Joey's Rally, Update

Now that Sunday/Monday are a few days past, I've really had a chance to reflect on the experience from earlier this week.  Joey has miraculously pulled through this week.  We have been shocked time and time again by his resilience.  I think that the power of prayer and a mothers touch are the reasons why he is still with us today.

Joey was stable day on Sunday.  On Sunday night, the hospital called and said that we should come in.  When they call and tell you this, you know things are not good.  Joey is in ICU and things can change from hour to hour.  We had just checked on Joey two hours before and he was fine.  Quickly a good day became a bad one. 

I am not trying sound dramatic, but the situation was very serious.  I know that the past month has been post after post of intense events, but this is what we deal with on a day-to-day and week-to-week basis.  This situation was a bit different then the rest.  While the other procedures were risky, and we had to have difficult discussions, it was still something that was happening that was going to help Joey.  This time, we were speaking to the doctors and they were telling us that we had no other options.  Joeys numbers had not been improving and his heart rate had dropped to a dangerously low place. These were signs that the sepsis, infection, was not under control.  The impression that we got from the team was that nothing could be done to help him.  Anything that could, would only extend his life for a short amount of time.  Based on this, we made the decision to not escalate care.  This means, that no other life saving measures would be taken.  We were not going to pull the rug out from under him completely, and stop all care.  We were going to leave things in Gods hands and let Joey figure it out.  This was different than before because we were expecting death as a reality, and not just something that may happen.

Sunday night was filled with tears and lots of snuggles with Joey.  It's really hard to describe the feeling of holding your baby and knowing that any minute, he may be breathing his last breath.  It was truly the most heartbreaking experience.  We didn't think he would live to see Monday morning.  We put a lot of faith in Joey, prayed really hard, and our prayers were heard.

Joey is doing better than Sunday, but he is still very sick.  He is still septic, he still is puffy from fluid, his kidney are hurt, his skin is discolored, he is very weak, and his bowel is injured.  The doctors are trying to balance all that is going on with Joey to make him better.  This is a huge balancing act.  As one thing is done to help him, it hurts somthing else, and it just seems like a big vicious cycle.

The most recent example of this is Joey had to have more bowel removed yesterday.  When you are very sick, the body tries to protect the most vital organs like the heart and brain.  Due to this other areas that are not as significant importance, receive less blood flow, like the kidneys and stomach. Yesterday, more sick bowel was seen in Joeys belly and the surgeon went and removed it.  That makes GI surgery number three for Joey.

 A reason why the bowel may have gotten sick again was due to poor profusion to the gut.  To increase profusion to the gut and other areas Joey needs fluid.  All of the fluid puts stress on the body and increases pressure on the lungs and decreases profusion to the gut.  Joey is having trouble losing fluid because his kidneys are damaged.  The kidneys help remove waste from his body and fight the infection.  He is having trouble fighting the infection due the kidney disease.  The infection puts more stress on the kidneys as well.  To get rid of the infection, Joey needs antibiotics, but that damages the kidneys.  Its is a difficult task to manage all the is going on with Joey and he has not ever been able to recover from one event until the next one happens.

Joey has had so many complications and they keep happening closer and closer together.  It is a miracle that he is still with us today.  It is day-to-day and hour-by-hour with Joey.  It is encouraging that we have seen some improvements, but he is still in a very bad place.  Please say prayers that Joey's kidneys recover quickly, he is able to get fluid off his body, and that he can overcome the sepsis.  

Final Hours

Joeys journey may be coming to its final chapter. We have reached a point where the medical team can only do so much for Joey. Joeys little body has been through major events in a short amount of time and many things are working against him. He is showing signs that he is fighting a losing battle and chances of survival are extremely slim.

We carefully made our way over to the hospital in the thick of blizzard yesterday. There was extreme concern that he would not make it through the night due to a significant decrease in blood pressure. I held Joey all night and slept with him in my arms. Joey looked peaceful and happy. I loved feeling his hand squeezing mine and having his body next to me. Every beep of the monitor had us on the edge of our seats wondering of it was a sign that we were getting closer to saying good bye.

Joey made it through the night and his blood pressure came up without any intervention. Joey is fighting his hardest to stay with us.  Unfortunately, Joey is going to need to pull through on his own and it is not appearing that is body is strong enough to do so.  We are remain hopeful, but realistic.

We have no idea how much more time Joey has with us. It would be very surprising if he made it until the end of the week. We are heartbroken and sad with the current situation. We are taking things day by day and enjoying our time with Joey.

Jonathan came again today to see his brother. It was wonderful to have my whole family together. We did a family hug before Jonathan left fearing it may be out last with Joey.

Waiting.....

Joey tolerated his procedure early this week very well, but unfortunately he is not doing better.  The doctors were hoping to sees some signs of improvement by now. It is reassuring that he has not gotten worse, but also concerning that he has not gotten better.

