Big Day Today!

Dani Jo has had a big day today. She left for surgery about 6:45 this morning. She was in surgery from about 7:00 to 1:15 this afternoon. The dr. said the surgery went really well. She had tubes put in her ears, feeding tube put in her stomach, colostomy reversed, and her appendix taken out. She is resting comfortably right now (under the influence of morphine for her pain). We are in a different room tonight and will hopefully go back to her original room sometime tomorrow. She will remain somewhat sedated for the next day or so to help her with her pain. We will start using the feeding tube in a couple of days, right now she is just getting fluids through the IV line. Normal recovery time is probably 7-10 days. Hopefully she will be going home around the middle to end of next week. Thank you all for your prayers throughout her surgery today. We thank God for watching over her and protecting her through her long day.

Dani Jo before her surgery this morning at 6:30.

Dani Jo after surgery resting comfortably. No more bags or tubes!!

Jordan with her trophy from cheerleading dinner last night.

Jamie playing at McDonald's last week.

Benefit for Dani Jo Details

This event is to raise money for expenses not covered by insurance.

Donations will be accepted anytime at the “Sandwich Shop” in Pilot Mtn. and also at the event.

Date: Saturday, May 31, 2008

Time: 5:00pm~9:00pm

Place: Sandwich Shop

(200 East Main Street, Pilot Mtn., NC)

Hot Dogs, Chips, Drinks, and Desserts

(Donations Only)

50/50 Drawing at 8:00pm

Music will be provided by the “Knight Rider” Bruce Hodges of

WBRF 98.1 FM

For more information on the Benefit call 336-374-8698.

In case of Rain, benefit will be moved to First Presbyterian Church, 1 block away from Sandwich Shop.

Saturday Night (10:00 PM)

Dani Jo has done real well the past few days. She's back on home vent and doing wonderful. She has been able to come off the vent when awake. She's appears to be back to her normal self. She will have surgery on Tuesday. The dr. will be reversing her colostomy, putting feeding tube in stomach, and putting tubes in her ears. Surgery will be about 7 hours long. Recovery time will probably be 7-10 days. Please remember her in your prayers Tuesday morning.

God bless,
The Hearls

Sunday 11:00pm

Hi everyone--I know that I have already posted today, but sometimes when you have things on your heart, it is good to write them down. I couldn't think of a better place to write them than on Dani Jo's blog since so many read her story.

I've had 2 people just today ask me how do I deal with everything and with Dani Jo? I told them as I have told many, only by God and His Grace do I make it from day to day...usually I get a puzzled look and they go on to say, "I don't think I could ever do it"... I was thinking of all the ways that I deal with everything that has happened and every thing that may happen in the future. First of all, I live day to day. God's promises are so true and real to me.

I usually start my days with prayer...I pray for strength...Isaiah 40:31 But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint. Through it all, I guess I've learned to be patient. This scripture tells us to "wait"...WOW what a concept in such a crazy fast paced world. I have learned to stop or slow down and hold on to what is important in life...I pray for strength at the end of the day, because I usually have grown weary by then. It is hard to think of yourself and taking care of yourself in the midst of your storm. I have to remember my body is just borrowed, It is God's Temple as a result, what goes, shines outward. ..."they shall mount up with wings as eagles"... I feel that this means that God always has us under His wing no matter what situation we are going through, and He gives us the strength to stand tall and be a testimony for Him...

Another promise God has given us is "Psalms 37:39-40 But the salvation of the righteous is of the Lord; he is their strength in the time of trouble. And the Lord shall help them and deliver them: he shall deliver them from the wicked, and save them, because they trust in Him. I have learned to trust the Lord and realize that He is in control of all our situations and turmoil. When I get down on myself, I have to remember what Jesus went through on the cross--the stripes he bore, the nails in his hands and feet, the spear in his side, etc...I realize very quickly that I have my daughter and I cherish each and every moment and I never have to worry about any thing of that travesty happening to Dani Jo. I have learned not sweat the small stuff...God will deliver us...His promise is true. It may not be the way we think he should deliver us...the flesh wants sickness healed, blind eyes opened, lame to walk, deaf to hear, but God is the almighty!!! He decides the outcomes of the situation and even though I don't understand everything and why Dani Jo might be going through this, God knows all and he will never forsake us! Isaiah 41:10 Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. I have no fear, for I know that God is beside me all the way. I am not saying that I haven't been afraid of situations that has happened, I have just learned to trust that God will "help" me.

