Monday, August 31, 2009

August 31, 2009

What a day! I feel as if I somehow wake up in the morning, sit in a hospital for a couple hours and then it is time to go to bed. I seriously worry sometimes how I actually made it to the end of the day without actually realizing the time. I get there in the morning at 9 a.m., listen to rounds and then it's time for lunch. Once I get back, I check on him and then it's midnight. I think I have what all the nurses have been warning us about, NICUITIS. I didn't know what they meant until now and I could not have come home at a better time. Don't get me wrong, there is no place I would rather be than with my son but it just starts to mess with your mind in a way I can't even put into words. You walk into the hospital and somehow enter some kind of space time continuum. Every time I look at the clock, what seems like minutes are actually hours and the sun rises and falls and somehow you miss it. Anyways, enough of listening to me ramble about my delusions.

This was another big day for Gabe, he got his new "big boy" ventilator. They wheeled it in about 11 am and set it up, finally making the transition about 12 pm. At first Gabe struggled at the new effort that he had to make to breathe, but soon became acclimated and settled down. He spent the rest of the day fairly comfortable and is impressing us all. The new ventilator and setting that he is on lets him initiate the breathe and then it fills in when he is unable to get a full breathe. That is the best way to describe it although there is a lot more happening. Gabe did not get the new chest tube that they had been talking about. The doctors felt that there isn't enough fluid to necessitate another chest tube on the right side. However, they are going to keep a close eye on him and if they see anymore fluid accumulate or his numbers start to drop they are going to get one in right away. So let's hope that nothing comes back.

They have increased Gabe's feeds so that they may test his lymphatic system. The doctors believe that Gabe has what is called a chylothorax. Basically what this means is that fats that he digests leak through his lymphatic system into his chest. Not good. They began feeding him yesterday and haven't seen the milky color in his chest tube that you would usually see. However, they are seeing the numbers that they usually see, so they are increasing the feeds to see if the milky color will come out. If he is positive for this, they have medication that can help. If this fails to work there are other options which require surgery and we aren't going to talk about that until we have to.

The good news it that Dr. "B" talked to me today about Gabe's MRI results. The MRI showed that Gabe's brain is normal in structure and doesn't have any injury, bleed or damage. He only said that it is underdeveloped for his age and this could be because he has been on a ventilator since he was born. I told the doctor that this was ok since his dear old dad had an undeveloped brain as well. I don't know if they got the humor, but if you know me you would laugh.

Tomorrow we are going to have a conference with the doctors to discuss all of the findings thus far. We will cover where we have been, where we are and where we are going. Hopefully we will hear a little more about the liver biopsy that we are all on the edge of our seat about. Thank you all again for your continued prayers and support of Gabe and our family. Talk to you again tomorrow as soon as we get out of our meeting.

Sunday, August 30, 2009

August 30, 2009

What a day! Gabe had an incredible night with nurse "J" and didn't give her too much trouble. During this mornings rounds they decided to switch Gabe back to just the Albumen instead of alternating to the FFP. Despite Gabe's rocky past with FFP, every new doctor wishes to give it another try which always ends with us taking it away. I think the next time they decide to use it, I will point out the lessons of the past. He seems to be doing much better with just the Albumen. They also switched Gabe back to just using Lasix only, instead of alternating between the Lasix and HCTZ. This seemed to have helped as Gabe has stopped puffing up and is now shrinking down again. Gabe has also been enjoying his meals that he has been getting since yesterday. We have been worried that the fats from the feeding would leak out of his lymphatic system into his chest, which would indicate a chylothorax (not good). If he did have this leaking, we would see whitish fluid coming out of his chest tube. Luckily over the last 32 hours we haven't seen anything. Hopefully it stays that way.

Today Gabe behaved very well for his nurse "C", she said he wasn't being a little maniac like he had in the past. She didn't have to give him as many pain meds today as we have had to in the past and this could be because of Gabe's new audio treatment he is receiving. Today we implemented the "Sound of Music" plan. That's right, Gabe spent the day rockin' out with his very own iPod. I loaded about 12 hours of relaxing spa music which seemed to keep him very calm all day long. In fact we have already had to charge it back up once. I will have to load up some classical music along with some nature sounds to keep things from sounding like a spa all day long. That might get annoying after a few days, so we will change it up.

Tomorrow is a big day! Gabe will be getting an ultrasound in the morning to look at the fluid that has been collecting again on his right side. If it looks like there is more fluid they will be calling the surgeon back up to work with the radiologist to place a new pigtail chest tube in his right side. Gabe will also be getting a new "big boy" ventilator, since he is outgrowing the one he has now. They say that this new ventilator should make him much more comfortable and hopefully he won't be fighting it as much as he is now. Definitely looking forward to seeing how this all works out.

As for the diagnosis, we are still anxiously waiting. Dr. "B" said that his mission this week is to have an answer and for this he is bringing in the head doctors to all weigh in on the situation. They should also have the final reports back from the biopsy and the MRI. We are scheduled to sit down with Dr. "B" on Tuesday and go over all the results. We are very much looking forward to this. Finally have some answers and then move forward in a positive direction. Please keep your prayers coming. Thanks again for reading and take care.

Saturday, August 29, 2009

August 29, 2009

As I sat down to write this blog I actually had no idea of what the date actually was. I cannot believe that August is over and we are heading into September. I asked myself where summer had gone, because that sure went fast. Kayla and I spent the last two nights staying at home while Shannon was with little man. The new schedule is great and Kayla is back to her old self. Making us laugh, smile and taking our thoughts off of our situation for a few minutes. It was wonderful being at home, we enjoyed the 105 degree weather inside our 76 degree house. Kayla didn't want to leave the house, protesting that it was hot and going back inside. I had to lure her out with promises of ice cream and a new movie. It's a blessing being back at home, definitely a great mental break.

We are still waiting to hear the final results of the biopsy, which seem to be taking forever. As I posted before, they told us it was definitely not cancer. However, they are still testing the sample because what they are seeing is very rare to see in a baby. They keep telling us they want to be absolutely sure before they tell us anything. The longer we wait, the more we feel like they aren't any closer to figuring it out. Frustrating to say the least. We would love an answer because if we had a diagnosis, we could have a direction for treatment. So unfortunately not much to tell you about the biopsy right now.

Gabe did get an MRI of his head last night, which almost didn't happen. Our wonderful nurse "C" got Gabe all set to go down to MRI, which is like moving a trailer park double wide. Then the neighbor kid got really sick and crashed which brought every doctor in the place running. Then they brought in all the special equipment and blocked our way out. For a little bit we didn't think Gabe was going to make it down. Luckily they were able to fit him in at a later time at night. Nurse "J" and nurse "S" took Gabe down to MRI and stayed with him the entire time he was there. After his MRI, nurse "J" asked the doctor if he could give us a little preliminary if possible. She even tried bribing him with cookies, which was very sweet. It's amazing how all the nurses and doctors have become attached to Gabe and show a personal interest in him. It makes Shannon and I feel wonderful knowing how many people at LPCH truly do love the little man.

The reason they decided to do and MRI of Gabe's head was to check for tissue death in the brain. They want to make sure that there is no brain damage from all the oxygenation problems that Gabe has been having. They also don't know what all the medications are doing to him. So we are praying that everything will be just fine and after this we hopefully won't have to worry about it again.

