#kidneybaby, part 3

Surgeries 3-7

So tomorrow we’re doing our taxes and then going baby-proof shopping so let me try to bang this out today.

Two days after getting home, we followed up with the urologist. After getting bloodwork and an ultrasound done, we realized Brennan’s right kidney was backing up more than usual. We were told that this was not a good sign and in some cases, the “good” kidney could not compensate for the bad one at such a young age. We were scheduled to go in on May 4th to get a stint placed that ran from his right kidney down the ureter. He wasn’t sure if that would work, but that was the least invasive option (they didn’t need to cut open his whole stomach again).

We were rightfully concerned and took Brennan to our new church to hopefully get him baptized. We had not taken the class, nor gone to more than three masses or so since we’d been down in Austin for most of our days since arriving in March. Thankfully, our wonderful priest, Fr. Chris, had mercy on our family and understood the severity of Brennan’s situation; he was baptized right then and there. Now while most people applauded this choice (as if it was theirs to comment on either way…), we got a few people (even family members) who criticized us saying that our child was not “sick enough” or “actually dying” to warrant such an unconventional baptism, and how dare I post that on Instagram. I will quickly digress to say here, publicly, that I will NEVER apologize for or minimize the severity of what Brennan, and by extension, Liam and I, went through. If you are upset by this unfolding of events enough to tell me “it’s not that bad” or feel the need tell me that your friend’s mom’s cousin’s dad’s kid went through something MUCH WORSE than I will kindly ignore you (trying to stop the whole nastiness cycle remember?!). It’s like, using your brain before opening your mouth. Novel…

So May 4th came and went, and we were told to come back for bloodwork and an ultrasound on the 16th. Those ten days at home were so glorious. Unfortunately Liam’s work schedule did not allow him to be there on either the 4th or go to check in on the 16th (and spoiler alert: he misses all surgeries from this point on but he did visit as much as he could!). So baby and I made the 70 mile trek ourselves. We went in for an early morning ultrasound and didn’t even need the doctor to interpret the results. The right kidney was still huge, and now the bladder was looking pretty awful. We were kept in the office until we got a hospital room for emergency bladder surgery that day. Thankfully, we were now being treated at Dell Children’s hospital—a wonderful, wonderful place with kind and loving staff. Anyways, if the bladder withheld anymore stress, it could be damaged forever. Any woman whose been pregnant can sympathize on what an awful experience that would be! This surgery (his 4th if you’ve already lost count!) gave him a vesecostomy—a hole in his bladder. This allowed the right kidney, still stinted, to drain into a bladder that continuously drained, similar to his left ureterostomy. I was devastated to put him back in such major surgery, but knew it was the right thing.

We were then home for two lovely weeks where we celebrated our first wedding anniversary and marveled in our holey (literally) baby. But all good things come to an end. On Sunday, the 29th, I noticed that Brennan’s diapers were looking sort of green… He was also really lethargic. It was night time and his morning temperature had been okay, but we decided to check anyway—102 and rising. I was devastated, but packed a bag of a few belongings and began our drive to Dell Children’s around 10pm. We got there a little after 11 and they admitted us right away (I had called the after-hours urology line).  I knew this wasn’t good. After a round of urine, blood, and lumbar cultures, we settled in to “sleep” around 4am. Surprisingly, Brennan never had a fever other than that first night, but the culture results absolutely sucked: pseudomonas. Apparently it is rare for this bug to be found in the urinary tract, and in a barely two month old baby could only be treated via IV antibiotics. So it was back under anesthesia to get a central line inserted so that we could administer the antibiotics with the help of a home-nurse. Of course this was all a process that put us well into early June so it was at Dell Children’s that we spent my 23rd birthday. Our care team got me a cake that day and sang to me, but even better perhaps, we saw Brennan’s first social smile and his creatinine level had FINALLY dropped to below 1. [A creatinine level of below 1 is significant due to the 1 under 1 rule in the kidney world: if a baby’s level is under 1 by his/her first birthday, then the likelihood of needing a kidney transplant in the first decade of life decreases dramatically.] Brennan was at 0.9 but we took that! Small victories, friends.

So we went home with our PICC line and were pretty much on quarantine. That didn’t change Liam’s schedule, but it left me stuck in the house with a baby. We sometimes snuck out to church and of course, to the doctor. But unfortunately continuing cultures showed the pseudomonas was not being easily fought. Brennan’s care team thought the internal stint in his right kidney could be the problem. The fix: take it out—a super easy and non-invasive procedure similar to what was done on May 4th

So on June 24th we get his routine ultrasound. She tells us all looks great, though some of those pictures were a little iffy. Not our usual sonographer but we figured no harm no foul.  Well actually there was harm and foul… We went in for his scheduled stint removed on June 28th. After three hours in the hospital waiting room for a should-have-been 40 minute procedure, we were finally called back by the doc with more devastating news—the ultrasound tech mistook her findings that the stint was, indeed, in place. It had actually migrated up and was stuck in his kidney, and likely, full of pseudomonas. We were scheduled for Brennan’s 7th and most invasive surgery just two days later. They would have to cut in to the kidney which was dangerous considering this was his “good” kidney. If anything went wrong we’d be back to where we began: kidney failure.  To say we were pissed is a vast understatement.

But what can ya do? Just trudge along and be freaking happy for your unusually happy baby. Although I cried and cried and ate so many tacos through tears, June 30th actually turned out to be a huge blessing in disguise. The procedure went extremely well, I am certain due to the prayers you all covered us with (thanks!). We found that the entire right kidney was filled with “green sludge” and the ureter was so backed up parts were dying and it measured over two feet long when stretched out (much longer than the average adults’). The urologist drained the kidney, cut out the dead ureter and placed another ureterostomy in his right side. After a few days in recovery, his bloodwork returned to normal (or normal for Brennan) and we were released on July 3rd.

By the grace of our good, good God (whose decided to put our seemingly eternal suffering on hold for awhile) we have been home from the hospital ever since, with just our weekly visits to go. Those visits then turned to monthly, and now, to every three months. His creatinine baselined at about 0.8 which is 50% kidney function. Brennan is an active 10 month old who crawls and tries to pull up on everything. He says bababababa, mamama, mob, and bob. He is actually the happiest baby I have ever met and every day Liam and I look at him in complete awe of the little dude he’s becoming. We have at least 2 more surgeries to go in 2018 but enjoy each day at home where, when the Army allows, we can be a family.

You have certainly not heard the last of #kidneybaby and while that hurts our hearts a little, we have always known that our Lord and His Most Holy Mother are closest to us in our suffering. St. Theresa of Calcutta is known for saying that we should thank God for our pain and our sorrows, as suffering is a kiss from Jesus Christ Himself.

…But we’re hoping he keeps his lips to Himself in 2017. =P

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