Our Christmas miracle

I know it has been a long time since I have posted an update.  Every day seems busier than the next!  A good bit has happened in the last 13 days including a PICC line malfunction, a trip to the CHOA ER, a colonoscopy, a 48 hour stay in the hospital and, of course, Christmas.  Let me start by saying I hope everyone enjoyed a wonderful holiday with family and friends!  We were certainly ecstatic to be home to celebrate, especially given the close timing with our most recent hospital stay.  It was our little Christmas miracle!  And now to that story...

Last Thursday afternoon I was disconnecting Joshua from his tubing around 3 pm like I do every day.  I always check for blood return from the PICC line to verify the IV is working properly during the heparin lock procedure.  When I pulled back on the line, I felt a lot of pressure and did not get blood return.  I started making calls to the home health care company and eventually received a call from our GI nurse at Egleston advising us to take Joshua to the Egleston ER immediately.  Joshua is supposed to be off his fluids for 5 hours a day only so once he is disconnected the clock starts ticking.  Since I couldn't get blood return from the IV, I may not have been able to infuse fluids into it at 8 pm that night.  The nurse said our local ER would not know what to do with a pediatric PICC line in an infant and said it would be easier and faster to come to Egleston.  We arrived at the ER around 6 pm that evening which seemed like plenty of time to either resolve the issue with his PICC line or start a new IV so he could get clear fluids by 8 pm.  Boy was I wrong!

I have the highest regard for the CHOA Egleston NICU, surgical staff, and just about every other department, staff member, and volunteer I have encountered there so I was not worried about the care Josh would receive in the ER.  I had no idea how different our experience in the ER and overflow area on the 6th floor would be.  The admission process went quickly and we were promptly ushered into a triage room in  the ER where we would sit for over 5 hours trying to convince someone that Joshua needed to be put on fluids and admitted as soon as possible.  We received one visit from a doctor early on in the process and never saw her again.  Even after Joshua had a stool with a significant amount of blood in it and the nurse told us she would have the doctor come look at it, the doctor never stepped through the doorway again.  Finally around 10 pm I was getting frantic that Josh was still not on fluids and there did not seem to be a plan to work on his IV, I tracked down the doctor behind her computer screen and asked her what was going on.  She flippantly replied that yes, he was going to get a new IV and be admitted but she had not had time to tell me.  It still took another hour before fluids were administered and another two before we were moved to our room in the overflow area on the 6th floor.

We spent two uncomfortable nights in a tiny room waiting and waiting to have a doctor visit to tell us what was going on.  After not being able to get blood return in the ER, Josh's PICC line started functioning properly all of a sudden.  He had a chest x ray in the ER that we eventually discovered (with the help of a family friend and PICC nurse - thank you Suzi!) Josh's PICC line had moved 2-3 cm and is no longer considered "central".  It is now a peripheral line since it is in his shoulder instead of right near his heart.  The line is not out 2-3 cm at the insertion site in his arm, though, so that 2-3 cm of line is scrunched somewhere in his arm.  This is thought to be the cause of the line malfunction and the source of pain for Joshua when the line was being flushed - it is a positional issue with the line that could easily come back again.  Right now the line is working well, but I am so worried we are going to have the same problem again and there is no way to predict when that will happen.  I absolutely do not want to go through that terrible ER experience again!  At least this time I will know I have to be specific and forceful in my attempts to get what I know to be proper care for my son.

We have had multiple nurses and doctors recommend having Joshua go through surgery to have a broviac chest tube inserted.  The broviac is a more stable and better long term option for Josh since it is surgically implanted.  Once Josh starts crawling, the PICC line placement in his arm will be a real problem and subject to even more wear and tear.  The current plan is to wait until the next sign of trouble with the PICC line before scheduling the surgery for the broviac.  We have our first appointment with the GI clinic on January 4th where I will bring up the subject so we can try to make a plan (never an easy thing to do with Josh).  The surgery is relatively simple, but does require sedation and, therefore, another overnight stay.  Joshua was completely at ease being back in the hospital, the little turd :)  He was smiling and cooing at all the new nurses - just winning over more hearts!  He is a real ham and is accustomed to being the center of attention.  Many of our NICU nurses came to visit and that was a nice treat.

