Tuesday, October 15, 2013

A much better day today..

My favorite thing about this hospital is the way that they keep you included in everything. When they make rounds, there are 6-7 doctors all out in the hallway with their computer stands. Before they even begin, one of them comes into the room and invites you to join them. They actually involve you in the conversation by asking you questions, and welcoming your feedback. In their eyes, as a parent, you know more about this child than they do- which is true. This is new for me. I've experienced some doctors that when I offer feedback, have told me that I don't have a medical license, so I don't know what I'm talking about. Those encounters infuriated me. Yes, you are right when you say I don't have a medical license, but I can guarantee you that I know this child 1,000,000 times better than you ever will. I wish that all hospitals would take this protocol into consideration.

During today's rounds we discussed how well Parker was doing. His electrolytes, such as Potassium and Phosphorous, look way better this morning. His Potassium is now 3.7 and his Phosphorous is hanging in at 4.0 This is much better than the mid 1-2's we have been getting back the last few days. His platelet count came up from 67 to 146, which is a huge relief. They were monitoring this, and if it would have gotten too low, they would have considered a transfusion. Also, his white blood count came up from 3.5 to 9.4, which is really good for him. The lower his white blood count is, the more susceptible he is to infection. Lastly, his test for EBV came back negative, which is a good thing. This is one of those viruses that we will have to test for frequently, because they can be dangerous in transplant patients.

 His pain management is pretty well under control, so the pain team took him off of the continuous dilaudid drip yesterday around 11:15 and since then has only needed three rescue doses at 1:45, 6:45, and midnight. It is now almost 2 p.m. and he hasn't had another dose, yet. So, we are now 14 hours with no pain medication, which is pretty darn good for five days post surgery. They have him on Tylenol round the clock, and that seems to be doing well. They are planning to change the pain plan for rescues as well. They are going to leave the option for IV dilaudid rescues for extremely severe pain, but are planning to change the general rescue doses to oral oxycodone, which isn't nearly as strong.

One of the big concerns yesterday was the drainage coming from the incision site. Every time that they change the gauze out on the incision, they have to weigh it to measure how many ml's of fluid is in the gauze. Yesterday, one gauze change was getting over 120 ml's, and there were quite a few dressing changes. Over night last night, the gauze only had to be changed once, and there was only 20 ml's of drainage on it. So far this morning, the dressing looks great, not saturated at all, so hopefully the drainage issue may be coming under control.

His feeds are almost at full capacity. The fluid goal for him now that he is post-transplant isn't much difference from pre-transplant. Pre-transplant, he was getting 1,182 ml's of fluid a day, which is 40 ounces. Post-transplant, the goal is 1,100 ml's a day. I'm really glad that this didn't increase dramatically like we were told to expect. Initially, they told us that he could require as much as 2,000 ml's a day, which is pure craziness for a two year old. At this exact moment, he is getting just over 1,000 ml's a day, so we don't have far to go before he is at his full nutrition. Full nutrition, of course, is a requirement to go home, along with a nutrition schedule.

The Nephrologist's main concern today was his weight. He is still up quite a few pounds from before surgery. All of this weight is fluid related from during surgery. During surgery they had to pump his body with tons of fluid- over 3,000 ml's- to jump start the kidney. They have started giving him doses of Lasix to help rid his body of this fluid through his urine. Luckily, it is already working wonders. His belly was really distended, because of the fluid, so I am hoping this will help to relieve some of the pressure.

We had a lengthy discussion, or training, today with the renal transplant coordinator. We talked in length about lab work, medicine, infection, rejection, when to call in, who to call in to, etc. All of the things that we need to discuss in order for everyone to feel comfortable once we do get to leave the hospital.

Parker will only be going home on six medicines as of now. Of course, this could be subject to change before we leave. Three of those medications are anti-rejection medicines-Prograf, Cellcept, and Prednisone. The Prednisone is a steroid that we will slowly taper down to a minimal dose over the next eight weeks. The Prograf and the Cellcept are the major medicines that protect his kidney. These have to be given at exactly 12 hours apart. Right now they are being given at 8 a.m. and 8 p.m. When we do labs we have to get labs at 8 a.m., before his morning dose, to get an accurate level of how well he is absorbing the medicine. Other than those three medicines, he will be on a prophylactic antibiotic, Bactrim for a year. An anti-fungal swab for his mouth to prevent fungal infections such as thrush, called Nystatin for six months. Lastly, he will be on Zantac, because some of the medicines can cause tummy issues, so they want to make sure it doesn't cause reflux. The only problem that we are having with this so far is that the Cellcept is causing some diarrhea issues. Parker has been making stinky heinie's all day! 

As if all of these things aren't already great, some of the best new of the day is that a bed finally came available on the floor, and we were just moved down here. Of course, the bed came open 20 minutes after Parker fell asleep for his nap, but that's how it always works, right?

There are three main things that we are working on now to get him discharged from the hospital. First, we are working on perfecting his tac level, which is the level of anti-rejection medicine he is absorbing. We have to have this absolutely perfect before leaving the hospital, and his is pretty low right now. The information that I got yesterday was incorrect. His tac level was not 9.5, it was 1.5, which is not good. They are looking for it to be between 5-10, so they gave him a second supplemental dose today to help bring it up. Then we have to find the perfect dose for every day use, and that will be a lot of trial and error. Second, once we have him at full feeds, we have to find a daily feeding regimen that works for him. The only reason that this may be difficult is that some of his medicines are better without food, and some are better with food. Third, we have to do a second round of lasix today to get some more fluid off of him. Hopefully, this second round will pull enough fluid off of him so that he doesn't need any additional doses.

In the meantime, we are having Urology come around in the next few days to consult on his bladder. Apparently his bladder is a lot smaller than expected, so they are leaving the catheter in for a few weeks. We will most likely have to go home with it. If we do, the plan is to disconnect it from the foley bag and let it drip into his diaper. The problem with that is that you don't want him pooping near the catheter, because that is a risk for infection. So we will have to double diaper him. This means putting one diaper on, cutting a hole in it for the foley to go through, and then putting another diaper on top of that. Essentially the inside diaper will catch the poop, and the foley will be pulled through the hole and into the outside diaper, which will keep the catheter safe from the poop. Before we go home, though, they will have urology come by to take a look at things and see how his bladder is progressing and stretching. Hopefully, it is doing well enough that we can take the catheter out before leaving, but I'm not expecting that.

Essentially, Dr. Beluarte said it's not impossible to be getting discharged by the end of the week, but we are not expecting that. The beginning of next week seems more likely to us. We especially don't want to get our hopes up to something that is only a "maybe". We are just grateful that he has done so well through all of this that they are even considering discharge that early. The doctors honestly can't believe how well he is doing, which is wonderful, but kind of scary. It's almost too good to be true!

The best news of the day was a story that the ICU attending told me. She asked if we knew exactly how powerful this kidney really was, and I was kind of confused as to how she meant it. She apparently was in the operating room, and she says that the kidney actually started to produce urine before it was even inside of Parker's body. She said that as soon as they connected the ureter to the kidney, Parker began to pee, which is completely amazing! She also said that it has been a long time since she has seen a creatinine of 0.1, which is perfect! She told us to make sure that we let the donor know that she is a true hero, especially in her eyes. I explained that we have all let Patty know how much she is a hero over and over again! We will continue to tell her that for the rest of our lives, too!

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