Getting the Kinks worked Out

Just a quick update...Elli is doing pretty darn good. The steriods that they gave her seem to be kicking in and helping with the inflammation/oxygenation. The nurses and doctors have weaned her Delta P down to 30, so she is ventilating well. Her gases have looked pretty good throughout the night and she seems to be getting more stable as they try different things. The respiratory therapist also turned down her MAP (mean airway pressure) the amount of pressure that is delivered with each tiny burst of air to between 14-15. As of now her Nitric Oxide is still going and her oxygen is still turned up to about 100%, but her saturations have seemed much better throughout the night and this morning, we even saw them hit 98% for a split second. Since her oxygenation is so much better when she is calm and sleeping, the doctors decided to go up on her sedation. They turned to Morphine and Versed up last night, but it didn't really work. The night nurse ended up giving Elli 5 doses of PRN meds, so this morning they cranked them up again, but clearly our little Miss does not want to be sleeping. Daddy is currently sitting by her trying to get her to close her little eyes, but she is resisting. She was doing the same thing last night when we were trying to leave. Since Elli has been so much more stable through the night and this morning the doctors and surgeons think that is in Elli's best interest to get rid of the silo. The plan is to clean out any old blood or yucky drainage and put in a patch to allow room for the remaining intestines in the abdomen. Hopefully this will decrease the risk of infection and help Elli in general. So I guess the plan is to to have surgery this afternoon at 1:00 to close with a patch. Will post more when we know more.

Fine Tuning

We are getting into the bad habit of staying with Elli until the wee hours of the morning. Last night we stayed until almost 3. Elli has been pretty up and down. She is either oxygenating or ventilating but not both for some reason. Her gases have looked pretty much the same, not horrible but not great.

This morning Brian and I went to the Community Blood Center here in Kansas City so Brian could give blood. He has been wanting to do this for the last week or so since Elli has been relying so much on blood he wanted to give back ( I am not able to give for another 4 weeks, but plan to then).

The Doctors decided that Elli needed to have her Nitric Oxide turned up to 20 because she was not oxygenating well. Dr. K thinks that her pulmonary hypertension is back. This is due to the fact that during development, her lungs did not form correctly. Because she has only one "true" lung, the amount of blood flow that normally goes to both lung is forced into the right and very tiny left lung. It is basically like trying to fit 20 gallons of water into a 10 gallon tank. The other reason Dr. K thinks that Elli might not be oxygenating as well is that she is having an inflammatory response to the amount of blood that is collecting in her chest. This causes increased release of white blood cells from the bone marrow that are trying to restore harmony in her body (since there was intestines in the space, the body wants to fill it with something, and it happens to be blood). They are hoping by tweaking the vent settings, keeping Elli calm (aka sedated) and by starting steroids that they will be able to reduce some of the hypertension and allow her lungs to relax a little more thus enabling her to have better oxygen exchange.

We are really hoping that they figure out what Elli likes because this afternoon her oxygen saturation ( the percent of red blood cells carrying oxygen) was down to 82% and hung out there for almost an hour (no.. we were not breathing during this time) Finally they adjusted the vent a little and her saturations have slowly came back up as high as 92% but they are hanging out around 89-90%, but Dr. K seems to be thinking that it is acceptable according to her blood gases. As far as her ventilation goes, her CO2 levels have been looking good, as well as her blood pH, blood pressure and urine output (all good signs).

Shoot.. one of resident pediatricians just came in and told us a little bit of news we didn't want to hear. The surgeons and Dr. K had been discussing the possibility of having surgery tomorrow to reduce Elli's slio and either close the abdominal muscle or put in a patch that goes on the skin to give a little more room for abdominal expansion. Honestly Brian and I don't think that Elli is ready for another surgery so soon considering that she really hasn't stabilized from coming off ECMO, we thought that Dr. K was on the same page, but I guess now they are going to do an "exploratory" surgery tomorrow around 1 ( don't hold your breath, I would be surprised if it even gets done tomorrow before 5). Either way the surgery team wants to go in and evaluate the silo, possibly irrigate some of the blood out of the abdomen and decide what the next step should be. We are hoping that if anything they use a patch to allow for more room in the abdomen and after Elli grows a little more, gets more stable, and her lungs have time to adjust to the workload, that they can go back in and do the final closure. The resident pediatrician said that they were going to do it in the OR, but hopefully they will be able to do the "exploratory" part here in the surgical suite so they don't have to put Elli through a big move. It's just hard to believe that they think Elli is ready for yet another surgery, sedation, and possibly the risk of more bleeding. It is all so scary, we just wish that she could have more time to rest between these huge procedures on such a little baby.

