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Monthly Archives: February 2014

One week!

IMG_20140225_183511475Here is our boy exactly one week after open heart surgery!  I cannot believe how far he has come.  We brought him home Saturday, attended church as a family Sunday, and Monday he had to go back to the hospital to get his staples (14!) and stitches taken out.  That was rough.  He was more afraid of pain than actually in pain and he became a little demon child.  I have never seen someone turn such a shade of red that he is glowing! When he started yelling out GET. YOUR. HANDS. OFF. OF. ME. RIGHT. NOW! I knew my Robert was gone and there was no getting through to him.  It was awful.  But it’s over now, his scar looks great, and he’s getting back his energy and appetite and his amicability. He will go back to school and Bible study next week and hopefully things will get back to normal at that time.

At the appointment Monday I asked Robert’s cardiologist if it is safe to say that Robert’s heart is, at this time, healthier than it has ever been.  He gave a surprised little chuckle and said “Yes!”  Dr. Aggarwal sounded amazed when he told me there is NO LEAK and Robert has only a slight stenosis.  And in the coming weeks, Dr. Aggarwal will begin to wean Robert off his medication so that he will have no daily meds at all!  I cannot believe it!  He’s been on medication since he was born with maybe a short break somewhere in there. This is a new life for Robert.  It’s amazing.  God’s amazing.  He just keeps going above and beyond what we ask.  We are so blessed.

Praise be to God

Our sweet brave boy is HOME! We are all relieved to be home and back together with the littler ones. Robert is still in some pain but he seems to be in better spirits. He just had a nice little nap in his own bed.

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I am absolutely amazed Dr. Salazar was once again able to repair Robert’s valve. And I am blown away by all the support, encouragement, and prayers we have received throughout this long, difficult week. Robert came home with 9 balloons and three bags of gifts. People have been providing food and gift cards so our bellies have been full. Our many visitors and vigil keepers on Tuesday have kept us sane. The prayers of everyone have kept us grounded. I just want to give a huge THANK YOU to you all. It’s wonderful to have such a close and loving family and friends who drop everything to help in our time of need.

While we are now home, Robert’s recovery is far from over. We have to limit his activity a bit for the next 6 weeks while his sternum heals. He has a broken bone so he’s in a lot of pain. He’s exhausted. And he’s embarrassed by his scars. So please continue praying for our son and for us as we try to help him and reestablish a routine with our other precious boys.

Friday Updates

I don’t really feel like typing, so we’ll let Robert provide some updates in his own words:

Thursday Afternoon

Robert is now in his own room on the fifth floor of Batson. It is astounding how quickly this improved his outlook and attitude. Just this morning Robert was thrashing in pain simply because I raised the head of his bed up slightly. A few hours later, after getting out of the PCICU, he was walking to the play room and playing with toys on the floor, and sitting in a chair coloring.

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The nurses are saying that the output of his chest tubes is very low, which is a good sign. In fact, they are saying he could go home as early as tomorrow, though we think he could use the extra day.

His bandage is now off and the incision looks like it is healing nicely. We were a bit surprised to see that they used staples this time rather than sutures, but I suppose it makes sense now that Robert is bigger.

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It is so wonderful to see him progressing so quickly and feeling better and better with each passing moment. We have been remembering that we saw a similar progression after his last surgery, and that memory has been so helpful to us during the times when we have been tempted–like Robert–to wonder if the pain will ever go away. It will and it is, right before our eyes.

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Thursday

Last night Robert asked, “What day is it tomorrow?” When I told him tomorrow is Thursday he said, “Then I have to go to Bible Study.” The poor guy is trying to think of every reason why he needs to leave the hospital now.

When Christopher and I arrived this morning Robert smiled at us. Then the next hour was filled with crying and screaming and defiance and demands. He refused to take his pain medicine and he thrashed around and fought the nurse so much that she now has to replace Robert’s iv line where she’s been injecting medication. We finally had to leave Robert so the nurses could do their thing. It was obvious that his dramatics were for our sake and our presence was not helping at all. I guess this is tough love.

Robert should have his own room this morning. We will send out an email when Robert is ready for visitors. He really needs more encouragement than we’ve been able to give him. In his 5 year old mind, his pain and hospital stay is going to last forever.

 

Second Wednesday Update

Christopher guest posting again . . .

As Rashell said, today has been a difficult day, in some ways, much more difficult than yesterday. Yesterday, the nervousness and apprehension was ours, but Robert was peacefully sedated most of the day. But today, Robert woke up to his first day of recovery, less than 24 hours removed from having his chest lacerated, having his ribcage separated and wired back shut, spending four hours on a heart-and-lung machine, and having been on a ventilator for most of yesterday. For a 5-year-old, that is–to quote Robert–”not fun at all.” It is also very difficult to make a 5-year-old understand that it is good for him that we make him do things he doesn’t want to do, which cause him incredible amounts of pain, for no apparent reason, just as he has finally gotten over the last wave of pain.
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However, as difficult as it has been for all of us, Robert has made incredible progress today, and we have seen a lot of travel along the continuum from morphine-induced-thousand-yard-stare to our happy, insightful, sweet, loving Robert boy. He received a plush helicopter toy and a Cars-themed mylar balloon from some dear friends from out of state, and they really brightened his countenance. He also got to “unplug” quite a bit: the nurses removed his forehead SpO2 sensor, foley catheter, central line, and a peripheral IV. He still has one IV line, a finger SpO2 sensor, a blood-pressure cuff, a couple of other contact sensors, and two chest tubes, but he does look much less “bionic” than even this morning.
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Robert has gotten a transfer order so he can leave the PCICU and go out onto the “floor,” so he will be getting his own room in the Batson tower just as soon as one becomes available. We are hoping that will be tomorrow (Thursday) morning or afternoon. When that happens, it should help us improve Robert’s experience quite a bit. We’ll be able to stay with him at all times and won’t have to leave the area to go to the bathroom, eat, or sleep. We’ll have more control over the TV and will be able to do more activities with him. And we’ll be able to entice him with the “Flintstone” cars on the sixth floor to get him to walk and move around.

