A long overdue update

So the last time I fully wrote a blog post was in September of last year.  I did find a partially written post from January that I published even though it wasn't finished.  Why has it been so long since I posted?  Because I simply don't have the time!!  So now for an update on Everett:

I'll start with cardiology stuff since it's always the most pressing.  We found a wonderful new cardiologist here-Dr. Skimming.  He is my favorite cardiologist that Everett has had which is surprising because we LOVED his cardiologists in Dallas.  Dr. Skimming has his own private practice which means no long waits like at the hospitals and fewer germs.  Our first appointment he spent a very long time with us discussing Everett's past, how he was currently doing, etc.  He has never made us feel rushed at an appointment and takes as much time as we need to discuss, ask questions, etc.  That is something found so rarely with doctors these days.  Everett's first appointment was in January.  I assume that the info from that appointment was something that I was going to put in that post, but alas I never got around to it.  Basically, everything looked good, but his cardiologist in Arkansas had him on the wrong dose of heart medication for his weight, and that at some point it might become necessary to close the fenestration left from his last open heart surgery.  Fast forward a few months and we began to see a noticeable change in Everett's energy level.  He became fatigued more easily, was sleeping more, and was needing lots and lots of breaks when riding his bike. We also noticed that he was having sudden oxygen level dips where his skin color would go gray and his lips would turn blue, and this was happening when he was at rest and not doing any kind of activity..  We have a home pulse ox and sometime these dips were as low as in the high 60's. Of course this was concerning, so when I called Dr. Skimming's office they said to just keep a close eye on him and that they assumed his fenestration was causing the problem.  Then he began getting really bad leg pain that was keeping him up at night and sometimes waking him up after he was asleep.  Not too long after the leg pain started he began periodically getting really bad headaches that led to projectile vomiting.  Of course both of these could be diagnosed as something totally unrelated to his heart condition like growing pains or migraines (it's possible they were/are growing pains and migraines), but when you're a parent of a child with serious heart defects you think that everything is related to heart stuff and it sends you in a panic when new stuff like this shows up.

Dr. Skimming got Everett in for another appointment even though he was due to see him for quite some time and decided that we should get some opinions from other cardiologists about closing his fenestration and possibly coiling collateral vessels(clicking on the word will take you to a link explaining what collateral vessels are).  The cardiology team at Joe DiMaggio Children's met and discussed his case and were pretty split on whether or not the catheterization to intervene was a good idea.  While the fenestration did serve the purpose of allowing his heart to have a way to decompress instead of having all of the blood flow through one set path it was causing lower oxygen levels overall, and it was causing the oxygen dips whenever the blood would shunt through it instead of all going to the lungs.  In some kids these fenestrations close on their own, but Everett's didn't and with as long as it had been since he had the Fontan procedure (he was 18 months) they didn't think it would ever close on its own.   Dr. Skimming thought that perhaps his headaches were migraines that were a product of low oxygen levels, and that perhaps closing the fenestration and raising his oxygen levels would eliminate the headaches.

We made an appointment to meet with Dr. Latson, the Director of Pediatric Interventional Cardiology at JDCH. Everett had a full work-up done and then we discussed whether or not we should move forward with the catheterization.  Dr. Latson wanted to know what his oxygen levels did with exercise so they hooked him up to the pulse ox and had him step onto a step and back down three times.  During this very light exercise his oxygen level dropped to 70%.  If you know Everett you know that he is MUCH more active than this pretty much 100% of the time.  Dr. Latson said that is was his opinion that we definitely needed to move forward with the catheterization.  We discussed all of the risks associated with what would be done in the cath lab, and it was horrible, scary stuff like death, stroke, his body rejecting the new blood flow after closing the fenestration leading to him going back into the lab to take it back out or even worse having an open heart to open it back up, etc.  But--closing the fenestration meant higher oxygen levels, more energy, possibly no more headache, and a higher quality of life.  We scheduled his catheterization for July 10th.  We were super anxious about everything that could go wrong, and of course the fact that he was now old enough to be scared.  We have been so blessed that he has not had to have any intervention since his Fontan procedure in March of '09, but dealing with a surgery and hospital stay with an older child was a whole different ball game.  My mom and brothers drove down for the surgery and came almost a week earlier, so that was a much needed distraction, and Everett had a blast with them.  It was their first time here, and we miss them so much since we're so far away from them.  We most definitely could not have made it through everything without them here.  Pa had to stay home and work, so we missed him. 

