Christianity Oasis Member Forum & Chat Room

My sister posts in an online journal for family and friends to keep up with my niece's conditions and treatments..this is what she posted today. Please keep her and her daughter in your prayers. Thank you for your continued prayers and His will be done.

love you all

In Jesus,
love momo

Monday, September 26, 2011 12:17 AM
Dear Faithful Friends,

Several days have past since my last journal update, thank you for remaining faithful and checking Taylor’s site. Taylor’s medical history is very complex and long. This November it will be six long years. In all honesty I have been playing the “what if” game for the past few days. What if Taylor was not sick? What if Taylor is always sick? NOT a good thing. I need to remain faithful and turn to my bible during these difficult days. There are three bible verses tonight that are on my heart.



... but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Isaiah 40:31 (NIV)



Jesus replied, "What is impossible with men is possible with God."
Luke 18:27 (NIV)


I can do everything through him who gives me strength.
Philippians 4:13 (NIV)

In addition, tonight I remembered a quote from Pastor Joel Osteen that I had read shortly after my Mom passed away that helped me during that difficult time and is helping me now. The quote states “Do not put a question mark where God has already put a period!” He IS in control, HE has a plan!

Taylor’s condition had remained about the same until today. Today was not a good day. She has really been uncomfortable and very nauseous all day. The medications at times were unable to prevent her from getting sick several times; this in return causes more pain. The awful cycle continues. In addition, she is in a full flare of her Muckle-Wells syndrome. After the surgeon was informed of Taylor’s condition she came to see her right away. She felt it was best to do some additional testing to see if something else was going on. We started with an x-ray. While the news was not good, it could have been much worse. Unfortunately, Taylor does have an Ilesis. (Bowel obstruction)The best guess is that she has significant swelling and inflammation internally. The obstruction is not complete and at this time no surgery is necessary, but both could change at any time. Thankfully Taylor does have a “G” tube and is able to use it to decompress. A new “cocktail” of anti nausea medication and steroids have been added to help relieve some of her discomfort. The doctor also are continuing to try new pain medications but most likely Taylor will start the pain patches she had used previously with good results.

I switched with Mike late this afternoon. It always is good for me to come home and spend some time with Makayla, Nick and Nate! It feels good to do “normal” mom things like paint Kayla toes and make homemade salsa for Nick. Take a hot bath and sleep in my bed. Tomorrow I will be rested and ready to face the day!



Please continue to pray for healing for Taylor, comfort for Makayla, Nick and Nate, and FAITHFULNESS for all!



Much Love,

Mari

Oh Heavenly Father...The children Father, the children.
Jesus wept. We know our Father cause we know your son, Jesus.
And, Jesus wept. I believed you wept, Father, for your son.
This is why my gut wrenches with the pain of the suffering children.
There are so many. So many to weep for. And I belive Jesus weeps because the Spirit
inside of me weeps for them.

FATHER! I cry out! Let this cup pass!
But not my will... Thy Kingdom come, thy will be done on earth as it is in heaven.
There was a purpose for which Jesus suffered.
What is the purpose for these innocent children must suffer?
Father, our trust is in you. There are things we know not.
But in you is our faith and trust. To you, we give our children.

As those, in the days of Jesus, did not always see. We, where blind, commit our selves to you through faith.
As I wipe away the tears, I know that you have a plan for all your children. To bring glory to you, Father.
In your way, in your time, our children will glorify you, and you will glorify them, according to your perfect will.
That is what we will rejoice in.

In all this, we ask Jesus to intercede for the parentrs and surrounding family, to provide strength of faith,
guidance, courage, hope, and commitment to you, Father.

This may not be a pretty prayer. It may be a bit rambling. But, Father, you know it comes straight from
the depths of my heart. Pure and true. Cause its for the children, Father. Its for, Your, children.

Praise be to God!
In our Savior's Holy name, Jesus, we pray.

( So much more in my prayer closet. So, So much more!)

God Bless You, Taylor.

Timothy

Thank you, bro Timothy for your prayers..and I stand with you in agreement. Thank You, Lord God for what you are doing and for what You will go. In the name of Jesus, not our will be done, but Yours.

In Jesus,
love momo

Dear Lord, we gather together as we pray for Taylor. We pray, in the name of our great healer of all, "Jesus", may he place his hands on Taylor. May he comfort and strengthen the family, as we pray for healing.
Amen.

Hi ServeGod, and thank your for your paryers. Im standing in agreement with you also. His will be done.

In Jesus,
love momo

Standing in agreement ServeGod and momof3...Amen.

Timothy

This is the update we received this morning. Thank you for your continued prayers. His perfect will be done.

Gos bless you alls.

In Jesus,
love momo

Tuesday, September 27, 2011 8:50 AM
Please pray for Taylor. Her condition is getting worse. We had a very difficult evening and night. With included a move to another room (not just us, entire floor) Her stomach is very distended, she is vomiting, heartrate is up and running a fever with chills. All not good signs with an Ilesis.Doctor has been called and on her way to see us now.

Will update soon.

This young girl has another condition my sister hasnt mentioned in these postings. She has a valve in her kidney that somehow causes her blood pressure to rise. I dont know the whole extent of it, but I know she is on medication for it. Thank you for your continued prayers and please know you remain in mine

Last night while praying for Taylor, I asked the lord to give me a pray. I opened the bible randomly, and it opened to act 3
Act 3:6 NKJV
Then Peter said 'Sliver and gold I do not have, but what I do have I give you. IN the name of Jesus Christ of Nazareth, rise and walk, and he took him by the right hand and lifted him up, and immediately his feet and ankle bones received strength.

