Jacob had his first sedated echo on Friday. The process itself was fine, and he still managed to be all smiles and charm despite having gone 6 hours without a feed by the time the medicine was given to him. The echo showed us that the main areas of his heart are working as expected, and he is doing generally well. There is one exception - his left pulmonary artery. This artery has been mentioned to us in the past as a possible complication for the future - and now it seems that the future has arrived. Until Jake's heart cath on September 11 we won't know exactly how bad (or how good) the situation is for this artery. There is narrowing of the artery, and with the artificial shunt that was placed during his Norwood pushing the blood through this artery all is still well. The next surgery, the Glenn, will disconnect the pulmonary arteries from their existing blood supply - the shunt. The Superior Vena Cava is disconnected from the heart and redirected into the pulmonary arteries. With Jake's left artery being narrowed, it is possible that there will not be sufficient blood flow once the shunt is removed. If this is the case, then it complicates his Glenn procedure by adding on an additional problem to be solved. My understanding of the two solutions to this problem is that the archway that was reconstructed during the Norwood will again be reconstructed, or that a catheter balloon inside a high tech wire structure will be inserted into this artery and then expanded and removed -leaving the wire in place to hold the artery open. The first option, reconstructing the archway, brings the risk level of the surgery high and comparable to the risk level of Jake's initial Norwood. Given that we were expecting this Glenn procedure to be the "easiest" of the three stages, Jon and I are feeling very defeated by this. The second option, with the high tech "chicken wire"(lol!) placement has the drawback that this wire will not grow with Jake's heart and thus will need replacing as he grows - leading to more open heart surgeries. Our wonderful cardiologist gave me a sliver of hope, saying that it is still possible that the shape of the artery may still allow sufficient blood flow - and that this is what we should be focusing our prayers on.
So...wonderful people who have been praying for Jacob for months now...can I ask for a renewed strengthening and focus to your prayers? Pray for the following:
- For Jacob's artery to be whole enough to need no surgical intervention.
- For the success of his bidirectional Glenn procedure.
- For a recovery free from complications.
- For the Glenn procedure to give Jacob the strength to improve his feeding issues
- For accommodations for us at Ronald McDonald House Toronto
There is no way to express to you how much we appreciate your prayers. Each and every one of them.
We are going to be booking our plane tickets back to Toronto over the next few days. Jacob is well enough to fly on a commercial flight, so we will have no fussing with the air ambulance this trip! Provisions will be made for there to be oxygen available on the flight in the event that Jacob needs it. Before Jacob's Friday echo I was already dreading September. With this new understanding of his pulmonary artery my heart feels like it has permanently taken up residence in my toes. If the news that we get on September 11 is not ideal -I don't know what I will do. I have been struggling to keep my mental state positive and, to be perfectly honest with all of you, fighting to keep depression at bay. Most days I win - I have so much to be thankful for. But some days I lose - and spend the day in a fog of dread and tears. I am trying so hard to be strong for my children - both of them. Georgia needs me to keep her life happy and as normal as possible. Jacob needs me to keep it together so I can meet his needs - and they can be very demanding needs. My faith gets a good shaking every time something big happens - and this is no exception. Lord, please keep me strong and keep me focused on Your greatness and strength. In you all things are possible, I have believed this for as long as I can remember. Heal my baby boy, or at the very least, give him enough health and strength to life a long and happy life. Amen.
38 days until the heart cath. 38 days to wonder, fear and hope.
Hi Lisa,
ReplyDeleteJust wanted to encourage you about Jacob's upcoming surgery. Our son has had some narrowing in his left PA too! In fact he had this area patched at the time of his Glen (they can often patch the PA to enlarge it). If it's because the aortic arch is impinging on the PA that can complicate things a bit more but we were told that patching is often needed for these kids. Also, they really won't know what is necessary until the Cath. Echo's are notoriously difficult to get a clear picture for this. Also our son had a narrowing in his SVC after the Glen and ended up needing a stent placed. They were able to slit this stent and open it up during his Fontan so he has never (and shouldn't ever) need any additional surgeries to deal with this problem. I know it's hard to hear that there are additional issues especially when it feels that your little guy has already endured so much. But it could be that nothing extra is needed or that it's a common fix that they can tackle when they are in for his Glen. Try not to get too ahead of yourself. And no matter what they say - this surgery even with added complications is not as serious at the Norwood because Jacob is bigger and less fragile. Hang in there - this is the toughest part getting past the Glen and then God willing you will have a time to rest and recover as a family.
Amy Morton
Thank you for this message, Amy. It's very encouraging. Are you on Facebook? I love to meet other Heart Moms.
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