Today we decided to take a little break from all the craziness and spend a little family time together, which we haven't had much of this summer. Gabe was cooperating so Shannon, Kayla and I slipped out for a couple hours to see the firefighters at the chili cook off in San Mateo. We had a great time despite the 100 degree heat. The chili was great and seeing all of our wonderful friends made our day. Kayla even got to ride the parks little train, which she absolutely loved. We ended our day together by having dinner and saying goodnight to Gabe before we went our separate ways. It's tough not being with Shannon and Kayla but I know that both our kids are getting more attention than they were before.

Tomorrow is a new day and I look forward to forward progress.

Thursday, August 27, 2009

August 27, 2009

Another day has zoomed by and here I sit at midnight trying to remember the events of the day....hmmmmm...what the heck happened today?

Kayla and I spent the night at home last night and Jesse stayed at Ronald McDonald house. He spent the first half of the day with Gabe then headed home for the big kiddo-switcheroo. We have decided to take shifts with the kids. One of us will spend two days at home with Kayla, and the other will spend two days with Gabe, then we will switch places. It means less time Jesse and I will have together, but we have the rest of our lives for that. In our current situation we think its worth sacraficing time together to have better quality time with our kids. This also allows Kayla to live at home and get some sense of normallcy back in her life and we also get to spend some time at home ourselves, which we have learned is completely necessary to recharge the batteries. Every solider needs a night or two off the frontline to re-center before stepping back into battle.

Jesse was at rounds this morning so he would really be the best person to be updating you on Gabe today, but I have the computer so you're stuck with whatever tid-bits I can remember from the info Jesse passed on to me about 12 hours ago. I promise to provide a better report tomorrow. For the most part Gabe had a pretty mellow day. His heart rate was sitting a little hight at the beginning of the day and he had a bit of a fever, so the fabulous nurse "A" opened up his "box" (as Kayla calls it) and that seemed to cool him off a bit. His heart rate gradually lowered throughout the day and when I said goodnight to him at 11pm he was resting comfortably. Tomorrow at 5:30pm Bubba goes in for his head MRI. After spending 8 weeks on doses of sedatives and painkillers large enough to take down a small rhino Dr "B" thinks it's wise to take a look at G's coconut to see how things are working up there. The procedure itself should take about an hour, but with the small army it takes to transport him to-and-from the MRI room it will probably take closer to two hours before Gabe is back in the NICU and resting comfortably in room 3, slot "A." I did learn tonight that some bacteria was found in the fluid taken from the left chest tube. They are going to start G on some antibiotics until the final results are in. Noone seemed overly concerned about these findings and whatever may be trying to grow in there should be successfully knocked-out by the antibiotics. They will test the fluid again in 48 hours to make sure the bacteria is gone. The plan for the coming days is to keep weening the vent settings and by Monday hopefully get Bubba switched over to his cool new "big-boy" ventillater. Apparently due to his age and size he can now be moved to a different ventillater and they are going to try a setting that will assist him and not do all of the work. Fingers crossed this works well for him because that means we are on the path to no ventillater at all. Go Gabe, Go. We are still waiting for the final biopsy results...tap...tap...tap (that is me tapping my fingers on the table). The best news of the day is that Gabe looks the best he has looked in over a week. He has de-puffed quite a bit in the last 48 hours and you can really see his handsome little features again. I know I'm completely partial but he is seriously the cutest little boy I have EVER seen! I cannot wait to start dressing him in all sorts of cute, I mean manly (sorry Jesse), clothes. Well on that note, I bid you all good night. I am off to sleep on the awesome sort-of-mattress-airmat-thingy here at the Ronald McDonald House.

Wednesday, August 26, 2009

August 26, 2009

I don't know what to say right now. Shannon and I are very scared and don't know what the future holds. We try to stay as strong as we can yet we find ourselves falling down every now and then. We try so hard to stay as positive as we can in hopes that our positivity will keep our little man strong and hopefully it will. We feel absolutely powerless and helpless in a situation that is in someone else's hands. I can't even begin to tell you how much we love this little man and how much we want to bring him home. I try to stay strong, but I have my low points just like anyone does. I have to be honest. Every time I hear new news about Gabe and some new issue that arises, my hopes of Gabe living a quote normal life without issues begin to dwindle. Sometimes our hearts just ache with the thought that we may never get to bring Gabe home at all and that hurts your heart and soul beyond belief. I am not trying to bring you down or be pessimistic, these are just the feelings that are very real for Shannon and I. The night and exhaustion have a way of bringing you down at the end of a long day. However, I know that tomorrow is a new day and Shannon and I will wake up and put on our super suits and join Gabe in battle for another day. Ok. Let's talk about Gabe and how he is doing.

Gabe's day was pretty uneventful, the doctors just let Gabe have a day of rest without changing too much. The pain medicine team came down and suggested an increase in his morphine drip rate which will hopefully help him out. I did get to talk to the pathology team who said that they did NOT see cancerous type tumors on his liver, which is GREAT news. However, they are still unsure of what they truly are. They have speculated a couple of different things, but we will not discuss them until we are absolutely sure. We have found that we can speculate all day long and in the end all it causes is unnecessary worry. So we will wait for the final word before we tell you all. Gabe will be going down to get an MRI on Friday to take a look at his brain and abdomen. The doctors want to see how his brain is functioning and see if there has been any damage from everything that has been going on. They also want to take a closer look at his abdomen and most importantly look at the liver. We are praying that with the new information we can put a plan together to get Gabe healthy and home. Please continue to pray for our little Super G! Here are a few picture and video until tomorrow. Thank you for all the continued love and support, it means the world to our family.

Tuesday, August 25, 2009

August 25, 2009 HOME SWEET HOME !!!

After being away from home for a month Shannon, Kayla and I headed home for the first time. It could not have come at a better time. We are beyond physically and phsycologically exhausted and being back at home is an amazing blessing. I literally cried as I came down the street to our home.
I cannot even begin to thank the absolutely amazing firefighters of the Palo Alto Fire Department. They have been working non-stop, day and night to repair our aging home to make it weatherproof for our family. They completely replaced our leaking roof that had three separate leaks and I can't even begin to tell you how absolutely amazing it looks. As I came down our road I looked up at our home and I couldn't believe that it was our home. The roof looks incredible! As we pulled up we were greeted with absolutely amazing landscaping that made our home look like something out of a magazine. Then we went inside and were blown away again. They completely re-painted, re-sheet rocked and re-did everything inside. We know have a central air and heating system that will keep us warm in the winter and be able to keep us cool in the summer. When I mean cool, I mean chill a beer in the middle of my living room. Amazing! We even have new sky lights in the living room and in both bathrooms. No longer do we have to worry about that pesky mildew that ruins our bathrooms. Shannon and I were also amazed at all the new base board and fresh paint that made our home look so bright. On top of all this they cleaned it to a spit shine that would make a military drill sergeant happy. Here I sit at midnight once again feeling tired but happy, comfortable and thankful for all their hard work. I wish there was a word that was stronger than thank you. Thank you to all the wonderful firefighters that have transformed our home and our lives. You truly are amazing and I am so thankful to be able to call you all family. We are forever in your debt and will always remember what you have done for us.
I can't wait for Gabe to be able to come home and enjoy our new home. Gabe is hanging tough and continues to amaze us with his determination and will. The last couple of days have been challenging to say the least. I will try to make a long story as short as possible. After re-adjusting Gabe's chest tube two times and using the "draino", it is unclogged and working as it should. We sat down with our wonderful doctor "B" who informed us that they are planning on getting Gabe down to get an MRI possibly on Friday. He also told us that Gabe has a large amount of protein that is leaking out around his lungs. This fluid is beginning to form strands that connect his lungs to his lung cavity, which is not good. He will be consulting with the chest specialists who will hopefully give us a way to deal with this. Gabe is also very dependent on his steroids, which he doesn't like us to take away. Doctor "B" thinks that Gabe may not be naturally producing enough of his own steroids to keep him going so we will be looking at his adrenal glands to make sure they are working correctly. Of course this will all be assessed with his MRI. We are also hoping to start Gabe back on eating again at the end of the week, which we hope will somehow help the little man. We are still waiting on the results of his liver biopsy and will update you all as soon as we hear. Please continue to keep Gabe in your prayers. Thank you all and talk to you soon.

