Today was almost a shock. There was no doubt as we sat in that meeting that MANY people had been praying. The geniuses came together and started to talk things out before we were invited to join them. They began sharing about the issues we were facing and addressed them one at a time. Everything was organized and well thought out. It was so informative and we were blessed to have the opportunity to sit down with so many people involved in Hope's care at once.
The clot on the end of Hope's PICC line is a problem. We need to up her blood thinner in order to treat this. They don't feel comfortable upping the blood thinner until they know where the bleed came from. GI did not realize that Hope had had an MRV in Edmonton and had been diagnosed with portal vein hypertension. They knew she had a clot in the portal vein but did not know that hypertension was a for sure thing. After hearing this, they were very firm on the fact that she needed this scope. If she does have varices, they need to be treated or they will bleed again for sure.
Cardiology weighed in on the fact that they felt Hope's risk of needing ECMO (heart/lung machine or life support) was low. They were open to her having the surgery and felt confident that she could have it in Calgary. So....Anesthesia, after hearing these facts, felt more comfortable taking the risk and doing the procedure. It helps to hear all the different specialists discuss the importance of the procedure. They have asked that the ECMO machine be in the room during the procedure. This will make it possible to get Hope connected quickly if necessary. The surgeon is going to be on call if she needs him as well.
Hope is scheduled to enter the OR tomorrow morning at 10 am. In some ways, it's nice to have it happen quickly as it gives us less time to worry. Please pray for us tomorrow as we sit and endure that long wait once again. Hope is much stronger this week and will be in a more stable position going in. It's probably better that they didn't take her last week.
Hope's last blood cultures showed that the infection is isolated to the line. That means that the only way to get rid of it, is to pull the line. It also means that as long as she's on the antibiotics, it shouldn't spread. This is good news for us in a few ways. This will lower the time frame that she needs to be on the antibiotics. It may also mean that she can come off the antibiotics as soon as they pull the line. We're not ready to do that now, but we should be able to pull the line in the next few weeks if the clot dissolves.
We then discussed Hope's probability of having her 3rd surgery. I let them know that we were frustrated with the conflict of information. In Edmonton, we were told that Hope could have the surgery, but she wouldn't be able to have it until she was older. It would be difficult to get her to that point, but possible. Since returning, everything was being spoken of as though the Fontan were impossible. The cardiologist shared that Edmonton had not passed that information on. They are going to write a note in Hope's file to be sure she is no longer looked upon as purely palliative. The intensivist apologized for the negativity that had been surrounding Hope and promised to talk with the other ICU staff.
After a long discussion, the team agrees that there is some hope that Hope could survive. The odds are stacked against her, but it's not impossible. They are now saying that although Hope is not currently a candidate for the Fontan, it does not mean that she will never be a candidate. That is all we needed to hear to hold onto the hope that we may watch our little girl grow up.
Hope is now completely off sedatives and only on a low dose of narcotics. She will need to stay on those for a few days post operatively, but should be able to rely on only Tylenol soon. Hope is now on 5 mls an hour of feed. A huge jump for Hope, but she appears to be doing well with it. Hope will remain in the PICU at this point, but will likely go to the ward on the weekend or early next week.
We covet your prayers as we hand over our little girl once again tomorrow, it's never easy. Please pray that they can find some conclusive answers for the bleed to avoid it happening again. We are praising God for such a positive meeting that has changed the attitudes of many doctors involved in Hope's care. If the doctors believe she can live, they'll work harder to make that happen. Tonight we feel nervous about tomorrow, but encouraged about the future. With God, all things are possible.