, but it was draining for all of us. I'm whooped. If you text either one of us today, and we didn't answer, don't take it too personally.

Sitting up some..