Three Weeks Later

I am amazed at how quickly these three weeks have gone!  Three weeks ago we were trying to pass the time while Daniel’s surgery was underway.  It is so nice to have all the worry behind us.  I can’t believe how much stress I was carrying around related to heart surgery and recovery!

When Daniel left the hospital 15 days ago, this is what his chest looked like (with electrodes still attached)…

Three weeks later, and the wounds are almost healed!

The human body is an incredible thing!  The scabby area below the main incision is from the middle chest tube, which was the first one to come out.  It must have been a bigger tube, as the mark is larger and the opening did have a stitch in it until we left the hospital.  The other marks are from the other two chest tubes and where the pacer wires were. 

Daniel is still receiving supplemental oxygen to help his heart.  I guess I never really explained that part.  When they did an echo the day before we came home, they found that the pressure in the right side of his heart is a bit higher than they want it.  Having the extra oxygen helps to bring the heart pressure down to a better level.  (Hopefully he’s getting enough oxygen.  The cannula seems to spend more time in his mouth or above his nose than anywhere else!  Pulling it out is one of his favorite things to do right now.)  It is a pain in the neck to leave the house right now, but maybe I’ll get my arms toned from carrying around the tank!

Daniel is also still taking medication to lower his blood pressure.  The cardiologist said we would work on weaning off of it over a period of time.  We should see him in a couple of weeks, so we should get a better idea then as to how his blood pressure is responding.

He is also still taking Lasix (the diuretic) to help keep fluid out of his lungs.  We go down to Salt Lake tomorrow for his post-op follow-up, and I’m hoping he’ll get to be done with it.  (It’s a bit of a tricky drug for him.  The liquid form gives him diarrhea – which is a bad thing when you’re on a diuretic – so we have to divide tiny pills into fourths, crush one-fourth of a pill, mix with milk, and give to him through a syringe.  Which means I have to think ahead!)

He came home on Tylenol for pain, and hasn’t had a drop for at least a week.  Isn’t that amazing?!?!  Like I said…the human body is INCREDIBLE!

The best news is that Daniel is back to nursing full time.  (I never did like that little relationship I was having with the pump!)  He seems to be doing well, so we should see some weight gain tomorrow when we go for his check-up.

Now, if I could go back in time, I’d tell myself to not worry so much.  Haha!  That’s easy to say when I’m on this side of things.  I was told the waiting and anticipation really are the worst parts, and how true that is!  An incredible peace washed over me as we walked through the doors of the hospital.  Handing him over was the hardest thing I’ve done, and I don’t think I could have done it without that peace.  I just knew he would be OK, and I knew he was being watched over.

Before and After

Seeing Daniel lying in his hospital bed, I realized that he really is so much more pink and healthy looking than ever before.  It is an amazing change!

The lighting is different (outside versus inside), and maybe the blue shirt adds to the effect, but there is a noticeable difference nonetheless.  We are sure enjoying Daniel’s more colorful side!

We Are Home!

We made it out of the hospital today and arrived home a little while ago.  Home never looked so good!  I calculated that Daniel spent 147 hours in the hospital!  He has a few new scars and a tank of oxygen to lug around.  But I’d say those are a fair trade-off for a heart that works the way it should!

We express our love and appreciation to the doctors, surgeons and nurses who watched over Daniel for the past week.  They are amazing people and we are so thankful for the work they do.

We also express our love and appreciation to those who were thinking, praying, and fasting for Daniel and our little family.  We thank you for sharing your faith with us.  We thank you for the time you have given in service to our family.  Words fall short, but know how very much we love you and how thankful we are for you.

Words will never adequately express the rollercoaster of emotions we have been through and what it’s like to go through such a journey.  I am so thankful for the guidance and comfort of the Holy Ghost.  While completely giving over my son to the care of someone else was the most difficult thing I think I have ever done, I was immediately given a sense of peace and calm, knowing that he was in the hands and care of the Savior.  That sense of peace never left for a moment and was indeed a wonderful gift.

We love our Daniel so very much!  He has proven to have incredible strength and fortitude.  In the words of a friend, he’s our “SuperDan.” We are so blessed to have him in our family and back home where we can all enjoy him together!

Bummer!

