Wednesday, November 30, 2005

Matthew had a very busy day today. He got a bath and went to Dr. Dezenburg's office for a new G-Tube.

After his bath, we bundled Matthew in a warm towel.

Matthew arrives at Dr. Dezenburg's office to get his new G-Tube installed.

Matthew says, "Farewell" to his old G-Tube.

Nurse Aubrey installs Matthew's new button.

Here is a close-up of Matthew's new G-tube. There is a port on the side where we fill the internal balloon with water to anchor the button in place.

Matthew was such a trooper. He barely cried at all when his new "Mickey Button" was installed. I have to complement Terri as well. She was taught by Nurse Aubrey to install the button herself and didn't even get weak in the knees.

Matthew and Mommy pose with Nurse Aubrey after his new G-Tube is installed.

Monday, November 28, 2005

Matthew enjoying a little swing time.

Our Cardiologist, Dr. Mayman, told us today that Matthew needs another surgery. His pulmonary artery has constricted to dangerous levels and must be replaced. The constriction is a result of the scarring and sutures healing from his original surgery. If you look at this drawing you will see Dr. Rothman’s interpretation of Matthew’s manufactured pulmonary artery. The inner diameter for a child Matthew’s size should be 12mm. As you can see there are several areas constricted to a third of that size. Last week Dr. Rothman performed an angioplasty to expand the areas seen above and had some success. But today when Dr. Mayman performed an echo-cardiogram, he found that the pressure levels are elevated and believes that the areas have already returned to their pre-angioplasty measurements. Dr. Mayman thinks we can wait until January. The cardiologists are meeting this afternoon to discuss Matthew’s case and should have more information on when and where the surgery will be. Depending on the complexity, we may have to return to UC Stanford. Matthew is not in any distress nor is he symptomatic. If not for the frequent echo-cardiograms we would never know there is a problem.

Saturday, November 26, 2005

At the end of "the afternoon blues" Matthew finally falls asleep in Mommy's arms.

Friday, November 25, 2005

Just when you thought it was safe to go back in the water…He’s teething!

We just got Matthew off of Methadone. The long evenings when he was on the verge of withdrawal have, for the most part, subsided. But waiting just beneath the surface (literally) is Matthew’s first tooth. In the lower front of his mouth is an unmistakable sharp spot. I only wish these next few months were the only hard times Matthew had ever gone through.

Thursday, November 24, 2005

After watching him for 24 hours Dr. Daugherty was satisfied with Matthew’s condition and released him to come home. It’s not everyday you get to pick up a “prince” so Auntie Kim and I accepted the honor with much pomp & circumstance. We donned Matthew’s “The King” hat, “My First Turkey Day” Bib, his “DAD” Teddy bear and placed him in his stroller (I mean chariot). Then we covered him with blankets bearing trains and cars for the ride home.
So what happened? The prevailing theory is that the lack of morning meds, reaction to “contrast”, large dose of IV fluid, and use of anesthesia coalesced to form a perfect storm that bore down on the unsuspecting shores of Whomagoo Island. Now, with hindsight on our side, we know to leave him in the hospital over night after all future Heart-Cath’s.

Happy Thanksgiving!

As you will see in the following pictures, a good time was had by all at Aunt Gabrielle and Uncle Keith's house. Here Auntie Kim greets Matthew at the door.

Matthew with Aunt Gabrielle, Uncle Keith, and Grandma Wright. All of us truly had much to be thankful for.

Matthew's favorite cousin Daniel never misses a chance to say hello to him.

Matthew and cousin Misti met for the first time.

Too much Turkey?

With hearts and belies content, Matthew and I crashed immediately following his evening meds.

Wednesday, November 23, 2005

Matthew came home last night around 11pm. He woke up this morning just after 1am. He was extremely agitated and having trouble breathing. His mouth was dry, he had another fever, his oxygen saturation level was way down to 79%, and his heart rate was over 200bpm. We called the hospital and they told us in no uncertain terms to come back to the Emergency Room.
We were admitted with haste and brought back up to the PICU. Like a sickening case of Déjà vu, Matthew was hooked back up to all those beeping monitors we had bid farewell to just four weeks ago. Thankfully, Dr. Butler and Andrea cared for him until shift change followed by Dr. Daugherty and Becky. I couldn’t ask for a better or more familiar team to watch over him.

With illness comes blood tests. After five painful and unsuccessful tries by several nurses, Becky and Nancy (the Nurse Manager) saved the day by getting this IV into his head. This access allowed the nurses to run tests and administer medications.

Terri and I finally calmed down enough to realize we hadn’t eaten in 20 hours. Becky promised to watch over Matthew while we snuck out for a bite. When we returned we found Becky cradling Matthew in her arms as he enjoyed his first peaceful sleep in two days. I’ve said it before, “Pray your child never gets sick. If they do, pray they go to Sunrise Children’s Hospital.”

Tuesday, November 22, 2005

As the King Trio arrived at Sunrise this morning for Matthew's Heart-Cath we were greeted by Matthew's favorite NICU night nurses Mandi & Wendy. They gave him love & kisses and wished us luck. Matthew was also visited twice by his good buddy Neonatal Bob.

