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Monthly Archives: January 2011

Family Fun at IHOP

A couple of Saturdays ago, Christopher and I planned to roll out of bed, get everyone dressed, and head on over to IHOP to take advantage of their all you can eat pancakes deal for $4.99.  Through a series of misunderstandings, this did not happen and we settled at the table around bowls of cereal.  But this morning, we revisited the plan, there were no misunderstandings, and we got everyone to IHOP at 9:00.  We enjoyed coffee, eggs, hash-browns, and as many pancakes as we could eat (which turned out to be less than four apiece).  Robert ate a bowl of oatmeal before we left the house so he had a few bites of my pancakes and then entertained himself with crayons and bouncing around on the bench before eventually slipping and hitting his head on the table.  After that, Robert put his finger down the straw hole of his apple juice lid and I had to yank it out for him.  Hopefully, the lesson is learned there, unless he is truly his mother’s child in which case he’ll have to stick his finger in several more straw holes before it finally sinks in.  Alex was his usual chunky cute self in a high chair.  We gave him some Cheerios and Goldfish to munch on, and half of them ended up on the floor.  And three times, Alex just decided to bang his head on the table, so he must be his mother’s child, too.  Right at 10:00 both boys started to fall apart so we high-tailed it out of there, but by then Christopher and I were both filled to bursting and happy to get away from the enticing pancakes still staring us in the faces.  Overall, it was a successful IHOP morning, and we all had a good time as a family.  Now Alex is settling down to a morning nap, Robert is enjoying “Woody” yet again, and Christopher and I are taking turns finally getting our showers.   It’s so nice to enjoy time with one another in our own home.  God is good.

Post op news

I cannot believe it has already been a week since Robert’s surgery.  I can’t believe that this precious boy on the couch eating his grilled cheese sandwich while watching “Woody” is the same boy who, just one week ago, was attached to all kinds of tubes and wires and could barely croak a single word with his dry throat and mouth.  Robert has done so well all week long.  He’s still catching up on a lot of sleep lost while in the hospital so I’m not noticing an improvement in his energy level but his appetite seems to have improved.  Any readers of my blog will know that this is a huge relief to me.

Robert’s post op appointment was at 9:00 this morning and we didn’t leave the hospital until noon.  It was a long and hard few hours with both boys feeling very sleepy and hungry but we made it through and the great news we received has made it all worth it.  God is still working His miracles in our boy.  Dr. Salazar says that Robert’s valve looks like it has improved in the past week, and in his words, “I just can’t figure this out!”  But we know that God is on our side and we know that we have had countless numbers of people praying for our son.  Isn’t it wonderful seeing how God hears and answers our prayers?  And even goes above and beyond what we ask.  I am amazed at His goodness.

There is a slight fluid buildup behind Robert’s heart, but Dr. Salazar is not worried about it.  However, just as a precaution (and I am perfectly fine with this), we will be going for another echo next Friday.  Please pray that the fluid will be cleared up and that his heart will continue to improve.

As I said above, I know we have had countless numbers of people praying for Robert and for us, his parents, and I can’t thank you all enough.  It has been a humbling experience seeing God’s people come together to bear this burden with us.  And this has been a huge burden for us, but God has heard all of our prayers.  Thank you, thank you, thank you for interceding on behalf of Robert.  You all have been a huge blessing to our family.

HOME!

Psalm 97

The Lord reigns, let the earth rejoice;
let the many coastlands be glad!
Clouds and thick darkness are all around him;
righteousness and justice are the foundation of his throne.
Fire goes before him
and burns up his adversaries all around.
His lightnings light up the world;
the earth sees and trembles.
The mountains melt like wax before the Lord,
before the Lord of all the earth.

The heavens proclaim his righteousness,
and all the peoples see his glory.
All worshipers of images are put to shame,
who make their boast in worthless idols;
worship him, all you gods!

Zion hears and is glad,
and the daughters of Judah rejoice,
because of your judgments, O Lord.
For you, O Lord, are most high over all the earth;
you are exalted far above all gods.

O you who love the Lord, hate evil!
He preserves the lives of his saints;
he delivers them from the hand of the wicked.
Light is sown for the righteous,
and joy for the upright in heart.
Rejoice in the Lord, O you righteous,
and give thanks to his holy name!

