Monday, May 31, 2010

Our Charity Choices

Here are a few of the charities we love and have touched our hearts through our journey with Daniel. In lieu of flowers, charitable donations in Daniel's name would be greatly appreciated.

Half the Sky Foundation
Donations can be made online. They actually have "The Heart Project", which could save a child with congenital heart defects:)

People in Crisis United
1611 N.W. 12th Avenue, Room 5009
Miami, FL 33136-1096
Phone: 786-252-3466 email:
Checks payable to: People in Crisis United
One of the nurses at Holtz started this foundation recently to help children in crisis.

Ronald McDonald House of South Florida
Donations can be made online.
They are a lifesaver for many families during tough times, and they really helped us too.

Memorial Mass Details for Daniel

Dear Friends,

A Mass of the Angels for Children will take place for Daniel on Wednesday, June 2nd at 10:00am at St. Vincent Ferrer, 840 George Bush Blvd., Delray Beach. A reception will immediately follow at the Church's Family Life Center from 11:00 - 1:00pm.

In lieu of flowers, we would like to request donations in Daniel's name, and I will post a few close-to-our heart charities once I have a chance to gather their details this afternoon.

We are profoundly grateful for the outpouring of love and support during this time. You have no idea how comforted we are by your blessed communications.

Sunday, May 30, 2010

Our Little Angel in Heaven

Our dear Daniel went to heaven in the middle of the night. He put up such a good fight, but his little body just couldn't take it anymore. The Good Lord needed another angel.

We are sad, but we are so thankful. We are so thankful for every minute we had with Daniel and wouldn't give one minute of it back. He was (is) such a beautiful little soul and our lives are richer for having had him in it.

God DID have a plan when he sent us halfway across the world to bring Daniel home. It just wasn't the plan we expected. We are so thankful that he experienced the love of our family and friends. We are so thankful that he was baptized at St. Vincent Ferrer. Though his time with us was short, he touched us deeply and managed to touch many, many people along the way.
We can't thank everyone enough for the prayers, the love, the support. We prayed him right home to Jesus. Daniel is in the best of hands now.

Saturday, May 29, 2010

Madi Therapy

As of yesterday, we started calling Madi on speakerphone to talk to Daniel. Even though he can't respond, you should see him wiggle, blink and even try to smile when he hears her voice. It's simply magical. We've believe that this IS an imperative part of his healing process and helps Madi too, so we have decided to make a daily routine out of it. Priceless....

Aunt Kathy is here, and we will spend the day visiting with Daniel. He is totally responding to her and squeezing her hand like crazy. He knows love when he feels it:) Tonight we will stay in Miami together at the nearby Marriott so we will have a chance to visit and decompress.

Thank you, LORD, for another blessed day.

Saturday morning

The Holy Spirit sent us a spontaneous message to drive home to Delray yesterday at around 4:00pm. Daniel had a stable day, and we really wanted to see Madi. We feel like she's beginning to need us more and more though she's doing so fine with Bubba and Grandpa keeping her busy.

We had a pizza party, and I slept with Madi in her bed. We tried to do a sleepover in our room, but she loves her bed so much that she decided we should move. It was great to see her and cuddle with her again. We drove back to Miami this morning. We knew it must have been a quiet night, because our phones did not ring, but I still find myself holding my breath when we come back. Those are good moments for burying my thoughts in prayer to relax my anxiety.

Today, Daniel's temperature is actually low and they are warming him. I think he is happy that we are back. He is still moving quite a bit and looking around. He is still on dialysis. We are waiting for the doctors to make their mid-morning rounds so we can find out what's happening in detail, but his nurse says that he had a quiet night.

Aunt Kathy is flying in this morning! It will be so comforting to see her. There is nothing better than being surrounded by family, friends, and the love of God:)

Friday, May 28, 2010


Praise the Lord for those sweet words coming out of our night nurse's mouth! Daniel had a "beautiful night". The plasma exchange seems to be working. He is outputting a lot of urine since the treatment, and hopefully, the quality of the urine will be improved. Onward to lung function. The secretions in his chest are lessening. The next goal will be to get him off the oscillating ventilator. They had increased his support in the last few days with the big changes like closing his chest. Now that he's more stable, they will begin slowly weaning him again to make sure his lungs can handle it. We are also told that time is needed for Daniel's blood pressures to stabilize. We have all the time in the world to wait for our precious boy's body to heal:-)

Thursday, May 27, 2010

Back in Miami

First I must say we had a great time seeing Madi today. She performed so well. The look on her face was of pure shock when she saw us in the audience. She was totally surprised. It seemed as if she was looking for Daniel's face in the crowd too. Once the reality hit that we were actually there, she couldn't stop smiling! We went to lunch together and spent some time playing chess (Bubba's been teaching her) before it was time to head back. She was sad when we left, but apparently that went away once we turned the corner! We received Madi's first report card--straight A's!!! She's such a great student:-) We will miss Mrs. Bivens and feel so fortunate to have had her as Madi's first teacher.

