Thursday, September 29, 2005

Matthew is the poster baby for Melanie Baldwin's donation page on the Las Vegas Heart Walk website! Please check out and click on Melanie's name under "Top Fund Raisers". Our family was touched that Melanie wanted to dedicate her walk to Matthew. Aunt Kim and Uncle Mitch have sponsored her walk and so have Terri and I. Go for it Melanie! Posted by Picasa

Mommy consoling Matthew.
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Today Matthew was taken off of Vapotherm! He is now on a regular oxygen cannula that is humidified but not heated. His oxygen settings are at 30% and his saturation levels were perfect. He turned a little blue when they were switching him over but he was just being fussy. Afterwards he was sleeping peacefully. Terri and I spoke with Dr. John Duong-Tran who is very nice. He told us that they will continue to slowly wean Matthew off of his pain medications. His X-rays have been ordered for every other day now. Dr. Duong-Tran believes Matthew will be off the respirator on the same day as his surgery since his lungs are doing so well.
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Over the past couple of days Matthew has been very fussy and agitated. X-rays show that he has air in is stomach and intestines. The doctors believe this is from crying so much. The reason he is crying is likely that they went down on his pain medication. They have given him a suppository and raised his pain meds back up a fraction to keep him calm. Terri continues to be the "Marathon Mommy" spending an average of 12 hours per day at his bedside.

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Matthew gazing at his reflection. Posted by Picasa

See no evil Posted by Picasa

Tuesday, September 27, 2005

Have you ever seen a more worldly, experienced look on a child's face? Posted by Picasa

Matthew is hang'in with the boys. Posted by Picasa

Monday, September 26, 2005

Matthew gazes at his mobile

Matthew had a good day. Terri said he was awake and smiling almost the whole day. I got off work and met him at his bed in time to watch a little of the game before he fell asleep. His Vapotherm is down to 2 1/2liters of flow. The doctors want to concentrate this week on weaning him off of Vapotherm to a nasal cannula with oxygen. His gastro-intestinal surgery is tentatively scheduled for next Tuesday. One bit of disappointing news was the realization that Matthew's 9.5lb weigh in was erroneous. He remains around 8.5lbs.
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Matthew & Daddy watch football
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Sunday, September 25, 2005

Matthew was smiling big for Aunt Kim today.

Aunt Kim noticed a series of Premature Ventricular Contractions (PVC) today while looking at Matthew's monitor. I always thought PVC was just for sprinkler systems. In fact, a PVC in heart lingo is when the cart is leading the horse. That is, the heart beat gets temporarily out of sync with the left and right side contractions switching their firing order. We brought it to Dr. Daugherty's attention and he explained that it is a common occurance in all of us. It is of more concern with Matthew though because of his heart defect. Dr. Daugherty ordered some tests but thinks the likely cause was an electrolyte imbalance and, therefore, can be easily fixed.
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Blasphemy was brought into my house today. Uncle Keith, in a subversive attempt to lure my son away from his Daddy's Bay Area roots, bought several St. Louis Rams outfits for Matthew and had them shipped to our house! Since I'm not into mind control I thought I would let Matthew decide for himself. So we washed the outfits and brought them to the hospital. As you can plainly see Matthew had a very distasteful look on his face while sporting his new Rams gear.
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Today was Terri's Birthday. She turned sweet sixteen again this year. Time just seems to stand still for her.
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Saturday, September 24, 2005

Matthew's boxer pose

Matthew weighed in at a bruising 4.4kilos today. That is in excess of 9.5lbs! Even so, the doctors are going to surgically implant a G-tube late next week. A gastro-intestinal feeding tube will look like a button on his abdomen. It will be a much more stable way of administering his feeds. Even more important is another procedure that will be performed at the same time. It is called a Fundal Plication. The doctors will surgically tighten the entrance to Matthew's stomach thus lowering the risk of him spitting up food. That will be a relief for Terri and I because Matthew aspirated some breast milk into his lungs before his surgery and it caused all kinds of respiratory problems. While this will make our home life much more manageable, it comes with a price. During the procedure Matthew will have to be re-intubated and put on a respirator. His Pulmonologist, Dr. Nakamura, believes that he will only be intubated for 1 or 2 days and possibly less.
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Dart is back on the job holding Matthew�s pacifier.
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Thursday, September 22, 2005

By the end of the day Matthew�s fever had subsided. He�s had a new PIC line installed from which to draw blood, infuse lipids, and administer antibiotics. He continues to tolerate his feedings well and has been bumped up to 60ml over 90 minutes.
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"Not now Daddy. I'm talking to Mommy." Posted by Picasa

Matthew takes a deep breath during Jessy's respiratory treatment. The "nebulizer" you see here turns his medicine into breathable vapor. Posted by Picasa

Daddy and Matthew share a knowing glance after his latest PIC line was installed. Posted by Picasa

Big Brother Casey visited for over 4 hours today. Posted by Picasa

On the phone with Doctor Mayman

Matthew is wrestling with a high fever. This message from Terri says it all:

Note from Terri at 1:22 a.m. today
He's running a fever of 102 right now... I�ve spent 14 hours at the hospital... his heart rate was over 200 for about 3 hours... for about 30 minutes, it was 218+.... geez..... They started him on some antibiotics and are doing some blood & urine tests.... he had a temp on and off all day... his respiratory rate was up there too... in the 50's.....and sometimes 60's... (TOO HIGH FOR HEARTRATE & RESP)

They did put his vapotherm back up to 8.... I don't really know what's going on with him... it's weird.... they want to try to put a pic line in tomorrow and get him on some lipids... well... that's what they were saying before tonight with his fever coming back.... just when you think you're going to get a break! I forgot to 11:45 tonight... I met Matthew�s Pulmonologist... Craig Nakamura...what a great guy he is... he said after reading Matthews reports that he could see that we've all been thru quite an ordeal..... But was very positive about his getting better... what I liked best is the fact Matthew was past the idea of a trach! whew!!!!!!

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Wednesday, September 21, 2005

Matthew is comforted by his fur & feathered friends. Posted by Picasa

Matthew�s transport was a complete success! Matthew and Terri arrived Tuesday afternoon and were checked into the PICU at Sunrise Hospital. Matthew�s Vapotherm has been lowered to 7 liters with an oxygen setting of 30%. He has his own room for now on the 4th floor. The goal over the next 2-3 weeks is to wean him down on the Vapotherm, diuretics, and pain medications. There is talk of putting in another PIC line (long lasting IV) so the hospital staff can put him back on Lipids to gain weight.
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Monday, September 19, 2005

Matthew is loaded into his Ambulance. Posted by Picasa

Brenda, Rebecca, and Alex the RT came from Las Vegas to transport Matthew. They were very good at calming two nervous parents. Posted by Picasa