8 Months Old

Lynnea is eight months old now. She had a pretty good day today. She was in a better mood than yesterday, so I'm guessing she's feeling a little bit better. This morning they pulled out her chest tube, and removed her A-line, and her IJ (the line in her neck through her jugular vein), so all she has now is one peripheral IV in her hand (which we're really hoping doesn't go bad before Thursday). She moved out of the PICU back over to 5A this afternoon, and she seems happy to be back (we're in the same room that we've been staying in for the past two weeks, so it probably feels pretty familiar to her). She had another echocardiogram today, but I haven't heard any results from that. She has a CT Scan scheduled for Thursday (which will require and IV, which is why we hope the one she has lasts that long), so we will be in the hospital at least until then. She is still on a tiny bit of oxygen support, but hopefully she won't need that for much longer.

Recovering

Lynnea spent the day recovering in the PICU. She will probably be moved out to the general floor tomorrow. She was taken off from the ventilator a couple hours after moving out of the OR up to the PICU. She is still on some oxygen support, but seems to be doing pretty well (she absolutely hates having the nasal cannula in again though). She's been pretty grumpy since she woke up from the anesthesia, but this isn't particularly surprising. This evening, she was feeling pretty spunky, and managed to ruin one of her peripheral IV's by kicking her legs so hard. She bled all over her blanket, but she's fine now. She still has her arterial line in, and her chest tube is still in. I believe the plan is to pull these sometime tomorrow. They have slowly re-started her G-tube feeding at a slow rate with unfortified breast milk. Hopefully she will manage to get some good rest overnight and have a good day tomorrow.

Out of Surgery

We talked to Dr. St. Louis a short while ago. The surgery went fine. After doing a bunch of diagnostic testing -- looking at pressures in her heart compared to pressures elsewhere in her body -- St. Louis concluded that there was no reason to do any aortic arch repair; her aortic arch is as good as it's going to get for now. So, since he didn't need to do any reconstruction, he didn't need to go in through her sternum again, instead, he went in through a small incision in her side. He pulled her aorta away from her pulmonary vein, but he's still not convinced that it really did much good as far as helping increase the blood flow through the vein. She will have another CT scan in a few days to determine whether this procedure did any good. Most likely, St. Louis will still end up reconstructing the pulmonary vein at the same time that he goes in to do her Glenn procedure. This will make that surgery much more complex than it normally would have been, but he feels that it's probably better to do it all at once rather than doing it as two separate procedures. It sounds like we will probably have all of that done sometime later this summer.

Surgery in the Morning

Lynnea will have another heart surgery tomorrow (Monday) morning at 7am. Dr. St. Louis plans on reconstructing the part of her aortic arch that is still a bit too narrow, as well as repositioning the aorta slightly so that it is not pushing against her pulmonary vein (I learned the other day that Lynnea only has one pulmonary vein, not two, like most people. . . just an interesting little tidbit). His hope is that, by moving the aorta, the blood flow in the pulmonary vein will no longer be blocked, which would eliminate the need for him to reconstruct the pulmonary vein in the future (he says that if it needs to be reconstructed, he would be able to do it during her next surgery, which should be the Glenn procedure). He expects the surgery to take about four hours. She will be placed on partial bypass, which is significantly less risky than complete bypass. Overall, the procedure is relatively minor compared to some of the other surgeries that she has had, and Dr. St. Louis expects it to go well. I will keep everyone updated throughout the day tomorrow.

Surgery on Monday

Lynnea had another pretty good day. This morning she was in a good mood -- lots of smiles for the resident doctors during rounds, and she was even fairly tolerant during her echocardiogram. This afternoon she was fussy, but overall appears to be doing well. She is still off from the oxygen, and has been doing fine. I had a conversation with Dr. St. Louis this afternoon about possible surgical options for Lynnea. He has booked the OR for her on Monday morning (I'm not sure if it would be a 7am or 8am start time) but he still hasn't made a final decision about exactly what he plans on doing to her. Corey and I have discussed it (because Corey was at work when I was talking to Dr. St. Louis) and we will discuss it further with Dr. St. Louis over the weekend and come up with a concrete plan.

