Quick post-op update

I was hoping that when I updated everyone, I could share good news. However, we are still in a tough spot. Lochlan was sent home after surgery on Thursday. Friday was a rough day with constant vomiting even on a continuous feed. No one would call him in a script for Zofran, and I was told by the Urologist that Zofran was only for chemo patients!? He had a great day yesterday until something clogged his vesicostomy. After going to the ER late last night, it miraculously started draining again. Yep, I was one of those parents. Today, he is still vomiting. I tried to go to work today and spun into a ditch. After getting pushed out, I found out my brake lines are leaking. My car is safely at the mechanic's garage now. Thank God for Jewish mechanics who are open on Sunday! If you are not already prayed out, please keep us in your thoughts. Adam and I are really trying to stay strong on very little sleep.

The Day Before Surgery

There are days when I feel like my work and home life are in perfect harmony. Today was not one of those days. I generally work 3 days per week and so far it has worked really well for my family. I love being an ER nurse, and I love that I can be home most days of the week. Today, I felt as though work was the wrong place for me. I felt vulnerable and emotional as soon as my alarm went off. Lochlan's vomiting is worse than ever, no one has had any sleep in days, my husband was grumpy with me this morning when I really needed a hug, and I was not looking forward to facing Lochlan's pre-op lab work results. Tomorrow is surgery day and I have a touch of PTSD from his past surgeries. They all have been nightmarish. He has screamed for hours with a terrible hoarse voice, ran fevers, and ran a dangerously high heart rate.

All day I felt as though every single task took double the amount of time and I was completely inept at finishing my responsibilities. By the the time I returned home 45 minutes late, I felt guilty for neglecting my children. Because I wasn't home to operate the pump, Lochlan vomited every last drop of his bolus feeds. My heart aches when Lochlan is screaming after vomiting all of the breast milk that I spend all day pumping. He cannot spare one calorie, especially since he will be npo for surgery tomorrow. Declan was acting out to get attention, and dinner needed to be cooked. I didn't even get to play with them tonight. By the time dinner was cooked, Lochlan was acting fussy, so I tried to settle him. I gave him a quick sip of the bottle after trying everything to settle him down. He drank ferociously because he must have been so dehydrated and thirsty from vomiting all day. I took the bottle away in an attempt to prevent him from vomiting. When I took the bottle away, he got very upset, and vomited all over the crib. Instead of having a complete melt down in front of my 2 year old, I handed the baby over to Adam, turned on Rudolph and piled all of my frustration on to this blog. I apologize. I write when I am down, which is probably why I do not write very often.

Urine big trouble.

In the past few weeks, Lochlan's urine stream has been slowly decreasing. He has been grunting and bearing down only to have small dribbles of urine to come out. I suspect that the discomfort is the reason why he has been vomiting his bolus feeds since having his catheter removed 2 weeks ago. I have a hard time accepting that there is nothing I can do for him right now. The only saving grace is that he seems happy in between vomiting and peeing. 

I was really hoping that we were going to hear some good news today, but alas we did not. We have become so accustomed to bad news that we sort of expect it and cope with it quickly. The urologist told us that Lochlan's urethra could not be reconstructed until he is much older and bigger. In the meantime, he will need a suprapubic vesicostomy to let the urine pass without obstruction. It would mean a surgical opening above his pubic bone to allow the urine to pass freely into his diaper. 

The earliest that Boston can do the surgery is the 17th. It's only 10 days, but 10 days of poor sleeping, vomiting and pure misery can feel like an eternity. Because this is a one night routine surgery, we are unsure if we necessarily need to be in Boston for it. Adam and I decided that if the surgery can be done sooner in Albany, then we shouldn't uproot the kids and take them to Boston. The urologist in Albany tends to be extremely busy all of the time, so I doubt that we will be able to have surgery sooner in Albany.

Part of me is relieved that the reconstruction of his urethra will be delayed because it's not as straight forward as a vesicostomy. It can mean a number of surgeries with recurrent strictures and no guarantee that it would be a successful surgery. I almost feel that we should wait until Lochlan is old enough to make his own decision to have the reconstruction. He has been through a lot, and at this point, where he urinates from is cosmetic.

Meet Lochlan

Lochlan was born on May 16, 2013, 19.5in 7lbs 4oz. I was induced at 40 weeks and 2 days because Lochlan's umbilical cord only had 2 vessels. At 19 weeks gestation, during the ultrasound in which we were to find out if we were having a boy or girl, we were alerted to a handful of "markers" that led the doctors to believe that there was something seriously wrong with our pregnancy. Lochlan had a 2 vessel cord, a second superior vena cava in the heart, multiple cysts on the right kidney, echogenic foci in the heart, and choroid plexus cysts in the brain. I was told that there was a great likelihood that our baby could have a trisomy, but the only way to tell would be to undergo a amniocentesis. Adam and I agreed wholeheartedly that termination would not be an option for us, so we proceeded with the pregnancy without an amniocentesis. Together we made a concerted effort to hope and pray for Lochlan to be healthy, but with one functioning kidney. We went through many emotions during the pregnancy, but we did stay as positive as possible.

Lochlan was born at 3 in the afternoon, was briefly looked over by a nurse, and was handed over to breast feed. Lochlan cluster fed on and off until 9pm when he fell asleep and was taken to the nursery. I noted that he was fussy, but other than that, no one suspected any problems. Lochlan would not nurse at 4am the next morning, so checked to see if he had pooped. When I inspected his bottom, I realized he had no anus. He was quickly rushed to NICU at Albany Medical Center.

Upon arrival, Lochlan was diagnosed with VACTERL association.
Vertebrae: fused coccyx that should never cause him any problems.
Anus: Imperforate anus- bowel formed fistula with bladder.
Cardiac: Second superior vena cava, PFO.
No Tracheal or Esophageal problems (that we know of).
Renal: Non-functioning multicystic right kidney, dysplastic left kidney, chronic renal failure, and severe stricture of the urethra.

Lochlan initally had a colostomy placed, had anoplasty at 3.5 months, and a colostomy reversal a few weeks ago. Lochlan's renal failure has been his greatest medical problem that has had a profound cascade effect on his overall health. He is chronically anemic and gets Procrit injections weekly. He has a poor appetite and does not nurse nor eat much orally, so he has a feeding tube. Because of hormonal imbalances and poor caloric intake, he does not grow well. He is below the 1st percentile on the growth chart. Although he still urinates, his left kidney continues to struggle. He does not concentrate his urine and needs a salt substitute. He also takes calcitriol to aid with parathyroid function. Although none of the doctors have a crystal ball, they are fairly certain that he will need a transplant by his 2nd birthday. Lochlan's narrow urethra is putting further strain on his kidney causing severe vesicoureteral reflux. Tomorrow, we travel to Boston Children's Hospital to see one the best Transplant Urologists in the world.

We were introduced to the great BCH in August. Before meeting the transplant team, Adam and I were faced with a decision of end of life care or continuing on in hopes of Lochlan receiving a donor kidney. Boston restored our hope that Lochlan will someday live a somewhat healthy life. Because Adam and I do not match Lochlan's blood type, we will not be able to donate a kidney to him. His best chance for receiving a kidney before he needs dialysis is to find a good samaritan who is willing to donate a kidney. The donor must have a blood type O and stellar health. Once Lochlan has reached 65cm (about 26in.), and his urine output starts to deteriorate, BCH will be able to transplant an adult kidney into him. If he receives a kidney from a live donor, the kidney could last him 20 years. How amazing is that!?