Difficult Discussions

Today was filled with difficult discussions. Corey and I met with some of Lynnea's doctors to discuss what we would like to do from here. Lynnea clearly showed everyone last night that she cannot handle the work of breathing on her own, and the primary reason for this still seems to be cardiac. There is nothing that can be done to fix her cardiac problems, so there is no way to make it so that she will be able to handle the work of breathing on her own. The decisions that now need to be made are 1. if we are going to take her off the ventilator again or not, and 2. if we do decide to take her off, when the best time to do that would be. Though no final decisions have been made, we will most likely elect to take her off the ventilator sometime in the relatively near future, after any family and friends that want have the chance to say goodbye to her.

I also had a conversation with Ashlyn tonight about the fact that it is probably almost time for Lynnea to go to heaven to live with Jesus. This was a very difficult discussion to have, but I felt that it was necessary to prepare her for this rather than not giving her any warning (she had already been asking questions about it, so it was an appropriate time to have this talk).

Back on the Ventilator

Around midnight last night it became clear that Lynnea could not handle the work of breathing on her own any longer, so we elected to reintubate her. She is relatively stable on the ventilator, but it is difficult to determine exactly where we should go from here because there are not any good options. Last night her respiratory failure appeared to be caused by several factors -- she was having a difficult time clearing her secretions, which is probably a neurological problem that may or may not get better with time, but there also seemed to be a cardiac issue as well, which will not get better with time, along with all of Lynnea's other pre-existing respiratory issues.

Still Off the Ventilator

Overnight last night, and throughout the day today, Lynnea has continued to really struggle to breathe on her own, but since she is still managing to keep her SATs up, and her labs aren't getting much worse, we've decided to continue to wait it out for now. It is difficult because it is still so unclear whether her breathing is going to get any better or not. We did a lot of snuggling in the rocking chair today, which was nice for both of us. Corey was here and also got a little bit of snuggle time in with Lynnea.

Extubation

Lynnea was taken off the ventilator this afternoon around 3:30. She was put on high flow oxygen support at 8 liters of flow, 100% oxygen (which is something rare for her -- typically we don't like her on more than 60%), which is a lot of extra support. The first two hours were pretty rough, but the doctors and I agreed that it would be best to wait it out as long as we possibly can to give her the chance to clearly show us whether or not she can handle the work of breathing on her own. Now, she is still working really, really hard to breathe, but her SATs have stayed up, and her blood gasses haven't looked terrible, and we've managed to wean the oxygen down to 60%. It is still a bit too soon to tell if she's going to make it through the night without needing to be reintubated, but I'm hopeful that she might do it. Today she also spiked a fever, and her white count is up again, so they started her back on her antibiotics (blood and urine samples were sent, but they decided to start the antibiotics without waiting for the culture results because those can take several days). This evening I was able to hold her in the rocking chair for a couple of hours, which I think she liked -- she seemed to be a little less fussy when I was holding her, and when she would cry, it was a little bit easier to get her calmed down again.

There was a party in the family lounge this evening that Ashlyn enjoyed. She made an awesome visor (to go along with her awesome hat and awesome t-shirt that she has made at other hospital parties), and she enjoyed a root-beer float.

A Plan

We chose not to try to take Lynnea off from the ventilator today. There was no real reason from a medical standpoint that we couldn't attempt it today, it was simply more about timing. I had a discussion with one of the doctors this morning about how we would like to proceed from here, and I pointed out that it would be great if we could wait to extubate until tomorrow for Corey's sake. He has Tuesdays and Wednesdays off from work, so if we tried tomorrow afternoon, he could be around for the next couple of days to see how things go without having to sit at work, potentially waiting for a call saying that she isn't doing well. So, barring anything unexpected with Lynnea between now and tomorrow afternoon, we will attempt to take her off then.

The doctor also asked me about Lynnea's code status, and I told him that Corey and I had made the decision that, if she goes into cardiac arrest again, it would be best for Lynnea to just let her go. So, if she codes again, they will not resuscitate her. We know how much she has suffered already in her short lifetime, and if her heart stops again, it would only bring her more pain and suffering to try to bring her back.