Now on to the other issue we have been dealing with for a few weeks - unexplained blood in Joshua's stool. The GI doctor had already suggested he have a colonoscopy and once Josh had a bad bloody stool in the ER, they decided to schedule it for the next morning.  I walked Joshua to the operating room again which was an eerie feeling.  The last time we waited in the same room was in October when we were devastated by his short gut diagnosis after his ostomy take down surgery.  I knew in my head that the colonoscopy was a simple, low risk procedure.  But it still made the hair on my arms stand on end to be in that room again and watch my baby be wheeled through the operating room doors.  I waited in our room for Joshua to be brought back after the surgery.  He returned in a few hours and in a very cranky mood (understandably).  Josh had missed two feedings by that time since he wasn't allowed to eat before the surgery.  Once they let me feed him he was my sweet, happy boy again.  The colonoscopy showed irritation in the lining of Josh's rectum.  A biopsy was taken and we are still waiting on the results.  I think the holiday really slowed things down because we expected to know something days ago.  The current thinking is Josh has developed a milk protein allergy which is very common in babies and especially common to short gut babies.  The dairy I ingest is passing through my breast milk and is causing irritation in the mucosal lining of Josh's colon.  This has not been confirmed by the histology report, however, the one GI doctor we saw is fairly certain dairy is the cause.  A bacterial infection was essentially ruled out because Josh's stool samples came back negative for bacteria two weeks in a row and he has no other clinical symptoms of an infection.  Josh was released on Saturday and we rapidly made our way out of the hospital and back home!

On Friday afternoon I reluctantly started on a non dairy diet.  So far I am stumbling through it and trying to figure out what I can still eat that I enjoy.  Removing milk, cheese, ice cream, and butter from my diet is a difficult pill to swallow.  The even tougher blow is not being able to use all of the stored milk I have in the freezer.  This is such a source of stress for me because I am not able to pump enough to keep up with Josh's needs on a daily basis so having the stored milk was a very reassuring resource.  Every hour of every day I constantly think about milk supply.  I live in 3 hour increments getting from one bottle to the next, patting my back that I had enough milk for that bottle and then immediately shifting to worrying about getting enough milk for the next.  It is physically and mentally exhausting!

Joshua continues to flourish at home so all of the above is rendered inconsequential in the big scheme of things.  He is growing rapidly, laughing and smiling all the time, and learning new things at a very quick pace.  We are overjoyed by having him with us at home and knowing he has adapted and is enjoying his new environment is incredibly comforting.  I will have to write about our Christmas in a separate post since this one is already pretty lengthy!

Pictures my sister-in-law, Anne, took that I have been saving until after Christmas gifts were opened:

Home Sweet (BUSY) Home

Being discharged from the hospital on Tuesday went more or less as expected, it was super busy and quite stressful.  Joshua received his 4 month immunizations, David made multiple trips to the vehicles with all of the stuff we amassed in the hospital room, and I finished paperwork and trained on proper technique for administering Josh's fluids.  Josh was disconnected from his fluids at two and we said our goodbyes to the wonderful staff at Egleston. 

Saying goodbye to Nurse Brittney

 

 

Nurse Nancy & Nurse Brittney - two of Josh's favorites!

The ride home was uneventful - Joshua fell asleep almost immediately and stayed sleeping the whole way.  The night turned into a very stressful experience because our home healthcare nurse was late and Joshua ended up being off his fluids an extra hour and 20 minutes.  This was not the way the carefully laid plans were supposed to go.  I was frantic by the time the nurse got there claiming traffic and getting lost made her late.  Being at Egleston we received top notch medical care at the snap of a finger, being at home at the mercy of home health nurses is a completely different experience.  I kept saying I wanted to be in control and now that I am, I realize what a massive responsibility it is.  I was on the phone with our Egleston nurses multiple times that night.  On top of this, we were not able to find the type of Immodium Joshua is supposed to take.  After trying 3 different pharmacies, we decided to give up the search until the next day.  I was worried about how Joshua would accept sleeping in his new crib and room by himself.  The worry was unnecessary, as soon as I laid him down he rolled on  his side and went right to sleep.  It was like he knew he was where he was meant to be.  He slept for 12 hours straight besides feeding and diaper changes every 3 hours.

