It has been a while since my last post, but life has been crazy. With a 4 year old going to preschool and very active 2 year old and Ezekiel, life just goes 100 miles a minute. We have been trying to adjust to my work schedule, working 7p-7a in the NICU on the weekends. It has been a very rough transition for the girls. They were used to me putting them to bed every night, or at least know that I am there for the last 4 years. They have been troopers though. We have some rough times but we are getting through it. We have to.
As for Ezekiel, things have been going very smoothly until the end of August. He was growing very well, better than expected and doing well with physical therapy, which we have twice a month. At the end of August, one morning we woke up and his Peritoneal Dialysis Catheter was leaking around the insertion site. We called the Dialysis clinic right away and told us that we needed to come in so they can look at it. We then went straight to the hospital and got admitted. Of course we got admitted to the hospital on Friday so nothing happened over the weekend. We continued to do the same dialysis routine there as we would have at home. They drew many labs and sent cultures of everything to make sure he didn’t have any infection. We new he had to go into surgery, just didn’t know when or how long we would need to stay.
Wednesday was the day of surgery. He couldn’t eat past midnight and our surgery was supposed to be scheduled that morning but of course that didn’t happen. He didn’t go to surgery until that afternoon. I thought we would have a very cranky boy on our hands from not eating but he didn’t really care. Got a little fussy but not bad at all.
Surgery lasted for about 2 hours. They placed a new PD catheter and our urologist did an exploratory look around to see if she could insert a catheter into his urethra in hopes to find out the functionality of his bladder. The PD catheter placement went well. We did not get to find out his bladder function, however she was able to thread the guide wire through his urethra, which we were not able to do when he was first born.
After we had our surgery the goal was to let the catheter sit as long as we could without doing full dialysis. Two full weeks is the optimal time they would like to wait for healing. Every day the PD nurse would come and irrigate the new catheter. It leaked the first day after surgery and we had to stop right away with the irrigation but the following days it only leaked a little. We could tell Ezekiel was uncomfortable whenever we had to change the dressing, but he did well.
During our stay, he also got a urinary tract infection. Hospitals are no fun, they are full of germs that we don’t have any where else. He ended up having pseudomonas in his urine, how he got that I have no idea. They tried several times to get an IV in him for IV antibiotics. They litteraly tired everywhere. With all of the different attempts to draw labs and now IV sticks, there were not many options. They finally got an IV in his head. It fortunately stayed in for awhile but ended up having 2 different IV’s in his head by the time we left.
Fortunately, we were able to wait a little over a full week to then use the PD catheter to it’s full use. We were stuck there in the hospital but it was for a good reason. Our neprohrologist thought we would have had to start using it sooner than we did. Every day though we had to get lab work drawn. They would wake him up at 4 am every morning to stick him multiple times.
After 16 days in the hospital we got to go home! It was nice to be a normal family and get our routine back in order.
Since then were were doing well, slowing gaining all the weight we lost during the hospital stay and waiting for our trip to Cincinnati Children's Hospital in Ohio. Cincinnati Children’s is one of the best places he could be for his kidney transplant and our insurance has agreed to cover it as an in-network hospital for his transplant. We were all very very happy about this. Within a couple of weeks our trip was planned out for us. In October we would be spending 3 days full of evaluation appointments and sonograms with all the specialists that would be involved in his care.
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