Things were looking good for Daniel to be released today.  He was supposed to have a sedated echo this morning, and that’s when our “plans” started unraveling!  The team of doctors came in to talk before the echo.  His chloride level is low (one of the electrolytes), most likely from the Lasix (a diuretic to help keep fluid out of the lungs).  Normally Lasix causes low levels of Sodium, then low levels of Potassium, and THEN low chloride levels.  Daniel’s sodium and potassium are fine.  So the nurse practitioner wanted to keep him overnight so they could check electrolyte levels in the morning, but the cardiologist and surgeon both felt that was unnecessary…assuming that his echo looked good.  They said Daniel could have some specific medicine that would take care of it, and they felt fine about sending him home today.

The echo was supposed to be at 9 a.m., so Daniel hadn’t been allowed to eat since just before 6 a.m. (because of the sedation).  There was some sort of scheduling mix-up, so they were hoping to get it done by noon.  And in the meantime, Daniel was a cranky, very hungry boy!  Around 11:30 the nurse said it was time to go, and they decided not to do sedation.  WHAT?!?!  Poor Daniel has been STARVING all morning while waiting for this procedure, and they decide to not do the sedation?!?!  I wasn’t very happy and expressed that I was a little upset that he was forced to starve all morning…for nothing!  Thankfully I was able to feed him a bottle – which he devoured – while the echo was completed. The echo tech got my hopes up as she said, more than once, “Oh, this looks great.  You guys are SO going home today!”  Yippee!!

I got back to the room and started organizing our things so we’d be ready the minute we were given the green light.  I should have known.  For some reason, the cardiologist changed his mind after looking over the echo.  The repair still looks good and there is minimal valve leakage.  The pressure in the right side is a little high..which means Daniel will be on oxygen for a little while.  But he felt we need to recheck the electrolytes again tomorrow morning.

Hangin’ out  with the leggings on!

We were sad we missed the Buddy Walk yesterday.  We went on a wagon ride through the halls instead.  Our own little Buddy Walk!

So here we are, hospital hostages for one more day.  Today would have been so much easier to coordinate going home (especially for Jared).  But I guess that’s the way life goes!  At least I can enjoy my boy for that much longer, all to myself (and the nurses and the doctors)!

So Long ICU!

Daniel got moved out of ICU and onto the surgical floor last night!  He had a really great day yesterday.  He started talking again, he was pulling at his nasal canula, and I even coaxed a smile or two out of him!  He is taking his feeds orally, so the N-G tube has become little more than a decoration at this point.  I think it has to stay in until we’re ready to leave…just in case. 

I stand in awe of the nurses whose days and nights are filled with caring for the kids who spend time in the ICU.  It is definitely NOT the happiest place on earth.  The stress level is almost tangible, and I saw many a worried parent while we were there.  Those nurses have a hard job, and somehow they manage to do it beautifully, and with a smile and many kind words for those of us living through the difficulty.

This morning Daniel got the last two chest tubes and pacer wires removed, and they also pulled one of the last two IVs (the one in his foot).  They gave him some morphine (having chest tubes removed is a painful thing), so he’s super restless and very sleepy right now.  They’re hoping to get a sedated echo tomorrow morning to make sure everything still looks good.

Which means…we may be able to leave tomorrow or Monday morning!  I don’t think I have ever looked forward to either of those days as much as I am right now!

I took pictures this morning, while he was awake and before he got mad about chest tubes coming out.  So these pictures show him more wired than he really is.

Yum…oxygen in the mouth!  I think I’d have the same look on my face too!

Still pretty wired up.  (See the blue wire?  That is part of the pacer wires that they installed in case he needed a pacemaker.  The ends are stored in the tubes with the green lids. [There’s one right by his right hand.]  Almost where the blue wire goes into his chest, there is a suture…that’s from the chest tube they pulled out a couple of days ago.  The two white bandages [one sort of underneath his right hand] are where the other two chest tubes are.  Those tubes and pacer wires have all been removed now.  Those two white circles on his upper chest are just keeping track of his pulse.)

 

We’re keeping our fingers crossed that we can get out of here sooner than later!

Going With the {high} Flow

Daniel is probably the easiest patient these nurses have ever had.  Honestly.  I think the only time he’s ever cried was when they’ve pulled out tubes or put in the N-G tube.  He just goes with the flow and watches every movement anyone makes while they’re caring for him.  I wish everyone could see him while his eyes are completely fixed on whoever is caring for him.  It’s just a precious sight.  And then, when they’re done disturbing him, he sleeps and sleeps and sleeps.