Poor Matthew had to don this dreadful hospital gown with pink animals upon it. I think I had the least appreciation for it.

Terri held and kissed Matthew prior to the Heart-Cath.

When we first saw Matthew post-operation he was very swollen from the anesthesia and the IV drip.

After about five hours Matthew slowly began to wake up.

When Matthew first came out of surgery he had two leg immobilizers strapped to him to prevent his legs from flailing about too much. Since Dr. Rothman went in through Matthew's groin, they needed to keep his legs stationary to prevent the wound from opening up and bleeding. Once removed, Matthew was eager to run in place.
Earlier in the evening Matthew had spiked a fever of 103! Dr. Rothman said it was a common reaction to the “contrast” used to better see the procedure on the monitors during this very technical procedure. Dr. Tracey Butler came down from the PICU and personally monitored Matthew’s progress. We had been told to skip his morning meds and she was concerned that he needed his diuretics most of all since he had been given so much IV fluid throughout the procedure. So she called down to the pharmacy herself and ordered him a dose of Lasix and an hour later he had the most saturated diaper I have ever seen. Thank God for Dr. Butler because without her, Matthew would have gone home with all that fluid crowding his heart and lungs. Within 2 hours the fever had subsided and we were released to go home and sleep.

Sunday, November 20, 2005

The King Trio went over to Uncle Keith & Aunt Gabrielle's house again today for afternoon football. Matthew was very fussy and had painful gas. I keep telling Terri "Matthew is what you eat". She swears that she hasn't been eating anything out of the ordinary but I think Mommy and Aunt Kim have a "take-out conspiracy afoot". Also, Matthew continues to have an occasional spot of blood in his stomach tube. If you look at his venting tube you can see some of it in his syringe. We have made all of our various doctors aware of it but they are not concerned. Matthew was prescribed some Zantac to calm his little tummy so we'll see if it subsides.
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Our little scholar holding his book

As many of you know Matthew is having another Heart Catheter on Tuesday. His Cardiologist, Dr. Gary Mayman, discovered a leak in Matthew's heart valve. This leak is causing a back flow of blood from his newly constructed pulmonary artery back into his heart. There also may be some constriction. Dr. Rothman will go in and take pictures and pressure readings. If there is constriction they can install a stint to widen the area during the Heart Cath. Matthew will have to be put on a respirator during the procedure but, if all goes well, should be extubated immediately afterwards and go home the same day.
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Friday, November 18, 2005

Matthew visited his GI Dr. Dezenburg today. Dr. Dezenburg fitted him for his new "Mic-Key Button" that will sit flush to his tummy.

Even after Matthew's heart surgery, his heart beat still sounds more like a washing machine than the boom-boom of a drum.

I had to counsel Matthew not to whistle at the nurses.

Hey, this place smells like a hospital.

While waiting for Dr. Dezenburg, Matthew spent some time trying to turn over on his tummy.

Please forgive me. The picture posting utility has not been working. I have been trying to post almost ten pictures for the last 24 hours. I finally found another route to post pictures. So here we go


This morning, Matthew was gripping my face as I sang to him after his bath. When it came time to prepare his medications I transfered his hands to this teething ring. I was thrilled to see him holding it on his own while he investigated it with his mouth.

Terri sent me this picture the other day and I thought it was just precious.

Look how cute his little tongue looks!

These next two pictures are of Mommy singing to Matthew. I love the tongue sneeking out from his mouth.

Thursday, November 17, 2005

This is Wendy, one of Matthew's favorite nurses from the early days at the Sunrise NICU. She came to visit us today at home. In addition to caring for Matthew while he was at Sunrise Hospital, Wendy also came to visit us twice while we were at UC Stanford. Now that is dedication. She was so pleased to see Matthew awake, alert, and gaining weight.

Wednesday, November 16, 2005

Matthew and Daddy at Dr. Tenby's office.

Matthew had two doctor's appointments yesterday. He got a glowing report and two vaccines which made him very upset. Terri told me that he cried all afternoon. Last night he woke up crying several times so Terri gave him some Tylenol PM to take the edge off.
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Matthew holding his Rattle Custom made by Nurse Keniki at Stanford.

Julie and Michelle from Nevada Early Intervention made a home visit today to asses Matthew's development. In most cases Matthew is right where he should be as a 4 month old (he was 2 months premature so he is considered 4 months old developmentally) and he has even met some 6 month old milestones. Terri and I are thrilled with the upbeat assessment. Julie and Michelle were impressed that he could hold things in his hands, support his head, and recognize us as his parents. They said the next milestone to look out for is Matthew putting his foot in his mouth and becoming more aware of his hands.
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Sunday, November 13, 2005

Matthew swaddled after his bath.

All of the sudden Matthew has lost interest in eating from a bottle. We needn't worry about a lack of nutrition because we can simply poor what he doesn't eat down his G-tube. Our concern is that he is developing an oral aversion that will affect him later in life. We see Dr. Dezenburg (his GI doctor) on the 18th and will seek his advice. Matthew weighed in at 10lbs. 9ounces on our home scale so we are in line with Dr. Nakamura's scale.
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Saturday, November 12, 2005

Matthew lost all interest in working out with Daddy when his Mommy came home from the store. Little did he know she brought home prescription refills.

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