Tuesday, September 30, 2008
Monday, September 29, 2008
Sunday, September 28, 2008
- 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!
Daddy holding Dillon in the hospital
Jay playing in our PICU room
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
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.
Tuesday, September 16, 2008
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
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.
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...
Wednesday, September 10, 2008
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.
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,
Monday, September 08, 2008
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
Tuesday, September 02, 2008
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!
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!
I told Jay to kiss Dillon and he does!