Happy 6th month birthday, Joshua!

Joshua turns 6 months old today.  I can hardly believe it!  The first six months have been the most intense emotional roller coaster I could ever imagine, but here we are today with a happy, vibrant, thriving infant.  We are truly fortunate!  There are so many people that have helped us get to this point - literally too many to personally thank.  From the nurses, doctors, and other medical staff that tend to Joshua's health needs, to our family and friends that have showered us with visits, love, gifts, and food to the complete strangers that have donated money to help with Joshua's medical expenses, we would like to express our profound gratitude.  We can never adequately convey our appreciation.

Joshua has stolen so many hearts and I know he will continue to do so with his charming personality and eager smile.  I am often asked by people if Joshua is "always this happy".  And the answer is Yes, unless he is tired, hungry, or pooping, he is a joyful little boy.  My pride and love for him are overwhelming.  Six months ago today we had the immense fortune of meeting our amazing, beat the odds, Superman of a son.  Our lives will never be the same.       

A terrible scare and another ER visit

Just when I thought we were settling into a comfortable routine, I was slapped in the face with the reality of Joshua's situation on Wednesday evening.  David and I were moving Josh to the back of the house (it's much easier to do with two people when the IV pole is involved) and into bed when I heard a snap, Joshua cried out, and I saw blood pooling underneath his outfit.  My immediate thought was the worst possible scenario was happening - Joshua's chest tube had ripped out and he was spurting blood from the entry site.  [Insert objectionable language here]  I had been taught emergency procedures before leaving the hospital for just this situation although at the time I thought it was quite unlikely to happen.  I knew I had to stop the bleeding first and foremost.  I ripped Joshua's pants and onesie off in a complete panic trying to brace myself for what I was about to see.  To my immense relief the chest tube was still sutured in place, but the sterile line had snapped in half making it impossible for Joshua to receive the life sustaining nutrients he needs.  Even though it was not the worst case scenario, it was still very bad. 

Joshua's central line snapped in half below the clamp.

Luckily the snap occurred below the clamp so I was able to immediately clamp off the line before completely freaking out.  I called our home nurse, but I knew the whole time that we had to take Joshua to the ER.  He simply cannot go for more than a few hours without being on his fluids.  I was incredibly upset with myself and understandably distraught by the situation. I still have yet to figure out what the line caught on that caused the snap.  I have been reassured by countless doctors and nurses that this happens all the time and is just one of those things you have to deal with when you are raising a baby on long term IV fluids. 

We arrived at the Egleston ER around 1 am and Joshua had his line repaired within a few hours.  This was wonderful news since we were not sure if the line could be repaired or if it would have to be replaced which would require another surgery.  The bad news - after a line repair you have to stay in the hospital at least 24 hours to confirm proper performance before going home.  Joshua is expected to be released Friday morning.  One of the most disturbing things we have heard from both nurses and doctors is that this will more than likely happen again and may happen several times while Josh is still on the fluids.  Say what!?  We were told to be prepared to have more ER visits and overnight stays in the future.  This is terribly difficult for me to accept.  We have to live our lives in constant fear of having to pack up our stuff and rush to Egleston on any given day.   A rather unpleasant way to exist for sure.

Joshua, on the other hand, does not seem to mind coming back to the hospital at all.  He is a total ham in front of the nurses and loves socializing with all the different people that come in his room.  Josh is constantly winning over the hearts of new staff members.  Below is a short video of Joshua chattering away as a nurse searches for a vein to put an IV in.  He has tourniquets on multiple appendages and the nurse is thumping away on his skin looking for the best vein, but Josh doesn't seem to mind.

