Thursday, October 10, 2013


We had a rather rough night last night. First, it started with Mr. Party Animal not wanting to go to sleep. Anyone shocked by this? Yeah, I didn't think so. I was a nervous wreck with the catheters and tubes hanging out, especially since it wasn't the same system that we were used to. This system exposed more of the "critical" piece of Parker's catheter than I was comfortable with. Of course, he wasn't worried in the least, so he kept on climbing and squirming, continuously tangling himself in all of the lines. It wasn't until after midnight that I finally got him to calm down. Right after that, the dialysis machine went haywire again. It alarmed quite a few times, but two nurses and 20 minutes later, it was fixed. It was closer to 1:00 when I finally got to sleep, and the nurses were in and out all night. By 6:15 a.m. the nurse came in to wake us. The IV team was on its way down to start Parker's IV and she had to put hot packets on his hands. These generally help with the location of veins and placement of IV's, but Parker was not  having this. First, no one-and I mean no one- wakes Parker up from his sleep. It's a no-no. Second, Parker does not like anything that is tightly bound to him. He has claustrophobia issues like his momma. Third, they were pretty hot. I forgot that he had them on at one point, so I went to snuggle with him, and thought "oh crap, the last thing we need is a fever today!". Yeah, it was just the hot packets heating his entire body. Quickly after the IV was placed we had to scrub him thoroughly with these wipes that left everything really sticky. He doesn't like a normal sponge bath, much less a sticky one, so I will leave your imagination to play out the end of this scenario. After this, things started to move pretty quick. The transport team was in the room before we knew it, waiting to take us down to the operating room holding area. We arrived down in the holding area around 7:30, and once downstairs, we had the anesthesiologists come in and give us the usual run down of procedure and possible complications. We signed the consent forms for surgery- I mean, as if we wouldn't, right?

Once all of the legalities and paperwork were taken care of, we had to wait around. This operation was a very finely tuned, cooperation between our doctors at CHOP and Patty's doctor at HUP. They had to coordinate things just perfectly to make sure that they were in the exact place they should be, based on the others progress. At 8:30 a.m. I got the message that Patty had been taken back to surgery, and about 30 minutes later was Parker's turn. Luckily, anesthesia came in and gave him a dose of versed, that literally took effect in 15 seconds.He was on cloud nine and pretty giddy about it. I, however, lost it the second they took my baby out of my arms. I swear the nurse wasn't 2 foot down the hall and I sobbed like a baby, and it wasn't a pretty sob either. The act of handing over your baby to a stranger, and knowing that their life is literally in their hands is so heart wrenching. The emotions take over immediately.

So this is when the extremely long waiting game started, at 9:00 to be exact. We were warned that it was going to take nearly an hour and a half to get Parker prepped with IV's, arterial lines, central lines, and intubation of a breathing tube. At 11:27, surgery officially began. We had a really sweet nurse Marguerite who came to us every hour to keep us updated. We knew exactly what she looked like, so every time she entered the waiting room, whether it be for us or not, we sat straight up.

At 1:15 Marguerite let us know that Patty's kidney, which we have yet to give a name to, arrived in Parker's operating room safe and sound. She told us that as she was walking out to update us, the doctors were unwrapping it and that it was nice and pink. This is a good thing, because it means that it has good blood flow. The time that the kidney was on ice was very short, thanks to the amazing teamwork that they have here. Forty-five minutes later, around 2:00, she came out for another update to let us know that the kidney was in place and that the doctors were meticulously working to get all of the tubes and arteries connected. His body is such a small work space, that the doctors were making sure to take their time and be extra careful. Every time she came out to speak with us, she boasted about how well Parker was doing. She always made sure to tell us that his vitals looked great and that he was handling things extremely well. She kept telling us that he hadn't needed a blood transfusion, but not to be shocked if he did need at least one unit. It is such a major, lengthy surgery that it's nearly impossible for a child of his size not to need extra blood. It's not necessarily a bad thing either, because it will help him to bounce back quicker.

An hour later at 3:00, like clockwork, Marguerite was back to tell us that the kidney was pro-fused and had blood flow going to it. The doctors were only expecting the surgery to last another two hours, just to finish connecting the ureters and arteries, and to suture him up. At this point, though, she did say that they had to give him a unit of blood. At 4:30, the surgeon came out to talk to us. He said that surgery went very smooth and that things looked great. Parker was completely sutured up, the kidney was producing urine, and they were able to extubate him in recovery. He was completely breathing on his own!  He did say that the portal hypertension was more moderate to severe than they expected, but he was sure that the liver would be able to tolerate the transplant without any issue. Parker's bladder, however, was extremely small. He said that usually when they put a catheter in, they inflate a balloon to 3 cc's, and in Parker they could only inflate it to 2 cc's. He guaranteed us that Parker will have a catheter for at least two weeks to help his bladder stretch, and that we may have to be discharged with it. We are fine with that, though.. We knew that his bladder could pose an issue like this, because it has literally never been used. The good news is that I will not have to place the catheter myself. That was the part that made me nervous. Catheters are the entire reason I decided nursing school was not for me!

Other than those two issues, Parker's surgery went great, and all of the doctors are extremely impressed. The kidney is working perfectly. The two labs that are drawn to determine kidney function are BUN and Creatinine. Before surgery, his BUN 44 was and his Creatinine was 4.4. Immediately after surgery, his BUN was 34 and his Creatinine was 1.5. These numbers will continue to lower as the days go on. An hour after surgery, Parker had already produced 120 cc's of urine. Three hours after surgery, he had produced over 400 cc's of urine. His magnesium, potassium, and calcium are all running a little low at the moment. The doctors are confident that these things will work themselves out in the next few days. I think it's ironic, though, because just yesterday I was giving Parker large doses of Kayexalate to bring down his high potassium and he was on low calcium dialysis, because his calcium was high. It's amazing the difference one day, one hero, and one kidney can make.

As of right now, we are trying to keep his pain under control. Every now and then he wakes up with a whimper and a moan. He starts yelping and wretches his back in pain. We've had to give him Dillaudid three times in the last two hours or so. They also just gave him rectal Tylenol which should help take the edge off. He looks so much better than I pictured he would in my mind. He really is taking this so well!

The point in the day where I got really impatient was the time waiting to see my baby again. Now that I know that he is done with surgery, and doing well, I want to see him- now!  Yes, I realize that is unrealistic, but I'm allowed my moments. Well, of course it doesn't work that way. From 4:30 until after 6:00 I paced the floors. I shook my leg a million miles a minute. I sat. I stood. I sat again. Nothing helped. Out of all of this, though, the worst part was watching another family crumble to pieces right in front of me. I don't know their story, or their circumstances, but what I did gather was that their daughter was just taken from them very unexpectedly. My emotions went everywhere. I wasn't sure if I should feel guilt for being so impatient to see my child, when the doctors are obviously doing what's right for him. I didn't know whether i should feel panic, because "what if...". What I did know, was that I felt complete and utter grief for this family. I can't imagine what they are going through, and quite honestly, I don't want to. I am counting my blessings tonight and saying many, many prayers for them!

As for us, we still have a really long road ahead.  Pain, infections, and rejection are just a few of our major worries right now. Please continue to pray! You have no idea how much the outpouring of love and support from today meant to us. We had no idea that it would turn into such a massive event, but we are so happy that it did. We are completely overwhelmed, but in a good way! If you posted pictures today, please make sure that you tagged me in the picture itself. That is the only way that it will save to my photos. I want to have them all printed so that I can put them in a book for Parker.

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