Progress-wise, things are looking GOOD!  Really good!  Daniel has been weaned down to 2 liters of high flow oxygen this morning.  His arterial line is out, and his chest tubes will be removed tomorrow! 

Remember that picture of all the medicine machines yesterday?  Well this is what it looks like today…

That top one is just for milk.  They put it in a huge syringe and set it to feed over a certain amount of time.  The bottom one is for medicines.  He’s down to two heart-related medicines and a pain killer.  A-mazing!

The best news, however, is that they’re planning to move him out of ICU and up to the regular floor tonight!  He just has to get down to 1 liter of oxygen, which is regular flow.  I’m doing the happy dance as we speak!  (And Daniel’s doing the happy sleep.)

How can you resist these cute little glowing toes?

I am just so happy to feel like we’ve turned the corner and Daniel is well on his way to a full recovery.  It is so incredible to see how quickly he is recovering from all the trauma that has been intentionally inflicted on him.

Oh, and I got to hold him today!  (This post is now 3 hours in the making, so we’re covering a lot of ground.  C’mon…keep up!)  Almost exactly 72 hours after handing him over to the anesthesiologist.  That was a long three days!  But every second of the wait was worth it.  He snuggled right in and fell to sleep while I rocked him.  Oh it was hard to give him back!

I think there are a few nurses who are going to have a hard time giving him up!

No Bugs!

The virus testing all came back negative.  No RSV, no cold, no flu!!  (I knew it all along, but I’m glad they covered their bases.)  So we’re out of isolation mode and the nurses don’t have to use gowns and masks around Daniel anymore.

We moved rooms today, but we’re still in ICU.

And we’re winning the tube war in a major way.  One chest tube (I think I mentioned that in the last post) and his central line (basically a great big IV in the side of his neck) were both removed earlier.  His arterial line (in his hand) will be removed shortly after midnight.

Daniel is sounding a lot better – not nearly as squeaky and congested– but he still needs suction to help clear things out and he’s still working harder than normal to breathe.  We’re trying to wean him off of high flow oxygen, but it’s going slow.  Until he is off high flow – which keeps him from taking anything orally – we will be hanging out in the ICU.  (But I really don’t mind, because the nurses are a lot better.  Shhh….don’t tell the floor nurses!)  His nurse and respiratory therapist have been working really hard to get him to cough more often, so he got to sit up for a little bit while the nurse patted his back and the RT put a little vibrator-thingy on his chest.  He is just too darn cute!

 

(I wish I didn’t have to use a flash {picture on the right} but the lighting in here is not great and he’d be a cute little blur if I didn’t)

Two Steps Forward, One Step Back

The progress department delivered us a bit of a set-back yesterday afternoon.  Daniel developed some respiratory distress out of nowhere…difficulty breathing, turning blue, and needing to be bagged to get his oxygen sats back where they should be.  The first episode happened while I was pumping, so I didn’t have the chance to freak out (which is a good thing).  He sounded really icky (for lack of a better word) in the upper-respiratory department.  Trying to just get him to cough and clear things out became the major focus of the afternoon.

At one point, the nurse thought he may be aspirating (oral meds just disappeared when they went in his mouth, no swallowing action at all), so everyone felt like he should have an N-G tube just to make sure he wasn’t getting food or meds into his lungs.  I’m not really thrilled about it…but if it’s going to keep him safer, then so be it.  While the tube was being placed (and I stepped around the corner so I didn’t have to witness the struggle), Daniel repeated his pattern of difficulty with breathing, oxygen de-saturation, turning blue and needing to be bagged.  Ughgh!  I’m thankful I didn’t witness it (again), but gee whiz…I can’t step away for 2 minutes!

The tubes won this round, but we’re still a net of –1 in the tube department!

He was put on high flow oxygen and given some steroids and lots of suction.  Of course everyone starts talking RSV or some other virus, so he’s being tested for that.  Which means nurses have to wear gowns and masks to care for him, and it feels like we have the plague because we’re sort of in isolation.  Fun times in the ICU!!