 We waited in the ER for around 5 hours before being admitted to our room on the 6th floor.  The line repair occurred at the bedside in the ER which was a good thing, because I pointed out three different mistakes to the surgery resident who was performing the repair solo - no other nurses or doctors were present so I was the only one observing what was happening,  This is highly abnormal for Egleston since it is a teaching hospital, there are always multiple people observing/learning/teaching.  I ended up lodging a formal complaint against the surgery resident and was strongly backed by our nurses once they saw his handiwork.  The dressing that is critical to maintain a sterile field around the line insertion site in Joshua's chest was done completely wrong and exposed Joshua to all sorts of nasty hospital bacteria that can easily cause a serious line infection.  I am now watching Josh like a hawk for any signs of infection.  I will hunt down that resident and beat him to a bloody pulp if Joshua comes down with a line infection.  Forget complaints and lawsuits, I will go for blood.  I was already forced to watch Joshua have the dressing changed again once we got up to the 6th floor.  He was absolutely exhausted by this point and the second dressing change threw him into a tailspin.  If looks could kill, that resident would have collapsed on our floor during that process.

I want to see Joshua happy and smiling again in his Bumbo chair at home!  We are so hopeful this can happen by Friday afternoon.  I guess we will have to navigate our way through this freezing rain event first.  Stay safe out there folks!
 

Settling into our new normal

Our last week has been quite busy and productive.  Let me try to catch everybody up on what all has transpired since I last posted (I know I have been grossly negligent with the posts again).

Joshua had his broviac central line placed last Tuesday and the surgery went well.  It was a very long day for the whole family and Joshua was more than a little cranky after the procedure, but he was back to himself by the next day.  Our surgeon told us it was a very good thing we insisted on replacing the PICC line with the broviac because when they took the chest x ray to confirm placement of the broviac, she could see the PICC line had migrated to Josh's neck.  It started out right above his heart, then it was in his shoulder when we went for the ER visit, and now it had moved again to his neck.  Every day when I disconnected and connected Joshua to his fluids I would never know if we were going to be packing up and going to the ER that day because the PICC line wouldn't work.  Now with the broviac we can feel much more  comfortable and dressing changes are much easier.  Joshua will have the broviac until he no longer needs the IV fluids.

Joshua has continued having bloody stools despite me giving up all dairy products in December.  Our GI doctor came to see Josh last week when we were waiting for surgery and he recommended I stop giving Josh the small amount of stored milk I was using to supplement with.  Dr. Romero approved Joshua to have Alimentum formula instead of the Elecare he despises.  I was dubious about Joshua tolerating the Alimentum because it smells awful, but he has proven me wrong and is taking down the mixture really well so far in small increments.  It takes a lot of stress off me knowing he will tolerate some formula.

On Tuesday I took Joshua to the Developmental Progress Clinic at Emory Children's Center for a developmental assessment.  We lucked out and were offered an appointment after a cancellation, otherwise we would have had to wait until May for the next available appointment.  Babies that spend significant time in the hospital after birth are at increased risk of developmental delays and issues with gross motor skills.  After almost an hour wait, we were taken back to meet with a nurse practitioner, social worker, and physical therapist.  The end result is Joshua has now been prescribed weekly physical therapy sessions to work on several issues they identified.  He favors his right side and "cheats" when he looks to the left by turning his whole torso rather than just his head.  He had a PICC line in his left scalp for several months which accounts for the right preference.  Joshua also has weak abdominal muscles (any one would after four major abdominal surgeries) and he is not making some of the typical moves a baby makes like grabbing or bringing his feet to his mouth.  He also does not bear weight on his feet and draws his legs up instead.  Today a physical therapist from the state program Babies Can't Wait is scheduled to visit our home to assess Josh.  Hopefully Joshua will be accepted into the program otherwise we will be identifying other resources to get Josh the physical therapy he needs.  What a senseless thing it would be for a bowel problem to affect Joshua's motor development!

Joshua working on his neck strength

In non-medical news, Joshua continues to thrive and adapt at home.  He loves playing with toys, especially stuffed animals and rattles.  He has a favorite teddy bear we do not leave home without.  We are still working on the sleep schedule, but he is slowly getting better with taking naps in his crib and he now goes to sleep at 10:30 instead of midnight which gives me an hour and half to get as much done as I can before my  bedtime.

