September 11, 2009

Today was not a good day for Gabe. On the puffiness scale, G didn't look any puffier then yesterday. His ears actually looked a little thinner, so perhaps he is on the road to gettin' skinny again. Unfortunately this was just about the only good thing we can report about Bubba today. When Jesse arrived in the morning G was agitated, his CO2 levels were still high, he was retracting like crazy when he took breathes, and he was requiring PRN's (extra doses) of morphine and ativan. An x-ray was taken to see if his plural effusions were not draining, which would put pressue on his lungs, but they actually looked a bit better than yesterday and are not draining as much as they were earlier in the week (fingers crossed he is beginning to "dry-up"). Dr "B" was curious if perhaps the vent setting was not right for Gabe's current needs and if he needed to be switched back to the other vent. His newer "Big-Boy" vent is able to be changed over to this other setting he felt was more appropirate for G, but is had to be manually changed and no one was quite sure how to manually adjust the vent. Instead of messing with settings they opted for changing Gabe back to the other vent. We were a little concerned about this change because G seemed so agitated, most likely due to air hunger, on the other vent, but it was worth a try. They got him switched over, made a few adjustments to pressures, and what do ya know? He started breathing better and over time his CO2 levels begin to drop. At one point G was so comfortable that he nodded off and let the vent do most the work for him. Poor little guy had a rough day and was exhuasted.

I showed up around 6:00pm and Bubba was still resting comfortably. We stepped out to grab a bite to eat around 7:00pm, at which point Gabe was starting to wake up and was not very happy. We thought he might just need some suctioning and was possibly a bit upset by the noise level in the room. He is very sensitive to noise and it always gets a little louder at change of shift for the nurses (7:00 am and pm). When Jesse got back from dinner, Gabe was just plain old pissed off! He was running a fever, squirming like crazy and crying, well maybe screaming would be a more appropriate description (all silent of course because of his ET tube). Jesse and Nurse "S" pulled all the tricks out of the bag, but none of the usual things seemed to be working. Some blood tests were run to see if he could have an infection. I believe these came back negative. They even took another x-ray to make sure his lungs weren't compromised, and the x-ray looked ok. After trying everything they could possibly think of, Nurse "S" decided it was time for some extra "happy juice." After some morphine and ativan Gabe seemed to calm down. Fingers crossed this does the trick for him. It's times like these we wish, more than ever, that we could pick our little boy up and snuggle him. A snuggle makes everything better.

September 10, 2009

When I left the NICU around 5pm last night Gabe's CO2 levels were beginning to rise a little and he was starting to show signs of labored breathing. Nurse "C" and I discussed two possible causes for this; the first, they lowered his vent settings a bit earlier in the day, so perhaps his lungs were having to work harder to get used to these new settings (that require his lungs to do more of he work) causing his CO2 levels to rise a bit. The second thought was the left chest tube, wich came out early AM on Tuesday, would need to be replaced because there was still fluid and it was beginning to build up and put preasure on Gabe's lungs.

When Jesse arrived this morning Gabe's numbers were not good and his breathing was very labored. He was also requring extra doeses of sedation/pain killers. Something he has not needed in several days. This mornings X-Ray showed fluid in the left plural cavity. It was decided that the left chest tube would need to be replaced. Early this afternoon the team came in and put the chest tube in. Instantly fluid started coming out. Hopefully this will do the trick. While there, the team put some TPA in the right chest tube to try and clear it out because it appeared to be clogged.

GI came up this afternoon and spoke with Jesse about trying an ultrasound and MRI to see if they can figure out where the leak(s) in his lymphatic system are. They feel it may be coming from him abdomenal area and then moving into his plural cavities. An ultrasound was done this afternoon (should have results by tomorrow) and we are still waiting to hear when G's MRI will be. Finding the source of the leak(s) may not change the course of action, we may still have to wait-it-out, but it may provide more info as to why it's leaking.