As I write, Daniel's blood is being washed through a dialysis-like process called plasma exchange. This is supposed to help his kidneys start working effectively again by cleansing some of the junk out of his blood. This process will take a couple of hours. He's had a high fever all day, but I've watched it drop point-by-point since we returned at 4:00. The plasma exchange should help with the fever too. It seems they are determined not to leave anything on the table when it comes to treating Daniel:)

An active night

Our little bugger gave 'em a run last night. In checking Daniel's diaper, the nurse found some odd sediment and discharge. It could be just "junk" from his poorly performing kidneys, but they are looking into it further. They have stopped his feeds for now, since he hasn't produced stool. His bowels could be "sleepy" from the paralysis meds he's been on periodically. He has a fever right now, which they are working on bringing down. Not surprising with everything his body went through yesterday.

Our highlights for the night were the fact that Daniel's heart is holding strong, and they were able to clear a good amount of secretion from his lungs! He is still producing a good amount of urine, though the quality of the urine isn't where it needs to be yet. We keep hearing that things should progress now that his chest is closed. We are praying that is true.

Today, we are going to surprise Madi and show up for her end of year school performance and take her to lunch. We are so excited to see her smiling face. Friends Lisa and Sherril will be here today to sit with Daniel, so we can relax and enjoy our time with Madi. Lisa and Sherril are both bringing lots of books to read to Daniel:)

Wednesday, May 26, 2010

High Tea with Bubba

Bubba and Grandpa have been a Godsend down here. Bubba's been keeping Madi so busy that she is still saying, "Daniel is going to have heart surgery." It is so comforting to know that she's in such good hands, and she's so happy, that we don't need to worry about her for one minute.
One of Madi's recent wishes was to go to a tea house and have a real tea party. Last week (or maybe it was the week before), Bubba granted Madi's wish and took her for high tea.

On the way to the tea house, Madi declared that she was going to use her best manners--and that she did! When she arrived, the staff members took her back and adorned her with a hat, boa, purse and wand. She sipped tea with her pinky up and then sat back letting out a big sigh. She looked at the centerpiece on the table and commented, "Bubba, isn't it just beautiful?" After observing their fancy surroundings and taking it all in, she said in an annoyed tone, "Bubba, didn't you think the tea house would be more quiet?!"

His chest is closed

It feels so strange not to have to "suit up" in a gown, gloves and mask! Daniel's chest has successfully been closed. I must admit that I became so used to suiting up, my inner germ-phobia makes me want to continue!

My friend Carmen and I scurried off to 11:45 mass while Jimmy waited with Bubba and Grandpa for the surgery to finish. We came back to a happy report that all went well.

They will monitor him closely, especially in the area of blood pressures. In a few days, hopefully his lungs will have cleared enough for him to be switched from the oscillating ventilator (short bursts of air) to a traditional ventilator (longer bursts of air). Right now, we pray for healing of all organs so his body can move towards the next steps. Thank you for standing by our man:)


Hi All--they are closing Daniel's chest as I write. Please, please pray for success. This is a big move that should help him progress.

Holding our breath and praying...

Thank God for quiet nights!

We are always happy to report another one:) They have been able to come down on his heart meds a bit, so Daniel is getting closer to chest closure. They want to strategize about the best way to get some more fluid off him first though. He produced 500 ml of urine in the past 24 hours, which was up from the day before:) He is starting to look less puffy too.

We feel good today. We feel positive. Thank God that Jimmy has been so strong through this while Mommy has had more than a few weak moments this week. I think I'm back on track now! It has really been helping to go to daily Mass at the Chapel here. The Lord's house has a way of comforting us and keeping us centered:)

Tuesday, May 25, 2010

A Hopeful Development

Last Thursday, my dear friend Carrie Socha called me to say that her Grandmother called her that morning. Her Grandmother had this very strong feeling about Daniel. The message to us was, "Tell them to check the medication." Of course, our friend felt obligated to relay this information and of course I felt obligated to mention this to Daniel's doctors.

