October 9-12, 2009

Here we go again, leaving you all hanging for days. We've had a couple of busy days and just haven't put the time into sitting down and updating you all. Our apologies for that.

I'm happy to announce Gabe's UTI is finally gone, and he seems to be returning to the happier little guy we had become accustomed to before this evil UTI took him over. In the last few days Gabe has had his usual ups and downs of numbers being off here and there, and the vent needing to be adjusted, sometimes several times a day, but for the most part it was a pretty uneventful weekend for Bubba. They have already gone up on the Octreotide (medication we are hoping will heal the Chylothorax) several times, becuase so far it has not made a difference, and Gabe continues to put out rather large amounts of fluid from his chest tubes. We are praying this medication starts working soon.

We are going to sit down with one of Gabe's doctors next week for a serious chat about where we go from here if the Octreotide doesn't work. Does he think with time Gabe can heal on his own? The scarriest part of this whole "adventure" is no one can say for sure what the outcome is going to be. We know that Gabe is a fighter, he has most certainly proven that, but if this Chylothorax does not heal, it's not something you can live with. The other big question we have is about his lungs. They have been compromised by the pleural effusions (fluid around his lungs) and his thick edenemous chest walls for so long that they have not been able to grow into healthy fully functioning lungs. Also, being on a vent for almost 15 weeks, and who knows how many more, causes damage too. It breaks my heart to think about these things and I try to just enjoy my son and not worry to much about the things I have no control over, but they are always in the back of my mind. I can't imagine life without my Bubba, but I know we are still not in the clear. I hope and pray that Gabe will continue to fight, and that with time his body will heal and we will be able to get him out of that NICU and home with us, where he belongs.

Thank you all for your love, support and prayers. We are blessed to have so many amazing people in our lives.

October 8, 2009

Today was Jesse's second day back at work, and may I just say, I have a whole new respect for working parents. How the heck anyone gets out the door looking presentably disheveled (let's face it, once you enter parenthood you never quite look the same again), gets their kid(s) dropped off at daycare, and makes it to work by 8:00 am, is completely beyond me. By some miracle Kayla and I actually made it out the door on time this morning. However, after hitting traffic on Hwy 9, getting gas in my beast of a vehicle, dropping Kayla off at Grandma and Grandpa Reynolds' house, getting stuck in traffic on 280 (took me 30 minutes to go 1-1/2 miles), stopping by the fire station to get the hospital parking pass from Jesse, circling the itty bitty hospital parking lot looking for a place to park my Yukon XL, and giving up and heading to valet parking, I FINALLY made it to Gabe's bedside by 11:00 am. Holy Crap! Talk about feeling disheveled. Seeing the cute little completely-wide-awake-and-happy face that greeted me as I walked through the door to NICU room 4, made everything better.

Although Gabe did get another fever last night, for the most part he had a pretty good evening. When I arrived this morning (practically afternoon) Bubba was chilling out with Nurse "G" staring at his mobile. He still looked puffy, but better than he had earlier in the week and I was so releaved to see my happy little boy instead of the wild man that had taken him over for the last week. Soon after arriving, G nodded off, so we just sat in silence together. G snoozing and me holding his hand and head. He had one desat episode this afternoon, where his numbers got pretty low, but he recovered quickly and went back to sleep. Gabe still has a lot of secretions which cause him to desat if you don't get them cleared out of his lungs (via the ET tube) quick enough.

