Paving new "Rhoads"

After numerous times of pressing the snooze button on my phone, I finally woke up to greet the sunny day today.  Before putting my phone down, I clicked on my "notes" app and opened up an old note titled "Our Amazing Gift."   I am not sure what drove me to open this random note that is way below many others, but I did.  This note was excitededly started after Vanessa and I found out we were pregnant last spring.  I made notes of exciting milestones that were occurring as we grew more confident about our positive pregnancy.  Milestones included the date of the positive pregnancy test, the ultrasound at 7 weeks to REALLY confirm it, and the fetal nuchal translusency exam at 11 weeks as well as a few other random notes about our exciting new journey.  I am not sure what drove me to jot these down as these moments at the time, were being cemented in my memory bank.  Maybe it was for this current moment,  to reflect what was then and what is now. These pre-blog notes eventually stopped in August as the road we were on changed and had to learn to pave new "Rhoads." 

Today nephrology increased his dialysate to 50 mL, a 5 mL jump from the day before.  This may not sound like much, but it is a lot on a tiny belly.  He seemed to tolerate it well until later today.  After his 3 pm feeding which he took mostly from the bottle, he indroduced us to a new voice, a high pitch screeching cry.  He was inconsolable for some time until we rocked him a certain way to settle him down.  To comfort him in the mean time, the nurse gave him Tylenol which was cleared by the NICU team previously for as needed dosing.  Leaving the hospital night we expressed to the nurse that we were concerned that the increase in fill volume was a little rushed; the nurse agreed.  For Channing to tolerate the increased volume, he should not have to be given Tylenol to tolerate it.  We hope nephrology can learn from this and clinically watch him the next few days to see if he improves with the fill volume.  The percentage of the dextrose was kept the same, 2.5 percent, as the fill increased.  Channing still has a good output of "urine."  

Another thing that "popped" up last night after we left.  Our nurse noticed a small hernia in is left lower abdomen.  She gently pressed on it to get an idea of what it was and possibly the severity of it.  It essentially disappeared for the time being, however the area will be carefully watched in the future.  Peritoneal dialysis can create hernia’s due to constant pressure in the abdominal cavity.  With treating his disease, many other health conditions may pop up, but we’ll address them IF we come across them.  Moreover, he will have blood tests next week to evaluate his thyroid treatment.

Hanging out with his Uncle Vic.

5 weeks and 2 kidneys short

Well it’s been a crazy fun filled 5 days away from the blogging machine.  We hope you all had a Merry Christmas.
Firstly, Channing invited his mom and dad over for a sleep over Christmas Eve night.  It was our first full night with our little man, and boy was it nice to be by his side at night while his nurses fed and changed his diaper so his parents could sleep.  Just kidding, we pulled our weight and took in some knowledge from the nurse with the most seniority in the NICU--40 years on the job!
Within the last 5 days, Channing experienced a few changes with his care.  His dialysate went up gently to a 40 mL volume which is up from 35 mL.  Moreover, the concentration of the solution was brought back down to 1.5 dextrose to slow the "pull" of fluid from him as to not dehydrate him.  This was the only change for that day since one change can make drastic changes to his hydration, electrolytes, and blood pressure.  A couple of days have past and a change to his intake (milk) was made today; a change from 44mL to 45.3 mL every three hours.  Vanessa and I were stunned by this peculiar change, 1.3mL!!? We asked the nurses why the super small amount of change to his feeds, both day and afternoon nurses stated they need to take the calculators away from the residents making this change.  We agree, a whole number of 45 or 46 would be perfectly fine.  A -0.3 or +0.7 mL additional feed won’t make or break our growing Superman.  On a more concreate common sense note, along with the change in feeds, Channing has been taking milk from the bottle with a high success rate.  Of the 45.3 mL (1.5 oz), he is drinking between 25 and 30 mL from the bottle and the rest is put on a pump over an hour via his NG tube. His feeds are still and will always be fortified with additional electrolytes as these are the most difficult to manage since he is on peritoneal dialysis/no kidneys. Occupational therapy came by today to evaluate his current feeding skills.  They pointed out different tips and tricks to help him possibly feed more from the bottle and voiced encouraging words to us new parents that he is doing very well with his feeds as it currently stands.
He is still getting labs drawn every 48 hours to check those electrolytes as I mentioned above.  Tweaks are made every time the results come back.  It is amazing how quickly the care team can make a change to Channing’s specific needs.
Another diagnosis followed today was that he now has hypothyroidism. In short, the brain is sending signals to his thyroid at a high level and his thyroid is not responding to the signals signifying his thyroid is underactive.  It is painlessly treatable with a medication called Synthroid.  Treatment is easily adjusted following routine blood draws that test Thyroid Stimulating Hormone (TSH) and T4 levels.  The diagnosis is puzzling as Channing’s heel stick test as a neonate resulted in normal function of the thyroid.  My investigative skills are to ask nephrology or NICU team if this condition commonly occurs in kids experiencing end stage renal disease, like Channing’s case.
Nephrology and NICU teams have stated they are very pleased with Channing’s response to treatments and hope he continues to stay on this track.  Now adding Endocrinology for the thyroid issue, he is becoming a very popular guy.
Vanessa and I still continue to find a balance of work, time with Channing, and normal home life.  We’ll get there as the the support around us grows, it helps in unbelievable ways.
A few great moments of the past few days.

