What a difference a diaphragm makes...

We have been home from the hospital for just over a week now. I'll go over the whole hospital stay and the differences we've noticed post op.


Wednesday August 7th. Surgery scheduled for 3pm. We had already been pushed back once already on timing and we should have known we were in for an adventure. We were to arrive at the hospital at 1pm to start all of the paperwork and meet with the doctors. About 30 minutes after checking in we were informed the surgeon was running late and he continued to run late until Eli finally got into the operating room around 6:40 pm. The surgery was expected to take about 3 hours and he would get a room in the PSHU  (pediatric surgical heart unit) afterwards. The surgeon came out a little bit before 8pm and said everything went great and "it was just a big ole hernia that I pulled down". He also put a few stitches into his diaphragm to put it back in place.

Around 9pm we were finally able to go back into Eli's room and get the run down on all of his tubes and wires and find out his recovery status. This is when Dr. Sajan, the doctor running the PSHU that evening, told us the surgeon had drained 300 cc's of  "milky" fluid from Eli's chest cavity. Say what!?!?!? The surgeon made no mention of this to us and clearly didn't think it was a big deal because he didn't bother to save any of the fluid to send it to the lab to be tested. For those of you who don't know 300cc's is 10oz, the size of a typical baby bottle, just floating around in Eli. I was shocked and scared and not sure what to think. Fluid retention is a HUGE deal after this last heart surgery Eli had. We needed to find out why and where this was coming from.

Rafe and I had already secured a room at the Ronald McDonald house across the street from the hospital. We were just settling in for the night when Rafe's phone rang with Dr. Sajan on the other line. Trust me when I say you never want to see that phone number (we have it saved) show up on your caller id, especially at 10:40pm. Eli's left lung had collapsed and he had a huge air bubble in his chest. We verbally agreed to allow them to put a chest tube in Eli immediately so they can get that air and any possible remaining liquid out. We were warned the lung collapse was a possibility because of all of the fluid they had already drained and just the shock on his lung. His left lung had been drastically smaller than the right one since at least April.

We received another phone call from the PSHU about an hour later saying Eli's lung had popped back open and he was now "satting" at 100%. YAY!! Satting is what we call the oxygen saturation in his blood. Most people are about 97% or higher. Eli has always been around 80% up until his last surgery and he only bounced up a little after the Fontan.

Eli had a few rough days in the PSHU but not anything super major. Sunday afternoon we moved down to the second floor in Hope where it's general care. His chest tube remained in until Wednesday afternoon because it was still draining a good amount of fluid from his chest. They were checking to see if the "milky" fluid ever came back and thankfully it didn't. I guess if it did Eli's whole entire diet would have to be overhauled and everything would have to be fat free. Friday afternoon we were on our way home! No restrictions on food, crowds, lifting or anything!

The first few days Eli didn't really want to walk or move around which has been typical of him after surgery. He is now back to his normal self minus the amount of walking he does. He is very scared of falling and causing himself any pain. He now eats like a true boy and we couldn't be happier. He is now able to burp and throw up (yay?) since this surgery. The Nissin surgery he had done at 1 month old to prevent acid reflux had to of come undo. Eli isn't too thrilled with the feeling of a burp coming up but I'm sure he much prefers it over the rock hard stomach he would have until he was able to fart that air out.

Tomorrow morning we have 2 appointments at Hope and we have to get blood work and xrays done before hand. So we'll get to the hospital at 10:15, do the lab work and xrays, 11:15 post op appointment with the surgeon. That will be a quick 15 minute appointment. We'll have to go out to lunch or something because we don't have our next appointment until 2 and that's with cardiology. Those appointments we always figure will be at least 2 hours long and almost also include some sort of test. Wish us luck and tons of patience!

Surgery #5

We have a surgery date!!! Eli will be going in for his hiatal hernia/ paralyzed diaphragm surgery on Wednesday August 7th (yes like in a few days).

We had our 2nd surgery consultation yesterday morning at Hope and this time the surgeon, Dr. Lobe, was actually prepared and ready to talk surgery. He came in, looked over some papers and spit out the game plan at us. We agreed and we were on our way within minutes. The nurse was trying to schedule us for sometime in September for when the doctors next free day was and he insisted we get in next week. Something must have clicked with him and he realized that it was me who called the cardiac surgeon on him to get this ball rolling because he was very apologetic and actually placed importance on us. 

So let's talk medical......the surgery the doctor is doing has three possible approaches towards it, I'll explain the best I can. Due to Eli's obvious medical history and his freshly worked on beautiful heart of his, the doctor is going to try the least invasive way of surgery. He wants to mess with Eli as little as possible and put the least amount of strain on his heart. The technical name is thoracoscopy repair of a thoracic (hiatal) hernia. This means he will be going into the chest cavity around the rib cage with a tube and will try to expand his chest and fix everything that way. If that doesn't work he will try to do the surgery laparoscopic surgery which will be a few small incisions.  If that doesn't work Eli will be having his stomach opened for a second time, we are hoping it doesn't require that. I would bet that it ends up being the 2nd shot at it that really works. I did hear the doctor say to put him down for a 3 hour surgery. I asked about recovery time in the hospital and the doctor kinda was hesitant to say because we aren't sure how in depth this surgery is going to get. His answer was anywhere from a few days to a few weeks.

I will admit I'm pretty nervous about this surgery, as I am with any surgery but this seems to be a whole different area for me. Eli has had stomach surgery before when he was a month old and I didn't make a big deal about it then. I also didn't realize how big the scars were going to be and that his g-tube site would end up looking like a second belly button. I call this a stomach surgery but it's in fact in his chest cavity, but since they aren't cracking his chest open again its different. Does that make any sense? Maybe because I feel like this hernia has had a huge impact on his stomach i.e. his lack of weight gain since November, his small little appetite, the way his stomach gurgles like crazy as water is going in. Oh well I'm rambling now.

So Tuesday night I'll be getting a call about what time surgery will be and what time Eli has to stop eating and drinking (always a blast!). I'm hoping because his surgery seems pretty difficult compared to this doctors usual circumcision (I saw his schedule was loaded with them) etc surgeries that we'll be put in an early time slot. So wish us luck, send us prayers and good thoughts! My little man is a tough little cookie but he hates doctors and hospitals now and it breaks our hearts. I will update as soon as possible!