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.

4 comments:

Shannon said...

You're entitled to days like this. Most people will never understand what you've been enduring. I hate that he is going through this. Gabe stays in my thoughts and I wish for the best.

Meghan said...

I am constantly thinking about you, gabe, and, of course, the entire Aguilar clan. I am so proud to be part of your life. I am so proud to know such a strong woman. You are an inspiration to me. Keep doing what you are doing. Gabe can feel it. He knows you are there for him, doing the best that you can! xxoo m

cmacdon72 said...

Shan and Jess,
The love for your children shines through.. Gabe gets his strength knowing he has you both as his parents. Please remind yourselves that you are wonderful parents and you will always do what is best for your children. xoxoxo..

Robin said...

It is amazing how Gabe is already a hero. He and his presence brings us all closer to the angels, for surely they are riding along on his shoulders. His impact on the hundreds of lives he's touched is inmeasurable. Your plea for us to all count our daily blessings has not gone on deaf ears. We are with you, with love, in darkness and light.

Gabe+Love=Inspiration