Waiting

This morning in rounds, we talked about extubating Lynnea today. Then we discussed the fact that it she might not be tolerating her feeds (she was only on 9mL/hr) so it was decided that it would be a good idea to turn off her feeds for 24 hours to see if that made things any better. Since extubating her would add another variable to the equation, we decided to wait to extubate her. At this point another day one way or the other probably doesn't make much difference. She seemed to have a more difficult day today than the past few days -- less movement, lots of crying for no apparent reason, difficult to calm her, etc.

Waiting to Extubate

The plan was to attempt to extubate Lynnea today, but this morning she had a few episodes where she dropped her SATs pretty low and had a difficult time recovering, so it was decided that we should wait at least one more day before trying to take her off from the ventilator. Other than dropping her SATs, Lynnea had a fairly uneventful day. She has not shown anymore improvement in her neurological status -- she doesn't seem to have many purposeful movements, she doesn't appear to really see anything when her eyes are open, and she doesn't show any sort of clear recognition of me or anyone else. The doctors do not hold out much hope at all of her recovering from this at this point, considering how long it has been since her cardiac arrest, she should have shown more improvement than this by now.

EEG Results

Today Lynnea had an EEG to determine if she is having any seizure activity. She's not. But, the EEG also confirmed what the MRI showed: there is not a whole lot of normal brain function going on.

Tomorrow the plan is to attempt to extubate her to see how she does without the support of the ventilator.

Minor Changes

Today Lynnea's ventilator settings were weaned down even further; technically, her current settings are considered settings that are appropriate for an extubation attempt, but there is no big rush to extubate her. At this point they haven't begun doing any pressure support trials with her, so they most likely won't actually attempt to extubate at least until tomorrow afternoon sometime. There are several reasons not to rush to extubate her, one important thing being that they are giving Corey and me some time to discuss how we would like to handle things if extubation doesn't go well -- do we want them to reintubate, or would we rather make a conscious decision at this point to just let her go -- and the truth is that for us at this point, it is a little too soon to make that kind of decision.

One of the things that makes a decision like that extra challenging is the fact that no one can give us any real indication of how much of a recovery Lynnea will make from a neurological standpoint, or even if she will recover at all; there is no way for anyone to know whether or not we will ever truly be able to get "our Lynnea" back, and there is no way to know at this point if fighting to keep her alive no matter what is simply prolonging her suffering, or if there is a chance that we would be able to have more meaningful time with her. These are things that simply cannot be predicted.

There were not any huge changes in Lynnea's condition today, but I certainly noticed some small ones (exactly what they mean for her long-term outcomes are impossible to tell). She moved more today than she did yesterday. Today I definitely saw her move all four of her limbs several times, and not only was the number of times she moved more than yesterday, but the amount that she moved each limb was more than yesterday. It was still not clear if these were purposeful movements, or if they were still primarily reflexive, but she moved. She had her eyes open today and yesterday. Yesterday she clearly did not "look" at anyone, or anything -- she just stared ahead and her eyes didn't move -- she didn't track objects, and she didn't move towards the sound of a voice. Today her eyes moved more, and this evening I got the feeling that perhaps she was trying to move them towards the sound of voices, though it was not clear enough to know for certain. She still seems to have a lot of pain in her left leg which has a blood clot, and it is very sore from the several attempts that it took to put in an IO while she was coding. It is still very sore today, though she didn't cry every single time it was touched today.

We all appreciate all of the prayers during this time. The doctors do not hold out a lot of hope for her to recover her neurological function, but there is still a small chance that she could recover some of it, and for God, this is not something beyond his ability -- nothing is. For now, there is no talk of evaluating her for a heart transplant because, in her current condition she is not eligible for transplant. If her neurological function improves, it might be possible to consider her for transplant. From a cardiac standpoint, she does not have a lot of time left with her current heart -- no one can say for sure how long, but most likely only weeks, possibly a few months. The decisions that Corey and I are being asked to make about how we would like to proceed from here are very difficult ones. Please continue to pray for healing for Lynnea, but also wisdom, strength, and comfort for us as we face these decisions head on.

