Miracles

Below is a video of Nicholas trying to talk to us. The quality is bad and so is the lighting but the subject is a true miracle!! As most of you know, Nicholas was very close to not being here today. He was then not supposed to be able to breath on his own, talk, cry, anything such as that. Nicholas has surpassed anything we ever even hoped for him. He is alive and that was enough. The Lord blessed us, and continues to do so, with that plus so much more.

Every time we tried to catch Nicholas "talking" he would stop. Below is a small example of what he is doing. He does it towards the end of the video. I pray you see the Lord's miracle in our son as we do! He, according to Neurology and his CAT scan, is not capable of such things.

Busch Gardens

This picture says it all....
Megan: The Cost of an Untidy Chamber
Stephen: For Want of a Quiet Tongue. That would be root beer!!!! Don't punish the woman who does your laundry, buys you toys, cleans your room, etc.

Stephen's idea of a ride (front row, second seat)

My idea of a ride. I want to stay really close to the ground!

Nicholas loved the bumpy sidewalk. He would cry when we stopped Going into the Dark Kastle ride. It was a bit scary too!!

Before Raging Rapids..... After Raging Rapids...

My four boys......... Nicholas was talking to daddy.

We had a great time at Busch Gardens. Thank you so much for all of your prayers and support.

Much Love-The Richardson Six.

Nicholas James Richardson, DS, CHD, CAVC, TOF, CP, CVI

WOW! Sounds impressive doesn’t it?

Our society is enamored with labels. We love to label. The world of academia has taught us the more alphabets behind a name, the smarter the person and the more respect they should garner.

Well, the letters behind Nicholas’ name aren’t degrees of higher education. No, the letters behind Nicholas’ name are mans way of labeling him; of defining who he is and putting him in his proper box.

Nicholas James Richardson, Down Syndrome, Congenital Heart Defects, Complete Atrio -Ventricular Canal Defect, Tetrology of Fallot, Cerebral Palsy, Cortical Visual Impairment. Now we can properly categorize my son; he’s a severely disabled child with multiple birth defects. Now society can be happy. Nicholas fits neatly into his proper box where labels define him.

Not so fast! Lisa and I don’t subscribe to that secular non-sense. I hate labels and I despise the term “birth defect.” You see, I don’t believe there is such a thing as birth defects. God created Nicholas (and all of us) in His image – in His likeness. The bible says in Jeremiah 1:5 that "Before I formed you in the womb I knew you, before you were born I set you apart…” James 1:17, which is Nicholas’ life verse, says “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”

The fact remains that Nicholas does have numerous “medical conditions.” But Nicholas does not have “birth defects” as society would have us believe. When God created Nicholas, when He formed him in the womb, He did not make a mistake, there were no screw-ups. God created Nicholas just the way He wanted him. In fact, in God’s eyes, Nicholas is perfect. Only in man’s eyes do we see the imperfections.

And a voice from heaven said, "This is my Son, whom I love; with him I am well pleased." Matt. 3:17.

Nicholas James Richardson, COG, PSOM.

Nicholas James Richardson, Child of God, Precious Son of Mine…yeah, now that’s more like it.

SPR

Gone Shoppin'

Going shoppin...that's what Georgette, the night unit secretary, calls getting discharged. Well, we're shoppin...Praise the Lord.

Prior to leaving the hospital, we went to the PICU to say goodbye to our hero's. Thanks to all who were involved in our journey this week. We love you all.

PICU to Floor

At about 8:00 pm tonight, Nicholas was moved from the PICU to the floor. This is a huge step, although being on the floor is not nearly as exciting as the PICU. There appear to be two factors keeping Nicholas here right now: oxygen and antibiotics. He is on a minimal amount of oxygen and we have an O2 concentrator at home so that should not prevent us from going home. The second issue, the antibiotics is a bit different. He has a central line in his neck right now that his antibiotics are administered through. And, he has 3 days of anti's left, which is through Sunday. The question to the doctors tomorrow will be, can we go home with the central line and give him the anti's ourselves? Or, can they be administered through his GJ tube? We shall see!

SPR

Free at last

I went down for coffee and a bagel this morning around 7:00. When I arrived at the PICU door, the resident was walking out. He was coming to find me because he extubated Nicholas and they wanted me to know. I would have gladly delayed my bagel if they would have told me what was going to happen. Anyway, he's off the vent now but still highly agitated. His morning x-ray looked better than yesterday but still some fluid in the lungs. If all goes well, we should leave the PICU later today and return to the floor.

