Prayer for McKenzie

The most difficult thing for me during my sons long hospital stays was moving between the "real" world and the hospital. My wife stayed in Ronald McDonald house and I had to return home to work and try to give my oldest son a sense of normalcy. It was tough to balance as we are an hour from our hospital.

I've thought about your family all day and thinking about our experiences we had in a hospital waiting room. I feel for them. Luckily we were surrounded by the most caring and loving staff at the hospital. I hope your son and DIL are so fortunate. Loving nurses got us through some very difficult times. Angels all of them.
I hope they hear nothing but good news,
Mike
 
Unbelievable!

Prayers continue from me as well while she heals up! May she be blessed to be a strong and resistant person once this is all resolved!
 
Prayers from here for McKenzie, her mom and dad and brother and you too. Must be so hard to be patient.
 
rjs987,

Tell McKenzie's mom and dad to stay strong and take each day as it comes. Neonatal medicine has a lot of ups and downs and can be a marathon not a sprint. Each day without a setback is a good day as McKenzie's body is growing stronger each day. Tell them not to worry how long it takes, just worry about the final outcome which is McKenzie coming home healthy.

Your story brings back lots of memories. My son was on ECMO about 20 years ago, when it was still pretty new. He had lots of complications and spent his first six months in the hospital. So I know how frustrating and depressing it can be as a parent of a sick child.
 
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My thoughts and prayers are still with you, McKenzie and her parents, Bob.
May every day make her stronger and may you all find the strength and courage to get through the setbacks.

Patty
 
A brief update here.
McKenzie continues to improve slowly. She is back on the slow vent, the one that operates more like normal breathing, She is now off dialisys and the Drs are considering when to remove the throat tube for the ventilator and giving her a nose tube instead. She has been right on the line between the fast vent that provides higher pressure at a high oscillation, and the slow vent. The fast one helps reduce fluid build up and keeps her lungs more fully inflated. The slow one enables her to do more on her own but she does tend to get some extra fluid build up, but only a little now. She is still on pain meds and many other meds but those are being constantly adjusted, usually down. Every adjustment to one means an adjustment for the others to compensate and sometimes going back to what they were if she doesn't respond well. Jess got to hold her again yesterday since she was on the slow vent. Can't do that in a fast vent since the tubes are in a clamp on the bed pad. McKenzie has had her eyes open when awake and notices those in the room when they are withing sight. Jess is really wanting to be sure to be there when they get around to removing the throat tube since that will be the first time McKenzie will be able to cry or make any noises.
 
Good news! I'm glad Jess is getting to hold her some. That will help them both.
Mike
 
McKenzie knows how to draw things out. She is still up and down, but more up than down. She does a little better for a while and then she has a little set back. During the better times they are weaning her from the many meds she has needed and lowering the settings on the ventilator. When she has a little set back they have to increase one or more of the meds and usually end up upping the vent settings to help her relax and rest to improve recovery. It is a VERY long process. My son and his wife are begining to feel the pressure of the medical bills that are and will be coming from this so please continue to pray for her getting better and for them to be able to survive financially.
There is a CarePages page set up through the University of Iowa Hospitals for McKenzie. If anyone is interested it is at www.carepages.com/carepages/throughmckenzieseyes.
They are putting together a fund raiser here for them in Urbandale (Des Moines, IA area).

Koins & Kash 4 Kenzie
Saturday, September 8, 2012
4:00PM-Close
Saints Pub + Patio Beaverdale
4041 Urbandale Avenue, Des Moines, Iowa 50310

Info about this and about McKenzie can be found on the "About McKenzie" link on the side of the home page.
 
More prayers inbound for strength, continued recovery and support! The setbacks have got to be tough, but I'm heartened to hear that the wee one is fighting hard and is "more up than down!" Hang in there, everyone!

Patty
 
Well, McKenzie WAS doing better last week and they were feeding her formula as often as every 4 hrs and also was put back on the RAM air vent (like a high volume CPAP). But the last few days she developed an infection, possibly from one of the drain tubes in her chest, and there was again a milky fluid (chilothorax) in the drain tubes. They cut back on the feeding to one oz/day and antibiotics and also back with the vent tube down the throat. So not so good this weekend. Seems a little progress is always met with some setback.

