Dan & �Lucy Lu� Jiang came to visit us this afternoon. Their daughter, Alyson, had the same defect as Matthew. Alyson was in the bed next to Matthew�s and we became friends. We went out to dinner tonight and as we shared our child rearing experiences I was stuck by the similarities. Both Dan and I approached our child�s problem from a man�s analytical perspective. We each looked at the statistics & treatment options and decided then and there that our child would be fine. Lucy and Terri, on the other hand, were 180 degrees from us. They ignored reason and were led by their emotions. Lucy is a software engineer and thus is very analytical. But when it came to her child, she had all the same worries, guilty feelings, and �why me� thoughts as Terri. Terri and Lucy each recounted the same reactions to the doctors telling them this experience would make them stronger. �I don�t want to be strong�, they each thought, �I would rather be weak and have a healthy baby!� Dan and Lucy are great confidants because they know exactly what we�ve been through.
 

The King Trio with Josh & Kristen Carter

Josh & Kristen Carter came to visit today. Early readers of the Blog may remember the similar story with their son Elijah. They brought gifts for Matthew and Terri. They gave Matthew a little stuffed giraffe. They explained that to pump the blood all the way up to their head, giraffes have the biggest hearts of any land based mammals. What a perfect sentiment for Matthew. Knowing that Terri�s thoughts are never far from Matthew, they gave her a darling bracelet with his name on it. We really enjoyed meeting them and I got the impression that they benefited from a visit back to the hospital under better circumstances. May the Lord bless their journey towards healing.
 

We saw Dr. Hanley yesterday on our way out of the CVICU. Yes, the halo is still there. Look close, this is the man who saved my son's life. Oh and Kim, Terri said she still hears the angels singing in the background when he's around. 

This is Jing, one of Matthew's loving night nurses. Jing loves "The Kid". 

Grandma Sue helped keep Matthew's pacifier in place today. 

Matthew looking out his new window. 

We were moved to a new room across the way today. The rooms are filled with patients based on their acuity level (how sick they are). Since Matthew is healthy and getting ready to leave, he was moved to the other end of the CVICU. We had quite a bit of nurses and doctors come by today to wish us luck and say goodbye in case they don�t see us by Monday. We are reluctant to make a big production out of our pending departure. Past experience has shown that if you are too rigid in your planning, Matthew�s occasional surprises make for a very disappointing delay.
 

Matthew and I wore Matching red shirts today

Richard is one of the workers here at the hospital. He stopped in to refill some supplies today while I was holding Matthew. I used to think he felt sorry for our family and all we had been through. He would always look at us quietly and smile. But this afternoon I saw something different in his eyes. He told me that he and his wife could not have children and were contemplating adoption. We talked about the various concerns that go along with adoption and invetro-fertilization. Suddenly it dawned on me. Even with all our troubles, the look in Richard�s eyes was envy.
 

This was Matthew at 10am and... 

�this was Matthew at 4pm

Having trouble differentiating the two? That is because he was comfortable and asleep most of the day. He had a few very respectable messy diapers but little else to write home about. And that, my friends is the way we like it!
 

Matthew & Katelyn

Thankfully, it appears that yesterday was enough drama for two days. Matthew was back to his old self today. All of his settings were back to pre-catastrophe levels. The doctors and nurses agreed to keep his meds and settings status quo. Sandy the Nurse Practitioner, made it a point to tell Terri �I�m pleased� as has become her reassuring custom. Now that Matthew is back on Vapotherm, I was given the task of inserting his �NG� (Naso-Gastric feeding tube). After several attempts in both nostrils, I got it in. It was definitely not a pleasurable experience. Katelyn, Matthew�s wonderful nurse, was right by my side and helped wipe off the traces of blood left on the tube after each unsuccessful attempt. The utopian image I had of feeding my son a bottle while cradled in my arms will have to wait. These feedings are strictly utilitarian.
 

Daddy inserting Matthew's feeding tube. 

Back to Normal

We have encouraging travel news. Our insurance approved Matthew�s flight back to Las Vegas. We are hoping to have Matthew transported back to Sunrise Hospital on Monday 9/19/05. Matthew�s little �Hic-cup� yesterday was enough to set us back through the weekend so Monday is very tentative.
 

On a ridiculous note, we regret to tell all of you that we were forced to close Matthew�s medical fund account at Wells Fargo Bank. He won�t qualify for Medicare if he has his college fund and the medical fund. Thank you to all that were so thoughtful to deposit money into this account. I�m sure you understand that his Medicare eligibility must come first. We promise to put what money there was from this account towards his bills.
 

Today we went from this... 

...To this

Matthew was smiling and fine at 2pm when Terri went to pump and I went to contact our insurance company. Terri returned after 3pm and Matthew was back on BiPAP. The doctors have been slowly weaning him off his medications and diuretics. Since Matthew can�t verbally communicate how he is tolerating the weaning process, we are all left with non-verbal clues. Matthew spoke volumes today in protest. By mid-day Dr. Kache put him back on BiPAP to steady him before he fell. As I write this entry I see that it is after 11pm. It has been an agonizing day but Matthew is back on the Vapotherm. I am exhausted from worry. This is our family�s life now. This uncertainty is the threat of each new day. I am, nonetheless, grateful for each new day with my family.
 

Today Dr. Kache told us that they are in the beginning stages of arranging for Matthew to be flown home to Sunrise Hospital in Las Vegas. Several departments of both hospitals are coordinating with one another. In preparation for a possible transport home, the nurses and respiratory therapists have been supervising some �on the job training� with us. Raji taught us how to administer Matthew�s medications and feeds. She also showed us how to put a feeding tube through his nose, down into his stomach and check for proper placement with a stethoscope. Connie, Matthew�s Respiratory Therapist, showed Terri and I how to give Matthew his respiratory medicines and massage treatment. It will be a lot of work on a very strict schedule. When Matthew does come home, he will not be able to have visitors until his lungs mature beyond their present state. Still, the thought of being home, in any capacity, is worth the amount of work. There are too many variables that could affect Thursday�s outcome for us to even count. We promise to keep you all informed through the Blog and Janet�s Nannigrams.
 

So will I be flying first class or coach? 

Introducing Matthew to birdies early. 

Connie trains Terri to give respiratory treatments. 

Matthew's night nurse Lance 

Reunited�

If you are hearing Peaches & Herb in your mind, so was I when Terri and Matthew locked eyes again this morning. Terri was so excited when she heard his little crying voice starting to return.
 

"Go Niners!"

Matthew and I watched the 49ers beat Uncle Keith�s favorite team today.
 

Matthew going for the nose
I wanted to take a moment to thank Tina Kult at The Congenital Heart Information Network. She is the Mother of Spencer and runs the Spencer Fund. They are going to send Terri and I gift cards to buy groceries at a nearby Albertson’s since we have been away from home so long caring for Matthew. Please visit them at www.tchin.org and thank them if you get a moment. 

Today is the four month anniversary of Matthew�s birth. We have come quite a distance from his premature birth, to his diagnosis, getting him strong enough for surgery, the nine hour procedure, and his continuing recovery. The uneventful day was a good omen as we pass this four month milestone. Matthew is continuing to tolerate his feeds well. He is up to 36ml of formula every two hours and consistently has less than 1ml of �drawback�. His overnight nurse Pamela was unhappy with the look of his skin around his Internal Jugular IV line so she advocated for and won its� removal. His neck is still red but they are putting an ointment on the area and the dry, open air will help subdue any inflammation. The semi-sweet-secret stash of chocolates continues to attract our favorite visitors. Annie, Raji, and Dr. Chan all popped in to visit and made off with something delectable.