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

Moving along...

Well, Ethan is still in the CVICU and he is intubated but seems to be progressing pretty well. They say here that anytime they are able to take tubes out and probes off, its a good sign. So this morning they were able to take the drain tubes out of his chest as well as a pressure monitor that was basically in his heart. They should start to try to get him off the breathing tube today so that is also a good sign.

He has had a couple episodes in the last 24 hours if what we so affectionately call "IBS" in the Harmon household. This stands for Irritable Beef Syndrome (we call him Eef the Beef). He apparently would wake up crying out of staggering amounts of sedation and basically hold his breath and bear down. I don't know if he thinks he can get the tubes out this way or if this is just his way of telling us he is not happy about his little situation here. Of course when his does this all kinds of alarms go off and he gets lots of attention. Now that I think about it, that is the reason... attention!! : ) While these episodes are a little scary, the nurses seem to have learned how to calm him a bit and get things back to normal. As a mom its pretty hard to see his stats drop again as we thought we were past all that now that his heart is repaired but no one seems too worried. But is does provoke them to be right on top of his sedation schedule and to always have extra nearby.

He will squeeze our hand which is pretty cute and will watch tv in a dazed, drugged haze. They are still evaluating whether or not they can do his cranial surgery during this hospital stay but if all goes well, they probably will do it, just delayed from the original date of the 19th.

Definitely still keep praying for him as he still has quite a bit of recovery to go. Being up here in the CVICU, I am seeing so many sweet little kiddos with devastating situations. Many of them so much smaller than Ethan. Even though this is probably the hardest situation of our lives, it could be waaaaay worse. We are truly blessed. I have gotton to know two of the families here (one we knew from the NICU) and while Ethan's situation is indeed life threatening, these two boys could pass at any moment and there really is not alot they can do for them. So I am thanking God for our little guy and even though he was a complex fix for the surgeon, I am praising Him that Ethan can be fixed.

You all have been so faithful in praying for little Eef and we thank you. Please continue to pray and add Baby R (6 mos) and Baby Y (20 days) to your list.
-h

Longest Day of My Life...

Well, little man is resting back in the CVICU and looks pretty good for all he has been through. He keeps trying to wake up and fuss and they have to sedate him further. We keep telling them (docs and nurses) that it takes A LOT to sedate this little munchkin but nobody believes us until they experience it. He does still have in the breathing tube which is a blessing for now. He has way too many lines coming out of his wee little body that he would just love to get his hands on. His blood pressure is a little high so they are keeping and eye on that and giving him some meds for that. Other than that, he is stable. Praise God!!

We finally talked to the surgeon about 5:30pm today and he said that it was a complicated procedure due to the way Ethan's heart formed. Before the actual repair, they had to close off some more collaterals they didn't know about. They were tiny but were not allowing Ethan to get on the heart/lung bypass machine properly because the pressures were lowered with them open. They patched the VSD (hole between the ventricles) with some of Ethan's own muscle from another part of the heart. He also widened the pulmonary artery with the same sort of patch. Apparently Ethan really didn't have much of a pulmonary valve to speak of so Dr. Frasier reconstructed it as best he could. He chose to not use a synthetic valve or a human cadaver valve as it would not grow with Ethan and probably force him into surgery again in a few years. With the reconstruction that he was able to do, it will leak and eventually need to be fixed again but hopefully not for a decade or two. Apparently Tetralogy of Fallot patients do pretty well with this kind of reconstruction.

I know there is a ton more they did in there but I think I hit the main parts. He came off of bypass very well and is doing well. The surgeon said that in surgery they did not see any signs of him having the flu or being sick based on the secretions they were monitoring so lets pray that nothing develops. So, while all is well, he just had major surgery. Please pray for no complications and that he comes out of this like a champ.

To God be the glory! -h

Ethan is in surgery....

