Out of the PICU

Lily was finally transferred out of the PICU and moved to the step-down unit! It has been a long time coming since she had her first surgery on election day (11/4/08). The last bit of IV medicine was removed this morning and all of her medications are oral. The cardiologist that was working this morning said that it is highly likely that she will need the mitral valve replaced at some future time in her life. The replacement valves that they make are much too large for infants and that they will do everything they can to manage her with medications at this point on.

She still has not been fed orally since one day in the PICU and all of her feeds are NG. That will be the next thing that they work on so that our little Peanut can finally come back home and we can return to a normal life.

Happy Thanksgiving to all.

Surgery Day Number Two

Two weeks to the day that Lily was down at the Cleveland Clinic for her pre-admission lab work, she was back in the OR for a second repair on her heart. We know that the surgeon was not really pleased with the initial repair and Lily's deteriorating condition made a second surgery a necessity. The risks of this surgery were the same as the first with the risk of mortality even higher. The surgeon explained that he would entirely reconstruct the walls of her heart with a different strategy he devised with his collegues. We were both very worried to say the least. Lily was the only surgery on the schedule for the day and many of the doctors and nurses involved with her original surgery even came in on their days off to make sure things went smoothly.

We received many updates during the day but in the end, the surgeon was very pleased with the newly constructed repair. He definitely seemed much more upbeat about it this time around than the first. Lily is back in the PICU with all the same tubes and wires that she had the first time around. They discovered an infection in her trachea caused by the respirator and put her on antibiotics. She is doing well at the moment and we are all hoping that she will continue along this path until she can have the breathing tube removed again.

Second Surgery

After our initial elation at Lily's quick progress after her AV Canal repair surgery and what appeared to be a quick recovery, her breathing became very short and labored. She was reintubated and connected back up to all of the medications that she had been weened off of. The surgeons had hoped that she was simply pulled off of the respirator too soon and that some more time to recuperate would help. Unfortunately, it is looking like her symptoms are directly related to her leaking mitral valve and she will be undergoing a second surgery early tomorrow morning to help correct this.

All of the same risks apply with this surgery and we are putting our faith in the doctors here to help fix our little girl's defective heart so that she can come home with us. This entire experience has been temendously stressful and we certainly appreciate those that are supporting us through this. Kim and I had to take some time off this weekend from this place to spend with Gwyneth.

A Setback

Lily has had a spiking temperature for days now. Her breathing has also become much more labored since she has come off one of her heart medications. Yesterday, when she was sitting in Daddy's lap, her main line in her corroded artery pulled out when she twisted her head causing a slight panic with blood all over. Luckily, she had been given a unit of blood earlier in the day and these things always look worse than they are.

Today, they decided to take her back in for a short procedure to put another line back in her arm to put her back on one of the heart medications. Unfortunately, this also meant sedation and she was put back on the ventilator. At this time, it is a waiting game to see if her breathing improves from the medication or if that and her temperature is a result of some yet to be detected infection. One other contributing factor would be her leaky heart valve and the worst case scenario would be a valve replacement surgery. That would be a last resort and they would exhaust all other options before discussing surgery.

Needless to say, this is rather stressful and shocking considering how well she had been doing up until this point.

Post Surgery Update - Day 6

Slowly, the tubes and wires are being removed from Liliana. The ventilator was removed a few days ago and she is getting a little oxygen. Only one IV connection remains in her neck and she has been eating from a bottle the past two days. Kim has also been able to hold her again. The doctors all say she is still doing great. They want to wean her a bit more from some of the remaining medications in hopes that she will be moved to the step-down unit tomorrow.

I have gone back to work as of today but Kim is still coming down to the hospital each day even though she is feeling a bit under the weather. When she gets to the step-down, feeding will be the next goal. It is hoped that she will not come home with her NG tube and so far she is feeding really well by mouth.

Recovery Day 3 Update

Lily is doing well and still in the PICU at the Cleveland Clinic. They began weening her off the ventilator overnight and they want to remove the breathing tube today. Her chest tubes were removed yesterday and a follow up chest x-ray looked good. We also found out that the echo-cardiogram given after surgery looked better than the one given immediately after the repair. We were told that the leak had lessened.

She is starting to become more alert and active as they reduce the sedation and pain medication. During rounds, it was also mentioned that they would try and remove one of the other lines today as well. Kim will probably be spending the night with Lily tonight and I will be staying here tomorrow before returning to work on Monday.

Kim and I are both very pleased with the care she is receiving here at the Cleveland Clinic. There is a very large team that do rounds in the morning and there is a nurse in the room quite often. Gwyneth also seems to be doing fine after getting the antibiotic for her UTI.

Surgery Day

Yesterday was a long day to say the least. Lily's surgery went well but was not perfect. The surgeons attempted to repair her heart 4 different ways to try and construct the chambers and valves but in the end she is left with a "moderate" valve leak. The surgeons told us that it is not uncommon for valves to be leaking after an AV canal repair and that Lily will probably require another surgery at some point later in life to repair this. The good news is that the chambers have been repaired and she seems to be doing well. Where her heart was performing at 300% with the defect, it will only be performing at 115-120% to make up for the leaky valve. Her cardiologist said we will still see a tremendous difference in her. Some of her symptoms can even be treated with medication.

Lily is still in the PICU on a ventilator with many lines connected and is heavily sedated. She will be in here for at least another few days until she can breath on here own 100%. At that time she will be transferred to step-down unit.

If that wasn't enough, Kim and I had to meet my parents at Fairview General Pediatric ER last night because Gwyneth had a high fever and was vomiting. As it turns out, she has a UTI.

I am back at the PICU this morning for rounds and they say she is doing as well as can be expected.

Surgery Day Set

Last thursday, Kim and I took Lily in for a scheduled visit to her cardiologist at the Cleveland Clinic. Her weight was at 4.945 kg with a goal of 5 kg for surgery. The doctor said he was still planning on a mid-November surgery date. We also met with one of the surgical nurses who said she would call us back with available dates for scheduling the surgery but she know that November was filling up fast. The next day we found out that the only available date was election day, November 4 so we took it.

We will be taking Lily down to the clinic for her barrage of pre-surgical tests and then she will be checked in for her open-heart surgery on Tuesday. We are both anxious to get this over with as well as nervous. Even with all the reassuring on how good they think she will do and the fact that she will be at probably the best facility in the world for heart surgery, we are both understandably nervous. Lily's surgeon will even be the current head of the department who took over for the famous Dr. Mee who helped make the Cleveland Clinic the best heart hospital in the world.

In fact, there has been a book written about the pediatric surgical unit at the clinic entitled Walk on Water: Inside an Elite Pediatric Surgical Unit.