16 Months Old

Lynnea is now 16 months old. During the night, and again this morning, they had to increase the amount of Epi that she was getting because her blood pressures were too low. The good news is that over the course of the day they were able to wean it back down again, and for the time being her blood pressures look OK. She has not officially spiked a fever today, though her temperature is clearly on its way back up now (currently 100, officially it will be a fever if it reaches 100.4), so I will not be surprised if she spikes one overnight. Her white blood cell count was lower today than yesterday, but still not as low as it was the day before yesterday. Her tube feedings have not really been going well, despite switching her to a GJ-tube, so today they cut her feedings in half to see if that helps. She was not as agitated today as she was yesterday. Tomorrow she will likely have a lung profusion scan to check the amount of airflow and blood flow to both of her lungs.

Another Boring Saturday at the Hospital

Lynnea had an uneventful day. She had a fever this morning, but it came down nicely with some Ibuprofen this afternoon. She required some extra oxygen support earlier today, but is not on any extra now; the rest of her ventilator settings remain unchanged. There was talk of doing a lung profusion scan today, but they've decided to wait until Monday.

A GJ-Tube and Stitch Removal

Today Lynnea had her G-tube switched to a GJ-tube without any complications. Dr. St. Louis removed the stitches from her incision today in order to allow any fluid to hopefully drain out. He sent cultures from the incision site. Her fever was up again this morning (101.8), but has been down since this afternoon. Her white blood cell count was also up again today. She was awake more often today than yesterday, and very irritable when she would wake up, so again, she's having some sedation issues. Nothing else has really changed.

A Pretty Good Day

Lynnea had a pretty good day today. Her white blood cell count was lower today than it has been in the past few weeks, which is a sign that maybe she is finally starting to move past this infection. Her temperature was down most of the day (98.4 - 98.9), but she began to spike a fever again this evening. Her temp is now 101.3. Her blood-oxygen saturation levels have been in the low 80's most of the day, and most of the day she has only needed minimal oxygen (25-30%) and at times she did not require any extra oxygen. Her ventilator is still set at a PEEP of 10, with a rate of 12. Dr. St. Louis removed her chest tube earlier today, and he seems to be relatively happy with the progress that she is making.

Her G-tube began to leak heavily again today, and the theory is that she is just not moving her food through her system fast enough because of all of the sedatives that she is on. So, tomorrow sometime she will have her G-tube taken out, and they will put in a GJ-tube instead. A GJ-tube is a longer tube than her G-tube (which goes directly into her stomach), and allows food to go into her small bowel, rather than into her stomach. We, of course, hope that this is only temporary, and that we will be able to return to a regular G-tube before we go home.

Results of the Bronchoscopy

This morning Lynnea had a bronchoscopy to try to figure out why she's having such a difficult time weaning off the ventilator. It turns out that part of her left mainstem bronchus (the airway leading into the left lung) is pinched about 90%. In addition to the narrowness, this part of her bronchus appears to pulse with her heart beat, which means part of her heart is pressing against it, likely causing the narrowing. This isn't a huge surprise; this has been suspected for awhile, but seems to be (or to have gotten) worse than expected. Without fixing this problem, it is not going to be possible to successfully take her off from the ventilator. To fix this, Dr. St. Louis will need to do more heart surgery to move whatever is pressing against the bronchus off from it. Unfortunately, Dr. St. Louis is unable to safely operate on her as long as she continues to have active infections and run persistent fevers. The plan for the moment is to wait another day or two, hoping that all of the antibiotics that Lynnea is on will finally clear up the infections. If she continues to run fevers beyond the next day or two, Dr. St. Louis will most likely need to open part of her chest incision up again to try to drain any remaining fluid that might be collecting there (and isn't draining out the chest tube that she still has in place) and possibly look for other sources of infection in her chest since that's the most likely culprit. He said that he will try to make a decision about what he wants to do by this weekend. For now, Lynnea's ventilator settings have been increased to a PEEP of 10 in order to keep the bronchus open.

