Matthew with his new breathing apparatus.

There was a great comic strip called Calvin and Hobbes. Calvin was a young, precoscious boy. One Sunday Calvin had a bubble blower. He pulls out the wand, blows a bubble which quickly pops, then looks toward the reader unimpressed and says, �Wee�. That is what it was like today when Matthew came off BiPAP and switched to CPAP. Very Uneventful. Terri and I were happy with the absence of drama. His new apparatus may still look like something out of �A Clockwork Orange� but it opens his whole face to the air and thus, is much better for his skin. An ear nose and throat doctor came in to examine the black thrush spot on the roof of his mouth. He removed the scab with a pair of tweezers so that it wouldn�t fall off and choke Matthew. Vicky, the senior Respiratory Therapist, gave Matthew his back massage treatment today and suctioned out of big piece of goop from his mouth afterwards. She said that the CPAP blows heated & humidified air into his nasal passages and may help to break up more mucous in his airways.
While removing the Spam from our Blog this afternoon at Starbucks a Middle Eastern man named Onjon noticed the hospital button on my shirt and introduced himself. He told me that his wife, Bev, found out 3 years ago during her pregnancy that she had an autoimmune disease. Her body was allergic to a hormone produced during pregnancy. Their son, Arion, was born three months premature and was in the hospital for three months as a result. We commiserated for awhile and then he told me to tell Terri that everything will be OK. He said to take home every machine with a bell or whistle if it makes Terri feel better because her emotional state may be very fragile. When he got up to leave he patted me on the back and said it would all work out. In a 20 minute conversation he made it clear, man to man, that he knew exactly what I was going through. I felt completely recharged.
 

Sorry about the "Comment Spam". I've changed a setting so that anyone can still leave a comment. the only difference is that you will be prompted to type in some letters shown on the screen. It is very simple and prevent automated posting because a human being must make the comment. I really want to let people comment without being a member if they prefer. Therefore, we'll try this and then make other changes if the Spam continues. Terri and I read your comments nightly and just love them. Thank you all for your support. We are still at the hospital so pictures and the daily recap will come tonight.

Tomorrow is a big day!

If all goes well overnight, Matthew will be taken off the mask and put on Nasal CPAP tomorrow morning after doctor�s rounds. Nasal CPAP is very similar to BiPAP but he will have two large tubes coming into his nose rather than the triangular cuff that is strapped to his face now. It will only be slightly more comfortable for Matthew but we won�t have to worry as much about tissue breakdown on his face. Dr. Jim Andrus, whom we also really like, just got back from a 2 week vacation to Cabo with his family. He told us that Matthew will likely go home with a nasal cannula with oxygen flow. This is similar to the innocuous line around his face that he had in Las Vegas. He told us that he wanted to prepare us for that possibility. Honestly, we had to laugh. A little clear plastic line compared to a Tracheostomy won�t take much preparation to accept. He also said that Matthew may go home with a feeding tube inserted through his abdomen into his stomach for feeding until he gets bigger. This is called a G-tube. Dr. Andrus says the less work he has to do getting nutrition into his body (like breast/bottle feeding) the more he can use to grow stronger, lungs and all. On our way out of the hospital tonight we stopped and talked to Eric, a father we had seen several times over the last week. He told us that his first son, Elston, was born with a pulmonary artery and an aorta that were fused together. Three years ago he underwent a similar surgery to Matthew�s and is now back for a conduit change. He had a three month old baby boy with him that is his second son. He said his wife was too scared at first to even think of having another child after all that Elston went through. But, like us, they went through genetic testing to confirm that Elston�s defect was a fluke. They had another baby who is healthy as the day is long and said they are so glad they did. Terri and I walked away very encouraged about the future.
 

Matthew on a break from the mask. 

Terri heard that one of the heart surgeons, Dr. Aziz, was an artist. He agreed to draw her a picture of what Matthew�s heart looks like now based on his understanding of what Dr. Hanley did in surgery. The manufactured artery and hood are in the center of the drawing. I hope you all can get a sense of how amazing this drawing is!
 

One of our dear friends, Shawn, works for a bank in Las Vegas. She called me today with information on starting a �Matthew King medical fund� account. We have been humbled by all the requests for this so we are obliging those who want to help. Terri will be going home next week to take care of some things back home and will work on getting an account established. While talking with Shawn she told me her daughter Lizzy commented that Terri still looks great in her pictures even with all she has been through.
 

