Thursday, March 31, 2011

Returning to Normalcy - Back to the Floor

Another big day in Lillian's recovery! Lillian got her arterial line out today, so she finally has her hands back, a proposition that she is thrilled with. It's hard being an 8 month old who has recently figured out how to grab things and stuff them in her mouth. With the art line out, she can do that again, as you can see above. That line being out has done wonders to improve her mood, and she's pretty much back to her former self.

Lillian's arm just after having the arterial line removed.
In other news, we learned today that Lillian's new heart is CMV positive. CMV stands for Cytomegalovirus, a virus found in anywhere between 50% to 80% of the American population (less elsewhere) and is generally benign. Most people infected with it don't even know that they have it, as the symptoms of it's infection are basically a sore throat or fever). However, CMV does present significant risk to those who are immunosuppressed like Lillian is. Since Lillian was, and still is CMV negative, we are giving her an anti-viral called Ganciclovir (pronounced gan-sci-clo-veer, brand name Cytovene (indulge me for a sec as I geek out about medical technology and medicine - Ganciclovir works by preventing the viral DNA from incorporating deoxyguanosine triphosphate, otherwise known as dGTP, a major building block of DNA strands. This prevents its DNA chain from getting longer, and (I assume) replicating any further.)), an IV only medicine which will hopefully either help prevent the virus from passing to the rest of Lillian's body or will make Lillian switch to CMV positive with relatively little incidence. If she switches to CMV positive without any major issues, the virus will remain in her T-Cells for the rest of her life (as it does for all who have it) but poses little risk. However, we need to continue the treatment with Ganciclovir as well as doing regular serological evaluations (i.e., blood work to determine if she has antibodies for CMV) to help ensure that any possible passing of the CMV virus is benign.

In a desire to prevent the brains of my non medical-personnel readership from melting, lets change gears a bit. Lillian got discharged from the CICU today! It was fairly obvious that she didn't belong in the ICU when she was doing things like in the picture above - sitting up, laughing and playing like she normally does. She's shown for quite some time that she doesn't belong there, and now that we think we have her heart rhythm issues figured out, it was time to go to the floor.

Just about ready to leave the CICU (I know you can't see Lillian, blame the bed)
She does still have the pacer wires in still just in case, but we don't think we'll need to use them again. In terms of her heart's electrophysiology, we are seeing normal P waves from her donor's sinoatrial node, as well as an occasional extra tossed in by her old SA node. In English, this means we're seeing normal rhythm again, although we do see some occasional blips here and there. However, these blips don't seem to appear to interfere with her blood pressure or her oxygen saturations, so they don't appear to be an issue for now. My guess is that they will either disappear with time or she won't even notice them, although I admit to not knowing much about her long term prognosis in that area.

Since Ganciclovir is the only medicine that requires the PICC line, the line is currently heplocked (medical jargon for a inactive line kept open with the blood thinner Heparin). This means Lillian can wear pants again! Well, maybe not everything as the line is still there, but we can certainly do shorts and more pants like things. We will probably pull the PICC line before final discharge, but for now we need it for the Ganciclovir, but only once every 12 hours. 

It is good returning to the floor again.When we first returned to the hospital for the heart failure, the CICU felt like our home, but after five months on the floor, that has all the vestiges of normality right now. It also lets us do things like sit Lillian down on a mat on the floor and play with her. Of course, the CICU still feels like family as they were only ones who cared for Lillian in the first parts of her life and in the worst parts, but the floor does have a different atmosphere. I guess in the middle of a late paragraph would be a good place to bury my thanks to the CICU staff specifically, but thanks guys and gals, you're all awesome and have helped us through an extremely trying time; caring not just for Lillian but for us as well. We owe you an incredible debt of gratitude that we will probably never be able to sufficiently repay. I just hope I never see you again unless you're visiting Lillian on the floor (which we do love and you're more than welcome to do; just walk down the hallway and you'll spot us) This time on the floor is actually easier than it was than our last time on the floor as our room is even bigger now (bigger room > better view), and Lillian is on no IV pumps at all because of the line being hep-locked. The last time she was on no IV pumps was when it looked like the Milrinone wean would work (we all know how that ended...), so this is another big milestone. It makes it so much easier to do things with her, and we won't have to drag an IV pole around with us when we go on walks in the future.

