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Thursday, April 30, 2009

A Bump in the Road

Last Update 8:30pm
He's out of the procedure and he came out fine. They found that it was a blood clot. Its not great news but the neurosurgeon said it was better than him having an infection in his brain. Isaac will also still remain inactive on the transplant list because his blood cultures came out positive just today. So, they'll treat with antibiotics again and we'll go from there. We're just hoping that the episodes he's been having are coming from the infection that he has going on rather than from his heart. Again, thanks for your prayers.


Update
They took him for surgery at almost 7pm. If this abcess is pus or blood and not a mass, then the procedure should take 1 to 2 hours. Hopefully its not a mass that they have to cut in and biopsy then it would take several hours. Please keep praying for him.

In addition to the blood cultures and genetic testing, an MRI of his brain was also ordered. His MRI was done this morning and they called us in for a conult. It turns out that they found an abcess on the back part of his brain. They are telling us that it could most likely be one of two things. One is either pus, which would turn out to be a bacterial or fungal infection or two a blood hemorhage. Either way, both are treatable. So today, neurosurgeons are scheduling a sort of biopsy. They'll go into his skull, drain out the liquid and test to see what it is. Because we were so scared when they called this morning to tell us that something "abnormal" was found, we didn't get to ask if maybe this situation was causing his episodes or how that abcess got there in the first place. Another bad part is that since it's still not known if the abcess is an infection, he is listed as inactive on the transplant list. I assume that if its a hemorhage, than he'll be put back on and readjusted on his anticoagulants to fix that. We are still waiting for the neurosurgeon to come tell us when they will do surgery today, so I'll try to update as I get information. Thanks everyone for all your prayers. God Bless you all!

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Wednesday, April 29, 2009

Rollercoaster!

Agghhh....we want to scream. Isaac had a few Bradycardia episodes two days ago. His heart rate dropped, his pressures dropped, and he started to swell again. And it seems that when he swells, his CO2 and lactates go up. Our doctors are still trying to figure out what's wrong. We think that because Isaac had been awake more, moving around, and coughing up through the vent tube, of course he's causing more secretions and needing more suctioning. I think some of the nurses just didn't realize that they needed to suction him more often. So his lungs have showed to be a little more saturated. He had just started his feeds a few days ago and was on almost full feeds when the episode happened. So they stopped his feeds and added a few more drips to his already growing medication. They don't even know what's wrong with him yet. They've drawn some blood for genetic testing to see if maybe something is causing the high lactates, but we won't get the results for a few days. The worst part is that he is also on a drip to keep him sedated. They think that the agitation of him waking up and moving around caused these episodes. Right!!!?? They don't even know what else to tell us. More cultures were drawn a few days ago and some bacteria was found that is growing in his lungs. So here we go again with another antibiotic. Thankfully, this will not affect his status on the transplant list. They'll just treat and still keep him active. I don't even know what to say anymore. We just keep going downhill with little hope of getting back up. I wish his heart would get here...especially now. Not to say that it would totally fix him...but at least it would hopefully fix all his heart issues. Now we just have to wait and see if anything else is going on with him. He can't seem to recover well enough for them to extubate. We're just waiting to see if any of the tests show anything else going on. Please keep praying. Oh, but I almost forgot to post something very important. Last week, Isaac was baptized. Originally, we had thought to wait until we got home, but we finally just decided to get it done.



So, Eli is still here and because Isaac is in CVICU, it hasn't caused any real major issues. We try to keep him occupied and so here he is playing one of our computer games (memory). He's very good at it and who would've thought a three year old to know even how to use a laptop....
video

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Sunday, April 26, 2009

Better Days are Coming...

Sorry for such a late update. I guess Texas Children's internet was down this week. This is the first day that internet has been up since Wednesday.

