3-2-1 EXTUBATION!

Today was a pretty good day......to start. We started the day with our normal routine by calling the NICU for an update on his over night condition. The nurse stated that he passed his trial extubation (removal of the breathing tube) period and the NICU doctors may attempt it today. We arrived to the hospital around 11:30 today and the plan to extubate became an official order. While I knelt down to hold Vanessa’s hand to calm my nerves, doctors, nurses, and respiratory therapists created a small huddle around his bassinet in preparation for this event. Having the support of our parents around us to buffer our nerves, the tube came out and a few struggling breaths and faint cry’s were observed. OH MY GOODNESS... this is a day we have been waiting for. Though they were very faint it was a joy to hear some sort of cry or wince from our baby boy. After a few hours Channing began struggling with breathing and a high flow nasal cannula replaced the normal neonate sized cannula he was originally on post extbation. Talks about putting him on CPAP or possibly reintubating him was mentioned because of his condition of being a premature baby with ARPKD.
Well, 4:30 hit, Channing began to show signs of severe weakness and his temperature was close to 33.5 degrees Celsius (92.3 ferinheit) his doctors evaluated him and consulted other care teams for over two hours to come to some type of conclusion of what was causing this down turn. A possible hypothesis was that he could have an infection somewhere. Doctors ordered to have cultures from all wound sites, mostly all the internal areas established during his OR proscedures. As if Vanessa and I are not stressed enough, we both broke out in tears as we are slowly growing tired from all of the stress. We do however, stay positive, but are so worried about our little baby boy that we have wished and prayed for, for over 4 years.
To sum it up quickly. A CPAP machine is currently being used which has significantly helped with his breathing and his expiration levels of carbon dioxide. If this was his issue, it still does not explain his low temperature. Cultures to test for infection are currently being evaluated in a lab, in the meantime a choice of antibiotics was made and given to him in small dose to proactively fight an infection if there happens to be one; let’s hope not! Antibiotics are challenging in his case are many are metabolized by the kidneys--he doesn’t have any.
We left tonight in dispare, tearing up has we left his room. We know he is in good hands as the care team is working around the clock to care for our little Superman. We are getting tired of being tired. We hope for the best for our little one. This entire process is not natural for new parents, but we are embracing the journey Channing has blessed us with.
We are glad you all near and far are staying informed by our hopeful daily updates.  Thank you for the continuous support!!

Good night all.

Channing is a week old today

Let’s just say it has been one hell of a week!  It has come and has gone as quick as a blink of an eye.  We went from evaluation and treatment in women’s triage to giving birth to our son in the OR.  Following that a quick recovery period in PACU as our little Superman was  evaluated and treated for his condition at birth, ARPKD.  As Vanessa was admitted for post op recovery, our little man was transported to the NICU.  With much effort on my behalf, I tried to create a balancing act, a teeter-totter if you will, of care for Vanessa and Channing.  At first it was a struggle, but I managed to figure out my roles in both places--separate floors by the way. Vanessa’s recovery in the hospital lasted 4 days which helped to be “close” to Channing.  Due to the holiday (Thanksgiving) she was discharged without a breast pump and was given hand pumps for her first night home.  The following tangent is reader discretion advised....Excited as a kid at Christmas, she unwrapped her gift from the hospital, put them together by following directions, and began pumping alone in our room.  Judging their design I got to thinking she was going to need some assistance with these new... appliances.  I knocked on the door to check in with their performance, it was not good.  I kindly asked to enter, "I need your help with this," she said.  Looking at them again, essentially a squirt bottle sized "appliance" with a suction cup at the end, I knelt down and began pulling the trigger as she held them in place... for 20...full.....minutes.  We have since voiced and acted out this story several times as we know that laughter is good medicine.  As we new parents learn our daily routine we know that we will have a lot more stories like these to tell.

Back to "The RHOADS to success." Vanessa and I call every morning to get an update on his over night conditions, get ready for the day and head to his bedside to be with him with our family by our side.  After some hours of talking (reading) to him, touching him, and taking a part in his care, we leave for the day.  Leaving is the hardest thing to do, but we know we have to take care of ourselves so we can take care of him.

His care team still has the challenge of when to start dialysis, much deliberation between pediatric surgery and Nephrology teams will take place in the near future. He remains on Total Parenteral Nutrition TPN--and a close eye on potassium is managed.  However, he is tolerating small doses of breast milk via nasogastric feeding. The wait for healing and the use of dialysis is carefully measured, the longer the wait to use it the better.  Time will tell when he will need to be dialyzed.

Among many lessons, the first week of Channing’s life as taught his mom and dad to dwell on the beauty of life as each day is a gift.
Happy One Week Chan Man!

