Postponing Surgery

After much prayerful consideration, Corey and I decided let Lynnea stay at home with us and grow some more before having surgery, rather than having it tomorrow. We don't know when her surgery will be, but during her pre-op exam last Thursday, Dr. St. Louis was hoping that she would be healthy enough to wait at least another month.

Decisions, Decisions. . .

We took Lynnea to the U of M for her pre-op exam this morning. She, of course, hated this, and wonders why we torture her like this all too often. We spoke to Dr. St. Louis about how Lynnea is doing, and the surgical plan. He is incredibly pleased with how well she is doing at the moment...so much so that he's not really sure that now is the best time to operate on her, but he is leaving the final decision up to us. He would kind of like us to wait -- waiting would give her the chance to grow a little bit more, it would give us all a little bit more of that much needed time at home as a family, and there is a very small chance that waiting could eliminate the need for him to reconstruct her pulmonary vein. The echocardiogram that she had done on July 13th showed some improvement in the pulmonary vein compared to the echo that she had done right after her last surgery. Dr. St. Louis does not have any explanation for this improvement -- he says that the last surgery that he did (the aortapexy) may have helped a little bit, though he still isn't really convinced that it's the cause for this improvement, or perhaps it is improving on its own simply because she is growing, and as she grows the spot that is narrow is growing too so that it's not so narrow anymore. Unfortunately, since he doesn't know what caused the slight improvement that was seen, it's impossible for him to predict whether, or not, the improvement will continue, or whether it will ever improve enough so that it doesn't need to be reconstructed. If we would go ahead and have her surgery on Wednesday, he would do both a bi-directional Glenn and pulmonary vein reconstruction. The problem with doing the vein reconstruction is that, once you start messing with a vein, you're always going to have to keep working on that vein because scar tissue and other issues continually arise. So, doing this now would pretty much guarantee more surgeries in the future on the pulmonary vein. But, the advantages to going ahead with the surgery now rather than waiting are that she's healthy, and her heart function looks pretty good, neither or which are guaranteed if we wait. We are supposed to think about what we want to do over the weekend and call him on Monday to let him know what we've decided.

Sisters

Ashlyn and Lynnea have enjoyed this time at home together. They have both decided that it's good to have a sister. Lynnea loves watching Ashlyn play with all of her toys. Ashlyn enjoys holding Lynnea's hand, reading to her, and sharing toys with her. They will both miss playing together when Lynnea goes back to the hospital for her next surgery.

The Next Surgery Date

Lynnea is scheduled to have her next heart surgery on Wednesday, July 29, at 7am. As always, the date and time is subject to change several times between now and then, but for now, this is when it's supposed to happen. We will try to keep her healthy until then, which should reduce the chance of needing to re-schedule.

Another Doctor Visit

Today Lynnea had another cardiology appointment at the U of M. She was a good girl during her echocardiogram (which she usually claims is absolute torture...today she was incredibly tolerant through most of it), and she still seems to think that Dr. Gruenstein is a really scary guy. Her echo remains unchanged, which is good news. We still don't have a surgery date for her next surgery, but Dr. Gruenstein said that he would remind Dr. St. Louis' office that it needs to be scheduled. We were very happy that there was no reason to admit her back into the hospital today (anytime that we are able to come home again after a clinic visit makes it a very good day).

Yesterday and today Megan took more pictures of my girls. Here are some of them -- they are still completely unedited, but very cute.

Life at Home

As always, it's good to be home, though being home isn't exactly easy. Lynnea has decided that if I am more than two feet away from her, then I am too far away, which is worth crying loudly about. Yes, I know that this behavior is pretty age appropriate, but unlike most babies, when she cries, she turns very blue, and her saturation levels drop frighteningly low, so I try not to walk away from her too often. Yep, she's one very spoiled baby. Ashlyn also needs my attention sometimes, which is only fair. Trying to balance between the two is challenging. For example, yesterday Ashlyn urgently announced that she needed to poop. So, I told her to go into the bathroom and began to follow her in to help her out. Well, Lynnea began to spit up, which she's been doing pretty much with every feeding again, so I had to go help her because she was choking. By the time I was done helping Lynnea, I heard Ashlyn yelling, "Mommy, clean up poop. Me need toilet paper." When I finally made it into the bathroom, there was a lovely piece of poop on the floor (still haven't figured out how it managed to miss the toilet) and the entire roll of toilet paper was unrolled on Ashlyn's lap. Yes, it's good to be at home.