You may notice, in today's pic, that Gabe is looking a bit puffier (you can always see it in his face first). This is most likely due to the FFP he is receiving. He is not inflating as quickly as he has in the past, which is a good thing, but puffing is puffing, and it is really a bummer to see this happening again. I'm not sure what Dr "B" and NNP "A" have decided to do in regards to his Albumin levels, FFP and him puffing. I believe this issue is still out on deliberation. Another thing you will notice in today's pic is Gabe's left arm is not in his usual "muscle man" pose. Thank you nurse "L" for working with Gabe today and getting those arms stretched out. We would also like to thank OT "A" for coming down every day to work with Gabe and his mobility. The poor little guy is so stiff from not really moving since the day he was born. Hopefully with everyones hard work we can get Gabe's arms and legs more mid-line, opposed to the "frog" pose they have been in. Also, fingers crossed his hand splits will help to straigen his wrists and hold his fingers properly.

Until tomorrow....

September 9, 2009

Happy 10-week Birthday Gabe! And yes...I did torture him with a "Happy-10-week-Birthday" song this morning. Poor little guy, has no choice but to just lay there and listen to my totally and completely off-key singing. I also like to torment him with Twinkle, Twinkle Little Star and any other song I can remember the words too. I have to take advantage of my captive audience because every time I try to sing with Kayla she says, "no mommy, don't do that."

We've left you all hanging without any news about Gabe for the last three days. What can I say? Time flys and sometimes by the end of the day we are just plum tuckered out. I don't think I even brushed my teeth or washed my face before bed last night. We have reached an all new level of exhaustion that I didn't know existed. Ok, enough about us...

When I walked into the NICU on Monday morning my heart jumped with joy when I saw Gabe. I was shocked to see this skinny little boy peacefully snoozing away. There has only been one other time in the last 10 weeks that G has ever thinned out this much, and the best part is, he has stayed consistently skinny for the last three days. My son is shrinking! Yippee! The new Dr "B" is now on rotation and he is amazing. I feel so fortunate to have such a fabulous team of people working with my Bubba. The plan for the last few days has been to try and continue to shrink Gabe. Although he now looks like your average full-term baby, he should not. He was born 8 weeks early, has been under heavy sedation for 10 weeks and is not receiving enough food to really fill out, which means his "full-term" appearance is still edema. Gabe's Albumin levels are low again, due to all the fluid still draining from his chest tube (did have two, now only one, due to the left chest tube some how wiggling its way out in the wee hours of the morning on Tuesday). In the past he has received two different blood products, Albumin and FFP, to try and get his levels back up. FFP has always made him puff in the past so pure Albumin has been used the most often. Dr "B" is not a proponent of the pure Albumin and feels the FFP is a better product. I explained our experience in the past with FFP, but Dr "B" wanted to give it another try. This time we started with just one dose, followed by a Chlorothiazide (diuretic) chaser, along with all his normal daily doses of Lasix. Perhaps this is the magic combo because, other than a little puffing in his ears, Gabe did not begin to puff like he has in the past. Becasue he did so well with the FFP trial on Monday, it was decided he would receive this cocktail every eight hours starting on Tuesday. Again I was nervous, but there didn't seem to be much of any change in his puffiness. This morning his Albumin levels were up by .2 and now sitting at 2.2. Dr "B" once read, and has seen over the years, that an Albumin level of 2.4, or above, seems to be the magic number for Hydrops babies in order to get the fluid off. They are going to try another 24 hour period of the FFP/Chlorothiazide cockatil and see if his levels keep rising. Fingers crossed this works and we can get good Albumin levels without creating more fluid retention. One of the driving forces in getting the fluid off of Gabe is the need to wean on his ventilator settings. With Gabe's thick chest walls it's hard for him to breath on his own. The hope is that once his plural effusions (fluid around the lungs) and chest walls "dry-up" we will be able to work towards extibation and Super G breathing on his own. They are also continuing to chip away at G's morphine and versed drips. Today was Gabe's first day to receive any PRN's (extra doses of pain killers/sedation) in three days. Ever since moving him to the Big-Boy vent Gabe has not required is usual PRN's throughout the day. By this afternoon he was starting to show some pretty strong signs of withdrawl so nurse "C" hooked him up with some happy-juice and all was good. They are also working on his hydracortisone wean, which will take place ove a two week period. In the past they have tried to get him off the hydracortisone in a three day period and it hasn't worked so well. They were originally going to wean him over about a 6 week period, but decided to speed it up a bit since he seems to be handling things pretty well lately. He will let us know if any of his weans are too fast. Gabe has REALLY strong non-verbal skills. Gabe's lungs are still full of all sorts of Goobers. Hopefully once he drys-up and is extibated the goobers will go away. One of his many nick names is now Goob, becasue the kid is just so goobery all the time.

