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Where is the X Chromosome?

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I am surrounded by boys, boogers, bugs, bumps, and bruises, and lots and lots of testosterone. Sometimes it gets to be a bit much.  Like when my 2 year old, who is finally just learning to talk, chooses “fart” as one of his first words.  And of course everyone bursts into laughter which makes said 2 year old repeat the word over and over. (And who am I kidding?  I am a Mattson.  I was laughing, too. But that’s beside the point.)

Boys are loud.  They are gross.  They can be pretty smelly.  They have no clue how much they trash the house on a daily basis.  And words like “poo poo” and “booty” and “tee tee” are wonderful words that require their own songs.  Alex made up a very special song about booties.  “It’s booty today!  It’s booty today!  It’s booty booty booty booty booty!”  It’s a rather catchy little ditty that will, unfortunately, get stuck in my head every time I hear it. (And now I will be singing it the rest of the evening. Great.)

I need a little girl.  A sweet little girl who will help me keep things neat and clean, who will go shopping with me, who will play dress up with me.  A daughter.  But as I pray for that and wait for it hopefully, I am thankful for my smelly, loud, wild little boys.  Little boys who will spend most of their outdoor time before dinner picking flowers for me because “you married Daddy and you deserve flowers.”

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I am so blessed to have my wild hooligans.  They are precious to me and I thank God for them every day.

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Two and a half weeks post surgery

IMG_20140307_092609812And not only is Robert’s heart healthier than it has ever been, but it has even improved since his appointment on February 24th!  Dr. Aggarwal said Robert’s heart is returning to its normal size, there is still no leak, and there is a slight stenosis.  There was some concern with the lack of healing at the top of his incision so he asked someone from surgery to come take a look at Robert.  Dr. Salazar’s wonderful guy, James, came and decided there was a string sticking out! James cut the string off and said Robert’s incision should heal properly now but that we should keep an eye on it to make sure. I am not worried about it.

The thing I am worried about and am asking for prayers for now is Robert’s stomach.  He has been complaining of almost daily stomach pain since October.  Sometimes, he was obviously lying and sometimes he was obviously in pain so I don’t know whether to believe him or not when he complains.  He was completely fine last week (particularly when Christopher and I were out of town and he was being cared for by my wonderful in-laws) but these past three days he has been complaining again.  We have not yet taken him to his pediatrician for this because we felt confident that it was an issue related to his heart, but now that his heart is fixed and he is still having pains and I honestly cannot tell whether or not he is lying about it, I have decided it is time to really get him checked out.  The good news is that after his surgery and numerous subsequent (expensive) cardiologist visits, we are done paying for doctor visits for Robert for the year. Please pray there is nothing serious wrong with Robert and that we can get to the bottom of his issues, whether it is a real physical problem or just sin.

 

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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