The end to a really crappy week

Where do I begin?  It's been another week from hell as we struggle to get Joshua on the path to healing from his gastrointestinal issues.  With his reconnection surgery scheduled on Thursday, preparations began on Wednesday to get him ready.  He was taken off milk at 9 am and was only allowed 10 mL of Pedialyte every 3 hours up until midnight.  Then he was not allowed anything besides his IV fluids.  Josh's blood was drawn and tested okay for surgery without any additional transfusions.  On the morning of the big day, I comforted Josh as his isolette was readied for transport.

During the surgery, Josh's intestines would be reconnected, the doctor would check for and clear any strictures formed from scar tissue, and his original gastroschisis closure site would be inspected.  We had been told to expect a 1-2 hour surgery.  We received a call from the OR an hour into surgery and were told that everything was going according to plan.  I started to get a queasy feeling in my stomach when the clock ticked off hour 3, something did not feel right.  When the surgeon came to take us to the family consult room, I was both relieved and terrified by what she might say.  The news hit me like a ton of bricks - all of the small intestine below Josh's ostomy up to his colon was strictured scar tissue and had to be removed.  An additional 27 cm of small bowel gone plus the 25 cm he lost in the resection surgery last month mean Josh is now considered "short gut".  Short gut is a term that strikes crazy fear in the parents of NICU infants.  Short gut usually happens because of a perforated bowel caused by NEC (necrotizing enterocolitis) due to premature delivery or by malrotation with volvulus as is the case with Josh.  While the cause may differ, the result does not: the body is in jeopardy of not being capable of absorbing the nutrients required to thrive due to the decreased intestinal surface area experienced with loss of bowel.  Like most conditions, there is a range of severity based on how much healthy bowel is left (measured in cm).  We are still unclear how much healthy small bowel Joshua has left.  We know he has lost 52 cm including part of his jejunum, the entire ileum, and the ileocecal valve.  What we aren't clear on and what we hope to clarify with the surgeon very soon is what the measurement of his healthy small bowel is.  We know he was able to retain his entire large intestine including the important ascending colon section which will slowly adapt to take the place of the missing ileum.  This is one small piece of good news in a whole world of craptastic revelations. 

Since the surgery we have been trying to process this latest disaster and I have found it to be the most difficult part of this whole hellacious journey.  We are doing everything the doctors tell us to and each surgery seems to bring a worse prognosis.  For the millionth time I think about how unbelievably unfair this all is to Joshua.  Instead of being reconnected and working back up to full feeds in six weeks, we are now facing up to another six months in the NICU as Josh's intestines slowly adapt to absorbing enough nutrients to grow and go home.  He will more than likely go home on continuous feeds through a feeding tube down his nose and may even come home with a central line in his chest to continue delivering IV nutrition.  It all depends on how well Josh's remaining bowel responds to feeds and we will not know this for a long time. 

People keep asking me, "How are YOU doing?".  The answer is I have no idea.  I am trying to emotionally numb myself from the pain, fear, and panic that keeps getting worse with each passing month since Joshua's birth.  We now have to worry about the long term effects of his current condition and doctors are no longer quick to point out that you will never know he had an issue a year from now.  The truth is I am tired of trying to answer the same questions over and over when I don't feel like I have any answers at all. 

For now we focus on Joshua's recovery from the surgery.  He was extubated yesterday, but his breathing was very labored and he was eventually reintubated.  Watching and listening to Josh struggle to breathe was terribly upsetting.  He was given an epinephrine breathing treatment and a steroid injection to bring down the swelling in his airway.  Josh is older and stronger this time around and seems to be more aware of what is happening to him and how uncomfortable he is.  The nurses have had trouble managing his pain, but finally found the right combination of morphine, Ativan, and Toradol.  He seems to be resting comfortably since yesterday evening.  We should be moving back to the B side of the NICU by the end of the week so I will be able to live with Josh again.  I miss holding and taking care of him so much!