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.