So Let us pray in the name Of Jesus Christ of Nazareth, that Taylor will be healed.
We pray that your comfort and pressence will be with Taylor and her family.
Amen

I join in agreement with all prayers offered. May Gods Love, Peace, Grace, Comfort & Healing be with Taylor.

In Jesus Name, Amen
Dan

I thank the Lord for you all. Thank you for your continued prayers. For years now, we have been praying for this girl. Once in awhile Id post a prayer request for her here in Oasis. When I asked my sister if she would mind if I posted her updates here, she cried. She believes also, raise your petitions to the Lord..and His will be done in all things. This was the update from last nite. May God bless and heal and touch each need you may have, in the name of Jesus. Your will be done, Father.

Tuesday, September 27, 2011 9:29 PM
Dear Friends,

I have tried several times to update. Been very busy today with several long bedside visits from doctors and we think we have a better treatment plan now.

The surgeon again spoke to us at length. She is hesitant to do a CT at this point, as she already knows (as we all do) that Taylor does have an Ileus and doesnt think the treatment plan currently would change and surgery would only be a last resort emergency. She did decide to put her “J” tube to gravity/vent in addition to her “G” tube. She is hopeful that this will help with the distention.




The Pain doctor has added two different pain patches and a new nausea medication. Both patches will take a few days to get to full therapeutic levels so she also increased the IV pain medication for the next few days. We thankfully did see improvement with her pain level with the new dose!




In addition, the attending doctor, at the suggestion of his resident, has ordered a new medication for the treatment of motility issues that pain medications have on the GI track. This will be given as a sub-q shot either every other day or daily. Motility is a major issue for Taylor. On the x ray this weekend and today, contrast was still in her colon from her study done the first week of August! Normally this will only been seen for about 24-48 hours max.


In closing tonight, we thank you for your continued prayer. Taylor is again waiting for her Ileus to clear, which is very frustrating and painful. Last time it took just over four weeks. We pray that this time it will resolve quickly. Better yet, we pray for a miracle, complete healing of her entire GI track!


Much Love,

Mari



I should also mention this young girl has a condition called Muckle-Wells. She is given a shot weekly to keep it from going into full blown symptoms. When her body reaches a certain amount of pain, she passes out. Out of the blue, the pain will hit and she is out.

God bless you guys.

In Jesus,
love momo

Here's today's update. Thank you all for your continued prayers. They are much appreciated. God's will be done.

God bless you!

In Jesus,
love momo

Friday, September 30, 2011 11:30 PM
Dearest Friends,

**this post does contain some graphic info, but I feel necessary to fully explain Taylor’s medical status. **

Early this afternoon, prior to test, we were informed that Taylor would not be able to go home on Sunday as hoped, as her medical status is not stable enough yet.

Taylor was able to go for her upper GI test around 3:45. I am so thankful that here I am able to go with her into the room for the test. A few minutes into the test, it was clear that Taylor did have an intussusception of the duodenum (2nd level) .This is just a bit higher than where it was in April. During the test, the interventional radiologist had to use a paddle/spoon tool to push down on her abdomen right above the area. This caused severe pain. However, while he continued to push the area of intussusception (like a telescope) it cleared briefly only to return to the position and cause an intussusception again. The radiologist then asked if Taylor was having times of more pain, less pain then more pain again. Yes, she has for the past week. He then said that based on what he just saw, that the duodenum is telescoping in and out causing ongoing intussusception/clearing over and over. The radiologist then informed us that he was going to call Taylor’s surgeon right away. We were takien quickly back to her room so she could get pain IV medication and hook her “G” tube to suction. Almost immediately, the suction tube filled with blood. Taylor became very upset and worried, (as was I). The nurse quickly called the doctor and within a few minutes, we had three doctors from her attending team in her room. We had to wait about 1 ½ for the surgery to come, as they had a severe trauma in the ER. Thankfully, the blood was not all “fresh” and even though it was s large amount, it was mostly “old” blood. The best explanation for the blood is that the original area of intussusception had collected the blood and when it cleared, the blood freed, thus flowing back into the stomach and bowel. Our regular surgeon was called but no longer at the hospital but is aware of Taylor’s situation. The surgery senior resident, which assisted on Taylor’s surgery and following her all week,Came to speak to Taylor, Mike and I. He explained, while her condition is serious at this point she does not need immediate surgery. We discussed many different possible options, but know the her surgeon will need to make the final decision of if or any surgical intervention can or should be done. None of the options are simple and each has serious risk. The surgeon, Taylor, Mike and I will need to have a long and very serious discussion Monday. At anytime Taylor’s condition changes for the worst, of course the plan would change.

After several stressful hours, Taylor was able to visit a short time with her brothers and her Aunt Lori. She now is sleeping, for what I hope and pray for is several hours!

Please pray for healing, comfort and strength for Taylor. Pray for wisdom for all doctors and nurses that care for her. Tomorrow will be full of changes. I need to go home in morning to help Makayla get dressed for Homecoming. Monday, Mike will start a job here locally and will need to stay with Taylor nightly at hospital. I will be at home to get Makayla, Nick and Nate off to school, then come to hospital for a few hours and leave to pick up boys by 3pm. Taylor will be left alone for a few hours until Mike returns from work. While I know she will be ok, this will be very different for all. In the six years she has been sick, we have not left her alone for more than an hour.


In closing, I am feeling a bit overwhelmed, however, clinging to HIS promise. I will end with Taylor’s favorite verse….


Philippians 4:6-7

New International Version (NIV)


6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.


Much Love,
Mari