I arrived this morning relieved to find Daniel doing well and looking pretty good.  Since he is on high-flow oxygen he can’t have anything by mouth, so that means the wicked N-G tube is scoring the points right now.  (Ha ha ha…we shall triumph, I promise!)  He has been maintaining his oxygen sats, his blood pressure is doing well (though he’s on oral meds for that – through the N-G tube of course) and he sounds a TON better.  We’re still waiting for the RSV testing to come back, but the first part of it is negative.  He’s also being weaned off the high-flow oxygen, so hopefully we’ll get back to where we were by the end of the day.  Fingers crossed!

Here are a couple pictures from this morning.  He was really alert with eyes wide open when I got here.

Look at all the medicine machines!  (There are a couple in the background that you can’t really see.)

Chest tube drains (they’re removing one as we speak, and he’s not very happy about it)

Still sleepy most of the time.

Thanks for all the prayers, thoughts and love.  We are feeling and appreciating all of it.

Post-op Day 1

Wow!  What a great sight we had when we walked into the ICU this morning.  Daniel’s vent tube had been removed, his catheter had been removed, and he was chugging a bottle of Pedialyte!  This kid is a super star!  He is doing really well and getting back to his super squirmy self.  We’re still working on controlling his blood pressure.  He is responding to the meds for it – thankfully – but it just keeps creeping back up when the meds run out.  We’ll get there.

Here are some pictures of the handsome little guy.

Dad got the honors of the first bottle today.

Happy (and very relieved) mamma enjoying his attempts at opening his eyes.

The eyes opened for a minute or two.  He really wants to see us and loves to be touched and “held” while he squirms.

He’s just doing really well and keeps progressing.  Our nurse last night said she thought he would be out of the hospital by Sunday (but don’t quote her on that)!  That would be the best thing ever!

Look at our boy! (post-op pictures)

We’re here in the Cardiac ICU with Daniel now.  He’s doing really great.  He has a ton of tubes and wires attached, he’s on a ventilator, and he’s more still than I’ve ever seen him.  But he looks GOOD!

Right now they’re trying to get his blood pressure down.  It needs to stay on the low side so the repairs can “cure” and not be too stressed.

Here are a few pictures (warning for those who may be a little squeamish):

He’s kinda hard to find under all those wires, but he’s there!  Contrast that with this one from this morning:

Maybe it’s just the placebo effect, by I can see a real difference in his color already.  He looks more pink to me.

He’s a little cold, so they keep putting heat packs and warm blankets on him.

Check out the pilgrim look!

We are so relieved to see him again and know that he’s being a little rock star!  We haven’t touched him yet because it causes his blood pressure to raise.  So for now we’ll just enjoy watching him and be thankful for all the progress.

Surgery Update #5

Wahoo!!  Surgery is done and everything looks good!  We’ve spoken with the surgeon and he was pleased with the way the repair went and with the current function of Daniel’s newly-repaired heart.  He even gave us rest of the square of Dacron they used to patch the VSD with.  What a fun “souvenir”!

We should get to see him within the hour.

Surgery Update #4

Doctor Mart (the assisting heart surgeon) just came and notified us that Daniel is off the bypass machine and his heart has been started back up. The echocardiogram indicates that there is very little leakage, so now they will work on controlling the bleeding, and will install some drainage tubes and get his chest closed up. They expect that Daniel will probably be in surgery for about another hour or so before being moved to recovery.

Yay for more good news!

Surgery Update #3

Daniel is off bypass!!  That means the repairs have been made, and now they do another transesophageal echocardiogram (the probe is down his throat and resting right behind his heart) to check his heart’s function and make sure the repairs are sufficient.

We are relieved to hear each set of updates!  The next one should be within the hour.

Surgery Update #2

Just talked to the nurse…Daniel has been on bypass for about 20 minutes, and the surgeon is currently working on patching the VSD (hole between the lower chambers).  Everything is going well.  FYI – for this hole they’re using a synthetic material, called Dacron.  It is stronger and more resilient than the pericardium (sac around the heart) that they’ll use for patching the ASD (hole between the upper chambers).

We are sitting in the waiting area with a lot of other parents.  We’ve had lunch and are snacking to our hearts’ content on the cookies, crackers, and juices they have for us.  Trying to pass the time with emails, blogs, books, etc.

We should have another update in about an hour (the magic time frame).

