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Second Wednesday Update

Wednesday, February 19, 2014

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

Wednesday, February 19, 2014

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

Tuesday, February 18, 2014

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

Tuesday, February 18, 2014

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

Tuesday, February 18, 2014

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.

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Game Time

Tuesday, February 18, 2014

The surgery prep went as expected this morning, and Robert did really well. Of course, he was tired and apprehensive, so he was reticent every step of the way, but once he got familiar with the nurses and his surroundings, he really warmed up and won everyone over with his funny observations and sweet personality.

At about 7:40 a.m., they wheeled him back to the no-parents-allowed area to start anesthesia, and we expect that will take about an hour to an hour and a half. Then they will give us a call just to let us know that they are getting started. From that point, we expect the surgery to last at least 4 hours, possibly up to 7. We’ll get updates roughly ever hour in between. Of course, we’ll be posting updates here as we get them. In the meantime, we’re camping out in the basement waiting area of the Batson Children’s Hospital.

Until the next post, here’s a picture of our sweet Robert moments before they wheeled him back.

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The big day

Tuesday, February 18, 2014

Thank you to all who have been and are praying. Thank you for the meals, gift cards, and emails. Today is going to be a long day. I will do my best to keep you all posted on Robert’s updates here.

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Alex

Sunday, February 16, 2014

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This little cutie pie will be 4 tomorrow! On the one hand, I cannot believe he’s 4!  He’s growing up so fast.  On the other hand, thank God year 3 is behind us!  This little guy has been the most challenging of our three boys.  But you know what?  He’s also the most loving and generous of the three.  Tonight after Bible time, Alex told his daddy that tomorrow is his birthday and he will have presents. Then he looked at Robert and said, “Robert, I have decided that I want you to help me open my presents.  You can open one and I can open one!”  This melted my heart and brought tears to my eyes.  One night, after eating all of his dinner, Alex asked for 3 Twizzlers for dessert.  Normally, I only give him 2 but he had been so good that day and he had eaten his dinner so well that I gave him 3.  He immediately gave one to Ben and sat down and ate his other 2.  He asked for 3 Twizzlers just so he could have an extra one to give to Ben!

Alex loves people.  He loves being loved.  He loves hugs and kisses and cuddles, but only on his terms. He makes friends everywhere he goes because he’s just so darn fun!  Ben follows Alex around everywhere and copies everything Alex does because Ben knows that Alex is fun and Ben wants to have fun.

Alex loves school.  He is doing so well in his K3 class.  His teachers seem to enjoy him.  He is learning and growing so much.  He has become much more coordinated since starting school and can now cut paper properly, hold a pencil properly, and hold his spoon and fork properly.  He can spell his name and he loves practicing his letters.  He knows lots and lots of songs and Bible verses.  He loves art.  He can sit at the table for hours and finger paint or color or cut and paste or play with play dough.

Alex is a very head-strong little guy and can be difficult to deal with, but he knows what he wants and he goes for it.  He has made me want to scream and tear my hair out with his stubbornness and he has made me cry and smile and laugh with his sweetness and funny funny personality.  He is one of the most delightful children I have ever met, and I am so blessed he is mine.

Happy Birthday, my little middle.  My Alex.  Mommy loves you very much.

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First week of February

Sunday, February 9, 2014

Is over! And wonder of wonders, I had no reason to stress or worry. The Valentine party went really well, Robert was awesome at his pre-op appointment, and Alex’s party was perfect. I even got my drivers’ license debacle straightened out! Thank You God!

IMG_20140208_115742670Alex had a blast Saturday even without a bounce house. We had a very small group of children so my house didn’t get destroyed. It turned out to be a beautiful day and the kids played outside most of the time.  Can’t believe my little middle is almost 4.

IMG_20140207_114806477Friday we were at the hospital the entire morning. Robert was amazingly patient and well-behaved. Talking to the surgeon made everything so real. The big day will be here in just over a week. We are leaning towards letting the surgeon put a pig valve in Robert. There’s a specific valve, called freestyle, that he wants to use and he is the only surgeon in the world to use this valve in children. Robert may be in medical books one day! Anyway, we are so blessed to have such an amazing and cutting-edge surgeon. He is playing God every day but he knows he is not God. Dr. Salazar is humble and honest. We are comfortable putting Robert in Salazar’s hands.

I will be keeping my blog updated the day of Robert’s surgery so stay tuned!

 

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Feeling Overwhelmed

Friday, January 31, 2014

Here it is.  The month of February.  Can it be over already?  Pretty please?  I am up to my ears in planning and preparation for several different things, three of which are all next week!

Wednesday is Alex’s and Robert’s Valentines Day parties at school.  As the K3 homeroom mom, I am in charge of planning and organizing the party for the 3 year olds. This includes planning and providing materials for a craft and making sure there is enough food for everyone.

Friday morning is Robert’s pre-op appointment filled with blood draws and X-rays and talks with surgeons, nurses, and anesthesiologists. That will be stressful all by itself.

Then Saturday is Alex’s 4th birthday party.  We were supposed to have a bounce house outside but with a forecast of 90% chance of rain, I have to come up with some fun indoor activities!  And I am not in the least bit creative, so I am frantically browsing the internet trying to figure out realistic ideas that I can pull off with only a week left to go (and I have to figure out when I’m going to go shopping for this party).

The second week of February, we will hardly see my husband at all as he has several after work commitments to keep. We won’t see him at all the second weekend of the month.

The 17th is a school day and Alex’s actual birthday, and of course, the 18th is Robert’s surgery.  I guess it’s a good thing I don’t have any time to panic about the surgery.  I have to get through this next week first.

Oh, and to top everything off, I figured I’d be a good citizen and renew my drivers’ license a month and a half early and I would do it online because, you know, I have three young boys I have to take with me everywhere I go.  Turns out my new license will be mailed to my old address even though I was required to give my current information (including address) when I was signing up for a new license.  And no one will return my calls or even answer my emails so I can figure out what to do about this situation.  It would have been better for me to take my 3 boys to the DMV office, sit for 2 hours, and finally have a new license in hand rather than deal with this.

Long story short, I need prayers.  And I guess I need to do some praying of my own. 1Peter 5:7 is Alex’s latest memory verse, and I suppose it applies to all of this. “Cast your cares on Him, for He cares for you.” These things I’m stressing about don’t really matter in the long run.  But it sure is nice writing it out and getting it all off my chest.

 

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