The day before the surgery we talked to Everett and told him he would be going to the hospital and that he would be staying the night, but that it would be a fun sleepover with just him and Mommy and Daddy and that he could have as much ice cream and popsicles as he wanted.  He was a bit anxious, but overall handled the news much better than we expected.  We made an appointment for him to meet with the Child Life Specialists before they prepped him for surgery so that they could talk to him about everything in a way that he would understand better.  That didn't exactly all pan out as we had hoped because they started working on pre-op stuff before the Child Life Specialist ever talked to him which made me want to go all mama bear on them.  Sonia from Angel's Pediatric Heart House here in South Florida had sent him a "shadow buddy" that has midline incision and a special heart like him, so child life was able to show him where the leads, etc would go on his buddy before they were put on him.  He LOVES his shadow buddy and he deemed him "Little Everett".  They gave him some "happy medicine" that made him loopy, sleepy, and super funny before time to go back to the lab.  We walked him back and stayed with him until they had him completely asleep with the gas.  They waited to place his IV, etc until he was completely asleep which was nice. We left him at 11:25 and grabbed some lunch.  We got an update that everything was going well at around 1:25 and he was out of surgery at 2:30 or so. Dr. Latson came and talked with us and said that everything had gone very well, and seemed a little surprised at how well his body had responded to the closing of the fenestration.  They coiled a couple of larger collateral vessels while they were in there as well.  He said that he had two leaking valves (we already knew about one), but that they weren't necessarily bad as they were allowing his heart to decompress in a similar way to the fenestration, but without lowering his oxygen levels.

Chance, Anderson, and I went to see him in the ICU once they got him all settled and of course he looked pitiful.  He was extubated, but they did have something down his throat to keep his airway open which I've never seen before.  We went and got mom and the boys from the waiting room when we got the go ahead to have all of us in the room.  We were told that he was still under some of the anesthesia and that they started IV sedation (Precedex) even though they usually don't for this procedure because they knew how active he was (after a catheterization you have to lay completely flat and completely still for 8 hours to keep from bleeding out).  We were told that as he came out of the anesthesia he might open his eyes, but that the sedation meds would keep him from totally waking up.  Boy did he prove them wrong!  Not even a half hour after we got to his room he woke completely up, sat up, and started kicking his legs tugging on his IV.  He said he wanted the IV out and that he wanted to sit up.  Mom and the boys left with Anderson hoping that he would be able to settle down with fewer people in the room.  His oxygen levels were higher than we've ever seen them without oxygen!  They stayed between 95-99% and even went up to 100% on occasion!!  Once he wasn't so groggy he was more manageable as far as having to lay down, etc, and was eager to cash in on his unlimited popsicle and ice cream promise.  He wolfed down one popsicle, and we made him wait a bit to have another.  Then he had two more, ice cream, and juice.  Chance held an ipad over his head for him to play games and he was awake for a good hour or so after eating the popsicles and ice cream.  Then he wanted me to snuggle with him in his bed and we all three fell asleep.  The rest of his hospital stay was pretty uneventful other than his requests to have his IV taken out and he wanted to go home.  The next day they did a repeat echo that showed everything was in place and looking good and an x-ray and we were able to take him home.  Once home he was super upset that he had to "take it easy" and that he wasn't allowed to take a bath.  He never took any pain meds until day three post op and he had one dose of Motrin.  He is one of the toughest people I know.  Everything went so much better than we had expected since we knew that there was so much that could go wrong.  I was super anxious about leaving Anderson as well (mom and the boys stayed at our house with him) since I've never left him much at all, especially overnight, but he did great as well!  I pumped and saved up plenty of milk and he took bottles like a champ even though in the past he has rejected them.  Everett went from half a tablet of baby aspirin to a whole tablet since he is still at a higher risk for stroke since the cath.  Other than that his meds stayed the same.  He had a check-up with Dr. Skimming a week post-op and everything looked great on his echocardiogram and he was released for normal activity which he was SUPER excited about!  We most definitely credit God for everything going as smoothly as it did with the surgery and with Anderson doing well without us (God is in the little details, too).