If history (and today’s progress) is any indication, we are expecting tomorrow to be a much better day, and we look forward to seeing even more of Robert’s warm, cheerful disposition returning. Thank you all for your continued prayers and support.
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First day after surgery

Well today has been rough. When we arrived at the hospital Robert was literally screaming in pain. He constantly complains of tummy pain which the doctors feel confident is from Robert’s two chest tubes. Unfortunately those tubes have to remain his entire hospital stay. After a dose of morphine midmorning, he seems to be feeling better. He still hurts but he’s been more willing to eat and he’s not screaming any more. We even got him to sit in a chair and stand up this afternoon.

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We have been told that Robert has transfer orders and as soon as a room opens up for him he can move out of the PCICU. We are hoping this happens soon. I think Robert is wanting more privacy.

Thank you for your continued prayers. Our boy is sleeping now on his own- no morphine. Praising God for that.

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More

Since getting settled in the PCICU Robert has abruptly woken several times and tried to sit up. We left him at about 6 to be with the other boys for a bit. After getting them to bed I was able to sleep for about an hour before getting the call that Robert is truly waking and they’ll be taking his breathing tube out soon. Christopher and I are headed to the hospital now to be with Robert while he’s awake.

10:45pm Tube is out! It was rough and Robert was in a lot of pain but they gave him morphine to make him comfortable. He’s doing well.

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Wherein Robert’s Aortic Valve is Repaired . . . Again

Robert is out of surgery and he came through it extremely well. It was a bit of deja vu, as just like his last surgery, we got an unexpected call from the OR saying that the surgeon was finishing up much earlier than we had anticipated. And just like last time, the reason for this was that the surgeon was able to repair Robert’s native valve without having to replace it.

One significant difference from last time, though, is that Dr. Salazar was able to achieve a better, more effective repair resulting in no leakage. Robert has (and has had) a bicuspid aortic valve, meaning that his valve has two leaflets that control the flow of blood into the body, whereas a normal, healthy aortic valve has three leaflets. Now that Robert’s tissue is roughly twice as large as it was at the time of his last surgery, Dr. Salazar had larger, stronger tissue to work with, which enabled him to use materials and techniques that were unavailable last time, and so he was able to get Robert’s two good leaflets to make better contact and prevent leakage. The downside is that he does have a mild stenosis, but that is far preferable to even a mild regurgitation (leak).

To put this in perspective, Robert has had at least some regurgitation since the balloon valvuloplasty he had when he was five days old. So today is only the sixth leak-free day of Robert’s life.

God willing, the repair will hold and the leak will not reoccur. Dr. Salazar indicated that a reasonable expectation based on the outcome of the surgery is that Robert should be able to go 10 to 20 years before needing another surgery. Obviously, we could not be more pleased with this result, which is–yet again–far beyond what we dared hope for going in.

Robert still has 4-5 days of inpatient recovery at the hospital, and right now, he is still in the process of coming out of anesthesia. They are bringing him out of it gradually and using morphine and acetaminophen to manage pain. We got to go back and see him as they were pushing some morphine, and Robert, still considerably sedated, was trying to talk to us and open his eyes. It was hard to see him in obvious pain and trying to call out for us, but on the other hand, it was inspiring to see his strength and resolve resisting the anesthesia.

As for the next steps, we are expecting that as the sedation wears off, Robert will start becoming more conscious and aware, and will be able to have his breathing tube removed (ideally) within the next several hours. Though it’s possible we could get a 3 a.m. call like last time saying he’s ready to have his tube removed, we’re hoping to reach that point sooner this time. If so, and if he progresses as expected, the PCICU staff is saying that Robert should be moved out of the PCICU and into his own room some time tomorrow, late morning or mid-day. If his recovery takes a track similar to last time, we would be looking at discharge on Saturday or Sunday.

We are so proud of our big, strong heart patient, and we are so grateful for all the friends and family that have been surrounding and supporting us. Please keep praying for our sweet son.

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Updates

9:45 Anesthesia has been completed and Dr. Salazar is doing his thing. We have lots of wonderful visitors who came bearing gifts of food and water. Such a blessing.

10:45 No new news. Robert’s doing well.

11:45 See above. :-)

12:45 Still in surgery. Going well. We don’t have any specifics right now. And we don’t know how much longer Robert will be in surgery. But I will continue to update!

1:10 They are closing! I’m going to see my son!

1:42 I am overwhelmed with the goodness of our God. We just saw our son. Dr. Salazar repaired the valve. There is no leak and only a small stenosis. He’s doing well. The nurses are getting him settled in the picu now and we’ll get to visit with him then. Thank you for all the prayers. Please continue to pray for a wonderful easy recovery.