Tuesday, September 30, 2008

Prayer Request Update - Baby Pictures!!

Mr and Mrs Yechout have been going with me to church this week so I will have help with Dillon since we have service every night, so we all went early tonight so we could run to the hospital and see Jared and Johanna and the new Little man. I feel so much better to have seen him with my own eyes, he is very very little but is doing so well. He is only on 32% oxygen (room air is 21%). And is on CPAP - just like Dillon started using...only much smaller! He is moving his hands alittle. He is so cute and so tiny but looks like he is strong. They fed him his first meal via th NG tube (tube up his nose down to his stomach - which is standard for preemies as they don't want the baby to burn calories by trying to eat on their own). His first meal was 1 cc or (1 ml)!! That is like a drop! It is so tiny! Jared and Joh seem to be doing great too. Please continue to pray for them as they will have a long long time ahead of them.









video

Monday, September 29, 2008

URGENT PRAYER REQUEST

I have an urgent prayer request I would beg you to take before God as many times as you remember. One of our closest friends, Jared and Johanna just had their second boy tonight. Their first boy is one month older than Jay and their new little one was born 10 weeks early at only 2 pounds 14 ounces!! Please keep them in your prayers, they will have a long NICU stay ahead of them. His aunt sent an email that said he came out screaming so that is a good sign, but I don't know any other info. 
My heart is breaking for them right now and I would ask you to remember them, not only tonight but make them a part of your prayer list for the next 10 weeks (or so) while they are in the hospital.

Thank you! And I know they would appreciate your prayers for their new LIL man (who has not been named yet!)

Sunday, September 28, 2008

Updates

Sorry its been a while, here is a quick update

  • Dillon has been doing great! NO seizures since the tubes went in his ears on Tuesday Sept 16, so 13 days with no seizures!!! Praise God!!! His breathing is ok, he is needing oxygen off and on but isn't doing well with CPAP at night. It makes him really mad and he gets all sweaty trying to get away from it so when we don't have nurses we just use oxygen so he will sleep and we can sleep.
  • We have nurses starting again - slowly. This week I will have Mon, Thurs and Fri during the day and at least Thurs and Sat nights. I may have more of the nights, but I will find out tomorrow. Pray these nurses will stay!!!!
  • My mom had surgery on Friday and is doing well, she should leave the hospital tomorrow but will have 6-8 weeks recovery so please pray for strength and a quick recovery for her.

Ready for a blessing??!!?!

My mom had a sleep study done last week. She gave one of the men (not sure doctor or nurse) Dillon's story and he said he is a born-again Christian. He wanted to give the story to his coworkers who he had been witnessing to and to a family he knew with two autistics children and to someone he knew with a brain injury. Is this the blessing? Well yes, but it gets better!! She also gave the story to one of the nurses named Heather. Heather came back in in the morning and told my mom that she asked God to forgive her of her sins! My mom asked if she knew she would go to heaven now when she dies. Heather said yes. My mom asked, How do you know? Heather said, well those verses in the book they were promises, is promise the right word? They were promises from God to me.

AMEN! AMEN! AMEN!

To the best we can tell, there will be one more soul in Heaven, one less soul in Hell for all of eternity, because of the life God has called Dillon to have! I always said if there was one person who got saved as a result of this, it would be worth it...well it has happened! Please pray for Heather. My mom called back to the hospital and asked her charge nurse to give her my name and number, but I don't know if the nurse did or not. Pray for her that she will contact us or get involved with a good church some where.

What a blessing!!! You never know when someone is ready to be won to the Lord!

Pictures and videos!

Ronald McDonald House - see Jay sitting near the big Polar Bear
This is the toddler's play room near the kitchen
Daddy holding Dillon in the hospital
Jay playing in our PICU room
First Lolipop!
Yummy!
There's no way he was giving it back
Dillon's get well cards from Mommy, 2 from Jay, from the people Josiah works with, and a lady my mom knows
Flowers! The big one is from my parents and the smaller one is from the people Josiah works with. Aren't they beautiful? Actually, we couldn't have them in our room in the PICU but they were at the nurses station and I smelled them everytime I went by. Thank you!!!! They brightened my day for sure!
Too bad you can't smell the picture :o)

After we got home, Jay was being silly and putting the vest on..on his head that is!
Dillon has been doing great! He has been lifting his head and been more active. By the way - sorry I forgot to tell everyone we came home Friday Sept 19.
Look at him go!
I love my ACTIVE boys
GOOOO DILLON



This video is one I need to send to the Insurance company in order to try to get them to buy Dillon a stander. They don't think he has any movement of his own at all! HA! He wants to stand but needs a LOT of help.


video

Tuesday, September 16, 2008

Dillon out of Surgery

Yesterday Dillon was scheduled to go for tubes/adenoids at 7am, but someone thought he was sick and took him off the schedule so he went from 12am till 5pm with no food hoping they were going to fit him in. They never did.

