Reflecting…

 

While Logan has turned one years old it has left me with much time to think about the last year.  When we got the diagnosis, how devasted we were.  I think back to that period and I can’t believe how little I understood and how little I knew about what life was really going to be like.  And then I think back to our very ugly NICU experience which really opened my eyes to massive problems our medical system has.  It opened my eyes to the massive discrepancies between heart centers, cardiologist’s, and other clinicians.  It has changed my world view so much.  Things that were once important are no longer important, things that would’ve seemed silly to worry about just a year ago, worries me constantly every day.  People that you thought would always be there for you….disappear.  And complete strangers become your family.  The journey our family has been on in the last year is about as far off the trail that we set out on as one can go…but I am okay with that. 

The statistics for right atrial isomerism (the specific type of heterotaxy that Logan has) are beyond freightening.  I have read studies ranging from 20-40% survival rate at one year old.  And at five years this number dwindles even further….and statistically the amount of these children that make it to adulthood is painful to even think about.  I try not to dwell on these numbers.  Logan has had every single risk factor for death even among heterotaxy kids (right isomerism, asplenia, severe AV valve regurgitation, obstructed pulmonary veins) and he beat the odds.  I have so much hope for Logan because I believe we have the right team of doctors.  I think we have a brilliant cardiolgoist that has done everything under the sun to keep Logan out of the hospital and to make sure that thru all this he has a good quality of life.  And we have arguably one of the best pediatric heart surgeons in the world, who beyond being exceptionally talented, has the biggest heart and is incredibly compassionate.  I really feel like we can do this.  I really feel in my gut that Logan is going to be one that grows up to be an adult.

 The next surgery is going to be a big one and very risky.  The surgery is going to attach his IVC (inferior vena cava  – the artery that goes to the lower half of your body) to his pulmonary artery.  This direct connection will make it much easier on his single ventricle.  His first surgery (the Glenn) is when they connected the SVC (superior vena cava – the artery that runs up your neck to your brain) to his pulmonary artery, once the SVC and the IVC are connected directly to the pulmonary arteries he will have complete fontan circulation.  This is the ultimate goal.  This is so far the best possible way for single ventricle kids to live.  But all of this is dependant on one thing.  Your pulmonary arteries.  Fontan circulation requires children to have a lot of blood flow thru the PAs and Logan’s PAs are small.  It is going to be difficult for his body to adjust to the fontan circulation having small pulmonary arteries. 

Logan saw Dr. Patel last Tuesday and had an echo done.  He has grown a lot of collaterals because his pulmonary arteries are small and blood is finding other routes to go down.  He is going to need a cath in the relative near future to coil more of these collaterals off so that all that oxygenated blood is forced back into the PAs and reaches his lungs instead of  just getting lost in collateral viens.  His O2 right now is low 70’s.  He will most likely need a cath in the next 6-8 weeks unless his oxygen levels drop futher sooner.  We will be going to Boston for that cath and more discussions will happen at that time about the timing of the fontan.  We have heard that most likely he will have a very early fontan.  Most kids have this surgery between 2-4 years old.  Logan will have his at the latest 18 months.  This is because his heart will not be able to function well on just the Glenn connection for that long.  If we do the fontan too early we deal with having small pulmonary arteries and the procedure is risky….if we wait to long there could be too much resistance and his pressures in his heart and lungs could be so out of whack that it wouldn’t take to a fontan either.  Timing is going to be everything here….and just like with life, every person with a set up lips has a different opinion.  Dr. Patel is going to see Logan in two weeks from last Tuesday. 

 

I would also like to wish a Happy Father’s Day to daddys around the world and especially the ones dealing with children of special needs.  Logan’s Dad said his biggest fear about having a baby was that he would have one with severe medical problems.  It is so interesting because even though his worst fear came true, I think if you saw the way he cuddles Logans, and watches him sleep you would see that his worst fear has grown into the biggest love of his life.