Well, the day is finally here. I have to say that I wasn't sure it was ever going to happen so I was really a little caught off guard when the anesthesiologists wheeled his bed out of his ICU room down the hall to surgery. He had been pretty sedated for most of the weekend but as the weekend progressed, his stats were not looking so good. He had a pretty good "Tet spell" when I was there on Saturday morning that was pretty scary. This is when his oxygen saturation in his blood drops extremely low causing him to turn blue. Usually when this happens to Ethan, he is screaming. But this time he was completely calm and didn't come out of it right away. Normal saturation levels are 96-100% for us but for Ethan, his normal is 75-85%. During this spell, they hung around 30-40%. Saturation this low for any period of time can cause brain damage so this was pretty scary. Also, this morning his heart rate kept dropping as well. I guess just another sign that its time for his heart to get fixed.

He still has no signs of flu or sickness but everyone is still being cautious. He has been in the OR since 9am but it takes about 3 hours of prep just to get to the actual surgery. Last update we had, they were just about to put him on the heart/lung bypass machine. Then his heart will be repaired. After that, the tricky part is getting him off the bypass machine. I will update later as I hear something.

Thank you all for your prayers. -h

And the curve balls keep on comin'!

I am not a huge baseball fan but I think I do understand that if the pitcher throws you enough curve balls, you should start to expect them and adjust your stance accordingly. Right? Too bad I didn't adjust my expectations sooner because now I am confused and disappointed again. It's my prayer to not get so hurt and emotional each time one is thrown, but to be strong and clear minded and ready to celebrate each success with little Ethan.

The last 36 hours have been one curve ball after another. Wednesday evening, we got some very strange news. They told us that Ethan had the flu. It was influenza "A" but were not sure what particular strain at this point. Might be H1N1, might not. Yesterday before the cath they kept asking if he had any cold or flu symptoms and my answer was always a confident no, but his twin has a bit of a cold. They went ahead with the cath not seemingly concerned about this info. That evening, they were doing some pre-op testing which included a flu test due to the fact that it is spreading so rapidly. Lo and behold, it was positive! We were stunned. The plan was to still go ahead with surgery since he had no symptoms and they had closed off some of his blood flow to the lungs in the cath lab. Can we say "between a rock and a hard place???" But then he developed a low grade fever overnight. Dr. Fraser (the surgeon) made the call Thursday morning not to put him at risk and to put surgery on hold and see what, if any, symptoms develop and plan on maybe operating on Monday or Tuesday.

So then Thursday afternoon, they had Eef's breathing tube removed since surgery was not on the immediate horizon. He is on oxygen, though, due to the fact that he has very little oxygenated blood flow going to the lungs on his own now. He will stay in the CVICU until he does have surgery due to the fact that most of his collaterals are closed and his pulmonary artery is still unrepaired. He was still a little sedated and sleepy Thursday afternoon so Bill went home and I was just hanging out here with him should he need me. Then I get yet another curve ball that I tell you I really wasn't expecting. The more definitive tests were back and his flu test was NEGATIVE!!! Yes, you read it correctly, now they are telling me they are NEGATIVE! No flu! By the way, when we thought Eef had the flu on Wednesday evening, we rushed the girls to the after hours pediatrician to get tested and they both tested negative as well. We thought their tests were probably wrong since surely TCH wouldn't get Ethan's wrong! Our whole family is on Tamiflu now for ...well... no reason! : ) Also since his first reports of fever, Ethan has had pretty normal temps.

We are still in a holding pattern but for much different reasons. They couldn't go ahead with the surgery today because there was an emergency case today that required so many resources that all other surgeries were also cancelled. At first I was a little irritated but then realized that I would want them to do that for my child if his life was on the line. I hope that everything went well for that sweet child. Ethan also has quite a bit of congestion now that I think is in part due to being intubated but we want to be safe and sure of what it is before we proceed.