Five week family photo.

Preparing for Christmas

Well, it’s the eve before Christmas Eve and all through the house is us stirring around to depart for Channing’s penthouse. His stocking is hung near his bassinet with care with hopes that Santa would soon be there.  His parents nestled all snug in his room on the couch-bed while visions of more milestones danced in their heads.

As Channing approached his actual due date today, he has experienced a few changes since our last post.  He has had some inconsolable nights, however his nursing staff and care team troubleshooted his needs.  They came to a conclusion that he may be experiencing reflux or discomfort due to a small increase in his dialysis fluid.  A change from 30mL (1 oz) to 35mL was made to hopefully achieve more output "urine," in his current dialysis process. In an attempt to treat this hypothesis, a decrease in his fluid (breast milk) was made.  He was receiving 47mL over a two hour period of time; first starting with bottle feeds then the rest through his NG tube. An hour of no feeds would follow for hopeful hunger pains to take a bottle the next feed.  He now takes 44mL with the same regiment and so far so good.  It is amazing a small change like that can do wonders on a tiny tummy.  Additionally, his feeds are still supplemented with sodium bicarbonate twice a day and sodium chloride every feed and since his feeds "dose" has been changed, Kcals are added to his feeds for additional calories as well... Wheew!  Just like daddy drinking his protien shakes, however his supplements claims are supported by the FDA and his daddy’s is probably just neskwik in a fancy bag promising to look like Arnold Schwarzenegger.
Channing has blood draws every 48 hours to check his electrolytes and blood gases.  Nephrology has stated that treatment with peritoneal dialysis is a moving target, however Vanessa and I believe they have hit the bullseye more often than not.

Channing has had some days with occupational therapy and physical therapy to keep him on track with developing motor movement.  SInce his peritoneal dialysis catheter is healing very will, OT got the approval from nephrology to try "tummy time."  With Vanessa’s eyes glued on Channing, he lifted his head, looked at his mama and turned his head.  This was a HUGE success!
We hope in time, he takes more or all feeds from the bottle and less from tube feeds.  However, this is usually a problem with the treatment for ARPKD and peritoneal dialysis; a continuous full feeling as I said in the previous post as I alluded to Thanksgiving dinner.
On that note, we are preparing for a home cooked with our amazing family for Christmas.  So as Channing’s mom and dad wake up in his NICU room Christmas morning, we hope our wish of growth and strength in the following days comes true.

We hope all of you supporting us and Channing have a Merry Christmas thank you for the support!!

Channing’s Christmas photo shoot with his favorite nurse and some other great moments follow....



Channing is 4 weeks today!

