Grandma Sue came to visit and stayed all afternoon. She got to hold Matthew, rock him to sleep, and sing nursery rhymes to him.
 

My sister, Lori, gave Matthew this sign. I think it�s well said. Raji agreed and hung it from Matthew�s bed post today.
 

Two Months ago today Matthew was in trouble. His doctors in Las Vegas had to intubate him and said they could no longer medically mange him. His Co2 levels had spiked to 108. His kidneys showed signs of calcium buildup from all the Lasix (diuretic). Matthew needed his heart surgery and much sooner than the scheduled August 24th date. What a difference two months makes. Now his heart is fixed and his lungs look better every day. He is tolerating the feeds going into his stomach so more volume is being added. Before each subsequent feeding, Raji performs a �draw back� test where she attempts to draw back any residual formula from his stomach with an empty syringe. A minimal amount proves that he is digesting the rest. Matthew enjoyed his second day in a row of weight gain. He is just under 8lbs. Margo the singing Respiratory Therapist called Matthew�s room on her day off just to see how he was doing. Dr. Mayman, the best Cardiologist in Nevada, called to check in as well. He said that he would like to see us back at Sunrise Hospital in Las Vegas. That way we could transition Matthew to home life locally. When I think about going home I look over to Matthew�s bed and smile for all the fun and love he has to look forward to. I also can�t help but notice the present situation he finds himself in. You see, Raji and Tracey are at his bedside coaxing him to smile, then cheering when he does so. Rod Stewart said it best, �Some guys have all the fun.�
 

Matthew had a mixed day today. First thing this morning the ear nose and throat doctors came in with a bronchoscope and looked at his vocal chords. The right side was fine but they saw no movement in the left side. This explains why he can�t make much noise when he cries. Another concern is his ability to bottle/breast feed. You see, the vocal chords not only produce sound, they also protect his airway from fluids �going down the wrong pipe� when he swallows. In fact, they performed a test with barium today and when he swallowed some it also went down into his lungs. �What could cause this?� you are probably asking. Matthew had been intubated for months as most of you are aware. The vocal chords could just be irritated from that fact. Also, during surgery, the nerve that controls the vocal chords and is near the heart could have been bumped or �stunned� as Dr. Conrad calls it. These first two explanations will heel themselves over time. Another possibility, though unlikely, is that the nerve was severed during surgery and will never grow back. Do you remember �Froggy� from the �Little Rascals�? For the immediate time this simply means that Matthew can�t drink from a bottle like most babies because of the risk that he will aspirate milk into his lungs. A �mixed day� implies more than one ingredient�So let�s talk about the good news. According to Sandy, our Nurse Practitioner, Matthew �set a new personal record for the best lung X-ray ever.� He remains at room air (no added oxygen). His feeding tube was drawn back from his intestine to his stomach so he can digest normally. All of these are important milestones for him on the path to going home.
 

Matthew Medical Fund

Terri and I are blessed with wonderful friends and family. Many of you have asked us to start an account for Matthew that you could donate to for his medical expenses. We have been humbled by the requests but were hesitant to ask for help as all of you would surely be. However, due to some gentle prodding, we went ahead and opened an account at Wells Fargo. I want to stress that this is independent of the Foundation we are working on and thus, is not necessarily tax deductible. This is strictly for Matthew and his medical bills. Terri tells me that you can go to any Wells Fargo Bank branch and make a donation in the name of Matthew King (Terri has the account number if you need it). I wanted to say thank you to Shawn and Aracely for all their help and information.
 

More visitors than the President and the God Father combined

I saw a news report once on a day in the life of Donald Rumsfeld. I was amazed that he could fit that many meetings at different offices in to one day. I also remember the scenes in the God Father where countless people would come to his office each day to ask for favors. But today I witnessed true time management. As Matthew sat on his throne-like high bed, he was visited by countless medical professionals all wanting something from him. Like Don Corleone himself, Matthew calmly handed out whatever favors were asked of him. Raji, his loving and ever-vigilant nurse, took out the drainage tube from his stomach. Dr. Wright wants more calories and volume added to his feeds. Dr. Conrad came by and wants him to undergo a �Sleep Ox� study where they�ll track his sleep patterns as they relate to oxygen saturation levels. Ashley, our favorite Social Worker, stopped by to smile over him and marvel at his progress. Chris, his physical therapist, came by and evaluated Matthew�s visual tracking and arm range-of-motion. Dr. Aziz stopped by to remove a few stitches from Matthew�s chest. Erin, his occupational therapist, came by to introduce herself and give me a hand out on oral stimulation to prepare him for bottle/breast feeding. Sandy, our famously optimistic Nurse Practitioner, stopped by, looked at him and his chart, and said, �Tell Terri I�m Pleased!� Reverend Carolyn, back from the Grand Tetons, paid a visit to pray for Matthew and for Terri while she�s away. Vicki, his Respiratory Therapist, gave him his breathing treatments. A doctor from the Ear Nose and Throat service came by for an initial assessment before they check his vocal chords tomorrow morning. Josh, one of the CVICU attending physicians, stopped by to look at the status of Matthew�s IJ line in his neck. And finally, as the evening drew to a close, Dr. Amir came by to replace the stitch holding the IJ line. Maybe he should be transitioned into a CEO�s chair rather than transitioned back home.
 