Overall, Gabe has had a pretty darn good couple of days. We are still not completely out of the woods, and have no idea how long it will take for the Chylorthorax or the edema to dry-up (there is still a possability they wont ever), but it made me feel extremely postive when Dr "B" told me, on Monday, that he is "frustrated" but not "discouraged" by Gabe, and those are "two very different things." He seems to feel that we can get Gabe through all of this. Only time will tell, and we have no idea what kind of special needs he may have throughout life, but ya know what? I would rather have a Gabriel with special needs then no Gabriel at all.

All of our love to our family, friends and the always wonderful team at LPCH.

September 6, 2009

Gabe is looking thinner everyday now and we are seeing a side or size of him we have never seen before. Now that he has less edema, he is able to open his eyes more and takes advantage of this more often. Today he was checking everything out and taking in his new surrounding in room four. Nurse "A" decided it was time for a change of position for Gabe and sat him more upright in his new boppy pillow. After we got Gabe situation in his new recliner, he relaxed and was probably in shock to see more than a ceiling above him. Thank you nurse "A" for all your hard work. Gabe also got a new mobile to look at since he has his eyes open now. At first he wasn't too interested but as the day went on he began to check it out more and more. At night, nurse "S" said he was doing great in his boppy and was content watching his mobile spin around. Thank you nurse "S" for keeping him happy and comfortable.

Gabe has a new doctor that is taking over for Dr. "B". We are very excited to see what Gabe will accomplish in the next few weeks. Unfortunately, Gabe was not taking to the monogen that they are feeding him. Every time they feed him, he vomits it right back up. I can't blame him, if it tastes as bad as it smells, I wouldn't eat it either. So for now they are going to withhold feedings and just keep him on the TPN that they have had him on since he was born. The new Dr. "B" said that they will try to feed him a little later after his stomach calms down again. Dr. "B" is very hopeful for Gabe and wants to see him lose some more weight in the near future. This is because he wants to see Gabe get off the ventilator in the near future. Woohoo! Enjoy the pictures and I will update later tonight.

Sept 4-5, 2009

Sorry I didn't get to blog last night. Ended up getting in later than I had planned and just passed out. Yesterday was a busy day for Gabe and he had a lot going on. He had a rough night before I got there and was having increasing difficulty breathing. His oxygen saturation was low and his CO2 was high. The poor little guy was working so hard to breath. Nurse "L" was getting concerned and said it was probably because the fluid around his right lung was getting worse. After the morning x-ray they saw what they called a minimal amount of fluid and then did an ultrasound. This was all done early in the morning before he started getting worse. After hearing that Gabe was having increasing difficulty with his breathing they consulted with the radiologist who said there was only a minimal amount of fluid, approximately 35 cc.