Difficult Moment

Lynnea was easily agitated throughout the day today, and it was very difficult to keep her calm. She had an echocardiogram this morning, that looked pretty good. There wasn't anything significant found on yesterday's CT scan. Dr. St. Louis looked at her incision site again today, and said it looks pretty good. Tomorrow he might pull her chest tube out, and possibly pull out some of her stitches. Tomorrow she will also have another brochoscopy to get a good look at her lungs to try to figure out why she continues to need such a high PEEP on her ventilator settings.

This evening she decided to give me a bit of a scare. Her temperature climbed to 104, and she was very agitated, despite the nurse giving her every form of sedation that has been ordered for her. Her heart rate was very high -- at one point during this episode it hung out in the 190's, and then her blood pressure took a drastic drop, and continued to drop until it was too low for the blood pressure cuff to read. After Lynnea managed to completely wear herself out so that she was no longer so upset, and after the doctors temporarily increased her Epinephrine, her blood pressures came back up to an acceptable level. They continue to sit at the very low end of the range that the doctors are comfortable with, but at least they are back in the range. Her temperature has come down to 99.5.

Traveling Around the Hospital

During early morning rounds, Dr. St. Louis decided that Lynnea' should have a CT scan today to look for any sources of infection that might have been overlooked because, even with great antibiotic coverage, she continues to have persistent fevers. Shortly after this, the decision was made that she would also have a PICC line placement today (not sure whose idea it was to get a PICC line; I can't say I'm surprised by it, but I was still kind of hoping to avoid it), since she would have to travel to another part of the hospital for the CT scan, it made sense to get a PICC line while she was out and about rather than trying to move her twice. This made perfect sense. Then there was some confusion about her contrast dye allergy (they use contrast dye when they do CT scans) and how long beforehand Lynnea has to have Benadryl before they can use the dye. After trying to explain it to people all day, and not getting anywhere (I tried telling everyone that it's fine to just give Benadryl right before giving dye, and then a few hours later giving her another dose of Benadryl has always worked in the past), everything was postponed until tomorrow. Then Dr. St. Louis showed up. He was angry that everything was postponed, so he went to talk to everyone involved about it, and Lynnea did end up getting both the CT scan, and the PICC line this afternoon. I haven't heard any results from the CT scan yet, and the PICC line placement went fine.

Not much else has changed today. They did manage to wean her ventilator settings a little bit. She's now has a PEEP of 6, rate of 10, and is still at 45% oxygen. Also, her feedings have increased to 22 mL's per hour.

Not Moving Forward

As expected, extubation was not an option today, and does not look hopeful for tomorrow either. Her ventilator settings are now a PEEP of 7 (didn't try to wean that today -- thought about it, but she was struggling to breathe, so they didn't turn it down), rate of 12 (which is down from 20 this morning, but like I said, she's been struggling so it might go back up some before morning), and oxygen at 45%. Her temperature today was about the same as yesterday -- still feverish, the highest I saw was 102.2. Nothing else has changed. They tried to turn off her Epinepherine this morning because she's on such a small dose anyway, but when they turned it off, her blood pressures dropped, so they turned it back on, and now she's on a little more than she was yesterday.

A Slight Step Backwards

The goal for Lynnea this morning during rounds was to wean her ventilator settings so that they could extubate her tomorrow. This went fine for awhile, and they managed to get her rate down to 12 without major problems, but then they started trying to turn down the amount of pressure support (PEEP) that the ventilator was giving her. It started out at 7, and the goal was to get it down to 5 by the end of the day. They turned it down to 6, and initially she did OK, but about an hour after they turned it down, she had an episode of respiratory distress, which in turn dropped her blood-oxygen saturation levels to the low 50's, and when they did a lab draw to check her blood gasses, they looked really bad, so they ended up turning the pressure back up to 7, and turning the rate back up to 20. And they haven't tried to wean her since then (this happened while I was getting lunch). So, the plan is no longer to try to extubate her tomorrow because she is not ready. Other than that, her day hasn't been too bad. Her feeds are now up to 12 mL's per hour, and her temp is now 101.3. They switched her antibiotics around again today because the ones she was on didn't seem to be super effective.

