Thursday, May 7, 2009

Today

As we left you in our last entry, Ryan was having his MRI done. The MRI took somewhere around 3 hours to complete and results were read and reported to us quickly. There are no abnormalities in his brain or spinal cord. This is good news for him, does not help Dr. Mantovani make any more suggestions on whether or not this is related to Charlotte's problems, nor does it count that possibility out. Basically, it does not change anything about what we have already been told about Ryan's condition.

When Ryan came up to the PICU following the MRI, we had a long discussion with Dr. Mantovani about what is to come. We will be sending genetic blood tests out tomorrow. We asked some hard questions, questions that we didn't want to ask but need to face. We are wondering where this is all taking us and how fast. One of Dr. Mantovani's primary goals was to get Ryan off the ventilator that was required for the MRI to be done. Then we discussed what needs to happen for us to take Ryan home. We are not left with many options. In order for him to go home, he is not to require "ventilation" as he is currently requiring from the "pressure" behind the oxygen. *Currently he is requiring ventilation and still having labored breathing. The other issue that will limit whether or not he can come home is nutrition. He cannot come home with a NG tube because he is unable to protect his airway (no gag reflex). He would have to have surgery to have a feeding tube placed, and may not make it out of the hospital following the procedure and may not come off of the ventilator either. Our final option is to take Ryan home and recieve hospice supportive care for him, granted he can survive the trip. None of our options have a positive outcome.

The reason Dr. Mantovani is confident that Ryan cannot get better is because the disorder lies in the "maintenance genes" of the cells. They are continuing to deteriorate.

The only good news we do have tonight is that Ryan has been able to be extubated (the ventilator tube is out). He has struggled tonight to be comfortable, having difficulty swallowing his secretions, possibly due to a sore throat from the tube that was there, or from the process that has weakened his body so much. We are currently unsure if the tube will need to be replaced. They are monitoring his blood gasses carefully to determine if his body needs more help to breath.

Right now, we do not want Ryan to experience procedures or tests that cannot improve his quality of life. We want to remember Ryan the way he is, the sweet eyes that look up at us, knowing we are his mommy and daddy. He is perfect.

The Hawns

24 comments:

Anonymous said...

Jenn,
Prayers lifted for you, Ryan, Chris and Charlotte.
Love,
Kelly

Anonymous said...

Oh Hawn family,
I wish I had the right words to say to make you feel better and make it all go away, but unfortunately I know there is nothing better than holding your baby boy right now:) I hate so much that you are now living what I shared with you a year and a half ago. Just hold tight to both of your beautiful babies and make good memories right now because you will never ever forget these days:) Hugs to all of you - call me if you want to chat.

Jennifer, Mike, Nick and Addie Angel

Anonymous said...

I am trying to keep in contact with Sara and have notified some of our CMSU friends to send prayers for your family. I can't imagine what you must be going through, and I wish you didn't have to either. Please know that I think about your family every hour and pray that you recieve good news. I want you to know that I am here for you whatever you need, but I understand if you want this time to be family time with Ryan. Again, let me know if I can cook, babysit, give hugs, make phone calls, etc.

Love and Prayers to you.
Jim, Ali, and Nikolas

Anonymous said...

Chris, Jenn & children,

We are all praying for you and your family and we know that you will somehow find the strength to handle this too. Hugs and kisses to both of you and your beautiful children. God knew what he was doing when he gave both of these children to you. Ryan is constantly on our mind.

Great-aunt Joyce

Anonymous said...

I am so sorry to hear what you are going through. We are all praying for you.

Toni Wozniak

Anonymous said...

My heart is breaking for you guys. Make all the memories you can w/ him. Helen has her class praying for you all and I'm sending out a prayer chain. Prayer can be very powerful! Stay strong and let us know if you need anything!
Karen T

Nancy Keller said...

Jenn, Ryan and Charlotte,

I can't imagine how hard this is for you. You are so brave and so strong. Hold your babies tight and know that you have prayers from your friends in Kansas City.

The Smith Family said...

Jenn,

My heart is bleeding for you. I have no words to say as I cannot imagine what you are going through. I have sent out emails asking for everyone I know to please pray for you and Ryan. Prayers are constantly being sent up for you guys. Enjoy your beautiful little boy.

Justin, Amber & Nathan

Meghan & Jayson Gray said...