MRI Results

This morning I talked to the neurologist about Lynnea's MRI results. The MRI showed that there was brain damage, and that it is global -- both sides of her brain were damaged. He said that it is impossible to really predict exactly how much she can recover from this, but he explained that the parts that were damaged effect her motor control, so she will most likely have difficulty moving her limbs, and there could be some loss of cognitive abilities as well, especially language. He pointed out that, since she was already a bit developmentally delayed coming into this cardiac arrest event, this will definitely set her even further behind, assuming that she is able to recover much at all. He also said that the part of her brain that controls her ability to breathe on her own was not effected, so there is no reason, from a neurological standpoint at least, that she would not come off the ventilator at some point (obviously her respiratory issues might make it challenging, but that's a separate issue).

As far as a treatment plan for today goes, today they were able to start weaning her ventilator settings so that eventually they can try to extubate her (there's no huge rush for this, so they are not being overly aggressive with the wean), and they started her on a new med, Neurontin. Overall, she had a stable day. Her kidneys and liver have recovered nicely from the cardiac arrest and they both seem to be working fine now.

Obviously, the MRI results were very discouraging, and not at all the news that we wanted to hear. For now, we will keep praying that she recovers as much of her neurological function as she can.

Not Much Change

Lynnea had an MRI this afternoon, but we have not heard any results from that yet. She spent most of the day off from Vec. She managed to keep her SATs up even when she was over-breathing the ventilator, which is good, but she also did not move very much, or show any signs of really waking up, or anything else that would have been encouraging. She was stable all day, and managed to come off from her Epi drip completely. They are keeping her on Milrinone for now. Hopefully we will know more tomorrow.

A Little Discouraged

The good news for the day is that her labs to determine liver function from this morning look better than yesterday, and she is off from one of the heart medications she was on (Vasopressin) and she is now only on a tiny bit of Epi (0.02). She is still on Milrinone, but no one is talking about weaning that at this time.

It appears that she probably has a blood clot in her leg from where they tried to put an arterial line in after she coded. They have started her on a Heparin drip to hopefully clear this up.

They attempted to take her off from Vecuronium this afternoon, and it didn't really go very well. She tried to over-breathe the ventilator, and when she did, her SATs dropped drastically, so she was given more Vec. Also, when she was off from the Vec, she did not have much intentional movement of her limbs (possibly some, but not much), she cried much of the time, and she did not appear to show any signs of actual awareness when her eyes would open a bit. Even though there is still a chance that things will improve over time, this was not nearly as encouraging as I had hoped.

Very Cautiously Optimistic

Lynnea was a little unstable again overnight last night (dropping her SATs) and ended up on a Vec drip (a paralytic) to keep her from shivering and trying to over-breathe the ventilator. Today she was pretty stable all day. They didn't do anything with her today because they wanted her to have another day to rest and recover. Tomorrow the plan is to warm her up again (they continued to keep her cold today), take her off from the Vec drip, ease up on her sedation, and try to wake her up a bit so that they can begin to do a neurological assessment on her. If it turns out she has suffered significant brain damage, there would be no options left for her from a cardiac standpoint. If it turns out her brain function is intact, then I believe we would go back to talking about the possibility of a heart transplant.

There are some things that give us reasons to be very cautiously optimistic that maybe she didn't suffer too much brain damage. So far her kidneys seem to be functioning OK, and this morning they drew labs to check her liver function and the results were not as bad as they had expected them to be. This shows that her liver and kidneys probably received adequate oxygenation during her cardiac arrest, and it logically follows that her brain then also probably received adequate oxygenation during the arrest, and her brain function may still be OK as well. But, of course, we won't know anything for certain until we wake her up and run some tests.

