Saturday, October 28, 2006

My mom's birthday was the 26th (Happy Birthday!) so on the 25th when Dillon did very well for the therapist she said it was the best birthday present Dillon could have given her. The Physical Therapist, Deb, said she only felt Dillon trying to lift his head if I was shining a red light on his face. When I turned the light off Deb didn't feel Dillon trying as hard. I took the light to Dillon's right and his eyes quickly caught up with it and then his head even turned a little! We couldn't get him to do it the other way. It is possible the right field of vision is better for him, or that he just didn't feel like doing it again, and it is even possible that he didn't mean to do it - but for now we will take it as good news. Then the Speech Therapist, Karen, said she is pretty sure she is seeing him swallow sometimes!!! We can't be sure though, all we are going on is looking at his throat and seeing if it moves at all. We think we see it! She is going to talk to her friend who does swallow studies to see if in a few weeks if we can get Dillon in so we can be sure one way or the other. What a blessing to have these pieces of good news! God is still working in Dillon's little body. Maybe He will use the decreased medicine to bring about a lot of changes in him. Dillon is now only on Keppra, but it will take about another week for the phen. To be out of his body.
Josiah started his second job on Tuesday. He leaves the house at 8:30am I take him up dinner and get to see him from about 5:30-6:00pm then he comes home at 2:15am. This should only last for 6-9 months, Lord Willing. I miss him very much, but we both know we need for him to do this right now. We need to get out of debt then we should be fine.
We were in special meeting this week with Bro. Milton Martin. He spoke a lot about the churches in South America that are a product from his ministry. There are over 300 churches that have been started out of his work there. Praise God! These churches were always self-supporting and reproducing! Thursday night he spoke on truly believing in prayer. Do we? Do you? Do you really believe that if you gather together and pray for the church service or for a person salvation that God will bring it to pass? I think we all are lacking in this area. Bro Martin also pointed out how so often we pray for physical needs and not spiritual. Will you pray for the health and even life of a person and forget to pray for salvation? I know I do. I pray nonstop for Dillon's health needs, but I have given up on believing Dillon will ever be capable of making the decision to get saved. What if I am wrong - what if God heals him and he one day needs to make that decision...Will I wonder if my lack of prayer for him played a part in him dying and going to Hell? What about your family, do you pray when they are sick and forget to pray for soul? Or do we remember, but have such little faith that God will save them that it seems like a waste of time to pray?
Thursday night I got home from church and went downstairs to pump for Dillon, eat ice cream then get a shower and give Dillon a bath. Wow, did my night change! I put Dillon down on my bed and had his feeding tube in my mouth as he was just finishing his meal. The whole Mic Key button popped right out of his tummy! I was on speaker phone with my mom when it happened. I started to panic, I knew this could happen but it was the first time that it did and I was so scared. I didn't know if I had hurt him or not, I was shaking so bad that after four attempts to put it back in (like the doctors had told me to do) I just gathered him up as quickly as I could, tossed him in the car, put my four-ways on and drove as fast as I could to the ER. I went to a place that is much cheaper and only .2 miles further than the main hospital and they said they couldn't do it so I rushed him into the major hospital's ER, Lehigh Valley Hospital. I sat there for about 10 minutes until the nurse called me back to check his temperature, blood pressure, etc. She asked about his breathing being so heavy, this is normal for him though. She also asked what his blood oxygen normally is, I told her 92-100 it was 92-93 so it was good. I showed her the discharge papers from St. Chris when she asked about his medical history. I even showed her that I had a new Mic Key button for them already. I told her everything! I even told her his diagnosis - every detail I could. I asked how long it will take before it starts to close up - she told me it would be hours before that would happen. So after being there an hour I went up and asked how much longer, they basically ignored me. At an hour and a half I asked again. They said it is based on your condition because I told them I saw 6 people come in after him and go back before him. (I couldn't even tell what was wrong with 4 of them - they couldn't have been that sick. There was no blood, no crying, no moaning, no limping, no holding a certain body part, NOTHING!) I told them that he is a baby and needs to be seen, they once again blew me off. I finally asked the nurse when he was going to be seen that he needs to eat again soon. (I know he will be okay for a while, but I am not dumb I know once you get to go back it will still be another 3 hours before you go home!) She said, "When did he eat last?" "8pm" :Oh, he will be fine!" She was so rude and then she walked away. I started to cry, I was getting so angry! They weren't helping my son, I knew he needed the tube put back in soon and they didn't care. I called my husband again, this time in tears. His second job is about 5 minutes from there so he came right over and FINALLY they took him back. It is crazy that I have to get to the point of tears for them to help my 4 months old baby! While we waited for the doctor the insurance lady came in - so they want to be sure they know HOW they are going to be paid before they every DO anything to be paid for! Next time I am refusing to give them information until they help him. Once the doctor came in he looked at it and I said, "It is starting to close already, isn't it?" He said "Yes." I about lost it! My fist were as tight as I could be and my jaw being clenched shut was the only thing that kept me from yelling. They said it was too tight, they couldn't get the button in again. They told us they were going to have to get the surgeon to look at him, he may need surgery to put it in again! As you can imagine I am doing everything I can to not lose my testimony and go choke that nurse! Finally they put a smaller tube in that would work as a temporary feeding tube until I could take him to St. Chris the next day. Can you believe that a world known hospital such as Lehigh Valley could not take the time and be bothered enough to have a doctor come help Dillon so they took the easy way out and let me take him to Philly the next day. I am filing a written complaint against the nurse on Monday. She lied to me and it almost cost my son surgery. As you read in a old post, Faith died from a feeding tube surgery and this dumb nurse almost made Dillon have to go through it again. I took him to St. Chris right away the next day, they don't take patience in surgery clinic on Fridays but they were more than happy to help him and get it taken care of right away. It hurt Dillon when they pushed it in again ("thank you" to nurse Olga for that one!). They then wanted to Xray him to be sure it was in right, but my insurance is messed up right now, so they took the time to call and make sure they would pay for it. They care! They really care about Dillon and want him to be safe. I have even more appreciation for St. Christopher's now.
What a week - I plan to enjoy the weekend - hope you all do the same!