The biggest worry for Joey is infection and IF it can be treated. Right around the time that Joey got NEC they found a bacteria in his lungs. The type of organism that they found is very slow moving and can spread to other parts of the body. This same type of bacteria was found in the abscess of fluid that was drained from his belly earlier this week. The bacteria in his lungs may have spread into his belly and could have caused all of the issues with his intestines. There is no way to know this for sure or if bacteria may have always been there.

Our concern right now is if there is an antibiotic that will kill the bacteria that is making Joey sick. Joey has tested positive for a multi drug resistance. This means his body has developed an immunity to some antibiotics. This happens when you are on a lot of meds and in the hospital for an extended amount of time.

There are three main drugs that are used to treat the bacteria that Joey has. Unfortunately, he has developed a resistance to two of them. Right now our only hope is that the one drug, he is not immune to, will work. We are waiting on lab results that will tell us more about the bacteria and how immune it is to this drug.  If the bacteria has gotten smart and learned how to fight this antibiotic  then that is a major problem.

There is the possibility that experimental antibiotics could be used for treatment, if needed. Joey might not be an good candidate for them through. These drugs tend to me more toxic and harsher on the liver and kidneys, which in Joeys case are already hurting from all he has been through. If there are no antibiotics that will kill the infection we will have to have a conversation about comfort care and know that we did all that we could for him.

Whatever direction we are going, it is going to happen very slowly.  We should have an idea if it is for better or worse in the next few days.

Please pray for a quick turn around for Joey!  Good news can not come soon enough!

Here We Go Agian

Joey has not made anything easy for us. It seems that any complication that can happen with a procedure Joey takes the challenge to accept. This morning Joey had his third surgery due to a pocket of fluid that was causing an infection in his stomach. When the bowel becomes injured it can become sticky and sometime after a procedure, like Joey had, fluid that should be draining gets walled off and stuck in a section. This stuck fluid needs to be drained so that it does not make you sick.

Joey had been recovering nicely from his procedure two weeks ago. Late last week he was showing soft signs that an infection was brewing. After several tests all signs were pointing towards something going on with the gut. There was suspicion of fluid in the stomach that would have to be removed and worse case, more dead bowel. Exploratory surgery would be needed to see what was going on.

The procedure was really quick and again Joey tolerated it great. Upon immediately opening him up a large pocket of fluid was found that needed to be surgically drained. Luckily, there was no dead bowel. The intestines and belly were extremely swollen from fluid and inflation caused by the infection. Due to this the doctors did not close his belly up. His intestines and stomach will remain open for some time until swelling goes down and they heal. In a few weeks they should be able to close him back up.

One possible explanation for the pocket of fluid could be that feedings were started too soon. All of this started a few days after he started getting milk and it is possible that his belly was not ready for it. Moving forward the doctors are going be extremely cautious and move very slowly with feeding. Right now they are talking about waiting at least 8 weeks to try milk again! This was not great news to me as it extends are hospital time and I have two freezers overflowing with milk.

All of these set backs have been more then frustrating. Some days I feel like we are never leaving the hospital. Right now I can not see the light at the end of tunnel. Joey has been through so much already and still has a very long way to go. All we want is to have him home and that does not sounds like it is going to happen for a very long time. I feel like we are running a marathon and have  hit a "wall" at mile 8. 

We have been through so much that we have become numb to these big set backs. For any other parent hearing that your 2 months old is going to have a surgery is a big deal. We have been through so much that now any major thing feels routine..

After persistent set backs and not feeling like there is an end in sight I have still remained positive and hopefully through everything. Getting upset or angry is not going to make our situation any easier. I wish I had a crystal ball that could tell me what the future holds for Joey. Unfortunately, no one does and I have to be patient and hope for the best.

Emergency Surgery

Yesterday Joey had emergency gastrointestinal surgery due to the infection in his intestines.  Joey was diagnosed with something called NEC (Link) last Sunday.  NEC can be treated medically, but in sever cases surgery is required.  The doctors had been treating Joey medically for this and he was showing promising signs of improvement.  Unfortunately, late Monday night and early Tuesday morning there were significant changes in Joey's progress.  When you get NEC there is always a serious concern that your bowel can perforate.  There was suspicion that this might have happened to Joey, but he never showed any signs that it had until yesterday.

The doctors were extremely concerned that it was a perforation based on his sudden change.  If they did not do exploratory surgery to see what was going on with the bowel he would only get worse and if they did there was worry that he was not stable enough to make it through surgery.  The only hope for Joey to get better would be to do surgery even though it was very risky given his condition.  The doctors walked us through how it would go and ran through the list of complications Joey could face. The odds were not in his favor. There was a high likelihood that he would not pull through this.  Eric and I had the difficult discussion with the surgical team on what the plan would be if Joey was not tolerating surgery.  If surgery was to be aborted CPR would only extend Joeys time for a little bit. Given this we agreed with the team that if it came to it Joey would be made comfortable and laid to rest in our arms.