Not A Lot Of News

Lynnea managed to make it through the day without any major episodes of instability. Things are still very tenuous, but for the moment she is holding her own. They did an echocardiogram earlier today, and unfortunately, the results showed that her heart function is a bit worse than it was on her last echo. This is bad news, especially considering that she is now on some heavy hitting medications to improve her heart function, and yet, even with the medications, her function is quite poor. There is no plan for where we go from here at this time. Before anymore decisions are made, we have to wait and see how she is when she wakes up from all of this, which could take a few more days at least. The question that needs to be answered is how much brain damage she suffered during her cardiac arrest. Even though there are small indicators that give us some hope that she might be relatively OK, it is still far too soon to know anything for sure. For now, they are intentionally inducing hypothermia because some research suggests that this might help protect the brain and other organs from permanent damage while the body recovers. Within the next day or so I believe they plan on doing a head CT to see what that shows. Once we have a better idea of where she is at from a neurological standpoint, we will be able to make some decisions regarding the plan about what we might do for her. She needs many prayers as she continues to fight to keep her heart going, and as she recovers from last night's cardiac arrest.

Code Blue

Last night around 11:45pm Lynnea coded. They did CPR on her for about 20 minutes, gave her six code doses of Epi, and shocked her twice before managing to get a heart rhythm back. They also intubated her, so she is back on full ventilator support. She is still on a high dose of Epi (the "normal" range for an Epi drip is usually 0.05-0.08, she is currently on 0.2) and she is also on IV Milrinone. During CPR, strong pulses were felt in all four extremities, so the belief is that she had decent blood flow to the brain. Her pupils have been reactive, she moves all four extremities, she has tears, and she occasionally over-breathes the ventilator -- all of which are good signs that there hopefully was no serious brain damage.

The plan for today is to do an echocardiogram, and try to formulate some sort of plan from there.

Ambulance Ride

Lynnea had another rough night last night, and she continued to struggle today, and by this afternoon she clearly wasn't doing well at all. So, we took an ambulance ride back to the U of M and she was admitted to the PICU again. She is back on high flow oxygen (6 liters, 40%), and still struggles to keep her SATs up. They did a chest X-ray thinking that she may have collapsed a lung, but her chest X-ray actually looked pretty good, so that wasn't the problem. They will probably do an echocardiogram tomorrow; her heart function has probably gotten worse, which is what is causing all of her problems. If this is the case, there is not much that can be done about it. For tonight the plan is to keep her on the high flow, put an IV in to give her some IV fluids (she was too upset when we got here to put an IV in, but now that she has calmed down some, they will probably try to put one in sometime soon), and just keep an eye on her. We should know more sometime tomorrow.

Grumpy Day

Lynnea ended up back on oxygen in the middle of the night last night, and we were not able to wean her off from it until this afternoon. After dinner, she needed it on again, and shortly after putting her to bed we turned it off, though she is already dropping her SATs some and I won't be surprised if I need to turn it back on at some point during the night. This morning Lynnea was extremely grumpy when she woke up and spent the first couple of hours of her day screaming at everyone. Even though it was still technically a little too humid to take Lynnea outside, we took her for a walk anyway simply to try to calm her down. She was calm as long as she was in the stroller and it was moving, so we kept her out as long as we could, but when she started dropping her SATs despite being on extra oxygen, we had to take her back inside. That made her mad. She continued to be in a pretty grumpy mood until this afternoon when she finally decided to give me some of those adorable smiles that I look forward to seeing everyday. She and Ashlyn both did some finger painting this afternoon. Ashlyn loved this. Lynnea did not. Ashlyn also enjoyed playing "dress-up" and I think at one point her goal was to get as many of her dress-up clothes as she could at once.

Tired of Rainy Days

Both girls are very tired of the rain. They both asked repeatedly throughout the day today to go outside, and of course, I had to turn them down because of the rain. Hopefully the weather will cooperate with their ideas of fun sometime soon.

Last night Lynnea had another rough night, and I spent much of the night up with her. She dropped her SATs a few times, had really low heart rate a few times, had a really high heart rate a few times, was working harder than normal to breathe, and was generally difficult to console when she woke up during these episodes. Maybe tonight will be better.

Girls' Duet

Lynnea continued to need oxygen off and on throughout the day today because her SATs were low. Her heart rate was mostly stable though. This afternoon Ashlyn and Lynnea both wanted to play the piano, so we let them play together. It was pretty cute. We also went for a walk this afternoon because the rain let up long enough for us to go out, but we had to make it a short walk because the humidity is really hard on Lynnea.