This afternoon we had a Care Conference. This is a time for us to sit down, away from the bedside, with a Dr, NNP, nurse and our social worker to discuss Gabe. The main focus of today's conference was his Chylothorax and the fact that it does not seem to be healing on its own. Gabe has been NPO (medical instruction to withhold oral food and fluids from the patient) for five weeks, and although at one point we thought his pleural effusions (fluid around his lungs) were beginning to dry up, they aren't and his chest tubes have actually been draining a lot of fluid over the last two weeks. The doctors think it is time to intervene and try a drug called Octreotide to try and heal Gabe's leaking lymphatic system. This drug has been used successfully with other Chylothrox neonates, and there are even reports of it working within three days for some patients and taking up to a month for others. The reason we did not try this right away is that it is a drug, and all drugs come with side effects, so they felt it was best to give his body a shot at healing on its own first. Even though there are success stories with Octreotide, there are also reports of it not working at all for other kids. I'm really hoping Gabe can be added to the success story list. We also discussed his "detour" this last week, and the Dr feels it was all associated with the UTI. I really hope she is right becuase that means once the UTI is gone Gabe will start moving forward again. They are still slowly chipping away at his vent settings, and once he is feeling better will go back to the sedation wean. Once the Chylothorax is healed, and Gabe no longer requires FFP to replenish the Albumin lost from his "leaking," the hope is that he will begin to slim down even more and his chest walls will get thinner allowing his lungs to get stronger and then...we can start talking extibation. Also, once we are sure he is no longer leaking Gabe can start eating again. We are anxious to see how this Octreotide works. If it is successful and heals the Chylothorax (leaky lymphathic system causing the pleural effusions) then I think we will start down a very exciting path. One that hopefully only moves forward. We still have a long way to go and as we've been told several times "Christmas is nice in the NICU." It's a little depressing to think about still being there come the New Year, but it means Bubba is still with us, and he is most certainly worth the wait.

October 6-7, 2009

It's a bit of an understatement to say G had a rough day yesterday. Wow! What a day it was...

After a somewhat peaceful night, and a little bit of an agitated early morning, Gabe was resting pretty comfortably when I arrived around 9:30am. Then all hell broke loose. I can't remember exactly what time it all started, but I can tell you that the madness lasted for hours and didn't end until about 6:30 pm. So Gabe woke up from his morning nap, in a not so fabulous mood. He wasn't happy awake and he wasn't happy asleep. Nurse "B" and I tried all of the usual calming tricks, but none of them seemed to work. We had some success wacking the side of the Boppy (Gabe like's motion, it calms him), but pretty soon even that didn't work. He got fussier and fussier until he had himself worked up into such a tizzy that even morphine and ativan didn't help. Arms and legs were flailing every which way; at times he was screaming (silent of course); and then the fever started. Gabe runs warm and is known to get fevers quite often. It's just one of his many quirks, or Gabe-isims, as Nurse "A" refers to them. If you notice him heating up you better get the blankets striped off and start cooling him, or else. We did just that, but didn't seem to make a difference and the fever kept climbing. He reached 39.2c, which I believe is around 102ish F. Whatever was bothering Gabe before was not worsened by the high fever, and now he was agitated becasue he was hot and was getting hotter because he was agitated and flailing. The final results were still not in, but it did look as though he had a UTI. If this was truly the case then this horrible day was probably due to the pain associated to the UTI. If it turns out he does not have a UTI, then I don't know what the heck was going on. I so wish I could have scooped Bubba up in my arms and bounced him around the room, mommy's always make everything better, but I couldn't. I just had to sit there and watch him go through all of this and it was heart breaking! I'm not sure what finally calmed him, but around 6:30pm Gabe finally relaxed. I was physically and mentally exhausted from the day, so I can't imagine what G was feeling like. I stepped out to get some dinner and when I returned G was snoozing comfortably. Thank God!!!

Gabe had a good night, and so far has had a good day. He is once again dumping a ton of fluid out of his chest tubes, which has caused his albumin levels to plummet. Yesterday they were 2.5 and this morning they were 1.9. Dr "B" wants to see him at 2.4 or over. That seems to be the magic albumin number for hydrops kiddos. Because of this drop they have upped his FFP to every six hours, instead of every twelve. Fingers crossed this does not make him puff. He has looked puffy over the last few days. NNP "N" did say that the puffiness could be associated with the UTI. It could be part of the infectious process. Let's hope that's what it is and will start to go away with the infection. Gabe has had good blood gasses today and they have been able to wean a little on his vent settings. Over the last week G seems to have taken a detour off the "right" path that he finally found a few weeks ago. Let's hope that detour is over and Gabe will start moving forward again.