This was starting to sound like Groundhog Day all over again. We've been here twice before and each time he proved them wrong with the amount of fluid he actually has. After watching him get worse they decided it was time to act. At first they wanted to just do a blind chest tube insertion without any aid from the ultrasound. We have found through much experience that this does not work for Gabe and we need ultrasound to place the tube in the right place the first time. At first they said they were unable to find an ultrasound machine or someone from Intervention Radiology to place it. I was persistent that they do it with ultrasound and finally they found someone to do it. Thank you NNP "A" for making that happen. As soon as they put the tube in they got approximately 60cc out immediately. As of now he has put out a total of 360cc. I don't think I will have to tell the radiologist, "I told you so". After the tube was place Gabe oxygen saturation went up and his high CO2 level came down. You could tell that he was much happier and wasn't working so hard to breath.

We did however get some bad news out of all this. Gabe's chest fluid has turned milky white which indicates that he does indeed have a chylothorax. This is the condition in which his lymphatic system leaks lymphocytes into his chest around his lungs. This is not good. This will be a long road to recovery we have been told and it should go away on its own with careful diet and fluid management. Dr. "B" said that this will take some time and patience. There is a drug that has been used to treat chylothorax but it has serious side effects and is rarely effective. They have chosen not to try this drug until we have no more options and we agree completely. They have sent the fluid away for testing to see the levels of protein in the fluid and basically tell them what they already know. Just one more hoop that Super G has to jump through to get out of here and we know he can do it. Thank you nurse "L" for all your hard work with Gabe today, you did a great job.

This morning Gabe was looking good and even seemed to drop a few lb's. He seems comfortable now that he is able to breath and doesn't have all that fluid crushing his lungs. The test results were not back from the chest fluid. However, the fluid is really white now and looks worse than yesterday. They said the test we are waiting for isn't going to help in telling us anything we don't already know. They also said that the Glycogen Storage Disease test that we have been waiting forever for is now on the back burner. Dr. "B" spoke with the pathologist and he said that the sample they have is not going to give us an accurate result. This is because the adenoma's in his liver hold onto glycogen and therefore the test would be incorrect. We will just be keeping a close eye on him and see how he does, looking for any signs that pop up along the way. Doctor "B" said after Gabe is a year old, we will be able to tell if he truly has Glycogen Storage Disease. Of course we know he will be just fine.

Nurse "A" is taking care of Gabe today and she is keeping a close eye on Gabe and I. I always seem to cause some kind of trouble when I'm here with Gabe. This morning I wanted to adjust his crib so I could sit next to him on one side. I unlocked the wheel and started to move the crib and suddenly it started jerking violently since I had forgotten to unlock one of the wheels. Poor little Gabe was now wide awake with eyes like saucers and then he puked. Way to go dad! Shake your kid until he pukes. I then got to give him a bath, so at least something good came out of it. Now nurse "A" says I'm not allowed to touch the crib anymore. Way to go Dad!

Keep you posted!

September 3, 2009

Today was a big day for Bubba. Today he got his Big-Boy bed and switched rooms. Moving Gabriel is never an easy task, but after a few little bumps in the road, he is now settled into his new bed and new spot in room 4 (a much quieter room). Thank you to nurse "A" and everyone who helped with the big transfer project this morning. Once G was settled into his new bed the rest of his day was pretty uneventful. Bubba is handling the breast milk so well that his feedings are now being increased by 3 mls each time. The best part is, every time the quanity of milk he receives goes up, the quantity of TPN (his only source of nutrition until now) goes down. I'm sure his liver will be much happier with this change, and his tummy. The slow wean off hydra cortisone and all of his narcotics continues. Gabe has shown some signs of withdrawl, which is to be expected, but he is monitored very closely to make sure he is not experiencing horrible pains. He will be a bit cranky until all of the drugs are out of his system, so we will have to be patient during this process. Poor little guy!

I am back home now and on Kayla-duty. Jesse will head up first thing tomorrow morning to spend a few days with Gabe. It's the old kiddo-switcheroo-day again. Jesse is ready to go and spend some time with our very quiet son after spending several days with our stubborn 2-1/2 year old. he he...gotta love toddlers!