You again? 

Dart lending Matthew a nose 

Yes, this is my third outfit today!

I also spoke with Dr. Carol Conrad his Pulmonologist today. She smiled and said, �His [blood] gases look really good! How�d he do that?� she seems very happy with his progress. Matthew seems to be getting the faintest bit of voice back when he cries. Dr. Conrad told me she will suggest having an Ear Nose & Throat doctor look at his vocal chords through a Bronchoscope.
 

�Transitional� Plan in Motion

Dr. Gail Wright�s plan to transition Matthew�s medicines, treatments, and feedings into more of a home-management mode has begun. Today they decreased his Methadone, changed one of his diuretics from intravenous to oral, stopped his Tobramiasin (Sp?) breath treatment, decreased the frequency of another to once a day, and lessened his respiratory treatments from 8 to 4 a day. 4 treatments are much more manageable for parents to complete. Taking diuretics orally means no shots or IV lines at home. And, of course, weaning him off of any possible other medicines will always help. Matthew had his ultrasound done on his kidneys this afternoon. They will survey the effects the diuretics have had and how much calcium had deposited there. I asked Dr. Wright about the Broviack line and she said she will weigh out the risk vs. reward and get back to me. The access would be nice but he has to be re-intubated during the procedure.
 

Matthew in his race car outfit

Last night I got to hold Matthew before his evening respiratory treatment. With the Boppy in place we sat down for our next adventure. I read to him from H.W. Mabie�s book �Heroes Every Child Should Know�. We ventured off to the mythical world of King Arthur and his Knights of the Round Table. While Arthur and his men laid waste to the evil Mordred, Matthew laid waste to his diaper. No Hirchsprung�s disease for my boy! I changed his diaper and selected the famous 4th of July outfit for him to sleep in. As you can see he is still too small for it. Not to worry, the input causing his output will solve the size dilemma soon. 

Auntie Kim with Matthew

Kim was quite excited today when she got to hold our little man before she left for the airport. My spies report to me that she continues to corrupt Matthew with promises of soda, cookies, and late night movies.
 

Matthew the Pharaoh

Matthew looked like a proud, albeit sleepy, Egyptian Pharaoh today in his bouncy chair. As his highness slumbered, Terri and I spoke with Dr. Wright and Dr. Conrad. They both had to work on a holiday but would likely be roaming the halls regardless due to their dedication. They are in agreement that the plan of action is to start weaning Matthew down on any settings possible, decrease his respiratory treatments from 8 to 4 a day (the number Mommy & Daddy would be doing at home), pull back his feeding tube to his stomach instead of intestines, and transition to oral medication where possible. This will all happen at a cautiously slow pace with the hopes of getting him ready for life at home. I must stress that these transitions will be phased in over weeks instead of days.
 

Just us Boys

Today Terri went home for the week with her sister Kim. Nine weeks away from home brings issues that must be addressed. While I can�t begin to equal that loving motherly way Terri has I will try to make up for it with lots of man-to-man time (Can�t you just hear the theme from �Courtship of Eddie�s Father� in the background?).
 

New to our Blog?

If you are new to the Blog and would like a brief history to bring you up to date click on August archives and go to the August 20th entry entitled �Background History�.
 

Daddy Holding Matthew

I got to hold Matthew today. I sang him a Dire Straits song called �Why Worry�. If you read the lyrics I think you�ll agree they�re perfect. I used to find solace in that song when it came out in the 80�s and now it has a new meaning when I sing it to my son. Matthew and I must be hot blooded because he always gets hot and agitated after I�ve held him for awhile. Today his temperature shot up to 101�F and gave us all a scare. Soon after I put him back to bed he cooled right down to normal. Dr. Wright said Matthew was doing so good that she was prescribing �no changes� today. She said his lung X-rays looked good but there was still some areas that were partially collapsed. Margo, his Respiratory Therapist, came in and worked him over again today. I have video on my phone of his breathing treatments that is quite humorous. I will work on converting it to a format we all can enjoy. Grandma Sue came to visit today. Matthew is wearing his big boy clothes now so she got to see him in his aquamarine little �Suit-D-Do�. Terri brought over a bag of baby clothes we had at the RV. Matthew has outgrown several of them but we should still have cute pictures to post in the coming days. After we left the hospital we went back to the RV and ate the Chinese chicken salad that Cousin Stacey made for us. It was just delicious. Thank you again Stacey for being so sweet. Pray I don�t make myself sick again on your cookies! Like Cassidy and Jenni, I had �oatmeal� for breakfast this morning.
 

Matthew in his hospital bed

This is an artist�s rendition of Matthew in his hospital bed. It was drawn, sight unseen, by our friend Lenora�s daughter Natalie. Notice the attention to detail on Matthew�s chest. Look out Dr. Aziz�you�ve got competition! We love you too Natalie. Thank you for the picture.
 

