Wednesday, November 18, 2009
The surgeon was very pleased after the surgery and hopes that after all the healing takes place, he won’t have to have anymore surgeries on his head. He said when he took out the section of bone that was the huge indention or headband looking part, the rest of the head popped right into place. Even now, we can see a marked difference. Of course time will tell. The plan is to go and get fitted for his helmet on November 30 and then get the helmet sometime later that week. After that, depending how he heals, he will keep the helmet on for anywhere from 6 weeks to 3 months or so.
So praise the Lord things have gone so well so far. After all we have been through, the Lord continues to guide us, comfort us and bless us. He has never left us and although this surely hasn’t been our timing, His timing has been absolutely perfect. Your prayers have been critical to us and we are so blessed by your encouragement.
Monday, November 16, 2009
I will update tomorrow when I hear something. This surgery should not be as long as the heart surgeries and less risky in that he won't be going on bypass. But is still cranial surgery and there is usually alot of bleeding because it is such vascular tissue. Thank you, friends, for your continued prayer and encouragement for the last 2 months. It really is what is helping us get through this time.
In Him, h
Wednesday, November 4, 2009
He is doing very well and is "cordless" for the first time. It is strange to carry him around and dress him without worrying about his monitor cords. As far as his heart goes, he still has a bit of a murmur because the patch between the ventricles leaks a bit. It's not that the surgeon messed it up, its just impossible to seal it completely due to all the muscle fibers that they have to go through. Hopefully, the lining of the heart will grow over it and close it all the way eventually but if it doesn't, they don't expect that it will cause any trouble because the leak is so small. His heart appears to have decreased in size and the fluid is less around his heart and in his lungs. All good things!
Now we are finally on the cranial surgery. It has been rescheduled for November 17th. The cardiac anesthesiologists will do the surgery and he will be able to recover back in the CVICU in case something were to go wrong with his heart. The doctors all feel the most comfortable with this as the risks are greater to his fragile little heart. At least we know the staff and they know him!!
Another couple proud mama moments lately... Lauren got her first tooth!! She munches away on anything she can get in her mouth. So cute! And Abby Grace turned 3!!! She informed us that she is big now that she is three and she will be going on the potty soon but not today. Maybe tomorrow. UGH! She is just toying with us! : )
Your prayers have kept me going... -h
Monday, October 26, 2009
Anyway, enough whining from me ... Ethan is doing well!! Praise God! We are going to move this evening so once we get settled in, I will update more. The neurosurgeon is out of town this week so we really won't be able to plan too much for the cranial surgery this week. Plus I don't think the cardiologists are too keen on him going in for a third massive operation in 3 weeks. So I know it won't be this week but if everything continues down this path, it really could be next week. As a mother, I wish they would wait forever but I know its not an option.
Thank you so much for all you prayers and support. I haven't had much chance to speak with even my closest friends and family too much but I feel your love, encouragements and prayers and please know that we love you so much. And I hear each day about people praying for us that don't even know us and it is such a ministry to our family. You are so appreciated and you have blessed our family immensly with your prayers.
Friday, October 23, 2009
So for now, he is back in the CVICU and is stable. He is still intubated and very sedated but to me he looks great. We are back in the same room we were in after his first surgery. We are a little superstitious because it seems that all his issues started when we moved to the other ICU room. So we have requested NOT to be moved to room 5 this time. : ) - And yes, they looked at us like we were crazy.
Thank you God for holding little Eef in your hands. - h
"And he took the children in his arms, put his hands on them and blessed them." Mark 10:16
Thursday, October 22, 2009
Please pray for little Ethan who has been such a trooper with all he has been through. Pray that all goes well and that he stops becoming the exception and becomes the rule. In that, I mean everything that has happened to him in the last two weeks is just not normal. I can't tell you how many times I have heard, "We sure haven't seen this before" or "that doesn't usually happen" in the last two weeks. His little body has been through so much and he still has his cranial surgery looming as well. Please pray for healing and God's miracles on his wee body. And if you have a moment, pray for Abby and Lauren as they have seen very little of their parents (especially mommy) in the last couple weeks. They are handling it just fine thanks to my parents. Actually its mommy who has been having a hard time with it! : )
Your prayers mean so much to us. -h
Wednesday, October 21, 2009
Soon after my last post, the breathing tubes came out and shortly there after, we noticed some blood in his urine. We figured that it was just trauma from the Foley catheter but of course it was not that easy. It was not actual red blood cells but blood parts. At first it was thought that this was some sort of transfusion reaction because his red blood cells were dropping dramatically causing him to need two more transfusions. Now the thinking is a bit different. Somewhere in his body, probably in his heart, the red blood cells are being broken apart and leaving his body through his urine. The process is called hemolysis. They say they usually see this in other kinds of heart procedures where they put in artificial valves and such but not usually in Tetralogy of Fallot patients. While his red blood cell count is still dropping (possibly leading to another transfusion) the hemolysis seems to have slowed down. This is mystery # 1.
Now on to mystery # 2. His heart rate became elevated and his oxygen saturations in his blood lowered a bit on Saturday. This earned him an extra night in the ICU but we are now in the regular cardiac unit hospital rooms. After repeated echocardiograms and many discussions between cardiologists and surgeons, it has been discovered that the pulmonary valve that was constructed during his surgery has some sort of muscle bundle on it causing the valve to actually obstruct the flow through the main pulmonary artery. A couple weeks ago, not a problem. He had a bunch of collaterals and a hole between the ventricles to kind of make do. But now that all this is repaired, big problem. He is on a beta blocker to slow his heart to allow the heart to work more efficiently past this obstruction. If this works, it may be a longer term solution. If not, we will be back in the OR probably in a few days. We are having another echocardiogram tomorrow to help make the decision.
Leave it to Eef to be the case that has completely thrown the doctors for a loop since the beginning (remember the flu tests??). He is hanging in there and is such a strong little munchkin. We thank you again for all your prayers, we still need them!