I want to end my post with this scripture: Philippians 4:13 I can do all things through Christ which strengtheneth me. I have learned that this scripture is true without strength from my Saviour I wouldn't be able to stand and face the trials of each day.

I called one of my "prayer warriors" for scripture on Friday and couldn't have sent better scripture. In the scriptures she chose to send to me, they were also of God's promises to the righteous. So many times we wait answers from the Lord, "right NOW". As we all know God doesn't work like that. He will answer prayers as He sees fit. A lot of times, it isn't the answer we expected....but as my "prayer warrior" sent to me..."Be still and know that I am God"...

If after reading this you still don't understand how we get through...I encourage you to evaluate your life and pray for understanding. God has given me a peace in knowing that He is always there holding my hand...even on days I feel he's so far away...I just close my eyes in prayer and He is always there...

With Love,
Amanda

Our little God Sent Angel!

Well, this is day 17 this trip in the hospital. She has been smiling right much the past couple of days. So I believe she is at least starting to feel a little better. The plan is to schedule another swallow study this week to see if she is still aspirating into her lungs. She has been fed by the feeding tube that you see in the pictures for the good part of her stay this time. If she is still aspirating into her lungs after the second swallow study, they will plan to do surgery to put a "G" tube, (permanent feeding tube) in. While she is under, they are also planning to put tubes in her ears, do her colostomy reversal and shave some tissue from her trach in addition to the "G" tube.

Your prayers are greatly needed for our family at this time. We have now been separated for the 3rd time in 6months since she was born. We have our good days and "not" so good days. We are still leaning on God for all answers and unanswered prayers. Most of the time, the unanswered prayers are the biggest blessings!

Sometimes we go through life and never stop and think about our blessings that God has given us. As you can see in Dani Jo's pictures above...she is happy. Every time she smiles I feel like she is thanking God for another "breath" of life. Even as she lies with tube in her nose, in her belly, and even though as much as she loved eating from a bottle and baby food, this has changed in her life, but she is not brought down by this. She continues to be happy and that is a blessing in itself.

A lot of us take for granted, myself included, the little things in life. My eyes have been opened since the beginning of her birth, things that I took for granted before, I don't take for granted so much now ....breath....As I watch her sleeping knowing that she is giving no effort of her own and completely dependent on her ventilator with no "man's" cure (except for healing from God), I begin to thank God for each breath. So often, I would see people on Oxygen for whatever reason and I would, how pitiful...and go about my business. Now as I watch my own baby depend on a machine to do her breathing for her, I look at it a little different.

This scripture has a whole new meaning now...Let every thing that hath breath praise the LORD. Praise ye the LORD. (Psalms 150:6).

The separation of our family over the past few months have been also hard. Absence makes the heart grow fonder...couldn't mean more to me now. I love my husband very much, but I have grown so close to him over the past couple of weeks a love that I can't explain. I don't think he realizes just how much I truly treasure him and thank God everyday that I have such a wonderful husband, daddy, partner, and friend! He has always been very involved with Jordan, Jamie, and Dani Jo. And I know if we weren't such a great team Dani Jo would not have done as well as she has so far. We all miss each other when we are apart and hope that we can be together again really soon.

We want to send a thank you to those who have donated in monetary to our family. In these times of her hospitalization, it can get rather expensive. And the money has helped our family while I have been out of work. Back and forth to the hospital each day, sometimes twice a day, meals at the hospital, and just everyday living can get quite costly. It is appreciated with our whole hearts and hope that you all will be able if not already, meet Dani Jo soon! She is very precious to our family. Jordan especially misses her a lot.