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Coming home…

Again, these are updates taken off of Facebook where I have been updating the last week….

Feb. 18th

Yesterday Logan got completely unhooked from everything. His pacing wires came out, his A line came out, NG (feeding tube) out, and IJ (a line in the Jugular) came out!!! He is now off all IV medications and is back on his oral meds. The only reason that we couldn’t move to the floor today would be because they are completely out of bed space. Ugh…..I am really hoping they work something out because it’s so loud in the ICU that Logan can never nap for very long.

Feb. 19th

Whoo Hoo!!! We are on the floor. And we have a private room.
Sorry for the really late update…Logan is doing good. He is VERY FUSSY today. I think a large part of that is that he is teething but they also say that his chest is probably still very sore. He just seems restless and like he can’t get comfy. Tomorrow he is scheduled for a sedated echo to make sure that all the repairs are still in good working order.
 
Feb. 20th
 
We got moved in the middle of the night because they needed a private room for a child that has RSV. So we are now in a non-private room. However, looks like we could be getting discharged tomorrow, so I don’t care! Here is Logan getting his sedated echo. Which looked great by the way!
 
OMG!!! We were sprung.
 
Feb. 21st
Going Home In Pictures…
 
 
 
 
 
 
 
 
So we made it home VERY LATE last night. Snow storms all abound. We didn’t get home till 1:30AM I believe. We are all safe and sound although….Logan left the hospital with a little gift….THE STOMACH FLU. Exactly what I was afraid of because it was going around there. Poor baby is just miserable. Vomiting and diahrrea. Can this kid ever catch a break??? Poor Logie 😦 Super happy to be home though.

Open Heart Surgery and then some….

Monday morning first case Logan had his open heart surgery to fix his TAPVR scar tissue issue.  I updated about his progress on Facebook and I am going to cut and paste everything on here to keep it all on one place.  It was quite a week to say the least….

Feb 12th –

The cheif of inpatient cardiology just brought to my attention that Logan’s OHS is going to be on Valentine’s Day. He said there couldn’t be a better day to have it.
 Logan’s fever is gone. He is stil fussy but who wouldn’t be? He has an IV in both feet and one in his hand and his other hand has the pulse ox. We were not able to get discharged for the weekend becuase of our insurance comanpany (Jerks). Apparently our insurance company takes a long time to get approval for admittance and Dr. Del Nido thinks it would be easier to just keep him here, since surgery is 1st case Mon. morning.
 
 
 
Feb. 14th
7:30 AM
They just took Logan back. We have the Cheif of Everything in there. The Chief of sugery, the chief of anthesia, the chief of profusion, ect… They gave him a sedative so he wouldn’t be upset when they took him away from us. He went from giggling to staring blankly in about 20 seconds. Scott said that he recogined that look, but for him it was after a couple hours of drinking. They explained that they might need to do…..see more in comments….
 
Deep Hypothermic Cardiac Arrest. Which is where he is cooled to 6 degrees and taken off bypass completely with no blood circulation at all. Dr. Del Nido may have to do this if there is a lot of blood pooling behind the veins. They said t…hat kids are okay like this for up to 30-60 mn. It is such a scary thought thoug because at that point they are completely dead. They said they have done thousands and Boston does more than anywhere in the world. But it is such a scary thought to me. Overall they say in the scheme of things that this is a fairly low risk surgery. I just feel so less prepared this time and I am much more emotional this morning. Last time he needed surgery he was so sick that we wanted him to get better. It is so much harder when they aren’t looking or acting sick to agree to this. They think it will be 5-6 hours before he is out. It takes much longer to get into his chest this time around because of the scar tissue. The actual repair will only take 20-30 mn. The chief anestesiologist gave me a hug and said he has five children and he can’t imagine what this would be like for us but that he is going to look out for Logan. He said he imagines I have knots in my stomach and I said no they are all in my chest. My heart feels like a rock right now. I will update as soon as I hear anything.
  