Matthew�s Blessing Blanket

This Blanket was given to Matthew by Jeff & Cherene Zingg. Their baby had a similar heart defect and they were at the hospital for a conduit change. The blanket was made by Jeff�s Mom who owned a quilting business. When Dr. Gabriel Amir, one of Matthew�s heart surgeons, saw the blanket he joked in his gruff Israeli accent, �It should say �Bless your lungs Matthew��. This was the first time we had seen through that tough exterior.
 

Margo Giving Matthew his Treatment

Margo, Matthew�s Respiratory Therapist, worked him over today. She gave him medicines to clear out his lungs, �thumped him� with a rubber cup to break up any mucous, all the while singing �Under the Boardwalk� to him. He seemed to enjoy himself but occasionally looked at me for reassurance that Margo wasn�t crazy. I winked at him, joined in on the serenade, and he took it all in stride.

Dr. Gail Wright came in to talk with us about Matthew�s progress. I asked her about some of the stitches still in his chest and she said she would have Dr. Aziz look at them to see if they could come out. Dr. Ekpoudia in Las Vegas had shown me images of the calcium building up in Matthew�s Kidney�s from the Lasixs (a diuretic) way back on July 9th. He said there was another diuretic, Diuril (sp?), which counteracted the buildup. Dr. Wright told me she would order an ultrasound to see how his kidneys were doing (If you are out there Epay, I haven�t forgotten). Dr. Wright said it wouldn�t be unreasonable to plan for Matthew�s homecoming by the end of September. Any time frame is completely dependant on Matthew�s progress. She also described a possible scenario where Matthew is flown back to Sunrise Hospital in Las Vegas. That way, all our local doctors would know his day to day condition and could determine when he is ready to come home. She was thrilled with the difference 2 weeks had made for Matthew.

 

Family News

My Cousin Stacey, Auntie Donella & Uncle Jim, and my Auntie Gerrie & Uncle George all came to visit us at the hospital today. They graciously lured us away to Cheesecake Factory and treated us to lunch. I�m sorry to say we tried to get a picture for the Blog but experienced technical difficulties. Auntie Kim is enjoying her visit. She is attempting to condense a week long visit at Matthew�s bedside into 3 days and Terri is only too happy to oblige. Also, we received a call from Sandra Martinez this morning. Sandra is a nurse in Las Vegas and was working the day Matthew was born. She hadn�t heard any news about Matthew for awhile and said she just couldn�t stand it anymore. It was great to hear from her. I told her we will plan a big barbeque at the house for Matthew�s doctors and nurses when Matthew comes home.
 

Early this morning Terri Called Rhoda, Matthew�s nurse, to see how he faired overnight. Rhoda said that Matthew had been put back on CPAP due to his Co2 levels rising. We were so disappointed. After going to the gym I walked in to the CVICU to sit with Matthew while Terri put her makeup on at the RV. When Connie, one of Matthew�s Respiratory Therapists saw me she smiled and said he was doing good. I lamented about the CPAP and she told me he had already been put back on Vapotherm. Apparently the rise in his carbon dioxide was caused by his electrolytes being out of balance. The diuretics caused him to urinate a lot which flushed out his electrolytes. This fact, not his breathing, caused his body to hold on to Co2. I may sound like an expert but I�m merely a parrot repeating what I�ve heard. So Matthew spent the day on Vapotherm and was very content. In fact the only time he woke up today was to flirt with and smile at Raji, one of his primary nurses. She wears a red shirt every week to lure his attention away from Mommy. Kniki will be his nurse tomorrow so she and Auntie Kim will be competing for his undivided attention.
 

By the way, here is a picture of Marci, Paul, Alli, and Kaylee who have come to visit twice from Reno. They are dear friends of ours.
 

First Day on Vapotherm

After much lobbying by Terri and me the hospital made Matthew their first test case with Vapotherm. This is a very gentle breathing machine that uses a simple clear plastic cannula to feed his nasal passages heated/humidified air. Since it was a new device, all the respiratory therapists were present for the demonstration. Matthew became very alert so I stood by him while he was transitioned. While the doctors and RT�s looked on to test his reactions, Matthew gave out a big lion�s yawn and took it all in stride. He looked at me as if to ask, �what�s with all the grown-ups Dad, is it my Birthday already?�
 

Dr. Conrad listens to Matthew�s lungs

Dr. Carol Conrad was with Matthew quite awhile today. She said that Matthew�s lungs were improving better that anyone expected. Terri says she is the premier, bubble gum chewin�, short stop playin�, Pulmonologist. She came back soon after Matthew was switched to Vapotherm and suggested they turn his setting down since he was handling it so well. She said she was happy to see him on Vapotherm but would miss the �Homie-hat� he wore on CPAP.
 

First thing this morning we were told that Matthew had a great night. The pressure settings on his CPAP were turned down overnight from 10 to 7 (no significance for you and me other than lower is better) and his oxygen settings were down to 45% (21% is room air that you and I breath). There is even talk of moving him out of the Intensive Care Unit and upstairs to a more intermediate care wing of the hospital next Tuesday.