September 1&2, 2009 - 2 Months Old

Yesterday (September 1) Gabe’s day started out with a lovely “Happy 2-Month Birthday” serenade from Mom. I actually torture the poor little guy with a “Happy __-week Birthday” song every Wednesday, since that is his weekly Birthday, but yesterday was extra special because it marked an entire month. It may sound like a totally dorky thing to do, but when your kid wasn’t expected to survive his first 12 hours of life; every day, week, and month are a really big deal.

As I'm sure you've read in the blogs from the last fews days and weeks, there has been a lot going on with Gabe. Some of which there are answers and solutions too and some that are still complete mysteries. Yesterday we sat down with Dr "B" and several other folks to discuss what we have learned about Gabe and what can be done for him going forward. We were pretty nervous going into this meeting because we weren't sure which direction the conversation would take. Would we be talking about things that can be done to help Gabe get better or would we be discussing the fact that we are out of options and nothing can be done? This has been and will continue to be are biggest fear until Gabe really starts to make some huge leaps forward. We started out the conversation with excitment at how well G was responding to his new ventilator. He seems to be very peaceful on the new vent, is not requiring as much sedation as usual and is actually having more awake-times then ever before. His blood gasses are looking great, and with the assist setting he is on his lungs should start getting stronger. Bubba is tollerating his breast milk feedings very well so they are going to start increasing the amount he is receiving. The goal is to have all of his nutrition coming from the breast milk and not the TPN. TPN is hard on the liver and Lord knows the kid has enough going on with his liver. In regards to his liver; it looks is though we will never know exactly what the masses are. The final report states that two doctors feel they are adenomas and two feel they are focal nodular hyperplasia. They are pretty much the same thing; benign and not keeping his liver from functioning. What there is still a big question mark about is the glycogen storage disease. The stains are still not complete, and Dr "B" is hoping to have an answer by Monday. Please say a little prayer that these stains come out negative, because if he does have glycogen storage disease that opens up a whole new can of worms, and we just don't want to go there. We discussed the MRI finding again and are very happy to hear that other than being underdeveloped (which is to be expected of a child born 8 weeks early, and under heavy sedation and an ET tube for 9 weeks) everything else looks as it should. Another part of Gabe looking as they should, are his lungs. We are happy to report that for the first time in his life Bubba's lungs are actually looking pretty darn good. The left lung is a bit smaller, other than that they seem to be on the road to recovery. Now if we can just get that liquid to stop building up around them and get more edema off his cheast walls, we can start talking extabation (no more breathing tube). They are going to begin to slowly wean G off of hydra cortisone and all of his pain/sedation meds. This is going to be a long, slow process, so we are probably looking at 6 to 9 weeks before Bubba is off of all of these things. Yes...I did say 6 to 9 weeks. Gabe will most likely be in the NICU for at least another 2-3 months. Hydrops is a very long battle. We have heard of some babies taking 5-8 months to recover, and we have heard of those that are not able to recover at all. It is still very scary to think that we do not know exactly what the future holds for our little boy. We can only hope and pray that Gabriel is able to recover from his hydrops and all of the other things he is battling. At the end of the meeting I dared to ask the question I knew no one could give me the answer too, but I just had to ask. I wanted to know if there was hope for Gabe, and this is what we were told: because of the positive progress made over the last few days we can be "cautiously optomistic." Considering that fact that we weren't sure which direction this meeting would be taking, this was a very positive note to end on and has given us some hope for what the futue has instore for Gabriel.

Today, September 2, was a pretty mellow day for Gabe. He spent some time jamming to his spa music; ate "real" food every three hours, had a nice dirty diaper for mommy and nurse "L," and got to be snuggled in his mommy's arms for 2 hours. Thank you nurse "L" for taking the time to pack Gabe up and let me hold him for so long. There are not even words to express how amazing it felt to hold my little boy. I get teared up just thinking about it.