Day Four: Making Progress

Today’s post is very late because it’s been a busy day. Since he’s in his own room, we can stay with him overnight. So Rashell camped out at the hospital last night. Robert slept off and on, and I relieved Rashell around 7:30 this morning. Robert had a newfound energy and we played catch with a wadded-up paper towel.

After a while, I decided to see if Robert wanted to get out and about, so I got him hooked up to some wireless monitors and we ventured out into the hallway. They have several toy vehicles that the children can ride around the hallways. Three of them are Flintstones-style cars, one is a smaller pink car with a handle for parents to push, and the fifth is a plastic Radio Flyer wagon. Robert went straight for one of the Flintstone cars and climbed right in. He pedaled his little feet as I guided the car around the floor, making a large circle. After we got back to the beginning, he hopped out of the car and made a bee line for another one. This process repeated until we had made five laps around the hospital, each in a different vehicle. Once we had been through all the cars, we went through them again, Robert choosing each in the exact same order as the first time.

After the tenth circuit, Robert decided he wanted to push. So he went to the pink car, grabbed the handle, and started pushing. I let him push the thing all the way around the circle. Once, we got back to the beginning, he wanted to try the same thing with the wagon. This turned out to be a bad idea, as he soon ran over his own foot and started crying.

Fortunately, Woody and Buzz Lightyear were close by to comfort him, which they did until Robert succumbed to the sleepies. He took a good three-hour nap, which afforded Rashell and me the opportunity to get lunch and wander about the hospital. Overall, Robert is feeling much, much better. We’ve switch to oxycodone on demand (rather than on a schedule) and so far, he hasn’t had any since early this morning. This is important because they can’t send him home until he’s off the good stuff. Provided he’s off the oxy, the only other thing keeping him in the hospital is the chest tube. It is starting to drain more slowly, which is a good thing, and the cardiologist says that walking around will help it finish draining faster. We’re optimistically hoping for a release tomorrow or Tuesday, but that’s really up to Robert. Right now, we continue to be encouraged. Robert is such a strong little kid and he’s in such good Hands.

Today I leave with you with a picture of Robert watching a movie and eating Doritos.

Day Three: On the Mend

Christopher posting again. Rashell and I got to sleep through the night last night. When we got up, Rashell called the hospital and they told her that Robert was up most of the night, but in a good mood. They said he watched all six Pixar movies we brought for him and that the nurses took turns rocking him on their laps. He’s still in the PICU but we’re hoping for a move to “the floor” some time today.

We got to the hospital a little after 8 this morning and Robert was writhing in pain. It was heartbreaking. Rashell held him and he just moaned and cried, reaching up and gingerly touching his chest. It was so difficult to watch, knowing there wasn’t anything we could do except comfort him. Eventually, the nurse gave him some morphine to help with the pain and it was like someone flipped a switch. He stopped crying and turned into our little Robert boy. He started smiling, talking, eating, and interacting with the movie (Toy Story). When I started filming him, he asked for the video camera, which I gave him.

He’s recovering very quickly and his doctor said he might be able to go home earlier than we expected. Of course, that all depends on how effective the pain management is and how quickly he can be weaned off the stronger main meds. The plan now is to stop using morphine and instead alternate ibuprofen and oxycodone every four hours. Once he’s down to only needing ibuprofen, Dr. Salazar said there would be no reason to keep him in the hospital.

He still has his chest tube in and it will probably stay there until Monday. Aside from that, all Robert has is a heart monitor, O2 sat monitor, and two peripheral IVs. Dr. Salazar said once he gets his own room, we can allow him to do anything he wants, including walking around and playing. We’re looking forward to that.

Thank you all for praying and please keep it coming. It’s obviously effective and we are so thankful for all of you. I’ll update this post when Robert gets a room and we have more information. Until then, here’s the video Robert shot of himself:

1:45 PM: Robert is now in his own room and he’s been doing really, really well. He’s been awake and pleasant since this morning, though he does look awfully sleepy. He’s been sitting on Rashell’s lap almost the whole time.

Since he has his own room, now he can receive visitors. If you’re in the area and want to drop by, get in touch with Rashell or me and we can give you the room number and info. Here’s another picture of our little patient:

Day Two: Recovery Begins

We’re back at the hospital, having arrived here shortly before 4 AM. Robert is now breathing on his own and dozing on and off. When he wakes up, he is very pitiful. He groans and grimaces and asks to be held in a croaking, gravelly whisper. And while it is heartbreaking to witness, we know it is a very good sign. He is progressing very well and we couldn’t be prouder of him.