SPR

Nicholas took a small step backwards today and was not extubated. His lungs are still a little wet which causes concern for the medical team. He also had an adverse reaction to one of the narcotics today which caused them to order an EKG. As of right now, the plan is to attempt extubation again in the morning. Of course all will be predicated on his 4:00 am x-ray and his clinical exam in the morning. Please continue to lift little Nicholas up before the Father.

Thanks to all who have emailed and called. We especially appreciate those that have commented on this blog site. It encourages us more than you can know.

SPR

To my sweet Nicholas

My sweet Nicholas-I love you. You bring so much joy into my life. I still cannot believe that the Lord honored me by allowing me to be your mother. I am truly blessed to have you as my son. The son I was so scared to have and now am so scared to lose. Right now you are doing better and I am so thankful for that but I am still scared Nicholas. I look into your sweet face and I remember what happened two years ago in this very place. I remember the feeling of almost losing you. I don't want to lose you Nicholas. You're my son and I want to experience life with you. Be strong little one. I long to hold you in my arms and make it all better but I cannot. We must trust in the Lord and His strength to get you through this. Fight my little pickles. Get well so we can bring you home. I love you, mommy.

Dear Lord, I ask that you heal my son, my little pickles. Please give him the strength to beat this infection. We love him so much and are so thankful you brought him into our lives. You are the Master Healer and we put all of our faith and trust in you Lord. We know you hold him in your arms. We know you love him more than we could possibly imagine. Please heal my baby so we can bring him home and live life with him. In your precious name, Amen.

Humor......

I LOVE TARGET
On the way to the hospital yesterday Megan and I saw a rainbow. A perfect whole one!! It started on one side of the highway and ended on the opposite. We actually drove under it and saw it disappear. We have never seen one like that! Talk about a feeling of peace and reassurance. Wow!
So my sweet Megan says "Mommy...that is Nicholas' rainbow. God made that for him so Nicholas will know that God will always take care of him and so now you don't have to cry unhappy tears anymore."
I reply " Oh, Megan that is so sweet. You are so right. God is in control and we have to trust Him." I was about to continue our conversation on trusting God when......
Megan says " Oh look, look Mommy. There's Target!! I LOVE Target!" Well...there went that sweet moment.

RIPPED PANTS
I have been trying to lose weight since having Nicholas. No luck. Down 5 lbs, up 5 lbs. Well, I think I may finally have it this time. I just caught up on laundry last night but before that I ran out of jeans that fit. Anxious to get to the hospital I thought I could try and "squeeze" into my old pants. You know the old kind that are faded, holey, and you just love? So I do the female trick and lay down sucking in the belly as I get those jeans zipped up. I am so happy that I got them zipped. I can't breathe too well and cannot sit down great but they are on. All day every time I sit I hear a rip. I don't see any holes so where is that noise coming from? Then Boom!!! I sit down and a huge hole rips down the side of my pants. Instant freedom. They weren't tight anymore!!! Of course, I am at the hospital with no other clothes. I so lovingly got the comments from our sweet, kind, and dedicated nurses "Hey Lisa.....love the underwear." Glad so many people could find humor in my ripped pants!!

SMASHED FACES
Nicholas' PICU room faces the highway so every time one of us is heading up there with the kids we tell the other one to wave from the window. So here comes Stephen up the highway with the kids. They all start waving out the car window and I start waving back. Well, they get stopped at a light and I can still see them. So, I wave like crazy. "Can you see me?" "Can you see me now?" Since the kids love this game so much I want to make sure the kids can see me all the way up here on the 6th floor in this dark tinted window. I plaster my face against the window, slamming my hands flat on there. Then I hear Stephen D. "I see you...I see you mommy!" Good my job is done. Then I hear the snickering behind me. Again, a good laugh at my expense. What a picture that made with my face and upper body plastered against the window so my kids could see me. The things we do to bring a smile to our kids faces!!!

