Tuesday, October 28, 2008
Robert is getting an echo at this very moment. The doctors are of course talking to themselves and not translating most of it for me, but what I gather is that there is not much residual obstruction of the valve (which is good), but there is still some concern over the level of aortic insufficiency (leaking of the valve). I’m pretty sure Dr. Gillespie will need to look at the images and compare them with yesterday’s, so we don’t really have any news on Robert’s valve leakage one way or the other.
The other issue is that his hemoglobin count is pretty low and a blood transfusion was mentioned, but they’ve decided to let him try to rebound on his own. He was put on Heparin yesterday to aid blood flow to his leg below the catheter entry point in his groin. They’re finding only a weak pulse in his foot, but they’re not concerned because his leg is warm and his color and oxygen saturation are good.
So for now, we finish the echo and get some opinions, we wait and see how Robert’s hemoglobin levels do, and we try to get a stronger pulse in his foot. We had thought his lines might come out today, but it looks like they want to keep his peripheral IV in at least for tonight.
More news as it breaks…
The point of entry in Robert’s groin has healed, the pressure dressing has been removed, and we have been able to hold Robert for a little while. We’re trying to get him to wake up so we can feed him before we completely run out of energy and have to go back to our room to sleep.
As I mentioned earlier, Dr. Gillespie said, almost as an afterthought, that the amount of leaking of Robert’s repaired valve that he was seeing in the images was significantly higher than he would have liked, but that it doesn’t sound like there is that much leaking when listening to his heart. A third indicator of aortic valve leakage is the blood pressure readings. According to his nurse and the attending CICU physician, patients with significant valve leakage generally have a larger “gap” between the upper and lower numbers when reading blood pressure. All of Robert’s hourly readings have been encouragingly close together. In fact, Robert’s nurse said that his blood pressure readings look like that of a normal healthy heart.
So out of the three indicators of aortic valve leakage, two of the three indicate less leakage than originally thought, and the third has been acknowledged to be inaccurate in many instances. This is very encouraging to us and we are fervently praying that when his cardiologist does another echo in the morning, it will reveal that Robert in fact has much less leakage than originally thought.
We are trying not to get our hopes up too much, but we can’t help but be excited for the possibility. Our hope is in the Lord who made heaven and earth. And our Lord can stop the excess leaking of a mere aortic valve. Please ask Him to do so, and to give strength to Robert and his parents.
On behalf of the latter, goodnight and we’ll see how the little man is doing in the morning.
Robert’s doctor, Dr. Gillespie came and talked to us about 45 minutes ago. He said that he was able to open the valve to a degree that takes Robert from a “severe” stenosis to a “mild” obstruction, which is what we were hoping for. The downside is that it looks like the valve is leaking more than we had hoped. Dr. Gillespie said that he didn’t hear as much leaking as he saw in the pictures and that the pictures can be inaccurate, but if his initial assessment is correct, Robert is in a much better situation than he was, but he still has a problematic heart that will need the oversight of a cardiologist for his whole life.
In the long term, Dr. Gillespie said that Robert will probably need further intervention for his heart, whether it’s a repeat of the same procedure he had today, or a more extensive surgery. Regardless of the case, he said there is no “cure” for his situation, but that there are things that can be done to minimize the impact on Robert’s life and activity. In the more immediate future, we’ll be taking Robert to a cardiologist on a monthly basis for the first few months, then every 6-12 months after that. Robert is now a very low risk for a “sudden event” and any problems that could develop would be gradual and would be evident in a cardiac exam.
In the short term, Dr. Gillespie said that they want to remove all his lines today and observe him with a doppler and ultrasound, neither of which require the IV or contact monitors he has now. In other words, we can probably take him out of the hospital for the first time as early as tomorrow. Dr. Gillespie indicated that since we’re already up here, he would recommend staying here for the rest of the week so Robert can be checked out and we can make sure he’s stable and nothing unforeseen occurs.
All in all, Robert is in much, much better shape than he was before, and God willing, we can bring him home soon. Please continue to pray for Robert and for his parents as we learn to care for him and raise him up as a God-fearing man. He has brought us so much joy already and we’re looking forward to sharing that joy with everyone soon.
They just took Robert down for his procedure. The doctor said it usually takes 2-3 hours. I think we will get an update in an hour, then in 30-minute intervals after that. Please lift our little boy before his heavenly Father.
2:38 UPDATE: The nurse just came in to say that they have just begun inserting the catheter in his leg and Robert is doing great. He is anesthetized and intubated but everything is going great so far. We should hear more in about an hour.
3:34 UPDATE: The doctor has successfully navigated the balloon to the valve and is in the process of inflating it as we speak. Robert has been doing great and there have been no clinical changes in his status. The doctor thinks he will be finished in 30 minutes so we should be getting another update at four. Please keep praying. This is the most dangerous part of the procedure.
4:02 UPDATE: The doctor has completed the valvuloplasty procedure and is happy with the results. He has done some imaging of the repaired valve and it looks very good. He is going to take one more picture then remove the catheter and sheath and dress the incision in Robert’s leg. The nurse is expecting him to be brought back up top his room in the next 20-30 minutes and there he will be awakened and extubated. They’ll want to monitor him for a little while and it’s looking like we’ll get to go see him in 45 minutes to an hour.