There were so very many people praying for us and loving on us and Everett.  Our amazing church family back in Arkansas, Journey Church, covered us in prayer and sent us a gorgeous bouquet of flowers.  First Baptist Church in Honey Grove sent us a postcard saying they were praying for Everett.  Our sweet friends the Graffs gave Everett a courage cape, and a bunch of activities to do while in the hospital.  They also brought us a beautiful, handmade quilt made by a member of their church and prayed over by the prayer warrior group there.  My fabulous friend Janille brought by a bag of frozen meatballs so we wouldn't have to cook and a cute little teddy bear for E.  My best friend Tricia and her family sent Everett the cutest cookie bouquet I have ever seen!  One cookie was decorated like a little doctor bear.  Our wonderful friends the Averitts sent Everett a few toys.  The lovely ladies who live next door gave Everett a bunch of matchbox cars and quiet activities to keep him occupied.  Tons of people called, texted, commented on Facebook, etc and I know that the other churches in HG were praying for our boy as well as other family and friends.  We are so blessed to have so many wonderful people in our lives.

Now on to the next medical update.  Since moving here we have switched to an pediatric ophthamologist here for Everett's eye strabismus.  At our first appointment he told us that Everett's strabismus does not fit into the "box" of most strabismus diagnoses(E never fits in the box.  He's usually a triangle in box of squares :) and to stop using the dilating drops and he increased his glasses prescription.  He said that Everett was borderline for needing surgery, but that he wanted to see if the stronger glasses prescription would push him over the line of not needing a surgery.  Everett picked out a new pair of yellow glasses. We went back a couple of weeks ago to see how he was doing, and they decided that he would need surgery, but that as a last ditch effort we could try bifocals and see if they would improve his strabismus enough to keep him from needing the surgery.  We, of course, wanted to try all non-surgical ventures first so we said yes to the bifocals.  Dr. Miller said that the muscle surgery that he will most likely need will be tricky because he has a v-pattern strabismus that isn't straightforward to operate on, and that it will possibly take a couple of surgeries to "get it right".  If the strabismus isn't corrected he could have problems learning to read, write, etc.  That being said he's already writing his name (and he writes it very neatly!), but that it will likely cause problems as he continues to learn to right and read.  The doctor discussed that the surgery would be outpatient and done at a local surgical center.  We had to remind him that Everett would only be put under anesthesia by a cardiac anesthesiologist to which he replied "I've never had problem getting surgical clearance for this type of surgery on a heart kid before".  We discussed with him the severity of Everett's heart conditions and assured him that he wouldn't be getting surgical clearance from his cardiologist and that he will not be operated on without a cardiac anesthesiologist.  Because of this Dr. Miller will not be able to perform the surgery as he does not have surgical privileges at the children's hospitals, but said that he would refer us to a really good surgeon and personal friend at Miami Children's if he, indeed, needs the surgery.  Everett's bifocal lenses came in quickly and he has been wearing them for a week now.  He doesn't complain about them, but when I ask him if he can see out of them he says no.  We are hoping and praying for this last ditch effort to work so that he can avoid surgery.

In other news, he starts Pre-K on August 20th.  He'll be going half days(9-12) at a local, private preschool, and he is SUPER excited!!  His cardiologist gave us the go ahead, but said that if he ends up getting sick a lot we will have to pull him out.

It is now 1:15 am, and I have been typing forever!!  If you have stuck with me and read my ramblings, bravo to you!  I'll write an update on Anderson sometime soon as he is growing and learning in leaps and bounds.