He’s still feeling the lingering effects of the anesthesia, plus they’ve given him some medication to help him sleep. I’m not entirely sure what to expect from today, but I wouldn’t be surprised if we get to see some more of the Robert we’ve come to know and love.

I’ll try to update this thread throughout the day like we did yesterday. And please keep praying. Yesterday was difficult for us, but going forward will be difficult for Robert.

11:03 AM: Robert was getting some good sleep so Rashell and I went home around 6 to try to do the same. We’ve been back at the hospital for about an hour and since then, Robert has woken up and Rashell is currently holding him, giving him a cup of apple juice. He’s still a little disoriented and his eyes aren’t focusing, but that will go away soon. They’ve taken several monitors off him so right now, all he has is his chest tube, heart monitor, O2 sat, a central line, and a few peripheral IVs. He’s progressing very well and the doctors and nurses are pleased.

1:11 PM: Robert got some good snuggle time with his momma, eventually falling asleep in her arms. At about noon, they needed to do an echocardiogram so we took that opportunity to go get lunch. When we returned, he was sleeping peacefully again. He’s doing great and they told us that the only reason he’s still in the PICU is that they don’t have a bed open for him in the main hospital. Hopefully, one will free up son and we’ll be able to move there where the visitation rules aren’t as strict.

Since there isn’t much new news, I’ll just leave you with a new picture:

7:50 PM: The afternoon has been pretty uneventful. Mom and Dad squeezed in some short naps while Grandma stood guard by the bedside. She was able to comfort Robert a couple of times when he woke up in pain. He is progressing very well, but pain is a normal part of major surgery like this. Fortunately, they’re giving him the good stuff. After some morphine and oxy, he was soon resting comfortably in his mother’s arms.

We also had the opportunity to talk to the surgeon, Dr. Salazar, in more detail about the situation. He looked at the echo that was done earlier and said that the repair actually looks better than it did yesterday. He’s still very happy about the outcome and obviously, we are too.

Before we left the hospital to get some dinner, I got a chance to rock with Robert while we watched Toy Story 3. We had a nice conversation, provided I only asked yes-or-no questions. We confirmed that he does indeed love us and that he is feeling better and that he did not, in fact, poo poo. It’s too early to tell what tonight will bring, but we’re going to call the PICU momentarily to check on him. If he’s still doing all right, we’ll try to get some sleep at home.

9:18 PM: We’re still at home and Robert’s nurse said he’s doing great. We also learned that he’ll probably be moved out of the PICU some time tonight and we’re just waiting to hear when that will be. This is all very good news. Robert is recovering very well so far and we are really encouraged.

This is probably the last update for tonight since we’re about to try to get some sleep and wait for the hospital to call. For now, I’ll leave you with a video from this morning when Rashell got to hold Robert and feed him some juice. But be warned that this might be a little hard to watch. It was from earlier this morning when Robert was still a little delirious and wasn’t able to see very well. But it does show how strong he is being and how much he is loved.

Surgery Day

This is Christopher guest posting. Today Robert is having his surgery and we’ll be using this post to try to keep everyone updated. As we learn more, we’ll append updates here, so refresh every so often.

They took Robert back to anesthesia about 10 minutes ago, so he is now in the doctor’s hands. More importantly, he’s in God’s hands. So please keep praying for us and him.

More to come, news as it breaks…

10:04 AM: The nurse just came in to say that they are just now starting the surgery. Robert went to sleep without incident and everything is going well so far.

11:01 AM: Robert is on bypass now. They’re using a heart & lung machine for this surgery. He’s still doing really well.

12:08 PM: Just got an update. Nothing new to report. They’re still working on him and he’s still doing great.

1:01 PM: Same as before. Still working, still doing great. For the record, I am expecting the next few updates to be along the same lines. This is a 7-10 hour surgery and the surgeon told us he won’t give us details until he’s finished.

1:40 PM: Well, I was wrong. This update is not going to be the same as the last one. The nurse just came in and told us that the surgeon got inside and found that the diseased aortic valve is actually in better shape than anyone thought. So he repaired it instead of replacing it. Going into the surgery, the only question really was which procedure would he use to replace the valve. As it turns out, he didn’t have to replace it at all. This was an outcome no one ever told us to expect so obviously we’re happy.