Surgery Update #1

We arrived at 9:30 a.m. and went through all the preliminary stuff…vitals, history, consults with the anesthesiologist, cardiologist and surgeon.

We just received word that the surgery has started.  So far, so good.

After placing all the lines and putting him on bypass, they will close the hole between the lower chambers, then separate the valves, and finally close the hole between the upper chambers.

We will get another update in a little more than an hour.

Confidence becomes her

Miss Rachel waltzed into her first day of preschool today with her curls bouncing and a huge smile on her face.  No tears.  Not even a hint of worry or sadness.  We’re in for some fun with this girl!  Her personality is just dazzling and silly and confident.  It’s hard to believe she was our little NICU baby just four years ago!  Look how far she’s come!

These two have been almost inseparable for the last three years.  What will he do without her?

(Caleb seemed just as excited for preschool as she was.  I don’t think he quite understood that she was going and he was not.)

I was so delighted to see her playing happily with the other kids when I picked her up.  She buzzed from here to there just like a busy little bumblebee, with barely a glance in my direction.  I beamed with pride to hear her teachers say how delightful she is, and how much they love her cute laugh.  She ran to greet me when it was time to leave, and we walked hand-in-hand as she told me, “Well, we learned EVERYTHING!”

Where has my baby gone?

Making a List, Checking it Twice

I feel a little bit like Santa Claus this week.  Only I’m not wearing a red suit, it’s not freezing outside, I don’t own any reindeer, and I’m not bringing anyone gifts.  But I do have a list that seems to be a mile long, and I’ve been working ever-so-diligently to get all the items checked off.

First there’s canning the droves of tomatoes that are turning a beautiful shade of red as they bask in the sunlight on one of the 20+ plants we have in our garden.  20 plants???  Yes, you read that right.  I don’t know what we were thinking a few months ago when we loaded our cart at the garden store.  The plants were so tiny and cute, so harmless.  They just needed some love and attention.  The current state of their branches - sagging under the weight from the fruit they carry - is evidence enough of the love and attention they have received the past 4 months.  I have peeled, crushed, and processed 17 pints (from 2 pickings) so far.  And there are enough of the red beauties on my counter for at least 10 more pints, though I think we’ll make some fresh salsa with them.

I just couldn’t live with only 5 bags of corn (what is currently in my freezer), so I picked up 5 dozen ears of corn at a local produce stand yesterday.  I had forgotten how quick and easy it is to prepare corn for freezing.  I got all 60 ears done in less than two hours, and came away with 10 bags of delicious sweet corn to freeze.  I think I’ll get some more – partly because I’m a fool, partly because I’m not sure 15 bags will last us a year, and partly because I can’t pass up 15 cents an ear!!  (Wow!!  I haven’t seen prices like that in YEARS!)

I also cooked up a large batch (read 1.5 gallons) of chili yesterday.  I feel a wee bit guilty about the prospect of Jared and the kids eating out the entire time I’m at the hospital with Daniel.  Yes, Jared is completely capable of cooking, and he does a great job at it.  But I know how it is to get home at 5:00 and THINK you’re going to come up with something to eat and throw it all together – oh, and keep everyone happy until it’s cooked.  Yeah, it’s not gonna happen much, if at all.  That’s where the chili comes in.  They all love it, and if it’s already cooked, there’s no excuse.  I’m going to be spending a large chunk of time today and tomorrow grating cheese, cooking tortillas, cooking pinto beans, etc. for meals like quesadillas, tacos, french bread pizza.  Quick, easy meals to throw together, thus avoiding the fast-food trap.

Jared brought up a point I hadn’t considered previously.  What are we going to do about Emily’s (and Rachel’s) hair?  Oh my goodness!  I had not thought about that.  Jared does a lot of things.  But doing girls hair is not one of them!  He assured me that he could help Emily blow dry her hair.  Thank goodness she has the most beautiful, perfect hair, because that’s all she really needs.  I guess he’ll have to send Rachel to the babysitters with a few hair elastics and beg them to do something with her hair!

There is laundry to be done, stuff to pack, schedules to prepare.  I guess you can see where this is going.  My mile-long list is keeping me distracted, preventing me from thinking too much (and then crying) about what is ahead for us.  I have been especially emotional today and find the tears to be coming more often than I would like.  What a relief it will be when we are on the other side of surgery and can look back on it as just a distant memory!