Joey had been struggling the previous week. Over the course of two weeks he had intermittent fevers, issues with clotting lines, trouble breathing, deterioration to his lung condition, inflation, and high lactic numbers (which mean the body is struggling). Due to no improvements in his condition the doctors decided to intubate him a to try to let his body rest in hopes that his condition would improve.
This week was about getting Joey stronger and running multiple tests to see what was going on. The doctors and us were becoming frustrated as they had been ordering more and more tests and everything was coming back as negative. It was good that everything was normal, but frustrating because something was clearly going on and Joey could not be treated to become better until we knew what that was.
The doctors were trying to rule everything out and ordered a cardiac cathizideration to be done on Tuesday. The cath is a procedure where they go through a vein in the leg up into the hear and insert dye. They are able to take pictures and find out exactly what is going on with the cardiac function. The doctors wanted to make sure that there was no obstruction to the pulmonary veins, which were repaired previously. This is typically, a straight forward procedure. When Joey was gone longer then expected, I started to worry. I finally got a call from the cath team to let me know that the ran into an issue. The good news was that Joey's heart looked great and there was no obstruction to the veins. They incidentally found a very large blot clot in Joey's aorta.
A clot in the lower aorta is a very rare and serious issue. This is something that is hardly ever seen. Our surgeon said he has not seen anything like this is 20 years. The clot was in the lower part of the aortic artery and blocking blood flow to both legs.(Illiac Ateries) Prior to this finding, Joey's feet had been feeling cool, but that was thought to be due to his cardiac output and issues breathing. The clot quickly showed its severity during the cath, showing that there was obstructed blood flow to the right and left legs. After Joey returned from his procedure, his left foot was discolored due to lack venous return because the doctors had left the catheter in Joey's vein exiting the leg. There was still some flow getting through to the leg, but not enough. There was concern that Joey may lose that leg or both if we could not get rid of the clot. The vascular surgeon was called and our only hope was that the blood clot was subside with very strong medicine or it would have to be attempted to be removed surgically. The vascular surgeon said that rarely do they ever operate on infants and if they do the outcome is usually not good as there would be high risk of damage to the artery and amputation would be likely!
My instant feeling of shock and confusion was expected. How did we go from a cardiac issue to a discussion of my kid losing his legs? All we could do was pray that the drugs would break up the clot over night. The legs were to be monitor throughout the evening and if they looked worse overnight and unimproved in the morning surgery would be need right away in hopes of saving his limbs.
My instant feeling of shock and confusion was expected. How did we go from a cardiac issue to a discussion of my kid losing his legs? All we could do was pray that the drugs would break up the clot over night. The legs were to be monitor throughout the evening and if they looked worse overnight and unimproved in the morning surgery would be need right away in hopes of saving his limbs.
In addition to this news immediately upon his return, the situation greatly intensified. The doctors where working to get Joey stabilized in his room when he suddenly went into cardiac arrest. Luckily, the main team of doctors were all in the room and they were able to work fast. All Eric and I could do was watch as more more people flooded the room and chest compression and defibrillator shocks where preformed I felt my whole world crashing down around me. All I could do was watch and hope this was not the end. The few minutes that it took to revive and stabilize him felt like a eternity. The doctors think that the arrest was caused by a drop in protein. They had been giving Joey blood after the procedure and all of the different meds that they where pumping through him set him over the edge. With all of the different things that Joey is on, the doctors really have to find a balance for everything.
Cardiac arrest is very stressful on the body. There is no telling what impact it has on him fully. After the arrest Joey swelled to three times his size from the amount of fluid that was pumped through him in order to regulate his blood pressure and keep him stable. When the body is in shock, the body's fluid tends to migrate to the body's tissue, and that's the need for the heavy fluid assistance from the medical staff. He swelled to the to the point we thought his skin couldn't handle anymore, and it was an extremely sad sigh to see. He did not look him himself and after all he had been through broke our hearts.
After the arrest there was no way that Joey would be strong enough to forgo a surgery if the clot did not resolve. We would need him to remain stable throughout the night and hope the aggressive clot dissolving medicine worked. That evening Joey had a "calm" night and his legs seemed to be getting better, which was a good sign. Unfortunately, disaster struck again when Joey suddenly had another cardiac arrest at 6am the next day. I again watched a team of doctors storm into our room and fight to keep him alive. I felt helpless and numb as I watched the doctors do chest compressions. We were asked to leave he room as the ECMO (heart and lung life support machine) was brought in.