10:45 AM 
The chief of anethesthiology just came out and said Logan is now on Bypass. He said that everything is going really well, Logan is tolerating everything beautifully. He said that Dr. Del Nido has an excellant view and right now they don’t think he will need the deep hypothermic arrest. He said he knew I was worried and wanted to come out and talk to us personally. He is a very nice man.
  
 11:22 AM
LOGAN IS OFF BYPASS!!!! He was only on bypass for about 30 mn. That is so awsome. And they didn’t have to use DH arrest. And they didn’t have to remove his thymus. Yay!!!!! I am so happy. His heart is beating again and his own body is moving blood again.
 
11:50 AM
Dr. Del Nido just came out to speak with us. first I have to say he is THE NICEST MAN IN THE WHOLE WORLD. What a gift he is to us Moms. So kind and genuine, it makes all the difference in the world. Turns out there was no scar tissue at all…see more in comments…
 
It is very confusing but it turns out that the confluence of veins was attached to the back of the heart by a little vein (he called it a stump) and that ‘stump’ is what narrowed. There was no scar tissue in it at all. He said that he roo…fed the the top of the vein and confluence completely off and stuck all of it to the back of the heart. He said this is how his heart should be anyway. The other thing he did is go back in and relook at the AV valve. He said that there were some straight forward things they could do to make it even better. He said there is NO VALVE LEAK anymore. He is very confident that Logan’s valve is not going to have any issues until the fontan. I am however wondering if fixing this valve is going to take a longer recovery time. I know they have to really cut into the heart when they are fixing valves. He said that after looking at everything is very glad that we went ahead and did this. He said it was the right thing to do. He said after looking at that narrowing, he was very confident it would have shrunk back down in about a month. Dr. Del Nido is the very best Valentine’s Gift our family could ever ask for.
 
3:08 PM 
We are up in ICU. They are just working on getting him stable…having a little trouble.
 
 
4:13 PM
Things have gone bad…they are having to reoperate. See more in comments….
They have been struggling to get him stable and then his blood pressure dropped to 30. Dr. Del Nido came up to take a look and determined that he needs to reoperate immediately. No time to take him to the ER. He is operating right in his room. He doesn’t know exactly what is wrong. He said he just needs to get in there. They asked us to leave and we are now back in the waiting room to see what happened
 
5:10 PM
Dr. Del Nido just came in to talk with us. They got Logan stable. There was a blood clot around his heart. They have removed it and added another drainage tube. They said we could go in and see him in about 30-45 mn.
 
9:30PM
Its 9:30 pm and Logan has settled out beautifully. He is stable. I have to say though that was the worst thing that has ever happened to me. That is the first time I have felt in my heart that we were really about to lose him. He had an very big blood clot behind his heart and his poor little body just couldn’t compensate with it. more in comments…. 
We knew it was bad when all of his doctors came sprinting into the room. His cardiology ran like a madman into his room. His surgeon was throwing blankets and binkies out of the crib. I was just horrible. Then they asked us to leave. They said they were going to cut him back open right here and that they needed us to wait in the family waiting room. Scott and I looked at each other and we knew this could be it. Dr. Del Nido at that time didn’t know what he was going to find but said he just needed to get in there quickly. Thankfully it was just a clot that needed to be removed. Dr. Del Nido said it looked like old stuff and that he wasn’t bleeding anymore. As soon as the clot was gone his numbers shot back up. He is now perfect. His blood pressure is back up to 80 and his heart rate is down to 145. For those of you that want more technical details you can keep reading in the next comments…for those of you that don’t need that. He is is doing great tonight and they are confident we are know on the right path.His BP is 79 HR 145-150 His lactates were 1.4, his K was 4.4, blood gasses were 72, blood sugar was 140, respiratory rate was 26, off nitro, no pressors, temp is coming back up slowly to 96.5 right now. No Dope, and milrinone was just started.
 
