Tuesday, April 30, 2013

Kayli is coming home tonight!!!

Kayli will likely be going home tonight!!! We are waiting until Kayli's 9pm IV antibiotic medication to be given, then she will be released to go home and sleep in her own bed! :D  
It looks like the only hold up, may be getting a nurse in the morning (at home) to administer Kayli's IV antibiotic (for her UTI).  If we are not able to get an administering nurse (for her new chest port), then I have offered to bring her into the hospital's department, where Kayli can get the IV medication delivered. So, with fingers crossed, I am somewhat confident that Kayli is coming home tonight!!! <3 

The dime. Faith in every day

I believe God is in our lives every moment of every day...if we allow Him to be. I talk to God, pray to God, and laugh with God throughout my day. There are small and large miracles around us, if we believe and have Faith in Him. I believe that if you look within the routine of your day, you too can find Him where you least expect Him to be. I want to share this short story with you, and then ask that you too, find God in your day....

(Original post date was Nov. 24th, 2011)
My Faith today: I was at the grocery store getting last minute ingredients for today's feast. I was running short on money and wasn't sure I could get the last item, a second gallon of milk, so I called my husband and asked him "can we get through the day without buying a second gallon of milk?" He told me no, they boys want me to make pudding!" I told him "do you REALLY want me to spend our last DIME on milk or should I save the money?" (we are talking our last $3 to our name, here!). He left the decision up to me. So, I got the milk, and headed to the front of the store, deciding I would go to the self checkout line so I wouldn't be embarrassed if I didn't have enough money. I would just watch the amount increase, and if I was too close I would put aside an item and leave. For some reason, I found myself in the regular checkout lane with minimal wait time (ON THANKSGIVING DAY!). I set my purchases down on the belt making sure to leave space between purchases. Then, as I waited and starred off into space, I held the money in my pocket and prayed. I prayed that God would save me from feeling embarrassed if I was short money. Then I laughed to myself as I argued with myself..."God wouldn't just make money appear in my pocket...or out of thin air" "no way, he would make it a GREAT BIG production so EVERYONE would know of his great power!...like parting a sea or something...but not in a grocery store!" I chuckled that I would have such an argument with myself, but felt comforted in the fact that I that I was laughing and not so scared anymore. I looked at the girl in front of me and she was starring at me....as if looking through me! WEIRD! She didn't say a word, didn't even smile....just looked through me and turned around. I looked down at my purchases on the conveir belt....and there WITH my items, appeared a DIME! The DIME that I asked my husband "do you really want me to spend our last DIME?" LOL God had shown me he would not leave me without... He will provide for me! It was my turn to check out. I had enough money for all the items, including the milk! AND -----> I got a dollar and change back! God is good....all the time! I laughed the whole way home, and told the story to my boys. :D We all smiled and laughed in awe of God's great power....in a grocery store! Thank You God for being in my day! ♥

Kayli met, and was Blessed by the Cardinal and Arch Bishop yesterday!


The following, is an article in the Daily Herald today.  Professional pictures of Kayli with the Arch Bishop and Cardinal, Francis George, to come.  
Some of the smallest patients at Alexian Brothers Health Center in Hoffman Estates had a special visitor Monday.
Cardinal Francis George spent the afternoon walking the halls of the new Women & Children's Hospital, sprinkling holy water on the doors of those in intensive care, blessing the doctors and nurses and personally praying with many families, including women in labor and sick children.
 The cardinal was unable to attend the March blessing of the new hospital because he was in Vatican City for the election of Pope Francis, so he made a special stop at the Hoffman Estates facility Monday to bless the families and staff members and pray with some of its newest patients.
"Let us ask for God's blessing on all those who are patients in the Alexian Brothers Women and Children's Hospital and on all the staff who will devote themselves to caring for these patients and their families," he said during the blessing.
George stopped to pray with pregnant women in between contractions and blessed the rosary beads of a father-to-be along the way. He asked one couple in Spanish if this would be a first child for their family and if they were ready for all the blessings coming their way.
Maria Mora, of Carpentersville, was at Alexian Brothers because she started going into labor prematurely with what will be her sixth child. George prayed with her and reassured her by noting that he also was born premature and he turned out OK.
"I grew up Catholic, and I've praised him, but I never thought I would meet him and not like this," said Mora, in tears after George left her bedside.
When Dylan and Mackenzie Bockstahler were born earlier this month at only 27 weeks, each weighing less than 3 pounds. On Monday when George stopped in their room, parents Shellie Ptak and Jeremy Bockstahler of Bartlett said the twins were doing better and slowly putting on weight but would probably be at the hospital until July, their expected due date.
"It's always amazing when you see how fragile they are," said George as he stopped to bless the twins.
Several new parents said they were grateful for the cardinal's words and prayers.
"It meant the world, specially with their start, they need all the prayers they can get," said Kim Jones of Elk Grove Village, whose twins, Quinn and Alexandra, also were born premature last week.
"Someone once said that love and pain are twins, but they have a hard time recognizing each other once in a while," said George, who has struggled with his own health issues in recent years. A golf cart helped him get around long hallways, but he never hesitated to walk into each room or stop for a picture with nurses and new parents.
"This is a great service to bring a women and children's hospital of this caliber to the area," he said. "Here they will be not only cared for, but they will be loved."

