New Year, New Joey

Yesterday marks two weeks since Joey's first cardiac arrest. Since then Joey has made good progress. The doctors are very pleased with how he is doing and where he is at. The next few weeks will be working to get him back to full recovery prior to the arrest. We have been telling Joey that it is a new year and time for a new you! The plan for 2015 is to get Joey home and healthy.





Joey has almost shrunk back down to his normal self.  He is still holding onto some fluid, but looks significantly better. He has lost over two liters of fluid in the past two weeks. It is unbelievable how much was in him! His kidneys are coming back to life and he is peeing more and more each day. This has helped to get a lot of extra fluid off.

After being so puffy Joey is very stiff and weak. Also, after the arrest he was give a paralytic, which basically paralyzed him. His condition was so critical at the time that they did not want him moving. This was imperative as the doctors did not want him exerting any energy or increasing his blood pressure.  Due to this, Joey has been doing physical therapy to help build muscle and get moving again.  Joey has been wiggling his hands and feet more and more each day. Eric has played a big part in this as he has been exercising Joey daily.

Joey's lungs were put through a lot of stress as well. After surgery they were weak and got flooded with fluid. It takes some time for them to get strong. Joey's lungs are looking better each day and hopefully we can get him extubated again soon.

We are slowly taking baby steps forward.  Joey has proven that he does not like big changes and we are happy for small wins each day.

Joey is looking forward to getting strong and well in 2015. For now he is trying to decide which nurse he wants to kiss at midnight.

Happy New Year everyone!

Merry Christmas to me

Joey is still really sick and has a long way to go. Everyday he is getting stronger and stronger as he works to recover. The nurses felt that he has reached a more stable point and I was finally able to hold him again today. It was a wonderful late Christmas gift! We spent all day making up for lost time and I was thrilled to have him in my arms again.

A very PSHU Christmas

Joey has been in the PSHU (pediatric surgical heart  unit) for awhile and many of the nurses have grown attached to him.  They felt bad for all that he has gone through and that he will be spending Christmas  in the hospital.  Yesterday, the nursing staff surprised us and brought a little Christmas  cheer to our family by decorating Joey's  room.  His drab hospital room was transformed into a cozy place.  This was a small thoughtful gesture that makes spending the holidays in the hospital  not so bad.   Joey has a snowman blankey, lights above  his bed, a fireplace, Christmas music playing, paper and bows decorating the walls, a stocking, and mini tree. We feel blessed to have such a caring team taking care of our baby.  I even heard that the surgeon pitched in and was cutting wrapping paper for his room with a scapula.

Joey had a good weekend.  The plan for him is recovery and rest. Last week his body went through a lot of stress and shock.  He is going to need lots of time to recover.  He is a really sick baby and only time will make him better.  We are praying for no infections and that he continues to grow stronger everyday.

The Week we Almost Lost Joey

It was a difficult week and we were on the verge of losing Joey. We have been on this downhill roller-coaster ride of emotions that have left us feeling sick to our stomachs.

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.

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. 

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.

Request

Religious or not please send good vibes our way today. Little Joey is struggling. He cardic arrested  twice in 24 hours and have a very serious blood clot. We are praying that he pulls through this with no other complications.

Updates

It has been a busy 2 weeks! Joey has had some difficulties and is working on getting back on track. Here is an update as to what has been going:

Thanksgiving:
We had a great day with Joey on Thanksgiving. When we came in on that morning we found that our little guy had been extubated and walked into the sound of his cries. It was wonderful to hear his voice again and see his little face. We spent the day giving him lots of cuddles and feeling very thankful for all of the progress that he had made. Things has been moving along very quickly and Joey was making good progress. Unfortunately, the 2 weeks that followed came with a few bumps in the road.

Set Backs:
Joey had several complications the other week.  He was feverish, had some fluid around his lungs, and had some inflammation in his intestines.  The doctors were trying to rule out all causes and stopped his feedings for several days.  They were unsure if it was an issue of infection or a result of malrotaton. After a few days his condition improved and they started the feeds back up. All was going well and Joey seemed to be tolerating the full feeds until we got an unexpected call at 2:30 am. Some of Joey's numbers had spiked, which was a cause for concern.  After running some tests, the doctors found a large amount of fluid on the right side of his chest and needed permission to put a chest tube in for drainage. It took the doctors a day to figure out why his numbers had suddenly spiked and where the fluid had come from.

Joey was diagnosed with chylothorax, which is a condition that is often found to be a complication after heart surgery. Chylothorax is a temporary condition where the body can not absorb fat from the milk. The doctors suspect that this may have been the cause for the issues that Joey had earlier in the week, as it had a direct correlation to feedings.  Joey has been put on a "fat free" diet where he is getting a special formula. Shortly he will be giving a skim version of my breast milk. The condition should improve on its own and Joey should be able to have regular breast milk in 6-8 weeks. 