Springtime at Children's... and Seattle
Again, I find a picture of spring on the walk out of the hospital appropriate here. The dark clouds are passing, the sun is shining and Lillian's new life is starting to bloom. We have returned to what is a normal routine for us, but we will soon have the chance to bring Lillian somewhere foreign and alien... home. Plus, jazz hands have returned with a vengeance now.

(aren't you all amazed at how much I can write about a single day? Just wait til there's not much to post about Lillian and I start going through her historical list of medicines (it's loooooong) and start describing how they all work)

Wednesday, March 30, 2011

Post Transplant Day 6 - Removing Lines & Goodbye Milrinone

Slow day yesterday, hence no post. A couple things in terms of Lillian sitting up, and doing alright off her pacemaker for about an hour, but relatively minor overall. Lillian had her Milrinone turned down to .3 and ended some of the initial anti-rejection medicines (to recap again, she was given 4 or so anti rejection meds after surgery to last until the long term one, Cyclosporine, was at therapeutic levels. As she approaches that level, the other drugs will be discontinued.) At the moment, I think she's down to just the Cyclosporine and the catchy mycophenolate mofetil (also known as CellCept, which will be discontinued as well very soon) Kathryn did take this video though, so you can see how Lillian is rapidly getting back to how she was before the surgery.

Today, however, was more eventful. One of the first things that happened today is that we were able to turn off Lillian's Milrinone entirely. That's a big step for her as she has been on it for 5 months. It's an even bigger step when you remember that Milrinone was the drug that has kept her alive for the past 5 months. Without that one pump, she would have made it a couple weeks. And with Milrinone off, we don't need as many lines any more (she has 3, a PICC that has been in for over 5 months, a IJ (intra-jugular; i.e., in her neck), and a PIV in her right hand). She also has an arterial line in her left hand, but that is to monitor blood pressure and we don't give meds through it. We also had a much smaller IV pump pole.
It was also finally time to remove a line. There's no need to have 3 access lines if she's not actually on any continuous drips, so we removed the IJ line (largest infection risk). Shortly after removing the IJ line, her PIV happened to fall out as well, so she is down to just the PICC line now. This will remain in for some time as she's still receiving IV medicine, just none of them continuous at this point. Lillian certainly enjoyed having her neck and hand back though.

Lillian showed a little progress with being off her pacemaker yesterday, and showed even better progress today. She had the pacemaker on and sensing, but it never needed to activate. To clarify that a bit, when the pacemaker is sensing, we have it set to a target heart rate, in Lillian's case, 80 bpm. If she were to fall below that rate, the pacemaker would kick in and start pacing her heart keeping her at that level. Lillian was able to keep her heart rate in the 100 - 110 range all day, which is the range we need it to be. Her donor sinoatrial node also continues to improve. 

We did lose some ground on feeding today, but Lillian was extremely fussy and we switched formulas on her. It doesn't help either that we still need her to keep her calorie intake up, but she simply isn't interested in eating as often as we want her to. She is still able to take her anti rejection medicines by mouth though, so
 hopefully the lack of being willing to take a bottle was an issue for today only.

On a slightly related note, thank you to my co-workers, who sent us these beautiful flowers last night. It was quite the pleasant surprise to come home and see these resting on our doorstep. I also want to thank all of you who leave comments for us on the blog and Facebook. I know I'm really bad about responding to them, but we do read them all and love getting them. Last, a couple more pictures from the last two days. 

It's not easy to see except for Kathryn and I, but Lillian is smiling behind her binky.