Raji and Jerry tend to Matthew

We always brace ourselves before walking into Matthew�s room each morning. We have to prepare mentally for the common dose of bad news. Today we walked in and Raji told us that Matthew�s Co2 levels had crept dangerously high in to the 60�s (40-59 is the required level for him to stay extubated). The medical staff responded by raising the settings on Matthew�s BiPAP machine. Even so Sandy the Nurse Practitioner was thrilled to come back from her weekend off to find him still on the BiPAP. While I was wetting Matthew�s tongue with a sponge on a stick, I noticed a dark spot on the roof of his mouth that looked like black spinach. I figured either Grandma Wright stopped by with bread and Pesto, or it was something medical. Raji and Sandy looked at it and immediately recognized it as Thrush. That is not an 80�s rock band from Canada. It is a very common ailment for kids with nebulizers or inhalers. Raji started treating him with a �swish and swallow� medicine for yeast infections. 

What is God�s purpose?

I haven�t been questioning him, just wondering what he has been trying to tell me. In our darkest hours Terri has often asked me why God was doing this to us. Why were we being tested this way? I have looked back on my life and the mistakes I�ve made and asked God if the sins of the father are now the sins of the son. Is this Punishment or preparation? Finally, last week, I decided that if we start a foundation to help others who find themselves in our situation it would help me answer the questions in my mind. So with that question out of the way I can move on to the next question we had for God. Why, at this very moment, would you bring the Carter�s sad story to our attention? This was an easy one to answer. Terri and I have anguished over the thought of Matthew needing a tracheostomy to go home. We have lamented over the impact his breathing machine might have on our family life. I think God just reminded us that, regardless of the breathing apparatus, the Carters would trade places in a minute to have the joy of their son at home.
 

The Carter family- Josh, Kristen, and little Elijah are in our prayers tonight. I have called and left a message for them and hope to speak to them soon. the similarities are uncanny. I beg all of you please refrain from calling Terri regarding the Carter's posting for a few days until I can gently make her aware of their Story. Please refer to the comment below for details. God bless.

Grandma Sue got to hold Matthew for the first time today. She was nervous because he was crying but I showed her a trick. I wrapped his little hand around her finger so he could squeeze it and it calmed him right down. That�s a far cry from talking to him about why there are naughty billboards in Las Vegas, but I still felt like I might handle fatherhood just fine. Jerry, one of our favorite respiratory therapists, was talking with my Mom today and she rhetorically asked where all these poor babies came from. He gave a wry smile and teased, �From mommies�. Jerry is great. He didn�t like the way the mask was blowing in Matthew�s eyes so he cut out a little seal to go around the gel cushion. Talk about extra effort! Rio Rita was his nurse today and she had a very reassuring effect on Terri. They talked about her upcoming wedding and we reminisced on ours as well. Pray your child never gets sick, and then pray you can come to Stanford if they do.
 

The difference in a month

One month ago today Matthew had his surgery. Today he is still healing and still improving. His settings on the BiPAP machine were turned down again today. Then, after an afternoon X-ray, Dr. Swati came in and announced that he was looking good and they were going down on his settings again. Dr. Kache was a bit more sobering when I talked with her. She said he was doing well and that he might start getting 30 minute breaks from the BiPAP in a couple days. She did allude to the possibility of him staying on the mask for two weeks. Yikes! 

Terri and I both got to hold Matthew today. The first thing you notice is his mask blows air directly in your face from two holes that help keep the pressure regulated. I wouldn�t dare complain because I�ll bet my boy would trade places with me. Talk about keeping perspective. I�ll tell you though, I don�t know why dogs love putting their noses out the car window.
 

A Good Omen

When we walked in this morning Matthew�s mask was off while they massaged his cheeks. He�ll get a short reprieve from the mask each day so that the skin under it won�t break down. Then we came back from lunch today and Matthew�s respirator machine was gone. After he was switched to the BIPAP machine yesterday, they kept the respirator right next to the bed just in case he crashed. But now it�s gone. That�s not to say it can�t be brought back but at least it�s not handy. That was a good Omen.  

Here is a much better link to the Cuppycake Song... Type in http://members.aol.com/ossie/aww.html
Thanks for the update Steve and Sandy Howard!
 

Help with Foundation Names

We all love the name Whomagoo. But can you honestly hear President Bush, Governor Guinn, Senator Ensign, or anyone else for that matter, say in a public forum, “…and that’s why I am proud to support the Whomagoo Foundation?” I was thinking maybe we should call it the “Family Surety Foundation” It would kind of be a play on the word insurance. Please post thoughts or suggestions. You can post anonymous now if you are afraid to hurt my feelers (Terri speak for feelings).

The Mind of a Hospital Parent

Terri and I have surpassed the guilt of thinking we did something to cause Matthew’s condition. Genetic testing and assurances from doctors have put those feelings to rest. I took Terri out today to the Cheesecake Factory to sedate ourselves with the calming influence of chocolate and cheesecake. As I took my second or third bite (who really counts when you are eating cheesecake?) I began to feel guilty that I was, even for a moment, enjoying a diversion from grim reality while my son was back at the hospital experiencing that same reality. Guilt is strange.
When we exit Matthew’s isolation room there is a family just outside the door. I try to always smile and say hello to everyone around me. I often see the mother and father studying me. I think to myself, “Am I smiling or laughing too much for their taste or are they thinking I’m an inspiration?” have they seen us walk from Matthew’s room crying? Do they think we are much worse off than they are because Matthew is isolated? Their daughter has the same type of chest bandage that Matthew had so I’ll talk to them and see if we have something else in common.