Still A Little Unstable

Lynnea did pretty well overnight last night; she went to bed on some oxygen, but I was able to wean her off before I went to bed a few hours after her, and she slept well all night long. This morning she again needed some extra oxygen support, and her SATs have been a bit low all day long, though she went to bed tonight without any extra oxygen. Hopefully she will have another quiet night.

Another Rough Night

Last night Lynnea had another rough night. We no longer have nursing around the clock, so I had the fun of dealing with this myself. She had problems from about 3am on. First she dropped her heart rate much lower than is normal for her, but she managed to pull it back up again. Then her heart rate was climbing higher than we like to see it, so I took her temp to make sure she wasn't spiking a fever. She wasn't. But, at 3:30am I decided to give her Tylenol anyway, just in case, and because she was pretty agitated and I wasn't able to calm her down, so I thought that maybe she was in some pain and the Tylenol would help with that as well. After that she fell asleep again, and dropped her heart rate really low again. So, I switched out her oximeter probe, and moved it to a different location, just to make sure that all of the readings I was getting were accurate, and not due to some equipment malfunction. They were real. And, by then her SATs were running low again, and not coming up on their own. At 4am I gave her a nebulizer treatment hoping that it would help. It didn't. At 4:15am I had to put her on oxygen. That helped a little bit, but didn't really bring her SATs up a whole lot, and her heart rate continued to jump all over the place, climbing much higher than is good for her. By 5am when things hadn't really settled down, I ended up calling the U of M and talking to the on-call cardiology fellow to see if they wanted me to bring her in to the hospital, or if there was something more I could be doing for her at home. They understood why I was concerned, but decided that we should try to wait it out at home for a little longer before bringing her in because there probably wasn't much more they could do for her at the hospital than I was already doing for her at home. Around 6:45am, Lynnea finally managed to fall asleep again, and slept peacefully until around 8am, only dropping her heart rate briefly a couple of times during that time. After that she was doing better, and by noon we had weaned her off from her oxygen again. She was stable most of the day, but tonight after bathtime, she dropped her SATs again, and is on oxygen again. I'm hoping that she does better overnight tonight.

Another Rainy Day

Again the weather didn't cooperate with going outside for a walk or to swing, so Lynnea was disappointed. To help her cope with this, Grandpa Peter was kind enough to help us hang an swing indoors for her to use when the weather is icky. She liked this. Ashlyn and Lynnea also both enjoyed doing art indoors today -- Ashlyn was into cutting and gluing, while Lynnea preferred tearing paper. Overall, both girls had a pretty good day.

Another Cardiology Visit

Well, we were sent home after today's cardiology visit rather than ending up back in the hospital, so I guess it was a good visit. Again, nothing really surprising from this visit. We were told that the team in Boston wants to do more testing before they will be able to determine if there is anything left that they could possibly do from a repair standpoint for Lynnea, so getting a trip to Boston lined up "sometime soon" is in the works because the testing would need to be done there. The stuff that they will most likely do is stuff that Lynnea has been through before (heart cath, MRI, etc.) but the team in Boston has more resources to get the specific type of information they are looking for, rather than having more of these tests done here at the U of M. Specifically they would be looking to see exactly how much of Lynnea's pulmonary veins are completely closed off, and to get a better look at how much and how badly her aorta is obstructed. Even if it turns out that there is nothing they can do from a repair standpoint, it would be useful to have this type of information when she is being evaluated for transplant as well, so regardless of the outcome, it probably wouldn't be a waste of a trip. The plan would be to go out to Boston for the testing, and if they determine that there is a repair that the surgeon there would be willing to attempt, we would end up staying there for surgery, which could mean a very long stay considering how long Lynnea typically takes to recover from her major heart surgeries. So, now we are working on getting everything approved from a Medical Assistance standpoint to make sure that the trip would be covered; once that is all in place, we can go. I'm assuming that since Dr. Kochilas had us schedule another follow-up visit with him two weeks from today, he doesn't anticipate that we would leave before then, but I'm also guessing that it might not be long after that when we would go. Lynnea also had some labs drawn today to assess several things, including her antibody levels as a part of evaluating her for transplant -- we are moving forward with that evaluation right now as well so that we have a realistic view of what all of our options are.