So we are hanging out here indefinitely. Ethan wanted out of here earlier today and really could not be consoled. The problem with him getting so upset is that his stats drop dangerously low now that they have closed some of the collaterals. They tried many different sedatives this morning and Eef the Beef just laughed at their efforts. They were shocked at how much it took to calm him down. Of course, I am thinking, FINALLY someone understands what I go through with this little man daily. Even the baby narcotics couldn't calm him down!! : ) But he finally gave in 5 hours later and is sleeping soundly as I type.

I have my moments (quite a few actually) where I feel sorry for myself and all that we are having to endure. It seems nothing happens normally or as we expected lately but then I see the families who are also here in the CVICU. While in the waiting lounge earlier I overhead a family talking with a friend about a transplant with only one good lung. There are several patients here in heart failure which is eventually where Ethan will be if his heart goes unrepaired. But it is not him today and we are grateful. So what if we have to wait a few extra days and our lives are completely turned upside down for a little longer than expected. We have Ethan now and as the song I heard on the way to the hospital this morning says, "I will praise you in this storm."

Stay tuned! I have a feeling that the roller coaster ride has just begun...
Love, h

Resting comfortably...

Ethan is out of the cath lab and doing very well. He actually tried to wake up out of sedation so they had to give him some more "juice" to make him sleep. They want to keep him sedated because they don't want to have to reintubate him in the morning and they already prepped him for surgery with all the necessary IV's and such. So for now, he will just rest in margaritaville! As I look at him I am amazed at how much he has grown. The last time I saw him all "tubed" up like this he was in the NICU and just a wee one! He looks like a little boy now!

I know, you're thinking yeah, yeah, get on with it. How did the cath go? Well, it went as expected for the most part. They only closed off one of the collaterals and found the other to be so small that if they tried to block it, they risked loosing the coil they put in to close it. The third, the surgeon will close, as I mentioned earlier. So, barring anything unusual, we are go for tomorrow's surgery. It will be about a 6 hour procedure starting at about 7:30am so I will have some time to update during it.

Please pray for the anesthesiologists and the surgeon, Dr. Fraser. They do this stuff all the time and are the best in this part of the country at what they do. But God is in control and we pray for His guidance for them. Pray for "Eef the Beef" as he is known in the Harmon household. This is alot for a little 13.2 lb. man. Although I have seen some teeny ones here in the CVICU helping me remember what a little fighter he has been. Pray for Lauren and Abby as they seem to have some sniffles and Lauren with a bit of fever. I hope we got Ethan out of the germs before he caught anything and please pray we don't get anything or we can't go see him. And finally, pray for Bill and I. We have not had much sleep lately making this all that much more emotional. Whew! That's a long list!

Thank you, friends and family, for your prayers and support. We can feel them!
-h

In the Cath. Lab now...

We made it here this morning and so far, Ethan has not come down with whatever Lauren has right now. He was in really good spirits and I just got the call that the catheterization is underway. It should take a couple hours still but so far the nurse said that Ethan is doing great.

So, what they are doing is closing some of the "collaterals" that formed to move blood to the lungs since his pulmonary artery is too small at the moment to do its job (the surgeon will make it bigger tomorrow). These collaterals are extras that formed during development that the normal heart does not have. The doctors always say its "Nature's way" of taking care of a malformed heart but we know, of course, its God's way of helping little Ethan along until he could have surgery. Up until now, that is really how Ethan has been living. He has depended on these collaterals to move the blood to the lungs but he is getting bigger and they are just too tiny to sustain him for too much longer. If you have seen Ethan recently, you can tell that he is just a bit more blue in color at times than he used to be.

They are closing most of the collaterals that the heart surgeon cannot reach during the open heart procedure. They probably will leave one of the bigger ones open that the surgeon can reach so that he can get enough oxygenated blood to the lungs until tomorrow morning when they will fix his pulmonary artery and valve. The risk is that even closing just one of these collaterals will cause him to have a "Tet spell" and he will have to have emergency surgery today.

We thank you for your prayers! And we'll keep you updated. Now I have to go and call home to make sure the girls aren't driving my dad crazy! : )

-h