Monday, March 28, 2011

Post Transplant Day 4 - Waking Up

An appropriate start of Spring at Children's
Sorry about the lack of post yesterday, I was extremely tired when I got home, so I'm just doing it today. First - a recap of yesterday. Yesterday was a quiet day for Lillian. She got an ECHO which looked good for the most part. The heart failure doctor who read it, Dr. Yuk Law, was pleased with the results, although he did mention something about her ventricles that we couldn't make out at the time. Lillian also started to wake up a bit more, as you can see below. Just a quiet, sleepy day overall.

Today was another quiet day for Lillian. She was more awake and playful today than yesterday, but she's still feeling terrible (and considering the whole organ replacement thing, I don't blame her) and she is of course tired too. It's not the pain killers though. I'm not sure if I've mentioned this already, but she's already been taken off Morphine and Ativan (has been for two days now), and is having her pain managed entirely by Tylenol. She seems to be doing well with that and it's a blessing for Kathryn and I as it means we won't have to deal with a dependence on either of those two drugs, something we had to deal with for her Morphine after the Norwood. She is tired and grumpy for the most part though.

 We were hoping to take some of Lillian's lines out today, specifically the one in her neck and the one in her right hand, but that just didn't work out today. She's been off the Lidocaine for a little while now, but we're still having rhythm issues in her heart. The exact rhythm issues have changed, (although I forget from what to what), but she's still having the issues of communication between her atria and the ventricles and the ventricles tend to fire early. 

She will remain on the external pacemaker for a while still because of the rhythm issues, although we do have hope still for it to get better. It normally takes a week to come back, although we will give her at least two to recover it. On top of that, she got a 12 point ECG again today, which showed signs that the parts of the donor heart that we've been having issues with are waking up. Specifically, the main reason she's been having rhythm issues is that the donor heart's Sinoatrial node (the main pacemaker of the heart) simply hasn't been working at all, so cells in other areas of her heart generate the contraction. We need the donor's SA node to work though, and for a minute we did catch it firing properly on the ECG. The next minute it wasn't again, but it shows that it is capable of working. Lillian has her old SA node still, but since it doesn't have any electrical connection to the new heart it just fires and does nothing else.

While we're waiting for the SA node to wake up, we've been able to make progress in other areas. 5 of her 11 IV pumps are off at the moment, and only one is delivering something besides a flush. That pump is delivering Milrinone, which we've been able to wean down to .3 mcg/kg/min, down from .5 before the transplant. She won't need this into the future, but since her body has been on it for 5 months it isn't something we can just withdraw. We also started Captopril again today, you may remember this as the main heart medicine she was on after the Norwood. She'll probably need to be on this for about a year or so. In other medicine news, she is still on around 4 anti rejection medicines - Cyclosporine, Azathioprine, Sirolimus, and an Immune Globulin. This will drop to just Cyclosporine either tomorrow or the next day as her body finally reaches a therapeutic level of the drug. In fact, the only reason we use the other ones is to give her body time to build up a level of Cyclosporine that she needs.

 Lillian's also been able to start orally feeding again. This was relatively easy as she was NPO for 3 days and ravenous. On top of that, the steroids make her extremely hungry, so we're making fantastic progress there. We're already back up to our high of 60cc's orally (she was down to 5 to 20 before the transplant), and she is taking her Cyclosporine and Captopril orally, which is awesome. In terms of things which have an impact on us once we get home, this will be the biggest, so we are absolutely thrilled to see her doing so well. Feeding tubes are convenient at night, but having her eat on her own is far better.

Plan for tomorrow is to get at least another ECHO, hopefully make some progress on the rhythm issues and possibly remove some lines. Hopefully we also make progress in terms of feeling better, sitting up, and being held again. Speaking of being held again, Kathryn got to hold Lillian today even with the pacer wires in, so we're going to be taking advantage of that.

I'm going to leave you with something sombering, and then encouraging. First, the aftermath of the drainage tubes. The two middle ones with yellow wires going in are where the pacer wires are going in, the other three are the drainage tubes. She's been a fighter so far, and it shows.

