Follow Up

After the hospital stay, we've had a lot of follow up appointments and care.
The day that we left the hospital a nurse came from our nursing service to teach us how to use Benton's PICC line.  The PICC line is like an IV, but it can stay in around 2 months instead of just a few days and instead of just a needle and tube in the arm, it has a catheter running all the way to his heart.  Keeping it clean and sterile and dry is especially important because an infection right to his heart would be bad.


I then began the process of getting into a medication schedule for the next 6 weeks.  There was a little flexibility, but basically the schedule looked like this:

7:30am-take out Benton's meds to warm up.
8am-oral and IV antibiotics
9am-remove IV
12pm-oral
4pm-oral and aspirin (a chewable tablet he was really good at taking)
7:30pm-take medicine out to warm up
8pm-oral and IV
9pm-remove IV

Benton has done well with taking medicines overall.  The syrup he liked the least, but at least it only took two days before I got the advice from my SIL Lauren to take it back to the pharmacy and get flavor added. Every time I went to give it to him he would run away giggling thinking it was a funny game.


Once each week a nurse comes to change the sterile dressing (twice we've had to call and get them to come out sooner because it starts coming off, and they always take too long to come).  And once each week we get a delivery of medicine and supplies.  He got used to the dressing changes after a few times and went from having to be wrapped in a blanket while he cried to sitting still in his highchair patiently watching the process.


This is what the PICC line looks like when it is wrapped.

And unwrapped.

Observing so patiently as she rips off stickers, cleans with stinging alcohol, etc.

 These pictures are of the surgery side of his head.  The stitches are pretty much absorbed.

Much better than how it used to look!

This is a "party ball".  When I do Benton's IV I sterilize the tip of his tube, flush it with saline, then screw in this party ball, unclamp it, and it automatically drips the medication for an hour.  Then I disconnect this, flush his IV with saline and heparin (to prevent clots in the tube), and clamp it until the next time.  The party balls are single use and we have a bag of them in the fridge.

 When the ball is attached, it hangs, as you can kind of see in this picture.  We tried to keep him in hoodies so we could put the ball in the hood, or pants with pockets, onesies, things that would hold the ball so he didn't have to sit still for an hour and I didn't have to follow him around carrying it.

Two days after our hospital stay we had a follow up with the pediatrician.  He hadn't even gotten Benton's chart, so I got to retell him the story and watch his amazement that this actually happened.  He basically said, "Keep up the good work, see you for his 18 month well check."

Saturday morning, 3 days out of the hospital, was moving day.  Our ward friends were set to arrive at 8am, the same time as Benton's medication, and I couldn't get anything to go into his PICC line.  I had to call the nurses and they came out 2.5 hours later to help me get it cleared (during the move).

During the whole move (and weeks leading up to it) I was really paranoid about anything being left unsecured because when my brother was 2 he found an unsecured bookshelf during a move, knocked it over on himself, and spent months in the hospital.  I helped very little with the move and just stayed with Benton.  After everything was moved and Benton and I were the only ones left in the house (Ethan was still at my mom's) I was relieved.  I grabbed my phone and started to check messages as I followed a little behind Benton through the house.  Within a minute of everyone leaving, Benton had turned a corner before me, and I heard a loud bang and crying.  I ran to the laundry room and Benton was sitting on the ground with the door laying over his feet.  It had been taken off of its hinges to get the appliances out, and we all missed putting it back on.  I picked Benton up and his front incision had fresh blood.  I was really scared about it and called the nurse that had just left.  She gave me instructions to rinse it off and go to the doctor on Monday.  There were only a few drops of blood on his head, but I still wanted him to see the doctor.  I started driving to the hospital and spoke to an insurance nurse and left a message for our neurosurgeon.  After an hour there was a little swelling under the incision too so I went into the ER (I was sitting in the ER parking lot waiting for a call back).  Our surgeon was there and he came down and said everything looked fine and he wasn't even going to bother with a CT scan.  After that I also noticed an egg on the top of Benton's head.  The ER doctors ordered a CT just to be sure.  Everything looked fine and we came home.

Skip ahead to that night when I went to do Benton's night time IV.  Because of the delay in the nurse coming in the morning, I had to wait until 10pm to do the night time IV, and it wouldn't work.  I called the nurses and the soonest they could come would be 2am.  This was past when his meds needed to be administered, and if they couldn't get it to work, we'd still have an ER trip.  So, I woke Benton up and we went back to the ER.  They changed the tip on his PICC line and we were good to go.  I think we got home around midnight.

2/27 I had a follow up with the Neurosurgeon.  After a 30 min drive, plus 20 more minutes to find the right building and get Benton and Ethan (who was throwing a fit) into the office, I found out they had accidentally put it in the computer as 3/27 instead of 2/27 and there was no one who could see us.  My aspirin ran out that day and they were supposed to tell me whether or not to continue it, so they sent me to Walgreens to get more (where the pharmacist was not happy that I was buying aspirin for a child).

3/1 Back to the Neurosurgeon.  The resident saw us and said he still looked like he was doing well.

3/8 ENT-At this appointment we were told that Benton's surgery ear looked like nothing ever happened, except the tube in it, and that his hearing was fine on that side.  The other side, however, still had fluid behind it and that was limiting his hearing.  Dr. Gujrathi said Benton would most likely need a tube in his other ear, but that we could wait awhile.

3/11 MRI/MRV-We had a heck of a time getting this scheduled, but we finally got it set up for 7am on a Monday morning.  That means we had to be at the hospital at 6am, leaving at 5:30am.  Thanks to Wendy and her daughter, we let Ethan sleep and I got Benton up early.  Again, this was done under full anesthesia, so there was some recovery time afterwards, but he always wakes up quickly.  It was nice doing the early MRI because the no eating time was mostly while he was asleep.

3/12 The next morning we went to see Dr. Bhardwaj about the results of the MRI.  He reviewed that when this all started there was really a lot of pus in several places so they had been worried about it (1) going through one more layer and causing a brain infection which would have made him very sick, and (2) closing off the vein it had been compressing.  The MRI showed that all of the pus was gone and that the vein had opened back up to look completely normal!  Yay!  That meant that Benton could go off aspirin.  The surgeon also said he would not be asking us to come in for any more follow ups or images!  He said he remembers how scared we were that night, but that William was going to be okay (he never caught on that we call him Benton).  He also said that when our oral antibiotic ran out (it was about to) we didn't need to worry about refilling it.  We had been told previously that Benton would have an MRI probably at 3 months and 1 year, so we were happy to hear that he was already cleared.  This MRI was scheduled earlier than 3 months because they didn't want to keep him on aspirin longer than necessary (risks of Reye's syndrome).

3/13 Benton had his 18 month check up.  He's looking good and not needing more appointments.  They didn't give me his stats, although I should be able to just rattle them off after having him measured SO many times.  He's about 26lbs and 26 in tall I think?

We are now waiting for orders to remove Benton's PICC line from the pediatrician.  It should be Friday or Saturday at the latest.  He'll then need a bandage for 24 hours and will be medicine free!  Plus, he can wear short sleeves (we put him in long to keep him from messing with his tube), take a bath, swim, etc.!!!