5 Months Old

Lynnea is five months old today. She had a pretty good day. This afternoon she was running a low grade fever, but it went away, and wasn't high enough to be too concerned about. She is no longer on any oxygen support, at least for now (we'll see how things go over the next day or so before we know for sure if she can go without it). During her time with the speech therapist today, she had a difficult time trying to suck off from a nipple, so we're still a long way from really going back to bottle feeding. Lynnea slept most of the day, but during the times that she was awake, she enjoyed sucking on her fists, and trying to get her thumb in her mouth.

One Step Closer to Home

Lynnea has moved over to 5A, which is just one step away from going home. She had another good day; she is tolerating weening off from her narcotics pretty well without any major withdrawal symptoms. She is off from her high-flow oxygen, but still requires some low-flow oxygen support (flow only, she's on room air). She is still full of smiles, and looks great.

Still Looking Good

Lynnea had another good day today. She is completely off from Precadex, which was the only thing that was keeping her in the PICU, so hopefully, we're still on for moving to 5A tomorrow. We were told today that the big things that Lynnea still needs to work on before we can go home are her feedings (ideally she could be bottle feeding before we go home, but at a minimum we would like her on bolus feedings at least during the day), and weening a few more of her meds down to a manageable amount to give at home.

Happy Birthday Ashlyn!

Today we had a birthday party for Ashlyn in the family lounge at the hospital. She enjoyed playing with her balloons, eating pizza and cake, and getting to play in the playroom. She was very excited about many of the gifts she got, but especially liked her Jack-in-the-Box. Unfortunately, we were not able to have her blow out candles on her birthday cake because it would have set off the fire alarms.

Lynnea also had a good day; tomorrow she should be completely weened off from her IV drips, so all of her medications will be given through her G-tube. The Speech Therapist continued working with her on drinking from a bottle, and today she managed to take a little without dropping her blood-oxygen saturation levels, which is exciting.

Still in the PICU

Lynnea gets to hang out in the PICU at least through the weekend; I think this has more to do with the availability of beds in 5A than her condition. This morning Dr. St. Louis was bold enough to throw the word "home" around as a possibility in another 10-14 days, so there's still a small chance that we could make it home before Easter. We still haven't heard any sort of longer-term plan for her, but I assume that this is because they need more information before they will decide what to do next.

Thursday

Lynnea had another good day, though I thought she was awfully sleepy all day. She had smiles for people, and managed to keep her saturations in a good place most of the time. There was talk during morning rounds about possibly moving her out of the PICU tomorrow and onto the general floor. They attempted to bottle feed her once today, which she seemed to enjoy; unfortunately, her saturations dropped while they were feeding her, so they decided that it's still too much work for her to bottle feed, so we'll stick with the G-tube feedings for now. It is reassuring though to know that she still has a good sucking reflex and is still able to coordinate the breathe-suck-swallow actions needed to bottle feed.

Another Good Day

Lynnea had another pretty good day today. She was full of smiles for just about everyone, and her nurse said that she almost giggled, but not quite. This afternoon she was taken off from Milrinone, and so far seems to be doing OK (they put her back on Digoxin and Captopril to take the place of the Milrinone) but tomorrow will be a better indicator of how she's tolerating that because Milrinone tends to stay in a person's system for a while. Tomorrow they will also be doing more weening off from the narcotics that she's on, so I expect things to be a little more difficult tomorrow, but we'll see.

Smiles

Today Lynnea had lots of smiles for just about everyone; she also had a few episodes of inconsolable crying, but I know she still has plenty of reasons to be miserable some of the time. They took out her arterial line today, so now she only has her PICC line. They talked about trying to take her off from Milrinone possibly by the end of the week. Overall, she had a good day. Snuggle time went better today than yesterday, and she took a nice nap in my arms this afternoon.

Holding My Baby

Today Lynnea was able to snuggle with me for the first time in a very long time. It didn't go as well as I had hoped, but in the long run she was somewhat tolerant of it once she got over the misery of being moved from the bed into my arms. Hopefully tomorrow we will have better snuggle time. Lynnea also had her chest tube removed today, her Pacer wires are out, and she's down to just her PICC line and an arterial line for IV's. She continued to keep her saturations at an appropriate level throughout the day. Her echocardiogram from yesterday showed some improvement in heart function, which is good news.

