It keeps hanging around.

Fungus! Yes, that icky, yucky, moldy gross stuff that reminds me of the junk you find growing in your bathtub or shower except this is the kind that grows in your body. This is what Liliana is battling inside her little body! I wish I could wave a magic wand and make it all go away but unfortunately I am not a fairy godmother. All I can do is pray that God heals her body and she gets over this infection once and for all. Her heart function continues to look good which is a plus. They are starting to wean her down on the ventilator and they started her feeds back up last night. They also have turned off her dopamine which assists with her blood pressure and so far she is doing ok even though it hasn't been very long. The resident told us that there was discussion during morning rounds today about removing the line that they just replaced on 12/26/08 and putting in yet another new one. This is because the cultures they took still show the presence of the fungus. The problem with fungus is that is likes to hang on to and collect around lines. They take cultures every day and they will check again to see if anything shows up on the cultures from the 27th. I am guessing that they will then determine if they need to take out the line they just put in and replace it with a new one. Just keep on praying that all goes well and that the antibiotics will finally take care of this thing once and for all.

Merry Christmas Liliana! We Love You!

We had a very busy morning opening Santa presents with Liliana's big sister Gwynny. Grandma and Grandpa also came over to see Gwynny open her gifts and then we (Bill and I) made a big breakfast for all. Gwynny was especially excited to get her Disney princess dolls and her Dora house. The only thing that was missing was Liliana unfortunately, but there will be other Christmas's to come. I have to keep telling myself that. After Santa and breakfast Gwynny went to Grandma and Grandpa's house and Bill and I got ready and then came up to see Liliana. We stopped at Drug Mart on our way up and we got a phone call from Dr. Mummtaz one of the surgeons at the clinic. The first thing he said was that Liliana was stable, but that they had another blood culture come back with a fungal infection. Not good! He said they have been treating her with antibiotics that should cover it and they were going to add on some more. He said that fungal infection can be very tricky to treat and that scares him. Clinically she looks good but they need to get this thing under control before it takes control. I pray to God that this thing gets out of her body forever so she can recover. She has been looking good and resting comfortably since we have been here. We love you baby girl and we are rooting for you all the way! Merry Christmas little angel!

Santa Baby

Well, today was a busy day for Mommy. I woke up and spent the morning getting goodie trays and such ready for friends and family. I also made up a big box of goodies for the PICU docs, nurses, and anyone else that works here. They all have been so loving, caring, and just all around wonderful to our little Liliana. We really appreciate everything they have done for her. Today they were able to identify exactly what bacteria Liliana has in her bloodstream. It is called pseudomona, which after reading up on it online I found out that it is a bacteria that is mainly found in hospitals and it attacks people that are very ill and whose immune systems are suspressed. Makes sense to me since she has been in here for 7 weeks now. They will continue to treat her with the proper antibiotics and keep her fever under control. I brought in a little Santa hat and boots for Liliana today. After getting a bath which turned into a 3 nurse ordeal which I called the spa treatment we put them on her. So cute!

Two Steps Forward, Three Steps Back

Arrived at the hospital around 12:30pm with Gwynny and Billy after attending a very special children's program at Christ the King church. They had a live nativity scene with a real donkey and sheep. Gwynny's friend Jason was a shepherd and all she kept saying was, " Where's Jason? and Where's the Baby Jesus?" She was so obsessed with the real Baby Jesus that she didn't want to go up and pet the animals afterwards she just wanted to see the Baby Jesus. She eventually changed her mind when Jason came over and went with her. Anyways, when we got here today we were informed that Liliana had spiked a temp overnight and it got to the point where they had to give her paralyzation medication so they could put ice packs around her to bring down her fever without her shivering. Her blood pressure has been on the high side as well. Her liver is enlarged again and her lungs look more wet today then they did yesterday. They increased her lasiks to get some of the fluid off and are starting her on another round of antibiotics to cover if there is any infection going on. They also said that her glucose levels are bit high so they are giving her insulin to take care of that too. It is so disheartening. Just when you start to talk positive about Lily things take a turn. I feel like I am jinxing her or something. We are mentally drained over all this. My stomach is killing me too. Something has to get better here. We need some hope.

Moving Right Along...