So, Isaac has been doing a whole lot better. He's looking more and more like himself everyday and more so today. Its kinda sad that he's more awake now and because he's still intubated, they want to keep him calm and sedated. I really hate when they "have" to give him sedation. I tell my husband that its only because they don't want to take the time to sit there with him, talk to him, and calm him down. He's only mad because the breathing tube is agitating. Since he has been doing so great, they have finally been able to wean off of the vent support. Hopefully, today he will be doing volume support (exercise with his lungs on his own) and be extubated within the next few days. We can't wait!!! Its been a whole two weeks, and I think we took holding him for granted now that we can't. There hasn't been too much that changed since my last post. Although, the doctors have said that Isaac may have been having problems recovering because of a yeast infection that they found he had. Its not really certain though. Doctors' first instinct is always that its a cause of his already bad heart function. We knew it wasn't the whole time...it's always been an underlying problem that makes his heart function worse..whether its dehydration, staph infections, urinary tract infections. It's all part of being at the hospital. I mean the heart function is not necessarily worse but all of these things will just make his heart try to work harder. So, its been a busy two weeks, and he's finally really progressing. We're really hoping that after he gets extubated, that they'll move him down to NICU. Its so much easier to see him down there and because they usually don't have any need for sedation. Let's not get our hopes up and count our chickens before they hatch. We'll just take it one day at a time. No new pictures of Isaac yet, but he IS 2 months old today. I really don't want to take many pictures while he's intubated. It's heart-wrenching to see him uncomfortable.

On a great note though, my mother-in-law and sister-in-law brought Eli with them when they came this weekend. We were so ready for him to come back and planned a short fishing trip. For months now, Eli has been asking us to buy him the Rocket fishing rod ($29). So, we finally decided to buy him one before he got here and come to find out that the fishing rod rang up for $10. We couldn't believe it. I don't know if it was an error on their part, but we didn't hesitate to go in and buy another one. Yesterday morning, we took a short 20 minute trip to the La Porte Beach to go "fishing." Of course, we didn't catch anything but Eli had a great time. This boy is too smart for us. The fishing rod was a little difficult to figure out and manuevre, but he figured it out in no time. I'm posting a few pictures but oh yeah, when we started settling on a spot at the beach, a snake washed up. Ughh...scary!!





Daddy teaching Eli how to fish with a real fishing rod before the rod broke into pieces (cheap pole) after casting it out.



and Eli just being ELI.....







OH YEAH...I forgot...Eli is staying with us for a little while. I had planned on asking him if he wanted to stay with us for a little while but didn't imagine that he really wanted to. We asked him and he really had not hesitation. So, for at least a week, I'll be spending morning and afternoon with Eli and then after Ernest gets out of work, we'll be heading to the hospital. As bad as I feel for leaving Isaac alone at the hospital most of the day, I know Eli needs to be with us too sometimes. We'll do a week and see how that goes.

Please keep praying for Isaac's new heart. We can't wait to bring him home!!!!

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Friday, April 17, 2009

A Little Better Every Day

So, Isaacs Cath doctor scared us yesterday when he said that because Isaac has been having problems these past few days that he was scheduled to have a diagnostic catheter procedure today. Another one!? He said "this won't be an interventional cath, but just one to get more information on whether Isaac will need surgery again." But, he also told us that it was tentatively scheduled for today unless Isaac showed improvement overnight. We went home dreading another cath that he would have to recover from.... We got here at "0600" this morning and to our surprise we start talking to Isaac and HE OPENS HIS EYES! We were ecstatic...that means he's getting better. So, we talked to him while we were waiting on doctors to consent us for the procedure. Finally, they came in and said the cath was cancelled. Two doctors came in to explain to us (at different times) that they cancelled it because in their discussion about Isaac, they feel that this procedure may not even help him but might just worsen the recovery process. What scares me about this is that there's not much more that can be done for Isaac at this point, unless its something that medicine will help. With the cath that was going to be done today, it was said that they could get more information as to whether he needed his pulmonary bands tightened more. In their discussion though, his surgeon said that the bands could probably not get tightened anymore without damaging the arteries. In our opinion, we still think that he just needed help with getting rid of the extra fluid and more recovery time. It looks like we might be right!!!! He's a fighter and our champ!!!! He's looking more and more like Isaac everyday. He's still on the breathing tube and all the drips he was one two days ago. No other major changes, but he is doing better at breathing on his own. We're looking forward to maybe extubate him this weekend unless he does it himself...(gasp)! He's starting to move more and be awake longer even with sedatives. Good boy....you show them!!
Now, even though it may sound scary that not much else can be done for Isaac from a surgery standpoint, we had a good talk with our Transplant coordinator. We had many questions floating around in our heads, and especially this week with Isaac scaring us half to death. All our questions were answered and come to find out...she told us that a heart was offered to Isaac two weeks ago... but the transplant team did not feel like it was a "good offer." There's many criteria that TCH has to go by and are very picky about the hearts that are offered to them. We're happy...we don't want them giving him just any heart! They'll know which is the right one for him. But with that, it gave us much hope that at status 1B at least he has gotten an offer. Not too much longer!!! Keep praying...He's listening! God Bless you all that think of Isaac every night.