Grumpy Baby

Lynnea was extubated this morning around 7am. She's been doing OK off the ventilator all day, but she still needs some oxygen support, so she has a nasal cannula, and is on high-flow oxygen, which drives her nuts. She's been awake and a bit on the grumpy side all day, with good reason, of course -- I'm sure her throat hurts a lot after being on the ventilator with the tube down her throat for so long (Ashlyn called it a "yummy straw" when she saw it. . . someday Lynnea will have to explain to her that the ventilator tube is indeed not a yummy straw), and now that she's not sedated, she tries to move around some, which probably causes her chest to hurt. She keeps looking at me like she really wants me to pick her up and snuggle her, but I can't do that yet, and she doesn't understand. I tried giving her a Nuk, which she seemed to like at first, but then she became frustrated with it because she can't quite remember how to suck on it consistently. She had an echocardiogram this afternoon, but I haven't heard what the results were yet; they will probably discuss it in morning rounds tomorrow.

Troubles

Lynnea continues to hang in there, but she didn't exactly have a great day today. They decided to start to ween her off from some of her medications. She is now completely off from epinephrine, which is good news. She had a little more difficulty when they tried to take her off from her muscle relaxants and sedatives. When she woke up, she became very upset and wasn't tolerating the ventilator well at all -- the ventilator was set to do pretty much all of her breathing for her because, while she was so heavily sedated, it wasn't possible for her to breathe on her own. She tried to breathe against the ventilator, which is counterproductive, and caused her saturations to drop. Since no one really thought she was ready to be taken off from the ventilator completely, they turned down the rate that the ventilator was breathing for her so that it's now doing only a minimal amount of breathing for her. This isn't ideal, but so far she is managing to do most of the work of breathing on her own, and hopefully tomorrow they can take her off from the ventilator altogether. In order to help her stay calm, they gave her a different sedative that would hopefully have fewer side effects than what she was on before. The new sedative kept her calm, but relaxed her more than they had expected, so her heart rate and blood pressure were lower than ideal also today. And, to top things off, this evening there was a problem with the IV line that they have in her heart to monitor her CVP (Central Venus Pressure) and her blood pressure. . . instead of sitting in her right atrium like it's supposed to, it slid down into the right ventricle of her heart, so it had to be repositioned. I don't know exactly how this is done because I came into the room as they were finishing up, and didn't ask. Hopefully, the rest of her night is quiet and uneventful.

All Closed Up Again

This morning Dr. St. Louis closed Lynnea's chest up, and she has been doing well all day. She now only has one chest tube in, instead of two, and she has some Pacer wires in as a precaution (so far they have not had to use them). Tomorrow they will probably ease up on her muscle relaxants and sedation some to see how well she can handle that. They are also planning on resuming her feedings again tomorrow (they had to stop them today so that she could have the anesthesia that was necessary while they closed her up). Each little step of progress that Lynnea makes is something to be excited about and grateful for, and we continue to pray that she will continue to do well so that we can eventually go home.

It's Been Two Weeks. . .

It's been two weeks since I have been able to hold Lynnea. I really miss snuggling with my baby. Overall though, she had another pretty good day. She remained mostly stable, with the occasional drop in blood pressure, which was easily fixed with medications and blood products. The exciting news is that they started her back on very minimal feedings through her G-tube (only 3 ml/hour) but rather than giving her the Portagen that she had been on for nearly the past 6 weeks, they were willing to try giving her breast milk again. We'll see how that goes, but I'm really hoping that it goes well, and she can continue with that. The plan is still to close her chest up tomorrow sometime, probably later in the day.

Off ECMO

Lynnea was completely taken off from the ECMO machine this afternoon, and has been doing well ever since. Her heart is beating well on its own, and Dr. St. Louis is hopeful that this latest operation really helped improve things for her. Her chest is still open, but fortunately, she has a "real" bandage over it instead of just the tagaderm that looks an awful lot like Saran Wrap. Personally, I have a really hard time looking at her if she doesn't have a bandage on, and I would not have posted a picture with the tagaderm because it's pretty graphic. Dr. St. Louis is hoping to be able to close her chest up completely on Friday, as long as she is still doing well, and some of the swelling goes down. Since coming off from ECMO, her blood pressure has been pretty stable on its own, without a lot of help from medications. Everyone is quite pleased with how she is doing, and we are hopeful about her future.