On Saturday, the doctors began looking at making some changes and trying to find a reason why Daniel's platelet counts were so low despite the fact that they were giving him platelets. They began suspecting that Daniel might have a sensitivity to Heparin, which was used throughout his time on the ECMO machine and was also used for his kidney dialysis. Yesterday, the results came back that Daniel was "positive" for a reaction with Heparin. While Heparin usually acts as a blood thinner, in Daniel's system his antibodies began fighting the Heparin and it began clotting. He developed something called 'HIT'. (Andrew, look it up for me please:) We are hoping that this discovery will only lead to quicker healing. He still has some battles to overcome, but one can hope!

Thank you God for sending your Holy Spirit to us and to people in our lives in this time of need.

Making Headway

Another quiet night for Daniel. They were able to come down on his epinephrine a small amount. He lost more fluid, so his swelling continues to improve albeit slowly. His chest X-ray showed some congestion, so they are going to break his ventilator circuit more often to suction out his chest. There are likely old clots and secretions that need to be cleared out. They have decided to wait another day on switching the ventilator. Chest closure may take place by week's end.

We forgot to wish everyone Happy Pentecost on Sunday! We welcome the Pentecost season, which is all about the Holy Spirit and New Life!

Monday, May 24, 2010

Side Steps Today

Today is about side steps. Daniel's swelling is going down, and he has put out a little urine today, thank God. The doctors have decided not to close his chest until they work on a couple of things. Daniel's diastolic pressure is up, and they need to find out why. They can't control this with medication without jeopardizing his kidneys, which they are not willing to do right now. They are also concerned about his platelet levels being low. They are going to do an echocardiogram today to take a closer look at his heart function and will aim for closing him tomorrow IF everything checks out okay.

Thank you for helping us stay strong. We pray that God will continue working miracles in Daniel's little body.

Monday morning

No news is good news! Daniel is beginning to look more like Daniel. His swelling seems to be going down a bit. We are waiting for the doctors to do their rounds so we know the plan of action for the day. The night nurse said he was waking up more last night. Once I know more about the day, I promise I'll post again!!

Sunday, May 23, 2010

A note about the babies here

We noticed from the beginning how many babies are here in ICU with no one visiting them. Through this absolute angel we met in the room next to Daniel's, we found out that some of these babies have been basically abandoned in ICU. This very special woman, named Monica, has adopted babies twice from this hospital floor. She lost a baby girl two years ago to a failed organ transplant and then decided to adopt a very special little boy named Logan from the floor. Logan will be five next month. When Monica and her husband adopted him at two years of age, five of his organs had been transplanted. He is now deaf from medications and they just found out he has cancer, so they've begun chemotherapy. His parents are here everyday, selflessly giving their love to Logan and always with a smile on their faces.

Since we have the attention of so many dedicated prayer warriors, we ask that you please say some prayers for Logan, for his parents, and for all of the babies and children that are 'on their own' here.

Daniel is opening his eyes:)

Upon return to the hospital yesterday, we received the amazing news from our family that Daniel was blinking while we were gone! He was also pretty active moving around. He didn't move much for us at that time, and you could tell he was pretty deep in sleep. When we came back from dinner to say goodnight to Daniel, he totally responded to our voices! He opened his eyes and was squeezing our fingers pretty tight. Needless to say, we had a good night's sleep!

This morning brings much of the same. He is opening his eyes and moving. In fact, last night they had to give him more sedation because he was 'too awake'! They stopped the main dialysis machine because the peritenial dialysis seems to be picking up speed and adequately removing fluid. They have decreased the flow on his oscillating ventilator, which means his lungs are doing more of the work. They have a goal of Monday or Tuesday to close his chest. They want to make sure the swelling is down so nothing compromises his blood pressure.

Now is that time that Daniel needs more comforting than ever. We will be spending more time in his room just holding his hand if nothing else.

The power of prayer is awesome.

Saturday, May 22, 2010

Another stable night

We are so thankful for 'uneventful'! Daniel had a quiet night. He seems to save the action for early morning. Both mornings so far, he's had blood pressure issues, which they've managed to correct with medications. He didn't produce any urine last night, so they may put him back on dialysis. A few of his labs were a little off too.

He is still squeezing away this morning and moving his lips. They will not put him back on the paralytic now unless they absolutely need to. They will work with him through sedation.