Dr. Karlson just walked into her room and informed me that he was going to check to see when the swallow study was going to take place and also speak with Dani Jo's surgeon that if her swallow study meant that she needed a "G" tube, was Dani Jo strong enough for the surgery. We should know something in a couple of days.

DOLLARS FOR DANI JO
I know that a lot of you have been asking about benefits for Dani Jo. Dickie Crump from Pilot Mtn. is going to host a "DOLLARS FOR DANI JO" benefit on Saturday, May 31st from 5-9pm. He will be serving all you can eat hot dogs, drinks, desserts, etc...at no charge. We are only accepting donations for the food. There will also be music. We are going to try our best to have Dani Jo at the benefit so all can meet her. It will be held at the Squeeze Box right on main street. I hope to see all there.

Please continue to keep us in your prayers--we love each of you and thank you all for your compassion on our family.

In Christ,
Joey, Amanda, Jordan, Jamie, Dani Jo

Thursday Night (10:00 PM)

Dani Jo has done pretty good today. She was able to come off the vent tonight for about 8 minutes before starting to desat. This is the longest she has made it since back in the hospital. The drs. told me tonight that they are planning to try Dani Jo on her home vent again tomorrow. Please pray that she will do well this time.

Thank you all for your prayers and support. God bless each one of you.
The Hearls

Monday Night (9:30 PM)

Dani Jo had a good day today. Still on hospital vent. They are going to try her on a different model of home vent sometime in the next couple of days. The drs. said today that she would have to go 7 days without any problems on her home vent before they discharge her. So she's looking at another 2 weeks at the earliest before being discharged.

Pray that this new ventilator will work out for her.
The Hearls

Sunday Morning (9:30 AM)

Dani Jo is sleeping right now. They just stuck her foot to get a blood gas, so she got pretty fired up about that. She is back on the hospital vent. Her CO2 levels steadily increased from the time she went on home vent on Friday night to lunch time yesterday. They put her back on hospital vent at 2:00 and have decided to leave her on it until Monday so that she can have some stability and rest a little. Drs. are trying to determine why she is not responding well with the home vent right now. They are tinkering with the settings, but haven't found the right mix yet for her. She was able to go vent-free for about 3-4 minutes yesterday. This is the longest she has made it during the past week, so maybe that's a good sign. That's about all that's going on right now.

Say a prayer that our family will be back together soon.

Two New Pics

Friday (10:00 PM)

I'm at hospital right now. Dani Jo is sleeping. I'm watching/reading the Yankees/Red Sox game on the Internet--not exactly the baseball package on DirecTV, but it will do for tonight.

Dani Jo has done well today. They put her back on the home vent about 6:00 tonight. She has done well so far. They took a blood gas at 7:30 to check her CO2 levels. They were good (41). No surgery today or next week.

Here's the upcoming plan. If Dani Jo transitions well back to her home vent, hopefully she can get home beginning of next week. We have to get some new equipment (pump and other things for the feeding tube). They are sending her home with the feeding tube in the nose. She will come back in two weeks to do another swallow study to see if she is still aspirating as bad as she was last week. She was pretty sick when she did the last swallow study, so they think she might do better on this one. We will schedule a surgery date after this test in two weeks. If she is still aspirating pretty bad, they will do the colostomy reversal and feeding tube (G tube) in belly in same surgery. If the aspirating is better, they will only do the colostomy reversal.

She is still not doing well off the vent when awake. She desats very quickly. Still no real ideas as to why she is doing this. It may take a while for her to get back to normal with this. They experimented with a "trach collar" today. A trach collar is a hose that pretty much hangs loosely around her neck over her trach. The trach collar is hooked up to a constant flow of air (with or w/o oxygen). This constant flow around her trach will help keep her from desatting so much. We tried the trach collar a few times today. She did ok with it. She didn't like the way it felt though--she fought with it a lot.

Well gonna go for now. The Yanks just won 4-1. Yeah!! Most exciting game I've ever read on the Internet.