Eric and I could not believe the turn of events in 24 hours. We helplessly had to sit in the waiting room and wait for an update on our son. We had no idea if he was alive or not and/or being supported by a machine. Finally, someone came to tell us that Joey had stabilized and they did not need to put him on the life support. This was good new to hear, but Joey was now in very critical condition. He was extremely ill and it was an hour by hour situation for him. The doctors told us that if he were to arrest again they would most likely need to put him on life support. If this were to happen there was a good probability that he may not be able to come off. If ECMO was to be need this would have to be a decision that Eric and I would need to make. The doctors were essentially putting the decision of Joeys life in our hands if arrest happened again.
The decision was easy for Eric and I to make. If something were going to happen to Joey we want to know that we had done all we could for him. I hope that Joey remains stable and we never had to reach this point or discuss it again.
Due to second cardiac arrest and no signs of decline from the legs, the doctors decided that he needed a day of rest before anything could be done. They would continue with the clot dissolving medicine, watch his legs, give him rest, and work to keep him stable. When the cardiac cath was done there was a wire that was put through his heart. The wire was causing some extra leakiness around the heart which was putting stress on it. They believe that this may have been a factor the played into the second cardiac arrest. The goal for the next day was to get this wire out before it would put any additional stress on the heart.
The question was if they going to run another wire through the heart to confirm if the clot was gone or not, which may put more strain on the heart and possibly of set a third cardiac arrest that Joey may not be able to recover from. This procedure would be the only certain way to know if the clot was gone or not. Our other option was to not put him through this and just continue with the medication. The concern with this was that if we continued with the medicine when it was not needed it could cause brain bleeding. Either way you slice it neither option was ideal. The best way to go was to move forward with cath, hope that he tolerated it, and get a definitive answer on the clot.
Eric and I were scared and worried when we left the room for the procedure to being. This type of procedure is stressful on a healthy child and it was being done on Joey who is very sick. We hoped that he could tolerate it again. We anxiously sat in the waiting room and prayed for a good outcome.
Good news arrived quickly! The doctors informed us that the clot was gone, the wire that had been in his heart was removed, Joey did great, and he was stable. Now that the wire was gone it should give him stronger heart function, which will help him recover. The artery to the left leg was completely open and had wonderful flow to that leg. Surprisingly the artery to the right leg had not opened, but the right leg was getting adequate blood flow. The body has formed other means to get blood to that leg and now neither leg has been comprised! Joey would keep his legs! I hugged the nurse when she told us! We need this win more then ever!
The doctors think that this clot had had been brewing in Joey's leg for some time. About three weeks ago he had a line in his right leg that stopped working and the line was removed. The doctors suspect that this line became comprised because of the clot. The clot grew with time and had started to cause a lot of issues for Joey. The body does surprising things and Joey grew veins that allowed blood to flow to his legs.
Cardiac arrest is very stressful on the body. There is no telling what impact it has on him fully. After the arrest Joey swelled to three times his size from the amount of fluid that was pumped through him in order to regulate his blood pressure and keep him stable. When the body is in shock, the body's fluid tends to migrate to the body's tissue, and that's the need for the heavy fluid assistance from the medical staff. He swelled to the to the point we thought his skin couldn't handle anymore, and it was an extremely sad sigh to see. He did not look him himself and after all he had been through broke our hearts.
After the arrest there was no way that Joey would be strong enough to forgo a surgery if the clot did not resolve. We would need him to remain stable throughout the night and hope the aggressive clot dissolving medicine worked. That evening Joey had a "calm" night and his legs seemed to be getting better, which was a good sign. Unfortunately, disaster struck again when Joey suddenly had another cardiac arrest at 6am the next day. I again watched a team of doctors storm into our room and fight to keep him alive. I felt helpless and numb as I watched the doctors do chest compressions. We were asked to leave he room as the ECMO (heart and lung life support machine) was brought in.