Joey had been doing great all of this week and the doctors had weened him off a lot of his meds and moved him down to a lower level of breathing assistance. Something happened on Wednesday afternoon and Joey had another set back. There was a change in his numbers, which again was a cause for concern. The doctors are not sure why this happened yet. They think he may have aspirated, could have a possible infection, or it may have been a cardiac issue. The doctors are proceeding with caution and working to find the cause. For now they have stop his feeding and put him back on multiple medicines until they feel that he has improved and is more stable. With all of these things happening we sat down with our team of doctors to discuss Joeys plan for care.

Plan for Care:
The objective is to keep helping Joey do things on his own, and nourish him so that he grows.  A big part of the 2nd surgery is that he is supposed be bigger.   There is a band on the Pulmonary Artery going to the heart to restrict blood flow to an extent until the 2nd surgery is done.  Joey's respiratory rate has been high while recovering, and doctors believe that this may pose a problem with his growth because he's working so hard to breathe.   The PA band was applied loosely to allow him to grow into it.  What may need to happen, is another minor surgery to adjust the band.  For now, they don't plan to do this, but it's definitely not out of the realm of possibilities.  Keeping him comfortable is also an ongoing task.  This is still a newborn baby that needs his precious sleep.  He's always getting treatment which keeps hm up, and their also trying to make it so that he's not in pain.  That's been a course for debate as we've seen him really upset, but he's also been completely content at times.   The plan for care is a very fickle subject because I feel that the minute we're moving into a pattern, something throws a wrench into the plan.   We're going to keep pushing forward, but growth and comfort are two consistencies within the plan.  How we get there?  That's a day-to-day thing.


Meeting Big Brother:
Joey was doing well enough over the weekend that the nurses allowed for big brother to come visit. Jonathan was really excited to meet his little brother. We have been showing him lots of pictures and letting them video chat.  Jonathan walked in and the first thing he said was "Baby Joey in the crib". The first ten minutes went well and Jonathan got to say hi, give him his pacifier, and tell him he loved him. Unfortunately after that, he was over it. Being a toddler his attention span is short, so we struggled to get a few pictures. In the end I think we got a few good ones. We were happy to have the four of us together, even if it was for a short time.

Life at Home:
Eric went back to work the week after Thanksgiving.  Fortunately, he has been able to work from home until Joey is able to come home.  Joey is still in intensive care and its important that Eric be close in the event he would need to run over to the hospital.  We have been trading shifts at the hospital every day.  I am there in the morning and afternoon and Eric comes over in the evening. It has been draining being at the hospital everyday. I miss seeing Eric and Eric misses seeing Jonathan. We have kept Jonathan in day care, which has kept some routine to his schedule and allowed for me to be with Joey during the day. It has been difficult being there everyday and has been hard to keep up things around the house.  Our home has become a bit dirtier then I like. As I am usually pretty meticulous about having a clean home, but given our current situation, clean floors just don't seem to be that important these days.

In addition to Joey having a rough week, things were not any less hetic at home.  I was notified the other week that a child in Jonathan's class had lice!  Gross! I freaked out and unpleasantly checked his hair, shampooed him with the treatment, and washed all of his stuff. Luckily, Jonathan did not have it, but I have been itching all week thinking about it!  Then a few days after I had washed and clean his bedding from the lice scare Jonathan ate something that did not agree with him. He threw  up all over his bed in the middle of the night.  I got his stuff changed out and got him back to bed. Only to wake up to find it had just come out of the other end of him, which prompted for more laundry.  On top of this, we spent a few hours at urgent care with Jonathan for an injury endured to his elbow. Jonathan was playing too rough and dislocated his elbow.  Luckily it was a quick fix to pop back in place and he was fine.

Needless to say, after many set backs with Joey and a rough week at home, the nerves are being extremely tested.  Joey has had a rough two weeks and it seems like he can not catch a break.  Things had been moving along so well and we got ahead of ourselves.  When it seemed that Joey would have a quick recovery, we have to remember that Joey has a complex heart, and it will take time for him to recover.  The reality of our situation is: it really sucks.  Words can't express the feeling Eric and I get when we're seeing the level of discomfort that Joey is in, and we can't really do anything to make him feel better.   All we can do is let him know we're there and let him fight through it.  I feel cheated that we could not have a "normal" experience and enjoying time at home with him.  It is difficult not having a time line and being unable to plan for the future.  We are worried about our careers, our finances, and Joey's future.  I know that Eric and I will work through things as they come, and more importantly, we will persevere.  The goal is to get Joey healthy and we hope that next year we will be celebrating the holidays at home as a family with a healthy baby.

(Joey and his nurse did an art project together for Mom and Dad)