We are so incredibly sad for you! We want you to know that you are in our prayers constantly. May God's spirit pour down upon you and bring you and Ryan peace, healing and strength to get through this difficult time, whatever the outcome. May His angels be present among you to guide you down this rocky path.

With lots of love and prayers!
Meghan & Jayson

Anonymous said...

There are no words...none to express the sorrow and heartache I feel for your family. All I can say is that you all are in my thoughts and prayers. May Gods love and peace surround you today and in the days to come. May he guide you, hold you and comfort you.

Stacie, Paul and Katelynn

dickinsonfamily said...

We love you all, and we are praying.
- Mike, Sarah, and Natalie

Nicole said...

Dear Hawn Family,

No words can express how I feel for your little boy and your whole family. You will be in my thoughts and prayers.

Nicole Bricker

Anonymous said...

My heart aches for your family. You are amazing parents and I can't imagine how hard this is to grasp. Please let us know if we can do anything for you. My prayers are with you and your little boy.
Kristen Siebels

The Eberts said...

Jenn,
My heart goes out to all of you. Your family has been in my thoughts and prayers since Charlotte was born and you will continue to be. I've sent out an e-mail to my friends and family to keep your family in their thoughts and prayers.

Andrea Ebert

Anonymous said...

Hi Jenn,

I'm a friend of Andrea's and wanted you to know that we are keeping you and your family in our prayers too. I hope you get some good news from the doctors soon. May God give you the strength and comfort you need to get through each day.
Leslie

Anonymous said...

Jenn and family,
My prayers are with you all.
(Nathan's)Aunt Ellen

Anonymous said...

Hawns~
Im praying for you. I wish I had something to say to make this all go away.
Lizzie

Nathan and Lindsey said...

Jenn, Chris, Charlotte, and Ryan,

I am so sorry to hear about what you are going through. We are all praying for you and thinking about you.

The Tiemeyer's

RandPClayton said...

Jen and Chris. I am sending you both a hug. You are great parents. If a childs life has to be shortened or hard I am glad God gave Ryan the best parents possible. My family is praying for you. Also I did a couple curse words. That is my style. Nurse Clayton. Let me know if I can help. I would be glad to help with Charlotte

Anonymous said...

Jenn,
There are no words to express my feelings to you and your family. I wish there was a way to take the hurt away. Please know that I will continue to send prayers and strength your way! And that there is a whole St.Johns family out there doing the same.
Sarah McNutt

Anonymous said...

Jenn and Chris, I also wish I had the right words to say, but my heart is breaking for you!! You are both truly amazing parents and this should not be happening to you!! Make the most of every moment. You are in our thoughts and prayers. Let us know if you need anything Chris Gilmer

Anonymous said...

Jenn,

I truly believe that you were meant to be a mommy and you have done an amazing job... I am so heartbroken that your time with Ryan may be cut far too short. Keep your babies as close to your heart as you can and trust God to care for you all.

Love and prayers,
Jennifer Spills

Anonymous said...

My name is Rob Mittler. I work for Steve and Tarry at Culligan Water. We the Mittler family can not express our sympathy enough. We know what you are going threw. We lost our 4yr old niece do to a brain aneurism about 4 years ago. It was not something you can plan for. One day you are out back playing in the sandbox, the next your in the hospital wondering why your child has such a bad headache and by the time you go home that night you are planning a funeral. Sometimes life doesn’t seem fair. There is a reason for everything that happens. You two have a very strong loving family that sticks together like glue. I myself read the last two days of your blog for the first time this morning, “Well Sandy read it to me because she was on the computer first” anyway what I was saying is that it hit home. This may be a blessing only God knows. I have thought about it this all day and all I really have to say is “Stay strong for each other.” Your little girl will need you both. Remember children are a gift from God; cherish what time you have with them.

Perhaps you think you never will recover.
Abysses in your heart disturb your pleasure.
Underneath each sunlit ecstasy
Lie shadows of the fortunes of another,
A fate that's both your burden and your treasure

Anonymous said...

Jenn & Chris,
My prayers are going out to you. I wish I knew the right thing to s say. . . I can't imagine what you must be going through. I am working this weekend so if you need anything up at the hospital please let me know and I will get it to you or have someone get it to you. Just call L&D. Your L&D family is here for you, lean on us when you need to.

Michelle Barrier