Monday, August 24, 2009

August 24, 2009 Post Surgery

I want to start off by apologizing for missing the last few days. We have been terribly exhausted and I just haven't had the energy to stay up late updating the blog. I am going to try and fill it out earlier in the day somehow, but thank you for all you patience.

Gabe is doing very well after his surgery! He has a nice 3" scar on his chest and abdomen that he can tell cool stories about when he gets older. We joke around saying he was in a knife fight with a surgeon and lost or he was scuba diving and was bitten by a shark. I'm sure we will come up with more. Gabe has been maintain his airway and still has two lungs that are not collapsing and the chest x-rays are looking great. Yesterday Gabe was a little unhappy and we couldn't see why until our awesome nurse "L" saw that his catheter was not working. She removed it and I could almost see an expression of relief. Imagine not being able to pee for a very long time, that can't feel good. Today Gabe had his right chest tube removed since they haven't been seeing any more fluid come out over the past few days and they don't see any on x-ray. They will continue to monitor his chest x-rays to watch for a re-accumulation, as we have seen Gabe do in the past. But lets hope its just that, past. Gabe's left chest tube on the other hand is giving us a bit of trouble. Gabe's left chest tube stopped putting out fluid suddenly and that kind of worried us. Then he started leaking the fluid from around were the tube goes into his skin. Poor little Gabe would have to be cleaned constantly to keep him from lying in it. Shannon and I strongly believe that the tube is plugged as it has in the past. We just asked if he could get a new one, but they have different plans. The doctors decided to pull the tube back a little bit which might have gotten it in a better position. This of course did not work. When they pull it back, it requires them to remove the stitches that hold it in, pull it back and then re-stitch it. Then with the new stitches it no longer leaked, which means its accumulating in his chest. They are now going to try and pull it back even further, which I know is not going to work. If it still doesn't work, they will then try to clean the tube out with a kind of "liquid draino". If that still doesn't work, then they will put in a new chest tube. Personally I think he is going to be in more pain and be at a higher risk to infection doing it their way. I think they should just do it one time and be done. But I'm no expert, I just like to fix things one time and not have to come back to it. Some people just like to do more work I guess. Shannon and I think this is going to end in a "I told you so".

Gabe has also started to puff up again just slightly. You can really see it around his. head and ears. Hopefully we don't start to go backwards again. Every time I start to see swelling I get a little pit in my stomach just thinking of what has happened in the past, but we are not going there. I will update you more tomorrow when we find out how things turn out. Here are a couple pics and video of him over the past couple days. Thank you for all of your prayers.

Friday, August 21, 2009

August 21, 2009

I am so sorry we left so many of you hanging on the edge of your seat waiting to hear how everything went. I have to say that Super G handled it very well and he is resting comfortably. He has handled everything so well that the doctors and nurses are referring to him as the little rock star.

Yesterday morning nurse "C" had a big job getting all of Gabe's "components" untangled and set up for the move down to the operating room. It was like watching one of those shows were they move a house from one location to another. Very impressive. Shannon and I can't even begin to explain how nervous we were, our stomachs were in knots to say the least. I found myself pacing back and forth around Gabe's bed while they were getting ready. Finally, a little before 12 p.m. the anesthesiologist and surgeon came to get Gabe. Suddenly we had all of these doctors and nurses come from everywhere to tell the surgical team how to care for Gabe. One doctor even said that if anything went wrong, the surgeon was in big trouble. Nurse "C" was on the surgical team like white on rice. She was telling them about all Gabe's little quirks and how he works. You could tell the surgical team was a little annoyed by all these people telling them how to do their jobs. It's just amazing to see how many people take Gabe's care so personally. It's like having extra moms and dads with Gabe everyday looking out for him.
At about 12 pm we wheeled Gabe down to the "special" elevator for the ride down to the operating room. At the bottom we gave Gabe a kiss and parted ways. Even our nurse "C" went down with us and you could tell she was a little nervous about the surgery.

The next four hours seemed to the longest of my life. Shannon and I tried to eat, but that didn't make the knots in our stomachs feel any better. We then sat outside for what seemed like an eternity At one point I told Shannon that my watch was broken and wasn't working right because only five minutes pass every time I look at it after what seemed like an hour. Finally they came out and told us that Gabe was out of surgery and headed back up to his room. They said that he did very well and that he was stable. The broviac catheter was successfully placed in his chest. The biopsy took a little longer than expected, the first two samples didn't work and they finally got a good sample on the third try. Under a microscope in the operating room, the pathologist said that what he was looking at didn't look like a cancerous tumor. Which is great news, but we don't want to get too excited because they said it will take a few days to get the final word. They did say that we could have a preliminary report by today. Otherwise it won't be until after the weekend.

Once we got back up to the room Gabe was lying peacefully sedated and sporting a new cool scar he can impress all the girls with later. Nurse "C" and the team were working like a Nascar pit crew putting Gabe's "components" back together and getting him all cleaned up. We didn't want to get too close for fear of interfering with the pit crew or getting hit by the flying equipment. The surgeon and anesthesiologist went over to nurse "C" and said that she was totally right about all the things she had warned them about. She told them that she tried to warn them and they should have listened.

We are now waiting with much anticipation for what they will tell us about the tumors and will update you a little sooner this time. Keep praying for little man and I will post up soon as we hear more.

Thursday, August 20, 2009

August 20, 2009 - THE BIG DAY

Today is the BIG DAY! We have been waiting for today from what seems to be before he was born. From that first time we saw the masses we always needed to know what they were. Today we will finally get our first chance. I feel like one of those Mt. Everest climbers that sits in wait at the bottom of the mountain for months just waiting for all the stars in the sky to align and everything is perfect for my chance. If everything stays on this course, Gabe will be going to surgery today. The plan is to have him prepped at 10;30 am and down at the operating room between 11:30 and 12 am. Gabe will have an open biopsy of his liver, during which they will take a small portion of one of the tumors. They will then place what is called a broviac line in his chest which will solve our vascular access problems. This line will give us a port in which to give meds, blood and take blood for testing. Unfortunately we will not get the results of the biopsy for two to three days. I think these next few days are going to be some of the longest in my life. Please pray for little man today and his big day. I will update you after he is out of surgery.

