Thursday, May 2, 2013

Day 15, Post Op Fontan (May 2)

Last night was one of our toughest nights.  He cried all night for a bottle.  He couldn't have anything after 11pm so we had let him eat anything he wanted through the evening.  He had lots of bites of things (one bite of this, two bites of something else, etc) and also had a tube feeding going until 11pm.  His procedure was scheduled to start at 7am, so nothing after 11pm.  It was a long night.  We've been begging him to eat for days and now when he is begging us for something to eat or drink we couldn't give it to him.  But as Sara (surgical nurse practitioner) pointed out, him asking for something is a good sign that he's feeling better. 

He was scheduled to have a chest xray just before going to the OR.  When we tucked him in last night we thought the spot on his chest was looking bigger than it had earlier in the day.  When this morning rolled around he was still covered up and we didn't see it.  The xray tech asked Bryan to hold Eli up a little so she could slip the board under him.  When she put the light on him we noticed his blanket was saturated.  I pulled it down and saw that his incision had opened in an area and fluid was leaking out.  Most likely, it had increased in size overnight and the pressure put on it when Eli was held up for the xray caused it to rupture.  While Bryan and the tech finished the xray, I got his nurse.  She came in and decided to call Sara just to let her know.  It obviously still needed to be opened up, but it was just strange how our day started.  I was able to get his blanket into the washer before we left and miraculously it came totally clean!  We knew it was chancy to bring personal items to the hospital, but you've got to have some familiar things around!

We were taken to the OR area where we've had to leave him for his three open heart surgeries.  It was comforting when we found out his anesthesiologist was Dr. Harrison.  He had Eli for his very first surgery and his G-tube surgery.  Eli was given some medicine (Versed) in my arms which made him relax.  Then he was wheeled to the OR and Bryan and I were escorted to the surgical waiting area (we know the path pretty well by now and I'm not sure an escort was necessary!).  When we got the call that surgery was done we were told to go to the PICU because he was taken there so they could do some dressing changes.  While we waited, Sara came and talked to us.  Then Dr. Abraham came in. 

He said Eli did great and was recovering fine.  The infection was down to the bone.  He didn't think the pacer wires were involved so he did not remove Eli's pacemaker, but made it absolutely clear that it's something that could still happen.  He felt good about the "cleaning" he did.  Initially he was hoping to only have to make an incision about an inch long.  However, after getting in there and seeing what was happening, he had to make a much larger incision due to tunneling (not just one large "hole" but smaller tunnels leading off it).  Eli's incision is about 2 1/2-3 inches long (more than half the length of his surgical incision).  He was brought to the PICU to recover and to get a wound vac attached to him.  Overall, Dr. Abraham thought things went well but only time will tell.

In regards to his chest tube, he did not get one today.  The chest x-ray showed some fluid but it wasn't a large amount and they're hoping he can take care of it on his own.  They really want to avoid more tubes in the boy.  Dr. Harrison also worked on Eli's troublesome PICC line and he pulled it out one centimeter.  So far we've not had any problems with it & we're hoping that took care of it.

When we got to see him he was sleeping peacefully.  He had a large dressing covering most of his chest and we couldn't see anything.  The hospitalist was with him and we asked when we'd know if he was in the PICU or a few hours or if it would be a transfer.  She thought they'd probably keep him overnight, so I went back upstairs and started packing.  It was a little sad to leave our third floor room with a private mini-fridge and our own shower, but we know we'll be back in the area soon!

While I packed, Bryan stayed with Eli as he was waking up.  When I got back to the PICU room he was propped up in his crib drinking a bottle and eating a cookie (cookie courtesy of my friend Jennifer Lee who brought us treats from Paradise Bakery).  Bryan said Eli was asking for a "Blue Cookie."  At first Bryan thought it was the meds talking until he figured out Eli wanted a sugar cookie covered in M&Ms.  The boy knows what he means!  They're huge cookies and he ate almost a whole one. 

After he was comfortable and napping, Bryan and I went to lunch.  We needed to talk about Zachary.  I guess he had a rough time at bedtime last night.  He was crying and asked Mamaw Betty if he was in trouble for crying because he missed us.  Of course she told him he wasn't and tried to comfort him, but she didn't quite know what to tell him about when we'd all be together.  He loves his grandparents but he needs his parents.  We decided Bryan would go back to Washington and be there in time to take Z to his ball game tonight (he was 3 for 3 but told me he had five hits?).  They ate supper at Bobe's and Bryan will take him to school tomorrow.  Depending on how things are going they will come up here either Friday or Saturday.  Bryan will stay with Eli while Zachary and I spend the night at Aunt Ashley's.  We'll do something fun together (either three of us or four of us) before they come back to Washington.  Even though things are still busy with Eli, they're not bad enough that we need both of us here all the time.  We hate being apart and having to decide which parent goes with which child, but that's the point we're at now.  I know this time with Bryan will be good for Zachary I cannot wait to see him this weekend.  I'm also looking forward to spending the night with him :)  His snuggles can't be beaten! In order for Bryan to be back to Washington in time for Z's game, he had to leave before Eli's wound vac.  It was hard on him to leave us, but easy because he was going home to Zachary! 