10 comments:

Anonymous said...

Hi there,

What a week everyone is having. T you are my hero and a fine example of a Christian Lady. I am proud that you are my niece. Both you and Tori mean so much to Uncle Joel and me, our church feel like that they already know Dillion. I am thankful that Aundrea and Natalie has two Godly cousins to look up to.I realize that many others feel that way too. I just wanted to let you know that our church pray for Dillion continually. Many ladies in the church ask about him and they will be happy when I relay this report to them.

The past two weeks we have had one of our missionaries here. Bro Bob is planning to leaving for Uragray (dont' remember how to spell it) on the 12th of Nov. He has CP and is a tremendous blessing. I shared with him about Dillion, he asked me to tell you that he would be praying for Dillion - that God would use Dillion in a great way.

We will keep all of you in our prayers.
Love ya so much
Aunt Nae

Anonymous said...

Hi there,

What a week everyone is having. T you are my hero and a fine example of a Christian Lady. I am proud that you are my niece. Both you and Tori mean so much to Uncle Joel and me, our church feel like that they already know Dillion. I am thankful that Aundrea and Natalie has two Godly cousins to look up to.I realize that many others feel that way too. I just wanted to let you know that our church pray for Dillion continually. Many ladies in the church ask about him and they will be happy when I relay this report to them.

The past two weeks we have had one of our missionaries here. Bro Bob is planning to leaving for Uragray (dont' remember how to spell it) on the 12th of Nov. He has CP and is a tremendous blessing. I shared with him about Dillion, he asked me to tell you that he would be praying for Dillion - that God would use Dillion in a great way.

We will keep all of you in our prayers.
Love ya so much
Aunt Nae

Jenn said...

Hugs! Again! (I posted a bit ago on one of your July posts--where you talk about your son's head falling in the carseat).

I can SO empathize with you! I HATE LVH! Last fall my hubby was sick--running a 104 degree fever for about 4 days when our GP told him that he should go in to get some tests done. And even though the Dr. had called ahead, we STILL sat in the waiting room for at least 4 hours before he got seen.

Then all of a sudden someone decided that he might have the flu...and they were treating us like he had the black plague. Don't even get me going on what I think of all the scare mongering that is done every year regarding the flu... But they put a big flourescent warning sticker on his door, everyone was wearing masks who entered his room (they even offered one to me, and when I later had to bring our kids in, they questioned if I was sure it was okay for them to go in with him. I felt like saying "look genious, we live with him. If we haven't caught what he has already, we aren't going to catch it.")

Meanwhile I had "farmed out" our 4 children in the morning, but had told everyone that I expected to pick them up in the early afternoon...so I had to go around picking them all up...