The Wizard of Oz

Lynnea had another OK day. She is off the oxygen completely for now. So far, she has managed to keep her saturation levels up, except for a few dips into the low 60's this evening that didn't last very long. Tomorrow we should find out more about when she will have her surgery, and what exactly they plan to do (I guess there is still some discussion about whether, or not, they really think that they can fix her problem without actually reconstructing her pulmonary veins).

This evening, my parents stayed at the hospital with Lynnea while my brother, Tim, took Ashlyn and me to a HopeKids event. We went to see The Wizard of Oz musical put on by Stages Theatre Company in Hopkins. It was fun. I enjoyed getting to spend some much needed quality time with Ashlyn, and it was good to get out of the hospital for a little while.

Tired and Queasy

Lynnea's saturation levels continued to stay up today. Unfortunately, she was very lethargic all day, and she's really not tolerating her feedings well. The doctors don't seem to have any good explanations for the feeding problems, and I haven't talked to them about how incredibly tired and sleepy she was all day. The rumor about her surgery is that it might happen next Monday, but no one is willing to give a concrete date/time just yet.

Still Waiting. . .

Lynnea has been keeping her saturation levels up throughout the day yesterday and today, which is very encouraging. She is still on a little bit of oxygen support, but most of the time she has her nasal cannula places other than in her nose (she's a big fan of only having it half in, and she still frequently manages to get it out of her nose entirely). She appears to be feeling better overall, and, now that she's feeling better, she's tired of hanging out at the hospital. She appears to be bored, so the nurses and I have had to continually find new ways to keep her happy. Today she spent time in the infant swing (which is something she often enjoys, but with all of the extra cords and wires that she's hooked up to in the hospital, it can be challenging to get her in and out of it, so I don't use it unless I'm pretty desperate), and we found a bunch of new toys for her to play with. She is constantly trying out new positions to lay in her crib as well; laying sideways is a favorite, and earlier today she took a nap laying upside down (which is kind of funny because the head of the bed is raised to help her breathe easier). We are still waiting for a surgery date; everything we've heard is that the plan is still to do it sometime next week.

The Low Saturation Levels Continue

Lynnea has been dropping her saturation levels more and more frequently over the past two days, which is a big concern. Last night, she was up several times coughing, and then her saturations would dip down into the 50's, and it was difficult to get her to settle down and go back to sleep (which is pretty unusual for her). She is also beginning to show signs of not tolerating her bolus feedings again -- she started to gag and spit up during a few of her feedings today. Dr. St. Louis stopped by this morning during rounds. Even though all of her viral cultures came back negative and her blood work looked good, he is still worried that the cough she has is due to some sort of illness, so he's hesitant to operate on her in the near future. At the same time, he is also very concerned about her low saturations and increased work of breathing, so he knows that she needs surgery soon. His plan for right now is to watch her closely over the next couple of days and then decide when the best time to operate would be.

Feeling a Little Bit Feisty

Lynnea seemed to be feeling a little bit better today -- she and I played several rounds of "where does the nasal cannula belong" throughout the day; she thinks that it belongs in her hand, or on the top of her head, and I think it belongs in her nose. Obviously, in the end, I always win out, but that doesn't seem to stop her from giving it her best shot. Overall, she had a pretty good day, until this evening when she decided to drop her saturation levels into the low 50's again around bedtime. There doesn't seem to be any obvious explanation for it (for instance, it's not happening just because she's upset or anything), which makes it a little scary. In the end, they just end up turning her oxygen up for awhile until her saturations come back up, and then the slowly turn the oxygen back down.

Blood work was done a couple of days ago to see if her white blood cell count was elevated (a sign of infection). Everything looked normal. So far, all of her viral cultures have come back negative. Without any concrete sign of infection, the plan for now is to try to see if Dr. St. Louis has any openings in his surgical schedule either late next week or early the following week for her. I believe the feeling among the cardiology team is that her symptoms are probably all cardiac related (probably heart failure, though no one is actually saying that yet because her last echocardiogram still looked OK) and operating on her sooner rather than later would be the best thing for her.