Looking Better

Overnight, Lynnea began to bleed again, and bled a significant amount (60-100 cc's/hour) steadily throughout the night. This morning Dr. St. Louis did a wash out and was able to stitch up the spot that was still bleeding, and since then the bleeding has stopped, so she is pretty stable now. He said that her heart function seems to have improved quite a bit, and he will probably try to take her off from the ECMO machine tomorrow. This is excellent news, and we are excited about it, but we have also been warned that coming off from ECMO can sometimes be a difficult transition. We continue to pray that Lynnea will have the strength to make it through this next step.

Success. . .Depending on Your Definition

Lynnea's surgery is complete. She's still alive, so from that perspective, the surgery was successful. Dr. St. Louis was able to open up the area of the aorta that was obstructed. Unfortunately, there were some complications. In all fairness, these complications were not entirely unexpected, but disheartening nonetheless. For this procedure, Lynnea had to be placed on the heart-lung bypass machine again, which we knew going into it. When they tried to take her off from the bypass machine, it became clear that her heart was not going to be able to handle the work of pumping blood to her entire body on its own. So, for now she is on an ECMO (Extracorporeal Membrane Oxygenation) machine. Essentially, this is a heart-lung bypass machine that can be used outside of the OR. Because of this, her chest will need to remain open. She will be on ECMO for up to 10 days to allow her heart to rest and hopefully heal, but we were told by Steve (Dr. St. Louis' nurse) that generally, if the heart isn't able to function on its own after 2-5 days, it most likely will never recover enough to pump effectively on its own.

Obviously, we still hope that Lynnea's heart will recover on its own, but if it doesn't we will have to look at other options, and it looks like there aren't many options left for her, other than a transplant. Some people have asked us why a transplant wasn't done right away when we found out the extent of her heart defect. We were told at the time, that trying to do a heart transplant in an infant isn't a good idea unless there aren't any other options -- this is mostly due to the difficulty of getting an infant heart, and the fact that transplanted hearts in infants tend to only last about 10 years, making another transplant inevitable before they reach adulthood. In Lynnea's case, getting a compatible heart for a transplant is further complicated by the fact that her blood type is O Negative, which is rare. Right now, we are happy that she is still alive, and we pray that she will still make a recovery one way or another.

Surgery on Monday Morning

Corey and I just finished talking to Dr. St. Louis and signing the consent form for Lynnea to have surgery tomorrow morning at 7am. The plan for now is that Dr. St. Louis will take her to the OR and hopefully be able to make part of her aorta wider than it is right now. The part that he needs to work on is part of her native aorta, meaning that it is not the same part that he reconstructed during her last 2 surgeries. He says that it should not be too hard to get to the part he needs to work on, and that the risks involved in the procedure are relatively low (but again, it's still open-heart surgery, so it always carries some significant risks). He believes that the whole thing should take 4-5 hours. There is a 50% chance that he will have to leave her chest open for a few days after the surgery, but he is ideally hoping that he can close her up before she leaves the OR tomorrow. Like I said, this is the plan for the moment, but there are a few factors that could change this plan. The two main things that might change the plan are, if she runs a fever (other than the low-grade fever that she's been running for the past few days) between now and tomorrow morning, or if he opens her up and finds any sort of puss, he will not do the aorta reconstruction. In either case, he would still want to look around to see if he can find any source of infection in her chest cavity, and he would leave her chest open for a few days to keep an eye on things, and potentially let any infected fluid drain out, etc. So, whether he gets to do the aorta reconstruction, or not, tomorrow taking her to the OR should prove to be beneficial.

