Tuesday, December 18, 2012

Peace and Prayers

I wanted to document our time in the hospital and what all went on so I can explain it all to Aiden in great detail later.  We left on Wednesday November 28 and spent the night in Baton Rouge with a friend. We got up early Thursday morning and had to be at Ochsner at 8am for all his pre-op appointments.  Finding parking was a nightmare so I dropped Ben and Aiden off and went to find a spot. The hospital had just switched to Epic EMR and no one knew what they were doing so it literally took us an hour to get checked in.  After they called us back, the Anaesthesiologist came and gave him some medicine so they could get a sedated echo and really check out the heart before they opened him up.  They decided to go ahead and get the x-ray, draw blood, and the EKG. Unfortunately the doc gave him double the anaesthesia needed and Aiden had an adverse reaction so they were not able to get the echo and draw blood.  He was absolutely inconsolable and screaming as we were trying to calm him down.  The Anaesthesiologist also decided he was going to go ahead and hook up an IV line in his arm since they would need it in the morning.  I politely told him "no sir" but he refused to take it out and maker the poor nurse the enemy. Really, who wants to sleep with one in their arm when you don't have too?  We then met the surgeon, grabbed some lunch and went across to the children's center for his x-ray And EKG.  Every time he would get shut in a room he would freak out and pitch the biggest fit.  By 3 o'clock we were all exhausted. We went to our room, and gave him a bath with some speacial cleanser to get all the germs off his skin.  Poor guy was asleep by 5:30 which was good since we had to check in at 5am the next morning.
Thankfully, Oschner has a hotel called The Brenthouse that is connected directly to the hospital so it literally took us 4 minutes to get there. We checked in and waited for them to call us back.  Everything there is so fancy.  They have a TV that gives you a number so you can follow the patient throughout every phase of surgery.  We were called back to the pre-op room and waited there until the anesthesiologist arrived.  She was not pleased with the way things had gone the day before and was not sure why the other doc had given him so much medicine.  She gave him the appropriate amount and he immediately was so happy. He was laughing at everything and blowing kisses to everyone who came in the room.  Then they whisked him away.  Poor Ben just lost it.  I actually was okay because he was happy when he left and I was relieved of that.  I did reiterate over and over, he answers to Aiden, not Michael.  Worst mistake I made was putting his formal name on our insurance.  Oh well.  The surgery didn't start til about 8. There is a lot of setup required before they can began.  I am so thankful we had not only both if our parents by my sis/brother in law and Ben's aunt/uncle and 2 cousins.  They really helped the time pass.  It also kept us from talking about Aiden the whole time which was a nice break.  The surgeons nurse came and updated us a few times to let us know where he was in the procedure. As they had told us the day before, "no news is good news." Finally about 12:30, the doc came out and said they had finished and we could see him in about 45 minutes.  He kept talking about how much bigger the VSD hole was than they had anticipated.  When I asked him how big, he said that the patch he put over the hole was about the size of a dime.  That's 3 times bigger!  What had happened was that the tricuspid valve had covered up some of the hole and was trying to repair itself so you couldn't see the actual size on an echo.  The PFO hole, however, had actually closed on its own prior to surgery so only one hole was repaired.  By the time the sternum was wired shut and the chest was being closed, the left side of his heart had already shrunk half in size.  I'm sorry but that is so incredible to me! I just didn't know the heart could shrink that fast.  There was one little leak in the patch that occurred and you could tell the surgeon was really annoyed it wasn't perfect.  About 80 percent of the time it ends up closing but if it doesn't, the only consequence is antibiotics whenever Aiden has a dental procedure done.  I think I can live with that.
When we went in to see him, he looked great.  He had a nurse that stayed in his room the first 24 hours and monitored everything.  He of course was on a vent and  had a central line through his neck to his heart, as well as an arterial line in his right arm, and and iv in his left arm and foot.  Then he had 2 tubes through his stomach that wrapped around his heart and drained excess fluid and one more line through his side that had electrodes hooked up to his heart in case he needed a temporary pacemaker.  However, all that being said, it wasn't that bad.  We had to talk Ben's parents into seeing him like that. But I think once they did, it put their minds at ease.  After a short visitation, we went back to our room, showered, and had a decent meal.  We got to visit him one last time and then had to leave.  I felt okay with it because by that time, he was kind of awake and crying when he would see us and I knew we would all be miserable if we stayed. Plus, I knew the nurse would be right there if he needed her.
The following day was super long.  You just sit around all day but somehow it just exhausts you.  I decided I would stay with Aiden and to say it was a bad experience would be kind.  The morphine made him jumpy so every time he would start to sleep, he would jump and wake himself up. Then he would cry, so you would have to rub his head or hold his hand til he would fall back asleep. Then repeat, over and over.  About 9:30 that night he fell asleep and I went over to my little couch and layed down.  Thirty minutes later I hear him, look up, and he has sat himself up and turned himself around in the bed and all his wires are pulling and are twisted. I freaked out but we got the nurse and I finally got him calm.  The bad part about being in an ICU is every hour they are monitoring you for something. So just when you go to sleep, here someone comes to check you for something.  We were up literally from 10 to 4 in the morning.  Thank goodness for Baby Einstein.  Every night did get better. Ben and I alternated and soon we moved to the pediatric floor.  His tubes came out and they transported him to the pediatric floor in a cute little wagon, which he loved.  All that was required of those nurseS was vitals and medicine every 4 hours, which is a lot better than every hour.  There are several child life specialists on site and threre is a huge playroom, donated by Miss Britney Spears, that you can play in. We spent a lot of time there and a lot of time riding in the wagon.  There was even a concert for kids one day while we were there.
Tuesday morning, we had another echo and Aiden was doing so well, they let us go home- 2 days earlier than expected and on no medicines whatsoever.  Also, he went from morphine to Tylenol.  Nothing else for pain.  That also is crazy to me! Ben's parents took their motor home down so Aiden and I rode back with them and Ben followed us in his truck.  It was so nice because we didn't have to strap him in a car seat and we could watch TV and just relax.  Him and I both slept most of the way home.
A child's body recovers so much faster than ours ever could, and it's amazing how the body just compensated to try and fix something that isn't right.  I freaked out about this surgery a lot at first and Ben was fine.  Then at the end, Ben was freaking out and I felt really good about it.  That's why we complinment  each other really well I think.  But I also think I made it through because of all the prayers and words of encouragement we received. Seriously, everyone has been so kind and concerned and I think it just brought peace over me.  I knew everything would be okay, so thanks everyone for praying for us,  it meant the world.
                                                Aunt Emilea walking Aiden to the Pre-Op room.
                                                            Fresh out of Surgery.
                                              Day 3.  I think someone's definitely feeling better.
                                        Transportation from the PICU to the pediatric floor.
                                     Playroom donated by Britney Spears.  Very thankful for it.
                         Up and dancing around like nothing ever happened.  This video is hilarious!

No comments:

Post a Comment