Feb. 15th
8 AM
Logan did fantastic last night! His numbers are right where they want him to be. They turned off the paralytic. They think he is out of the woods. I will update more after rounds. Thank you thank you thank you everyone for all your support, it means EVERYTHING to us. Hugs.
 
10PM
Pedro Del Nido was just in here and he said that Logan looks great. They are going to get the A line out right away (a line that goes straight into the atrium) and they have started to turn down the vent. I just saw him take a couple breaths on his own! He is starting to move around and even squeezed Daddy’s hand.
 
 
 
10PM 
So they took the A line (artial line) out and got the 3 chest tubes out. Other than that he has just had a very very quiet day sleeping. They have begun to wean down on the vent, and on the sedatives. He is starting to move his toes, fingers, and lips, but is way to sedated to actually wake up. They are going to ‘wake’ him up more tomorrow morning and try to get him off the vent in later in the morning depending on how he is. He still needs to get some fluid off of him. All his numbers still look great. Heart rate is 120 BP is 80 RR is 25. His color and profusion is excellant. WBC was 10. He is just sailing now.

 

Feb 16th
8AM 
So today is looking like the day….it is get of the vent day. More in comments… 
My heart broke into two when we walked in early this morning and Logan had his eyes open and was doing the silent vent cry. It is just awful. Today is going to be a hard day for sure. For those of you that don’e know, they have to get Lo…gan off as many narcotics as possible so that he can breath on his own when they take the breathing tube out. So inevitably he is going to be very uncomfortable. This is one of the hardest days. They did and ex-ray and he still has some fluid to get off before we can get the tube out so they went back up on some of the pain medication because it is going to be a little longer than we thought. They are thinking this afternoon instead of this morning. I am not holding my breath because I know not everything goes as planned here. All his numbers still look great. He is still sailing now.
  
2PM
Darn it! I guess today isn’t the day. They want him on the vent for one more day. He has too much pulmonary edema to come off this afternoon. They said he would probably be OK, but they don’t want to risk him not. And they said they don’t want to have to give him CPap. So today is going to be a very quiet day of sleeping.
  
10PM
So Logan is now breathing so well that they are going to re-evalute him for extubation tonight. The vent is on the lowest possible setting and he is actually over breathing for what he needs. He is seriously doing fantastic. I hesitate to say this but I am thinking we could maybe be home mid to late next week. Although, I know anything can and will probably happen. Buts right now its all great news
 
 
Feb. 17th
8 AM
So extubation never happened last night. They determined that his airway is most likely swollen and they wanted him on steroids for 12 hours first. But this morning is it and Dr. Del Nido said he is holding everyone to it.
 
9:30 AM
 
 
 
 
 
 

Open Heart Surgery…again

Well this has been one hell of a week.  Logan did great on the plane, slept the entire time.  We arrived in Boston at 7pm and took Logan to the ER just like we were told to do.  We were under the impression that it was going to be just checking his pulse ox and respiratory rate and based on that we would either get admitted or be able to go back to the hotel with him.  Wow, was that not what happened. 

To be honest, no one had a clue what was going on.  We were in the ER for over 4 hours before anyone from cardiology even came down to talk with us.  His idea was that we get all the pre-cath blood work done while we are in the ER.   That seems logical although it was now 12AM and I wanted Logan to actually be able to sleep before his big procedure.  We told them we wanted to just take him back to the hotel and check in early in the morning.  Then someone comes in and says that we can’t leave because his Potassium is at a critically high level and that if we take him back to the hotel he might arrest and die.  Ugh….

This was a ridiculous statement to make to us for a number of reasons.  1. being that this is a kid that is laying here smiling and happy.  2. His kidney function has always been perfect. 3. His heart function is good 4. His EKG was normal 5.  He wasn’t dehydrated 6. there was absolutely no reason to believe that this number wasn’t a lab error. We told them we would take our chances and that we were going back to the hotel.  At 3AM I told them that this was it, this was my bottom line, that Logan was having a major procedure in the morning and that I was not going to keep him up any longer.  We got him dressed to leave and someone comes running down and says ‘wait we have a room for you now.’  So we were brought up to, good ole’ 8 EAST.  I know there are many of you reading this right now that are very familiar with 8 EAST.  It was very surreal being back. 