Well, today I did not arrive at the hospital until around 2pm. Gwynny and I stayed at home and cleaned up the house and did some laundry. When I got here Bill told me that they had removed Liliana's chest tubes and she was not very happy about that. She is getting harder and harder to sedate because she has been here so long and she just blows right through the medication. The x-rays they took afterwards to check for any air, came back negative so we are happy about that. They will continue to wean her off the ventilator which I know she is just sick of. Bill was told that will happen either tomorrow or next day. It will be nice to see her cute little face again once it is removed. She has been through so much. We are trying to get ready for Christmas in between hospital visits and such, though we know we will be here at the hospital for most of it. We spent a few hours the other night wrapping up the Santa presents which is always loads of fun! I'm just glad it's done. I got Liliana a little Santa hat and boots to wear on Christmas Eve and Christmas Day! I can't wait to see how she looks! I will have to post a picture of her when she wears it. Bill and Gwynny left here about an hour ago to go find Mommy (me) a Christmas present from Gwynny. LOL. I hope they are having a good time and Daddy isn't too stressed out. I plan to leave around 5pm to do a few errands and then spend the evening with Gwynny and Daddy.

We Made It!

Liliana came back to her room today around 2:30pm from her third open-heart surgery. Everyone was amazed at how quickly things went. She left for the OR at around 7:35am. We received several updates throughout the day. The first said that they were having some trouble cutting into her because of the scar tissue from the first two surgeries. The second said that she was on by-pass and everything was fine. The third said that they were removing any excess water from surgery and then they were going to sew her back up. The last said they had finished and were returning her to her room shortly. We then waited for the surgeon to come down to the Family Room and talk to us about what he did. He sat with us in the lounge and drew us a picture of what he did using the pericardium (the tissue around the heart) to repair her leaky valve. He said that the valve had completely blown apart after the second surgery but after making the necessary repair and fixing another small hole he found around the patch he was extremely pleased with the results. In fact in his words, "I almost jumped for joy!" in the OR since he got such wonderful results. The leak now is very mild and one of the cardiologist couldn't even hear it. Thank the Lord! God has been so good to us. Now she just needs to continue to get stronger and get off the ventilator. I know she will do it! She is a fighter and her suffering is over. I believe it and I will cling to that promise.

Getting Ready for surgery #3

Today Liliana looks better than she has in a few days. She hasn't spiked a fever in over 24 hours and her fluid levels look great. Since Liliana has been here for over 6 weeks she is running out of veins for them to access. So the doctors decided to go ahead and put another central line in her carotid artery today since she will be going in for her third surgery tomorrow. I am glad that the nurse we have today did not allow them to continue to stick her a million more times and be unsuccessful. The central line in her neck is the best solution to the problem right now. On another note...there is a water main break in downtown Cleveland today which is reeking havoc on businesses, schools, and yes here at the clinic. We are not allowed to drink the water so a guy came up here awhile ago on a motorized cart bringing bottled water in for everyone. Bathrooms are usable but everyone has to use the sanitizing foam to clean their hands. It's been loads of fun. Yesterday Santa brought Liliana an "Elmo Live" as part of the donations made to the hospital by a local family. He is so cute! Can't wait till Liliana is better and able to appreciate him. I also want to thank all those who have sent such generous donations for our Lily. You don't know how very grateful we are to all of you. So many people have shown us such love and caring concern and we really thank you from the bottom of our hearts.

What else could possibly happen?

This morning Bill and I arrived at the PICU only to find out that Liliana had been spiking fevers over night and so they are postponing her surgery until Thursday. Jokingly, the nurse practitioner came in and said, "Maybe she needs some reiki?" I laughed and said, "Yeah, let's schedule that." The docs and nurses all are just amazed at how things have been going for her. They all said she is dryed out enough like they wanted and she actually looks good, but it's not a safe situation to go into the OR with a fever. So once again we will sit around and wait. That is how things usually go here. Everything in Liliana's time. ARRRGGGGGHHHH! It is so frustrating! I certainly want what is best for our little lumpkin but the waiting sometimes is torture for me as a parent because I just want my baby to be better and get back home to us. She definitely will not be home for Christmas now. Bummer! Well, I hope that things get better and she goes in on Thursday.

The Grocery Bagger: A Must Watch Video about an individual with Down Syndrome

video

Hold On a Minute!

When I arrived here at the PICU today the nurse practitioner painted a bit of a dismal picture. She told me that Liliana is not going in the direction they want her to. Her fluid output was on the positive side and her white blood cell count was up. They have done several blood cultures on Liliana and they keep coming back negative which is good but that doesn't explain the high white blood cell count. Also she is still having the bloody secretions when they suction her lungs, although when they just suctioned her the blood was not fresh and new it was older which is a good sign. Long story short...since she has an infection going on surgery may be postponed. They were not sure what Dr. Mavroudis would decide to do as of yet. So we will wait and hope that the new antibiotics they put her on will do the trickand that her infection will go away so she can have her third surgery next week. Well, one good thing is that her fluid output is now on the negative end and continuing to go further south. Hang in there baby girl! Keep on fighting and never give up! It reminds me of 2nd Timothy 4:7. I have fought the good fight, I have completed the race, I have kept the faith. She may not have completed the race yet, but we have kept the faith and believe that she will finish.