Going back to our meeting with a NICU Doctors a few months ago.  The attending physician said, "at one point or another, you as parents will state, this journey is a roller coaster."  At the time we did not deny the truth of their statement, but they were right. We are locked in for the ride that Channing is building for us.  Since we have hopped on "Channing’s Life of Fighting ARPKD" roller coaster, we have definitely had some steep climbs, heart wrenching down slopes, as well as some gental twists and turns, we fight to stay in good spirits.
He has tolerated his bolus feeds through his NG tube very well, even as they increase the amount.  Along with this he has done very well with taking a bottle to learn how to bottle feed.  Though it isn’t much, 10 - 15 mL which is roughly a tablespoon.  It may not seem like much, however it is monumental while treating this disease, especially with peritoneal dialysis.  Imagine if you sat down and ate all of what you could for Thanksgiving dinner, including the gizzard and that delicious dessert your spouse made... oh yeah and that fruit cake that grandma brought over.  You would feel absolutely full, as if you could not eat or drink anything else.  I apologize for the hyperbole, but this is essentially how Channing feels around the clock from his peritoneal dialysis treatment.  So, for him to take a bottle and feel hungry is a great thing--he loves his fruit cake.
His peritoneal dialysis fluid has remained at th 2.5% dextrose concentration with a 30mL (1oz) dwell for 45 minutes.  However, this will change possibly next week as the fluid may be adjusted a bit which will test his tolerance.  Though he hates his blood pressure being taken, especially his right arm, his pressure has remained low.  Due to his low blood pressure, he has not needed any medication to regulate it.  He keeps on amazing us with his daily progress.  Additionally, today he received his 2nd of 3 weekly doses of epogen to stimulate red blood cell formation.
Going back to work has been rough as all I can think about is being with him and Vanessa while they are "hangin’ out" in his room together.  I do however find time to get up there a few times a day to make my Dad presence known. If I am able to see him before Vanessa arrives to the hospital, I read him a book, and at times listen to the Dr.’s discuss his care needs and achievements as they round.
A few great moments today as Channing celebrated 4 weeks!

Grey skies and "sonny” days

We apologize for the lull of updates/posts the past few days, Santa’s visit took a lot out of us, including Channing.
Though numerous days have been cold and grey, inside Channing’s room has been active with bright positive milestones that exhilarate our heartfelt days.
He has tolerated the increase amount of feeds as of late.  Though his OG tube has been moved and now enters his nose and ends in his stomach (nasogastric tube "NG" tube), he now has a better ability to suck.  This has come in handy since he is more interested in his pacifier and a bottle, yes a bottle.  With the increase feeds, the care team has changed how he is fed as well.  Instead of continuous feeds through his NG tube, the care team adjusted him to bonus feeds.  He is fed 14.7 mL/hour for two ours then is off feeds for an hour.  This process is supposed to test his body’s ability to tell him that he is hungry.  On the contrary, with peritoneal dialysis many neonates do not feel hungry, especially at Channing’s age, because of the constant full feeling from the dialysis fluid in his abdomen.  Contrary to the contrary..... Channing has proven he is one upping his disease, he took his first bottle on this past Friday!  It was a slow adjustment for him, but did very well for his first time.  While we have been away from the hospital at night and some mornings, a few nurses have had much success and others have not.  He feeds better with mom and dad.  However, it is a new task for him, but will hopefully improve with time.  This past weekend a different nephrologist as on-call and was new to Channing’s strength, the nephrologist was surprised the he was taking a bottle at his age.  Mic Drop.....
His Dialysis fluid "Dialysate" has been at 2.0% dextrose for the past three days and has been working well. Each 45 minute dwell of the dialysate, he achieves 8-15 mL of output.  This is a great thing to see that shows PD is working well.  He is tolerating 24 hour ‘round the clock fills and dwells.  Additionally, his dialysate is just that, no more antibiotics to treat his issues with peritonitis--the infectionhas resolved!
Channing is off fentanyl for pain management, however he has PRN (as needed) Tylenol to take off the edge of discomfort, but is rarely needed. This has made him more alert the past few days as he has had wide eyes to view the amazing world around him.
WIth all of these amazing milestones and signs of strength from our little Superman, Vanessa and I are still having a hard time with feeling overwhelmed and anxious.  Though as any new parents it is expected, our current circumstance makes it much more difficult.  We know we aren’t the only ones since the NICU is primarily full with little babies in need of care.  Managing home and personal lives when all we want to do is be with our boy is difficult.  Making sure we have enough time in the day to drive to the hospital, stay to witness milestones, and create a "normal,"  life has been a relentless struggle.  At times with joy, yet many in dreadful sorrow we have broken down and cried many days and nights.  Having the endless support of family and friends has buffered this continuous hardship we face and are always thankful.
Here are a few monumental moments of the past few days.