I'm still exhausted from yesterday! What an adventure we are on...

October 4-5, 2009

After a rough week, Gabe had a pretty darn good weekend. No major issues or agitations, like earlier in the week. Justs lots of sleep and happy awake times. Unfortunately....this "happy" trend did not last. Late Sunday night Bubba became a wild man! He started his crazy retracting (taking lots of fast shallow breaths), apendages were flaling, blood gasses were out of wack, he had a fever that reached somewhere around 103 degrees, all of his PRN's (extra doses of sedation) were used plus some, and still nothing could be done to calm him down. X-rays were taken of his lungs and abdomen, but they all looked fine. A septic work-up was done to see if he might have a bug of some sort, and although the official results are not yet in, it looks like he has a UTI (urinary tract infection). I have had several of these in the past, and let me just say, OUCH!!! My poor Bubba! As if it's not bad enough to have two chest tubes, and ET tube and everything else, he now has to deal with the excruciating pain of a UTI. Antibiotics were started right away. When adults receive antibiotics for a UTI they are laced with a numbing agent, which takes effect quickly and makes the pain go away. This however, is not the case when it comes to UTI treatment in children, and this is why Gabe has completely maxed out all of his pain management options in the last 24 hours.

Gabe has been agitated all day. Not as much of a wild man as he was late last night and into the wee hours of the morning, but obvisously not a happy camper. He didn't want to be touched, required higher vent settings, and was having a "terrible horrible no good very bad day." To top things off, Jesse reported that G looks puffier, and his right chest tube doesn't seem to be working. In hopes of de-puffing him, they are going to up his Lasix dose, and as for the chest tube, it may end up getting pulled and replaced tonight.

It breaks my heart to know my son is going through all of this, and there isn't a darn thing I can do about it. There I was snoozing away last night and my child was writhing in pain. It wasn't until I received a call at 6:30 this morning that I knew what was going on. When I left last night Gabe was wide awake and totally content watching his rattle that we have suspended over his head. It's such a helpless feeling.

Here's to hoping tomorrow is a better day for G. I am sending him all of my super mommy powers.

FYI, the above picture was taken yesterday when he was a Happy Boy.

October 3, 2009

I am happy to report, today was a much better day for Super G. After a rough week Gabe spent a mellow day hanging out with Nurse "G." We popped in to visit for a bit this afternoon and Gabe got to meet some very dear friends of ours.

Bubba was doing so well today they were able to wean on his vent settings. His potassium was on the low side this morning so he received two potassium boluses throughout the day. His Albumin levels are going back up and his puffing from the FFP is going down.

It was great to see Gabe looking like himself today, and we are so happy he had such a nice quiet, uneventful day.

October 2, 2009

Shortly after blogging last night I called to check on Gabe and learned that he was still not doing very well. The improved condition he was in when I left, apparently didn't last for too long. He was extremely agitated, was retracting (lots of quick shallow breaths) and his numbers were not sitting as stable again. Nurse "S" pulled all the tricks out of the bag, but nothing seemed to be working. After a good CPT (chest physical therapy) and some PRN's (extra doses of morphine and/or adevan) he finally started to calm, but was still not himself. Earlier in the day Nurse "G" was having some trouble with Gabe's PICC line. Come to find out the line had become clotted, meaning Gabe was not receiving any of the drips running through that line, and the drips going through that line were his Morphine and Versed. This means that the majority of G's issues over the last few days can most likely be attributed to the fact that all of his sedation and painkillers were cut off and he was having major withdrawls. Poor baby! The PICC line was pulled and an IV started to temporarily run his drips through until a new PICC line could be placed in the morning.