Finally, to cheer you up again, the jazz hands are returning:

Lillian's Guardian Angel

I don't know if many people know this but Lillian's middle name was chosen after her great grandmother Maureen Hays (she's in the center of the picture above, holding me). I had chosen Lillian Maureen before any thing was known to be wrong with Lillian. I debated changing her middle name after we found out that there was a massive heart defect, not wanting to lose two Maureens in my life. After thinking about it for a couple months I decided that I would keep it and that grandma was a fighter herself and that the name was appropriate. As every one knows Lillian received her heart on March 24, 2011 what you might not know is that the hospital was informed and accepted her heart on March 23. When we were walking into the hospital on Saturday, it hit me all of a sudden, that that day was the five year anniversary of Lillian's great grandmother's passing. Grandma Hays was a prayer warrior. She had told me many times that she would awaken in the middle of the night and start praying for all of the grand kids. When she told me this I thought at the time "wow you worry way to much about us, we're fine". She never told me what she was praying for but I'm glad she always got up and prayed. I know Grandma Hays is watching over all of us grand kids even now and especially Lillian.

I know everyone is waiting for an update on Lillian and this will come later tonight as the doctor are fiddling with a couple things right now. I would like to do it all in one so I'm just going to wait for the results. She's doing good though, and here's a picture to tide you over.

Saturday, March 26, 2011

Post Transplant Day 2 - Making Great Progress

I've got a lot of ground to cover today, so this might get a little long (not that that's a surprise to any long time readers). First up - as I wrote yesterday, we were able to remove the LA line earlier this morning. The picture above is from yesterday, and you can see the LA line as it is the one crossing over her left hand with the two green stickers on it. This line allowed us to monitor her heart closely in the immediate post op period, but we don't really need it any more. 

Lillian's first post op ultrasound also looked really good and combined with the results of her OR ultrasound is encouraging so far. We've scheduled a new ultrasound for Sunday, so she is already at the every other day ultrasound, which normally happens at least a week after transplant.

Taking the LA line out was only the beginning though. She had to have another IV added in her right arm. The reason for adding this IV was so that we could give Lillian immune globulin, an anti rejection treatment that must be given slowly and can conflict with other medicines, so we needed to establish a new IV route for it. To recap, this means that she has a PICC line in her leg, an IV in her right hand and a arterial line in her left as well as another IV in her neck. Almost out of extremities at this point. To recap everything that's a continuous infusion, here's the pumps above in counterclockwise order: Morphine, Milrinone (she'll be on this for about another week), Lidocaine (to help regulate her heart's electrical activity), a flush, Potassium Chloride (to make up for the fact that she's NPO), Furosemide (Lasix, a diuretic), the CVL (central venous line) maintenance fluids, the aerterial flush and the CVL flush. There are two more pumps on top on either side, both of which are serving as med lines. That's a total of 11 pumps.

The next plan of action for Lillian was to remove the last two drainage tubes as they weren't draining and weren't needed any more. We did need to leave them in for a while after removing the LA line to make sure that didn't cause any bleeding, but the LA removal went fine so we went ahead and removed the drainage tubes. It's a bit hard to see the two that are left in the picture above, but there's one poking out over the purple blanket, and another one just to the left of that under the blanket (more obvious in the picture up above).

For the record, the white and red tags are for a 12 point ECG, which we're leaving on even though it's not hooked up in case we need to put it back on. The white patches above her belly button and below her incision are the spots where the drainage tubes were. You might notice that there's an NG tube coming out of her right nostril. Since she's NPO at the moment, she's building up quite the collection of stomach bile, and that is draining it out.

As with the LA line, once the drainage tubes were removed, we had to wait several hours before removing anything else to make sure that the last removals went smoothly. When we were sure that they did, it was time to extubate. First the NG tube was pulled, and then the breathing tubes in her nose. With the removal of those, we also took off the large oxygen sensors for her renal and brain function. With that, Lillian had her face back! Take a second and look at the pictures of her earlier in the post from yesterday with everything in, then with the LA line removed, then with the drainage tubes removed, and finally, with her breathing tubes and oxygen monitors gone.