We know there are still hills to climb, but we feel so strongly that he's turned a corner. We also feel strongly that we've turned a corner--in our faith. This experience has truly transformed us. I hope someday we can share some of the grace-filled moments we've been blessed with through this experience, so many amazing people. Unexplainable events that could only be driven by the Holy Spirit.

Bubba, Grandpa and Uncle Andrew are coming today to sit with Daniel while we drive back to Delray with Madi and spend the day with her. We are so looking forward to seeing her. It feels like it's been a month.

Friday, May 21, 2010

Daniel went Pee Pee!

I never thought I'd be so happy to announce this!!! Daniel produced about 10 cc's of urine!!! He's still squeezing away too and even starting to move his arms a little. I think this might be the best Friday we've ever had!!!

Praise, praise, praise the Lord:)

Daniel is SQUEEZING!

What unexplainable JOY we just experienced! Jimmy went in to see Daniel, and he squeezed Jimmy's finger!!! He called me in, and Daniel squeezed my finger too!! What an overwhelming moment--obviously very emotional in an awesome way. They are going to let him come off a little more, and then, they have to put Sleeping Beauty back to sleep for a while!

Rejoice, rejoice. Thank you God.

Switching gears prayer warriors!

The doctors feel like Daniel's body is getting stable enough to begin assessing his neurological condition. Though they began administering the paralytic again last night, Daniel's surgeon pulled him off it completely this morning. It will still take time to filter through his body but they want to have him wake up to some degree.

The poor little guy is puffed up like a marshmallow because they are giving so much blood product in order to keep his blood pressure steady and other fluids. He still isn't excreting urine, which isn't helping. We really need him to start peeing!

The labs are looking good, thank God. His lactic acid is down. White counts are still a bit messed up because of his bone marrow being "revved up". His blood gases are normal.

Day by day...

Praising the Lord for a quiet night

We had a feeling last night would be uneventful in a good way. Last night was an important night for Daniel to rest and us too!

He was stable throughout the night! His night nurse also reported that he responded to the flashlight when she checked his eyes and he moved one of his feet, which indicates that the paralytic was finally processing out of his system. For his safety, they began to administer the drug again. This morning he is having some blood pressure swings, but that is normal during this time, so they will tweak medications. We haven't been able to find out about his lab results yet but we should know more this morning, so I will post again.

Thanks be to God!

Thursday, May 20, 2010

Yay, Yay, Yay Daniel James Murphy!

Daniel's totally on his own now with chest tubes removed and holding strong! His lung function is still supported by a ventilator, and they are pacing his heart until his body proves to be stable. We are told to expect a very bumpy 36 hours to come with blood pressure issues and other issues that they will continue to stay on top of.

Today brought many family visitors including my brother, Andrew, who flew in from NH today to be here for Daniel:) Our Aunt Diane and Uncle Rick showed up too (upon special request). Best friend Sherril Debonis has been here all day as Daniel's cheerleader and ours too, along with other very dear friends. We fielded many loving phone calls and emails of inspiration and prayers.

May God bless all of you for the love and support you've given to Daniel and to our family to date. I'll never be able to name all of the special people who have so lovingly prayed for Daniel. So many of you we don't even know. We are so blessed. Daniel has obviously touched many lives.

Go, Daniel, Go!!

Daniel went off the ECMO machine at 3:45. He's holding strong.

Psalm 27:14
Wait for the LORD; be strong and take heart and wait for the LORD.

Romans 12:12

"Be Joyful in hope, patient in affliction, faithful in prayer."

Today we try again. We are still facing the same setbacks with Daniel's kidneys and liver and his white cell counts. God willing, he will stand strong on his own today. He is such a tough little guy.

Wednesday, May 19, 2010

Trying again tomorrow...

Daniel held his own off the ECMO machine, but given his low white counts and raise of lactic acid in his blood, they decided to return him to ECMO after about an hour. They will work on figuring out why these issues are occurring. They will try again tomorrow with removing him from the machine. His lungs are at the bottom of the priority list now. His kidneys are still being looked at, so they will return to dialysis. We stand strong for Daniel. We know you are praying hard.

Oh, and I should mention that thanks to a dear friend, Daniel has a beautiful statue of the Blessed Mother in his room looking down on him. We know this will bring him comfort.


We just found out that though they are removing him from ECMO, it is out of necessity because other organs appear to be at risk right now. They are very concerned about his white count being up. We need prayers that he can do this without ECMO and that his body will handle things better.

They are taking him off now. We pray he hangs tough.

Prayers for a strong heart and lungs please!