At 11am Eli had to be NPO (nothing by mouth) again for his wound vac application.  When they told us he'd be sedated we thought that meant he'd be asleep again, but instead he was given Versed and morphine.  He was very groggy and out of it, but awake the whole time.  He cried but was easily soothed.  I held his hands and kissed his head a lot while the medicine took effect.  Then Dr. Abraham removed the dressing he'd placed in the OR.  Next he took out packing from the wound.  It was bleeding and he used lots of gauze pads to dry it up and assess the area.  Since I was still holding Eli's hands I had a great view into the wound.  This sounds gross and some of you may not like it but it was neat to see.  Not many people get to see in their child's chest.  I saw something silver and asked if that was one of the sternal wires (wire used to hold the breastbone back together after his surgery two weeks ago).  Dr. Abraham looked up with a smile and seemed surprised I was looking in.  When he was done I grabbed our camera and actually took a couple pictures.  Don't worry, I'm not posting them.  I took them for Bryan to see and to put them in a file for Eli to look at someday if he wants to.  The tissue looked very clean and healthy to me.  I was worried it would look infected and "drippy" (used that word in an effort to not gross some of you out with other words I could have used!)

After Dr. Abraham was done the wound vac team stepped up.  One lady put special tape along the edges of the open incision.  Then she measured and foam was cut to her measurements.  White foam that was moistened with something (didn't see that part) was tucked into the big open area.  Two layers of black foam were laid on top of that.  A clear dressing was placed over all of it.  Then she took scissors and cut a hole in the middle of the dressing.  Another piece of black foam with the vac attached to it was laid on top of the hole and a clear dressing placed over the whole thing.  The tube was attached to the machine and it was turned on.  The result was like watching an infomercial for those space saving storage bags.  The extra air was sucked out and it will keep constant suction on the wound.  The hose will drain any blood or drainage produced by the wound.  The dressing and foams will be changed tomorrow (Friday) and then probably every other day after that.  The idea is that it will remove any pus or drainage produced by the wound and promote quicker healing from within. 

As he gets used to them changing it, less and less sedation will be used.  They will judge Eli based on his response and proceed accordingly.  I want to get another picture tomorrow because I wasn't able to get one showing the wire I saw.  I don't know if I'll be able to, but I definitely want to try to add that to our collection.  After it was done I asked Sara & Dr. Abraham for a photo with Eli.  We've never done that before and it's important to us to document these two who are some of the most important people on his healthcare team.  I'll load those on another post.  Sometime I'd love to get a picture of Eli smiling with one or both of them, but that probably won't happen for a while!

Since then, he's been sleeping peacefully.  When he's awake enough to eat he's allowed a regular diet, but he's still too tired.  We gave him another dose of morphine an hour ago because it was obvious he was hurting a lot.  Who wouldn't?  A tube feeding was started for him.  Good nutrition is always important but its importance increases tenfold when it comes to wound healing.  Dietary will consult tomorrow to determine the most optimal formula for Eli and that will be given every night for at least a week.  Of course we'll encourage him to eat whenever he wants, but this will give him an added boost. 

Today went much better than we thought it could after how crappy yesterday was.  I don't mean to make light of how serious an infection could be, but I still feel that things could be worse.  Yes, we're looking at at least another week in the hospital, but at least he's able to be treated.  He's breathing and his heart is beating so we just need to keep everything in perspective.  I've also talked to Zachary tonight and it was easy to hear, even over the phone, the happiness in his voice.  He had a good time at the game, had a good time at supper, and his easy to please attitude is showing again.  

Thanks again for all the prayers and offers of help.  One of the bright spots yesterday was Bryan bringing some of the mail and packages people have sent for Eli.  Zachary has received a lot while at home and Bryan brought Eli's to us.  Eli wasn't interested in opening them, but he liked looking at the cards when we showed him.  Eli did enjoy some snacks that were in another package.  One friend in North Carolina had her students color pages and cards for Eli and sign their names.  That envelope was fun to open!  Thank you to anyone who has sent a card, care package, or note of encouragement to any of us.  The thought of you taking the time to do that warms our hearts! 

As always, remember to cherish Every Little Beat....

No comments:

Post a Comment