A quick glimpse without any tape or tubes! 

Once Bitten Twice Shy�

Lyrics from a great rock and roll song, and words to live by for Terri and me. Matthew had his endotracheal tube removed from his throat today and was successfully switched to the BiPAP mask. This picture speaks a thousand words. No one could be comfortable with this device on their face and Matthew is no exception. He is miserable. The mask is like the parasite from the movie Alien. It is strapped to his face and forces air into his nasal passage. He hasn�t opened his eyes since they put it on him. I thought it was from fear but in actuality it�s from the overpressure blowing out of the mask into his eyes. They are going to put some gooey drops in his eyes to keep them from drying out. When he is awake he cries (no sound yet). When he sleeps it is only because they sedated him. As miserable of a picture as I have painted, this is still better than the breathing tube. He is working harder, getting stronger, doesn�t need suctioning, and is avoiding the trach. I say once bitten twice shy because Matthew could crash at any moment. We have been bitten with bad news too many times to throw caution to the wind now.
 

Matthew, Terri, and I were so touched by the responses to our foundation idea that we just had to write a quick note to say thank you. You are all so generous for reaching out to friends and contacts for us. We love and miss you all. 

Here is the Hannibal Lector mask. It is actually called a BIPAP. 

Not quite Rocky�

Today Matthew was in training. In preparation for tomorrow he underwent a sprint. That�s when the respiratory therapists lower his ventilator settings to make his lungs work harder. They mimicked the settings of the CPAP he will be transitioned to tomorrow morning. Matthew�s oxygen and carbon dioxide levels stayed where they belong so it looks like it will be a go for extubation. Terri and I were shown the mask that he will be wearing after they take out his breathing tube. It reminded me of Hannibal Lector. While it won�t be flattering, the mask will be less irritating to his throat. Terri and I had been told numerous times by several trusted doctors that they were concerned about Matthew�s lungs when it came time to do his surgery. We naively thought they meant during his surgery. We never thought he would have such serious complications after his surgery. Our nurse Kniki (thank God for her and all the rest) said it was better for us to digest small bits of reality than to have faced the totality of the circumstances all at once.
 

I had an epiphany today�

Our family is blessed with good health insurance from my Police Department. The only hitch is a $2 million lifetime cap per family member. That�s right, after our insurance pays out $2 Million worth of Matthew�s daunting medical bills he will no longer be covered. As we all know his treatment will not end with this surgery and hospital stay. He will go home highly susceptible to respiratory infections. He will need routine visits to Dr. Mayman, the greatest Cardiologist in all of Nevada. Since Matthew�s conduit (or valve in his heart) is from a cadaver it will not grow with his body and will need to be replaced throughout his life. Plus, boys will be boys and with that comes the usual visits to the doctor. I don�t like to be pessimistic but we could become one of those families on 20/20 (or some other investigative journalism show) who have an awful situation that rivets you to the TV and makes you feel miserable on a Sunday night. How many thousands of other families are in a similar situation? We shouldn�t have to worry about our future when we have so much to worry about in the present. So I came up with an idea�

The Whomagoo Foundation

Mission Statement:

1. Give grants to families for a child�s medical expenses when they surpass their health insurance cap.
2. Advocate raising of the lifetime cap for newborns to the insurance industry and lobby Congress.
3. Publish a pediatric web site for parents to search for and share information on their child�s condition.

Think about what a noble effort that would be. The majority of employees for major corporations are middle class families with health care. Corporations would be proud to sponsor a foundation that benefits their labor market. Tax deductable donations to a non-profit organizations is good PR for big corporations. I can tell you from personal experience how often Terri and I fret about our insurance cap. It would be such a relief for families to know there is help out there.

So, the next step is to find out how to start a foundation. Any suggestions?
 

All in all a good day

Matthew�s original surgery date would have been today. Thank God he is so much farther along. Matthew had an IJ (internal Jugular) line put in his neck today. It should last around five days. That is long enough for his blood cultures to come back negative and for him to get a Broviack line surgically installed. Swatii, his doctor, got the line in on the first try. Raji, his loving nurse, got a blood sample from it with ease. Also, he tipped the scales this morning at 8 1/3lbs. Tomorrow he will hopefully rest up for extubation on Friday. Terri was in a darkly humorous mood today. She said that on Friday Matthew will either �make it or Trach it�.
 

A Telling Week?

