Baby Cortez » Big Updates

Reading You to Sleep

Oscar — Mon, 15 Mar 2010 15:27:32 +0000

Some wonderful friends of ours, Dan and Serenity Johnson, recently put out a new album and on it, they recorded a beautiful song for Maximillian.

I know I have been telling quite a few of you about it already, but just in case …you can read the lyrics and listen to it here or in the player below.

It is about the nights Max and I spent together, reading “The Lion, the Witch & the Wardrobe”, from C.S. Lewis’ “Chronicles of Narnia” …

“Wrong will be right, when Aslan comes in sight,
At the sound of his roar, sorrows will be no more,
When he bares his teeth, winter meets its death,
And when he shakes his mane, we shall have spring again.” (The Lion The Witch The Wardrobe)

“I have come home at last! This is my real country! I belong here. This is the land I have been looking for all my life, though I never knew it till now…Come further up, come further in!” (The Last Battle)

“Where, O death, is your victory?
Where, O death, is your sting?”
The sting of death is sin, and the power of sin is the law.
But thanks be to God! He gives us the victory through our Lord Jesus Christ.
- 1 Corinthians 15:55-57

Walker-Warburg

Oscar — Tue, 21 Jul 2009 02:23:51 +0000

Max's Book

In talking with some friends this past weekend, I realized I had been reluctant to update all of you on Max’s final “clinical diagnosis” from our last meeting with the genetic counselor … I am sure my reluctance is due in part to the gravity and future-impacting nature of the results. I have attached Dr. Wheeler’s full report as a PDF, though I will say that as complete as it is, it no where describes the person I know as my son.

Some of the main points that are within the report …

Max was diagnosed with Walker-Warburg syndrome.
It is autosomal recessive, meaning that an unaffected parent “carrier” can pass it along to their children.
It would seem that Jodie and I are BOTH carriers … meaning that there is 25% (1 in 4) chance that this could affect future children.
A 14-16 weeks ultrasound would be earliest when we would be able to tell if a future child was affected.

To be brief, we still don’t yet know what this means for us as a family. Obviously the doctor recommended the usual options (artificial insemination, in vitro fertilization, adoption, etc.) … but we haven’t made any decisions yet.

Maximillian Medical Report (PDF)

“Moses answered the people, ‘Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Egyptians you see today you will never see again.’” – Exodus 14:13

“And Mary said: ‘My soul exalts the Lord, and my spirit has rejoiced in God my Savior.’” – Luke 1:46-47

“No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” – Romans 8:37-39

Celebrating Max

Oscar — Mon, 18 May 2009 21:33:38 +0000

Jodie and I would like to invite you and your families to join us in celebrating the life and joy of our beautiful son, Maximillian.

On Thursday, May 21st, between 7 PM and 9 PM, join us in commemorating baby Max in the Student Union Building at Florida Christian College in Kissimmee, FL. Southside Christian Church will be providing refreshments at this informal gathering of family and friends. In the words of Aunt Stephie … “Come and relax, as we celebrate Max!”

On Friday, May 22nd, at 12 Noon there will be a Memorial Service at Poinciana Christian Church in Kissimmee, FL. All are welcome to attend.

We ask that in lieu flowers that donations be made towards Max’s medical expenses. If you would prefer, you can donate online via PayPal.

Oscar & Jodie Cortez
2324 Academy Circle West #304
Kissimmee, FL 34744

We thank you for your continued prayers, love and support … and cannot wait to see you.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10

Love,

The Cortez Family

——————

Directions:
Florida Christian College‎
1011 Bill Beck Blvd.
Kissimmee, FL 34744
(407) 847-8966

Poinciana Christian Church‎
3181 Pleasant Hill Rd, Kissimmee, FL‎
(407) 870-9700‎

3:34 PM

Oscar — Sat, 16 May 2009 19:34:12 +0000

With Maximillian in his arms to the very last second, right around 3:30pm, Daddy and Mommy finally handed over their son to God and welcomed him home.

