Update:
They did another Echo on Andy's heart this morning to see if there is any increased function from the medication, Flolan. At first glance the doctors said that the results show a small improvement. We were encouraged and yet the doctors were quick to remind us that there are no guarantees. The next step for us is to get trained on the administration of Flolan. We will do part of the training today and part tomorrow. Basically they tell us as soon as we are comfortable administering the Flolan we can go home. We should know more on our departure time later tomorrow.
We talked to MaryBeth our PH nurse this morning about expectations. Basically we have no real definitive news on Andy's prognosis. We will wait to see how the Flolan works in his system. The doctors say they typically don't see improvement for 3-6 months. So we are far from out of the woods. I have detailed a couple questions I have been asked by friends and family.
Q: So are they now saying that Pulmonary hypertension is NOT terminal in Andy's case?
A: PH has no cure at this point. In some cases it can be treated and pressures have been reduced. There is not much medical info on PH in adults much less infants to draw from. So they will send us home with the hopes that the Flolan works. We will see our cardiologist in Knoxville and plan to visit Vandy in 3-6 months for another Heart Cath.
Q: Once you get home how long will Andy be "The Boy with the Backpack?"
A: Andy is on a medicine called Flolan that is pumped into his heart every 3 mins, 24 hrs a day. In theory this administration of medicine does not stop as long as Andy lives. However, doctors tell us that in infants, because of their growth rate, can grow new tissue in their pulmonary beds. This means the lungs can make new tissue that may reverse the PH effect on the lungs. If this happens they would begin another medicine that would promote growth in the pulmonary beds. There are so few cases of PH in infants thus they can not give us much solid info other than the best and worst case scenarios they've seen in other children. Unfortunately, because of the small information they have on PH Andy is a bit of a case study. This is primarily due to his age. Most PH patients are adults or older children that have had heart surgery. Andy is an infant, two months old tomorrow so he is a pioneer.
Q: What is his life expectancy now?
A: At this point we just don't know. Until we see if the Flolan works to reduce his pressures there is no way to judge what his length of life will be.
Q: What can we pray for?
A: Primarily you can pray that the Flolan will Work! Also, pray that he thrives in his eating and does not get infections. Because he has a Broviac IV so close to his heart he could be subject to a staph infection. After his heart surgery he was suspect for infection but this is a much more serious. An upper resp infection or infection that effects the heart/lungs could threaten his life. So we will model Andy's time in Knoxville after our close friends the Ruth's & the Schollaert's. Our baby in the bubble will not be visiting Children's ministry for a while. :-) This also means that we will need to limit our interaction with sick friends, kids etc.
As you pray please remember Krista and I. We are growing tired and need to be refreshed. We also realize that this could be a very long road that we walk. We don't just want to make it through this trial.We want to have faith and joy in the midst of our trial. Our desire is to Trust the Lord in both Good and Bad. This is much easier to type on my computer than it is to live out. So you could pray for strength, endurance and wisdom for us.
The Sagraves
3 comments:
Your kid is so dang cute! We're lovin the updates and pictures you guys! Can't wait to have you guys back home.....
Dave - thanks for the frequent updates. We think and pray for you often.
What spectacular pictures of Andy - he is a cute little guy!
It is so good to see Andy with his eyes open looking alert. Will continue to keep you guys in our prayers.
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