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.