Thursday, November 19, 2009

Gabriel Lee Aguilar
July 1, 2009
November 16, 2009

Saturday, November 14, 2009

Our Angel

In a few days our precious son Gabriel will have his Angel wings.

After receiving devistating news on Friday, about Gabe's brain, we have decided it's time to let our son go. This is the most difficult decision we have ever made. The thought of saying good bye to our baby, leaves an excruciating pain ripping through our hearts. Jesse and I must do what is best for Gabriel though, not us, and we feel we have made the right decision.

Thank you for respecting our space, as we try to collect ourselves and figure out how to move forward in life, with a piece of our hearts forever missing.

Gabriel, you are Mommy and Daddy's hero!

Monday, November 9, 2009

November 9, 2009

I like to think of myself as an optimistic person. My cup is usually always at least half full. Over the last four months I have some how been able to stay rather upbeat about everything going on with Gabe. Always realistic and aware of the worst case scenerio, but able to stay strong and hope for the best. The last few weeks have been very dark for me. I am having trouble looking at everything regarding Gabe, and feel much hope. I know this sounds absolutely horrible. Especially coming from a mom, but this is where I am right now. Jesse and I have always been, and will continue to be, Gabe's biggest and loudest cheerleaders. I will never give up on him. He is a piece of my heart, and my heart aches non-stop 24/7 for my son. The cruel reality of all this is, Gabe's body did not form in a way that allows it to be self-sustaining. If it wasn't for modern medicide and all of the fabulous machines out there, Gabe would not have made it out of the delivery room alive. We are working against mother nature and trying to fix this little body, which quite honestly, might not be fixable. We are not ready to throw the towel in yet, but this battle is getting really really scary, and we are getting to the point where we may need to start trying some of the last resort medical interventions to see if they can heal Gabriel. His body does not seem to be able to heal on its own.

On Saturday, 400mls of fluid drained from Gabe's chest tubes (mostly the left side), and on Sunday 300mls came out. If G's lymphatic system was capable of healing itself we should be seeing much smaller numbers coming out at this point. With 100's of cc's of fluid coming out a day we need to start talking about pleurodesis (chemical introduced into the pleural space causing irritation and scaring of the sack around the lungs and the chest wall, which makes them stick together closing off the space between them, which should prevent fluid from building up between them. Of course the fluid could begin leaking somewhere else in the body). We first want to find out if there are any other imaging options for the lymphatic system. It is an extremely small system running throughout the body and is almost impossible to see. If we could some how get a look at it perhaps we could see where the leak(s) is coming from. I was Googling the other day and found a study where a group in Japan used MRL (magnetic resonance lymphography) to do some studies on the thoracic duct. This is a new form of MR imaging. I told of couple of G's surgeons about it and they mentioned it to radiology. Apparently it peaked the interest of one of the radiologists, so we will see what happens here. This new imaging could definitely put Lucile Packard Children's Hospital on the map, and we would most certainly be open to Gabe being the first one to try it out. If it worked, it could be a win win for us and LPCH.

On Friday, Gabe was in a good enough place to try CPAP again. The transition went much smoother then it did two weeks ago, so it was a good start. Gabe started out breathing a little fast, but then settled down. His CO2 rose, but then started dropping back down. Jesse and I stood by Gabe's side, holding his hands, and cheering him on. As time passed Gabe began to breath faster and faster. A blood gas was taken, and his CO2 wasn't much higher than it had been when he was on the vent. He was having to work really hard, but was able to blow off enough CO2 on his own. I cannot even begin to describe how exciting and scary this experience was. I will never again take a single breath for granted. We watched while the hours crept past. There was one point when we thought he was going out, but Nurse "L" jumped in a worked her magic and G was up and going again. There were several times when Gabe started to get really agitated. When this happened his O2 saturation dropped and his CO2 levels went up. Jesse, Nurse "L," and I worked hard to calm him back down. After about 3-1/2 hours deminished breaths sounds were noted on the left side and an x-ray was taken. It showed a compromised left lung. Whether it was collapse or fluid building up in the left pleural space, we weren't sure? At change of shift we stepped out to grab a quick bite to eat. When we got back Gabe was still huffing and puffing, but seemed to be resting comfortably. More hours ticked by, and at 10pm we headed home to relieve Grandma Reynolds from toddler duty. Shortly after we left, Gabe had a major desat and went out. Nurse "S" got him back quickly. The team wanted to reintibate at this point, but Nurse "S" said no. She got him all fixed up and he was back at it. At 5am I received a call from Nurse "S" letting us know that Gabe was reintibated at 4:30am. Gabe had gone for 14 hours and 10 minutes. We are very proud our little guy. This was a huge battle for Gabe. We are so very appreciative of Nurse "L" and Nurse "S!" If it wasn't for them and all of the work they did, Gabe would not have made it as long as he did.