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Thursday, April 16, 2009

Rough Couple of Days...

3 days post heart cath, and its a slow recovery. They were hoping to extubate Isaac on Tuesday but while they were testing to see how well he did on his own, his heart rate went up, his co2 output was not great, and he was turning purplish. So, he is still on a breathing tube and has so many different ivs on him. He was extremely swollen the last couple of days so he was put on a Lasix drip. When we came in this morning, most of the swelling went away. Since the cath on Monday, he's had two echos done and his heart function is not great. They are still trying to figure it out. In my opinion, I think it was all the fluid build up that he was not getting rid of. Now that he's been on the drip for a whole day, his heart rate has come down gradually and he just looks overall better, but what do I know... Because it was an easy fix, that's what I'm hoping it was. I'm hoping he doesn't have to have any more procedures done until he gets his new heart. He's on 4 different drips...heparin to thin his blood, calcium, Lasix, and milrinone to help his heart function. I wish they would figure out if there is another underlying problem. One good thing that came out of this, is that he is on the highest status for a heart transplant (1A). In the mean time, we wait and take it day by day. Please pray that his recovery continues to go well and that his "angel" heart won't take too much longer to get here. God Bless everyone!



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Monday, April 13, 2009

Cath went well

Sorry so late on the post. Isaac went in at about 9 this morning and they didn't finish until about 5. It took longer than expected because the main artery that they use for the cath was completely blocked. So they took time to unblock it befofe they could start putting in the stent. That part was finished and they had a problem with the stent being too big so that part had to be fixed also. Although the procedure took long, Isaac was stable throughout the whole thing and came out fine. At the moment he's a little swollen and his right leg is especially blue and swoLlen. He has already tried to wake up but doctors still want to keep him comfortable and mildly sedated. They are hoping to extubate tomorrow, so prayers that it goes well. Thanks everyone and God Bless.

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Friday, April 10, 2009

Back to CVICU

Isaac is back in CVICU...again. Last night, about 9pm, Isaac's oxygen saturations went down to the 60's and occasional 50's. He is supposed to be saturating at above at least 70. It took them awhile to figure out if he really was or if the probe wasn't working. They tried everything...changing from feet to hands, changing probes, and nothing changed. So doctors were called in, they called for an xray and they called for them to put him on oxygen. As soon as he was put on oxygen, his saturations came back up. He was on oxygen for the rest of the night and this morning. During rounds, one of the doctors turned off the oxygen to test him, and he started desaturating again. So again, xrays, blood cultures and an echocardiogram was ordered. Doctors filled the room, it was loud and they were stressing him out even more. They wouldn't let him just rest. Everyone was trying to do every kind of test one right after the other, until I finally told them they were stressing him out. Doctors finally just decided to go ahead and move him to CVICU for closer observation. Everything is pretty much the same...still on oxygen but stable as long as he stays on oxygen. The heart cath to stent his ASD is still scheduled for Monday unless something else changes drastically. He is currently on IV fluids and not feeding. I feel so awful! Sometimes hunger pain is the worst kind of pain there is. But because he was so tired from this morning, he's been resting most of the day and hasn't really cried for his bottle. He will be observed throughout the night and then they'll see about starting his feeds up again. We still don't really have any answers but doctors are hoping that the ASD is causing all of this and that it will be gone once the procedure is done on Monday. Please pray!!!! We are so stressed at the moment. They've tried to reassure us that being on oxygen is not so much an emergency, but still....its something that changed so fast.