We just got wind that they feel Daniel's heart and lungs are doing well enough to try to remove him from the ECMO machine today! They will keep him connected in the event his body isn't ready, but all signs are saying it is. Please, please pray for this little guy's body to stand strong.

Goals for the day

First of all, so many inspirational emails and posts this morning. Thank you for keeping us focused and for sharing your love. We feel it.

Daniel hasn't moved yet, but they are not alarmed given his sick kidneys. It may take a day or so for his body to clear the medication.

Today's issues are a high white count cell and high lactic acid levels. They are sending cultures out to check for infection and they are doing some 'balancing' to adjust the acid levels.

I will post again once we meet with Dr. Rosenkranz this morning. I want to post some of the good news this morning!

Tuesday, May 18, 2010

Praying for Movement

At noon today, the doctors decided to give Daniel a "Roc Holiday". They removed him from his paralytic drug, Rocuronium. They do this to find out how long it takes the body to react. Once Daniel's body shows signs of movement, which can even be twitching, they will begin administering the drug once again. It is for his own safety right now, with the ECMO machine and the fact that his chest is still open. So this evening we pray for movement.

With humble thanks

If we haven't said it before, we'll say it again. We are so grateful for all of you prayer warriors out there. We can feel the love, and it is beyond words to know how much people care. It seems you are coming out of the woodwork. Some of you we've never met and may never meet, but faith keeps us bonded together. Thank you so much for your emails and blog posts. Thank you for your inspiration. It keeps us going. It keeps us strong.

Weathering the Storm

Phillippians 4:6
Be anxious for nothing, but in everything, by prayer and supplication, with Thanksgiving let your requests be known to God.

Our Aunt Karen called with this Bible verse yesterday just at the time I was crawling out of my skin. Yesterday was a rollercoaster. We were across the street at dinner when my cell phone rang. It was the hospital saying that they needed permission to insert a larger catheter for Daniel's dialysis. Just hearing the Doctor's voice on the other end sent my stomach into knots. We rushed back to the hospital. Thank the good Lord, the catheter was inserted just fine with out any bleeding at all. We decided to stick around for a while since there seemed to be a lot of commotion around Daniel's room trying to stabilize the dialysis process. Apparently, the first three hours can be really rocky, especially with Daniel on the ECMO machine too.

At around 9:00, Dr. Rosenkranz calmly, but gravely, stated that Daniel's chest was bleeding and was going to have to go in. Our hearts sank. Here we go again. It was a very long couple of hours that Jimmy and I watched and waited and prayed. At anxious moments, we decided to pace the hallway and pray. At 11:00, we received the news that brought joyous tears and more thanks to God. The bleeding had stopped, the dialysis was working, Daniel was stable. We were able to rest last night knowing that everyone in there would watch him like a hawk.

This morning the sky is bright blue. We walked into smiling faces and a stable little boy. His BUN and creatinine levels are drastically decreased. His heart is pacing better. The plan today is to continue dialysis, and they will possibly even wean him from ECMO some more.

God is so good.

Monday, May 17, 2010


As I write, the doctors are ramping up for some surgical procedures on Daniel. After negotiations between the Nephrology team and the Surgical team, they have decided to utilize the ECMO machine for his kidney dialysis, since the lines are already set up. They have also decided to insert a catheter into his abdomen for the purpose of draining fluid and to use in the event of another dialysis option. They are also going to change some lines to his heart.

Hang in there, buddy. Hang in there.

Plan "B"

"In God We Trust"

Happy moments, praise God. Difficult moments, seek God.
Quiet moments, worship God. Painful moments, trust God.
Every moment, thank God.

So, we've gone to plan B, since Daniel's gone into renal failure this morning. After rounds, Dr. Rosenkranz and the team have decided it is in Daniel's best interest to stay on ECMO while they deal with his kidneys. We are not looking at this as a 'setback' but rather as a 'set-aside'. They had warned us of this possibility, and leave it to Daniel (Murphy's Law) to give us a run for our money again! Little Bugger:)

In God we trust...

(Thanks Teri O. for the quote I found on your SVF email:)

Today is a big day

Our focus of concern has switched to Daniel's kidneys this morning. We were prepared for this because they saw it coming. His BUN levels have elevated and urine output has significantly decreased. Daniel's doctors had planned to insert a catheter today in the probable event that dialysis will take place.

On a good (but anxious) note, they are going to try to remove Daniel from the ECMO machine today. We are prepared that this might not be successful right away, but of course we are praying for the best here. We are told his lung X-ray has improved again.