And they did a COMPLETELY unnecessary and extremely painful test on my hubby (spinal tap), and really played down the side effects. They were testing for meningitis--because the Dr. didn't have the courage to say "he really doesn't have any symptoms of it like a sore, stiff neck..." He just was thinking of covering his butt as far as liability, and said "well if someone runs a fever for this long, it is a possibility..." I didnt' want my hubby to get the test because I didn't think he needed it, but I didn't want to make the decision for him. If I had been thinking straight I could have listed off the side effects...but when it is someone you love, sometimes your brain shuts down, KWIM? And of course they also misled us about how long it would take to get the test results back. "It will be about an hour" 3 hours later... If we had known it was going to take that long to get the results we would have left and told them to call us with the results. Anyway...he did indeed have a spinal headache as a result of the test for about 2 days. As if he needed that on top of the fever.

Turned out he had mono--they didn't figure that out for a bit more than a week. They don't routinely test 43 year old men for mono. LOL

Jennifer H. and Jerold said...

Hugs, Kisses and Prayers from your dark sista in christ and your little chocolate brother JJ. I'm sorry to read the stress you went through with the hospital. It's so wonderful to hear the uplifting progress Dillon is experiencing. Continue with hope. We love you guys.

Jen and Jerold (from BHBC)

Anonymous said...

Please tell Tiffany and Si that I am still praying for all of them and you both so that all will be better in the future.
Love Aunt Helvi

Anonymous said...

Tiffany,

You are doing terrific job as a mother of a boy, a wife of a husband, and a child of GOD! I have no doubt that Jesus is putting his Hand on Dillon, "[Let] little children come unto me." (Matt 19:14) I know you have up and down. But do not be hard on you. God will take care of you too. Thank you for your testimony. We are praying for you.



Your brother and sister in Christ

Jun and Naoko

Anonymous said...

Praise the Lord! I was so worried. I am so glad he hears our prayers.

Love
Michelle Magazine

Mom K. said...

Hi Tiffany,
I was thinking about how God's ways and thoughts are so much higher than ours. I don't like for my kids to go through hard times and yet sometimes I know it is best. How much more, God knows exactly what we need although we can't see why we would need such trials.
I'm glad to hear that the therapists are hopeful for some physical progress. Have you had a chance to talk to any of them about spiritual things yet? I'm praying for our little Sweetie. Because of his difficulties Grandma has had some unusual opportunities to witness to people at the hospital. I know that God has other purposes besides this but we need to take every chance we get to use it to honour our LORD. Your words on prayer are so true. Oh how we need to pray more diligently. James 5:16-18
Yes, indeed, hospitals can be trying places, especially emergency rooms.
I'm glad that you can take dinner to Si and get to see him.
Sending hugs to you all.

magsmommy said...

Tiffany,

I am so sorry to hear about everything you had to go through with the hospital. My daughter has a button too, but hers has never come out. It is so sad what we as parents have to go through in order to make nurses and doctors understand about our special needs kids.

I will be praying for your family and for Dillion that he continues to progress. I will also be praying for his salvation. I have had the same thoughts and fears concerning my daughter. I don't know if she will ever be able to make a decision for herself. But, God knows her and her heart better than I ever could, so I know that she is fully in His hands.

Blessings to you.

Michelle

Life full of blessings said...

HI Tiffany,
I SOOOOO know how it was for you!!! When Ezzy's Mic Key fell out the first time, I was shaking trying to get it back in. The thing was, for him, it had been out for probably 3ish hours, cause when I went to feed him, it was laying stuck to his belly and the hole was already closing....it probably was there for hours...I felt so bad!! So after trying to twist it in and having Ezzy wiggle around in obvious pain...we called my mom to come stay with the girls, this is at 10:30 at night :) and we were off to our local hospital, where they know NOTHING about feeding tubes, grrrr...they put a very small tube in, as best as the could after much work and then sent us 1.5 hrs. away to the hospital he used to be seen at, where they were able to get in back in...after MUCH prayer on our part!!! We did not want to have to have another surgery!!! We had our back up button ready to go too.
It was nice to read of your experiecne, only because it is nice to know I am not alone in this feeding tube world!!! :) We actually NEVER are alone, God IS with us and helps us....often it is to bite our tongues,huh?? :)
OK, Well stay strong and I love your spunk in regards to getting the care you need for you son!!! YOU GO GIRL!!! You NEED to be that way in the "world" of special needs....trust me!
IN HIS LOVE AND GRACE,
a fellow mommy friend,
Liz :)