August 19, 2009

Today Gabe had another big day. I knew that today they were planning on switching him over to the conventional ventilator, but I had thought it was going to take place later at night. However, I walked in after lunch and they told me I was just in time to watch the switch. Panic! At first I didn't know what to think. I had many questions floating around in my head, the biggest one; was he ready? After talking to Doctor "P" she made me feel much better and the switch was made. I was pacing around Gabe's bed for what seemed like an eternity until he was hooked up to the other machine. Finally he was hooked up and the loud oscillator was shut down and Gabe was doing it. He was doing just fine and he was so comfortable he opened his eyes and gave us all a nice treat. Gabe loves the peace and quite offered by the normal ventilator. Gabe coasted through the rest of the day and that always makes us nervous. Like there is something he is waiting to drop on us but he did a great job all day. Nurse "C" took excellent care of Gabe and she made it her mission to make sure he was ready for the big day that was coming. Thank you nurse "C". Gabe had a wonderful night, probably glad he didn't have to try and sleep next to that jack hammer. We would also like to thank nurse "A" for finding another nurse for Gabe that was familiar with him for the night shift. Also a thank you to the other nurse "A" for switching from one kid to Gabe so that he could have someone that is familiar with his quirks and how he works.

Tuesday, August 18, 2009

August 18, 2009

Another day has passed and we are nearing Go Time. This morning we found out that surgery has been scheduled for Gabe on Thursday at some point. The goal is to continue to bring down his oscillator settings so that we may switch him to a normal ventilator by tomorrow night. He must be stable on the traditional ventilator in order for them to consider taking him, so we are praying that he keeps being strong. Today Gabe was being pampered by his nurse "C" who gave him the salon treatment. She washed his hair with some special shampoo and then styled his hair in a very grown up way. He looked like a little man and it made us all laugh. They haven't changed much with what they are giving to Gabe, so they are keeping the current cocktail going until after the surgery.

This afternoon we decided to spend a little family time together at the Ronald McDonald House and have some fun with Kayla. RMH is always hosting fun events for the kids and today they brought in "Furry Friends". A group that brings dogs and cats to hospitals and bring cheer. The kids were all out front getting to pet and walk the different animals around. Our dog could definitely never be considered for this type of duty. Kayla was a little unsure of all the animals and was much more comfortable just watching everyone. After this we went down to the activity room to play. Kayla had a great time painting some masterpieces. She also painted the floor, herself and then flung the paint brush at me and completely spackled me. It was very fun and now we have some lovely artwork to hang in our room. Kayla also made a little friend while we've been here and today the two of them found some musical instruments to make beautiful harmonious music with. Hopefully we won't find those things again.

Tonight I said goodnight to Gabe and left him with nurse "L". Nurse "L" tucked Gabe into some fresh sheets and I think he even cracked a smile when he got cuddled up in the new blankets. Thank you nurse "L".

Please continue to pray for our little Super G. We hope to have some answers by next week.

Monday, August 17, 2009


We just wanted to share a few pictures with you that we thought were amazing. Gabe is definitely getting skinnier but after seeing an x-ray of his bone structure, it really put how much edema he really has into perspective. Everyday Gabe undergoes numerous x-rays, the list is VERY long to say the least. We always joke around that he has had so many, that if you turned out he lights he would probably glow. Poor little guy. If you look at the x-rays you can see were his bone structure is and were his skin is. At this time he should be skin and bones, there should not be this big a gap between them. For us though Gabe is looking great compared to what he used to look like. I should also note that this is the clearest we have seen his lungs since the day he was born. Normally his lungs are in some state of collapse and look white since there is no air between them. But these x-ray show black since there is air in his lungs. You can also see the two chest tubes that are draining all the fluid out from around his lungs. Today nurse "L" kept Gabe comfy, clean and made sure he was only subjected to absolutely necessary procedures. She also makes sure it is as quite as possible around his bed, so that means no loud fathers tapping and talking loudly on the sides of his bed like a fish in a fish bowl. Tonight nurse "S" is taking care of Gabe and we know he is in good hands. Also forgot to mention we brought Kayla by this afternoon to say hello to Gabe. She normally just looks at him and then wants to go down stairs to see the model train. However, this time she actually wanted to hold his hand. It was so beautiful to see Kayla touching her baby brothers hand. I'm sure once he's home she will be so happy to have a real baby to play with and dress up.

August 17, 2009

Overnight Gabe continued to shed a few LB's. He's looking so much better and he even seems to be a little more comfortable. Nurse "L" is making sure that Gabe is only disturbed when he needs to be so that he can continue to get rest. Thank you nurse "L". Still haven't gotten Gabe his spa music hooked up but I'm working on it. This afternoon's x-ray was looking good and they have brought down the oscillator settings even more. He is requiring very little supplementary oxygen and they hope they can get it down even more. Doctor "P" hopes that we can have Gabe ready for surgery later this week. She is going to be calling the operating room and see when they have availability so we can get to the bottom of this. Also forgot to mention that when I saw his x-ray, you could also see part of his face and I was shocked at just how puffy he still is. Under all the edema you could see his bone structure with what seemed like an inch of fluid around him. Absolutely amazing. I will try and post a picture of it later. Thank you for all the prayers and I will update you later tonight hopefully.

Sunday, August 16, 2009

August 16, 2009

Gabe is doing a wonderful job and he is looking so much better. His lungs are still looking great and they have brought down the amount of oxygen they are giving him. They have also been decreasing the amount of oscillator support that they are giving him. Nurse "C" just turned him this morning and he handled it very well. Gabe put out a considerable amount of fluid out of his new chest tube and overall his fluid output is impressive. They are going to keep up the same medication combo since it seems to be working so well. If everything stays on course, Wednesday's surgery is looking like it could be a reality. Knock on wood. It seems that every Sunday something goes wrong, so all the doctors and nurses are referring to today as Thursday. Hopefully he falls for it. Will update you all later today.

August 15, 2009

Today was a really good day for Super Gabe. We came in this morning not knowing what to expect and were so very happy to see our little man was beginning to look like himself again. We are really beginning to see his little features again. Gabe had a great night and didn't give nurse "S" any trouble. During this mornings rounds they said they were going to keep Gabe's medications the same because they are starting to work really well. During rounds, doctor "A" said that there was a little fluid around Gabe's left lung. She wanted to get an ultrasound to see just how much fluid there really was since last time it showed more than the x-ray. When they did the ultrasound, they found a significant amount of fluid. Doctor "A" called for a surgeon to come up and place a new chest tube similar to the one on his right side. The surgeon worked with the ultrasound tech to get the tube placed in exactly the right spot. It worked perfectly and fluid began coming out immediately. They then repeated the x-ray and that's when we were shocked. Gabe's chest x-ray looked better than it ever has! It's amazing, he has two lungs that look very clear. Shannon and I were high fivin' in the NICU with all the nurses. Gabe continued to have a great day and we even got to see one of his little eyes open. Gabe was a little agitated and nurse "C" said we should bring in some soothing music for Gabe. So we are going to download some relaxing spa music on the I-pod and put the ear pieces close to his ears. We are now pimping out Gabe's crib with his very own stereo system. I'm anxious to see if this works. They say that if it works he will relax and they won't have to give him so many drugs. So we will give it a try it tomorrow. Hopefully Gabe will look even skinnier tomorrow and we will be on track for surgery on Wed. Keep praying for little man.