Anticipating a Long Hospital Stay

Lynnea's day today was very similar to yesterday: she was crabby, her saturation levels were low, she's on oxygen, and she gets very mad every time the nurses try to check her vitals. This morning Dr. Lohr told me that we should be prepared for the good possibility of needing to stay in the hospital until Lynnea is able to have her next surgery, which she probably won't be healthy enough to have for at least a couple of weeks. Honestly, I can't say that this news was particularly surprising, though I'm not really looking forward to spending the greater part of the summer sitting around at the hospital. But, of course, I want what's best for Lynnea, and if she's not stable enough to be at home, then I wouldn't really want to be the one responsible for taking care of her at home anyway. I do think it's a little bit ironic that yesterday I was still trying to convince some of the doctors that she's really sick, and today she's suddenly sick enough to require an extended hospital stay. . . I have a feeling Dr. St. Louis may have had something to do with that, and I'm guessing that he probably wasn't too pleased with some of his colleagues for not taking her symptoms more seriously to begin with.

Gee, Maybe She Has a Virus

Not much new today with Lynnea. She continues to drop her blood-oxygen saturation levels into the 50's when she's upset (she's been on the crabby side of things all day), so she continues to need some oxygen support because she's having a tough time breathing. Late this afternoon, the doctors finally decided that, maybe she's sick, maybe she has a virus, so they are doing viral cultures to see what shows up. This means that we were moved to a private room (which makes us both very happy) because she has to be in isolation until they are sure that she doesn't have a virus.

Irritated with Cardiologists

Lynnea has had a cough that I have been a bit concerned about since we left the hospital last Wednesday (yes, I voiced my concerns about it before we were discharged, and I was told that she was fine). Last night her cough seemed to get noticeably worse, and she was up a bunch during the night coughing. This morning she had a scheduled visit with Dr. Gruenstein at the U of M, so I brought up my concerns about her cough to him. When he checked her blood-oxygen saturations, they were low, and her blood pressure was low. He thought that there was a chance that she has influenza, so he prescribed something to treat it, and told us to go see our pediatrician. So, we managed to get an appointment this afternoon with one of the pediatricians in Elk River. While we were there, Lynnea's saturations were even lower than they were this morning. The pediatrician ordered a chest X-ray, and ran cultures for both Strep throat, and influenza. Her chest X-ray looked fine, and both cultures came back negative, but because of her low saturations, she called the U, and Dr. Gruenstein thought that she should be admitted to the hospital. This is a bit frustrating because he could have just admitted us in the first place instead of making us drive down here twice. Since we've been down here Lynnea's saturations dipped very low (into the low 50's) and she screamed for an hour and a half before finally falling asleep because she was exhausted. They put her on oxygen and are watching her overnight to see how she does. Dr. Martin is the cardiologist that was on duty when we arrived, and we're still trying to convince him that Lynnea is not well. He's not one of my favorite doctors, and this isn't the first time that I've had to argue with him about the fact that Lynnea is indeed not OK. Fortunately, he's not the one that will be around tomorrow morning, so we'll see what happens then. Oh, for now Lynnea's surgery that had been scheduled for next Tuesday is on hold. Obviously, I will post more news on that as soon as I hear what the plan is for her.

Edinborough Park

Dr. St. Louis called yesterday morning to talk about the plan for Lynnea. He feels that the problem with her pulmonary veins is significant enough to warrant more surgery. So, we've scheduled surgery for Tuesday, June 23 at 1:30pm. He is hoping to possibly fix the problem without actually doing any reconstruction of the veins (he really doesn't want to have to reconstruct them because, I guess it's really complicated and difficult to do). I'll give more details about what he's planning on doing after she has her pre-op exam the day before her surgery (I should have a better understanding of it after we talk to him about it then; right now I just have a vague idea about what he's going to do).

Yesterday evening Corey, Ashlyn, and I went to a HopeKids event at Edinborough Park in Edina. We had pizza and Ashlyn and I spent time climbing on the giant climber and going down the slides. She's a little bit young to really enjoy everything that Edinborough Park has to offer, but she was excited about getting to go, and seemed to really enjoy herself. It took a few pictures, but they're on my camera phone and we're having a difficult time transferring them to the computer, so I may or may not get them posted at some later time.

