My little Patriot! 

July was a tumultuous month ending with Matthew's surgery. 

In August they closed his chest and the healing began. 

Early September brought the famous "Race Car Outfit" smile 

This one is so cute I couldn't resist. We were almost home when this photo was taken. Mommy has the same effect on me too. 

Now we are in to October...And the Month is still young. 

Matthew is off of Vapotherm and on a Nasal Cannula with humidified oxygen. The line across his nose is very small and the reduced flow is probably much more comfortable for him. This is a much easier breathing system for him to have at home. With all that he has been through in the last five months, Terri and I find it difficult to think in terms of managing Matthew at home.
 

Now that's more like it!

Eat your heart out Uncle Keith. Matthew was wide awake when Terri and I arrived at his room this morning. So us boys donned our 49'er apparel, and sat down together to read a few stories from our favorite Sunday book, "The Catholic Book of Bible Stories". After that we got down to the business of watching football. I couldn't get over how alert he was today. He had radar lock on my eyes. Grandma and Grandpa Wright came to visit today and Matthew could not stop smiling at his Grandma. It was a wonderful visit.

This afternoon we received a phone call stating that our friend Trish had gone into labor and was at Sunrise Hospital. So Terri and I went down stairs to see her and her husband Avner. She was 12 hours or so away from giving birth. We are so excited for them. I can clearly remember the day Matthew was born. Congratulations Trish & Avner.
 

Matthew is tolerating his feeds very well. During the day he gets 65ml every 3 hours. At night he gets continuous feeds at a slow delivery rate of 1 ounce per hour. Terri noticed some redness on his abdomen around his feeding tube. The doctors looked at it and prescribed antibiodics and a topical medicine to fight off any possible infection. I am so relieved that I won't have to put any more feeding tubes down his nose into his stomach.
 

Matthew was extubated successfully just after 11pm last night and put back on Vapotherm. As usual, there were several medical professionals in the room for the big event. There was Dr. Daugherty, Dr. Aguillar, Ron the Respiratory Therapist, and Debbie his nurse. On his bed were a stack of wrapped items to have handy in the case of emergency. Ron used adhesive remover to carefully remove the tape holding the Endotrachial Tube in place. Ron and Debbie removed the tube and donned his Nasal Cannula. With all eyes on Matthew to evaluate his ability to breathe, he looked over at Debbie, squirmed a bit when the cannula was taped to his face, and then fell right back to sleep. He truly is "Mr. Anticlimactic".
 

The tube coming out of Matthew's abdomen is his new "G-Tube". He will receive his feeds and be burped through this tube. 

Just like Grandma Wright has often said, Matthew is getting famous. Terri just called me and said a local news channel wants to do a story on him. also, if you go to www.blogsearch.google.com and type in "whomagoo" you will find multiple references to Matthew's Blog! How amazing that a heart with a "defect" can still supply so much love and compassion to so many.

Matthew made it through is surgery today with flying colors! He has to undergo a Brochoscopy this evening to check his airway and then they will work towards extubating him and placing him back on Vapotherm. We are one tube closer to seeing his whole face since his feeds will now go through his abdomen. 

When I came into his room last night Matthew was cuddling with Dart his froggy friend. 

Matthew and Rebecca during physical therapy

Terri Spoke with Dr. Reyna today. He is the surgeon that will be performing Matthew�s surgery tomorrow. As of this moment everything is on schedule. He believes that Matthew�s digestive tract is normal enough to do the procedure Laproscopically which means he will use small incisions to insert small tools and a scope. This will negate the need for another large incision. Dr. Reyna said this procedure should really help Matthew to have less reflux, to receive more nutrients, and grow stronger. Terri told the doctor about our desire to circumcise Matthew so he agreed to do that at the same time. Matthew was in a much better mood today. The only time he became upset was during his respiratory treatment but that is ok because he inhales the nebulized medicines more deeply when he is crying.
 

Casey has been coming to see Matthew everyday. It means a lot to me to have a caring male influence at the hospital while I�m at work. Terri says Casey holds his little brother, talks to him, and entertains him with stuffed animals.
 

You would never know it to look at this photo but yesterday was one of our toughest visits. Before we left the house we were told that Matthew was approved for Social Security. By the time we got to the hospital, it came to light that we were approved in California not in Nevada. Then, while Terri worked the phones and faxed letters, I got to hold Matthew. After some time I could hear his breathing become congested. Matthew�s Nurse Aimee helped me suction his nose and got a small glob of snot out. No sooner was the suctioning done, then Matthew became extremely agitated, cried profusely, and turned as blue as the Boppy shown in this picture. Aimee had to give him a dose of Versed to calm him down because in his anger, his airways had clamped down.
 

I just talked to Terri. She said the doctors are telling here if all goes well Matthew could be home by the end of next week. Now we all know that nothing ever happens on anyone�s timetable except Matthew�s. But it does seem as though a new chapter in his life & recovery is coming soon. When he does come home it will be on a cocktail of medicines that will cost us approximately $2000 a month while he is weaned down. Obviously we can�t sustain that for very long so pray that he can be comforted by us while he comes down from these drugs.
 