Gabe walked away from his 14 hours and 10 minutes of breathing with a collaped left lung, high CO2 levels and complete exhaustion. He has spent most of the last three days sleeping and letting the vent do all of the work for him. We are excited about this marathon Gabe ran, but it did not bring us much relief. Gabe is four months old, and has lungs that can barely support him for 14 hours of breathing, and unfortunately we cannot give his lungs all the credit for the work. He had high pressures of air being forced through his nose and very high levels of sedation on board to keep him calm. It is taking him several days to recover from breathing. His left lung has reinflated, his CO2 levels are back down, they have been able chip away at the higher vent settings he required after CPAP, and start weaning on his sedation again. This experience, of breathing, took such a tole of Gabe his electrolytes are now all out of wack, and overall it pushed him backwards. He is recovering, but breathing, the most basic of life's necessities, is not an easy task for Gabe. He has small lungs, and now, more than ever, we wonder if they will ever be able to work on their own. If they are capable, it is going to take many months to get them going. A trach has once again been laid out of the table, as a stepping stone in this journey of breathing.

Jesse and I will sit down with Dr "B" this week to have a very serious heart-to-heart about Gabe. Like I said before, we are not ready to surrender in this battle for our son. We want to exhaust all options and give Gabe the best chance possible at life, but if machines are the only way we can keep him alive, and he has to spend his life in a care facility...that is not living. More than anything in this world I want to put Gabe in his car seat and bring him home. I want to take him outside to hear the birds and the wind blowing through the tress. I want Kayla to have her little brother to torture with tea parties and share a lifetime of memories with. Just the other day, out of nowhere, she said: "I want to hold Gabriel." My heart has never ached so badly.

Everyone is always saying they wish there was something they could do for us. Here is what you can do: never take another day for granted; if you love someone, tell them; if you are holding onto a grudge, let it go; don't put off until tomorrow, what can be done today; and always, always, take the time to stop and smell the roses. Life is short and unpredictable. Please take time to enjoy every breath you are blessed with.

Thursday, November 5, 2009

November 4-5, 2009

November 4: Gabe spent the first part of the morning awake and hanging out with Nurse "N." He started dosing off for a nap around 10am, which was of course just when I arrived. I was looking forward to "playing" with Gabe when he woke up from his late morning nap, but apparently it was a sleepy day, becasue G spent most of the day napping. There were only very short periods where I got to see him awake. That's ok, if I had the option of sleeping all day, I just might. Since Gabe has been pretty stable for the last few days they weaned his Versed, Hydracortisone and his vent settings. He handled all of these changes well, and had a good night.

November 5: When Nurse "L" arrived this morning, Gabe was quickly becoming a wild man. His temp was up, and he was not happy. She removed the blanket covering him, applied a cool cloth to his head, and any other tricks she had up her sleeve. Not much seemed to be helping Gabe. Since it had been 24 hours since his last PRN, she decided these might be withdrawl symptoms and decided to give him a extra dose of Morphine. Thank goodness Nurse "L" knows Gabe so well. This PRN did the trick. G calmed down and was a happy little boy. When Jesse and I arrived Gabe had once again dosed off for his late morning nap, which again turned into an all day nap. Since Gabe handled his weans so well yesterday they decided to wean a bit more on his Versed and made a pretty big step on his vent. They turned the rate setting on the vent down from 16 to 12. This means he is now receiving four less breaths from the vent. Super G showed us his super powers today, and thus far, has done just find with less breaths from the vent. I spent some time watching the vent screen today and was very excited to see my Bubba taking so many breaths on his own.