It's a Date!

Well, today I took a hiatus from the hospital and did some Christmas shopping. I felt a little guilty but I needed some time away from here. I arrived here at 4 pm only to get hassled by the police officer because he wanted to see my license and I had it tucked away in my bag. Give me a break? I guess typing my name in was too hard for him to handle. Anyways, Dr. Mavroudis's nurse Kim came in to talk to us tonight about a surgery date. She said that Monday the December 15th around 7:30-8:00 AM is when they will do her third open heart surgery. She wasn't sure which procedure Dr. M would use, but she thought he would first try using the pericardium (tissue around the heart) to repair the valve then take her off the by-pass machine and see how she responds. If the valve seems to be functioning better they would then close her up and be finished. If she does not respond well then they would put her back on the by-pass machine and completely replace the valve with an artificial one. So, that is the plan in a nutshell. Liliana is still sedated but not to the point that she is motionless. They just want to keep her comfortable with no thrashing around so she doesn't injure herself with the ventilator tube in. They have suctioned her several times today and they said that the secretions are bloody but nothing like they were yesterday. Her fever is gone today and so far all cultures from the lab have not shown any infections growing. I am trying to remain very optimistic about everything. It is the only way I can go on.

Reiki: The power of human touch

Today I received my third session of reiki massage here at the clinic. They say that the human touch has a very healing power. I don't know how true that really is but I know that the three sessions that I have had so far have been somewhat relaxing and helped divert my attention for awhile. Another long day here at the PICU. Liliana is stable but is still having problems with her oxygen and heart rate dropping at times, especially when they are open suctioning her. They just suctioned her a little while ago and she sounded really junky. They also got some very bloody secretions out. Sorry to be so graphic, but that's the truth. She also has had a temperature again today. They are taking cultures to see if there is an infection brewing. No word yet on when they will be doing another surgery. Many people are always trying to spread some good cheer around here. We received a lovely handmade quilt, pillowcase, and a Tiger book yesterday and today we received a gingerbread house donated by someone. Yummy! Who knows? Tis the season I guess. They also had a catered dinner for family of patients in the Children's hospital. Stancato's was the restaurant this month. It wasn't one of their well-known pasta dishes but it was good. The best Christmas gift we could ever receive this year is to have our Liliana back home and healthy though she probably won't be out of the hospital before Christmas, maybe New Year's. Time will tell.

A Trip to the Cath Lab

Liliana is on her way to the cath lab today. How does that make me feel? A little nervous, anxious, yet optimistic. I am hoping they do not find anything different than what they already know. I do hope that their attempts to use Viagra to lower the pressures in her heart will be successful. We just want our baby back home and healthy. She has had to fight so hard to stay alive. It just doesn't seem fair. To top things off we received a phone call from Bill's mom this morning stating that her cardiologist wants to admit her today to Fairview hospital because her EKG looked different from the last one she had done. They want her to do a non-stress test to rule out if she had a mild heart attack or not. Hopefully everything will check out ok for Grandma. What else could possibly happen? Well, here I sit just waiting for some good news today.

Day 34 at the Cleveland Clinic: Life in the PICU

Once again I sit in this tall backed chair in room M43-11 of the Cleveland Clinic PICU by my child's crib side wondering when my beautiful baby girl will be able to return home. She is still recovering from pneumonia and is on antibiotics. She is still on the ventilator and is receiving lots of sedation medicine so she will remain calm, cool, and collected. Her heartrate in the teens, her blood oxygen levels in the 90's. She hangs on another day fighting for her life. All the while we hang on to the hope that the doctors here can fix her heart problem little by little, one day at a time. I long to hold her, feed her, and care for her as I did what seems like so long ago. Our house has not been the same without her sweet little face and needy little cry echoing through the rooms. Her big sister Gwynny struggles with this change in her life sometimes acting out to seek the attention she is so desperately missing from mommy and daddy. The guilt I feel at times is heart wrenching. How can I spread myself thin enough to go around for everyone. I pray to God to give me the strength I need to go forward another day. He is faithful. I will be patient and wait holding on to his promise of a better tomorrow. Lily returns to the cath lab tomorrow morning for yet more proding and probing to somehow open a new door to the mystery behind why she is unable to tolerate her leaking mitral valve. Tomorrow can't come fast enough.

O' Christmas Tree, O' Christmas Tree

Tonight we put up our Christmas tree. It looks really nice even though it was a bit of a pain to put up. It is hard to get into the Christmas spirit this year without our little Liliana home. I can't wait till she comes home from the Cleveland Clinic and she is able to live a healthy life. It's hard when a part of your family is missing. We will keep holding onto our faith that Liliana will be home for Christmas.