Sedation Still an Issue

Lynnea's biggest problem today was still a lack in keeping her sedated. It was very difficult to get the doctors to understand that they needed to increase sedation rather than trying to wean her off from any of it at this point. Other than that, she had a pretty good day. Her white blood cell count was down a little bit, and her fever only spiked to 101.7, so perhaps the antibiotics are working. They managed to wean her ventilator rate from 26 down to 16 over the course of the day, and she still seems to be doing OK with it. She is still on 45% oxygen. They still hope to extubate possibly Sunday or Monday. Dr. St. Louis took a look at her incision site today and said that it looked pretty good. He was afraid that it might look infected, but so far it seems OK. He said he might actually start pulling a few of the stitches out over the weekend. Her feedings were increased from 2 mL's per hour up to 5mL's per hour, which is still a very small amount, but at least she's tolerating it, which means they will probably increase more tomorrow.

Difficulties with Sedation

It has been ten days since I've been able to hold Lynnea, and although everyday that I have to go without holding her is difficult, today was especially hard because, after taking Lynnea off from her paralytic drugs yesterday, it has been very difficult to keep her sedated today (and this is where I should insert a giant "I told you so" to all of the doctors that thought it was a good idea to take her off from her paralytics so soon...). Since she's not really sedated, now she can look at me with her pleading eyes, and I can watch her silently cry as she kicks her feet and flails her arms, which only causes her chest to hurt more, and she doesn't understand why I can't pick her up, or why I can't make her stop hurting. She is now on Fentanyl, Versed, Morphine, Ativan, and Precedex for pain control/sedation, and she still manages to completely wake up (again with the "I told you so"). For what it's worth, Dr. St. Louis is back from vacation and he did take me very seriously when I told him this morning that this would happen and we really should consider increasing her sedation today (she was only on Fentanyl and Versed this morning). Unfortunately, the extra sedatives have come just a little too late in the game to be particularly useful.

On a slightly more positive note, they did begin weaning her off from the ventilator today. Her Nitric Oxide is now turned down to 2%, and should be completely off by morning. Her ventilator rate (the number of breaths the machine takes for Lynnea) has been turned down from 36 to 28, and so far she seems to be doing OK. She is still on 45% oxygen; the plan is to begin turning that down after she is off from the Nitric Oxide.

She continued to run a fever most of the day. The highest temperature I noticed was 102.2. She is down to 99.6 now, and I hope she stays there, at least overnight. Also, they decided to very slowly re-start her tube feedings so that they can eventually take her off from the IV nutrition that she's on. Right now she's only getting 2 mL's per hour of Pediasure, but it's a start.

Closed Chest

Dr. Bryant did decide to close Lynnea's chest today during the wash out, so now she's all closed up. This is most likely a good thing; there is still a chance that, because they closed while her chest is infected, there's a chance that it will turn into a wound infection, causing the chest to not heal properly (this is what happened last year). The infectious disease doctors switched some of her antibiotics around now that we know what the infection is that we are treating, so hopefully this will work to clear it up. Her temp is now 101.8, but it is expected to continue to go up simply because having her chest closed was a stress on her body. They have also discontinued her paralytic drugs, so she is able to move again, though they still have her heavily sedated (unfortunately, without the paralytic drugs, keeping her sedated will most likely be much more of a challenge). She is on 50% oxygen today, tomorrow they might start trying to turn this down some.

Lynnea's Day

Lynnea's day was uneventful. Her fever reached 102.2 this afternoon, and is down to 101.8 now. They increased the amount of oxygen she's on from 35% to 45%. They did manage to decrease the amount of Nitric oxide that she's on to help open up her lungs -- the went down to 10% from 20% that she's been on since Friday (before that she was on 40%). They have also been able to decrease the amount of Epinephrine that she's on a little bit (Epi helps with heart function, and she's on a continuous drip, but they give her extra, or increase her dose, when her blood pressures are very, very low), which means that her blood pressures have been relatively stable over the past 24 hours (still a little on the low end of things, but at least it's not the constant up and down that it was a few days ago). The bleeding from her G-tube has not increased, and may have actually decreased some, though it's hard to say for sure. Dr. Bryant is planning on doing another wash out tomorrow in order to try to drain off the fluid that has built up around her left lung (the Infectious Disease doctors, that are now involved because of her infections, feel that it is very important to remove that fluid soon to help keep the infection from spreading and causing more problems). I don't know if he has any intention of even trying to close her tomorrow; if I had to guess I'd say no.

