A few little helping hands :)
Thursday, July 23, 2009
Sunday, July 19, 2009
It's tough to write an update, because essentially, things haven't changed. Our just-in-case overnight bags have been packed for a week. Samuel is in a constant state of "hanging on". Every day with him is a celebration! He has defied the odds to even be where he is today - here with us, making marginal improvements. Hooray! But, medically, the odds are still very much against him. Samuel still has a huge battle in front of him. To sum it up, when we ask the doctors what they think, they say that if there were no chance for Samuel, we wouldn't be trying all of the things we are trying. As you can imagine, that's not easy to hear. So, if we seem a bit scattered, or even crazy, please forgive us. Most moments we can't decide whether to jump for joy about another hour with our littlest guy, or cry because we're scared about what the next day might hold.
This is where Mohawk Therapy comes in... it's really just a fancy word for realizing how great your family is :) That each moment is precious! For example, we came home from another day at the hospital, and discovered our little girl is growing a mohawk! Made me realize that there is nothing better than the every day moments that happen with your family. Check it out...
DB can always make me smile... just one example was a few weeks ago... nothing better than a homemade diaper sign :)
Wednesday, July 15, 2009
Now, Samuel is the man with a plan. Again, it could all change in a moments time, but we can do nothing but hope for the best. Friday night was a nightmare... but he has spent the last four days getting, and trying to stay, stable. We are tweaking the "perfect storm" of JET ventilator settings all the time, constantly working on keeping his O2 requirement down, the CO2 level in his body down, and the pressure support of the JET down from the highest settings. Four days ago, most of the medical team was honest with us that they were unsure he could ever get to where he is now. Turns out, Samuel is up for a challenge!
Samuel is a fighter. We have heard it from Day 1 - now we know just how true that is! Over the last four days he has pulled himself up from rock bottom, and now he is hanging on. We are thankful for every day - every miracle. Our ideal plan would be to consider slowly lifting the sedation and paralysis in a little more than a week. He will have to be able to hang on when he's awake... this is the next big hurdle. From there, it's another waiting game. From what we understand, Samuel will let us know in the next 1-5 weeks what his little body is capable of doing. Whether it can keep up with him, and grow new lung and begin to repair some of the scarring, or not.
The ideal long term plan - of course, we have no idea what miracles look like - would be for him to come home near his first birthday, with his own lungs, on a ventilator. But today, we are still hopeful for tomorrow.
Every day with Samuel is a gift. In fact, this week has made me realize that EVERY day is a gift. When we are at the hospital, we hold Samuel's hand every minute we can... when we get home from the hospital, Olivia and George are in our arms until they go to bed... and when we are in between, I'm just trying not to get a speeding ticket. DB and I are taking each hour as it comes... nothing but hopeful and optimistic, but with pieces of reality sprinkled on top. Sometimes I hate reality - it makes me cry, a lot.
Monday, July 13, 2009
In the same breath, we also learn a little more every day about what our little guy is up against, and we are very scared. Samuel has to grow more "good" lung. We can work towards the very best situation for him to be able to do that, but then it is a waiting game. Not only do we not know if he can actually grow good air sacs, but we also don't know at what rate they would grow.
Photo from the 4th of July... can't bring myself to post current photos yet. It's tough... his little face is so puffy due to the sedation and paralysis. It looks like our sweet boy is in a deep, deep sleep.
Today he got to a great place to be able to grow new lung! He seemed to have a very restful day... his heartrate was in a good, relaxed place, the level of CO2 in his body is down, and we were able to ween on his oxygen. All of these are things we want... and as of yesterday were very unsure if they could be accomplished. His low heartrate means the paralysis and sedation are working and he is not stressed - yea! The low CO2 level is great because that means the ventilator is working - his O2/Co2 exchange is good - yea! The low levels of oxygen are absolutely wonderful! High levels of oxygen are toxic to the lungs (and the eyes, but his look fantastic and are already fully developed). I know that sounds crazy... here's an example... the air that we breath is only 21% oxygen. Anything over 60% is toxic, which means that with high levels of oxygen, it would be nearly impossible to grow new, good lung. As of yesterday, it was all we could do to get to 80%... and as of tonight his oxygen is down around 50%, which opens a door for progress.
But, his ventilator setting are still very high. We need them to go down, but in order for that to happen, he will require more oxygen. SO - the next goal is to get his oxygen low enough that we can bring down his vent settings and increase his oxygen, but still keep it under 60%. It's like trying to create the perfect storm.
All of this, and even when the perfect storm is created (which it will be because we have awesome docs, nurses, and RTs :)), we still just don't know if Samuel can grow new, good lung, and if he can do it in time. We are playing the waiting game. If Samuel can hold on, we will re-evaluate his care plan in two weeks to discuss whether or not it appears that he is growing the new air sacs.