This afternoon we spoke with Dr "M" from the pediatric surgery team. With the amount of fluid Gabe's chest tubes have been putting out, the surgery team was called in to consult once again. Dr "M" spoke with us about two possible surgeries to help resolve the pleural effusion issue. One is putting a powerdy substance into his pleural cavity. This powder roughs up the outer lining of the sack around the lungs and the chest wall. The hope is the two scared surfaces will stick together and there will no longer be space for the fluid to collect. Without space to collect the idea is that it was force it to stay in the vessel it belongs in. Of course, the fluid could just find another open space, like the abdominal cavity, to flow into. The other surgery is one where they go in and tie off the thoracic duct in hopes of stopping the leak. With this one is it somewhat of a shot in the dark, becuase you are hoping to tie it off in the right area and there is the risk of actually causing more holes. There is of course much more to both of the surgeries, and they do have names but I can't remember them right now, however I will not get into all of the little details becuase we are hoping to not have to take the path of surgery. Over the last week Gabe's right side still hasn't put much fluid out, and over the last two days the fluid on the left side has gone down drastically. Becuase of the new trend (fingers crossed this is a trend and it won't start flowing again) the surgery teams feels, and we agree, that it's best to wait a few more weeks and see if the fluid is slowing down and if the lymphatic system is starting to heal. If the fluid keeps coming, we will try and collect more information about G's lymphatic system so we know which of the above mentioned surgeries might be his best chance and healing. Dr "M" is going to speak with radiology and find out if there are any other imaging options that might provide a better look at his lymphatic system. Neither of these surgical procedures are very pleasant, but Gabe can't leave the NICU with chest tubes. Fingers crossed his lymphatic systems really is starting to heal and this slow down in the chest tube output, is really a slow down.

We also sat down and spoke with Dr "R" today. We quickly went over the discussion with Dr "M" and the pleural effusions. If his lymphatic system is going to heal on it's own, the chest tubes are the best form of treatment and they are in place, so for the next few weeks we will watch closely and revisit this issue if things don't start getting any better. The main focus of today's meeting were Gabe's lungs. They have to start working on their own!!! A vent is ment as a temporary fix, not a permanent one. The longer he is on the vent, the more damage is going to occur. Dr "R" is happy with the progress Gabe has made on the vent over the last few weeks, since his last CPAP trial, and thinks he is ready to try again. If Gabe is in a good place tomorrow it's marathon time for his lungs. I already have butterflies in my stomach just thinking about tomorrow. I know Gabe can do it, and I just hope tomorrow is the day. If he doesn't start making some impressive progress with breathing in the next few weeks and it looks like it is going to take several more months to get him off the vent, we will have to start discussing a trach tube. Go lungs go!!! We don't want to have to put in a trach. That is opening up a whole new can of worms. We are very appreciative of Dr "R" and the team taking the time to sit down with us, away from the bedside, to discuss Gabe and how we can help him move forward.

At this point I truly think Gabe is in the best condition he has ever been in, but is still far from being healed, and is still in a scary place. Let's hope Gabe's lungs are ready to start doing all of the work on their own, and he can break through this wall he has been up against for so long now.

I will be sending Bubba ALL of my Mommy Super Powers tomorrow!

Tuesday, November 3, 2009

November 2-3, 2009

So what has Super G been up to for the last few days?

Gabe spent yesterday hanging out with Mommy and Nurse "L." He was a bit agitated first thing in the morning, but after a little happy-juice all was good, and he spent several hours wide awake and quite content. Of course as soon as I showed up he drifted off. I enjoyed just sitting with him; holding his hand and watching him sleep, and making sure the crib vibrator never stopped shakin.' Since his right chest tube hadn't put anything out in almost a week, the plan was to remove it yesterday. He had an ultra sound in the morning to make sure there was no fluid before taking the tube out. Unfortunately the ultra sound did show a "moderate" fluid pocket on the right side. Dr "R" tried to get the fluid flowing through the tube, but nothing seemed to work. Since the tube has been in place since September 10, it was decided it would be removed today and a new one placed. Noone wanted to see another tube going in, but perhaps if the fluid was gone, Gabe would be able to get down to the vent settings Dr "R" wants to see him on. Another thing I thought about was that it took almost a week for a "moderate" amount of fluid to build up, while the left side is putting out around 200 mls a day. Maybe the right side is slowing down? Other then waiting to find out if the right chest tube could be removed, and trying to help Gabe get rid of some nasty gas with some tummy massages by Nurse "L," Gabe had a pretty mellow day yesterday.