Waiting

Dr. Bryant again decided not to close today (it looks like Dr. St. Louis is on vacation for the entire week...) because the cultures that were taken yesterday during the wash out came back positive today with the same bacteria that the found in her chest tube drainage from the day before. So, they've decided to give her at least another day to let the IV antibiotics work on killing off the infection, and they have stopped the irrigation of her chest because it was leaking through the bandages, potentially opening her up to more infections, so the benefits did not outweigh the risks.

More Complications

Dr. Bryant did a chest wash out on Lynnea this morning, and still decided not to close her up yet. Due to the positive cultures that have come back from the drainage from her chest tubes, she has been put on yet another antibiotic (she's on three now), and they have decided to irrigate her chest cavity with antibiotic solution on an hourly basis to help kill off any bacteria that are growing in there. During the wash out, they took cultures from the incision site itself, and so far they are all coming back negative; if they remain negative overnight, Dr. St. Louis may decide to close her tomorrow. Prior to the wash out today, her temperature was down a bit, but following the wash out, she again spiked a high fever. The highest it got today was 103.1. That was a few hours ago; now it is down to 100.7. This evening she also began spitting up blood, and draining blood from her G-tube. The doctor that's on this evening seems to think that this is probably a GI bleed somewhere in her stomach from all of the stress that she's been under during this past week (sort of like an ulcer, I believe), or possibly from the back of her throat from the breathing tube. Because of this, she's an even bigger bleed risk than before, so they are not willing to give her any more IV ibuprofen to bring her fevers down. Tylenol is still mostly ineffective, as are the ice packs and wiping her down with cool wash clothes. Nothing else has changed.

Not Much Has Changed

Lynnea's fever was up most of the day, though it is down again now for the moment. Her blood pressures have been all over the place still. Late this afternoon they were finally able to turn her oxygen back down to 35% where it was last night. So, really, not much new today compared to yesterday and the day before. She's still on the schedule to be closed tomorrow, but as always, that decision won't be made until tomorrow. We don't have official results yet from the latest rounds of cultures, but the cultures done on the fluid from her chest tubes were not promising, showing some possible signs of infection. We'll see what the doctors have to say about her in the morning.

Still Wide Open

The plan was that Dr. Bryant would close Lynnea's chest up this morning. He had her on his schedule for 10am. She seemed to do OK overnight -- fever down most of the night, blood pressures not fluctuating as much, sat's fine on only 35%oxygen, etc., so there appeared to be no reason not to close her up today. Well, about an hour before he was going to close her, she spiked a fever of 102.7, dropped her sat's enough to require the nurse to turn her oxygen back up to 55%, and raised her heart rate and blood pressure. So, Bryant decided that he wasn't going to take the risk of closing her today. Maybe tomorrow her fever will be down and Dr. St. Louis might be willing to close her. Along with the usual cultures that are sent every time that she spikes a temp (blood, urine, sputum) they also decided to send cultures from her chest tube drainage, and her G-tube drainage.

Saturday at the Hospital

Weekends at the hospital are notorious for being a bit boring. Today was no exception. Lynnea's blood pressures continue to fluctuate, her fever is back up to 101.2, she's on the same amount of oxygen as yesterday, her chest is still open, and her left lung doesn't sound very good. Her left lung didn't really sound good even before surgery, so this isn't exactly a new problem. They saw on her chest X-ray on Tuesday that she had a pleural effusion on the left lung (fluid building up), that Dr. St. Louis had hoped to drain when he did the wash out/ECMO decannulization on Wednesday, but he wasn't able to get it completely drained off, so it continues to be a problem. There is also some concern that it doesn't sound like a lot of blood is being shunted to her left lung through her new B-T shunt (it wasn't flowing to the left with the old shunt, so this is also not exactly a new problem, it's just one that everyone hoped would get better with the new shunt). There is still a possibility that Dr. Bryant will try to close her chest up tomorrow sometime, but no definite plans have been made.

