Seattle, WA, USA

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One Step Forward, Two Steps Back

July 29, 2018

So what's new with you? 

We have had a crazy couple of weeks here in Seattle so let me recap to get everyone on the same page...

Two weeks ago we were at Children's for a scheduled CT scan of Hudson's portal vein. It was an outpatient procedure and we were home by noon. Later on that afternoon, I started seeing black tar in Hudson's stool. We called the Transplant team and after some back and forth, it was determined that we should go to the ER.

 While in the ER, we ran labs and stool samples and it was determined that Hudson was bleeding internally. We were admitted around midnight and started a blood transfusion around 5am to try and get his hemoglobin and hematocrit (the measurement of his blood volume and red blood cell count) to go up. Later on the following morning, the doctors performed a scope procedure to try and locate where the bleed was happening. They explored his entire upper GI tract and were unable to find any source of the bleed. This led them to believe the bleed was in his small intestine, in a place that the scope could not reach and was a direct result of his narrowing portal vein. The only way this theory could be proven was by another exploratory procedure, scheduled for the following day. 

 On Friday, Hudson underwent an Interventional Radiology procedure to balloon his narrowing portal vein (aka portal vein stenosis). The doctors found the narrowing to be much more severe than the previous imaging and labs had shown.

Further imagining of Hudson's small intestine - the area that the scope could not reach the day before - showed the effects of the increased blood pressure from the narrowing portal vein. The increased pressure (think of how the water pressure changes when you put your finger on a hose) caused the vessels to be enlarged and seep blood. Result: internal bleeding that they had suspected. 

 The imaging also showed that as soon as the portal vein was ballooned, the vessels almost immediately decompressed and stop bleeding.

As a precaution, Hudson was placed on blood thinners. This will ensure good blood flow through the portal vein and minimize the risk of clots. Unfortunately, the best way to administer these blood thinners are via a shot twice a day.

It is a delicate balance between promoting good blood flow (i.e. blood thinners) and treating the existing bleed (i.e. making sure the bleed that they just stopped didn't start again). We spent the following days in the hospital getting the blood thinner dose perfected and continuing to monitor Hudson's labs. 

 We were discharged with two new meds. A blood thinner called Lovenox and an antacid. Another symptom of a portal vein stenosis is gastritis - inflammation of the stomach lining. Hopefully these are both temporary. 

We have a follow up ultrasound on Thursday to see how his portal vein is doing. Everyone's hope is the flow continues to be good and the vein is not beginning to narrow again. If it is, we will discuss the best course of action with Hudson's doctors. This includes the possibility of ballooning again, placing a stent or if miracles do exist, nothing at all. Stay tuned. 

 

 

 

Intermission 

It is easy to objectively tell you what is going on. It is easy to give you the stats, the med count and the next steps. What is difficult is explaining what all of this means for Hudson, me, Morgan and our family. 

It has taken me a couple of days to wrap my head around this past week so I could update and communicate to you all. It wasn't that I needed time to understand what had happened. I completely understand what happened and why. It's a little unsettling how quickly and easily I was able to slip back into the hospital mom role and be comfortable there. 

It wasn't that I was looking to process and make sense of what had happened. Since day one, Morgan and I have agreed to ask, "what's the solution?" as opposed to "why?" That mentality has made processing our journey easier. 

 

I just needed a couple of days to feel. And Mourn. 

 

As a parent of a chronically ill child, you look for the light at the end of the tunnel. The Hail Mary that will turn your child's life in a different direction. For us, transplant day was that light.  Pre-transplant, our world revolved around the words 'when' and 'after.' "when Hudson has his new liver, we're going to do this"," after transplant, Hudson is going to be able to do that," "after Hudson has his new liver, our family will have a normal life."  We became so dependent on those two words that we didn't even notice it had become engrained into our every day thinking. By doing this, we unintentionally developed this unrealistic expectation that as soon as transplant happened, we would never have to use the words 'when' or 'after' again.  

For the most part, we haven't had to use either of those words over the past 12 months. We were in a honeymoon phase, free of adverbs and prepositions. Until last week. Last week was when our honeymoon bubble burst. Not only did those two words come creeping back, they were accompanied by a new word -  'if.' 

"If this happens, we would need to do this," "If Hudson is feeling okay, we can meet you guys there." It's this new 'if' word that has triggered this mourning period. The word 'if' is conditional and who can plan a future based on conditions? 

We knew going into transplant that it wasn't a cure. It was trading one disease for another. We accepted that. However, through everything, we remained optimistic that Hudson was thriving and defying odds. 

So, I have spent the past couple of days mourning our optimism. I am mourning that for 12 months, we chose to believe we were the exception to the rule. I am now grieving the fact that we are no longer the exception - we are the rule. We are have now joined the list of post-transplant statistics. 

Let me be clear - mourning our optimism is NOT the same as giving up. We still know that Hudson and our family will continue to live our best lives - this is a small set back and has a manageable solution. 

I strive to be as honest and authentic with our journey as possible. Part of that is and taking time to identify, feel and process our journey. We are constantly reminded of our amazing community - even if we remain silent for a short period of time. Thank you for your continued support, patience and love. 

 

XOXO, 

Jordan, Morgan, Hudson, Dude & Jax 

 

 

 

 

 

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