100 Days

As parents, we expect to have to make choices for our children on a daily basis; we choose which outfit will look the cutest on them, we choose whether or not they can have candy before dinner, we choose which pediatrician they should see, etc. Some choices have more of a lasting impact on their lives than others, but most are not life or death decisions, and making the "right" choice is less important than the fact that we are willing to take responsibility and make a decision in the first place. Lynnea has now been in the hospital for 100 days in her lifetime. We have been frustrated the past few days with the lack of options, and the lack of a plan for her future. Today Dr. St. Louis talked to me about finally coming up with a concrete plan for what to do next for Lynnea. He is willing to do surgery on her on Monday to repair the narrow part of her aorta. He feels that, this surgery could help improve Lynnea's heart function, and if we are going to do this, there is no reason to wait beyond Monday, but at the same time, he doesn't feel that this surgery will provide the miracle that we are all hoping for, so he is leaving the final decision up to us. Corey and I have spent the day talking about it amongst ourselves, and we will have another conversation with Dr. St. Louis about it tomorrow to answer a few final questions that we have before making our decision. We ask that you would all keep us in your prayers, praying that God would provide us with the wisdom to make the decision that is best for Lynnea.

Friday

The plan for today was that they would start to try to ween Lynnea off from the ventilator again. They are doing this very slowly, of course. So far, I guess she's been tolerating it, but since they're doing it so slowly, it's hard to tell. She was running a low grade fever on and off throughout the day. Her saturations were pretty good all day.

Mysterious Sock

Lynnea had another CT scan this afternoon. It showed that there is some narrowing of her aorta. Surprise, surprise. This is exactly what the last CT scan showed. And it's exactly what the heart catherization that they did last week showed. As of this afternoon when the doctors did their rounds, Dr. St. Louis hadn't had a chance to go over the CT results in detail, so as of now, there is no plan about what to do next. Her fever was down today. She is back on antibiotics, as of last night. They increased the amount of epinephrine that she is on. Her saturations have either been too high or too low throughout the day.

As for the mysterious sock. . . tonight as I was straightening the blankets on my lumpy cot, I found a lone Ashlyn-sized white sock, and I have to wonder, when did my daughter go home barefoot?

Not Doing the Heart Catherization

At 7:10am we were told that Lynnea's 8:00am heart catherization was cancelled for a variety of reasons, some sounding vaguely valid, while others seemed less valid. We're not really sure what the plan is from here. . . they're talking about doing another CT scan later today, but I wouldn't hold my breath since they like to schedule things and then change their minds several times before actually doing anything. . . all of this while Lynnea slowly becomes less and less stable.

Yet Another Heart Catherization

Lynnea will have another heart catherization tomorrow morning at 8am. Because of this, they haven't tried to ween her off from anything today -- they just wanted to keep things as stable as possible until then. Her temperature is up again, and her saturations are lower again. On a positive note, yesterday she tried to smile at me -- I say "tried" because it's pretty hard to smile at anyone when you're on the ventilator with a tube taped to your face, but she made a good effort, and I could tell that she was trying to smile.

Slowly Sliding Downhill

Lynnea's day overall was OK today, but her temperature was flirting with being feverish, her saturations sat a little lower than yesterday, and her hemoglobin was a little lower than they would like. So, they stopped weening her off from the ventilator for the time being, they increased the amount of oxygen she's getting, they gave her another blood transfusion to help her hemoglobin levels, and they started her back on epinephrine (for heart function). They talked about doing another heart catherization "sometime soon." I'm guessing they'll do one by the end of the week.

Moving Slowly

Today the doctors decided to begin weening Lynnea off from the ventilator, but they are doing it very slowly. They also decided to increase her feedings again (she had been on IV nutrition over the weekend). How well she responds to cutting back on the use of the ventilator will be a good indicator as to how well she is actually doing. Her temperature was fine again today, and the general consensus is that there is no infection at this time.

A Day of Rest

Today Lynnea had a restful day without any major changes or events. Her temperature was a little high -- sitting right around 100 most of the day -- but, since this is her core temperature, no one was really concerned; a little while ago it had come back down to 98.7. She was taken off from all of her antibiotics this morning, so it will be interesting to see if her temperature remains down and if her white blood cell count stays in the normal range. Her left leg seemed to be doing better today -- her foot had good color, good pulse, and it was warm to the touch today, which is really encouraging. Tomorrow morning the doctors will probably be discussing where they would like to go from here with Lynnea.