Jealousy Abounds

We made it home from the hospital yesterday. Dr. St. Louis doesn't know yet what he wants to do next for Lynnea, so he'll call us sometime next week with a plan. I never saw the final results of the CT scan; I was just told that the problem with her pulmonary vein is definitely something that needs to be addressed before she can move on and have the Glen procedure. Yesterday morning she had another swallow study done, and it turns out that she is able to swallow without aspirating. She is still unable to coordinate sucking and swallowing, so we're giving up on the idea of ever bottle feeding. The exciting news is that we've been given the go ahead to start trying solid foods with her. She won't be getting enough to really give any extra nutrition for now, but we'll work up to that.

These pictures were taken earlier in the week when we were still at the hospital. I spent some quality time reading to both of my girls. On Monday night, there was a party in the family lounge that I went to with Ashlyn. She made the awesome hat that she's wearing in the picture. She also decorated her own cupcake. It was fun.

All week we've been seeing signs of jealously from Lynnea when Ashlyn is around. This morning, I was holding Lynnea on my lap, and Ashlyn came over and also wanted to sit on my lap, so I made room for her. As soon as she sat down, Lynnea looked at her and began to scream. As soon as Ashlyn got up, Lynnea was perfectly happy once again.

Difficulites with IVs

Today before Lynnea's CT scan, they had to put in an IV in order to sedate her during the scan. This didn't go well. Usually, the people from Vascular Access do a pretty good job getting IVs in because this is something that they do all the time. They tried four times, and each time, the IV infiltrated before Lynnea made it downstairs to get her CT scan done. In the end, someone from Sedation was able to get one in to use during the scan. So, now Lynnea has bruises all over her arms, hands, and legs. Other than that, she had a good day -- full of smiles and giggles all evening.

We don't have the results of the CT scan yet; the preliminary results weren't particularly useful as far as predicting what the cardiology team will want to do next. It will probably be several days before the cardiology team makes any decisions regarding what's next for Lynnea, but from the sounds of things, we shouldn't have to stay in the hospital the entire time because Lynnea is stable, and there isn't really any reason to keep her here while they discuss her case. We are still working on getting her feedings back on track, but so far they have been going well, and if they continue to go well, we will go home.

We've Discovered Gravity

Lynnea had another uneventful day, medically speaking. The doctors are playing around with the dosages of some of her medications, but nothing particularly interesting. Lynnea spent the day hanging out in her hospital crib, which is made of metal. She made two important discoveries today. First, if you hold a toy in your hand and swing it around near the bars on the crib, it makes a really great "clanging" noise. Even better than that, if you turn most of the toys sideways (or just take your Nuk out of your mouth and hold that) near the bars of the crib and then let go, they disappear until Mommy makes them magically reappear. She doesn't know how to say "Uh-Oh" yet, but she definitely gets the idea of the "Uh-Oh" game, and finds it very entertaining.

Tomorrow she her CT scan is scheduled for 10am. They will have to sedate her for it because they need her to lay perfectly still so that they can get clear pictures. Depending on how much sedation is required, there is a chance that they will need to intubate (put her on the ventilator) for this. I hope not, but they'll do what they have to do.

Cardiologists Treating Diaper Rash

Today was, for the most part, uneventful. This morning during rounds, Dr. St. Louis explained that he's still not entirely convinced that the blockage in the pulmonary veins that was seen during the heart cath is really the serious problem that everyone is making it out to be. He still thinks that there is a possibility that there isn't really any serious blockage there; instead, he thinks that what was seen during the cath was simply a result of running a catheter close to those veins, causing them to spasm, which then looked like a blockage. He says that the diminished profusion that was seen in the left lung yesterday on the lung profusion scan could simply be the result of some blockage in the pulmonary artery, which they already knew was there, and would be pretty easy to fix during the Glen procedure. If he's right, this is good news, but of course, we won't really know until after her CT scan on Monday.

