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
Monday, October 12, 2009
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
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
Thursday, October 8, 2009
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
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
Wednesday, October 7, 2009
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
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
Monday, September 28, 2009
Update on Ethan...
Ethan hamming it up for the camera - 5 mos.Ethan came through the catheterization in August with flying colors. It was pretty funny when he woke up after the procedure he immediately started screaming at the top of his lungs (according to the nurses) which is just so Ethan. Turned out he was still hungry and was mad at them for making him sleep instead of eat. So they fed him a bit and he was fine. He was pretty cute then because he looked awake but if you really looked in his eyes, you could see that he was still way out of it.
They got a good look at his heart and devised a plan. The good news is that he will only need one open heart surgery! The plan was to operate on his heart at the end of October but as with most "plans" we make, God has other ideas. Ethan has a craniosynostosis which means that the sutures in his skull closed too early restricting brain and skull growth. He has no soft spot on his head (its closed) and everyday his head becomes more and more misshaped. He already had a CT scan and his brain is in the shape of an hourglass. His brain looks like its being squeezed. They say that his brain condition looks good for now which is good news. But we need to fix it soon to prevent any injury to the brain and also because the longer we wait, the harder his skull gets. Apparently once his head gets too hard (usually after 6 months old), the surgery to correct the problem becomes even more complex and extensive. The neurosurgeon wanted to operate immediately (this was at the end of August) but wanted to run it by cardiology first. Of course, they said no way can he go through cranial surgery with his heart unrepaired. So, the heart surgery has been moved up and the neurosurgery will follow within 10 days or as soon as it is safe.
The date for the open heart surgery is Oct. 8, 2009 with another catheterization the day before to take care of some things the heart surgeons will not be able to reach during surgery. Hopefully he will recover well and then the neurosurgeons plan to do his cranial surgery on Oct. 19th. He will not come home in between surgeries and will be in the Cardiovascular ICU in between. So we are looking at about 2 weeks in the hospital. We have family coming down to help with the other kiddos while we are focusing on Ethan and we are so thankful for their generous giving of their time.
SO! I will be updating alot more in the next couple weeks so you can know what to pray for specifically but it doesn't hurt to start those prayers now. I am still a bit numb to all that is going on with him and really still in a bit of denial that its going to happen. We have been so blessed with such good news up to this point regarding Ethan's health. We really have had the "best case scenario" all along. Things could have been soooo much worse. But reality is knocking at our door as I call the blood center to find out how to donate for my son who will for sure need transfusions during both procedures. Its hard to imagine that he needs these surgeries just to survive but the cardiac surgeon reminded us of that fact. Ugh!
I know God is all over this but we would love for ya'll to pray for our little "Eef." He is such a strong little guy who is indeed a fighter (not to mention quite a charmer).
Thank you, friends! - h
They got a good look at his heart and devised a plan. The good news is that he will only need one open heart surgery! The plan was to operate on his heart at the end of October but as with most "plans" we make, God has other ideas. Ethan has a craniosynostosis which means that the sutures in his skull closed too early restricting brain and skull growth. He has no soft spot on his head (its closed) and everyday his head becomes more and more misshaped. He already had a CT scan and his brain is in the shape of an hourglass. His brain looks like its being squeezed. They say that his brain condition looks good for now which is good news. But we need to fix it soon to prevent any injury to the brain and also because the longer we wait, the harder his skull gets. Apparently once his head gets too hard (usually after 6 months old), the surgery to correct the problem becomes even more complex and extensive. The neurosurgeon wanted to operate immediately (this was at the end of August) but wanted to run it by cardiology first. Of course, they said no way can he go through cranial surgery with his heart unrepaired. So, the heart surgery has been moved up and the neurosurgery will follow within 10 days or as soon as it is safe.
The date for the open heart surgery is Oct. 8, 2009 with another catheterization the day before to take care of some things the heart surgeons will not be able to reach during surgery. Hopefully he will recover well and then the neurosurgeons plan to do his cranial surgery on Oct. 19th. He will not come home in between surgeries and will be in the Cardiovascular ICU in between. So we are looking at about 2 weeks in the hospital. We have family coming down to help with the other kiddos while we are focusing on Ethan and we are so thankful for their generous giving of their time.
SO! I will be updating alot more in the next couple weeks so you can know what to pray for specifically but it doesn't hurt to start those prayers now. I am still a bit numb to all that is going on with him and really still in a bit of denial that its going to happen. We have been so blessed with such good news up to this point regarding Ethan's health. We really have had the "best case scenario" all along. Things could have been soooo much worse. But reality is knocking at our door as I call the blood center to find out how to donate for my son who will for sure need transfusions during both procedures. Its hard to imagine that he needs these surgeries just to survive but the cardiac surgeon reminded us of that fact. Ugh!
I know God is all over this but we would love for ya'll to pray for our little "Eef." He is such a strong little guy who is indeed a fighter (not to mention quite a charmer).
Thank you, friends! - h
Tuesday, August 11, 2009
Ethan's heart cath.
We are here at TCH for Ethan's heart catheterization this morning. Currently he is in the OR and the nurses said he is doing well so far. We got here at 6am and he was doing well despite the fact that he eats usually at that time. But by 8:15am he was not happy that we hadn't fed him yet. When the anesthesiologist picked him up to carry him the OR he immediately stopped crying and was facinated by the Superman hat thing he had on. Just like a boy! Of course, I was an emotional wreck watching him being carried down the hall!
The plan is for us to be here for at least 12 hours after the procedure and possible overnight. I will try to post updates as to what is happening when I have a moment. I suspect I will have less time once he wakes up.
Keep us in your prayers!
-heather
The plan is for us to be here for at least 12 hours after the procedure and possible overnight. I will try to post updates as to what is happening when I have a moment. I suspect I will have less time once he wakes up.
Keep us in your prayers!
-heather
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