Almost back to normal at this point. We still have 3 extra IVs from before the surgery as well as the pacer wires, but she made fantastic progress today already. At the same time though, she also doesn't currently have any drainage tubes as has been extubated.  So far the extubation looks to be going very well. She's had one episode where she stopped breathing, but we turned off her Morphine and Ativan, which has prevented her from having any more episodes of apnea and she's tolerated having them off extremely well. We're hopeful this continues as at this point it looks like we've avoided a morphine dependency. However, because she's had slightly lower SpO2 saturations, she's been put back on a cannula just to be safe.

On a couple of other fronts, Lillian is still having the rhythm issues in her heart, so we continue to have to manage that. She is still on the external pacemaker, and we are giving her Lidocaine to help with the electrical issues. We spoke with an electrophysiologist earlier, who was concerned with her rhythm; specifically the lack of coordination between the top and bottom portions of her heart. Lillian's heart does something very curious though. When we have the pacemaker turned up past her own heart beat, the top and bottom halves of her heart are coordinated and the top communicates with the bottom. Without the pacing though, there is no communication. Since the communication pathways are there, we would expect them to communicate with or without pacing. We still have hope that the rhythm issues will resolve themselves on their own, but if they don't there's always the chance that she'll have to have a pacemaker. Since she's had such a good recovery so far, having to take that route wouldn't surprise me.

Eyes finally open, although she's extremely drugged.

I know I post the pumps a lot... but they make for good pictures.

Friday, March 25, 2011

Heart Rate Roller Coaster

Lillian is having an issue where her heart rate jumps extremely high (in the 220 bpm range) suddenly and drops quickly. We're not panicked about it, but we do have an extensive ECG setup on her right now (as you can see above) to try and catch it. These issues are normal post op, and we would hope to see it settle down 24 to 48 hours after surgery (she is as I type this 21 hours post op).

Part of the reason for the rate issues is that her brain needs to get used to new ways of controlling her heart. Since we removed most of her old heart, she has lost electrical control of the vast majority of her heart. To illustrate a common effect of this, consider how your heart rate jumps if you get scared. In that scenario, the brain sends the electrical currents for the heart rate to increase. Lillian's brain will still send these commands, but there's nothing on the other end to answer, so nothing will happen. Her heart rate in the long run shouldn't have rapid changes and will have to ramp up and ramp down.

We hope to see these issues disappear in the next couple of days, as they are normally caused simply by the trauma the new heart has been through. Just to be safe though, we are starting a Lidocaine drip which will help decrease the "fussiness" of the new heart. Once we have her rhythm and heart rate under control, we hope to extubate her, probably later today or tomorrow. Until we do have it under control, she will continue to be NPO (no food or fluids), although we hope to restart her feeds rather then go to TPN once she is extubated.

Just a quick overview of a couple other things: Lillian has 3 lines in and 3 lines out in addition to the pacer wires. The lines out are all drainage tubes, but she has been doing phenomenally with very little bleeding. In terms of lines in, she still has the PICC line in her left femoral artery, which we are using to deliver continuous medicines, right now consisting of Milrinone (she will be on this for a while still, and we are concentrating it later) and Morphine, and occasionally Nipride (sodium nitroprusside; regulates her blood pressure) when she needs it. She also has aline in her neck which we are using as a bolus med line, and a LA line which goes to her left atrium to monitor her heart.We have a NG tube in, but it is to control air and bile in her stomach rather than for feeding. She also has an arterial line in her left hand which we are using for continuous blood pressure monitoring. Nothing is being delivered through this line, we're only using it for blood pressure.

We are looking into removing the LA line tomorrow, so we will also need to either order more blood in or make sure we have enough here, as there's always the risk of bleeding when pulling a line out of her heart.

