Good riddance to you, October!

I know I have not posted in a while and I apologize for that.  I tire of writing bad news about Joshua.  We had a few good days at the beginning of last week... then we started from scratch with the MRSA infection in the wound.  Last Wednesday evening when I arrived back from a one day trip home, I learned Josh had pus squeezed out of his wound that afternoon.  I was immediately concerned because there had not been pus in the wound for a week since the antibiotics should have cleared up the infection already.  Josh's heart rate was higher than usual which is a dead giveaway something is not right and he felt warm to me.  Turns out he had a fever of 37.9 C.  Here we go again.  Since it was night shift, I had to go through a nurse practitioner to get an order for vancomycin.  She initially resisted and wanted to wait until the morning for the doctor to order the antibiotic.  Um, no thank you, I am not interested in watching my son's vitals get progressively worse over the next 12 hours until the doctor orders the same medicine I know he needs right now.  Get the kid some antibiotics now, please.  I cannot stress how important it is for the parents to be aware of what is happening and to speak up when they disagree with a nurse/nurse practitioner/doctor/surgeon's opinion.  Only you have the unique overall knowledge of your child's baseline and tendencies.  Josh was given the vancomycin that night and had two doses in him before the doctor ordered the same course of antibiotics for him the next morning.  By then his fever had come down and his heart rate was closer to normal.  Getting the antibiotics in him quickly was crucial in preventing an episode like the first time when he was so ill for 48 hours.

Unfortunately, this time around the wound continues to have pus that needs to be squeezed out almost every day.  Our surgeon started making daily visits to open up the wound more, cauterize parts of the granulating tissue with silver nitrate, squeeze pus out of the wound, and redress it.  These visits are terribly painful and upsetting to Josh and, therefore, to me.  Since he is still not allowed any kind of sweet pain reliever because they can cause diarrhea, I requested he get a half dose of morphine before the wound care.  Our doctor agreed, but most of the time they only get it in him 5 minutes before the surgeon shows up and it hasn't taken effect yet.  Our surgeon is concerned about why the wound is not healing and the antibiotics have still not cleared up the pus after 5 days.  Her plan is to continue the bedside wound care through the end of the week and if that does not clear it up, Josh will have to go back to the operating room to find the source of the pus. The surgeon suspects it could be an internal stitch that is causing an inflammatory response, although she hasn't seen any evidence of that during her recent squeezing, cutting, and poking sessions.  I just really want the bedside care and antibiotics to work so he doesn't have to be opened up in the operating room again.  Then we literally do start over with the wound healing process and that would be a major setback.  But, setbacks are commonplace around these parts and never more so than in the month of October.  I enthusiastically welcome November's arrival.

This latest round of infection has necessitated countless needle sticks and blood draws.  These are always a source of stress and pain for Josh.  He required a venous blood draw for the blood culture, another blood culture from his PICC line, a wound culture, and multiple rounds of heel sticks for testing samples.  His hematocrit level has continued to fall so he needed two blood transfusions on Saturday which of course required a new IV and, thus, another needle stick.  My poor pincushion baby.

Despite all of the negative side of the wound and infection, Josh's feeding has continued progressing well and he is now up to 20 cc's of milk every 3 hours.  The doctors are very pleased with his progress even through the multiple infection episodes.  This is the incredibly important aspect of Joshua's overall healing process so we are very thankful the feeding is going well so far.  I never had any doubt Josh would excel at eating, he is always hungry like his Mama!  Now we have to get the infection under control and the wound healed this week.

Throughout all of this, Joshua has continued to exhibit the strong and sweet spirit so many people have come to admire and love him for.  Josh is such a tough kid and I am so very proud of him.  I feel very blessed to be his Mom.

Life on the B Side

On Sunday evening we received the much anticipated news that Joshua was moving back to the B side of the NICU.  I was able to select our room out of the available three and chose our old room #2240.  This is the same private room we have been our two previous stays on the B side.  I was ecstatic to be back in the room with Joshua!  I sure have missed our cuddle time and we are definitely making up for all the lost opportunities to snuggle during the last two weeks.

David installed a 32" flat screen TV and I decorated the room for Halloween to make it feel more like home.  We have a stocked "pantry", a handmade afghan on my sleep chair courtesy of MawMaw, and original artwork from my nieces on the wall.  Josh now has the best looking, most inviting room in the NICU!

Joshua had a few mediocre days at the beginning of the week because of his tender belly and bad diaper rash.  Every diaper change was a very stressful event, but a strict diaper care regimen and oxygen therapy have helped his rash tremendously.  His "oxygen therapy" consists of having an oxygen mask blow air on his bare bum for an hour or so.  It has worked wonders and Josh is so much more comfortable now.

The MRSA infection is responding well to the vancomycin antibiotic, thank heavens.  The infection is in the wound only and is not systemic - another piece of good news.  Our surgeon had to reopen his wound on Wednesday (again with no pain killers) to squeeze out more pus.  We were pretty concerned, but the wound looks much better today and the doctor even ordered for Josh to come off the antibiotics tomorrow so she must be confident the infection is under control.

Joshua is up to 8 lbs. 12 oz. and 22.5" long.  He is stretching out like his daddy!

I finally heard the comment I have been waiting to hear from the doctor - they are talking about increasing his feeds in the next few days.  I am SO ready for Josh to receive more than 5 cc's of milk and I know he is, too.  He cries every time you take the bottle out of his mouth after his paltry ration.