Lynnea also has some diaper rash. This is nothing new really; it's an ongoing battle to keep it at bay when we're at home, mostly because she hates bath time, so we don't give her a bath every single night, which would be the easiest solution to the problem. Dr. Kochilas and Dr. Hills (Chris) were both concerned about it. I told them that Desitin is the only thing that I've found that works on it that she's not allergic to. Did they listen to me? Of course not. They ordered some other prescription cream instead. It made Lynnea scream when we put it on her, so once it became obvious that she wasn't going to calm down, we (the nurse and I) decided to wipe it off. The nurse told the doctors what happened and they decided to get some Desitin (yes, the name brand stuff, not the hospital's similar product that doesn't seem to do much of anything) to use on her. I guess it's nice that, at least in the end, they listened to me. I just find myself wondering when diaper rash became something that we need cardiologists involved in to solve.

Out of the PICU

Lynnea had an eventful day. Around 11am she had an upper GI study done to see whether or not her Nissen had come undone. They put some contrast liquid in her tummy through her G-tube and then took some X-rays to see how things are working in her stomach and GI track. Her Nissen looks fine, it is still intact and should be functioning properly. She didn't have any reflux, and her stomach empties normally without any problems. So, her spitting up doesn't seem to be a GI problem. We are glad that she doesn't have to have another Nissen procedure done, but it's frustrating that we still don't know what was causing her to spit up.

At 1pm she had a lung profusion scan to see how blood is profusing to her lungs. This involved putting some radioactive dye into her IV and then using a large scary-looking machine to track how well blood was flowing to and from her lungs. I haven't heard any official results from this test, but the doctors did say that her left lung is definitely not profusing as well as her right lung. This supports the findings of yesterdays heart catherization that showed blockage in the pulmonary veins. We still don't know exactly what is going to be done to fix this problem (surgery, but we don't know exactly what it will entail). More information and better pictures of the problem are needed before decisions like that will be made. So, on Monday Lynnea will have a CT scan that will hopefully provide them with the information they need. Yes, this means that we are hanging out here in the hospital at least through the weekend.

This evening, because there was no reason that they could find to keep Lynnea exclusively on Pedialyte, they began giving her breast milk again. . . for now it is mixed with Pedialyte, but if she tolerates it well, we should have her back on just milk by morning.

Unexpected Results from the Heart Catherization

Lynnea had her heart catherization this morning. The procedure itself went fine without any complications. Unfortunately, the results were a bit unexpected. This catherization was done in preparation for her next open-heart surgery, the Glen procedure. It turns out that she is not a candidate for this procedure right now because of some completely unforeseen blockage in some of her pulmonary veins that carry oxygenated blood from her lungs to her heart. These veins are not something that have been previously operated on (so the blockage isn't scar tissue from surgery; the part of her pulmonary artery that has been worked on runs from her heart to her lungs) so, there is no explanation for the blockage. This problem will need to be taken care of with more surgery before considering her as a candidate for the Glen procedure is even an option. Also, they found that there is some blockage in her aortic arch. They attempted to open this area up with a balloon, but were unsuccessful, most likely because much of this area has been patched with Gortex, which doesn't stretch very well. So, this problem will also need to be addressed surgically at some point. Right now we don't know what, or when, they plan on doing next. Later this afternoon, she will be seen by the doctor that performed her Nissen (the procedure that fixed her esophagus to stop her reflux problems) will see her and try to determine what should be done about her spitting up. This might involve re-doing her Nissen, which might take precedence over her heart surgeries for now, but we'll see. For now, Lynnea is hanging out in the PICU while she recovers from her heart cath. Hopefully later she'll get to move to the general floor.

7 Months Old

Yesterday Lynnea turned 7 months old. She continued to have feeding problems over the weekend, so today we took her to see one of the pediatricians at the Elk River clinic. She does not have an ear infection or strep throat. Beyond that, we still don't know what's wrong with her, so when we go into the hospital on Thursday for her heart catherization, we will also have the surgeon that placed her G-tube take a look at her and see if he can figure out why she's not tolerating her feedings. In the mean time, we will be feeding her Pedialyte for the next few days just to give her tummy a rest.