Channing meets Santa

Santa graciously visited the NICU today.  Channing was all suited up for the occasion!  I made it in the "Nick" of time for the photo op.  I haven’t been this excited for Santa in 25 years! 

Also.. Channing had to pose with his dad.. we have the same exact stink eye look.. like father like son.

Channing is three weeks today!

Each day is a blessing as tomorrow is never garunteed.  That statement was described to Vanessa and I during our meeting with the NICU team almost two months ago.  It was a statement that stuck with me and I think about it more each day I am able to be with Channing.  The attempt to prepare us for deep struggle with many ominous statistics against Channing, was not going to be accepted.  We knew what we were up against and were going to do what ever it took to get over the hurdle of each day and plan for the next.  So far, Channing has proven he is a relentless red headed "ginger " and will continue to conquer this disease today and all following days.  

Channing has been able to tolerate feeds through his orogastric (OG) tube that past few days, a good sign that the treatment for his infection is under control.  Saturday will be the last day of treating him for the peritonitis his care team suspected he had.  The nephrology team has kept up with the same mix of the dialysis solution, mixing equal parts of 1.5 and 2.5 dextrose for a final concentration of 2.0%.  As we have seen, this will flutuate depending on his intake of fluids.  With that being said, at the surprise of his care team, Channing is up to his goal for daily fluid intake for his age and weight!  This is a huge obstacle when treating babies with autosomal recessive polycystic kidney disease--his strength is proven each and every day.   Moreover, his pain management is finally planned and will soon be cycled off of fentanyl in the near future.  Lastly, he is off any breathing/oxygen support for his breathing and is great.  As I have said before, this can change, but we’ll ride this wave as long as we can!

Going back to work Tuesday was a very challenging task, however with the strength of Channing on my mind, I completed my first day on a very happy note.  I was able ride the elevator to his floor, walk to his room and  hold my baby boy for over an hour before going home for the night.  This is something that Vanessa and I have been able to do more of the past few days.  A great feeling for us new parents as he is more alert and awake to discover who loves him the most.  Though it has been challenging, going back to work has been a positive experience as I have realized how many people (staff) are touched by our story and support us any way possible--such an inspiring feeling.

Hard to believe it has only been three weeks since we were blessed with Mr. Channing "Superman." He has changed everyone around him in many positive ways.

Change is good...

Change came in as a tidal wave for us nearly three weeks ago when Channing was born.  It was a change we were able to slightly prepare for, but still had difficulties understanding how our lives would actually change or how we would react. Then boom, November 21st blessed us with our next chanllenge that would change us forever. I have to say I am proud of how we have handled this emotionally charged circumstance we have been blessed with.  We have learned that patience is actually a virtue, Channing has done a wonderful job at showing us (me) that every letter forming that statement is true.  We have learned that beyond his care team and our wonderful family that love and support is found in many places.  We were greeted by Delta Airline pilots as they represented the "Pilots for Kids" foundation.  This foundation founded in 1983 by crew members who wanted to help with the needs of hospitalized children. It is an international nonprofit organization that just so happened to have respresentatives stop by the NICU the other day, two pilots paid a tribute to Channing.  It was one happy moment for us as we discussed Channing’s struggles and gratefully received a few handmade items for him.
Though, coupled with his daily treatments we live moment to moment with Channing.  However, with the the past week, we have since been a bit more relaxed and have taken small doses of time for ourselves.  We have successfully completed normal tasks that after three weeks of having a baby, at home parents would be dying to do. We have gone to a movie, gone our to dinner with family, and took some time to be with each other outside of the house... all without finding and hiring a babysitter. We have taken the time to have good ole’ flippant conversations to ease our moods and of course dance in the kitchen.
Channing’s care team constantly changes the concentration of his dialysate solution.  Change is a constant with this type of dialysis. Today a change to a mix equal parts of 1.5% and 2.5 dextrose to quantify a 2% solution was made.  This pulls off "filters" less than the 4.25 % i mentioned that they were using a few days ago.   Additionally, he is given more fluids during the day and.. and... is getting fed!  His care team has agreed to give him more nutrition in the form of breast milk.  He is handling this change very will and has not gotten sick, we think his peritonitis and questionable infection in his gut is mostly resolved.  They, however, are treating him still (9 of 14 days) with antibiotics in his dialysis fluid, but are feeling good that he is feeling good.  He is getting less fentanyl, every 8 hours now, with hopes to ween him off possibly by the end of this week. He is still receiving Tylenol as needed.  Wheew.. Hmmm.. anything else.....?  Oh yeah, I go back to work tomorrow... I will do my best to keep it together, however, if I can’t, the girls I work with will get me through.  I am thankful for them and all other coworkers for helping me before Channing and continue to be there for me now that Channing is here. They are an amazing group to work with...
We continue to be thankful for all that have reached out to support us, we are so grateful!
We were excited to see our little man outside his hospatil grade bassinet today... the swing looked so good on him :)