Now that we have the infection under control, we need to get his diarrhea in check.  I am quite sure it is due to the antibiotics he's on and very hopeful once he gets off these his poops will be back to normal.  Then we can show these doctors what a good little eater he is and work our way back up to full feeds so we can go HOME!

Two very important people in Joshua's life are celebrating birthdays this week.  A very big Happy Birthday to Oma & Uncle Wes!!

 

Trials and tribulations

Just when we thought we could finally be on the road to recovery, a four letter word stopped us in our tracks and is scaring the living daylights out of us - MRSA.  Joshua started acting differently Tuesday night.  His temperature was up a bit, he was crying more, couldn't be consoled, and didn't want his pacifier.  The most alarming sign was the bloody discharge oozing from both sides of his wound.  Our nurse and nurse practitioner that night checked him out and told us it was nothing to worry about.  Yeah, right.

By Wednesday afternoon Joshua had spiked a high fever, his heart rate was over 200, and his incision was oozing pus.  When our surgeon arrived she seemed pretty upset that no one had told her Josh's wound had changed from the day before.  She immediately cut through a few stitches to release the pressure on the wound and squeezed out a bunch of pus.  Josh was not on any pain meds at the time and it was awful to watch him go through this.  He was started on antibiotics, given a bolus of fluids to try and bring his heart rate down, and tylenol to bring his fever down.  The fluids helped temporarily, but his heart rate stayed between 215-230 and even got as high as 242 during the late afternoon and early evening.  I was (and still am) completely freaked out by how sick he was.  Cultures were sent to the lab and we anxiously waited to learn what type of infection he had.  This morning we got the answer and it was the last thing we wanted to hear.  MRSA is an antibiotic resistant staph infection that is common in hospitals and can be a real bitch to get rid of since it does not respond to certain antibiotics.

Josh has been on two antibiotics - Vancomycin and Meropenem - since Wednesday and the Vancomycin seems to be working.  His heart rate is back to normal and his fever has subsided for the most part.  Our surgeon told us yesterday that his wound looks "100 times better" than it did on Wednesday.  The problem now is managing Josh's pain.

Joshua is in significant pain just about any time he moves and especially during diaper changes when you have to lift his legs towards his belly.  The antibiotics gave Josh diarrhea which is causing a bad diaper rash and is also uncomfortable to him so he needs frequent diaper changes.  It's a vicious, painful circle for him and it's driving us mad.

He was on a combination of morphine, tylenol, and ativan, but was still in pain today.  Josh responded well to toradol after his surgery so I requested this non-opiate pain killer be added to his regimen.  He received his first dose a few hours ago and has been resting more comfortably since.

Watching and listening to your child suffer and being powerless to do anything about it is life's greatest agony.  It is simply dreadful.

Joshua is still continuing to drink his measly 5 cc ration of milk even through his infection.  He will not be allowed more milk until his diarrhea clears up, but his diarrhea will not get better until he gets off the antibiotics which can't happen until the infection is gone.  So we are once again in purgatory not moving forward until we can get past this latest obstacle.

Joshua the way we want to see him these days - asleep so he is not in pain.

Regroup: Take 3

We had to regroup after Joshua's malrotation incident, we had to regroup after his first bowel resection surgery, now we have to regroup after his second bowel resection surgery.  You go through shock and denial, you grieve for what you lost, you drastically lower your expectations, and you regroup and move on.  There is no other option. But, this time has been much, much more difficult for me.  I am sick and tired of seeing my sweet son suffer.  He has had enough tubes shoved down his throat, trachea, and stomach.  He has had enough IV's, blood transfusions, X rays, and heel sticks.  And now we are in for many more months of just that.  It is hard for me to wrap my head around it. 

I have shelled myself off so I can avoid questions I don't have answers to.  I am already frustrated I don't have solid answers and it's even more frustrating to try and explain this to others.  It is also depressing to verbalize what is ahead of us.  This is something David and I need to process and face together and we are.

We were able to speak with our surgeon today about the specifics of Joshua's surgery and his progress so far.  She told us Joshua has 52 cm of small bowel left along with his duodenum and his entire colon besides the ileocecal valve.  Apparently Joshua had less small bowel to begin with because of his gastroschisis condition.  He also lost approximately 52 cm of small bowel which in his case is half his small intestines, but would only be 30% in an average infant.  On the scale of severity for short bowel syndrome, Joshua is somewhere in the middle.  His long term prognosis after many months of continuous feeds and IV nutrition is good.

Our surgeon said his incision site looks great, his belly is nice and soft, and he is progressing really quickly from a post surgery perspective.  She even said Joshua had the best looking tummy in the NICU!  His Anderson stomach tube has already been removed and he is pooping with almost every diaper - good signs.  The fly in the ointment is upper airway inflammation causing him to have difficulty breathing.  It is expected that the steroids he is getting will kick in and he will be able to get off the ventilator tomorrow.   I can't wait for him to get off the ventilator since he hates that tube more than any other.  He gags on it, his head turns red, and his face contorts in pain.  It is agonizing to watch.  Besides a few gagging incidents, Joshua looked relatively comfortable tonight.

Worry, fear, anxiety, and heartbreak.  I know every parent goes through these emotions, our situation just amplifies the feelings.  It is all so worth it for our against the odds warrior, our strong son, our little hero - Joshua "Tough Guy" Folden.
 

Joshua resting tonight.  He is getting so long his little feet won't fit in the blanket.

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!