Terri and I just spoke with Dr. Sara Kache who is this week�s CVICU attendee. Matthew is battling three different bacterial infections with a host of different antibiotics. Because he is on his sixth IV since Saturday, access has taken on a new urgency. Therefore, tomorrow they will plan on surgically implanting the Broviack line unless his blood cultures look bad. If not a Broviack, they will install a kind of hybrid line; not quite a Broviack but more permanent than a PIC line. It is ironic that we are hoping for another surgery but a long term access point is vital.
Even more serious was our discussion about extibating Matthew. Dr. Kache still intends on weaning him off the ventilator throughout the week with the hope of removing the breathing tube this Friday around 10:30-11am. Once off the ventilator they will immediately switch him to �CPAP� which forces oxygen into his nasal cavity through a cannula. If he can�t handle the CPAP he will have �failed extibation�. At that point he will most likely be scheduled for and receive a tracheostomy. This is shaping up to be a very telling week. 

Restarting the Clock

Matthew has always kept his own timetable. He was born two months early, transported to Stanford six weeks prior to his scheduled surgery date, and made it clear to the doctors here a few weeks ago that he wasn�t ready to be extibated from his ventilator. Today was one more example of this trend. Matthew needs a surgically implanted Broviack line from which the nurses can draw blood and administer medications. A typical IV line will last you or I approximately 48 hours. Matthew�s IV�s, however, routinely fail after 12-24 hours. In fact, he has had nearly 20 lines come and go from his little 7 pound body at Stanford alone. Five were put into the history books just this weekend. He is actually running out of veins to access. Terri and I walked into the CVICU (cardiovascular intensive care unit) this morning expecting him to be scheduled for a short surgery. Instead, Matthew was running another fever over 101 degrees. Every time he spikes a fever the clock effectively resets a 48 hour countdown. Apparently a child should be without fever for that period of time before doctors can be sure that a Broviack line will not be infected by Staph. Faith and patience be with us.
 

Daddy�s best friend Johnny from high school came to visit us with his family. There was Cheryl, his wife, their one month old daughter Alysa, and John & Mary his parents.

 

Grandma Sue came by for her Birthday present visit. 

Today was a fun day. My fever has gone away so Daddy got to hold me after church. We sat in a rocking chair fit for two Kings. Daddy read a book to me about big construction and fire trucks. The book was a gift from Grandma Sue. Today was her Birthday by the way. Daddy told me she was sweet sixteen. Happy Birthday Grandma!  

From Matthew's Daddy: There are hills, valleys, and plateaus along the road to Matthew's recovery. Today we walked on the plateau. He had a fever and seemed to be laboring to breathe. The nurses took cultures of blood, urine, and mucous to test. The doctors are curious what could cause a fever while he is already on Antibiodics. This will almost certainly delay the placement of his Broviack (sp?) line that he needs for access. Terri is worried that we are on the eve of another setback. Faith and patience be with us.

This is my mommy, Terri. She is beautiful. I love it when she sings to me. My favorite song is the Cuppycake song. To hear it go to... www.cuppycake.com . You will just love it. My mommy and daddy sang it to me yesterday and my friend Ashley the Social Worker cried.

Background History

I thought it would be appropriate to give a brief history to those of you who have joined the Blog without having had the benefit of Grandma Wright’s famous daily “Nannigrams”. My wife, Terri, and I did a considerable amount of family planning before deciding to have children. During Terri’s pregnancy we read books on what to expect and how to prepare, made routine visits to our OB/GYN, ate healthier than ever, and even gave up caffeine. Even with all our planning and precautions, On May 10th 2005, my son Matthew Michael King was born premature at 32 weeks. Four days later he was diagnosed with a congenital heart defect. In the eighth week of gestation Matthew’s heart developed without a pulmonary artery. Like wildlife in the Las Vegas desert, life finds a way and with Matthew it was no different. He developed several collaterals connecting his heart to his lungs to supply oxygenated blood. To sustain his life however, our doctors knew he would need a very specialized heart surgery. Las Vegas Cardiologist Dr. Gary Mayman told Terri and me that Matthew would need open heart surgery at Stanford Medical Center. On July 28th Matthew underwent a nine hour surgery to repair his walnut sized heart. The surgery, called “Unifocilization”, was developed and performed by Dr. Frank L. Hanley. As I write you this posting, Matthew continues his recovery at UC Stanford. Now that his heart has been repaired, his lungs are the primary concern. Due to his premature birth, an overflow of blood into his lungs, the trauma from open heart surgery, and living on a respirator, Matthew’s lungs are a mess. Terri and I have been here at his bedside since the day he was born. Every day we try to update our friends and family via this Blog and Grandma Wright’s Nannigram vigil. Each day God continues to bless us with improvement for Matthew. The healing is slow but mostly steady.

Matthew was born a young, bright star into the new millenium. It seems fitting that his daily updates should be on a "Blog", the newest, brightest form of communication.