Thursday, March 24, 2011

The Start of a New Journey – Lillian’s Transplant and New Heart

The day that felt like it would never come finally has. At 12:57 AM on Thursday, March 24th, we got a call we had been expecting for four months. On the line was Kelly, one of Children’s three transplant coordinators telling us that they had accepted a donor, the first stage in the donor process. (A donation offer can be rejected at 3 stages, the initial offering (the hospital does not inform us when they reject these), when the surgeon's arrive to retrieve the organ and again before they do the transplant.) Kathryn and I were I don’t think I’ve ever driven so fast in my life, but we made the best time to the hospital ever after dropping Annabelle off at Grandma's.

Walking into the hospital at 1 in the morning was a bit surreal as the dead quiet presented a stark contrast to the hustle and bustle that we're used to seeing at Children's. Lillian's room was like this at first, but only for a little while as the staff quickly started preparing for the transplant. Lillian's night nurse was busy with paperwork, and two other nurses were busy changing her pumps removing her formula and adding fluids, as well as drawing fresh labs to check Lillian's blood for any changes.

We were informed that Lillian would be taken back for the transplant at around 7:00 AM. While we continued to prepare, we gave Lillian her first dose of Cyclosporine, the main anti-rejection medicine she will be on. Since Lillian was wide awake and well aware that something was going it, we decided to make the best of the situation and play with her for a bit, although we were able to get her to fall back asleep and get some much needed rest before the surgery. 

While Lillian slept, it was time to clean up Lillian's room, which had functionally become our home during our time waiting. This turned into quite the ordeal, and we walked out with quite the caravan. 

The time for transplant was getting closer and closer! Because of the rejection meds we had given Lillian earlier (azathioprine in particular), Lillian had finally earned her hazardous drug sticker, something that's actually highly desired by those waiting for transplants.

Lillian was pretty much ready too, having been given an extra Chlorhexidine bath (she has been given these daily for the past four months as one of our methods of fighting off the risk of infection) and fancy surgical scrubs. 

As I mentioned earlier, there are 3 stages during the donation process where the offer can be rejection and we keep on waiting. By getting the call at 1 AM, we had already passed stage 1, but I consider stage 2 to be the most risky, as this is when the surgeon retrieving the organ actually can see it and make a much more informed decision as to if the organ would work. By the time 7 AM had rolled around we still didn't have the confirmation that we were taking the organ at stage 2, although we did know that we had an hour and a half slip in schedule to around 8:30 or 9:00 AM (aside: I should mention that these aren't official stages, but milestones that I thought worth noting as they mean the difference between a continued wait and a new heart). But even without this information it was still time to prep Lillian for surgery, so we left our room and made our way to the OR.

On our way to the OR

Once at the OR triage area, they did the pre-surgical triage and we went over the consent forms for the surgery with Dr. Michael McMullan, who would be the surgeon performing the transplant along with Dr. Gordon Cohen. If the first name sounds familiar, it's because Dr. McMullan was also the surgeon who performed Lillian's Norwood procedure. Dr. Lester Permut was the surgeon assigned to retrieve the donor heart and was not able to participate in the surgery itself for legal and ethical reasons. Understanding that it would still be a while before they began to return to the hospital with the donated organ, we signed the consent forms and they took Lillian back to prep her for the surgery. 

Asleep even going into surgery.
Since we knew Lillian would be in surgery for several hours, Kathryn left to be with Annabelle while I waited at the hospital, hoping to catch a glimpse of Lillian's heart arriving. I spent two and a half hours waiting for the expected helicopter to come, only to discover in the end that it would not be arriving via that method. Right around noon I was informed that Lillian had been on bypass for 10 minutes, indicating that the heart was either in house or very close. Sure enough, while on this call, I witnessed two ambulances arrive at the ER, and I can only assume that one contained her new heart. 

The view I spent hours in fruitless search of Lillian's new heart
Once Lillian was on bypass, the surgery proceeded quickly. We were informed at around 12:40 PM that Lillian's new heart was in her chest and they were beginning to suture the veins and arteries to it. An hour after that, they had finished the connections and had taken her off of bypass, closing her chest shortly afterwards. Within a half hour, we would be able to talk to Dr. McMullan and discover how the surgery went. 