On a better note, Eli is here. He arrived just as all of this commotion was happening, so he was not able to see his brother. He's also got me worried about him. His eczema/allergies have flared up much more than ever. That's another reason for him not being able to see is brother. I'm hoping we can get him cleared up by Sunday before he goes back home.

So again, please keep Isaac in your prayers this weekend. We're hoping this procedure on Monday will keep him stable again without the oxygen. Wouldn't it be nice for Isaac to receive a new heart for Easter?!



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Thursday, April 9, 2009

Prayers for Heart Cath Procedure Monday and HAPPY EASTER!

So we've been pretty comfortable and a little happier getting to stay with Isaac in his new room. Yesterday morning, during doctor's rounds, they surprised me by telling me that a heart cath was scheduled for today. Nothing much more was said but one of the doctors did say that the heart cath doctor would be speaking with us later today. I waited....and waited until finally at about 5:30pm, that same doctor came and said that they had a problem. It was realized that there are no rooms available in the ICU units and so therefore it could not be done today but that it was going to be scheduled for Monday instead. Sure, its not surgery but pretty close. They will be going in to stent his ASD. This is actually a process that is done with the hybrid norwood, but since the hole was already there, they said "why fix it if it ain't broke." They have found that some ASD's close on their own, but some stay open. And with Isaac, they thought not to mess with it in case it didn't close up. Since his last echo that was done, they have said that the hole is gradually getting smaller and that they need to do this procedure now than later before its really too late. I'm a little relieved that it won't be done until Monday. It'll give us a chance to spend Easter with Isaac and Eli without Isaac being under sedation. We'll try to get some good pictures of them together. But anyways, I don't know what time on Monday, but I'll post as we get anymore information. Please keep praying! His surgeon is surprised at how well Isaac is doing at the moment. He's still very stable and is almost taking half of his feedings by mouth at almost every feeding. Sometimes we can't get him good and awake for his feedings. Also please keep praying for his "angel heart" to get here soon. God Bless and have a Happy Easter!


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Friday, April 3, 2009

My New Room

Isaac is finally out of NICU. We can't believe it! We probably could've been moved a long time ago, but I think Isaac liked the nurses there too much. Everytime they would tell us that they had a room and we were moving, Isaac would act up. Nothing major...just a little blood in his spit up. By the way, it was nothing! Either the baby aspirin or the NG tube caused it. The aspirin was given to prevent the stent from any clots, but they told us that they are taking him off of it to see how he does. So anyways, we have moved in with him. Its not at all like they said it would be. Sure, there's quiet and privacy for maybe an hour at a time. Last night was pretty eventful..we met so many nurses and doctors and just too many people during the night. I hope its not like this every night. NO SLEEP! They told us it'd be a pull out couch enough for two people. Please....barely! Its the size of an XL twin. But, we have our own bathroom and shower... But really, we just wanted to let you know, that Isaac is not considered critical anymore. The only other thing they've changed with Isaac is that he is taking as much as he can by mouth at every feeding time that he's awake. He has improved so much! He won't take the whole bottle but at least he attempts as much as he can...which is usually about a quarter of his feed. Even if we are tired and deprived of sleep, its all good news. We shouldn't complain. We've been extremely blessed! I'm also excited to see Eli for Easter. I wish it was longer but its only gonna be for that weekend. You can't imagine just how much we miss him. Everything reminds me of him and I try to avoid them. The cartoons on tv, the happy meals that I used to eat with him. But, we'll take what we can get. I just hope Eli (and I) take it well, when we have to part again.

A Dedication to the Angel that gave me my new heart!

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