A Little More Stable

Today Lynnea's blood pressures were more stable than yesterday and last night. Still dropping here and there lower than anyone is happy with, but not as often, which is better. Her fever was up most of the day, but this afternoon dropped spontaneously for awhile. Unfortunately, it's clearly on its way back up again now. During afternoon rounds, Dr. Bryant (the other pediatric cardiac surgeon here), said that he might try to close Lynnea's chest on Sunday (Dr. St. Louis is off this weekend), but we'll see how she does between now and then before he makes any real decision about it. They have managed to cut back on some of her oxygen again, now she is down to 35%. The ventilator is still doing all of the work of breathing for her, but at least she isn't requiring super high levels of oxygen, which is encouraging.

Not Closing Today

During the early morning cardiology rounds, Dr. St. Louis said that he is not going to close Lynnea's chest today, maybe it will happen sometime over the weekend. Her blood pressures continued to remain very unstable overnight, and her fever returned as soon as the ibuprofen wore off, so that problem has also not resolved itself. There wasn't much else said about a plan for the day this morning (other than not closing), but that's often how things go with the early morning rounds. Dr. St. Louis seemed at least vaguely hopeful that maybe Lynnea just needs a little bit more time to stabilize, and he didn't seem overly concerned about any specific cause of her blood pressure fluctuations. So today we will continue to sit around and wait.

Chest Still Open

Dr. St. Louis decided that Lynnea is still not stable enough for him to want to close her chest up today. Her blood pressures have dropped dangerously low several times today, so it is a constant struggle to keep them in the range that they would like them in. She also continued to run a fever all day -- her temperature sat right around 102.1 most of the day. They were finally able to bring it down with an IV form of ibuprofen that they were willing to try after Tylenol and ice packs failed. So far, none of the cultures that they sent to the lab yesterday have come back positive, which is good, but it often takes a few days for these things to show up, so we haven't ruled out the chance of infection yet. It is also unclear exactly how long she has been running a fever -- it showed up as soon as they took her off from ECMO, so the thinking was that it could have been related to the adjustment of coming off ECMO, but it's possible that she was running a fever even before they took her off ECMO. If that were the case, they would not have known about the fever because, on ECMO, body temperature remains constant because the blood that is being pumped and oxygenated by the ECMO machine is also temperature controlled by the machine, so a fever would not have been detected. To be on the safe side, a second antibiotic has been added so that if it is an infection, it is hopefully being treated before it can spread any further, or make anything else worse.

At one point today, Dr. St. Louis felt that it might help her blood pressures stay up if they would cut back on some of her sedation and paralytic drugs. This turned out to be a bad idea, and her blood pressures dropped even lower the more she was able to wiggle, so she was put back on all of her sedatives and paralytic drugs.

The good news for the day is that, this evening they were able to turn down the amount of oxygen she is on. She's now down to 60% oxygen, which is much safer for her lungs. It was only turned down about an hour ago, but so far she's doing OK with it. At this point, her blood-oxygen saturations seem more dependant on her blood pressures staying up than on the amount of oxygen she's getting through the ventilator. When her blood-pressures drop, her saturations drop, which is yet another reason we would really like her to keep her blood pressures up at a reasonable level.

Pictures of Lynnea

Lynnea did fine again overnight. Her blood pressures still continue to fluctuate quite a bit. During rounds this morning Dr. St. Louis said that he might still try to close her chest today, or he might wait until tomorrow. He didn't really give a clear reason why he might wait, but it may have had more to do with his caseload for today than anything to do with Lynnea. Lynnea continues to run a fever of 101.1 and it looks like it might be climbing. The cultures that were sent yesterday are still pending.