But today he had the surgery and everything went well. They took the breathing tube out right away which they weren't expecting to do. He was on room air (no CPAP or oxygen) all day. Praise the Lord! He was awake and moving right after the surgery! They only have a nose trumpet in right now - just to help keep his airway open because of swelling. Tomorrow they will probably take it out and see how he does. We are back on the ICU floor and have our own room again.

Thank you for praying, it is such a relief to have him out and off the breathing tube! It will be several more days until they are comfortable with him being off CPAP for 6-8 hours at a time. Hopefully then we can talk about coming home!!!Thank you for praying for him and us.

We have had SO many chances to talk with people and give out his story. So keep praying for all those who are getting it.

There are so many kids and their stories I would love to tell you about, but I can't - there are just too many. I will ask you to pray for three little ones:
1. A - 2 years old. Has had over 40 surgeries to drain the extra fluid his brain is making - there is nothing they can do as the shunts are failing except to do more surgery on his brain every couple of days. They told his mom something about just keep doing the suregeries until she decides to stop (which would mean her little boy would die). Has 5 year old sister

2. J - almost 4 years old. An Amish family that had the room next to our original PICU room. I am not sure what is the under laying cause but he needs bone marrow and now has mold in his lungs. They have tried 10 antibiotics and they are not working. His life is in real danger as this mold in his lungs is not responding well to any treatments. His mom told me they have a "long dark road ahead" and also that they "may not be here much longer". Has 5 month old sister

3. K - 3 years old. Had the 3rd in a set of 3 heart surgeries to try to fix a defect she was born with. Again, I am not sure the details but things are not good and she is now also having trouble with her lungs. Her grandma is the one I have been talking with. Has a 15 month old brother.

PLEASE pray for these three - their lives are standing in the balance, pray for them, pray for their families, pray for wisdom for their doctors, most of all pray for their souls!!!

Friday, September 12, 2008

Job Opportunity

(This pic has nothing to do with the Job Opp, but it is cute and Josiah wanted me to share it with you!)

We need several people willing to be an Assistant with Dillon's therapy program, no experience required, just willing to learn. This is easy and Tiffany or a nurse will always be there with you. We are willing to consider paying whatever you think is a fair wage for your time. If we can't find help, Josiah is considering taking an unpaid leave of absence from work or quitting his job altogether so we can help Dillon get the strength he needs to breathe on his own without CPAP and oxygen and to prevent him from needing a trach and continuing to go downhill.
We need 2 people in addition to Tiffany 6 days a week 8-10 hours a day. Hopefully a nursing agency will be able to provide one of those people most of the time. If you can only do 1 day a week 4-6 hours at a time, this is fine too. Please let us know so we can begin to build a schedule and plan of action.


After Dillon comes home from the hospital, we will start his program a few hours a day and over a few week's span build him up to the full 8-10 hours a day.


Please reply if you know of anyone 12 years or older who would be interested in this or if you would like further information about what this involves.


Again we stress - THIS IS EASY - you will always have Tiffany there with you. You would never be expected to do suctioning, feeding, or other medically involved things, unless you wish to help with that. If you'd like to try it and see if it's something you want to do or not that's fine too.


I know most of my reader's aren't local - but if there is anyone who is or if you know anyone local that would be interested please pass it on. Thanks!!

Update 9-12 1pm

Hello everyone!
First let me say thank you so much for all those who have prayed and called/emailed/commented/etc that to let us know you are praying.

