For those of you that havent been able to keep up with the day by day, here is what happened.
We were admitted to the PICU the night before so that dialysis and labs were done on time for Buddy and so that I could be ready for surgery very early. Even if I would have been able sleeep the night before giving my son my kidney, I wasnt able to because the nurses had to come in and do something to either me or Brayden almost every hour.
The morning of surgery was very hectic, surreal, happy and scary all in one. I got up about 4 am and took a shower in Chlorhexadine, which is an "anti-germ" solution. Then, we gave buddy a scrub down with it after I got him off of dialysis. About 600, the transplant nurses, docs and family started coming in and checking on us. Im not real sure what time we went down to the holding room but we rode down on my bed. THIS is where I became a basketcase. I really started losing it when I got on the bed and my mom took our picture (which ended up being the only picture taken that day). We went down to the holding area and Kyle and I waited for the time to come. They took me back first. I said hi/bye to my mom and Kyle's mom and then thankfully the Anesthesiologist gave me a ton of Versed (sedation medication). That is the last thing that I remember until I remember waking up but not being able to open my eyes but somebody saying that Brayden was out of surgery and was peeing. After hearing that, I went back to sleep for a while.
Brayden was in surgery for about 3 hours. They said the "cold time" for my kidney was only 10 min or so. They put the kidney into him and it started making urine immediately! Brayden went to the PICU and there is where the termoil began for Kyle and the rest of my family. For one, they got kicked out of the surgical waiting room because there were so many of them, then they ended up in what was supposed to be my room and the doctors closed the curtain on them. From what I am told, the first 12 hours were VERY touch and go for Brayden. The doctors wanted his blood pressure about what mine was so that the kidney didnt go into a shock sort of state or the blood vessels clot off. This was the main problem. His bp was very low. They put him on a drug to increase his bp but they couldnt give him to much because to much would have hurt the kidney too. They couldnt give him as much sedation as they needed to becuase the sedation and pain meds lower his blood pressure to. That is one thing that I am glad that I didnt see. I would have flipped out if I would have had to watch my baby struggle like he did. Luckily, he wont remember any of it.
My room was a whole other ordeal. I was supposed to be able to be in the PICU with Brayden. They have 2 rooms only seperated by a window that were specificly built for the transplant people. There was another sick child that ended up being sicker than he was supposed to be and so I wasnt able to be in that room. When I heard that news, I was pissed and scared and worried all in the same moment. I ended up on the transplant floor. The only good thing was that they did get me a video feed that was in my room so that I could see him at all times while I was in my room. I stayed until Friday and was discharged. They had said that I could stay as long as I needed to but the PICU had saved us a room off of the back of the PICU for us to stay in as long as we were there. It was like a mini hotel room with a hospital bed for me.
I got to my room about 5 pm (the delay was because of the room issue). By 6pm I had Kyle wheeling me down to see Buddy. It was really hard for me to see him like. At this point, I wasnt very trusting of the PICU nurses and there was alot of animosity between Kyle and the transplant people because of the tension times earlier. I saw him for about 30 min then had to go back to my room to rest. Kyle stayed with him until about midnight. Kyle was so good. I am so proud of him. He took wonderful care of me and Brayden the whole time.
The next day was mostly unremarkable until on Thursday, I think, when we got down to the PICU for the first time that day, his oxygen sats dropped. The monitor alarms were silenced and I happened to look up at them and saw that his sats were 75%. They started bagging him but couldnt get them back up. THIS was where I found out what if felt like to be a mother that couldnt do anything to help my baby boy. I flipped out..I backed up in my wheelchair and let them work but Im telling you, that was the worst feeling I have ever had.
He ended up having what we figured was a mucous plug in his left lung. On Xray his left lung was whited out (which ment his left lung was full of fluid and phlegm). For the next few days he got a bunch of breathing treatments and CPT (suction cups beating on his chest to loosen the gunk). We noticed that during his breathing treatments with Albuterol that his bp would drop to almost dangerous. It happened almost every time but we just thougtht it was just a fluke. One day that weekend, a Pulmonologist from East Tn Children's came over and did a Bronchoscopy (take a scope and look at his lungs) but couldnt get the scope down the breathing tube because it was so small. We were sitting there watching him and he asked for albuterol, the nurse Kelly told him that he dumped his pressure with albuterol but he didnt listen and put a whole huge dose down the tube and guess what....his bp went into the 50s. He was almost off of the medicine to bring up his bp but Kelly had to turn it to the maximum dose just to keep his bp up. It stayed low for almost 8 hours. During that 8 hours, his urine output dropped to almost nothing. Dr Malagon was in there watching it and when we gave more lasix (to make him pee more) and he didnt have any output, she went into panic mode. Our thought was that the kidney had clotted off becuase his bp had been so low. She ordered a ultrasound of the kidney and the transplant people brought in a dopplar (like they use to listen to a baby's heartbeat inside the uterus) and the kidney seemed to be okay. The US showed the same thing, the blood flow was perfect. I thought that maybe his foley catheter has maybe clogged up and that is why he didnt have any urine. I could feel his bladder and I told the transplant doc that but he said that wasnt it and wouldnt change the foley out. Dr Malagon (who is his regular doc and trusts me) thought the same thing. He went down for a Mag 3 scan (test to see how well the kidney is fuctioning) and it came back perfect and his bladder was FULL! When he got back, we changed the catheter and whataya know! Urine!!! I was so happy and pissed off it was rediculous.
After that it was mostly smooth sailing. His lung was clearing some and on Tuesday he was ready to come off of the vent but the doc that was there was a very conservitive guy and didnt take him off until Wednesday. FINALLY, after 3 hours of him fighting the tube because the uberconservative doc turned off the sedation way early! When the tube came out he did great! He cried but had no voice and then he saw his clothes line and reached up and grabbed it.
He needed very frequent breathing treatments to help with the swelling in his throat from the tube being there but on Friday we were planning to go home....Well, Friday morning got here and when we got to his room he was struggling to breath. We thought that maybe he just needed one more treatment and he would be okay....then he didnt get better and started getting worse. He looked like crap! It was one of the scariest times I have ever seen my baby. He was sick by even sick standards. Blood and sputum cultures were drawn and we assumed that he had a pneumonia. His temp had gone up slightly over the whole day and night before. Dr Malagon started him on some MAJOR antibiotics and we were in for atleast the weekend. During all of this his sats were down and so I put some oxygen on him again and low and behold he perked up and became a baby again instead of a blob of barely breathing kid.
He was on oxygen until Saturday night. By Sunday morning he was back to himself and playing in his crib. We thought we needed some "normal" so we put a blanket in the floor and got in the floor and played for a while. It was great!
On Monday, we came home. We got home about 2 pm and boy was it good to be home! The house was clean because my friend Wendi got her cleaning lady to come clean while we were gone. We were home, a family home again!
Since then it has been a blur!!! We have seen Dr Malagon twice a week but now we can go to seeing her every 2 weeks. She is so proud of how he is doing. On May 12th, he got his PD cath out and now he is cordless!!!!
He has learned so many things since transplant. The transformation is crazy!! He is talking more, more mobile and more aware of his life! He hasnt thrown up but a few times and at times he will eat actual baby food! Its crazy!!! He has gone to completely different meds and that is taking some getting used to but it is SOO much better than before!
We start physical therapy again on the 18th and I am going to make a prediction that he will be walking in 6 months! Maybe even earlier!!! Kyle went back to work yesterday and I go back on Monday.
Life is wonderful!
More updates as they happen!