QUICK UPDATE
Nicholas will not be extubated today. Even though his lungs look better there is still a lot of junk in his lungs. Keeping him intubated helps his lungs rest and allows them to suction the junk out of his lungs. If they extubated him right now, he would be at a high risk of going backwards again. They are being very cautious with Nicholas due to his love of the words "code blue." We are so thankful for all them and the care they take with him. We are very blessed to have such an awesome team that cares so much. They will start to wean him today so the prayer would be that his lungs remain strong and get cleared of the secretions.
Thanks so much for all of the prayers, emails, cards, etc. We have gotten all of the messages and they mean so much to us. We truly appreciate all of the support!!

Bronchoscopies

That's Dr. Rubin in the black shirt in the foreground.

Thanks for the prayers...Nicholas' 4:00 am x-ray showed that his pig bronchus which had previously been collapsed had popped open during the night. The doctors were very impressed at how good his film looked.

Dr. Rubin conducted the bronchoscopy this morning and was very pleased with what he saw. In fact, when he was through he said, "Congratulations, you're going to Busch Gardens." Of course we are a long away from that being reality but it certainly sounds as if we have gotten over the hurdle.

We are still awaiting the doctors to make their rounds, but the rumor is that they may try to extubate his vent at some point today. More to come...and keep up the prayers.

SPR

Of Pigs and Toddlers...

Nicholas was diagnosed 2 years ago with "Pig Bronchus", an unusual condition where one branch of the right bronchus branches off of the trachea. As such, persons with his condition are more susceptible to aspirations and pneumonia. The x-rays today revealed that this upper portion of his right lung, his "pig bronchus", had collapsed.

Tomorrow morning, Nicholas will have a bronchoscopy conducted. This should enable the medical team to determine if there is a mucus plug blocking this particular bronchus. If so, they may be able to suction it out. If not, he will continue a strict regimen of chest PT's to help loosen things up.

Other than the pneumonia and collapsed upper lobe, he is very stable. He is still on a ventilator but all of his major vitals look good. There is still no time table as to when we might leave so our vacation plans are looking dimmer by the moment.

Please pray that Nicholas will continue to improve. Pray for our other children, who have become accustomed to sacrificing their wants for their precious little brother.

...On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. 2 Cor. 1:10-11

SPR

Here we go again

Nicholas continued to decline after arriving at the hospital last night. At about 1:00am, Nicholas tried to stop breathing. The nurse issued a "code blue" but CPR was not necessary. After several minutes, they got Nicholas stabalized and made the decision to intubate him and transfer him to the PICU. Intubation would force him to breath and give his lungs a chance to rest. The pneumonia apparently was worse than they originally estimated.

During that time I asked the nurse if I should call Lisa, who was at home in bed. The nurse said "call her." Her response had a sense of urgency which scared me to death. So, I got a second opinion and asked the resident doctor her opinion. "With his history, you better call her," she replied.

Lisa arrived and we both had to wait in the same room that we waited when Nicholas suffered respiratory arrest almost 2 years ago. It was very surreal. We waited more than an hour more while they put a "central line" into Nicholas.

At the moment, Nicholas is sedated and the vent tube is breathing for him. I am still waiting on the x-ray results to see if his lungs have changed. No word on how long he will be intubated or even how long we will be here.

After our February crisis with both Nicholas and me in the hospital, Lisa and I decided our children (and us too) deserved a much needed vacation. We planned and paid for a 4 day trip to Busch Gardens/Williamsburg next week. That is obviously in question now. Please pray for Nicholas' recovery and that we might still be able to vacation and get some much needed mental respite.

Back to Brenners

Today we brought Nicholas to Brenners and he was admitted for a probable pneumonia infection. We will probably be here for several days. Life is never easy under these circumstances, so please pray for us all.

More updates to come.

Are you tricking me?

We got new carpet in our living room the other day. I asked Brandon if he wanted to help me pull the old carpet up. How many times does a child get the chance to pull carpet up....and not get in trouble? Here's how this event went...

Mommy: Brandon, come help pull up the carpet.
Brandon: Really?
Mommy: Yep...come on. Let's get pulling.
Brandon: Are you tricking me?


Oh Geez....I am in TROUBLE!!! Giggle, giggle.


Are you sure I can do this?


I'm pulling mommy. You better stop me now if you're tricking me!


OK, this is harder than I thought but I'm still pulling.


Hopefully he truly understands this is a one time event and we DO NOT do this to the new carpet!!!