Still Doing OK

Lynnea continues to do OK off from ECMO. Initially she spiked a fever of 101.1, but they managed to bring her temperature down with Tylenol and some ice packs. Even though it wasn't really unexpected for her to run a fever after coming off from ECMO blood and urine cultures were sent to the lab to check for infections, just to be safe. Now her temperature is 99.8, so it has come down some, and seems to be staying down. Her blood pressures have continued to fluctuate more than anyone really likes, this time dropping lower than they should (unlike earlier when they were a little too high), but this is most likely due to a fluid balance issue. Lynnea has been give lots of extra diuretics to help her flush out all of the extra fluids she received while on ECMO, and she may have gotten rid of more fluids than she really needed to, which causes a drop in blood pressure. So, she has been given some extra saline, and they have cut back on her diuretics to help balance things out. The plan for overnight is to try to wean her oxygen down a bit -- she's still on the ventilator, and while coming off ECMO, it was necessary to set the oxygen level at 100% in order to get her blood-oxygen saturation levels up to where they should be. Dr. St. Louis never wants Lynnea to stay on 100% oxygen any longer than absolutely necessary, so they have begun to wean her down a bit. She is currently on 80% oxygen, and her saturation levels are fine, but earlier when the nurse tried to turn it down to 70%, her saturations dropped a bit. Of course, this may have been due to the drop in her blood pressure that happened at the same time, but either way, they ended up turning her back up to 80%, and haven't tried to turn it down any more since then.

Off ECMO

Lynnea has been successfully taken off from ECMO, and seems to be doing OK. Her chest is still open, but rumor has it that they might try to close her up tomorrow -- I haven't talked to Dr. St. Louis since he finished taking her off ECMO, so I don't exactly know what the plan is. I will update sometime later this evening again, hopefully with a little more information.

Morning Update

After the wash out that Dr. St. Louis did yesterday evening, Lynnea's bleeding slowed almost to a complete stop, which is a good thing. Overnight her blood pressures were a bit unstable, without any obvious reason why. They are fluctuating more than they expected, and are a little higher than perhaps they should be. Dr. St. Louis is still planning on trying to take her off from ECMO later today, probably this afternoon. He still seems hopeful that this will go well, and he feels that if she is able to come off ECMO, things should stabilize even more.

Another Wash Out Done

Lynnea's bleeding remained fairly steady throughout the day, but increased a little again late this afternoon, and was leaking around the chest tube, so Dr. St. Louis decided to do another wash out of her chest. He also put a few more stitches in her aorta to hopefully slow the bleeding even more. This seemed to have helped -- her bleeding has slowed to around 75cc's per hour now, and her blood pressures remain pretty stable. Sometime tonight, the doctors might decide to put Lynnea on Heparin (a blood thinner) to make sure that she doesn't clot off her ECMO circuit, but Dr. St. Louis warned us that this will most likely cause her to bleed again. Even with the bleeding risk, he feels that it's probably going to be a necessary thing to do, and did not seem to be overly concerned about a little increased bleeding, as long as it doesn't get out of control. He is still planning on trying to take her off from ECMO tomorrow. He feels that her heart function still looks good, and is hopeful that her lungs will be able to handle things on their own. He has another case to do tomorrow morning, but he's hoping that it will be a short case, and he'll try taking Lynnea off ECMO sometime after that.

Wash Out Done

Dr. St. Louis finished doing the chest wash out on Lynnea. It went well. He put more stitches in her aorta, even though this was a risky move, he felt it was necessary. So far, it looks like it was the right thing to do. Her bleeding has slowed down to 100-150cc's per hour, which was an improvement over the 400cc's/hour she was losing before the wash out. They are keeping a close eye on her now to make sure that the bleeding doesn't begin to increase again. Her blood pressures also look better now than during the night.

Doing a Wash Out

Lynnea continued to bleed all night. It appears that her bleeding has slowed some, but it's still difficult to tell how much blood she's losing because she continues to bleed around the chest tube. They managed to remove the clot from the chest tube, and blood is flowing through it, but it is also bleeding around it. Her blood pressures are still a bit low, but a bit more stable than they were when she arrived in the PICU. Dr. St. Louis is now setting up to do a chest wash out. Her chest incision is still open because she's on ECMO. Doing a wash out will remove the clots that are building up in her chest and around her heart, which will make it easier for her heart to beat effectively, but it carries the risk of causing the bleeding to increase again.

