Take Time to Smell the Flowers

Sisters

Photos taken just this morning of Gwynny and Lily playing underneath Lily's little gym. Entire set here.

Lily's Homecoming Photos

Photos of Liliana when she was discharged from the PICU. Click on the image for the entire set.

Life At Home

It's been about a week since Lily has come home and, altough it has been challenging, it is nice to be home. Lily is still having some feeding issues and she gags on her meds sometimes and we are still battling Gwynny's MRSA. Still, it is nice to be home and not have to travel back and forth to the Clinic every day. Now, if we can just get this MRSA permenantly out of our house, we will both be a bit more at ease.

Lily Is Home

Finally, after a 105 day hospital stay that was only supposed to last 7-10 days, Lily is home and doing well. She even slept through the night. Gwyneth is another story. She continues to struggle with this MRSA infection. She has been on antibiotics for several days and is scheduled to see the doctor again on Friday. It must be painful for her since she is always complaining about her bottom. Car rides are no fun either with her screaming for most of the ride. If we can just get Gwyneth healthy, we can resume some state of normalcy in our life.

Postponed Until Monday

It seems that because Gwyneth is sick, they are postponing Lily's discharge until Monday. I took Gwynny to the doctor today because of her incessant coughing and she even got a chest x-ray. The doctor put her on an antibiotic just to be safe and her x-ray turned out to be fine. I'm sure she picked up something from being at the baby sitter the past month.

So, I guess we have one more weekend in the Clinic. I just hope that Lily doesn't pick something else up down there in the time being.

Lily Scheduled for Friday Discharge!

It's been over 3 month at the Cleveland Clinic but Lily is FINALLY scheduled to come home Friday afternoon. They have her back on her old feeding schedule and she has been off her oxygen since Monday. We thought that she'd have to come home with O2 and they even had it all set to come home but she was weened off of it that day and the day nurse didn't even realize it. Lily will come home on about a dozen meds with a crazy schedule for administering them but at least we can be in our own house.

This week has been a bit crazy. I have not gotten a great night's sleep since the weekend and Gwyneth is coughing and feverish again. Thankfully, this chapter of our life is about to be over.

Home by Valentine's Day?

When we first came in on 11/4/08 for what was to be a 7-10 day hospital stay, we were confident that we'd be home for Thanksgiving. Things didn't go as planned and we hoped that we'd at least be home before Christmas. Three surgeries later, we were hoping to be home just after the New Year. Well, it's looking hopeful that we will be home FINALLY for Valentine's Day.

They are going to try larger more infrequent feeds with Lily soon as opposed to continuous feeds. Either way, Lily is now on NG tube feeding and she should be home fairly soon.

I can't wait until I can resume my 2.5 mile commute from the office to the house after work.

View from the Parking Garage

Another weekend at the hospital. The bad news is that Gwyneth was acting up in the tight confines of the Cleveland Clinic step-down unit but the good news is that Liliana continues to look good. She pulled out her core pack at 4 am Saturday morning so they put another one in along with an NG tube to give her meds. Later on, X-ray confirmed that her new core pack was in the correct place. I took a few pictures on the way home since there was a pretty neat sunset.

Out of the ICU

Today, Lily was transferred from the ICU to the step-down unit. The next goal will be to get her off her core pack and back on an NG tube. The core pack goes directly into her small intestine whereas the NG tube goes to the stomach. There are several reasons why we don't want Lily going home with a core pack. Hopefully, this means that Liliana will be home very, very soon and this long road of surgeries will be over.

Lily is off the Vent!

The staff at the PICU finally extabated Lily for the third time last night. It is the first time she is breathing without a ventilator for quite awhile. The last time she was intubated it was because of her respiratory distress that put her back in the ICU and on the road to a third surgery. Shortly after being extabated, Lily had a temperature that later subsided. Her cardiologist and everyone said she looks good but she still has a long road ahead. She has to be transitioned to other medications than the ones she is on now and her feeds have to slowly be increased.

In other news, Lily's grandfather underwent a heart catheterization and 3 blockages were found and treated. Her grandmother had a similiar procedure just about a month ago.

Pneumonia Again

Lily has tested positive for another bacterial infection in her lungs. She had been having fevers off and on but this is the first time a culture has come back positive. Now it will be at least 7-10 days on antibiotics before she can be extabated. All things considered, they say she looks pretty good otherwise. This is becoming like the movie Groundhog Day.

I worked from home today so I could let a repairman from the water department replace our water meter. In a fog when I left, I cut the corner a bit too close and got the little Yaris rental car stuck. I started digging the car out but it wouldn't budge. Luckily someone drove by and stopped and gave me a push. I really need my car back for this weather!

Baffling

Today Liliana's stats are back to normal. Yesterday, her heart rate was high and she was very irritable all day. Last night and today she has been fine and they have been able to wean down the vent. They are aiming for extabating her tomorrow if the weaning is successful. They will also do another echo on her tomorrow. We are hoping that Liliana was just having a bad day or they just got a bad echo on her. She was moving around quite a bit and they had to repeat it yesterday. It's also possible that other things can cause the leak to seem worse than it is.