Sunday, April 28, 2013

Trisomy 18 in an ER, tv show episode!


Did you know that the tv show, ER, featured a story of a 6 year old boy with Trisomy 18?!! 

All cultures and testing came back negative!!!


Kayli's blood and viral cultures came back..... everything was negative! Such wonderful, yet intriguing news! Since she is doing so much better in such a short amount of time, and all tests and cultures came back negative...it is likely that she was having a life threatening allergic reaction (imo) to the new heart med! If it was her spine, then she wouldn't be doing better. I can't wait for rounds tomorrow, to have the "going home" talk! If she continues to do well at the rate she is going, she could very well be home by Tuesday!!! ♥

Friday, April 26, 2013

Cautiously Stable!

Update on Kayli: Are you ready for some good news?!! We sure are! The kidney ultrasound came back negative of any issues (good news). The blood work is coming back slightly higher wbc, but still no indication that it is from infection because she was in a lot of stress (bagging) and is now on steroids. Both cause increased wbc (good news). Her Sodium, Chloride, and Potassium levels are out of dangerously low range, and increasing well (improvement). Kayli is still on the vent, but they have been able to decrease her oxygen to 75% now, and are starting the slow wean off the vent (improvement). Kayli is breathing over the vent (good news). She is still dropping oxygen rates considerably when on her left side, but she is starting to tolerate being on her back now (improvement). We have not had to bag her since this morning (improvement). Today's chest x-ray looks the same as yesterday, which means still no sign of pneumonia (good news). Her trach sputum shows Graham Negative Rods, but she has colonized Pseudomonis (a graham neg. rod) so unless the culture continues to grow, she does not have an infection. She is still needing significant support, but with the support, she is showing great improvements! The radiologist examined her chest x-rays closer (I wanted to make sure the pain wasn't from a broken rib, due to her low bone density), and verified she does not have any broken bones! (good news). Kayli is not being quite as sensitive to movements, CPT, and/or breathing treatments tonight! :D We cannot say she is on the road to recovery, because we have yet to find the reason for her quick decline, but she is definitely doing better than she was this morning. The team is saying, she is stable because of the great amount of support she is getting now. She is on IV Zosyn, a powerful drug that seems to be helping her UTI. It's hard to believe all this is from a resistant UTI (urinary tract infection), but so far everything else is coming up negative, so we don't have any other reason for the pain, nor respiratory distress. Overall, Kayli is doing better tonight, and is now considered to be cautiously stable. :D Please continue to pray for her comfort, and for our guidance. Thank you so very much! ♥


Kayli is on the vent

Kayli is on the vent settings now.  She did not tolerate the CPAP settings.  Kayli is very tired, and resting comfortably, on the life support.  Please pray for guidance, as we do not yet know the cause of her significant respiratory distress. The viral cultures will not be back for another 2 days, but there is great suspicion that she has a virus.  Her WBC went up from 14 yesterday, to more than 20 today.  This could possibly mean that she is at the beginning stages of a nasty illness.  The vent will help support her oxygen levels/respirations, to help her get through the intense distress she is experiencing. Thank you for your thoughts and prayers!