Friday, August 14, 2009

August 14, 2009

Today the new plan was approved by the team and they are now giving Gabe the new diuretic, Bumex in conjunction with his Lasix. So now, he is getting a diuretic every six hours. They also switched to the Albumen instead of the FFP. Gabe was looking a tad bit skinnier this morning and you could see it in his little lips, nose and left eye. However, after lunch today he was looking a little more puffy and they said that it could take a little bit of time before the new med kick starts his kidneys to produce more. We will keep our fingers crossed. Nurse "A" did a wonderful job keeping an eye on little man and she kept the plan running smoothly all day. Thank you nurse "A". Tonight, nurse "S" said she won't let Gabe get out of hand and we have all the faith in the world that Gabe is going to be just fine tonight. Hopefully we will come in tomorrow to find that Gabe will have gotten skinnier over night.

Shannon and I always feel butterflies in our stomach when we walk down that hallway to see our son, unsure of what we will find. This is becoming increasingly difficult over time and wears on us both. We feel this anytime we leave the NICU, even if for only a few hours. Tonight nurse "S" turned Gabe and it is always hard to watch because we never know how well he will handle it. No matter how many crazy things Gabe has gone through, watching his numbers fall is always hard for us to watch. It seems to just slowly chip away at our nerves and hearts.

Doctor "A" said this morning that she wants to see Gabe down in the operating room on Wednesday. Hopefully Gabe will cooperate and he will have a quit weekend with no hiccups. Thank you for all your prayers.

Thursday, August 13, 2009

August 13, 2009

Today Super Gabe was looking much better. He is slowly losing that fluid that accumulated so very quickly. We are beginning to see his little features again and it gives us more hope. His oxygen demands have gone down and his oscillator pressure is down as well. We are very excited to see our little man beginning to improve. We noticed that his lips are getting smaller and his eyelids don't seem as puffy. Tonight he was chewing on the breathing tube and seemed to enjoy this very much. Gabe also opened his eyes for the first time in about five days, which made our day. He looked right at us, unfortunately only his left eye could open since his right eye was still too puffy. Poor little guy looked like a pee wee pirate. He looked at mom and dad for about a minute and then you could tell he was tired of trying to keep his eye open, then closed it. Nurse "L" did a great job today taking care of little man and we look forward to her retuning from her trip and showing her how much weight Gabe's going to lose.
Tonight Doctor "J" said he is happy with how much fluid Gabe is getting off, but thinks it should be coming off a little faster. Gabe has put out about 850 cc out of his right chest tube in about three days, which is amazing. Since Gabe is still getting the high volume FFP (Fresh Frozen Plasma), Doctor "J" would like to change this to the Albumen. This would give us a little more bang with a lot less volume. Then he would like to add another diuretic on top of the Lasix, this will hopefully increase his urine output and get him skinnier, faster. Luckily his blood pressure is doing great, which will hopefully allow us to try this plan. Doctor "J" said he would like to get Gabe de-puffed as quickly as possible so that we may get him down to the operating room sooner than later, so that we may biopsy the liver. He thinks that the liver may hold the key to what is going on with Gabe and why he continues to have these setbacks. So tomorrow he will speak with the rest of the team and see what they think. I have the utmost faith in all the wonderful doctors at LCPH and know they are doing the very best for him.
Please continue to say prayers for Gabe and we will update you tomorrow with what they say.

August 12, 2009

We always walk into the NICU in the morning with great apprehension. As we turn into the doorway of his room we are always nervous about what we are going to see. Today as we came in, everything appeared calm and quite. Gabe had a great night and didn't give his nurse "B" any trouble. His chest tube continued to put out copious amounts of fluid throughout the night, which is exactly what we want it to do. His nurse "N" today was very pleased that Gabe was behaving himself and not throwing her any curve balls. One of the first things we noticed was that Gabes chest and abdomen were a bit smaller. His right ear was also shrinking and we could now see inside his ear canal again. The Angelina Jolley lips are gone and he can now move his lips and chew on the breathing tube, one of his favorite past times. By the time we left today Gabe's chest tube had put out over 700 cc of fluid, which is amazing. Unfortunately he is not peeing as much as we would like, so lets keep those pee pee prayers coming. They have also been bringing his ventilator setting down slowly and he is tolerating this very well. No other major developments today, which we are proud to announce. Hopefully tonight and tomorrow will be much the same.

Tuesday, August 11, 2009

August 11, 2009

This morning we came in to find Gabe having increasing difficulty breathing. His oxygen saturation was down, CO2 levels were rising and they were using significant pressure to keep his lungs open. The morning x-ray showed a significant amount of fluid around his right lung. They decided to get an ultra sound as well and this showed even more fluid than they could see on the x-ray. It was decided to place a new and different kind of chest tube this time. The old chest tube that was placed was in the right location it had just been pulling out slowly as his body continued to swell. A surgeon and radiologist worked together using the ultrasound machine to place the tube in the best location, right in the middle of all the fluid. They used a syringe to pull out approximately 30 cc of fluid and as they did we actually watched his oxygen saturation rise from 88 to 99 in matter of a minute. It was absolutely incredible! I was so happy, I told the surgeon and radiologist that if I had a beer I would give them one. Our nurse "L" worked so hard and we are so very thankful for her outstanding care for of our little man.
As I am writing this in the hallway of the NICU, Shannon just came out and told me that they just shot another x-ray and it shows that his right lung is fully open and expanded. The left lung is also showing great improvement. This is huge news for Gabe! Thank you for all your prayers and lets just keep praying for this kind of improvement. I will update you later as the day develops.

Monday, August 10, 2009

August 10, 2009

I don't even know were to begin. Gabe, Shannon and I have been through a pretty rough couple of days to say the least. We thought we might lose Gabe last night and we are still not out of the woods just yet. We are extremely scared right now and need all your prayers for little Gabe.

I will try to sum everything up as best I can without getting into too much detail. Over the past couple of days Gabe has become increasingly more puffy. Gabe was doing one of his normal oxygen de-saturations and needed to be suctioned. It was at that time that Gabe's left lung collapsed and he has been struggling to recover ever since. Last night things were not looking good and the NICU suddenly became a scene of chaos around the little man. I called Shannon and she arranged for the grandparents to drive up and get our sleeping daughter at 11 pm at night, so she could be with Gabe.

Gabe was having an increasingly difficult time breathing and his CO2 levels were climbing to a dangerous level. At that point the doctors took Gabe off of the ventilator and put him back onto the oscillator again. This was a huge step backwards for us, but at this point we really don't care as long as we keep Gabe alive. Gabe's head had also become very puffy and was not swelling in proportion to the rest of his body. They decided to do another chest x-ray and a ultrasound of his neck. This ultrasound was to look and make sure blood was draining from his head, which it was. But by chance they found a bunch of fluid around his right lung. They then decided to place another chest tube in his right side to drain the fluid that could be causing some of the collapse. Then there was the vascular access problem that we have been having for an untold amount of time. They have tried many times with many different doctors to get an arterial line placed with no success. Doctors tried late into the night with no success. We desperately needed this line to give blood products and to draw blood gases from, so that we may make adjustments to his ventilator and watch for trouble. Gabe would unfortunately not get this line until the following night. Gabe's puffiness reached what we thought was about as puffy as he could get. But we were definitely wrong about that.

