Trip to All Kids - Part 2

The trip to All Children's Hospital in St. Petersburg is "Part 2" of the story in a couple of ways.  It's the second entry of my blog regarding this and our second trip to this hospital.  Jared spent three weeks there after he was born and as a result, I have avoided any trips to the West coast of Florida since. That time in my life has too many stressful memories.

Our second trip to St. Petersburg did not go as planned but I believe it went the way it was suppose to go.

The plan was to leave for St. Petersburg early Thursday, July 12th for Jared to be admitted the day before the procedure for what is called a "Drug Wash".  During a catheter ablation, the electrical signals of the heart must be mapped to find the faulty path. In order to do this, an SVT is induced. Since Jared's drugs are meant to stop SVTs, all his medications needed to be flushed from his system. For this to happen, we were instructed to stop his medications on Thursday morning and it was decided it was best to admit him as soon as possible just in case.  We also had made arrangements to stay at the Ronald McDonald House as soon as we knew what day we would be arriving.

On Wednesday, I called (as instructed), to confirm our reservation at the Ronald McDonald House and was shocked to find out they had no availability. This sent us scrambling for a Plan B.  Being Summer in St. Pete, hotels were hard to find and not near enough to the hospital.  We realized that our only real choice was to divide and conquer.  Chris and I have never really been separated, much less our whole family; this was not an easy decision but in the end it was the right decision. The new plan was for Chris to drive over with Jared and for me to stay here with everyone else.  Having only one car, once we started this plan we were committed.

The next challenge was figuring out when they needed to arrive Thursday.  This too was a bit stressful as  it wasn't until after lunch Thursday that they told us a room would be available at 4:30pm! Thankfully, Jared didn't have any issues being off his drugs and this extra time together as a family was spent playing games, watching Le Tour, and doing artwork.

Chris told Lance he was "the man about the house" while he was gone and Lance did an awesome job.  He was proactively helpful, patient and kind.  His positive attitude really helped sweet Titus not worry since he was a bit confused about where everyone was and when they were coming home.

Chris and Jared left at 2pm and on the drive over they hit a number of traffic jams which extended the trip by 45 minutes.  This was the first confirmation we made the correct decision, as this would have stressed our carsick prone Lance and baby Amber too much.  They had given themselves extra time by leaving early and ended up arriving right at 4:30pm.

The new All Children's Hospital complex in St. Petersburg was completed just over two years ago. Ground was broken and building started right around the time Jared was there seven years ago. The new complex is just around the corner from the old location. Chris said the hospital was really nice, as was their room which was clean and quite large which included two chairs, two TV's and a sofa. One TV was large and just for the patient and one small one was by the sofa and for the parent. The "TV" was more of a computer monitor, as the patient could play games, watch movies, even surf the web and use instant messaging.
From their window, they could see Tampa Bay and Tropicana Field (home of the Tampa Bay Rays baseball team).

Being an ICU room and seeing all the gadgets, tubes, and switches on the walls it was definitely better the mighty Titus wasn't there.  Jared had pizza and Doritos for dinner; we figured what ever he wanted.  He and Chris had some great bonding time that night.  Jared slept well, but poor Chris didn't sleep much on the pull out sofa. Hospitals are not the place to find a good night's sleep - too many people moving about and alarms sounding.

Back at the ranch, we hung out at the house until they arrived safely and were settled.  We then headed over to Miss Mae's house for dinner.  After eating, we all went for a long walk. Our walk tired the kids out and ourselves.  This helped settle everyone down for the night time routine and getting to sleep that night.  We did prayers over FaceTime with Chris and Jared. Having our iPhones has been a life saver; throughout the three days away, Chris and I were in constant contact via texting, pictures, and FaceTime. Plus when driving, I can see where he is using the Find My Friends app.

When Friday morning arrived, Jared was still all smiles.  He is such a tough and courageous kid.  He rarely complains about the IVs or the masks.  The nurse said he was even laughing as they put him under for the procedure.  The doctor was able to map the offending nerve, zap it and the surrounding area to reduce the chances of any additional faulty electrical pathways.  It was in an area of the heart that is particularly thick and hard to get to.  The procedure, in total, took over four hours and the doctor was completely wiped out when he talked to Chris after the procedure. The doctor was great, as were all the nurses and assistants. The doctor even took the time to speak with me at length after the procedure via phone.

Jared just after the procedure

After the procedure, Jared had to lay flat on his back with his legs straight for the next 12 hours.  With the numerous movies available on the TV and in combination with his iPad, Jared was more than thrilled to watch shows all day. Jared did fantastic and followed instructions well.

We need a bigger boat!

Jared slept well again that night, but with nurses coming in to monitor Jared's condition all night, Chris' sleep was interrupted much of the night.  I've always believed hospitals are the worst place to recover.  Saturday was a day of hurry up and wait to be released. To pass the time they built Legos and played games together on the iPad.  They finally got the go ahead to home in the afternoon and arrived at our door around 5pm. Chris decided to drive home a different way, over the Sunshine Skyway Bridge to avoid Tampa. It only adds about 20 minutes to the drive and Jared was thrilled to drive over such a large bridge.

To keep things as normal as possible, we went to swimming lessons on Friday. Since Chris had the car, I decided to try Amber out in the bike trailer. It worked well so Saturday I went all out (or overboard depending on your point of view).  I decided Lance, Titus and I should bike around the lake, which is a 4.5 mile round trip from our house.  I knew Chris had taken Titus before on his bike but what I didn't know is that I pushed the pace a bit more than Chris does, oops!  Lance didn't tell me this till we got home.  But my goal of making sure they got the wiggles out was accomplished. Titus was completely wiped our for the rest of the day. Very unusual.

When they arrived home, Jared looked exhausted as did Chris. They were quite the motley crew.  Between the lingering effects of the anesthesia and drug withdrawal, Jared was rather spacey for the next couple days, which was disconcerting for his parents. During his stay in the hospital, the threat of Jared having a stroke from the procedure and also his condition was discussed.  Finally when I couldn't take it any more, I had him read, recite some math tables to make me feel more comfortable it was all just withdrawals.

In addition to hopefully taking care of the SVTs, Jared's drugs were reduced down to one - Digoxin. I hope this will provide him more mental clarity and less sleepless nights (side effects of the other drugs).  

What to do next is a matter of opinion. The next step(s) in his treatment are: having another procedure to plug the atrial hole in his heart, which is what makes him "blue", and/or a valve replacement. The doctor that performed his procedure assured us his associates in that specialty were quite capable and we should think about doing something in the next few months.  However, when we spoke with Jared's cardiologist here in Orlando, he indicated that the next step would be to go to the Children's Hospital in Boston and only when the time was right. He has been in contact with Boston since Jared was a baby and the prevailing thought since his birth was to do something invasive only when absolutely necessary. We pray that they can come to an agreement that is the best for Jared and his future.

I am forever thankful for our friends the Paray's who having been hanging out with us or us with them since Chris left.  They fed us, entertained the boys and kept me company the last two days. It made a difficult situation much easier.

We serve a mighty God and I am thankful for His love and Grace, not only has he healed my son but he's taught me to lean more on Him when everything is out of my control.  Thank you all for your prayers!