Wednesday, March 16, 2011

Back at it again

Matthew was home for about 12 hours before the vomiting ensued. He has not kept his meds down for three days and is having numerous yucky seizures. He has now had three where he completely quit breathing for 45 seconds to 1 minute. The poor guy is having a rough go.

We took him to our pediatricians office today for a follow-up from the hospital. We discussed everything we have tried, and what we have left to try. Basically there are two surgeries we could do that would keep his medications down, but they wouldn't stop the retching. Both surgeries Steve and I are unwilling to put Matthew through; because they wouldn't solve the problem and his discomfort of retching. They would merely provide us a way "to keep him alive". Our pediatrician agrees whole-heartedly that that is the best decision for Matthew.

We meet with an ENT on Friday to discuss botox for Matthew's salivary glands. It is a fairly simple procedure that would make his salivary glands not produce saliva. We believe that a good portion of Matthew's issue is that he makes A LOT of saliva, and he has a super sensitive gag reflex. He also has difficulties swallowing his secretions, so when they build up, it gags him and then he can't stop. He is on a medication right now to help dry up his secretions, but it's not enough. We are hoping that this procedure will help Matthew. He will most likely have to be sedated as it includes putting a needle in his mouth; but it is our best chance at giving him happy days.

Right now, for the most part, Matthew's days are not comfortable. He throws up and retches alot, is having horrible seizures, and is generally uncomfortable. Our family has two goals or "must have's" for Matthew. Comfort and happiness. Right now we aren't achieving those. In a tearful conversation with our pediatrician, she discussed that if the botox doesn't help; we don't have any other options to make him comfortable and living. None. We will at that time need to make a decision about what is best for Matthew. Being alive and "living" are two different things. Right now Matthew is alive, but not living. He is having more bad days than good. And I don't want to put him through hell just to keep him on this earth. That is not life. And we are not willing to subject him to that just so he can be "alive".

Would you pray with us as we may have to make some incredibly hard decisions over the next few days and weeks? We love Matthew so much; and we want to do what is best for him and what keeps him the most comfortable.

17 comments:

Echoes of Mercy said...

Oh, Jill...we are so very sorry to read of the decision that your family is facing. We will continually hold you up in prayer as you seek God's wisdom and guidance. May the comfort that only HE can bring be with you each step of the way.

Schaechers

Michelle Grynol said...

I am so sorry to hear this. I will continue to pray for Matthew and your family.

Tara said...

Sending prayers.

Rachel McElvain said...

My heart aches for you. I pray for the decisions you must make and for comfort for you and for Matthew.

Carla said...

praying for & praying for Matthew

mikesmrs said...

I've been following your blog for some time now, but have never posted. Matthew and your entire family has been in my prayers. I'm sure there are many others, like me, who are praying for you. God Bless you in the days ahead.

Anonymous said...

My prayers are with you all at such a hard time. May God hold you all close and bring you comfort, and sustain you through this all. Hugs to you all

Anonymous said...

Jill, Steve and Family,

You guys are on top of our prayer list. We are so sorry that you guys have to make this kind of decision. God is with you to give you comfort.

Love your friends from Kearney, NE,

Jeff, Cindy, Megan, & Christian

sherrilee said...

Oh, Jill. What can a person say...we are praying for comfort for all of your family. Praying God holds you gently in his palm.

Brad and Amy said...

Oh, Jill, I am so very sorry to hear this news. I will pray for Matthew and your family.

Quinn's Diary said...

we are praying, and I hope you don't mind that I've posted you on our blog with Matthew's picture, and am asking for prayers for you. You are strong. I'm praying hard, as I don't know what else to do. Please let us know if there is anything else we can do!

Amy said...

I've been following Matthew's story for a while when a friend asked her blog readers to pray for him. Your entire family have been in my prayers. As a Mommy of 2, I can't imagine the pain you are going through. Praying that God will hold little Matthew in His hands and wrap Him with peace and comfort.

Josephine said...

My heart aches for you. What a sad situation. I will pray that the botox will help all his miserable symptoms, and I especially pray that you will not have to face such a heart wrenching decision.

Melissa said...

Jill and Steve,

Prayer chains have started. thinking and praying for you. love you guys.

Kristen said...

There is a deep ache I feel, it's accompanied by so much fear and pain as I can only imagine what you are feeling. I am so sorry. You are experiencing the worse fear of every Hydro mama's heart and oh that grieves me! I can barely see through my tear-filled eyes as I type. I want more than this for you, for Matthew, for your family. We continue to be on our knees seeking God for Matthew.

"Mercy, Lord, mercy please!"

I wish I could be with you! I miss that little guy so badly!

Taya said...

Have you tried or considered a J-tube? Thinking of you and your family.

Anonymous said...

Oh Jill - my heart breaks for Matthew (as well as you and your family)! Please know that you are always in my prayers - prayers for God's guidance, strength, comfort for Matthew and a peace that passes all understanding! Please let me know if there is ANYTHING I can do - I would love to bring supper, or run errands for you so you can spend time with your precious little man. I am just a phone call away - don't be afraid to call!!!!!
Love - Kilee Oetjen