We came in this morning to Gabe even puffier than he was the night before. We were very scared at that point. He was not looking good at all and his wonderful nurse "L" was working hard to keep him comfortable and breathing. Gabe's oscillator had to be turned up pretty high to keep his lungs inflated as they are being crushed by all his edema (puffiness). This increased pressure was making his right lung so over expanded that it was also pushing into his left lung cavity. Not good. The other scary thing was that Gabe's oxygen level that he was being given was already as high as they could go, 100%. But his body was only achieving 80-85% saturation. They were pretty much maxed out for what they could do for Gabe with the oscillator. This caused great fear for Shannon and I, because at this point there is not much left for them to do and some tears fell.

Throughout out the day Gabe has continued to put up a fight. Getting even puffier but never quitting. His lungs are starting to look better on x-ray and his oxygen supply was cut down to 76%, which is better than 100%. His oxygen saturation is now sitting about 91-93% before we left tonight and his CO2 levels are in a great range. While Shannon and I stepped out to finally eat Gabe was busy getting some new vascular access. Earlier in the day the anesthesia team came by and looked at Gabe and said that they would be unable to place any sort of line in Gabe since he was so puffy. But late in the day the cardiac surgeons would come by and give it a try and succeed. They were able to place a deep venous line in his left armpit. They were shooting for an artery and got a vein, but we will take it. Now Gabe no longer has to be poked in the foot every time they need to check his blood gasses. Our wonderful nurse "L" noticed Gabe had not been peeing as much as he should and placed a catheter in and that seemed to help. It appeared that Gabes body swelled so much that he couldn't even pee. Poor little guy! Thank you nurse "L". Gabe is getting a crazy amount of pain meds, enough to take down a small rhino I think. He is also getting a large amount of steroids to help him combat everything going on. Then there are the blood products and Lasix which were increased to help him get rid of all this fluid on his body. Hopefully we will come back tomorrow to a slightly deflated baby. They were also worried about infection, but he tested negative for any type of infection. But to be safe they went ahead and gave him the two most powerful anti-biotics that they have.

Shannon and I had to pull ourselves away tonight, literally. It's hard leaving him when he is in this state. But we are very comforted by the fact that he is with his wonderful nurse "B" tonight, who loves him like he was her own. As we left, nurse "B" was cleaning Gabe up and getting him ready for another breathing treatment with our wonderful RT, "J". He does a wonderful job keeping Gabe's airway open and has gotten Gabe's lungs inflated before and know he can do it again.

Please keep Gabe in your prayers. He needs it so much right now. Thank you so much.

Saturday, August 8, 2009

August 8, 2009

Frustration. Fear. Happiness. Just a few of the words that describe our normal day in the NICU with Gabe. Today Gabe had a little setback. Gabe has had increasing edema on his body and has gotten significantly puffier. Today the doctors discontinued the use of the Albumen that they had been using and are now just withholding any extra fluid. They are giving him large amounts of Lasix which is a diuretic, every six hours to help get rid of this fluid. Gabe had his normal suctioning and respiratory treatment today and it was all pretty routine up until this afternoon. As the anesthesiologist was looking at were to place a femoral arterial line, Gabe's numbers began to drop. The respiratory therapist and nurse called for emergency help and doctors came running from everywhere. They worked to re-oxygenate Gabe and after awhile they were able to stabilize him. They ordered a chest x-ray after the incident and thats when we found that Gabe's entire left lung had completely collapsed again. I was very nervous during the whole ordeal and then it was followed by frustration, then thankfulness that he was still going strong. Unfortunately since he was so unstable they decided again to not put a arterial line in. They said that depending on how he does through the night, they would try again tomorrow. Shannon and I feel like we can never leave his bedside, even though there is really nothing we can do. This whole experience seems to wear on us more and more everyday. Please pray for our strength.
Today we got Kayla back from Grandma and Grandpa and we were so happy to see our little bean as we call her. She always puts a smile on our faces and makes us laugh, she is definitely a comic relief. Tonight she asked Shannon and I, "Is Gabe's ouchy all better?" and then stated, "I want to go home now". We sure wish Gabe's ouchy was better and then we could all go home, together. Someday soon we tell her.
Tomorrow is a new day and hopefully Gabe's lung will be re-inflated and he will have lost a little weight overnight.

Friday, August 7, 2009

August 7, 2009

It was a bad night and rough morning for Gabe. Last night everything was going well and then after having one of his routine breathing treatments, he didn't recover like he normally does. His oxygen saturation's took longer to come up and he was acting very uncomfortable. He started breathing faster and his CO2 levels started rising and they got pretty high. During rounds this morning they discussed Gabe's respiratory issues and changed his ventilator setting back to were the ventilator is doing all the work, instead of him initiated the breathing. This seemed to make him more comfortable. The other issue that Gabe is facing is the fact that he has put on a significant amount of edema and got even puffier than last night when I left him. So today they are trying super hard to get all this fluid off. They have also increased his Lasix to every 6 hours instead of every 12 hours, this should hopefully get the fluid off a little quicker.

Unfortunately today they have had a hard time getting vascular access in the form of an arterial line to give Gabe the necessary blood products like the albumen and whole blood. They also need this line for labs and blood work. They have poked Gabe so many times they are having an increasingly difficult time getting the necessary lines. Today they had an anesthesiologist come up with a mini ultrasound machine to place an arterial line. She was able to get the line in however there was a problem. It wasn't working that great, but the bigger issue was the fact that there are only two arteries and they can be damaged. What this means is that we have already used one of those arteries heavily and it stopped working which could mean a damaged artery. If it is damaged it will heal over time and is not permanent. However, they stuck the new art line in his other artery and it is not working that well. This means we could cause damage if we leave it in and if both arteries are damaged then no blood can get to the hand and then he could lose his hand. Not something we want to even take a chance with, so the art line was removed to keep his hand safe. Fortunately we were just able to get an IV in his left leg and he is able to get the blood that he needs. Hopefully it will continue to work because Gabe is notorious for IV's going bad. They are trying to get surgery to come back up and try and place an arterial line in one of his femoral arteries. However, they don't seem too hopeful of these sights and they have mentioned the possibility of what called a "cut down". It's just like it sounds, they cut into him to get to a suitable artery. Not fun to say the least, but at this point we will take anything we can get to help Gabe. We really don't care as long as they have what they need to give him what he needs to keep him alive.

Shannon came back this afternoon after dropping Kayla off at Grandma and Grandpa's house and was just in time to meet with Oncology, the cancer people. They were there to review the CT preliminary results with us and we had some good and bad news. The good news is that the tumors or masses don't look like anything they are used to seeing that are cancerous type tumors. However, they cannot give us a definite answer until they have a more complete biopsy result. To us this is good news since it doesn't look like cancer. The other good news is that the CT of his lungs looked good, so to speak. There are still areas of collapse and he still has fluid around his lungs, all which we already knew. The good news was that structurely there are no obvious deformities to his lungs which would present a larger problem. The respiratory doctor came down and said that his lungs are smaller, but that could be because he has so much edema and swelling that it hasn't given his lungs much room, even before he was born. They said they could only tell the extent of the smaller lungs only after his swelling is down and he is off the ventilator.