When Dr. McMullan was able to meet us, he seemed optimistic and upbeat about the surgery. According to Dr. McMullan, Lillian received almost a perfect heart aside from two minor issues (discussed in a bit). The heart was a perfect blood type match and was reportedly beating vigorously, a very good sign. In terms of what was wrong with the heart we noticed two issues: a rhythm issue and a leaky valve issue. The first issue with Lillian's new heart is called 2nd degree heart block, in which electrical pulses in the atria are not properly sent to the ventricles. In more basic terms this means that her heart wasn't beating together as one cohesive unit. While this sounds relatively serious, it is an extremely common issue in transplants, and usually comes back. The second issue with her new heart concerned a leaky Tricupsid valve. While we are unsure of the origins of this issue, we do know that it is also a commonly seen condition in newly transplanted hearts. Our initial suspicion is that it is caused by high blood pressure in her lungs from being intubated. If it disappears once Lillian is extubated, then we will know that was the cause. Alternatively, she could genuinely have a valvar issue with her new heart, but it is an extremely minor and common issue that can be fixed easily with a small surgery if need be.

Lillian's new heart was retrieved at 8:18 AM and placed in Lillian at 12:53. It was ischemic for just over 4 1/2 hours. As the target is normally 4 hours, this is a great result, with only a minimal amount of time that Lillian's new heart was not beating.

Aside from these two issues (which again, are commonly seen after transplant and may go away independently), Lillian has a near perfect heart. It is strong, although we will need a couple more days to make sure it is properly relaxing and contracting. Dr. McMullan also informed us that due to the rhythm issue that Lillian had pacing wires placed on her heart (basically an external pacemaker) to ensure that it was working properly.

Our first view of Lillian after surgery
At 3:20 we were finally able to go back and see Lillian. Despite the multitude of lines, pumps, drainage tubes and of course a fresh chest scar, Lillian looked simply fantastic for having had an entire organ swapped only hours ago. She was much pinker than before the surgery and looked amazing. Being in the room looking at Lillian was indescribable. The feeling of relief for the wait being over was so over powering all I could do was just stand and watch her, grateful that she finally had a real chance at life.

At the same time, the whole day I had been experiencing extreme sorrow at the idea of another family losing their child, and seeing Lillian whole again was almost too much to bear in that regard. I think it will take some time to properly organize my thoughts about our donor, but I don't think I will ever be able to adequately express my gratitude for this amazing gift. Organ donation is a selfless act, snatching despair and death from those on the brink. Knowing the sorrow that the donor family feels only serves to illustrate just how feeble attempts to properly express our gratitude are. Today, we received the best gift anyone could ever give to us: a second chance at life for Lillian and re-establishment of our hope of having a complete family again. I can never properly express my thanks.

Even with this amazing gift, we still have a long road ahead of us. The last four months have been excruciating, but this next month promises to be more so, with unforeseen pitfalls and setbacks. Still it feels proper to look back and reflect on the last four months. As difficult as the wait has been, I would never trade the experience as it has given me not only more time to spend with Lillian than we ever should have had in the first place, but also an invaluable new perspective on what is truly important in life and relationships with people, specifically Children's nurses and doctors who have always been there for us when we needed them. We have gotten along great with Children's staff and would not have gotten through this experience without them and their support. Whether it is a previous nurse who frequently checks on Lillian on her way to Starbucks, a doctor who is always willing to have bizarre conversations and answer ludicrous questions or a nurse that Lillian loves so much that Lillian bursts into laughter whenever this nurse is spotted (to mention only a few); your patience, kindness and hospitality will never be forgotten. Every one of you has turned what should be a hellish experience into something that, while difficult, was ultimately personally enriching and even enjoyable at times. It has meant the world to us, and we hope you'll stick around with us as we continue to fight for Lillian's life.

Godspeed Lillian, we're only just beginning.