Pretty Stable

All things considered, Lynnea had a really good day. Her temperature remained normal all day. They took her off from her paralytic drugs, but they still need to keep her heavily sedated because she occasionally wakes up and begins to panic. Her saturations were in the range that they want them all day. Her blood pressure was a little higher than they would like earlier, but looked better this evening. We don't have any sort of plan for what they will do next yet -- for now they just want her to have a quiet, restful, "boring" weekend and they will begin to come up with a plan on Monday.

Test Results

So far, the results of all of Lynnea's tests have not offered any clues about a source of infection. The MRI of her brain looked normal. Her CT scan did not show anything unusual either. During an ultrasound, they found a gall stone, but with further testing, does not appear to be the source of infection. The echocardiogram that they did this evening did not show any significant improvement in her heart function. At this point, they have not done a spinal tap, though it sounds like it is still up for discussion and they may still do one at some point.
Even though they were not able to find any likely source of infection, the good news for the day is that her fever has been down and her temperature has been normal all day. This might suggest that there really isn't any infection after all, and the source of the fever could have some other explanation, such as the problems with her heart causing the fever, or the fever could be her body's way of reacting to everything that has been done to it. Regardless, the plan for the moment is to keep Lynnea on the ventilator and the cocktail of drugs that she is on to keep her asleep and paralyzed in order to let her body rest and heal at least until sometime tomorrow morning. Please pray that her fever remains gone so that she can regain the strength needed for whatever needs to be done next to help her heart function improve.

Still Alive

Lynnea made it through the night. She is essentially in a medically induced coma for the time being -- she is on continual pain meds, sedatives, and a paralytic drug so that her body doesn't have to do any extra work. She is relatively stable for the moment. During the night she did wake up enough to move all of her limbs, which was very encouraging. This means that neurologically speaking, she is probably in pretty good shape. Her left leg, the leg with the damaged artery, is still noticeably cooler than her right leg, and as of a few minutes ago, they were having a difficult time finding a strong pulse in the left leg.


The plan for now is to run a series of diagnostic tests on her -- an MRI of her head, a CT scan of her entire body, possibly an ultrasound of her belly, and they are discussing the possibility of doing a spinal tap. Right now the urgent goal is to find the source of her infection and hopefully treat it. If they are unable to locate the source with the tests they run today, Dr. St. Louis will have to open her back up to do an exploratory surgery of her chest early next week because there is still the chance that the infection is in her B-T shunt, or in her sternum, or possibly in some of the scar tissue. This infection is taking a serious toll on her heart, but unfortunately, until the infection is cured, more reconstructive heart surgery, or a heart transplant is not possible. Please continue to keep her in your prayers.

Done with the Heart Catherization

Lynnea managed to make it through the heart catherization. The blockages in Lynnea's heart were worse than they had really expected. Using a balloon, they were able to remove one of the blockages almost completely, part of another blockage, and there was one blockage that they were not able to remove with this technique because it was too severe. The blockage that they were not able to remove will need to be operated on, but she is not stable enough to do so at this time. There were a couple of complications during the procedure. First, when they were trying to remove one of the blockages, it was so tight that the first balloon they tried to use burst. Fortunately, they were able to get the entire balloon out, but there is a small chance that an air bubble could have formed as a result of the bursting, which could travel to her brain and cause a stroke. Second, because the first balloon burst, it was necessary for them to use a larger catheter to send a bigger, stronger balloon through. The large catheter that was necessary destroyed the artery in Lynnea's leg that they sent it through. Dr. Gruenstein explained that he has seen this happen before, and most of the time the body is able to compensate for this without any long term or permanent damage, but there is a chance that there could be stunted growth in the leg, or worst case, the loss of the leg, so for now, they will just watch it very carefully to make sure that there is still decent circulation in her leg.

Going into this procedure there was little hope that she would make it through it, so the fact that she is still alive at this moment is a miracle. The next 24 hours will tell us more about whether or not this heart catherization really helped her situation or not. Obviously, she's certainly far from out of the woods yet, but there is still hope that she will improve. They plan on keeping her intubated on the ventilator at least for tonight. Please continue to keep Lynnea in your prayers.