The nurse said that the surgeon is closing right now and that he should be in to talk to us in about 45 minutes. I’m not sure now long after that it will be before we can see Robert, but I don’t think it will be long. Thank you all for your prayers. There’s no question that God has been gracious to His little one.

2:50 PM: We just got finished speaking with Robert’s surgeon, Dr. Salazar. He told us about Robert’s bicuspid valve and the repair that he did. He also said that he discovered an aneurysm forming in the aorta above the valve, so he removed it and it is no longer a threat. Robert’s prognosis is very good. He now has a trivial leak, though the tradeoff was slightly more stenosis. But this is in an acceptable range and, in Dr. Salazar’s words, “I think you’re going to be very happy with this valve.”

As far as long-term outlook, Dr. Salazar literally guaranteed us that we will be here again, needing another surgery. He told us that Robert’s valve will last him at least until is is five, which is good because older children have a lot more options when it comes to valve-replacement surgery. To put this in context, we were already expecting another surgery again in the future, and this way, there are fewer possible short-term complications, plus the pulmonary valve was left alone.

Robert has been transferred to the PICU and we’ll get to go back and see him in about 20 minutes. More updates later.

5:40 PM: Robert is now resting comfortably in the PICU. He’s under sedation so he’s still asleep, but they’ve taken him off the paralytic so he is moving a bit. We’ve gotten to hold his hand and talk to him. He’s doing great. We expect that they’ll wean him off the sedative some time tomorrow. For tonight, the plan is for everyone to get a good night’s sleep, so this is probably the last update for this post.

Thank you, everyone, for praying. There’s no question that it works. God hears His people and He has been kind to our little boy.

Here’s a picture of our sweet child.
image

8:03 PM: Well, I was wrong again. Shortly after my 5:40 update, Robert started to fight against the sedative. And since he was off the paralytic, he started to roll around and reach for things. So they called us back in to help calm him down and decided to go ahead and let him wake up and take out his breathing tube. But that has to happen on Robert’s time, and by 7 PM (when visitors are no longer allowed in the PICU), he still had not woken all the way up. So Rashell and I went home to get some dinner and try to sleep. They will call us once Robert wakes up and has the breathing tube out. He’s doing so well. It’s borderline corny to say “he’s a fighter,” but he really is. I put his stuffed owl (which he can’t sleep without) in his hand and told him he was holding his owl. Robert started to lift up and tried to throw it, his typical “I’m-not-going-to-bed!” reaction. So Robert is really doing great and we’re confident he’ll be up stressing the nurses out very soon.

We survived the pre-op! (And Alex survived a fall)

Well, it was bound to happen one day.  Alex fell off the couch head first and got quite the bang up.  As far as I can tell, he landed on his forehead and slid a bit.  He has a very red nose from rug burn.  Poor thing.  Good thing he is a tough little guy.  He bounced back pretty quickly, but it looks like we have a little Rudolf in our home.

We had Robert’s pre-op appointment today.  Robert did so well and it was not as bad and Christopher and I dreaded it would be.  Robert played most of the time with his cars and had a grand time bouncing around and acting like a frog on the exam table.  He got an x-ray, a short physical, and some blood drawn.  The blood was definitely the worst part.  Four people had to hold him down and Robert kept turning his eyes up at me (I was holding his head) and begging me to hold him.  I admit it- I cried.  But then I realized that I needed to be strong for my little guy so I started trying to encourage him.  It didn’t really help him calm down any but it was definitely the better attitude for me to have in the situation.

We spoke with several different doctors about Robert’s surgery and were told what to expect on Wednesday, the day of the surgery.  We have to be at the hospital at 6:30 in the morning.  Ugh.  It’s going to be a really rough day and then a difficult week after that, but once it is all over, God willing we will have an active, happy, healthy boy.  I’m really looking forward to that.

Thank you everyone for your prayers and support.  People say all the time that they “feel” the prayers of others and I get to experience that once again during this week.  I truly do feel everyone’s prayers.  God is keeping me calm and somewhat peaceful about all of this.  I still have my fears but they currently are not ruling my emotions as they were a week ago.

Christopher and I will try to keep everyone posted on this blog throughout the surgery so be sure to check it often this Wednesday.  And keep praying.  :)