Gabe had a pretty good night, but was quite agitated, by more gas, when Jesse arrived this morning. The poor little guy was trying to sleep but kept waking up to those darn gas pains. Jesse gave him a little tummy massage and was able to help him work a little out. Jesse helping Gabe pass gas...true Father/Son bonding. In rounds the two big issues discussed were the upcoming chest tube removal and reinsertion, and his low albumin levels. With the amount of fluid his left chest tube has been putting out, we were not at all surprised by the low albumin levels. Gabe received a dose of albumin to help bring his levels back up. The rest of the day was spent waiting for an ultra sound machine to come avaiable for the chest tube "project." Finally around 3:00 the ultra sound machine, and radiologist arrived. The old tube was used as a marker, and the new tube was inserted just below it. They spent a little over an hour trying to get the new tube situated in the pocket of fluid, but were not having any luck. They finally decided to stop becuase the pocket of fluid was so low and so close to Gabe's liver they were affraid to mess with it anymore and cause damage to the lung or liver. The new tube was removed. They pulled back a bit on the old tube and a little fluid came out. Dr "R" and the radiologist decided it was best to leave the old tube, in it's new position, in over night. If no more fluid comes out over night they will remove it tomorrow and watch closely. If more fluid builds up, maybe a larger pocket of fluid will be easier to drain. Poor little Gabe. Even with extra sedation, I can't imagine it's very comfortable to have someone manipulating a chest tube around in your pleural cavity.

Gabe and his chylous pleural effusions, will be discussed at the weekly pediatic surgery meeting tomorrow. We are eager to hear what they have to say about this leaky lymphatic system that doesn't seem to want to heal on its own.

Gabe's current goal is to work those lungs out, to start taking more breaths on his own, and to hopefully be ready to try CPAP again in the near future. At last week's Care Conference a tracheotomy was mentioned, and we just don't want to go there. Come on Bubba! Time to get those lungs working on their own!!!

Sunday, November 1, 2009

November 1, 2009 - Happy 4 Months!

Happy 4 Months Gabriel!

What an amazing and crazy four months it has been. Amazing becuase we didn't know if Gabe would make it through the first hours of his life, and here he is 4 months later still fighting. Crazy because the last four months have been the most intense roller coaster we have ever been on. The ups and downs of daily life have been draining some days, and exhilarating others. When I think back on the obstacles Gabe has over come, I am in complelte awe of my son, and am so pleased by the progress he has struggled so hard to make. At the same time the fact that he is 4 months old, still has several hundred mls of fluid building up around his lungs a day, and still doesn't have lungs strong enough to function on their own, really really scares me.

Every day Gabe is on a vent more damage is done to his lungs. He has been doing well on his new big boy vent, but still has times when he doesn't breath at all and the machine does all of the work. G's lungs are obvisouly not ready to do all of the work on their own, and we don't know if they ever will be. We are hoping to try CPAP again in the near future, and to start getting more aggressive with trying to get his lungs going.

Gabe's right chest tube has put out extremely little fluid in a little over a week now. An ultra sound last Monday showed no fluid around the right lung. If tomorrow's ultra sound shows the same, then his right chest tube will be removed. We are all praying this lack of fluid build up means the part of the lymphatic system that was leaking into the right pleural cavity has healed. Now we just need the left side to follow and stop putting out several hundred mls of fluid a day.

Another issue, which I believe I mentioned in a blog not too long ago, is Gabe's nutrition. Gabe is not growing becuase he is not getting enough calories. There is only so much TPN can do for him, and with the leaky lymphatic system he really can't eat. His size doesn't seem like something we should be worrying about at this point, with the larger, more life threatening issues at hand, but he is fighting a huge battle and his body needs proper nutrients and calories to be in tip-top battle condition. Dr "R" is trying to figure out how to work on getting Gabe more calories.

We are trying to stay strong as we battle along side our son, but some days are harder than others when it comes to staying positive. We know Gabe is a fighter and has this cute little personality, but what we don't know is if we can heal him. Every day we have with Gabe is a blessing, and all we can hope is that these days and months we have had with him thus far, turn into more months and into years.