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.