Bleeding Continues

Lynnea's bleeding does not appear to have slowed much, if any, despite the extra medications. Unfortunately, she has managed to clot off her chest tube, which makes it impossible to tell exactly how much she is still bleeding because she is bleeding around the tube. The doctors are trying to suction out the tube now so that they can determine how much more medication to try giving her. Dr. St. Louis plans on doing a "wash out" of her chest first thing in the morning (probably around 6:30am) to determine whether more stitches are needed to stop the bleeding.

Still Bleeding

Lynnea continues to bleed 500-600cc's per hour, which is very bad. The doctors have discussed the situation and have decided to try a couple of new medications to slow the bleeding down, without causing her to clot so much that she clots off her ECMO circuit. Dr. St. Louis is still convinced that the bleeding is due to the stitches that he put in, rather than anything that is bleeding that he could improve by adding more stitches. He feels that if he goes in now, it would only make things worse.

Surgery Update

Lynnea has been in surgery since 7am, and shortly after 7pm they moved her out of the OR to the PICU. Dr. St. Louis replaced her B-T shunt with a larger one, and again did some repair work on her aorta. Things did not go as well as planned. For this procedure, Lynnea needed to be placed on the heart-lung bypass machine, which was planned from the beginning. Unfortunately, she had a difficult time coming off from bypass, and in the end was unable to come off successfully, and so was placed on ECMO (Extra-Corporeal Membrane Oxygenation -- essentially, a heart-lung bypass machine that can be used out of the OR -- she was on ECMO after her surgery last March as well). Her heart function looked pretty good, but her lungs were unable to handle the increased blood flow provided by the larger shunt. Dr. St. Louis is hopeful that a few days on ECMO will give her lungs time to relax and adjust to the increased flow; he's hoping to try to take her off ECMO on Wednesday. In the OR during the surgery, there was also a lot of bleeding that was difficult to control. While in the OR she was given five units of blood (that's about 2.5 times the amount of blood that normally flows through her body). Before moving up to the PICU, her blood pressures were much higher than Dr. St. Louis wanted them to be, so she was given medications to lower them.

Since moving up to the PICU, Lynnea has continued to bleed more than the doctors would like (she lost 400cc's in the first 40 minutes in the PICU), so she is continuing to receive a lot of blood products. The bleeding does not appear to be coming from any one spot, but rather a lot of oozing from everywhere that Dr. St. Louis stitched during surgery. Her blood pressures have also been unstable since moving out of the OR; they are now much lower than they would like, so they are adjusting her medications to try to stabilize them.

Surgery Begins

Lynnea spent the early morning in pre-op (we had to be at the hospital at 5:30am) and has now been taken the anesthesia team, so it looks like her surgery will actually happen today. Dr. St. Louis managed to make it to the hospital through the snow -- I saw him this morning while we were in pre-op, so I don't think there are any more excuses not to do this surgery today. I will update the blog again after the surgery, or sooner if I have any vital news before then. We are expecting the surgery to take 6-8 hours, so I probably won't update before late this afternoon.

Cute Hair!

Lynnea continues to enjoy her time at home, as we continue to wait for her surgery to actually happen. For the record, it is still scheduled for Monday, Feb. 8, at 7am, but there is still plenty of time for that to change, as we've learned from the multiple times that it has been rescheduled already. On Thursday we went to the U of M for her pre-op exam, and it went OK. She only had to have labwork, a chest x-ray, and physical exam -- she lucked out and did not need another echocardiogram or EKG done. She has been in a happy mood, though she tires easily these days. She thinks it's very funny to wear clippies in her hair and giggles a lot when you put them in for her.

Surgery Scheduled

Lynnea's heart surgery has been rescheduled for Monday at 7am. Tomorrow she has to go to the U of M for another pre-op exam.

How Many Times Can You Reschedule Surgery Before It Becomes Ridiculous

We just learned that a sewer line that runs above all of the operating rooms at the hospital burst, so they are all covered in sewage. Because of this, Lynnea's surgery for tomorrow is canceled, and will be rescheduled for either Thursday or Friday, depending on when this problem is fixed.

Yet Another Surgery Change

Due to Dr. St. Louis needing to perform an emergency surgery on another patient, Lynnea's heart surgery has been changed from Tuesday to Wednesday, Feb. 3, at 7am.