Many of you have asked about my work arrangement. I started back to work in the office last week.  My plan for now is to work two half days a week in the office and an hour or two a day from home.  This gives me a sense of productivity, a little bit of money to contribute to our mounting bills, and an excuse for the grandparents to stay with Joshua.  Not to mention I think my coworkers have missed my presence in the office, although you wouldn't know with how well they seem to be handling my abrupt absence.  They have been extremely patient and supportive just like David's employer and we consider ourselves very fortunate for this unique circumstance.

I have to sign off for now, Joshua is starting to wake up and want his bottle.  I'll leave you with a video of Joshua from yesterday talking and blowing a few spit bubbles which is one of his new favorite things to do.

Surgery again tomorrow

Joshua went to his first follow up appointment at the Egleston GI clinic last Friday.  It is an all day event to get our crew packed up and to Atlanta.  Joshua had a diaper blow out on the last stretch of I-85 so we were hurriedly trying to change him while we waited for the doctor.  The follow up appointments are called "clinics" where you see multiple specialists that work together on Joshua's case in rapid succession.  We were visited by the nurse coordinator, nutritionist, surgeon, gastroenterologist, developmental specialist, and ended with the nurse summarizing the events of the hour.  The immediate outcome is that Joshua will have surgery tomorrow morning to implant the broviac central line and remove the PICC line from his arm.  The broviac is a more stable IV for long term use and we will be relieved once it is in place. 

We got the call from Egleston today letting us know to have Joshua on the 3rd floor for surgery at 7 am tomorrow.   Ouch!  It is going to be a rough start to the day since we will have to start getting ready around 4 to make it there on time.  Thankfully the surgery does not require an overnight stay so we are expecting to be released by lunch time.  It will be good to have this (please God let it be the last) surgery behind us. It is a very minor procedure compared to what Joshua has already been through and I am sure it will go well, I'm just ready for it to be over.

The GI specialist confirmed the histology report from Joshua's biopsy suggests a mild inflammatory response consistent with milk protein allergy.  So I will be going the non dairy route for a little while.  Luckily, the allergy seems to be rather mild and the doctor described it as being more of a nuisance than anything.  He also approved me using a little bit of my stored milk to supplement what I'm pumping daily so that really takes some pressure off of me.  The doctor suggested we could try a different formula, Alimentum, that is supposed to be sweeter than the Elecare he can currently have.  And I get to attempt to mix in a few nursing sessions, too!  I am not sure how these will go, Joshua has not had much practice and strongly prefers the bottle.  We will have to take it slow and see how it goes.

Now on to the home nursing saga.  We have been less than pleased with the home healthcare nurse we were originally assigned.  She was hours late on Joshua's first day at home, didn't follow CHOA protocol, and was just generally sloppy.  Well she took things to a whole new level last week when she not only didn't show up at all one day, but also lied through her teeth to me when she was giving me her "reason" for not coming.  She claimed there was a wreck on 316 that had shut down a mile of road and she pretended to be speaking to a cop while I was on the phone with her.  Wrecks and road closings are pretty easy to verify and a quick check of the DOT website confirmed there was not a single accident anywhere on 316.  Because she didn't show up, Joshua did not have his PICC line dressing changed or have labs drawn on time.  I was on the phone with the home healthcare company when they opened the next morning letting them know I never wanted to see this particular nurse again.  We were quickly assigned a new nurse that also works at Egleston and we are very happy with her so far.  

At this point Joshua is 40% towards the ultimate goal of being off his IV fluids.  At the next GI appointment in February we are hoping to have the amount of hours he is on the fluids lowered.  He is still off for only 5 hours a day and 6 or 7 hours would be awesome.

Please keep Joshua in your thoughts and prayers tomorrow morning as he undergoes his next surgery.  Thank you for your continued support of our family!!

Joshua laying on the quilt his Great Grandmother Martz made for him

Joshua on a car ride with his new sunglasses.  Josh & Dad sit in the car while Mom runs errands.