The bad news is that there are actually eight tumors instead of the two we previously thought. They are on both his left and right lobes of his liver, with the largest one being on his right lobe. This is scary news for us, since everything seems uncertain and we have no definite answers. We are not going to jump to any conclusions and take things one step at time. I will update you later tonight on what happens during the rest of the day. I just wanted to get this all down before I become too tired to remember.

Thursday, August 6, 2009

Kayla's New Bathtub

Our room at the Ronald McDonald House doesn't have a bathtub, so we needed to improvise. Kayla does not like taking a shower! We tried several different times and several different ways with the same result. Kayla screaming and crying trying to escape, much like trying to give a cat a bath. I even tried taking a shower with her, she squirmed so much I almost dropped her. So we decided to improvised, Kayla and I made a trip to Home Depot to try and solve the problem. I hope you enjoy the video.

August 6, 2009

Today was a win for Gabe! He kept on fighting and his lungs looked good enough to go to CT today. They were able to get him down at about 2 p.m. today and he was in and out in about an hour. Not too bad. Shannon said that it was amazing just how much was involved in moving the little man, she said it took a small army to accomplish everything. Unfortunately we will not know the results of the CT scan until tomorrow and even that will just be a preliminary report. The doctor who has the final say if you will won't be back until Monday. The downside of today's little adventure came at a cost of Gabe getting quite a bit more puffy. They had said that it could be a result of them having to paralyze him for the CT procedure. The doctors have put Gabe back on the Albumen instead of the FFP which they have used in the past with good success. They are also giving him Lasix along with the Albumen to help get rid of the fluid. Hopefully I will return in the morning to find the little man a bit smaller than he is now. The occupational therapist came by today to give Gabe a little massage and to move some of his joints again. They also made a special splint to hold Gabes hands straight since he is unable to move them since he's knocked out most of the time and isn't moving them. He likes his massage sessions and seems to relax enough that all his vital signs improve. I will have to get a video of him making faces as he gets his arms massaged, its pretty funny.

Gabe's night nurse "B" is hooking Gabe up with his old spaceship bed again. Gabe loves being in this bed because it is so much more quit and much more peaceful inside when it is closed up. They planned on moving him over to the new bed at around midnight. I decided that I should probably get some sleep instead of waiting around. I know that he is in good hands tonight and I don't have to worry about to much. I will update you all in the morning. Here are a couple shots of the little man all puffy, just to give you an idea of how much he fluctuates in a day. I have also attached a video of how he gets suctioned. Gabe is a man of regularity. He likes to scare the nurses about every hour by getting his breathing tube plugged up with secretions which they then have to clean out before his oxygen saturation drops too low. This is what he endures about every hour like clockwork.

Wednesday, August 5, 2009

August 5, 2009 Update

Gabe just had his x-ray and they found that all that hard work and additional ventilatory support worked and we got both his lungs in a better place. So we thought that it was go time and we were off to CT. Wrong! Unfortunately after all that they can't get an anesthesiologist that is available! Arghh!!! I can't believe this. It is very frustrating to say the least and everyone at Gabe's bedside shares my feelings including our doctor. I just can't believe in this whole hospital there isn't one that can do this procedure. I can't dwell on it and have to move on. So now the plan is to get him in first thing tomorrow morning. I shared my concerns with the doctor about how every time we postpone something by even a couple hours we seem to miss our window with little Gabe. When we tried for an MRI, his lungs collapsed and that never happened, then it took forever for him to recover from that. Then we try for a biopsy and his lungs collapse. Now we try for a CT and now you see my concern. I'm not alone on this one, everyone including the doctor feel the exact same way. So we will keep our fingers crossed and say a little prayer that his lungs stay healthy overnight and we will have no problems in the morning.

I did get a little training on neonatal massage and therapy, then got to work with his arms. I was able to get his arms to relax and actually lie by his side, which I haven't seen in a long time. We also started to notice that Gabe was starting to swell up again, this is from them paralyzing him earlier so they could get the right chest tube in. But he will shrink again. Please keep your prayers and thoughts coming Gabe's way. Thank you all again for everything.

August 5, 2009

Gabe has a lot going on this morning and today. This morning they were moving Gabe and his left chest tube was dislodged which will probably need to be replaced since it was draining fluid. However, they want to give it a chance and see what happens on the next x-ray. Then they placed a new chest tube on the right side. Poor little man is a trooper and is doing quite well considering what is going on. They wanted to get an CT at noon, but his lungs are not in tip top shape. The lungs are open but there are small areas of collapse and the team wants them to look a little bit better. So they are giving him some vigorous breathing treatment in hope of opening him up before the next CT opening at 3 p.m. We will find out shortly. Sorry about not posting for the last two days. I write the post before and then just copy and paste it to the blog, but I barely have time to use the restroom let alone update the blog. I'm going to try to start waking up extra early to do it before Shannon and Kayla wake up in the morning. Here are a few pictures from around Gabe's bed I snapped the other night. Enjoy and I will update you all later. Let pray that we get down to CT and show them that Gabe doesn't have any structural problems or lung issues and that he just has lots of goobers.

August 4, 2009

Today was a strange day. It didn’t exactly go as I had hoped and now Shannon and I feel scared. This morning his chest x-ray was still not looking great. His left lung is still collapsed and his right lung didn’t look that great. The pulmonary team came in and told us that they were recommending that Gabe get a CT as soon as possible. The biopsy of his liver is now taking a back seat. They had previously said that they didn’t see any structural issues during the bronch that they could see. However, that only went so far into his lungs. They want to do a CT to make sure Gabe doesn’t have any other lung disorders that we may have overlooked. They also mentioned that they may need to do another bronch after the CT. Then they discussed the possibility that they may want to also want to do a lung biopsy as well! The doctor mentioned that she wanted to see if they could get the two different surgical teams in the same operating room to perform one procedure after another so that Gabe wouldn’t have to go through it two separate times. To me that sounds like a lot for a kid who is just having trouble keeping his lungs open at this time.
The next scare for me came when they started tossing around the term chylothorax (probably spelled that wrong). Basically this is a condition in which fluid from his lymphatic system leaks into his lungs. They have been apparently finding lymphatic fluid in his chest tube drainage. Then I found out that they had tested for it and I had no idea. This made me a little frustrated to say the least. Apparently it is debatable whether or not he has this condition. I won’t get into that. What I can tell you is that for it to be considered a chylothorax, the percentage of lymphocytes out of the chest tube must be greater than 60% and Gabe is at 97%. Also the percentage of protein in that must be about 1.6 or something and he is at 3.7. We flat out asked if he has this or not and they still will not say. I won’t get into the whole entire thing, but I will tell you that basically everything he is dealing with is all tied together somehow. However, we don’t know what started what. It’s kind of like what came first, the chicken or the egg?
Then the day nurse gave me a little three page information packet about what hydrops is and everything about it. This was just the topper that sent me into worry. It wasn’t exactly fun to read and left me feeling very scared and depressed about what little Gabe is up against. Shannon and I will be very strong, but sometimes it catches up with us and we have our moments. But then we pick ourselves up and start the next day getting to see our beautiful little man.
As I left the NICU tonight Gabe was resting comfortably being taken care of his wonderful nurse “L”. His eyes were open and he was watching me as I talked to him. I even got to change a poopie diaper, which was my first one. I guess you can say this is good news, since they were worried that things were not moving through him. But he is related to me, so they should start really moving. The poor little guy has another IV in his coconut which always makes me feel bad. They have also been unable to start another ART (arterial) line in him which he desperately needs. They have been trying for almost two days now and when I left they were going to be trying again. I hope they have more success tonight.
Tomorrow is another day. Please continue to keep little Gabe in your thoughts and prayers.