Big Brother Casey has come to visit every day. 

Matthew has a new "Froggy Friend" to keep him company. Special thanks to Ro & JoNita Wiliiams for the gift.
 

Matthew and Mommy watching football

As we all know Matthew sets the time table for things around here. He spiked a fever on Saturday and succeeded in postponing his surgery until the end of the week. The nurses reported that they were holding him over night when he made his usual gagging noise. After that he became inconsolable. They think he may have had acid reflux and this could explain why he has been so fussy. If this is true the need for his Fundal Plication becomes more apparent. Hopefully by the end of the week his cultures will come back negative and he can have his surgery.
 

As we were driving home tonight I was trying to think of the words to answer the frequently asked question, "How are you and Terri holding up?" When I opened up my E-mail I received a great gift from Terri who always speaks from the heart. Here is a more perfect answer to that question than any my analytical mind could ever come up with:

Hi everyone...

I believe in the power of prayer ... and I believe with all my heart that the prayers for Matthew did keep him from needing a trach and a ventilator...and I believe that prayer is what got us home last week ... and that is what is keeping him so strong and doing well ..... We need prayers...

I am asking again for continued prayers ... that Matthew will be approved for SSI and Medicaid for the Disabled ..... Mike & I ran out of insurance at $250,000 (which was months ago.... The insurance company was in error for the past several months telling us that we had a 2 million cap .... we found by a co worker of Mikes, that Metro had changed the policy on Jan. 2005 that babies born w/ congenital defects would only be insured up to $250,000) and now Matthew does not have coverage ... THIS IS A NIGHTMARE FOR US as you can just imagine.
We simply cannot pay these mounds of medical bills which are expected to be @ 5 million billed already.... Matthew is going on his 5th month in the hospital... Had we known back in May our coverage was only $250,000 ~ we most certainly would have applied for aid back then... instead of scrambling in September.

We have applied for aid beginning of Sept. ... but I was told by Social Security that it could take a minimum of 120 working days to find out if we are approved or not approved.... If he is not approved... he will not be eligible for Medicaid for the disabled.....If he is not approved ... we will have to appeal ... and it could go on and on..... I am begging God that he gets approved...

Once he gets home ... we will need to get prescriptions for him that could cost hundreds of dollars a month ... and he is going to have to see his pediatrician, cardiologists, pulmonologists, gastro internists on a regular basis ... etc.... we will have to pay that out of pocket... on our own ... and we simply will not be able to cover these types of medical bills....
Mike and I are so fearful ... we have no where to turn ... we don't know what we can do... All we can do is to apply... I have heard that "Mike makes too much money for Medicaid" and yes ... we do make more than the $32,000 that is allowed for 3 people to qualify for Medicaid...
We are an average middle class working family ... but at his salary as a police officer we can't pay these bills...
As Matthew will need care for the rest of his life...
And will need several more valve replacements for the rest of his life...
All this without health insurance (because we simply ran out!)

All we wanted was to have a baby and have a family... and this is what is happening to us.... Not only are we scared out of our minds for the health and well being of our precious little baby ... whom God has blessed us with....
We are scared out of our minds as to how we are going to care for him w/o insurance....

Does anyone have any suggestions....?? I was told by the hospital social worker that we have done all we can and to sit back and wait...
It is hard to sit and wait when we have no idea what is going to happen... I feel desperate......

Thank you for listening... and helping us to figure out what we can do.

Terri, Mike & Matthew

 

Notice Nurse Debbie's perfect color coordination

This is an excerpt from Aunt Kim's Friday Mattigram:

Daddy had an funny visit with Matthew last evening. Every night after Mike finishes work, he goes to sit with his son. It must have been after 11:00 p.m. when Mike was standing in Matthew's dark room gazing down at his son. Just then, Matthew's night nurse, Debbie, walked in the room and said to Mike, "I hope you're the Dad and not some scary man in his room." After that was cleared up, she left the room only to return shortly thereafter and scold Mike not to wake up Matthew. I love that.

Oh but that's not all... Apparently, Debbie had dressed Matthew in a darling little green outfit and then placed his stuffed animals (all color coordinated) around sleeping Matthew. When Ron, the respiratory therapist, came in to draw a blood gas he moved one of the larger stuffed animals in order to access the line. After Ron left, Mike placed another smaller stuffed animal next to Matthew. However, the color coordination was now messed up. So significant was this infraction that Debbie reported this at shift change to the on coming nurse, Becky, who of course ribbed Mike about it tonight. We all had a good laugh.

 

The infamous "un-color-coordinated" Pelican 

In preparation for his surgery on Tuesday, Matthew had an �Upper GI� done yesterday to map out his digestive tract. When they put the Barium through his feeding tube Matthew refluxed it and had to have his mouth suctioned. After that the X-ray Tech came back in every 15 minutes to get a picture of the path the Barium was taking through his body.
 

Matthew has been much less agitated during the later part of this week. Terri says the only time he gets fussy is when he wants us to hold him. I witnessed this myself after work yesterday. When I walked in Matthew�s room he was crying. I picked him up and sat with him in a rocking chair. He was asleep in no time at all. We try to keep him calm so he wont burn up as many calories.