“Better is one day in your courts, than a thousand elsewhere … For the LORD God is a sun and shield; the LORD bestows favor and honor; no good thing does he withhold from those whose walk is blameless. O LORD Almighty, blessed is the man who trusts in you.” – Psalms 84

4:50pm

Oscar — Fri, 15 May 2009 20:50:09 +0000

Family meeting with medical team at 2pm was a difficult meeting for everyone. The room was packed with supportive staff, Susie, Steph and Colby. Dr Alana began by stating than as we knew Max began this journey facing many major obstacles. His congenital issues were not going to improve, such as his brain and intestinal problems. This included not being able to breathe on his own and not having the ability to digest. Which also means he can’t be fed.

Max’s other systems have also begun to fail. Since the doctor was on shift three days ago,he noticed that Max requires much more ventalator assistance, probably due to his severe lung failure. His brain seems to be unable to regulate his blood pressure. Last week he was treated for PDA (the small hole in his heart), but treatment effected his kidneys causing additional failure. He is not a candidate for surgery. Max has gradual liver failure, relating to the plasma and vitamin K treatments. Since he can’t be fed, nothing can be done.

His eyes have bilateral cataracts and glacouma.

The goal at this point is to minimize further damage to his body and discontinue aggressive therapy.

We agreed with the team that it was in Max’s best interest to not continue any life saving measures and that a DNR ( do not rescitate) would be appropriate.
No further interventions are being done.
His catheter has been removed and they stopped monitoring his oxygen and blood pressure.

Daddy has been holding him for a couple of hours, reading to him. Steph and Colby went to pick up Jim and Sandy from the airport, and an overnight bag for us. We are staying at the hospital in the nesting room on this floor for parents.

Your continuing prayers are sustaining us, thank you all.

Transcribed by Susie

12:54 PM

Oscar — Fri, 15 May 2009 16:54:08 +0000

“Jodie and I are at the hospital now and Max’s room was full people … two RNs (Holly and Jenn) and two RTs (Ron and ?). Jenn let us know that Max had a really rough night and day so far … his potassium is still high (though the continual albuterol doses have brought it down to 7.3). Jenn has another emergency medicine on hand, in case his potassium doesn’t lower … otherwise he could start having arrhythmia. His blood pressure is really low, so he is back on both the dopamine (at 10 mcg) and dobutamine (at 7 mcg). They are raising the dobutamine 1 mcg every 15 minutes unless his blood pressure comes up.”

“He wasn’t urinating, so he is back on a catheter and he has switched his scalp IV a couple of times.”

7:48 PM

Oscar — Thu, 14 May 2009 23:48:38 +0000

“Jodie, Steph and I just came back from the shift change and little Max’s potassium level is still high. Before she left, Jennifer called the doctor and he prescribed an aerosol medication (albuterol) to help with the potassium level. They administered one dose at 6pm, will do the next at 9pm and will check the level again at ~~11pm~~ 11:30pm.”

“Shelly and Kim are his RNs for the night and Christi is his RT. Shelly just weighed him at 7 lbs 10 ounces … which some may be from the edema and some from the fact that he is receiving alot of fluids but is not urinating very much.”

“He is only on Dextrose right now for his fluids, but once they bring up another potassium-free mixture, he will be back on the nutrients.”

Little Baby Face 1

Little Baby Face 2

Little Baby Face 3

Baby Portrait

5:50 PM

Oscar — Thu, 14 May 2009 22:04:13 +0000

“Max’s electrolite levels (specifically potassium) are high right now … his RN Jennifer is working to find the problem (two small IV blood draws so far) and lower it, since too high of a potassium level ‘can be lethal’.”

“While she was testing his levels, she let Dad change his diaper … he definitely put it on backwards at first.”

Cortez Family Photos

Oscar — Thu, 14 May 2009 00:05:33 +0000

Max got to spend some time yesterday with pretty much all of the immediate Cortez family (we missed the rest of you) … at one point there were even 4 generations in one picture! As you can see from the video below, while he was with Aunt Margie, he even did a bit of breathing on his own.

4:54 PM

Oscar — Wed, 13 May 2009 20:54:38 +0000

Jodie just sent me these two texts:

“The RT named Vorarut just came in to check things and reminded me that Max is on the lowest setting(s) for his ventilator and the next step if they can ween him off of the respirator is called a C-pap. It is a different kind of breathing system that keeps the lungs open so there is very little effort needed to breathe.”

“Also the RT checked the machine and said Max’s ratio is 1 breath to the respirator’s 5 breaths.”

“Finally, be strong in the Lord and in the power of His might.” – Ephesians 6:10