Please pray that the repair will be effective for the long term, that the repaired valve won’t leak too much, that Robert will recover quickly, and that no complications arise. Thank you all for your continued prayer labor.
We met with some more doctors this morning. Robert is the next case to go down to the catheter lab and they are expecting that to be between 12:30 and 1 (11:30 and 12 Central time). That’s about 30 minutes or so from now. It’s not a firm time but it does mean Robert will be going in soon.
We are, of course, quite nervous about the entire situation. But we know that God is in control and that is a huge comfort. The doctor who is performing the procedure is evidently very good and his specialty is pediatric cardiac intervention via catheter, so if there’s anyone qualified to do this, it’s him. Also, all the doctors have been remarking about how perfect Robert is otherwise. They expect him to tolerate the procedure very well and recover quickly.
Please pray for strength for Robert, skill for the doctors and nurses, and peace for Rashell and I. We have family here and are surrounded by your love. Thank you again for your concern and prayers. God willing, I’ll be able to post some very good news in a few hours.
For now, here’s a pciture of Robert with Mommy and Daddy, Grandma, and Uncle JJ:
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Well today was indeed uneventful for Robert. He was much calmer today than he was yesterday. He slept a lot but did spend significant parts of the day with his eyes open, looking around and at us. He got fussy a couple times when he lost his pacifier, but he didn’t throw any fits like yesterday.
Today was also a great family day. Robert’s Uncle JJ drove down and we had abig family meal at my Uncle Bill’s home. We got to see grandparents and cousins and had a great fellowship time. Afterwards, JJ got to meet and hold Robert who was perfectly happy, provided he had the specific pacifier that he wanted in any given moment. Mommy and daddy got to hold him too, as the on-call pediatrician made an exception and allowed us to hold him as long as we promised to be cautious of his umbilical catheter.
So tomorrow is the big day. The latest we have is still a general “Monday afternoon” for the balloon procedure. Everyone is expecting him to do just great. Hopefully, we’ll be allowed to feed him tomorrow night or Tuesday.
All in all, it was a wonderul day. Robert is changing a little every day and it’s amazing to watch him grow, even over a matter of mere days. We’re looking forward to getting him healthy tomorrow and bringing him home soon. Please pray for his procedure, and that our God would be pleased to heal him completely.
Robert did very well last night. We arrived at the hospital to find him snuggled up with a rolled-up blanket, sleeping peacefully. We should know this afternoon what time his procedure will be tomorrow. In the mean time, I believe the doctors will be doing some more imaging today to determine the effect (if any) of stopping the prostaglandin. He’s holding up really well and it seems that he gets cuter and cuter every day.
We’re still not able to hold him, but it was mentioned that we may get to hold and feed him after his procedure, provided things go smoothly.
Also today, we’re hoping to get to see some of my family that lives nearby. I mentioned that my uncle and his family live about 20 minutes from the hospital and my maternal grandparents live just over the bridge so we’d really like to spend some time with them.
I’ll try to provide more updates as the day goes on. Ideally, today will be boring and uneventful as far at little Robert is concerned. Please continue praying; we are daily seeing the effects of the prayers of the saints.
Saturday, October 25, 2008
Enjoy some pictures of our sweet boy from today:
Saturday, October 25, 2008
Rashell and I flew to Philadelphia this morning, arriving at about 3:30 in the afternoon. My uncle lives in nearby Drexel and he met us at the airport and took us over to the hospital. Robert had his own room and was doing really great. (Continued)
Saturday, October 25, 2008
Robert Joseph Meredith was born on Wednesday, October 22, 2008 at 2:26 PM. He weighed 7 pounds, 14 ounces and was 21.5 inches long. He’s a beautiful baby boy and we instantly fell in love.
The doctors quickly found an aortic stenosis, which is essentially a constricting of the valve that lets blood flow out of the heart. Robert is just fine now, but this is something that has to be corrected before it becomes a bigger problem. The procedure they need to do involves threading a tiny balloon into his heart and inflating it to try to open up the valve. If that doesn’t work, they might need to do a open cavity surgery to replace the valve.
The hospitals in Mississippi aren’t fully equipped to perform this more extensive surgery if necessary, so to be safe, Robert has been transferred to Children’s Hospital of Philadelphia (Pennsylvania, not Mississippi!) Rashell and I are getting ready to fly up there today to meet him. We expect his surgery to be Monday, but we’re not sure yet.
Since so many people want to know what’s going on and have been praying for us, we have decided to try to use this blog to provide regular updates. So please check back here often to see how he’s doing! We wil also try to post pictures regularly. Until I can get out pictures properly posted on this blog, you can see them on mine here.
Thank you al for your concern and mostly your prayers. We have been overwhelmed by the support and love we have received. It is so incredible to see the outpouring of love for Robert from his new covenant family and we look forward to bringing a beautiful, healthy baby back home soon.