Sunday, May 16, 2010

New Slideshow

Time in the hospital has allowed me to finally add the slideshow of pictures from China to bring home our precious little boy (right column).

I came across this picture of Jimmy with Ronald McDonald in China. When I took the picture, we never dreamed that he'd invite us to move in with him!!

A Blessed Sunday

Sunday feels so important today. A day of rest, a day of prayer, a day of our Lord. We can only imagine the prayers going out to Daniel today. So many of you have added him to prayer lists, dedicated masses in his name and have simply prayed for him which is the most we could ever ask for. Thank you so much.

We haven't seen his X-ray yet this morning but hear that his lungs are improving. We will ask to see it this morning. Our issue of the moment seems to be his kidneys. There are certain levels of things that are elevating and he is on 'watch' by the doctors. We pray that these levels balance out before they become a problem. It's a watch and wait scenario. Other than that, Daniel is stable. They are actually planning on weaning him more from the ECMO machine today. He is proving to be so strong. We can hardly wait for the day we carry his sweet little booty out of here.

Happy Sunday. Praise the Lord!

Saturday, May 15, 2010

Ending on a good note

We breathe a sigh of relief tonight as Daniel's progress continues to move in the right direction. Bubba and Grandpa came to sit with Daniel today while we drove home to spend time with Madi and get a few things done. I think they need to come down more often! The profusionists continued to wean him off the ECMO machine and his body is responding well. Today's X-ray looked good, and we hope that every day will bring more room for air flow. They started giving him a small amount of formula through a nose tube so his body doesn't 'forget' how to process food. He is looking more like Daniel every day too:)

I need to throw a mention to The Ronald McDonald House. We are staying here on the hospital campus for a mere $15 per night. This place is a blessing and I don't know how we'd do without it. It's a dormitory style place and provides for a nice, clean place to rest in a truly endearing environment. If you travel by a McDonald's in the future, you can rest assured that your change in that box is going to a very worthy cause for many families all over the world.

A Beautiful prayer from cousin Murphy

Lord, look upon him with eyes of mercy. May your healing hand rest upon him. May your lifegiving powers flow into every cell of his body, and into the depths of his soul, cleansing, purifying, restoring him to wholeness and strength for service in your kingdom. Amen.

Staying Positive

This morning's lung X-ray is improved:) It is not drastic and it will still be a slow process, BUT the X-ray DEFINITELY looked better! We are praying that the weekend brings lots of healing for Daniel's body, so they can begin to wean him from the ECMO machine some more. Apparently, it is not good for the body to remain on the machine for too long. Kidney and liver function are being monitored carefully and are hanging in there right now. So once again, we can smile that Daniel's progress is moving in the right direction. We can't thank you enough for your words of kindness and inspiration that keep us going everyday.

Friday, May 14, 2010

A Message from Madi

Dear Daniel,

I love you, Daniel. I love you a little more than mommy and daddy. I love you more than the whole world, Daniel, because I know you are my little brother and you are going to have heart surgery. When you get better you can jump off the slide with daddy helping you like me.

Daniel, yay, yay, yay. Daniel James Murphy.

When you come home I will let you into my room. You can go wherever you want to because you are my baby brother. I love you, Daniel.

End it right now.

I love you mommy and daddy so much. I'm using my kissing hand. I hope you are using your kissing hand too. Mommy, hug Daniel for me. I hope you kiss Daniel's bear for me, okay? I wish I could be with Daniel. I made a card for Daniel but I cannot find it. I will make another one, okay?

Mommy can you send a note for us too please?


Daniel's Team

A few friends have asked about Daniel's care and if someone is looking after him on a regular basis. As I write, Daniel has 2 dedicated nurses today and six doctors are camped outside of his room right now discussing today's action plans. He has a specialist, called a profusionist, dedicated to monitoring his blood and oxygen flow. He has a respiratory specialist who comes by regularly to check his lung function. A neurologist just walked in to see Daniel, but right now it is too difficult to tell if his brain function has been compromised since he is still fully sedated.

We did meet with his surgeon this morning. He confirmed that the fluid is lessening in Daniel's lungs and they believe the bleeding has stopped. This means that the cloudiness on the X-ray, which appears to be blood, will take time to break down and see improvement. There are some hiccups with liver and kidney function but nothing unexpected for someone going through the trauma of cardiac arrest.

Dr. Rosenkranz reminded us of the ups and downs here. Please continue to pray for his recovery.

Moving in the right direction

Tears of joy this morning as we walked into ICU. Daniel fared well through the night.