As far as tests today, Elli had another chest x-ray, which Dr. K thought actually looked better than yesterday. They have determined that the clouded area on the upper lobe of her right lung is just a shadow from the left-over hematoma from the ECMO cannulas that were in her neck. Dr. K also thought that both the right and left lung were well expanded, and the left a little more than before. Also she had another ECHO of her heart, and the results were about the same as they had been on the previous. The ECHO showed a slightly smaller left ventricle (the part of the heart that pumps blood to the body) and a higher pressure in her right ventricle (the part of the heart that pumps de-oxygenated blood to the lungs where it is supposed to pick up oxygen to take to the rest of the body) Well that is where the pulmonary hypertension is coming from. So really nothing new with the heart that we didn't already know. In other news, the blood culture from Elli's arterial line in her foot didn't grow any real type of bacteria. It grew out a little something, but if she were in "normal world" they would not use antibiotics on it, it would resolve on it's own. Since Elli has had so many surgeries and has so many lines she will continue the current course of antibiotics for about another week.

Ok this post is getting longer and longer, but Dr. K just came back in to talk to us once again. The surgery is not definite for tomorrow, he will have to okay it first depending on what kind of night and morning Elli has and let us know that they will be able to do the surgery right where she is. Dr. K even said "they do open heart surgeries in this room, they should be able to do this little procedure" I don't really think he wants her moved, and neither do we. On that note, we are going to be so bummed when Dr. K leaves. He was scheduled to be the Attending neonatologist until last Friday or Saturday but decided to stay until Thursday (since he thinks Elli is such a fighter, he wants to see her get stable). Seriously I must stop typing now...If more news comes up, I will put it in another post.

Delta P?

Daddy's 1st Diaper Change...a little rocky, but went well none the less.

Kisses for Elli after the big Diaper Change.

Elli spent about 30 minutes this afternoon just looking around, she seemed pretty happy but...

...clearly she didn't like something. How can such a sour face look so darn cute?

Elli looking at her Mommy, thinking why wont this lady just pick me up already.

What the heck is Delta P? Brian and I have gotten very acquainted with Mr. Delta P. It is a HFOV setting that seems to determine what kind of gas Elli is going to have. (The Delta P is the amount of pressure behind each burst of air put into Elli's lungs) Currently Elli is receiving 600 tiny bursts of air each minute. No that is not a typing error, I said 600! Miss Elli has decided that she likes the Delta P at 40. Try and turn her down to 38 or 39 and her CO2 starts going up, and she starts really breathing over the vent, I guess she is just trying out her new diaphragm. The doctors really want to wean Elli every time she has a good blood gas but once they turn the Delta P down, she gets cranky and her CO2 is on the rise. The reason that they want to wean the vent settings, and won't just let her sit tight at a level she likes is that the HFOV tends to beat up the lungs. They want to least amount of pressure that Elli will tolerate with her numbers still staying in the acceptable range, so hence the constant trials to wean. As for right now, they are leaving the Delta P at 40 for a while, it has been there since around 6:00, so we hope that they let her adjust to it for a while. As far as everything else goes, Elli looks great on paper, her blood pressure has not had any issues since her blood volume has gotten back to where it needs to be and she is still peeing like crazy. Shoot, one of Elli's midline IV's just got pulled out, it was clotted off, so I don't know if they are going to try and start another one or what. And now I just heard that that her scalp IV that she is currently getting Vancomycin through is all red, so it's probably bad too. Darn it Elli, sounds like a few more pokes to come. The nurses have been giving Elli several PRN doses of Morphine and Versed to try to keep Elli from breathing over her vent, so I am wondering if they will end up turning up the drip rates pretty soon, but haven't heard any word of that yet.

Still back in the surgical suite all by ourselves. They had talked about moving Elli back into the ECMO room, but she is not stable enough yet, but hopefully she will begin to stabilize over the next several days. So as of now the plan is to keep Elli happy. With any luck she will be able to very, very slowly tolerate some lower Delta P numbers without her gases looking too bad.

One more thing, Brian and I put the hit counter on around this time last week and it is unbelievable, over 12,000 hits! That is amazing, we cannot believe that so many people are checking in on Elli. It is so refreshing to know that a baby that hardly anyone has got to meet can have such a great impact on others. She is truly a fighter and I hope that everyone continues to watch her progress, because we are all going to make it through this crazy journey. And everyone that has posted thoughtful comments, it has been a true help to Brian and I. These last few days have been so crazy, but it is nice to be able to sit down at the computer, pour out thoughts and know that there are so many people that truly care about all three of us. Thanks again, hopefully the next several posts will be filled with cute pictures and good news. Thanks again. Hope and Love....Brian, Cassi and Elli

Rocky Road

We knew going into this that it was going to be an emotional roller coaster, but really we had no idea. Yesterday went from super low to pretty high. And today has been highs and lows each hour. Apparently Elli knew that we left last night because soon after we did, her gases started looking worse, the changed some vent settings and gave her some PRN morphine and versed, trying to keep her calm so that she was able to let the HFOV (high frequency oscillating vent) help blow off the CO2.