Now that we are at home the schedule seems to be as busy as ever.  There are almost as many things that need to happen here except now I am in charge of it all.  Every feeding, every bath, every fluid change, every temperature check, etc. I am getting about the same amount of sleep now as I was in the hospital, although it is a quieter environment to rest in.  We did not completely get rid of the beeps, Josh's two pumps for his fluids beep for the same reasons they did in the hospital - occlusion, air in line, low battery, and infusion complete. 

The home healthcare nurse came Tuesday, trained me on Wednesday, and I have been on my own hooking up Josh's fluids since Thursday.  It is a little nerve wracking.  I have to inject four different solutions into his TPN bag, set up and prime the tubing, set up the pumps, hook up the tubing to the pumps, and connect the tubing to Joshua all done in a sterile manner.  It takes about an hour from 7-8 every night. 

Today we went to Joshua's first pediatrician appointment.  It was a good thing, too.  Josh had a small amount of blood in a stool this morning which really had us worried.  This was the first sign when he had his malrotation episode so we have very bad memories about this particular symptom.  I was on the phone again with contacts in the NICU and short gut clinic at Egleston.  I emailed a picture of the blood and received the good news that the doctors were not very concerned because Josh was acting normal and did not have a fever.  We took a stool sample into our pediatrician and will follow up with Egleston next week if we see any more blood. 

Being at home with Joshua has been amazing!  The five hours that he is off the fluids is unbelievable, it is a little sad to hook him back up every night.  But, we are figuring things out and taking advantage of his freedom as much as possible.  Today was the first time we left the house with Joshua and it went well.  His pumps are in two pouches that can be carried pretty easily.  We can leave with Josh, but we are hesitant to bring him around too many people right now.  Maybe we are just enjoying our time together as a family too much right now to want to share him. 

Preparing for HOME

Our week started with the head neonatologist confirming we would be going home soon, just not this week.  She let us know it would take time to set up the home healthcare equipment we will need and get us trained on it so trying for this week was pushing it.  I understand what she means now because there has been so much back and forth between our insurance company, the nursing staff, and multiple home healthcare companies.  They had to find out what our insurance would cover then identify a company that could provide the supplies and nursing care we need.  In the end it sounds like we will receive weekly nursing visits to deliver our supplies, draw a blood sample, and help me with the PICC line dressing changes.  I will need to know how to properly change the dressing in case it comes off during the week since it has to remain sterile at all times.  I will also be responsible for disconnecting, reconnecting, and administering Josh's fluids every day.

Now that the doctors have decided we can go home, the flurry of activity this week has been at an all time high.  I have met so many new people I can hardly keep them all straight.  I saw the GI specialist, Dr. Romero, and his team including a social worker and the nurse coordinator I will be working closely with for Josh's outpatient care on Monday.  Dr. Romero confirmed my suspicion that Josh will most likely need the PICC line and the TPN nutrition until he is 12 to 18 months old and follow up visits will continue for many years.  The inpatient hospital portion of this ordeal is coming to a close, but we still have a long way to go to get Joshua to the finish line - a perfectly healthy vibrant child.

We had a few big developments at the end of last week.  Joshua was cleared from isolation and contact precautions since all three cultures last week came back negative for MRSA.  He is officially MRSA free!!  He can now go outside his room, but not outside of the unit because of RSV and flu season.  We'll take the small freedom.  Josh also started coming off the TPN, at first for two and now for four hours a day, which means he is disconnected from the PICC line tubing so I can carry him around.  I almost cried when I was able to hold Joshua and walk him up and down the halls of the NICU.  I have never been able to walk around and carry my baby freely outside of a 3 foot radius of his IV pole.  It was exhilarating.