Dr. Mummtaz said that Lily's behavior of tolerating the surgery and then having problems weeks later is baffling to them. That is not something you want to hear from a doctor. He also said that her heart function continues to be good and they still want to do everything they can before they even consider putting in a replacement valve.

Will This Ever End?

We got some bad news today. Lily's last echo now shows worsening leakage in her mitral valve. It has gone from mild to moderate but it is not in the severe category where it was before her surgery. Now we have to worry about that again as well as her not tolerating her feeds and the mold that may still be in her system. The cardiologist said that he doesn't want to go just by one echo before making a decision and there are other options. Lily could go home with a tracheotomy to help her breath if necessary. The worst case scenario would be surgery number four to replace her mitral valve with an artificial one. At this point, there are more things that need to happen before any decisions can be made. They are going to start by weaning her off the ventillator and see how far that takes her.

Some good news is that her blood cultures are still negative. They also took a stool sample to see if she has c-difficil bacteria but that turned up negative as well.

Kim and I are both spent and there is no end in sight to Lily's ICU stay at this time.

Holding Liliana for the First Time In Weeks

Both Kim and I got to hold Lily for the first time in weeks this evening and she seemed much happier after that experience. We thought that we would not be able to hold her as long as she had the ventilator in but the said that was not the case. Lily is still spiking fevers but her cultures have been negative. Her belly is also distented but an x-ray showed that it is full of air. According to Lily's nurse today, morphine and some of the other drugs that she is on can hamper the digestive tract but this should all go back to normal when she is off of the drugs. They also were able to come down a bit on the ventilator today Lily is making small steps and, hopefully, we won't have any more major setbacks.

I just got some of the bill from Lily's 2 month stay and they are pretty staggering. The running total is up to $230,000 for 11/4 to 12/24/08. Thank God we have health insurance but I still cannot figure out exactly how much of that we will owe. The added bummer with Lily still being in the hospital at the beginning of the year is that we will have to pay the entire deductible again for this year.

Three Days With Clean Cultures

Well, Liliana has had three days of clean blood cultures but the doctors are concerned because of how the line in her groin looks. The infectious disease doctor said that it looks infected and Lily has had a slight temperature for a bit today. They are going to start her on some antibiotics and look into pulling the line tomorrow. Other than that it is slow going and infections are the name of the game when someone is intubated with lines for this long.

Waiting Out the Infections

Lily seems to be battling these infections well. Yesterday, they removed two of her lines that they thought could be the cause of her infections. Ever since then, her temperature has been fairly normal. She just received another unit of blood and is pretty calm. They still have made no changes to her ventilator. At this time, I doubt Liliana will be home before the New Year but, hopefully, shortly after that.

It Is Never Easy

Lily has been having spiking fevers the past two days and it was found that she has a blood infection today. She is still on antibiotics and her fever seems to be down at the moment. All of her other stats seem okay when her fever is down. Lily was given another echocardiogram today and they now classify her leak as between minimal to moderate. According to one of the surgeons, it could be because of the infection that the leak seems a little worse today since the added stress can affect her body's healing process. Even so, this is still a much more acceptable valve leak than before. Hopefully, the leak will get better as she heals. I think they will be extabating her (removing the breathing tube) as soon as she gets over this infection.

It has been absolutely frigid the past 24 hours here. It was 1 degree with a -25 wind chill!

Road to Recovery

When I arrived at the hospital this morning, they were just taking Liliana's chest tubes out and she was not a happy camper. Her sedation took a little while to kick in but she is now sleeping soundly. This repair really seems to have done the trick and we are just hoping and praying that it holds together this time.

Lily's cardiologist stopped in last night and said that not only is her heart function good but that it is actually better than normal. I seem to recall one of the surgeon's mentioning this before surgery that since her heart had to work so hard for so long, it actually became stronger than average. Both her respiratory and heart rate are the lowest I've seen during her hospitalization. The resident also stopped in this morning and said she had a really good night.

The cardiologist also mentioned that Lily is definitely a rare case. Her surgeon is head of the department and has done well over 1000 heart surgeries of which about 10% were AV canal defect. Lily is the first patient that he has had that required 3 surgeries in one visit to the hospital. We are just thankful that the third time seems to be a charm. Lily won't be home for Christmas but we are definitely looking forward to Happy New Year.

Lily's Valve Repair Surgery

Liliana's valve repair surgery went much quicker than expected. The surgeon was able to repair her mitral valve using a piece of her pericardium. He said that some of his original repair on the valve had blown out but he is very confident that this new repair will hold. He diagrammed exactly how he repaired it and said he nearly "jumped for joy" with the results. She does still have a mild leak but he said that he could barely hear it. He also repaired a tiny shunt from the previous repair.

We are really hoping that a third time is a charm for Lily and that she can recover and finally come home. After reading some other stories, however, I realize that our 6+ week hospital stay is still on the short side compared to some other families. Kim told the surgeon that this was a great Christmas gift.