Some days...

As Vanessa and I are taken on this journey with Channing leading the way, we continue to be very thankful for family coming to the rescue to cope with us through some of our worst days--there have been many.  Also, the out reach and support of neighbors, family and friends near and far has been beyond belief and we again just want to thank you for your continuous kindness.

Today was one of those "worst days," as seeing Channing upon our arrival became inconsolable.  It is not that we feel like we are getting weak or giving up.  It is the fact that we cannot pick him up, hold him, or rock him close in some quick way to ease his discomfort; we want to with the most dire need.  It is a juggling act to get him out and hold him.  However, while hooked up to IV feeds, breathing support, and most importantly his peritoneal dialysis catheter, we do what we can to "rock and hold" him in his bassinet for "quick" mother and fatherly consolment.  Eventhough Channing is our boy, a champion of battling his illness of ARPKD, he at time feels out of reach.

A few changes to his pain management were made today, still receiving fentenyl, but a longer period between doses.  He does however, have a PRN (as needed/when necessary) order if he cannot make it between a 6 hour period during the day/night. We hope that a slow ween from this medication will occur soon as well.  He receives rectal Tylenol at certain periods of the day as well.  A change to his dialysis fluid was made today as well.  Nephrology figured that he was getting to "dry" with the 4.25 dialysis solution, so a change to a 2.5% dextrose was made prior to us leaving for the day.  He is still on restricted fluid intake through IV; he gets what he needs and that is it.  We are hoping that the treatment of infection has ran its course, as for tomorrow we hear rumors that he may be able to be back on tube feeds with breast milk.  He hasn’t had anything by mouth since last Saturday when the "infection" was discovered--poor little dude.  Changes happen daily with figuring out Channing’s needs, after some time they will be known, but in the mean time we are reminded how difficult treating this disease really is.

I have decided to go back to work this next Tuesday.  Though I am only 5 floors down in radiology, this will be a tough transition to what I (we) have gotten used to; spending 4-5 hours with him daily.  I will definitely be checking on him, maybe "get lost" to stay a few extra minutes with our amazing boy.

With this constant daily struggle we create many happy moments.  This weekend his uncle Vic was able to fly from Connecticut to Michigan to pay a visit to his nephew Mr. Channing.  Let me tell ya, uncle Vic has the touch!  Channing was as calm as a cucumber in his uncle’s hands.