Eric and I could not believe the turn of events in 24 hours. We helplessly had to sit in the waiting room and wait for an update on our son. We had no idea if he was alive or not and/or being supported by a machine. Finally, someone came to tell us that Joey had stabilized and they did not need to put him on the life support. This was good new to hear, but Joey was now in very critical condition. He was extremely ill and it was an hour by hour situation for him. The doctors told us that if he were to arrest again they would most likely need to put him on life support. If this were to happen there was a good probability that he may not be able to come off. If ECMO was to be need this would have to be a decision that Eric and I would need to make. The doctors were essentially putting the decision of Joeys life in our hands if arrest happened again.
The decision was easy for Eric and I to make. If something were going to happen to Joey we want to know that we had done all we could for him. I hope that Joey remains stable and we never had to reach this point or discuss it again.
Due to second cardiac arrest and no signs of decline from the legs, the doctors decided that he needed a day of rest before anything could be done. They would continue with the clot dissolving medicine, watch his legs, give him rest, and work to keep him stable. When the cardiac cath was done there was a wire that was put through his heart. The wire was causing some extra leakiness around the heart which was putting stress on it. They believe that this may have been a factor the played into the second cardiac arrest. The goal for the next day was to get this wire out before it would put any additional stress on the heart.
The question was if they going to run another wire through the heart to confirm if the clot was gone or not, which may put more strain on the heart and possibly of set a third cardiac arrest that Joey may not be able to recover from. This procedure would be the only certain way to know if the clot was gone or not. Our other option was to not put him through this and just continue with the medication. The concern with this was that if we continued with the medicine when it was not needed it could cause brain bleeding. Either way you slice it neither option was ideal. The best way to go was to move forward with cath, hope that he tolerated it, and get a definitive answer on the clot.
Eric and I were scared and worried when we left the room for the procedure to being. This type of procedure is stressful on a healthy child and it was being done on Joey who is very sick. We hoped that he could tolerate it again. We anxiously sat in the waiting room and prayed for a good outcome.
Good news arrived quickly! The doctors informed us that the clot was gone, the wire that had been in his heart was removed, Joey did great, and he was stable. Now that the wire was gone it should give him stronger heart function, which will help him recover. The artery to the left leg was completely open and had wonderful flow to that leg. Surprisingly the artery to the right leg had not opened, but the right leg was getting adequate blood flow. The body has formed other means to get blood to that leg and now neither leg has been comprised! Joey would keep his legs! I hugged the nurse when she told us! We need this win more then ever!
The doctors think that this clot had had been brewing in Joey's leg for some time. About three weeks ago he had a line in his right leg that stopped working and the line was removed. The doctors suspect that this line became comprised because of the clot. The clot grew with time and had started to cause a lot of issues for Joey. The body does surprising things and Joey grew veins that allowed blood to flow to his legs.
In summary this is what we faced this week:
- I was told that my kid could could possibly lose both his legs
- I watched my son cardiac arrest twice and be revived by a defibrillator
- I have watched my child swell to almost three times his size due to excess fluid
- I had a discussion on the possibility of Joey needing life support and not being able to be taken off it.
- I has to make a decision if I wanted Joey to undergo a procedure that would put him at risk for a possible third cardiac arrest, or opt for not having it done and risk brain bleeding from the clot medication.
I feel like I have been to hell and back. This clot was a tremendous set back for Joey and we will not be leaving the hospital any time soon. It is going to take Joey a long time to recover and heal. The doctors believe the clot had probably been there for several weeks and grown over time. The clot is the mostly likely culprit for Joeys set backs in the previous weeks as well
Sometimes you need to hit rock bottom before things can get better and I think we are there. Now that the clot is resolved we can work on getting Joey better. The first step is to relive some fluid from him. Joey suffered some damage to his kidneys from the arrest. He is peeing some, which is good news, but it will take some time for them to fully recover. For the time it appears that all of his other organs remained intact and are damage free. Things are starting to look up for Joey. The doctor told us today that he thought Joey had a 50/50 chance of making it out of here the past two days. It was a really scary few days.
Joey's condition is very critical still and he is very ill. Recovery is going to be a long process. We are happy that Joey fought through this all and hopefully we can get him back on track.
Eric and I relieved some stress today with a shared milkshake and well needed nap.
Please keep praying for baby Joey as he has a long way to go.
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