I'll give you a quick update as of now. Dillon was just taken off the PICU floor and sent to the Pulm floor, which is good because they don't consider him in as much danger as he was. They have had him off all oxygen since 10am and he is doing great - as long as he keeps the CPAP on. They want to take him off CPAP for a few hours and use oxygen, just to make sure that he could be taken off of CPAP at home for therapy and stuff if needed. He is so comfortable - probably the most comfortable I have ever seen him in his whole life! He is cooing a lot when we are in the room walking and touching him. Yesterday they had him on 4 liters of oxygen because every time we left it seemed they were giving him seizures meds for things that weren't even seizures. But we talked with them and cleared things up so they won't give him the drugs for the things we are telling them are not seizures.

It looks like the allergy medicine is making a HUGE difference! He has 1/100 of the secretions he had before. So they are not even thinking we need to do the Botox injections! Praise the Lord!!!! I really didn't want to inject a toxin into his glands, so now we don't even need it! They talked with me about it though and are saying that 100% of the time the kids never have pneumonia again - even kids like Dillon. It is something they would have to sedate him for then in radiology inject it into two glands in his neck then every 3-4 months he would have to get more. But they are finding after 4 to 5 treatments the kids need it less and less frequently until they don't need it at all anymore. We have lots of decisions to make here soon!

Our new room phone doesn't work either, but it is a large private room so Jay can play and I don't have to worry about him making noise. What a blessing!! It will make it so much easier for me, plus the computer is right outside my room so I can be on the computer while Jay is in there sleeping (like right now).

What God has shown me: I am finally able, for the first time since was born really, to claim the promise "all things work together for goo to them that love God to those who are called according to his purposes." Why? Because I know this is NOT good, I do not like being here, I don't like the emotional roller coaster of not knowing what is going to happen to my little boy, I don't like being away from home, I don't like to see doctors poke and prod at him. But we have given out so many of his stories and there are so many hurting families here it is humbling. I can only pray God will use Dillon's story to encourage other families here and bring them to a point in their life where they see that they can not only trust God with their child, but with the own life too. To see that sin separates us from having a relationship with the God who knows all and is in control of everything, no matter how crazy it seems here. So you see, this isn't good, but I have a feeling God is using this to work all things together for good.

Song:Yesterday I was singing over and over the chorus of a song Melissa S (from church) wrote. I think I have them all right...
Lord, here's my Issac, I give him back to you,
And when you see my Issac, you'll know my faith is true.
And if you choose to take him, Lord,
Your promise will not cease.
For even though I don't understand it,
by faith I do find peace.
I think that song sums up everything else I need to say.

Wednesday, September 10, 2008

Dillon Update

wfvilzJay sitting on Ronald's lap at the Ronald McDonald House
Standing by another Ronald
Dillon in the ER Sunday after they got him more stable
Jay playing in the pack-n-play in the ER - I will never come here again without it! It is the only place I can put him down without him walking right out of the room and daown the hall to find anyboday and everybody who will talk to him!
Dillon today with the new CPAP machine Poor baby. No it looks bad but he is breathing SO much better with it on.
This is where Jay sleeps for naps! In the bathroom in the pack-n-play - I know I know but it is the ONLY dark quiet place and he falls asleep in 30 seconds - literally!


This is an update my husband sent to the Church today:





Thank you all for praying. Dillon's airway is collapsing and is currently unable to breathe on his own. Dillon will be at Children's Hospital in Philadelphia until he is able to breathe on his own. We don't know how long that will be.



The testing came back and is no pneumonia, virus, or bacteria. Doctors are trying various methods to open the obstruction so he can get air to his lungs. Yesterday when they removed the temporary 4 inch supporting tube in his nasal passage, he started gasping for breathe and the collapsing airway caused alot of negative pressure, so they had to put it in again with oxygen.
Today they removed the nasal trumpet again and put him on Continuous Positive Air Pressure face mask with oxygen. They tried room air, but they need to combine it with oxygen to get him up out of dangerous O2 sat levels.



Dillon cannot be on CPAP all the time. The machines are not portable and are generally used only at night. We are trying to see if the Institutes for the Achievment of Human Potential, who work with children like Dillon, can help with this life threatening repiratory problem.



Another concern is Dillon's secretions. They put him on Glycopyrrolate but his secretions thicken and he can no longer cough them out causing his O2 sats to dip low. !ith alot of suctioning it comes out in big long strings. Since this drug is not working well for him they are trying to drop the levels and want us to consider Botox injections to his salivary glands.