2 steps forward 1 step back

To start.. I know a few lovely comments have been sent to us in previous posts.  I would like to thank you for the comments, as google, the owner of blogspot, has had issues with letting us reply to the comments.  I would like to take this time to thank you for leaving a little note for us, we believe the positive thoughts and prayers have assisted us in coping with this new world we live in with Channing. Though he hasn’t spoken a word and for such a small person, he has made a huge impact on many.  It is amazing the out reach and support Channing has created. Every thought, prayer, and mode of support we (he) receives we get stronger, so thank you all for keeping up-to-date.
Today started off with a little pampering, a haircut for the both of us; these are the small moments we get to decompress.  After my 5 minutes of fame, Vaness’a hair stylists moved to her, it was a much needed time to relax.  I headed off for the official paperwork from the county clerk in Ann Arbor, Channing’s birth certificate.  Once I received the copies I walked across the street to a coffee shop.  I paid for an hour of parking so I definitely took advantage of that hour.  I sat down dead center of the sitting area with my hot freshly brewed coffee in hand with all other patrons around me.  Wondering if I was accepted in this space I sat down confidently anyway.  I was not there to write a paper, research, or catch up with an old friend.  I was there to take a moment to reflect on my current blessed world I (we) currently live in.  Being the nucleus of the coffee shop, considering our circumstances, I had a quick thought of whether I was the most important patron within the small world of coffee drinkers.  I believe I was.  Since Channing was born I (we) have had the most focus and positively charged way of life, he has changed how we view each and every day, down to the minute.
Today comprised of a few "setbacks." I put setbacks in quotes since clinically Channing is doing very well since his birth, however, the care team is continuously challenged by his needs.  One day he needs breathing asssistance and one day he doesn’t. Well today he needed it and a litte more.  He started out early in the morning with a nasal cannula on 25 percent oxygen, room air is 21 percent.  He was getting a little bit of help.  He ended the day on a high flow nasal cannula with assistance for expiratory pressure; this was all because Vanessa, me, and family pointed out to the nurse that his breathing became increasingly labored throughout the day.  The change to the high flow nasal cannula was coupled with dialysis fluid changed to a 4.25% dextrose concentration, the highest there is.  We are thinking both NICU doctors and nephrologist are trying their best to better his breathing ability with increase oxygen and increase output (urine).  We will see when we call to get an update in the morning.  We are still not used to calling to get an update on our baby boy, we probably never will be.  One day we will be able to check on him upstairs in his room, his nursery.  However, until that day occurs, this is what we have to do.
Ok ok, enough with the sappy sapp and getting to the positively charge nucleus we live in (trying our hardest). We had another great moment today. Grandma "Gigi" Lawrence was able to hold her grandson for the first time. Again, we were elated for this moment.  Little by little we enjoy positive moments as they are granted.

Channing is 2 weeks today

It’s been a few great days in Channing’s world.  He has since cut the leash of a nasal cannula that he once needed for breathing assistance.  Though he is still treated as a premature baby and works a little bit more to breathe, he is doing just fine without the help; another milestone for our little Superman.  He may necessitate breathing assistance in the future however, we will ride this wave as long as we (he) can so he can show off his cute little face.

A change in the dialysis concentration was made today.  A change from mixing 1.5 and 2.5 percent of dextrose to equal a 2 percent dextrose dialysis solution to just using the 1.5 percent.  The 1.5 percent dextrose solution is the lowest amount the care team started with to create the slow dialyzing interaction that continuously occurs in his peritoneum.  He is essentially at his dry birth weight as much of the fluid that was retained post nephrectomies and pre-dialysis is gone; dialysis is working wonderfully!

Other than Channing celebrating two weeks today...the first grandmother was able to hold her grandson for the first time.  An amazing moment!   Channing enjoyed every minute of it!
The only time he cried was when he was in dads hands and needed a diaper change. Though still only  a smidge of meconium due to lack of feeds for treatment of peritonitis, he requested mom change his diaper.  Perfect dad move right?  However, I know I will be passed the poopy torch to change next--I have changed 3 so far. :)

Below are the amazing moments of today!

