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.
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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.

A Double Lung and Heart Transplant???

So in my previous post I wrote that I was very nervous for our appointment at the cleveland clinic and that I couldn’t put my finger on the exact reason why.  Well, for whatever reason my instinct was right and this appointment was anything but what we were expecting. 

When the doctor came in he talked about Logan’s condition and told us that many of these kids need a heart and lung transplant.  He said they can put it off for a long time but eventually we will most likely be at that point.  I was shocked, scared, and be honest a little skeptical.  I asked the doctor some questions and based on his answer I began to question whether he really even understood Logan’s anatomy.  He did say he was a little confused as to what Dr. Del Nido did during surgery so I set up a phone call with him to speak with Dr. Del Nido personally. 

Never-the-less after our conversation I was still not quite convinced that this doctor fully understood Logan’s condition.  Maybe it was unfair to expect him to pick up so much information in such a short period of time (Logan is, after all, very complicated.)  Immediately, after we got done with this appointment I called Dr. Patel and asked him to tell me this wasn’t true, that my gut was right and that this doctor didn’t understand Logan’s condition at all.  Dr. Patel said he wanted to re-look at the post op report and to make sure he didn’t miss anything before he could give me a definitive answer (he is extremely meticulous, I don’t believe this was really necessary) and when he called back (which was 2 of the longest hours of my life) he said that he did not believe he missed anything and that this is not a condition that would lead to a heart and lung transplant.  Big Sigh………..

Needless to say we feel much more comfortable going back to the doctors at Boston.  I think that although it would have been very conveniant to do this close to home, the learning curve it probably too big to bring new players right now.  After two days of continuous emails we have all the details worked out and we are headed to Boston today at 5pm.  Our plane gets in around 8pm and then they would like us to take Logan immediately to the Emergency Room to be evaluated.  I think that this is an over reaction, I think we would have been fine to take him to the hotel and check him in the morning, but this is not a battle I want to fight.  A doctor that we are very familiar with is going to meet us in the ER and evaluate him. 

Dr.Del Nido also has a surgery scheduled for 7 days out in case the cath doesn’t work.  The goal of the cath is to widen the confluence of pulmonary veins so the adequate blood flow can return from the lungs to the heart easily.  Right now there is some scar tissue that is blocking the flow.  If a balloon doesn’t do the trick then Dr. Del Nido said that he can do a surgical repair with very good results.  We are just going to cross our fingers that this darn cath is going to work.  Once again I will be updating Logan’s Facebook page more frequently than this wordpress site so if you would like to join his facebook page please feel free.  Heterotaxysyndrome-Logan Spyker

Sunday Night.

I am a little nervous for our appointment at the cleveland clinic tomorrow.  I can’t even put my finger on what I am so nervous about.  I guess you always have this fear that they are going to find something.  It will most likely be a long day.  We have a radiology appointment first (chest x-ray) and then we are going to have an EKG, possibly and echocardiogram, and then we will meet with Dr. Larry Latson.  I also have all my faith in this man to save Logan from another open heart surgery.  I am really hoping nothing changes once the whole exam is done. 

Logan has been a little cranky, I am not sure if it’s because of his progressing cyanosis or if he is teething.  Everything has started going in the mouth but no major drooling has started.  He does have labored breathing that is getting worse.  Even in the last week his breath has gotten more labored.  Not really sure if this makes him uncomfortable or not.  I would hate to feel out of breath all the time, but maybe he doesn’t know the difference.

We  found a food HE LOVES!!!

Who would ever have thought? Sweet potato, corn, and apple? Anyway, he ate half of one of these containers in one feeding!  This is to date the most he has ever eaten at one time.  He also later this evening drank 4 oz. of milk.  I know that doesn’t sound like much but for him this is a lot.  Usually he only drinks 2-3 oz.  He must be growing! That would be great since he still fits into some of newborn clothes. 

So see how Logan’s milk looks pink? That is not bad lighting his milk is pink.  Its filled with medicine.  In this particular bottle he has 5 medicines.  Sildenafil (Viagra), Captopril, Penicillin (for the asplenia), Lasix, and aspirin.  They are compounded with some flavoring which is why its pink.  He doesn’t seem to mind it at all.  And this way he doesn’t get the stress of having syringes of medicines forced into his mouth.

 

This was one of THE BIG KEYS to helping get him over his oral aversions.   Forcing syringe and syringe of medicines in his mouth made he him not want to eat at all.  For those of you that don’t have children with congenital heart disease, feeding is one of the biggest challenges these kids have.  We have been very fortunate so far.  He breastfed for 6 months and we have had no feeding tubes (other than at birth for a couple of weeks).  This is not the norm.  Typically feeding becomes a very big issue and many cardiac kids have to have surgically placed G-tubes into their stomachs for feedings.  I am so thankful that we have a doctor that supports our trying our darndest to do this the natural way. 

As soon as I get any news I will post either on here or on Logan’s facebook page (usually I post on there quickly and with less detail when I have time.)

The Cleveland Clinic

Dr. Patel saw Logan on Tues. and talked with Logan’s cardiologist at Boston on Tues.  Actually Dr. Marx from Boston called at 2pm the exact same time Logan’s app. was.  What are the odd’s of that?

 

(Scott getting Logan into his car seat for our appointment)

 Anyway, the doctors at Boston concluded that they would like a cath done immediately and that they would really like to hold off surgery if possibly.  They would like to first try to balloon open the confluence before Dr. Del Nido trys to re-operate on it.  They also said that Logan needs to be in isolation

(Akron Children’s Hospital)

because if the he gets sick right now, he will really get into trouble.  He has no buffer right now. 

We have decided to have the cardiac cath done locally at the Cleveland Clinic.  We have decided that so far Dr. Patel has taken the best care of Logan and we would like to keep him as close to him as possible.  He has the huge advantage of knowing Logan really well, and has the same goal as our family  does, to get Logan in and out of the hospital as fast as possible.  Dr. Patel knows and has relationships with the pediatric cardiologists in cleveland and will be able to have more input than if he went back to Boston.  We will always go back to Boston for any open heart surgeries.  Dr. Del Nido is the best and I wouldn’t trade him FOR ANYTHING.  Another factor that is telling us to go have this procedure at the Cleveland Clinic is that his GI doctors are there and the pediatric general surgeon that we consulted with, a while back, regarding his malrotation is also at the Cleveland Clinic. I don’t want to have to argue with anyone regarding having his malrotation surgery (The Ladd’s procedure) done.  Some centers are very adamant on getting this surgery done but in what I have been witnessing over the last year, it is a very dangerous procedure, that we are not comfortable doing prophylactically.  We will have it done if or when he actually has an obstructed bowel. 

So we are meeting with Dr. Larry Latson at the Cleveland Clinic on Mon.  He is going to have a chest ex-ray, and EKG, and maybe an another echo done.  Dr. Patel did one on Tues and if all the pictures are there Dr. Latson won’t do another one.  Based on the exam that day Dr. Latson will either do the Cath on Wed. or wait until the following week.  I have a feeling he won’t want to wait. 

Here are some pictures that Scott took of Logan and I, you can get a very good idea of how cyanotic (blue) he is right now.

Hahahahhah….in this picture you can see how all the hair on the back of his head fell out.  He looks so silly. 

And then lastly, I just want to remind everyone that even though we are all so worried about Logan, he IS SO HAPPY.  HE COULDN”T BE A HAPPIER BABY.  He definitely went thru a period after surgery when he was nervous, but he’s over that now and just laughs all the time.

 

He loves Mommy’s funny faces and funny noises!!!