When Nurse "A" arrived this morning Gabe was doing much better and was resting comfortably. Unfortuantely he did look puffier then the day before, so it was decided during rounds that his FFP would be changed to every tweleve hours, instead of every six, and it would be chased by Diurel (diaretic). This is the concoction Dr "B" came up with, which successfually kept Gabe from puffing when he needed FFP. Unfortunately they were not able to get a new PICC line in, however they were able to place a deep IV, which will work for now to run his drips through. Gabe had several good blood gases so they were able to wean on his vent settings. They are still not down as low as they were at the beginning of the week, but they are lower than yesterday. I think the combination of stopping G's hydracortizone wean (and actually going up a bit), cleaning out his chest tubes, tweaking his vent settings and running a new line for his drips, has finally helped Gabe to get back on track. He spent the day hanging out with Nurse "A," snoozing and checking out his surroundings. We took today "off" and enjoyed hanging out with some friends that came into town. We look forward to seeing Gabe tomorrow. We miss him so much if we don't see him, but it sure does feel good to spend a day at home.

October 1, 2009 - Happy 3 Month Birthday

I wish I could say Gabe's 3 Month Birthday was a nice quite day, but unfortunately I cannot. Poor little Gabe did not have a very good day.

For the last three weeks Gabe has been pretty stable, and having many more good than bad days. Starting Tuesday afternoon, G started to show a few signs of instability. We weren't sure if he was just having a funky afternoon (quite often he is agitated in the afternoons. We call it his witching hour) or if something bigger was going on. When I arrived to see Gabe around 10am on Wednesday he was retracting (taking lots of quick shallow breaths) a lot, his respitory rate was high until late afternoon, he was requiring extra oxygen to keep his O2 sats where they usually are on room air, was desating more often (like he used too) and was taking longer to recover when he did desat. Gabe just wasn't himeslf although, other than his little desat episodes, all of his numbers looked pretty good. Today however was a whole different story.

When I arrived this morning, Gabe just didn't look as good as he ususally does. He was very squirmy, was requiring more oxygen then yesterday and his numbers were not very stable. He kept desatting and had trouble recovering without assistance. I also thought that it looked like Gabe was puffing a bit. His Albumin levels have been low so he has been receiving FFP (blood product) every six hours. This has been known to make him puff in the past. In rounds I learned that his Albumin was actually up since yesterday, although still low, so the FFP treatments would continue. I suggested chasing his FFP with Diurel (a diaretic). A concoction Dr. B found worked very well and kept G from puffing. Dr V said she would try this if he continued to puff (luckily, thus far he was not). His chest tubes hadn't put much of anything out and the morning x-ray looked a little hazy and did show a bit of fluid on his left side. In rounds we mostly discussed what could be causing G's bad day. Clogged chest tubes could be one thing; the hydracortizone wean could be part of it (in the past hydracortizone weans have brought his spiraling backwards); and there was one other factor they thought could be involved in his changes over the last couple of days but I am so fried from the craziness of today I can't remember what it was. They were able to get the chest tubes cleared out and pulled off 20 cc's from his right side; they stopped his hydracortizone wean and actually went up on his dose a bit; they went up on his vent settings; and he received some blood because his numbers were a little low there too. After all of these things were done he was doing a little bit better, but still not Gabe, and still not looking that great numbers wise. At this point I was starting to get really worried that there was something larger going on that we were missing. I stepped out for about 30 minutes to pump, and when I came back in Gabe was on his tummy, his numbers looked fabulous, he was barely requiring any extra oxygen and he was sound asleep. He was letting the vent do all of the work, but that was ok considering how hard Gabe has been working the last couple of days. What a relief to have Gabe back. Phew! What a day!

Thank you Nurse G for working so hard to help Gabe yesterday and today. Let's hope we never have another crazy diaper changing/desatting experience like we did today.

We can only hope that whatever caused Gabe to go backwards for the last 2-1/2 days has been fixed and we can start going forward again.

Thank you to all of our loved ones for your endless support over the last three months. We could not get through this without you.