One week Post-op

It was yet another frinterish (fall/winter) gloomy day in Michigan as Vanessa and I were driving to Channing’s palace today.  Vanessa and I were listening to the radio, and were reminded of something very important about life--life changes.  The song, "Life Changes," sung by Thomas Rhett, came on and once it started, Vanessa and I looked at each other agreeing to the lyrics and shared a smile.  In part of the chorus, the lyrics go like this, "Ain’t it funny how life changes, you wake up, ain’t nothing the same and life changes...you make your plans and you hear God laughing.  Life changes, and I (we) wouldn’t change it for the world."  A strong connection has been made to this song as we have been granted this life change, and would not change it for the world.
Channing had surgery one week ago, it is amazing how much strength this little Superman has shown us.  He continues to be treated for peritonitis with antibiotics within the dialysis fluid that is going in the suspected space where the infection may be; the peritoneum.  Cultures have come back negative, but his white blood count is still elevated which has puzzled most of his care team.  His pain management continues to change as his entire care team learns what his needs are.  Since he speaks in different tones of cry’s and winces, the nurses as well as his mom and dad have learned some cues.  His dialysis fluid was changed this afternoon to a higher concentration--higher sugar content.  This, in theroy, is supposed to draw more fluid/toxins from his blood (to make "urine") off of him than what he was originally started with.  He started with a sugar concentration of 1.5 percent.  Today a peritoneal dialysis bag of 2.5 percent of sugar was hung.  These are big, BIG bags, I believe they are heavier and larger than baby boy Channing.  The two concentrations are combined at 15 milliliters a piece for a final concentration of 2 percent sugar... Confused yet?
After hearing our anthem of "Life Changes," Vanessa and I walked into some amazing "changes" today.  He was off the CPAP machine that was assisting with his breathing, essentially a diploma from a breathing tube down his trachea. AND.. he was less swollen.  Especially around his face where much of his retained fluid remains... we are slowly becoming to know our baby boy’s face and cannot wait until he can open his eyes.  Vanessa stated her Christmas wish today.  Her wish is that his peritonitis is resolved and for Channing to be able to open up his eyes.  We have 22 days left and believe we are riding the "Polar Express" train to that successful wish; I BELIEVE.  One wish granted last night was a room with a window.  It helps to be buddy buddy with his amazing care team.

Another huge moment occurred today, Vanessa’s dad "Bumpa" was graciously able to hold his grandson for the first time.  We wouldn’t change this moment for the world.

One step forward two steps back

As Vanessa and I were getting comfortable in bed last night, my phone rang.  I looked at the number, glanced at Vanessa, as she was half way to the moon I answered it with some hesitation.  It was the nurse in charge of Channing’s nightly care, this at times can be a call full of elation or a call of dispare; it was a call of dispare.   To prepare you for the call I would like to quickly inform you of what occurred yesterday as we began dialysis.  Yesterday there was a bit of concern of the first drain of fluid from his peritoneal catheter.  The first fluid drained was a bit cloudy and greenish yellow, the nephrologist was not impressed as it was suspicious and lead to questions of a possible infection. As I stated in the last post, he ordered to test the fluid for infection which the tests for bacteria have not come back....24-36 hours is needed to grow cultures for bacteria. Throughout the day Channing had continuous green, bilious spit up from normal digestive functions.  However, with the continuous feeds, this spit up showed signs of concern with his digestive system, something serious if not treated. Getting back to the call from the nurse, she informed me that dialysis was stopped and feeds were haulted to understand why Channing had continuous spit up from his gut. Another dose of information was disclosed.  The fluid from his dialysis catheter showed twice the amount of white blood cells than normal in it, 69,000, this was a sign of peritonitis which is the area of the body where the dialysis is taking place.  Ultrasound would follow in the morning. Going to sleep was difficult, but slowly managed.

We made the call to the NICU in the morning, which is now our daily routine.  The nurse informed us that Channing had an ultrasound and questions to whether he had an ileus or an intussusception in his bowel was much of a concern; this can happen at times when people are asleep for surgery and can create huge life threatening problems if left untreated. An upper GI in radiology, where I work may have to be performed... EEK!  This was a huge setback to hear.

We arrived to the hospital and Channing looked, pale, uncomfortable, nearly lifeless and we felt we were slowly losing him with this set back.  We were very emotional, however the nephrologist calmed our nerves as he informed us that from the imaging study, ultrasound earlier this morning, showed positive signs of no classical concerns of ileus or intussusception.  Additionally, antibiotics would be in his dialysis fluid to treat the possible peritonitis and will continue.