I called early this morning around 5 and she was doing okay, not great, but they were tweaking her settings a little hoping that it would help. Brian and I got to the NICU late this morning considering we didn't leave until around 2:30 last night and then had to have our nightly chat when we got back to RMH, so incidentally we slept in until almost 10:00 (luckily I hadn't pumped for 4 hours, so our alarm clock was a wet T-shirt if you know what I mean). Anyways when we got here, Elli wasn't doing the greatest. Her HFOV had been turned up, and so had her O2 flow it had been at 40% when we left last night and they had it turned up to 59%. Her blood gases were looking worse and worse, and I was freaking out. Dot our nurse for yesterday and today said that it all started going a little down hill since they came in and did an ultrasound of Elli's abdomen. They were looking at the liver to see if any of the swelling had gone down and looking for any possible active bleeds. The ultrasound isn't 100% back yet, but it doesn't appear that she has any active bleeds, because her Hemoglobin and Hematacrit have been excellent and her blood pressure is also holding stable without any extra blood or boluses (thank goodness, her little head is so edemetous just to rest your hand on it for even a few minutes, your fingers leave an indention).

Anyways, back to the ultrasound, when the ultrasound tech was doing it, she was pressing on Elli's abdomen making her very mad, also soon after she left Dot noticed a very large amount of blood in Elli's chest tube and on her bed (equivalent to almost 50 mL's). At this time Elli started destating (her blood oxygen level started to drop) and was down in the low 80's, so Dot turned her O2 up to 80% which helped a little, but only brought it up to the upper 80's low 90's. This is odd because typically Elli has not had a problem with oxygenation, it is with ventilation (CO2 removal). So of course she once again had the doctors scratching their heads. They did a chest x-ray to make sure that the pressure on her stomach from the ultrasound hadn't disrupted anything and to make sure that her lung wasn't collapsing or anything. The x-ray looked pretty good, Dr. A actually said that it looked a little better than last night, but the questionable area in the Right upper lobe is still there. They are thinking probably pneumonia or a small amount of collapsed area. Either way like I said last night the HFOV helps with both and she already has antibiotics on board that would cover the pneumonia. Also last night they did a blood culture of her arterial line (measures internal blood pressure and it is where they draw all of her blood from) and it was positive, so once again the antibiotics that she is currently on should cover any type of infections that are brewing.

Either way they have tweaked her vent settings and given her a round of PRN Morphine and Versed to help keep her from trying to breath over the vent, and it seems to be helping. Her last set of blood gases were all in the normal range, so of course when they look that good they have to decrease the vent settings just a little bit to make sure that she is still having to do a little bit, and not getting lazy on us. Currently her oxygen saturations look pretty good mid 90's and she is on 63% oxygen. Dot is going to get another set of blood gases at 4 to make sure that they didn't turn things down too much and that she is tolerating everything well. Either way I feel like I am living one blood gas to the next. Hopefully everything will get settled down pretty soon, but as of right now Elli is still extremely critical. Brian and I have pretty much been sitting by her bed talking to her and holding her hand since her surgery. She is one tough cookie, I actually wish that I was as strong as her. More of the Elli drama to come soon and some new pics (daddy changed his first diaper..Yeah!!)

