Ethan Out of His (Hopefully) Final Surgery

Ethan is out of the ICU and doing pretty well. We are back on the cardiac floor so they can watch his heart a bit more but all seems to be pretty normal. He isn’t eating too well yet so he is still on IV fluids until he can. He is also in what seems to be a lot more pain than he had with his heart surgeries. It makes no sense as they both seem like they would be extremely painful. He is such a champ and is handling this waaaaaaay better than I would be in his situation. They say kids are so resilient and Ethan is proving this to be 100% true.

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.

-h

Surgery Tomorrow

Well, the day has come for Ethan's last surgery (at least we pray it is his last for a good long time). His cranial surgery is tomorrow, November 17th at 10am. The surgery will be a little tricky for the surgeon as it is normally performed with the patient facing down for the surgery. But due to Ethan's fragile heart and sternum, they need to do it while he is on his back. We pray that the surgeon (Dr. Luerrson) will be able to reach and see all he needs to so we don't have to go back into the operating room in the next couple months. So that is one prayer request. The other is that the helmet Ethan will wear for the next few months after surgery will heal him correctly so he will not need any further surgeries on his head in the coming years. This is one thing we would love to get over with and not have to revisit...ever. But this is Ethan Harmon and he likes to do things the hard way sometimes. So we will see and all kidding aside, we know that God is in control of all of this and His will be done.

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

Ethan is Home!!!

Well, Eef the Beef is home!! We are elated to have our wee one home with us and we are really enjoying having a PINK baby for once. Since he was born, he always had a blue hue to him, especially when he was upset. Then, after the first surgery with all the hemolysis going on, he was yellow with jaundice. Now he is finally PINK!!! I know one day he will hate that I desperately wanted him to be pink because that is for girls and blue is much better for boys but I am not ashamed one bit for wanting a pink boy!

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

Ethan Got His Ticket Out of the ICU!

Well, barring any complications Ethan will be moved out of the CVICU and back to the regular cardiac floor again. This is great news because he is recovering well but we have really gotten to love our caregivers here in the ICU and bonded with many parents here. So its a bit bitter sweet because its kind of lonely down there on the 15th floor. The nurses have too many patients there and you kind of get stuck in your room because you are the main caregiver 24 hours a day. He is hooked up to all the monitors still so you can't walk around with him yet and you can hardly leave him alone for a couple minutes to go and grab lunch or dinner. I think it just occurred to me why I feel so trapped and claustrophobic there. I think I might be a little paranoid about getting stuck in hospital rooms after my 9 weeks stay this spring!

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.

Love, h

Out of Surgery ... Again!

Ethan is out of his second open heart surgery. This one was much shorter but it did still involve putting him on bypass and all that. Basically, Dr. Fraser couldn't save the pulmonary valve he built in the first surgery. He said its too bad because it was still in great shape. But it had to be removed with the muscle they had to remove. We knew this was a possibility going into surgery and that there was a chance he would have to put in some sort of implant. We wanted to avoid the implanted valve because they don't grow with Ethan and it would need to be replaced in a couple years. But Ethan's anatomy is such that he can hopefully do well with no valve at all. The valve that was built for him in the first surgery was really only supposed to last about 6 weeks anyway. Sooooooo he has no valve. I wish I could explain further why this is but I can't begin to explain it correctly.

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

Round 2

The echo cardiogram today showed that Ethan's heart is under distress and that the meds did not help at all. So tomorrow morning, he is having his second open heart surgery in 12 days. They will try to remove the muscle mass that has positioned itself on top of his newly constructed pulmonary valve. There are a ton of risks here that I can't bear to go into right now.

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

Maybe headed back into the operating room...

Well, I haven't had much time to update lately because Mr. Ethan has been very awake and his usual high maintenance self. For a time he even had more IBS (Irritable Beef Syndrome) than usual. It turns out, it was narcotic withdrawal! I know, crazy, right? He had to be so sedated the five days between his scheduled surgery and actual surgery because of his Tet spells and then after surgery for pain that he became addicted. My baby is on Methadone to ween off the drugs!!! Apparently this is pretty common but I never imagined I would be able to say that my 6 month old is a drug addict. : )

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!

-h