After we were calmed with semi good news, my dad, Grandpa Rhoads (LoLo) was finally able to hold Channing.  This was a moment for the ages.  Though he is on a CPAP machine to assist with his breathing, a central line for his TPN and blood draws, and his PD catheter for dialysis this boy can travel!  LoLo was thrilled to hold his grandson.  

It was a difficult and stressful day for us, but were relieved that at least one grandparent was able to hold their grandson. We have been informed that the journey Channing is graciously taking us on that many days will be like this, however for us new parents it is impossible to prepare for. As we left the hospital tonight (still with difficulty) the respiratory therapists applied a slow ween (lower setting) of the CPAP, a big step to getting Chan Man off of the machine that assists with his breathing.

We are always so thankful for the care he is receiving at U of M Mott Children’s Hospital.

Dialysis Day has arrived!

The day for dialysis has arrived... December 1st, 2018!  During our normal morning call to the NICU, among many encouraging news updates, the day shift nurse stated that Nephrology has decided that today would be the day to start dialysis.  The nephrology team did consult pediatric surgery to evaluate Channing’s surgical wounds and after a wound check, cleared nephrology to begin dialysis. The team waited for Vanessa and I to arrive to his room to start the process of dialysis.  The nephrologist thoroughly informed us of the process Channing was about to begin--a remarkable life saving process of dialysis.
His dialysis catheter was flushed by a nurse that specializes in peritoneal dialysis (PD), cultures were proactively taken to test for possible infection, and the first round of dialysis  began without complication.

10 milliliter per kilogram are given by a gravity drip system into Channing’s peritoneal cavity.  Based on Channing’s weight, 30 mL is used and will increase as his weight increases as well as the space in his abdomen grows.  Additionally, the concentration of the fluid used for his dialysis, essentially sugar water, can change as well.  We are learning that this is a very slow and particular process ,patience is a virtue.

 To sum up the process simply:  30 mL of solution is given to Channing by gravity drip, which should be under 5 minutes to compete.  The solution "dwells or stews" for 45 minutes in his peritoneal cavity, which by osmosis draws fluid/toxins in his blood away from his body.  After the 45 minutes, the fluid is allowed to drain for 10 minutes.  The goal is to have more fluid than what is given (30 mL), which is fluid taken away from his body.  This process is acting like kidneys... what comes out is essentially urine, and the amounts will increase with time

Today’s first round:
30mL of dialysis fluid (sugar water) after 45 minutes, it was drained and 33 mL of fluid exited his catheter. 3mL of fluid was pulled from Channing.  Another round followed and 7 mL was pulled off, and another followed and 4 mL was pulled.  Many adjustments in the future will take place, however this is ONE AMAZING START.

Lastly, a very important piece of this process Vanessa and I learned today is that the kidney’s produce a protein to stimulate bone marrow to make red blood cells.  In Channing’s case, he does not have kidneys and will not be making the protein, epoetin.  He is now being supplemented with this as well and will be for the rest of his life; more to follow as we progress.

Positive quote of the day:  "Look for something positive each day, even if some days you have to look a little harder". -Anonymous

Embracing the journey

It is December 1st, and as we flip the page of our home calendar from November to this new month, my eyes are drawn to November 21st; the day Channing was brought into this world.  Before completely turning the page, I saw phrase below the picture for the month of November, "Embrace the journey."  I have to say, we, family and friends near and far are definitely doing that!
Since leaving the other night in dispare, the past day and a half has been much more positive as Channing has shown much improvement since he experienced that crazy downturn.  A check on the cultures (24 hours since they were collected), has thankfully shown no signs of infection; we are relieved and we think Channing is too!  The lab will continue incubating the growth of the cultures until time of their collection reaches 48 hours. Yesterday was a very calming day as we had some amazing family and friends stop by for a visit.  We shared happy moments of the past and made new by seeing Channing for he first time.
Due to his inability to make/excrete fluids he becomes more puffy by the day.  Doctors have spoken to us about starting dialysis fairly soon; this will be an amazing moment for Channing and all involved!
Since he was feeling better and his health was not compromised, other than his genetic condition (ARPKD),Vanessa and I were able to hold Channing without the assistance of a breathing tube.  He’s does however have a CPAP mask on to help with his breathing.