Saturday, June 7, 2014

MRI & Catheterization Day and Update

We arrived at The Children's Hospital of Philadelphia at 5:30am. I can say I felt some anxiousness but Eli seemed ready to go. After taking care of intake they took us back to Eli's room for the day. The night before we had given Eli one of his toy gifts, a Hot Wheels Car Wash, which he loved. All morning long he had been asking for more cars to go through his carwash. He asked one of the nurses and the child life therapist. Once we got him settled we gave him another present - more cars. He made himself right at home.

Once everything was set they gave Eli some "giggle juice". It seemed to be pretty awesome. We got some great video of him just relaxing and trying to talk. Basically, it made him really calm and almost put him to sleep before they put him on anesthesia. 

From there they took him back for his MRI and Heart Catheterization. The main purposes of the day was to get better pictures of the functionality of Eli's heart as well as the measurements of pressure and blood flow. Also the doctor wanted to make sure they had all the information that they needed going into his open heart surgery. Everything lasted about 4 hours. 

We met with Dr Glatz afterwards who was really happy how everything looked and went. They showed us some incredible pictures and video of Eli's heart and blood flow. We feel really blessed with how great Eli is doing. His valves, heart function etc all looks great.  Eli has three holes in his heart. For normal hearts, holes are not good. For Eli his heart depends on it. Part of what they looked at during the cath was looking at the size of his top two holes (vsd). Dr Szwast and Dr Glatz both think that the size of the holes are good. That is great news. That means it looks like Eli will NOT need a pacemaker!! 

Eli did great and because they did not have to do any additional things during his heart cath they discharged him that evening. From there all he could talk about was going to a park and riding swings. We found a local spot - Franklin Square where we rode swings and drank milkshakes. Overall it was a great day.

I will probably mention this multiple times over the next 2 to 3 weeks and that is how incredible the staff has been here at CHOP. As hard as it is to be away from our home, we know this is the right place for Eli.

We have had 2 days to recover from everything. With our only trouble being the removal of band aids and lead "stickers" as Eli calls them. We have gotten all of them off but one and have even resorted to trying to take them off in his sleep. Anyways, yesterday we were informed, because of a scheduling issue, we will be changing the surgery date to Monday, June 9th. We have to be there at 9:15 AM with surgery starting around 10:00 AM EST. The surgery should last about 4 hours. Because of the change we were able to go today to the hospital and get a tour of where we will be and how everything will happen on Monday. Eli was able to see the room that he will be in. He is really excited about having his own TV and remote. He also seemed really excited about being able to push a button and a nurse will come get him whatever he wants. Here are a couple pictures from the playroom where Eli can go after surgery. 

Eli played for a while and loved all the toys. The idea is to get the him to see how much fun the playroom is so that he will want to get out of bed after surgery and start the recovery process. 

Part of our time yesterday with the child life specialist was spent playing doctor with some "special patients". Again the main reason is to get Eli to understand what he will be going through. I think Eli saw it as a way of getting back for the bandaids and stickers because he covered his patient with them. 

We just want to say that we have been completely overwhelmed with the love that you all have shown. Between the prayers and text and everything else we feel extremely blessed. 

Some of you have asked us how you can help. Our friends, Mark and Jill Roberts, have set up a donation page. This will be used to cover expenses like Eli's deductible, travel and medication. The link below will get you to the donation page. Again, we are overwhelmed already by the support that we have received and thank you all so much.

No comments:

Post a Comment