The target date for Josh's discharge is Tuesday, December 11th.  It will be one busy, stressful, liberating, amazingly gratifying day.  Josh is scheduled to be discharged around 2 that afternoon and we will have a 4 hour window to get him packed in the car, drive to Athens, meet the home healthcare nurse, train on how to use his new equipment we have never laid eyes on before, and get his fluids administered by 6.  I would say I should sleep well that first night in my own bed, but it will also be the first night Joshua has spent without being hooked to a heart rate monitor with a doctor within arms reach.  I may not sleep a wink.

As we prepare to conclude our stay at Egleston, I have been reflecting on the things I will miss and the many other things I will not.

Things I will most certainly NOT miss (besides the glaringly obvious watching my child suffer, waiting in agony for surgery results, etc. etc.):

*The horrendous parking fiasco that is the CHOA parking deck.

*Briarcliff Road- oh, how I despise thee.  I cannot wait to get back Athens traffic where you only have to worry about it 6 days a year (and what a glorious 6 days they are). 

*ZERO privacy.  There is always, I mean always, someone coming in your room at all hours of the day and night. You have no personal space.

*The pathetic excuse of a bed that is the hospital "sleep" chair.  I have been sleeping on a hard 24" wide  surface for a third of a year.  I would pay good money to take an ax and a blow torch to it upon our departure.

*The incessant, sanity-jeopardizing beeping that happens all night long while you are trying to sleep on a hard 24" wide surface.  Sleep deprivation is a powerfully dangerous thing.

*Lack of control over basic things like when you give your child a bath and when milk is warmed for him.  I will be so glad to manage my own milk supply - it is my bodily fluid after all. 

*Cafeteria food.  You would think a hospital would have healthier options.  There is no baby weight being lost while eating this crap three times a day.

*Lack of exercise.  I cannot wait to say goodbye to this sedentary lifestyle and get back to the gym and taking the little guy on walks outside.

*Public showers.  I went from taking two showers a day at home to only three a week under a little trickle of water with my flip flops on.  Then I have to walk back through the hospital with wet hair and soaking shoes.  Not the enjoyable, stress relieving experience it used to be.

*The pitiful laundry room that started out with 4 washers and dryers, but now has only two working machines.  You have to take knobs from broken machines to start working ones and there is always a wait to put your wet clothes in a dryer.  And it turns out babies go through a lot of clothes so you need to do laundry all the time.

*Elevators.  I feel like an idiot standing around waiting for a mode of conveyance when my legs would do perfectly fine.  I am also so tired of the lack of elevator etiquette in this place.  Exception - for the month after my c-section elevators were definitely my friend.

*Having to call a receptionist to be admitted to see my son.  Anytime I leave the NICU, I must call to receive authorization to return to the unit.  It gets so old.

*Limited TV channels, no DVR (how did we survive before it), and no comfy couch to watch TV on.  

Things I will miss:

*The daily interaction with our wonderful team of primary and associate nurses.  They truly care about Joshua like one of their own family and I will dearly miss my comrades in arms.

*Having immediate access to skilled physicians and surgeons.

*Meeting other parents that can relate to your experience.  They help make the long days in the hospital a little easier to get through.

*Being wowed by the kindness of strangers.  There are so many volunteers and benefactors that make Egleston possible.

*Having frequent visits from family and friends.  Being closer to my loved ones has been incredible.

*Free late night frozen yogurt in the cafeteria.

*Having only to stick my head out the door to have someone bring me more diapers.  My sister-in-law asked where we bought our diapers and I had to answer that we haven't had to purchase any yet.

*Always knowing Joshua's heart rate.  I have come to depend on that feedback to know exactly what physical and emotional state he is in.  

I will leave the hospital knowing I did the best job that I could for Joshua under the circumstances.  There have been many bumps along the way, but I am proud of my willpower, endurance, and sheer determination to get through this ordeal.  I will not take the little things for granted and I will fully appreciate each and every day I spend at home with my family.