Going Home...Again

I decided this morning that I will take Lynnea home. The discharge paperwork is being worked on, and we should be heading out sometime later today. I'm still not completely happy with Lynnea's condition, but again, if it's not going to get better until surgery, I'd rather not sit at the hospital for a few more weeks while we wait.

Maybe Tomorrow

OK, so I've decided that, if the doctors all still think Lynnea really will be fine at home, then I'm willing to give it a try. Mostly, I'm just really tired of being at the hospital, and, especially if the low saturation levels are simply an inevitable fact of life right now because of Lynnea's unique physiology, I would rather sit at home for the next three weeks than sit at the hospital. Dr. St. Louis is not really willing to operate on Lynnea again for at least three weeks, so, for now, there's nothing we can do to fix Lynnea's low saturation levels. Whenever we do end up actually going home, we will have oxygen at home available for us to use if her sat's drop and don't come back up on their own within a reasonable amount of time.

Still Uncertain about Going Home

Lynnea continues to have lower saturation levels than I am really comfortable with. Today when her saturations dropped, we put her on a very small amount of oxygen to help her recover. The first time her sat's dropped today, this method worked, but this evening, the oxygen didn't seem to make much difference. We will talk to the doctors again in the morning about whether this is OK, and we will discuss whether we will be staying here for a while longer, or whether home is something we can look forward to in the near future.

Staying in the Hospital

This morning Dr. St. Louis said that he is comfortable with us going home whenever we want, even though Lynnea's sat's continue to dip pretty low. He believes that her sat's are simply going to be lower because she is beginning to outgrow the B-T shunt that was placed between her aorta and her pulmonary artery. The only solution for this would be to go ahead and do the Glenn procedure, but he's not willing to do that right now because he's afraid that she's still getting over the tail end of the cold bug that she came with this hospital stay. I told him that, even though I trust his judgement, I'm not really comfortable going home with her dropping her sat's like this, at least, not without some sort of very clear guidelines in place for when we should be really worried about her, and when it's OK for her to have such low sat's. He felt that this was reasonable, and he and the other cardiologists are working on getting a plan together. We'll hang out here for a few more days while they get things lined up for us (we'll probably be going home with oxygen. . . just as a precaution, Dr. St. Louis is adamant about not wanting her on oxygen all the time).

Talk of Home

Lynnea had her CT scan today. She needed to be sedated for it so that they could get clear pictures. She was sedated the last time she had a CT scan too, and she didn't have any problems. Unfortunately, today that was not the case. She decided that, initially while she was sedated, she didn't really want to breathe on her own. . . her sat's dropped to ridiculously low levels, and I'm pretty sure her heart rate also dipped frighteningly low, though I don't know for sure because the doctor and nurse stopped sharing her numbers out loud once she got to the point where they had to bag her. Fortunately, the sedative that was used was a short lasting drug, so within a few minutes she was fine again. The rest of the afternoon she was full of smiles, and during afternoon rounds, there was talk of probably going home tomorrow (Friday). Unfortunately the rest of her evening didn't go very well; her sat's dropped into the 50's, flirted with the 40's for awhile, and hung out in the low 60's most of the time. The doctors decided to not put her back on oxygen for now, and there's still a chance that they would be willing to send us home tomorrow, but the final decision will probably be left up to me, and I'm not entirely sure that I'm really comfortable taking her home if she's still dropping her sat's like that. So, we'll see; we might just hang out here over the weekend.

Wednesday

Most of the day, Lynnea was happy and full of smiles, though she still seems to need some Tylenol for pain. They tried to take her off from her oxygen today. . . it didn't go very well. Her saturation levels dropped into the 50's (and flirted with the 40's) and didn't show signs of coming back up on their own, so the oxygen was turned back on. The doctors don't have any great explanation for why she still seems to need the oxygen, which is frustrating for them, and for us. There is still a chance that her low saturations are due to her retaining fluid (she is extremely sensitive to fluid retention), so it might just take a couple extra doses of some diuretics to even things out again. There was some talk of possibly going home on Friday, but, of course, that will only happen if Lynnea is no longer needing oxygen support, so we're not getting our hopes up too high yet. They also started her back on her bolus feeds today -- two hours on, one hour off. She seems to be tolerating that just fine so far. Tomorrow, after her CT Scan (she can't eat anything for six hours before the scan because they will be sedating her for it) we will try increasing the rate a little on the bolus feeds and run them over an hour and a half instead of two hours.