Rainy Day

Lynnea was very crabby most of the day today. Some of the crabbiness came from the fact that she continually asked everyone in the house to take her outside because she wanted to swing, and she would get mad every time we had to tell her that we couldn't go out because it was raining. She didn't need any oxygen during the day today.

This evening Ashlyn and Lynnea both played out on the deck for a little while, even though it was wet out (it stopped raining long enough so that they could go out), just because they both really wanted to go outside. They had fun, and it improved both of their moods a little bit.

Tomorrow we will be going to the U of M for another cardiology appointment.

Fun Outdoors

Lynnea's SATs have been a little low the past couple of days. During the day today she managed to keep them up in the 70's most of the time, which is where we like them, but at bedtime she dropped into the 50's and ended up back on oxygen. Other than that, she's been doing OK.

Today we spent a lot of time outside because Ashlyn and Lynnea both wanted to be out there. We went for a walk this morning, this afternoon Lynnea played in her swing while Ashlyn played on the slide. This evening we had a bonfire and roasted hotdogs for dinner and had s'mores for dessert. While Corey was building the fire, the girls played on the deck. Ashlyn blew bubbles for Lynnea. Then Lynnea wanted to get out of her rocking chair and lay on the deck to play with her toys. Ashlyn colored some rocks with her sidewalk chalk. They both had a lot of fun. During dinner, Lynnea ate potato chips. She didn't gag on them, and took several bites; I don't know if she ever actually managed to swallow any of the pieces she kept biting off, but at least she put them in her mouth and tried to eat them, which is more than she will do with most foods.

Rain Boots

Lately Ashlyn has had a fascination with shoes, and she seems to feel that Lynnea should also share in this. So, Ashlyn likes to find all of her too-small shoes and try them on Lynnea to see if they fit her. Since Lynnea has never really worn shoes, her tolerance for this activity varies. Today Ashlyn thought that Lynnea should wear rain boots, so she tried to put them on Lynnea. Lynnea put up with this, but once they were on her feet, she began signing "all done" and pulled them off. It was pretty cute.

Other than still being a bit on the grumpy side much of the day, Lynnea had an OK day. Her SATs dropped some for a while before her nap today, but not low enough to require oxygen. She continues to cough and sneeze a lot. She has also been rubbing her fingers in her mouth again, and I believe she is teething again, which would explain some of the grumpiness.

A Day with the Girls

Today both Ashlyn and Lynnea were on the grumpy side of things. Ashlyn woke up this morning in a difficult mood and declared that she was having a "naughty day." Lynnea was difficult to please much of the day, and having her blood drawn again, and then not taking a decent nap all day made her all the grumpier. Fortunately, we managed to have a few fun moments despite the negative moods. Both girls enjoyed playing with Play-Doh for a while, and Ashlyn loved playing in the sprinkler this afternoon.

The Nursing Situation

You might not be a good nurse for Lynnea if...

...you don't know how to work a feeding pump.
...you don't know how to work an oximeter.
...you don't know how to read a med sheet.
...you don't know how to change a diaper.
...you don't know how to give meds through a G-tube.

And those are just a few of the issues we've had with nurses over the past two weeks. We are now in the process of switching homecare agencies because we feel that we shouldn't have to be more worried about Lynnea's health and well-being when we have a nurse in the house than when we don't have a nurse in the house.

Lynnea had another good day today. She and Ashlyn enjoyed going for two walks today because the weather was so nice (not too hot, not too cold, and not too humid to take Lynnea out). Again Lynnea managed to make it through the day without needing any extra oxygen, though she's still coughing a lot.

Playful Days

Lynnea has had a couple of good days, for the most part. She gets tired easily with any exertion and then tends to drop her SATs for a bit, but has managed to not require any oxygen. She still has a pretty nasty cough, and is having a difficult time getting over her cold (which is nothing really surprising or new). She still seems to really enjoy her time at home, playing with her toys, playing with her sister, and getting to spend time with both Mommy and Daddy.