In honor of football season, Iet us kick off the update with some stats:
Current location: HOME (Seattle, WA)
Total number of days in the hospital: 40
Total number of surgeries: 3
Total number of Interventional Radiology: 4
Current weight: 7.09 kgs or 15.63 lbs
Current height: 74 cm or 29.13 in
Current number of tubes: 2 (NG and bile drain)
Current number of meds: 14
Total number of times we have watched the movie Trolls: 647
When you feel like you have been here before...
We know the feeling. Hudson's third, and hopefully final surgery, went well. Reminder: after Hudson's initial transplant surgery, doctors were concerned that his bile duct was essentially healing shut. His bilirubin shot up and he was getting fevers indicating that the duct was in fact obstructed. They attempted several IR procedures to try and pass a catheter all the way through the duct to avoid surgery but they were unsuccessful. Hudson had his reconstruction surgery almost exactly a month post transplant.
We were not able however to declare the reconstruction surgery a success for almost a week.
Why? Doctors wanted to give the bile duct a week to recover from surgery and then perform a contrast image scan (one of the Interventional Radiology procedures) to make sure the bile was flowing as it should and no bile was leaking from the connection site. Once imaging was complete, we were able to take a deep breath and dare I say, relax a little.
We were scheduled to be discharged on Thursday, Aug, 17th (once we determined the surgery was a success) however, Hudson started throwing up and not tolerating his feeds. This meant we had to stay in the hospital one more night to make sure the vomiting had nothing to do with his transplant and surgeries. Doctors also connected the bile drain again and as soon as the duct had assistance in draining, Hudson perked back up and we were able to go home on Friday, Aug. 18th.
Warning: do not go beyond this point if you do not want to see pictures of Hudson's old liver.
Objects in the mirror may be more unhealthy than they appear
I was able to visit pathology and see Hudson's old liver (after it had been injected with chemicals that preserve it) We were also provided pictures of the liver immediately after it was removed from Hudson during transplant (pictures from the OR).
There are three key things to highlight when looking at an unhealthy liver - specifically Hudson's:
Color: Looking at the pictures, you can see a white marbling throughout the liver. The white marbling is damage - almost like scar tissue. Perspective: a healthy liver doesn't have this and should not look like a steak.
Texture: As damage occurs within the liver, it creates ridges. You can see the ridges within the liver in the preserved dissected sections. Perspective: a healthy liver is smooth without any ridges.
Shape/Size: The shape of Hudson's liver was unique and as it continued to be damaged, it became swollen and inflamed. Hudson's liver weighed a little over a pound which accounted for a little more than 5% of his total weight. Perspective: a "normal" liver in an infant is about one-eighteenth of the infant's total weight.
Don't understand the hype of the eclipse?
Seems Hudson wasn't too enthused by it either. Maybe he will appreciate it more in 2024. Outlook not good.
We now go into the management phase of life.
For the coming months, we will be doing blood draws and clinic twice a week. This will typically be blood draws on Monday/Wednesday and clinic on Tuesday/Thursday. Those labs and clinic visits will result in frequent medication and dose adjustments until we find the perfect "Hudson cocktail" specific to his body and how it reacts and processes the medications.
Hudson still has his bile drain. The goal is to cap the bile drain during clinic in the coming weeks and then completely remove the catheter (that is assisting the liver in draining bile) in 5 weeks. We will have to check into the hospital for this procedure and have to stay at least one night.
Getting back into shape
We begin OT/PT again to continue to help Hudson with his developmental milestones. His biggest obstacles at the moment are healing abdominal muscles (due to the surgeries) and being a little right-heavy from Trevor's liver.
Winter is coming
Getting Hudson to gain weight is a priority as well. We are allowing him to try all types of foods while getting his daily calories from the formula being fed to him via NG tube. The goals is that he learns to love food and gets nice and chunky for winter. Currently, Hudson's favorites are corn, avocado and corn puffs. Hudson has also decided that he is above bottles and now drinks from a straw.
Apple juice is the drink of choice and will be on tap at the Hill household for as long as he wants.
Trevor is doing wonderfully and isn't needed back in Seattle until his 6 month check up. Trevor, Katie, Molly and Claire are settling into their new home in Alexandria, VA and really loving the area so far. Trevor is enjoying school and Katie and the girls have been having fun exploring the trails around their house and going to the zoo.
Entering the management chapter of this journey signifies less obvious milestones (such as surgeries) and more attention to detail and small victories. It has been amazing being home however, I would be lying if I didn't admit that it also brings some additional challenges that we are quickly learning to handle. Let's call it nurse withdrawal. I am confident that in the coming weeks, the new routines will become second nature. Until then, here's to 'improvement opportunities' and caffeine.
Jordan, Morgan, Hudson, Dude and Jax