Parade to the operating room

Yesterday, November 26th, 2018 other than his date of birth this was Channing’s biggest day to date--his surgery date.  Vanessa and I arrived early and our parents followed.  When we arrived, we saw his abdomen was more rigid and distended as his kidneys continued to grow in size.  Since the early days in August we knew this day was coming and we prepped for it as much as we could.  Since he was the second case of the day, his OR time was slightly delayed--its typically how the OR works.  Anesthesia and other staff discussed the surgery and how it would be performed.  After lengthy discussions with the staff involved in his care in the OR, someone opened up the flood gates of emotions.  Family gathered together as we watched Channing’s parade depart for the OR around 12 pm. His room in the NICU was eerily quiet without the sounds of the monitors and the smooth "breathing" sounds of his ventilator.  We were updated periodically though the multiple procedures that were occurring that day:  Broviac line placement, a now known bilateral nephrectomy (both kidneys), and the peritoneal dialysis catheter placement. All of which took place in that order. We all awaited his arrival for many hours casually being normal of creating general discussion of daily life and laughter--this is good medicine for all involved.  We continually kept thinking and praying for all involved with his care.  The last stitch was placed of his dialysis catheter we were notified that his promenade would be on his way shortly.  Us newly badged parents could not wait any longer to see our boy!  As he arrived at 8:30 pm with a slew of medical professionals, the surgeon that performed the surgery approached us with the utmost care and concern.  He methodically delivered what occurred in the OR and ended his statements as "Channing did very well." He he turned quietly and left the room.  This doctor just performed a miracle surgery, and treated it as another day at the office--amazing.

Getting Channing stable after the OR was a bit of a challenge for the NICU doctors and nurses, however with some time he bounced back and started to perform well.  A line, arterial line, to read blood pressure during the procedures was pulled out.  The area clotted off just fine, however the pulse in his leg below where the line was placed had a pulse but was weak.  A Doppler exam was done and slowly improved.  A chest X-ray was ordered to confirm his breathing tube placement;  this is always performed after transport to and from different locations. Since I work on that floor I know many of the technologists, I didn’t know this guy.  He was new, he recognized me and I think I made him a bit nervous.  He performed well under pressure. :)
We were finally able to get a look at our amazing boy, Channing.  We were impressed by his strength and quickly learned were the memories of this day would show for years to come.  He has a small incision on his right upper chest for the broviac line,  a front to back incision on each side (below the level of the belly button) for the nephrectomies, and a small incision on the right side next to his belly button for the dialysis catheter.  He is our little Superman!  He has abdomen scars to match his mom and dad.  Mom: C-section Dad: Appendectomy, and Channing well he out does us all.
For a summary of his future.  The incision for the dialysis catheter has to heal, 4 weeks according to pediatric surgery, however Nephrology (kidney doctors) would like to use it sooner.  Time will tell as these two care teams discuss his care.  Moreover, he will remain in the NICU for at least 3 months, if not longer.  This is essentially time for healing and moving him from nurse injection dialysis fluids to a machine that does it for him.

We continue to see signs of hope.  This is one of them from outside of our house on the sidewalk.







First diaper change and feeding.  We are slowly learning and accepting our new normal.

Quiet night

Last night was a difficult night.  As we prepared for Chan mans big day, we left the hospital without our most prized possession.  This is the hardest moment to accept so far.  Though our house is filled with amazing love and support from our parents, these new parents remain lost and empty. No midnight cries, diaper changes or feedings were performed—it’s quiet as it was before his gracious birth.

His procedure(s) are today, praying for strength for the care teams involved and for baby boy, Channing.

Preparing for Channing's Big Day

Vanessa finally got some rest last night as my air headed stunt double did not bother her in the middle of the night.  I got some much-needed rest too!

Morning OB rounds came early for Vanessa, the meeting was full of post-partum information before departing home.  However, we both ask the question, "where is home?" we are currently residing in two places now.  Our house has a welcoming atmosphere that our parents continuously create.  Our second, Channing’s Presidential suite in the NICU, a room with some space for a bassinet, monitors, a vent for breathing assistance, and a couch for us new parents to eventually sleep on to be by his side.

 During Vanessa’s stay I saw a painting of the Mackinac Bridge hanging outside her room, for you East Coasters, check out the Mighty Mac bridge.  This struck me emotionally since we got engaged at the beginning of a bridge over the Huron River at Gallup Park in Ann Arbor. As I stuttered over my words asking here to marry me, I referred to this bridge as "The Bridge of a Lifetime."  As we continue to cross this "bridge of a life time," it is these little signs of positivity that pop up and carry me (us) through this painful and emotional struggle.

Channing’s kidneys continue to grow at a rapid rate and his abdomen has become very distended and rigid.  It is amazing what two or even one day can make with this disease.  However, even though his kidneys continue to grow, a little bit of urine has drained from his Foley catheter that is placed in his bladder.  This is a positive sign, however it may or may not be enough to save a kidney.  Their function is being overcome by the cysts that continue to grow in size.  This morning Vanessa, family and I were able to witness rounds for Channing.  This is where a huddle of doctors gather in his room and discuss his previous 12-24 hours and plan for his care for the following day, quite interesting if you ask us.  We listen with intent and collect our own thoughts about what we heard during the rounding, doctors ask questions and exit his room.  Vanessa and I look at each other in despair and console each other as our parents huddle around us.  To keep somewhat of a normal behavior, we all talk to the little man as if he weren’t in this predicament and we touch and hold him as much as we can, breathing tube an all.  We even have the PATRIOTS game on the TV as if we were home cheering them on.