He is outputting more urine. They were able to lessen some of his medications. They weaned him a bit more from the ECMO machine and his heart is holding strong with the rest it's being given. We are told that the X-ray of his lungs is still pretty cloudy, BUT it does look slightly better than yesterday. He is still paralyzed and on full sedation for his safety, but we are told he can feel our touch, so today we will try to spend more time in the room with him since he is more stable. We also brought his musical seahorse to be with him last night, and his nurse was kind enough to put it on for him throughout the night. We figured that would soothe him, since he was used to it from home. The medical staff looks to be breathing a little easier today when they visit Daniel. Again, we know this will be a long haul, but sweet Jesus it is a relief to receive good news. Once we meet with his surgeon today, I will try to post again with today's obstacles and plan of action.

Your prayers are working. We are forever indebted.

Thursday, May 13, 2010

Baby Steps

Today left us with some positive developments. We are cautioned that this will be a long road and there will be some steps backwards, but that there is hope and we need to be very, very patient.

Daniel's heartbeat and oxygen levels were stable today. They are beginning to wean him from the ECMO machine at a very slow pace, but so far so good. The drainage from his nose and mouth seem to be lessening a bit, and the doctors saw an improvement. He also had less fluid coming from his lungs, so they are hopeful that what they are doing is working. We will find out tomorrow morning in the form of an X-ray. They also found a nebulizer treatment that can be used with out removing his ventilator, which we make the process much easier and more effective. They also put him on TPN, which is basically nutrition in a bag through an IV.

We saw more smiling faces in the ICU today, and ours were included. We were also joined by my Mom and Dad, along with Jimmy's Dad. Oh the joy of having parents to be there for you. We are now thankful for the most slightest of improvements. Our little guy is hanging in there. Please do us a favor and hug your little ones a little tighter tonight (and always).

Thanks again for the humbling outpouring of love and prayers. We are so grateful.

Update on Daniel

Once again we are so humbled by your prayers and all of the prayer warriors out there for Daniel. It sounds like the whole world must be praying for him.

The morning brings us the following updates. On the good side, his organs seem to be stable. Though he is assisted by the ECMO machine, his heart beats are still stable. The obstacle today is Daniel's lungs. One of the necessary elements of the ECMO machine is heparin, which is a blood thinner. Unfortunately, heparin can cause bleeding. Daniel's lungs, for some reason, are filling with fluid from this and the various medications he is on to reduce his swelling and output urine. Today is about trying to find out why his lungs are filling up and to try to make room for air so Daniel can breathe properly.

We are being strong and we refuse to give up hope. We can clearly see that none of our friends and family are giving up either! He is such a strong little boy. We truly believe that God sent us halfway around the world for a reason to bring him home. We believe that reason is to be with us.

Please keep praying...

Wednesday, May 12, 2010

Update on our sweet little fighter

I don't have to tell you how concerned we are right now. It is so hard to be away from his bedside, but the doctors really believe it's in our best interest to get some rest, for our sake--for his sake. We know you are all with us, and we have received so many beautiful emails and blog posts. Thank you so much. They keep us going, and remind us that we must keep the faith, even during this most difficult of times. They have also required us to have lots of Kleenex on hand.

When we left the hospital this evening, Daniel was stable. His heart is working, and the ECMO machine is doing the heavy lifting to give his heart a rest. The good news we have to hang onto: his body is producing urine, which it wasn't producing much last night. Though his heart is beating slowly, it is indeed beating. His oxygen level is stable. He is a fighter. The anesthesiologists, who have come to love Daniel dearly, gave us reassurance that he was even fighting under sedation and he moved all of his limbs, which is good.

The next steps: they will continue to allow his heart to get stronger, while he remains on the ECMO machine. They will work on building up his lung capacity again, and we can only take things day by day. The surgeon was "cautiously optimistic".

We can't thank you enough for your love and support. Please continue spreading the word to all of your prayer chains. We are so blessed to have so many people who care about Daniel.

We will update in the morning.


Last night wasn't a good night for little Daniel. His O2 levels dropped somewhat precipitously during the night and this morning, they had to go back in to figure out what happened. He is currently on an ECMO machine to "give his little heart a rest." The point is to stabilize him now.

As you can imagine Lisa and Jimmy are very worried and have asked for all of your prayers.

Tuesday, May 11, 2010

Bye Bye Blue Baby

We never noticed just how blue Daniel's little fingernails and toenails were...until now. Now his little nail beds are the most beautiful shade of pink! We swear his skin tone is noticeably different too. It's amazing.