I want to say thank you to that special person that blessed Amanda and I today. Thank you.

God bless,
Joey

Wednesday Night (11:00 PM)

Just got home from hospital. Amanda is staying with her tonight. (My wife is a wonderful person, she has stayed by Dani Jo's side every step of the way.)

They put Dani Jo back on the hospital vent (again) today. Her CO2 levels were very high this morning. They have come down a lot since going on the new vent. She's still not able to sustain her breathing and O2 levels when awake and off the vent. They tried to take her off today, but had to be put back on within 20 seconds. Still feeding with the feeding tube. They are going to try and schedule her colostomy reversal surgery for this Friday. They want to do it while she is still in the hospital. They will also be putting tubes in her ears during the surgery. We will get a definite answer on the surgery sometime tomorrow. Looking at another 7-10 days in the hospital with surgery, recovery, getting back on home vent, etc.

Thank you so much for everything. We love you.
Joey, Amanda, Jordan, Jamie, and Dani Jo

Monday Night (10:00 PM)

I'm hanging out at hospital with Dani Jo. I made Amanda go home and get some rest tonight. Dani Jo has been alert more today and has stayed awake longer. Still no luck when taking her off the ventilator. Her O2 sats drop pretty quickly when we do that and she has to go back on. CO2 numbers are still looking good while on the vent.

Bad news today with the swallow study. She is aspirating a lot when she eats. They have temporarily inserted a feeding tube down her nose into her belly. She will be able to eat solid foods by mouth but will have to drink fluids through the feeding tube. The Drs. will be determining whether or not they think she will need to have a feeding tube surgically inserted through the outside of her stomach. We may not know this for a couple of weeks. We may go home with the tube in her nose and see if she makes any progress with her aspirating before they decide on the surgical one. Our friends brought Jordan and Jamie down to the hospital for a few minutes tonight. First time all five of us have been together since Thursday night. It was nice to be a family again, if only for an hour.

Still looking at a few more days in the hospital I think. Please keep praying for her. She is definitely a fighter.

God bless,
Joey

Update (Saturday Night)

Rough morning, good evening. They determined that the cause of Dani Jo's sluggish, lethargic behavior was due to her carbon dioxide levels (etCO2) being elevated tremendously. Normal etCO2 levels are 35-55. This morning her levels were ranging from 115-130. Elevated CO2 levels essentially sedate the body. They cause the body to pretty much shut down respiratory functions. Her rate was increased on her vent, as well as her oxygen levels, but the CO2 wasn't coming down. About 10:30 this morning, she began having shaking spells. She had three episodes. The drs. feared she might be having some form of a seizure. They did an EEG to check her brain for seizure activity. They also changed her over the the hospital ventilator fearing there might be something wrong with her vent. They took Dani Jo down to get a CT scan on her brain. While coming back from the CT scan, Dani Jo appeared to wake up and start to recover. When she got back to the room, she was hooked back up to the CO2 monitor and her levels were in the 70's. After a couple of hours, her levels were back in the normal range (40s & 50s). The drs. don't really know what caused her levels to get so elevated this morning. Possibly the infection she had, possibly the medicine she had been taking. The preliminary results from the tests indicate that she did not have any seizures.

I know many of you have been praying for her today. Thank you so much. Most of all, we want to thank God for touching our little girl today and taking care of her.

In Christ,
The Hearls

Hanging Out at the Hospital

I guess Dani Jo began missing her friends at Brenner's. We had to bring her to the hospital this afternoon. She has an infection in her trach (another one). She was very sluggish and wasn't eating anything much over the past two days. She slept all evening long at the hospital and has just decided to wake up and want some attention at 12:18 AM. I'm really wanting to go to sleep, but she has different ideas. They are also going to look into why she might be aspirating some. (Food going down into her lungs when she eats instead of her belly.) I hope we will get out of here at some point tomorrow, but just don't know right now.

I'll try to let you know more tomorrow. Keep her in your prayers.
Joey