Tonight, we were hit with a huge reality check, a plan for Channing to hit the operating room--tomorrow.  Pediatric surgery will be performing the task of removing his kidney(s), placing a tunneled central line (Broviac), as well as a peritoneal dialysis catheter; it will be a BIG day filled with emotions.  Going back to August when we were informed of this diagnosis (ARPKD), we knew this would occur and we were prepared for this journey.  However, when we hear it from medical professionals that it will occur tomorrow, it is heart wrenching.

  

Last week in the front of our house on the sidewalk was another random sign of HOPE

Keep the thoughts and prayers coming!!!

Now let's catch up!

3 day summary- let’s catch up

During our dellema with triage and delivery, Our parents traveled in from 4 hours North and 13 hours east to support us and their most prized possession, their grandchild.

Since Vanessa experienced pre-eclampsia prior to the C-section she was on a 24 hour post-partem magnesium drip to highly decrease the chances of adverse effects of high blood pressure.  That took a lot out of her, limiting the opportunities for Vanessa to see our little man, Channing.  

Thursday

The most Thankful Thanksgiving on record!

Channing got a Kidney ultrasound and a chest X-ray.  Kidney ultrasounds displayed how large the kidneys were and the chest x-ray showed a pneumothorax.  To follow up, an ultrasound of the kidneys was ordered for 2 days in the future and a chest tube was placed at bedside to treat the pneumothorax.  Being an X-ray tech and currently a computed tomography (CT) technologist, I understand that dangers of a pneumothorax- it can potentially collapse a lung.  Rumors of a nephrectomy followed to no avail, it’s a holiday and it was not SUPER emergent.  Though it is evident that one or both kidneys will have to come out to help with his breathing and give room in his abdomen for future dialysis.  Vanessa’s magnesium drip conclude approximately at 8:00 pm on Thanksgiving night, and as she quickly rebounded, she requested to see Channing.  One floor down we traveled up to see him.  A milestone was created a long duration of skin to skin contact.  OH MY GOODNESS!  What an emotional moment for us.  It become more of a reality check that Channing was our little boy, a gift from an ultimate power above for us to cherish. Wow what a moment!  These are the moments you live for when you start off in the NICU.

Friday

Channing become very “puffy” because of the maintenance fluids they were giving him, his lack of kidney function lead him to this.  His sugar became low as well which led the care to decrease his fluids and increase his sugar—dextrose.  He rebounded dramatically.  After some time he became less puffy and his sugar increased.  A Peripherally Inserted Central Catheter (PICC) was placed to keep the sugar up and limited fluids going.  A diuretic was given for a hopeful presentation of kidney function, after some hours past, smidge of urine output was seen in his Foley catheter.  Another milestone followed this night, chest to chest with dad!  It was suggested by a respiratory

 Therapist that I see from this floor (8 West) in radiology where I work and the sweetest nurse taking care of Channing.  Stumbling in my thoughts I took care of myself and sat down in the chair patiently waiting for the moment to old MY BABY BOY!  What and amazing experience, I was able to hold him for over an hour! Under the unfortunate circumstance he is in these are the moments we live for as parents. I will never forget that moment.

Today

Vanessa has nearly recovered from the magnesium drip and has been hungry as a bear.  Not an insult, this is what happens when a wonderful woman gives birth, feeds him (as much as we can), and spends a lot of energy ordering her husband around.  I take the orders in stride as she has gone through so much the last 48 hours, I know I need to be there to be her rock.  Back to Chan the Man… an ultrasound was performed this morning and it showed that due to the genetic disease, the kidneys are growing at a rapid rate and a possible nephrectomy was bound to occur in the near future.  Vanessa, a new mom, was able to hold him for skin to skin tonight, another amazing experience.  Another milestone of during this time was his first poop, it was a doosey.  Such a wonderful experience for a mother and father to experience together. J

I knew I needed my own bed tonight, so I rode home to with my mom to the house.  We chatted flippantly and seriously about the past few challenging days—some tears were shed.  Arriving home our wonderful dog Shandy Mae greeted me with the sloppiest welcoming!  She was soo happy to see me!  I felt like I was home, and I was.  A receiving blanket from Channing’s bassinet was given to her to sniff and to love on.  Curious at first, shortly after her curiosity faded her tail began to wag in happiness and a peck, a kiss) from her was given to me.  I have the video to prove it J.

My replacement for the night.  Does it look like me?

We are thankful for our parents RUSHING to the occasion!  The staff taking care of Vanessa and Channing respectively as well as you family and friends near and far supporting us as you read this blog.

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