I Wonder Who Gabe Looks Like???

Shannon found a picture of herself just after she was born and we were shocked at what we saw. There is no doubt that Gabe looks like Shannon. You be the judge. Check out these pictures.

Monday, August 3, 2009

August 3, 2009

Shannon and I arrived at the hospital early this morning anxious to see what was going to happen. After reviewing his current status they decided to postpone the surgery for a couple of days to allow his left lung to re-inflate. We are not upset at postponing the surgery because we want to give Gabe the very best chance at success. However, we are bummed that his left lung is yet again collapsed. So today's plan is more suctioning and ventilatory support. We will update you later today with his progress.

After this morning’s cancellation, Shannon and I were completely exhausted and we retreated to our room for some rest. Shannon got some well deserved sleep and I got some breakfast and headed back to the hospital to hang out with Gabe. Since he no longer has a PICC line they have to poke him every time they need to get a blood gas. Unfortunately last night they were unsuccessful at re-establishing the PICC line and decided to wait for morning. This morning was not much better for Gabe, they poked him a lot more and ended up with a line that appeared to work but now no longer works. So this will be addressed again tomorrow. Gabe’s little body has been poked so many times that he is running out of places to put these lines in. They can’t just keep placing lines in areas they have already had them, they have to give that area time to heal and mostly that area just won’t work even if you tried. The doctor with the surgical team mentioned that since Gabe will be needing an arterial line for pretty much his entire stay they will need something that they can depend on to give vital fluids through. So he said that they may surgically place a line that goes into his chest and wouldn’t need to be replaced like the ART lines need to.
Gabe continues to get Albumin to help control his leaky vessels and Lasix to help him get all that fluid off faster. Also, he is receiving breathing treatments to help break up the secretions in his lungs that have been giving us so many problems. In conjunction with these breathing treatments Gabe is getting vigorous suctioning to help get stuff moving out of his lungs. Hopefully tomorrow morning we will see some good results. Shannon and I hope to see a skinnier baby with some good looking lungs in the morning.
Tonight, Shannon and I headed back to pick up Kayla from grandma Aguilar and then went and had dinner with grandma and grandpa Reynolds. We brought Kayla back with us and we are so happy to have our little girl back with us. Having that little smiling girl sure makes things in life look so much brighter. No matter what, she always smiles and I think it’s beginning to rub off on us. Shannon and I always try to smile while were with Gabe and be positive no matter what is happening. He knows when we are there and he can always tell when mommy is touching him and talking to him, it’s amazing to see. We try to keep our time with him as positive as we can although it may be hard at times.
Thank you for all your prayers and support.

Daddy's Turn To Hold Little Man !!!

It was absolutely amazing getting to hold my son for the first time. Thank you nurse "L"!!!

August 2, 2009

What The Heck Just Happened?

That was the question that Shannon and I were asking ourselves on the way home from an incredibly crazy day at the hospital. This morning Shannon spoke with the doctors about tomorrow’s surgery and they said everything was a go so far. Then we got Gabe’s morning x-ray back which did not look good at all. In fact his entire left lung had collapsed yet again and they thought that the surgery would be cancelled. This was very disheartening, since we were so looking forward to getting some answers as to what is going on with his liver. Then we found out his arterial line was no longer working which is a pretty big problem. This is the line that they draw blood from every hour or so to check his blood gas which they then use to make changes in ventilator settings and other things. They then tried repeatedly to re-establish a new line with no luck. The poor little guy was doing the mime scream the whole time and we felt so bad. They finally decided that they would just continue to draw blood each time the traditional way through the night, which means he’s going to get poked repeatedly. They are going to leave the last few possible sites available to the surgical team tomorrow who will be able to do it with Gabe totally paralyzed making it much easier. Then later another x-ray showed that his lung had improved slightly and they said that things were looking like they may do the surgery again, but only time would tell. Poor little Gabe is also beginning to get puffier as he puts on more edema. They began giving the blood product Albumin which keeps his vessels from leaking fluid out into his body and also will be giving him the Lasix which will help him get rid of all that fluid faster. Poor little guy.
We had Kayla with us up until this afternoon, then we raced to the grandparents house to drop her of for the night and then raced back. When we got back to the hospital we were excited to hear from nurse “L” that I would be able to hold Gabe for the first time since they had to move him to another bed. This is the bed that they will be using if they decide to do the surgery tomorrow as planned. So after nurse “L” spent about 30 minutes moving stuff around and setting up the move, it was my turn. For the first time I got to hold the little man. I can’t even begin to describe just how wonderful it felt. I can remember thinking, I am actually holding my son and this is real. It suddenly made everything we have gone through feel worth it. This was the best moment thus far for me. Then things got sketchy! After holding Gabe for about an hour, it was time to put him back on his new bed. We now had a new nurse who was unfamiliar with Gabe’s antics. So when they went to move him, he gave us yet another scare that made me need to change my shorts. Suddenly he started changing blue and his oxygen saturation dropped to 5, that’s right 5% and his heart rate dropped down to 60. They began manually bagging the air into his lungs and called for all the doctors, which came running. Shannon and I are almost in tears looking at our little Smurf colored kid thinking this is going to be the last time we get to hold him. But luckily Gabe is a fighter and never gives up, bounced back to normal within minutes. Shannon and I agreed that we have seen our little man turn blue so many times that we think we have had enough. What had happened was during the move a tube that supplies air from the ventilator to his lungs became dislodged and he was no longer getting air. I told the doctors that I had some zip ties and hose clamps down in my truck that I would be willing to donate them so that we would not have to go through that again. They thought I was joking but I was totally serious and will bring some tomorrow.What a day! So as of tonight, his left lung has improved enough to get him out of the no way category to a strong maybe category for surgery tomorrow. Only time will tell and tomorrow morning’s x-ray which is at 6 am will let us know. So we will be there waiting anxiously. Keep praying.
On a separate note I found out that today the wonderful firefighters of the Palo Alto Fire Department were over at our home ripping the roof off in preparation for a new one!!! We can’t even believe this, they are truly amazing. Shannon and I had no idea what we were going to do about this upcoming winter. I was going to be putting a new roof on the house this summer along with new heating and air conditioning but life changed suddenly and we had to put everything on hold. We then decided that we would just put tarps over the roof for the upcoming winter and get more space heaters. However, the wonderful firefighters that I work with again amazed us by telling us they were going to be replacing our roof and put new heating and air conditioning in! I can’t even begin to tell you what an incredible relief this is for Shannon and I. No more leaking roof to worry about. No more freezing winters and hot summers to worry about. We wish there was a stronger words than Thank You. THANK YOU to all those that have worked so hard to help us out! We can’t even begin to tell you how truly thankful we are for what you are doing. Everyone we tell the story to begin to cry and can’t believe there are people like those great firefighters that I am so proud to say I am a part of. Thank You all!!!!