This was a very hard and emotional conversation to have.  Again, Joey was staring death in the face and here we were having another conversation about our child potentially dying.  It seems as soon as we take one step forward we take a giant leap back. It has been exhausting jumping hurdle after hurdle and I don't know how much more Joey or Eric and I can take.

With surgery lingering a few hours away the nurses got Joey out of bed and let Eric and I get our snuggle time with him.  We ate up every minute would could fearing it may be our last.

Joey's surgery was to be done in his room at the bedside.  The team felt that he was too unstable to even go to the OR (if this gives you any idea as to the severity of the situation).   Eric and I would be given a private place to wait, close by, where we could get updates on his progress.  As well be near if things were not going well.

The afternoon flew by and before we knew it was time.  It was impressive to watch the surgical team assemble in Joeys room.  They understood the difficultly of their task ahead and graciously worked around us.  Eric and I partially dressed in surgical gear and held his little hands while the team got him ready.  We told him that we loved him and to be strong.  We stayed with him until the team was ready to being and gave him worried kisses good bye.

Surgery was to be quick and the plan was to be in and out in under an hour. The first update came within  five minutes of sitting down. They surgeon had made the incision and Joey had tolerated it well. We anxiously sat waiting for the next update. Every time we heard the door open I held my breath awaiting the news that was about to be delivered. Luckily, no bad news never came!  The surgeon had found two sections of dead bowel, removed them, and they were closing him back up.  The whole thing took about thirty minutes and to everyone's surprise, Joey flew though surgery. The surgical team was impressed and could not believe it.

The next 72 hours are critical to see how Joey will respond and recover.  Last night, there were major concerns as to how he would do and to everyone's surprise, again, he had absolutely no complications.  He has handled everything like a champ.  Again he has defied the odds and proven to be a fighter.  He is such tough little guy and we are so proud of him.  The next few days are still very critical and we hope that Joey keeps making advances.

Holding Strong

Joey is still hanging in there.  I have had numerous people tell me that they were surprised he made it till the end of the week.  He is one little fighter for sure!  His numbers and markers for infection have slowly continued to improve.  Progress is slow, but it is promising that things are heading in the right direction.

I saw the start of a rainbow in the sky this morning as I was driving to the hospital. I found it a little strange and I took this as a sign.  Rainbows bring the promise that the troubles of today will pass, the optimism to hold strong in your faith, and vision of fresh beginnings.  I hope that this is a sign of a new chapter beginning for Joey.

Joey looks significantly better today then he did early this week. The doctors are not planning to make too many  big changes.  They are keeping him comfortable and allowing him time to rest.  He has been squeezing our hands and trying to open his puffy eyes.  He knows we are here for him and I truly think that the amount of time that Eric and I have spent with him has contributed to him getting better.  Joey has a lot of people in his cheering section and he is fighting to stay with us everyday. The road to recovery is going to be very long, but we are happy to see him making some progress.

Joey has kept us on our toes, and walking on eggshells.  It has been frustrating to see him make progress and then take significant steps back.  This journey has been very unpredictable and has proven to be much longer and harder then expected.  Eric and I are managing the best we can.  We have been lucky to have so many people willing to help and we are trying our best to care for ourselves.  In the midst of everything, we have been able to find some balance in our lives. We are adapting to the curve balls that Joey keeps throwing our way and we are trying to maintain some form of stability in our lives.

While there has been improvement from where things were on Sunday, we're still in a very sensitive state.  We are thankful for the loving support and encourage everyone to keep the positive energy coming our way.  It has certainly helped.

Another Rough Week Ahead

I am not going to preface this post with a bunch of small details leading up to where we are currently.  Joey's health appeared to be declining the past two days and sure enough, we have another problem.   Joey was showing signs of an infection, and they have discovered that he's got something called Pneumatosis Intestinalis which is also causing infection of the blood.   Joey had been recovering nicely from the previous cardiac arrests from two weeks ago, but he's still a very sick baby.   The latest complication is now the 4th body system to be compromised due to his condition.(Cardiac, Respiratory, Renal, and now Digestive)   Just to put this in perspective, ICU considers the compromise of 3 bodily functions to be very critical, and we have 4.   Having that many issues is usually a early sign of the body shutting down.  Joey currently has been provided some aggressive antibiotics to counter the infections.   The antibiotics that he is on are pretty much our last resort for treatment in our situation.  Eric and I will spending the next few days praying for positive outcome while staring death in the face.

We wanted to wait till Joey was discharged from the Hospital to do a traditional Baptism for him, but given the severity of the situation, we decided to do so tonight.

Please continue to keep little Joey in your thoughts and prayers as we venture down this very rough path.