The doctors are hoping that a combination of CPAP and Botox will allow Dillon to avoid the only other possibility: a trachiotomy or trachiostomy which would bring many negative complications.
http://www.tracheostomy.com/care/complications/index.htm
http://www.tracheostomy.com/faq/what.htm
He would be much more home bound. He wouldn't be able to go in a pool or in the bathtub as he could drown. He wouldn't be able to make sounds or vocalize as he does right now. He wouldn't be able to lay on his stomach and lift his head. He would be suseptible to many diseases and would require more vaccinations which we have decided against for him since they can greatly harm brain injured children. There's so many bad things. We really need to pray he won't require a trach.



Ps 42:11 Why art thou cast down, O my soul? and why art thou disquieted within me? hope thou in God: for I shall yet praise him, who is the health of my countenance, and my God.
Hoping in God,
Josiah Kuenzi

Monday, September 08, 2008

Yesterday evening we took Dillon to CHOP ER, he has been having trouble breathing and just needing more oxygen than normal and it was getting worse and worse to the point where we felt he needed to be seen. We were admitted around 1am to the ICU floor.
This is a quick update on him: Dillon does not have pnuemonia so they are waiting for all the blood/stool/secretion cultures to come back and see if they can pinpoint which virus or bacteria is causing his issues. We applied for a Ronald McDonald room for tonight so I don't know yet if we have one. We had a room in the hospital last night and it served its purpose. Dillon is doing pretty good he was only on one liter last night so today I want them to try to lower it. They suctioned a TON out of him in the ER but were gentle and didn't make him bleed. They were calling back for a room with him at a medium critical level then they saw his nose flairing and called it back critical saying the nose flairing is a sign he has really been struggling. It is good we brought him to see if he does need any medication. They are doing albuterol and they did give him one dose of steroid. He does have another ear infection in the opposite ear than last time. I think a lot of this boils down to him needing the tubes placed again. Jay is doing ok so far, but he isn't wanting to sit still I have to keep taking walks and taking him to the play room. I am going to see about taking a few toys back to the room with us. They are also putting Dillon on a mask instead of the nasal O2, so I think we will be able to lower the O2 with that too. His white blood count was 17 (a little on the high side) last night. Today it was 12. Last night his blood sugar was 94, which is higher than it has been. They thought it was from the stress of everything but today it was 120 I think so I am not sure if it is just high since they skipped 2 meals or what.

Well better get back - I will update as I know stuff. I have no working phone in the room and no cell phone but I do have email! Josiah had to go in to work today so it is just Dillon, Jay and I!!

Thursday, September 04, 2008

Sarah Palin - Special Needs!

 Please watch Gov Palin's speech- and pass it on to everyone you know. I got goosebumps when I watched it. While I am having to spend hours and hours fighting stupid games my state insurance is playing to keep from having to buy Dillon equipment, there is someone running for the Vice President of the United States who has promised to be a friend and advocate for families with special needs. Children like Dillon not only need McCain/Palin in power to save their life (Obama is Pro-DEATH) but also need someone like her in charge who will change our government and help these children. (I agree with so many the other issues she talked about that you just have to watch it yourself!)

Please take 36 minutes to watch this - it even has the words beside it to follow along. 

If you do not have time, this is the part with the address to Speical Needs families it is only about 10 minutes long:
Part 1




Tuesday, September 02, 2008

ADORABLE

Hope you enjoy these pictures and videos. Maybe it will bring a smile to your face and warm your heart as it did mine.


Today during physical therapy Dillon actually sat for about 2 minutes with no help! He started to lean to his left and I started calling his name. He turned his head about 25 degrees back to me. His head wobbled a little at one point, but he still maintained his position! Praise the Lord for these little blessings.
Look at him go!
Jay brought Dillon's nebulizer mask over to me and tried putting it on my face, so I let him try it on. Isn't he cute.
Goofing around tonight! Mommy with her boys.
Aren't they sweet together.
On Labor Day we went for a walk with the boys. Jay thought it was great!
It doesn't look like it in this picture, but he was actually smiling very big!
Daddy pushed Jay and Mommy pushed Dillon
By the time we left the store it was dark, but not to worry...Josiah had a flashing yellow light (it didn't turn out too good but it is on the box in front of him)

Video showing Dillon sitting by himself with NO help!

video video

I told Jay to kiss Dillon and he does!