The organizers of the benefit for her also posted this web link to send donations for McKenzie and her medical expenses. My son is a coffee shop manager and that is their only income currently. There are some medical benefits but not as good as most company benefits from what I can tell. If anyone is so inclined please consider this.
http://www.giveforward.com/koinskash4kenzie
Thank you.
 
Sorry Bob, someone so young shouldn't have to deal with this stuff. Still sending good thoughts and prayers.
 
I sure hate to hear of the set backs. I thought my son would never get out of the hospital but eventually he did. Two steps forward and one step back makes for a long exhausting stay for the parents too. How's Mom and Dad holding up? I still think of them often and wish the family well.

I hope the little one's health continues to improve even if it is slow.
Mike
 
McKenzie's mom is only now finally thinking of spending a few days once in a while back home (2 hrs away from the Hospital) to be with her son and husband. They both have gone to the Hospital apartment to spend a day or two at a time but it's not the same as being home. Our grandson has been spending entirely too much time with grandparents, almost more than with his parents! Don't get me wrong, we truely enjoy having him with us but it's just not good for him to be apart from his own parents so much. The stress is showing in both our son and his wife, McKenzie's dad and mom. My son has been recieving some of the bills for McKenzie's care and has not shared all of them with his wife to reduce some of that stress (I think). He still has all the normal bills to pay and is very worried about being able to stay out of major debt with the medical bills coming in now. We keep encouraging him to work out a plan with the Hospital. Hoping the fund raiser will help some.
 
This weekend we received an update and clarification on McKenzie’s condition. First what we already knew from the past week. She is fighting an infection that is most likely caused by the drain tubes in her chest. She is still needing to drain excess fluid. She started draining chylothorax again last weekend along with the infection so they reduced feeding her regular low fat formula, now only 1 oz. per day. She is puffy again due to the increase in medicine fluids needed.
This weekend we had a clarification on what the chylothorax is coming from and the impact of that (something not told us until now). Chylothorax is a leak of lymphatic fluid. Doctors have no idea at this time where the leak is or how many leaks there are. It is possible there is only one leak from the Thoracic duct, which would be better, and that it may possibly heal in time on its own, which would be really good. But it is also possible the leak is in a lymphatic vessel and/or there may be many leaks in the vessels. Many leaks would be very bad. These lymphatic vessels are very fragile so dye cannot be injected to find the leak or leaks. The vessels are like a cloth that very easily frays and unravels when punctured or cut so injecting dye is very risky. Surgical repair is also very difficult for this reason (if they knew where a leak is). Most of the vessels are the size of a hair and are like a massive tangle of hair like branches of a tree. If there is only one leak the doctors may be able to repair it. If there are many leaks they will not be able to repair them. This latter condition is fatal.
The family is very disheartened by this information and yet hopeful that it is the repairable/healable version.
 
Continued prayers for McKenzie!
God knows I know the hurt that you are feeling in all your hearts at this time!
May God place his hand upon her and heal her that she may have a long and fruitful life!
 
I want to once again thank all of you for your prayers and thoughts.

McKenzie left us last night at 11 pm and is now held in the arms of the Lord. We were at the hospital with the family and some friends from both sides to hold her. Her mom and dad were able to really hold her as they should without the encomberance of the bed pad between them and their baby girl as she passed. Her heart walls were enlarging again and though her vitals were good her body was not. She was not getting better and the doctors had run out of options to help or heal. Please continue to pray for her parents and family as we all come to terms with her absense from us. We will miss her.
 
I'm so sorry Bob! This just tears me up to read. I thought things were looking up. My condolences. Nice meeting you this past weekend. Prayers going out to your whole family.
 
Bob, I am so sorry to see this post. I too had hoped that the improvements would continue. My heard aches for you family, especially the young parents. Prayers for you and yours.:(
 
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