We celebrate each battle he overcomes, like being able to come down on his oxygen level today. We are full of hope and prayers. We also know the mountain that is ahead and the look in a doctors eyes when they tell you they can't make you any promises. Each day with Samuel is a gift! Our emotions are drained... thank you so much for all of your support and your prayers, it means the world to us. Miracle - here we come!
*We won't know more about the option of a transplant until the end of the week - which is okay, because at this point he is not stable enough to be transported anyway (pediatric lung transplant is very new and very risky, so most hospitals, including ours, don't do it). The docs at two wonderful hospitals will be reviewing our case this week.
**George and Olivia are doing really well! It's a good thing they were used to hanging out with lots of different people :) DB and I did come back to Beaufort last night and tonight to see them... we miss them so much. But, we've got family and friends that are loving on them and keeping them entertained, fed, and happy. It's been a huge gift for DB and I to be together with Samuel the last three days, and to still know that O and G are happy.
Chillin' - I am so hopeful for Samuel to do this with his brother and sister!
Sunday, July 12, 2009
Our baby is very sick. I will go into more detail - but Samuel has been intubated, medically paralyzed, and heavily sedated since Friday night to get, and keep him stable. Our hearts are breaking.
Here is the long version... as we understand it so far...
After a successful tracheostomy, Samuel was breathing easier and looking fantastic! He loves to read books and make lots of eye contact with visitors, so the trache was great because it allowed him more freedom. But, routine tests were continuing to puzzle us... for example the CO2 level in his body was going up and up and eventually off the charts. There was talk of reintubating him - back on the ventilator again was hard to swallow. Prior to making that type of decision, pulmonology and our attending neonatologist consulted and decided to get a CT scan. They don't routinely do CT scans on BPD babies... they even told us going into the scan not to expect much out of it, but they wanted to cover all bases, even those not routinely used.
What the scan showed was devastating. It was also completely unexpected... from what we understand, most BPD babies don't have these results. But, it does explain his pattern of crashing. The team actually went over the scan numerous times to be sure of what they were seeing. Everyone was amazed that Samuel has done as well as he has with what is going on inside his body. Samuel has very little "good lung"... large portions have cysts and signs of pulmonary fibrosis, which are like scars where the lungs have been damaged from the very thing keeping him alive - the ventilator and high levels of oxygen. These bad portions are so large and numerous, that they cannot be removed. In addition, the parts that are good, aren't great.
Here's the easiest way I have found to describe the scars, and then treatment plan... normal, good, lungs are filled with air sacs that look like spider webs. This is where the O2 and CO2 exchange happens. Instead of the webbing, Samuel's lung have big cysts which create 'flat' surfaces. Therefore, when the oxygen comes into the lungs, instead of being processed through the air sacs (spider webs), it takes the path of least resistance, which is to pass through the flat, scarred surfaces. When this happens, there is no O2/CO2 exchange. This is where we get into serious trouble.
Therefore, it was determined that the best treatment plan would be to go back on the JET ventilator, which delivers literally hundreds of little breaths every minute. Instead of big puffs of air, the little breaths would be forced to go though the air sacs and get the O2/CO2 exchange. Plus, this allows the scarred areas to collapse, with the hope that with time the good air sacs will grow and multiply. Because he is such an old baby (bigger and stronger than most in the NNICU), he would have to be paralyzed in order to get him to relax and not fight the JET. With the paralysis comes heavy sedation, so that he won't know he's paralyzed and be scared and uncomfortable.
DB was already at the hospital visiting when all of this was determined. I was called immediately. Omi and aunt Nancy were on their way to the house to watch Olivia and George. Because things were looking so grim, the plan was for me to be able to hold him for one hour... just in case. We made eye contact, he heard my voice, and I held him for 5 minutes. It was truly amazing that they had put the plan in place. He started crashing... and as DB and I held his blue little hands the team bagged him and kept him breathing. Just then the JET ventilator arrived - it had been ordered from another hospital in another state (all at our hospital were already in use) - and the RT's were furiously preparing it for our guy. The paralytic and morphine were already on hand, in addition to other drugs that I can't spell - in they went. And out he went... into medically induced paralysis. He was hooked up to the JET, and we hoped for the best.
It was the worst night of our lives. But 24 hours later, he was considered stable... with the understanding that one bad event, and we could lose him. Tonight, we are still in the same place. The medical team has worked for the last two days to find the perfect JET settings, and tonight he seems comfortable. His O2/CO2 exchange seems okay... his heart rate seems okay... and he looks relatively rosy, just like a little baby should. We celebrate that!
We celebrate, but in the same breath we are terrified, and sad, and hopeful, and praying for a miracle. We find out more tomorrow, but it seems that we may only have two options... to work towards a possible lung transplant or for a miracle. We're not even sure if he is a candidate yet for the transplant... but short of a miraculous healing of Samuel's air sacs, it may be our only option.
Tonight we were asked to be thinking about what we would want if Samuel crashes... Four days ago he was on the verge of smiling and we could hold him in our arms. We are in shock. We are asking for your prayers... for our entire family of 5.