Our little bao bao is truly a fighter. They were able to remove his breathing tube at around 6:00 this evening. It is painfully obvious that he detests restraints, so the plethora of tubes coming out of everywhere are driving him crazy already! He goes wild just about every hour on the nose, and we are being told that the next 12 - 18 hours will be the roughest. It will be a delicate balancing act of managing his pain and making sure he's breathing properly with his new plumbing.

Jimmy and I decided that we should both stay in the ICU room for now. That way one of us can rest and the other can be next to Daniel during the night. We both feel that someone should be next to him at all times right now.

Thank you all so much for your prayers. They mean the world to us, and they are obviously working! Will update tomorrow...


Lisa just called to say that the surgery is over, it was a complete success, and in some important ways it was easier than they originally thought. As I write this, Lisa and Jimmy are in with Daniel.

Inside the 20...

The next update:

All is going well. Another couple hours. The nurse looked very pleased and sounded great about the progress.

At the 50 yard line...

According to my "sources" inside the hospital, Daniel is halfway through the procedure and everything is going fine. More as we know it.

Thursday, May 6, 2010

Dressing up Daniel

We've reached a new "fun" level here for Madi. She has discovered that she can get Daniel to wear her dresses, and he loves them. Of course, her fancy ones are off limits, but he'll take anything she'll give him. The neighbors are going to think we're nuts when they catch a glimpse of him sporting his (her) denim jumper! To us, it's not worth denying their fun. He clearly likes to mimic her, and if it brings them closer together, we say GO FOR IT!!!

Madi's new baby doll

Madi discovered that Daniel would make a fabulous new baby doll to play with. They managed to get him into her baby doll stroller, and he loves it! There have been a couple of wipeouts taking a corner or two, but they really enjoy playing this game together.

Wednesday, May 5, 2010

Countdown to surgery

As I write this post, I am looking at Daniel sound asleep in his stroller. I took him for a walk this morning and he promptly fell asleep. His nights have been so restless--filled with whimpers and cries. I know we can count on, at least once in the night, him crying out and tearing out of his bedroom. By the time I can get to him, he's already in the hallway. I do not think he's awake, but it does seem that he's looking for us and he's clearly comforted once he finds us. Last night, for the first time, he had run into Madi's room crying. I think he loves her companionship so much. If he had his wish, I know he'd sleep with her every night. He seems to be comfortable in his room and goes to sleep without much issue now, but the nights have been rough for him. Sorry for rambling, but I know that his nights are affecting his days and he's very tired. I am so relieved when he has a good nap.

It's hard to believe that this time next week, Daniel's heart surgery will have taken place and we will be on the road to his recovery. It seems like we've been talking about it for so long now. We are prepared that the next few weeks, months maybe, will not be easy for him or for us, but there's really no alternative here. We would appreciate your prayers for a successful surgery and for a speedy and full recovery.

First Trip to the Beach

Last Saturday, we decided to take our first trip to the beach as a family. We opted for a late afternoon outing, complete with dinner for the kids and wine for Mommy & Daddy. Daniel was mesmerized by the big, blue ocean. He clearly felt more comfortable watching Madi splash in the waves from afar, and he really didn't leave Daddy's chair much. He wasn't crazy about the sand but did enjoy chasing some birds. Mommy was frantic because the water was so wild. There were rip currents and jellyfish all over. Within minutes, Madi was yards down the shore and I couldn't help myself from letting out a paranoid scream from time to time, even though I know she was in capable, safe hands with Daddy.

When we were leaving, I noticed a sign and said to Jimmy, "See--Saturday--rip currents and jellyfish". Madi adamantly responded, "We better not come on Saturdays anymore, Fridays will be a much better day!" Sorry fans, Mommy forgot to bring the camera along:(


Several weeks ago, thanks to the kindness of friends, Daniel was treated to his first trip to Build-A-Bear accompanied by his big sister. He was a bit overwhelmed with all of it. We ended up choosing a bear for him once it was clear that he wasn't sure how all of this worked. He loved the "stuffing station", and was really into stomping the foot pedal to stuff his bear. Madi had a ball showing him around to the various stations and attempting to engage him in the total experience. We made sure his bear was complete with a heartbeat, and Madi recorded the sweetest, "I love you Daniel", which he loves to listen to. His bear, which we decided to name 'Lucky', will go with us to the hospital next week, so Daniel can hear his sister's loving words over and over.