The next morning Logan had his cath.  We were very nervous because in the back of my head I kept thinking, ‘what if they do find scar tissue in the individual pulmonary veins”  if they do this is a scenario that would very likely lead to the double lung and heart transplant.  We met with the Dr. doing the cath before hand and he said he was very confident in his ability to  get Logan fixed up, unless the scar tissue was in the individual pulmonary veins.  We got updates every hour on how the cath was going.  It was long.  I believe it was 4-5 hours long.  The doc (Dr. Locke) said this was about as hard of a cath as you can do but that he was very fast. 

It turned out Logan handled the Cath wonderfully.  He did better than EVERYONE expected.  They had told us to expect him to be intubated overnight and in the ICU over night.  Not the case, Logan was extubated right away and after 2 hours in the recovery room we headed back on over to 8 EAST.  Dr. Lock came and talked with us.  He is a very nice man, he walked right in and said ‘Hey, did you hear?  NO bad news!”  He said this was very manageable, that Logan would need a couple more caths and an even earlier fontan, but that things looked good.  We were soooo relieved.  Everyone said that most likely Logan would be able to go home tomorrow.  That night Logan had a fever of 101.5 and was very fussy.  They said that was par for the course because during the cath he also had over 20 metal coils put in him and it is standard to have an inflammatory response to that.  Other than that though he really did great.  And check out his oxygen saturation after the cath….

That middle number is his oxygen sats.  He came in at 66-69 and after the cath his 80-84.  We couldn’t be happier.  We got all the discharge paper and got Logan dressed when a nurse came in and said that Dr. Del Nido said he would like to speak with us before we leave.  We just thought he wanted to stop in and say HI.  Oh no, this was not the case at all. 

Dr. Del Nido told us that although the cath went well it didn’t open up the confluence nearly as well as he would have liked.  He said that the diameter was increased from 4.5 to 6 but he wants it 10 cm or bigger.  The cath brought his Glenn pressures down from 22 to 16 but that 16 is still high.  He said he would like to go ahead and surgically make this confluence bigger to bring the pressures down even further.  He said in the long run it will give us more time to hold off on the fontan and we will have less problems with fontan.  He is very worried about all the collaterals that Logan has.  He thinks with the pressures this high they are just going to come back.  That this cath result won’t last very long.  And if we do a wait and see then will have to bring Logan back after more collaterals have grown, pressures are back up, and have to redo the cath all over again before surgery.  He thinks it would be best to do the repair the right way and to do it now when Logan is in really good shape. 

I am not going to lie.  I felt kicked in the stomach.  I also believe my whole body went immediately into shock.  We were literally about to walk out the door to go home.  Talk about a paradigm switch.  I had a long conversation with Dr. Patel on the phone about whether to ‘wait and see’ or to just get this corrected the right way, right now, and he agreed with Dr. Del Nido that we should get it done now.  He thinks that if Dr. Del Nido can confidently and fairly easily get Logan’s pressures a lot lower than we should do it.  And he didn’t think bringing Logan home and then bringing him back to have to go thru all this again was the right thing to do. 

Dr. Del Nido thinks that it will be only 4-5 days in the ICU and another 4-5 on the floor.  I take this with a HUGE grain of salt because nothing ever goes that way with Logan, but I do agree that this surgery is going to be nothing like the last one.  The last one involved multiple repairs and significantly changing the hemodynamic (blood flow) this is just putting a patch in the confluence and widening it up.  Never the less it is Open Heart Surgery and I am very scared. 

Surgery for his TAPVR re-repair is Monday at 7:30AM.  He is first case and this surgery shouldn’t take as long as the last one. 

It is also Feb. 14th Valentine’s Day.  I guess there could’t be a better day for heart surgery.