Emergency Heart Catherization

Lynnea took a drastic turn for the worse again this afternoon. They have just taken her in for an emergency heart catherization now. I will know more once they get in there and take some pictures; there is a very real possibility that she will not make it through the night, but we are still hoping for some sort of a miracle. Please keep her in your prayers.

The Plan For Now

Lynnea had a better day today than yesterday. She continued to run a fever all day, but it was lower than yesterday. Her saturations dropped whenever she became upset, but she was able to recover a little bit easier today than yesterday, though she still requires quite a bit of oxygen pretty much all the time. Here is the plan that her doctors came up with for now: This morning they started her on Milrinone to see if that will help improve her heart function some. Tomorrow, if all of the cultures that they ran yesterday are still negative, they will take her off from her antibiotics. They feel that there is a small chance that the fever could be caused by the antibiotics, though it is an unlikely side-effect of the antibiotics that she is on. Either way, they feel that the antibiotics aren't helping, so there shouldn't be any harm in taking her off from them for now. On Friday they are going to go ahead and do another heart catherization. I haven't heard a time yet, but hopefully they will be able to give me a time tomorrow morning when they do rounds. Dr. St. Louis feels that a heart catherization is the best way to get accurate information about Lynnea's heart function, and about the narrowing of her aorta. He is reluctant to believe that the source of her fevers could be an infection in her heart because if this were the case, then there should be signs of it in the blood cultures they have done, so at this point, he is hoping that the heart catherization will be able to answer some questions without actually having to open her up again at this time.

Topics Up For Discussion

Lynnea seems to have taken a turn for the worse today. Her fever was up to 103.6, which is higher than it has been before. Her saturation levels dropped into the 40's for a while today, and it was difficult to get them back up into the 60's even with the help of oxygen. They increased her oxygen flow to 4 liters, and had her at 55% oxygen, which is much higher than she has needed lately. She had another echocardiogram today, and the results weren't encouraging. Tomorrow morning her doctors (the pediatric ICU team, the cardiology team, and the infectious diseases team) are going to discuss her situation. They are afraid that her elusive infection might be in the part of her heart that she had reconstructed (her aorta -- more specifically, they are concerned about the B-T shunt that was placed) which would be a very, very bad thing. They will also discuss the results of her echo; the narrowing of her aorta that has been an ongoing concern may have gotten worse, and they are concerned about her heart function. They are considering putting her back on the drug Milrinone, which is used to help the heart pump more effectively (similar to Digoxin, which she's already on) and ease the symptoms of heart failure. Hopefully they will come up with some sort of a plan that will result in Lynnea getting better, one way or another.

St. Patrick's Day Party

Today there was a St. Patrick's Day party at the hospital (I have no idea why it was today rather than on the 17th). Ashlyn enjoyed the craft project and cookie decorating. She thinks that sugar sprinkles are pretty great (in the picture, it is hard to see just how much sugar she really poured onto her cookie).

Lynnea's condition remains the same. She ran a fever again today, she's still on oxygen, etc. Doctors from the Infectious Diseases team came to look at her again, but they didn't really have any suggestions; they will be back to look at her again tomorrow. One of her cardiologists said that they are beginning to consider the possibility of needing to do something surgically about her wound that just won't heal (though the wound-vac seems to be helping). At this point, this is still in the early discussion phase, but if things don't change for her soon, they have to do something different because she needs to get better, and obviously, nothing that they have tried so far has worked.

Back on Oxygen

Lynnea's time without her oxygen was short-lived. It's back on, the flow is up to 3 liters (it had been down to 2 liters) and she's on about 40% oxygen (she had been on room air before). Yes, this does feel like a set back, but maybe once she's truly feeling better she won't need it. Her fever was up again today, and she looked pretty miserable. She was restless, and clammy, and nauseous (she can't actually throw up because of the surgery that she had on her esophagus to solve her reflux problems, but she can make choking/gagging noises as though she's going to throw up). This evening her temperature had come down some, and she seemed to rest a bit more comfortably in my arms than she had been earlier today. Maybe tomorrow things will be better.