She Likes It

Right before shift change the nurses got a set of blood gases on Elli and her CO2 was back up to 74 so on the oscillating vent she went. Dr. P who has basically been in Elli's room all day pacing back and forth (especially those first few hours after she came off ECMO) discussed these most recent blood gases with the Neonatologist that was in house Dr. T and he decided that it would be best for Elli to go on the oscillating vent. Of course we had to leave for shift change and so when we got back they had done another set of gases that were only slightly improved, but as of 10:00 Elli's gases were PERFECT! What a little champ, she really likes the oscillating vent. Her color looks so much better and her blood pressure is finally up where it was before she came off ECMO. Also, it looks like her bleeding around the silo has pretty much stopped. There does not appear to be any new oozing from that area or around the abdominal tube (there had been a steady trickle from it earlier this afternoon). Apparently the Heparin is finally getting out of her system, and she is peeing like a champ which also helps to excrete the Heparin. So all things considered from this afternoon, Elli is pretty stable. Dr. P even turned down her vent settings at 11:00 and is going to get a blood gas at midnight to see how well she tolerates it. We are planning on staying at the hospital until that gas gets back, then we might go get some shut eye. Elli did wake up just for a few minutes this evening when she had a chest x-ray taken. Dr. P wanted to see what Elli's lungs were looking like. He showed Brian and I the x-ray and it looked pretty good. Her right lung looks well inflated with a questionable small area at the very top that looks like it might be a) collapsed b) pneumonia 3) hematoma area where the ECMO cannulas came out. He is going to keep a close eye on it over the next few days, but if it is pneumonia, Elli is on antibiotics. If it is a collapsed area the "jet" from the oscillating vent will "knock it out" so to speak. And a hematoma will resolve itself, so pretty much all bases are covered whatever the reason might be. Dr. P also seems to think that the little left lung "nubbin" looks like it is inflated. He showed us on the chest x-ray but it was pretty hard to see and you really had to squint. I guess any lung tissue on the left side is better than nothing and it wont hurt if it is helping the right lung out. I guess that's about it for tonight. Hopefully all will be well in the morning. I am sure that I am going to have to call at 2 and 5 when I pump just to make sure she is still doing okay. It's almost midnight now, waiting for the gases then off to the RMH. Thank you to everyone that has been checking the blog and leaving comments. I think that today was even more stressful then the day Elli had surgery. She is defiantly giving mommy and daddy some grey hairs, but they will be worth it when we get to take her home.

Off ECMO

As of about 2:00 this afternoon, Elli has been off ECMO. Because of the increased bleeding from around her silo, the doctors were forced to speed up the weaning process, and the surgeons were called to decannulate at 1:30. It was a few rocky hours after coming off, her blood pressure dropped very low 30's/20's. The nurses had to give 2 normal saline boluses to try to keep Elli's pressures up while they waited for blood from the blood bank. Elli has gotten 2 blood transfusions and a unit of platelets since the surgery and her blood pressure is just now leveling out. It is not as high as it was before surgery but it should improve once her blood volume is back to where it needs to be.

As far as how well she has been doing oxygenating and ventilating, the oxygenation part is going well but the ventilation (blowing off carbon dioxide) is improving. Elli's blood gases have been pretty good, and are getting better. The last CO2 level was 65 down from 89 (normal range is 35-45) so they changed around the vent settings a little bit, and now are holding them where they are. Currently Elli is still on the conventional vent with nitric oxide, but the daunting "jet" vent has been pulled into the room in case it is needed. As for now, if her CO2 levels continue to decline, she will probably get to stay on the conventional vent. Elli is still pretty knocked out because of the amount of Fentnyl (pain med) that they gave her during her surgery, apparently little Elli didn't want to fall asleep for the procedure and they had to give her a couple extra doses to get her to cooperate. The nurse did end up having to put another IV in Elli's head because the surgeons were unable to place a Hickman central line during the decannulation, so we are still left with the midline placed earlier today and now a scalp IV. Super Brian (who got the midline earlier) is now attempting to put in a PICC line. X-Ray is here to verify placement, so hopefully it is in the correct spot. I guess that's all for now, will post later if there are any changes. We are praying for a quiet night, and that Elli will continue to prove how strong she is.

We're Weaning

Got to the hospital this morning and they had already started weaning Elli off ECMO. They restarted the Nitric Oxide and have turned up her vent settings. The ECMO flow is now down to 150 and her blood gases have looks great so far. They are going to turn it down to 100-120 at 11:00 and will continue to do blood gases every hour. The plan is to have Elli completely off ECMO today and the surgeons are even going to take the cannulas out of her neck. The reason that they are sort of speeding up the process is that Elli has been bleeding a little bit more, her chest tube is still having a fair amount of drainage, and now she is oozing blood around her silo. The nurse today said that the surgeons came in this morning before we got here and repositioned her silo because it was coming out on one side. Hopefully that was causing the bleeding and it will slow down. Once Elli is off ECMO and the Heparin clears her system, her blood will be able to clot, slowing the bleeding even more.

Elli just got a midline placed, since she didn't have any IV sites besides her ECMO cannulas, it was imperative that they find some sort of access. One of the male nurses, Brian, got access on the first try. That was very refreshing. Seeing her little hand get poked should have been no big deal, but as of today, we had really only seen Elli poked with a needle the day before she went on ECMO. The doctors have also decided to restart Elli's antibiotics for prophylactic reasons. Other than that we are just waiting and praying that this is an easy transition. Will keep everyone posted on her progress.