Thursday, March 28, 2013

Slow Your Roll!

Have I ever mentioned to anyone that I live with five incredibly stubborn men?  Well, if you didn't know.... consider yourself "in the know".

Over the past 3-4 days under the watchful eye of the medical team, Wynnie has done a great job of being weened down on many variables on his vent settings.  Last night after I left for home they performed another sprint on him (turning off all the vent settings and switching it over to cpap setting -- similiar to what Dori sleeps with at night) and Wynnie did not like it.  He was wide awake so he kept coughing and gagging on the vent tube and was fighting against the puffs of oxygen the cpap was giving him.  He was so ticked off about it that he d-satted down to the 20s and turned blue.  I'm so glad I didn't have to witness that again because the last time he took a nose-dive (Sunday of St Patricks Day) I was pretty shaken afterwards.  Normally I don't panic for stuff that actually matters but seeing him blue and seeing a ton of people all around his crib is NOT something I can handle well.

This morning during rounds the doctor told me that it's a very delicate balance of finding that "happy spot" between weening him down further at a pace that his body can withstand.  He had done so great these past few days that naturally everyone thought he was ready for the next step (remove the vent).  But as the doctor put it, he is doing things his own way and we just have to adjust the plan to where he is comfortable while still weening him toward the goal of vent removal.  So the plan over the next couple of days is to continue weening his settings down, increasing his sedatives so he doesn't go "Wynnie Smurf" on them, and continue doing "sprints" every four hours to work his lungs & the muscles he needs to breathe on his own due to increasing weakness from being on the vent.

The doctor said that if it weren't for the vent, he would not be here today.  But it comes to a point where the vent takes a toll on lungs and on the body which is why they want to move forward before he takes any more steps backwards.  So I suppose Wynnie's stubbornness is his way of telling us "SLOW YOUR ROLL PEOPLE!!! I GOT THIS!! Just lemme do it MY way."

Ok Wynnie... we hear you loud and clear.  Keep working hard buddy... we miss you!

Wednesday, March 27, 2013


In addition to weening Wynnster off the vent settings the medical team also added to trying "sprints" with him. At 4:00am they conducted a extubation readiness test. He failed. Since he failed, they wanted to continue trying sprints throughout the day. The ERTs are also known as sprints. Sprints are when they lower everything practically to nothing to allow him to do all the work of inhaling and exhaling under the watchful eye of his respiratory therapist to begin the process of strengthening his lungs. When they tried it a second time, he d-satted down to the 20s and turned blue. They'll try another sprint at 4 am and let him relax for the rest of today. Our hope of removing the vent tomorrow seems highly unlikely since breathing seemed too high of a task for Wynnie.

We'll see what tomorrow has in store.

Tuesday, March 26, 2013

Slow but steady wins the race

Wynnie continues to make tiny improvements each day and continues to amaze us with his determination and strength. He gave me the greatest gift yesterday morning while I was rubbing the palm of his hand-- he flashed me a big smile. I was so excited that I wanted to scream but I contained myself and just smiled right back. We haven't seen his smile in over two weeks so it was such a blessing to see a glimpse of the old Wynnie back!

He continues to get slowly weened off the settings of his vent. After so much time on the vent, breathing on his own will take alot of strength that he has lost over the past couple of weeks. So the doctors are being very cautious on the timing of all this weening because anything done too quickly would result in his lungs collapsing all over again. It's been a test of patience, faith and family management but we're finally able to see a dim light at the end of the tunnel. By continuing at the pace he is going, they are aiming to take out the tube/vent by the end of this week and immediately place him on a bipap mask to help him breathe. A mask is much less invasive and a big step for Wynnie so we are cheering him on every step of the way.

Dori keeps hollering out for Wynnie wondering where he is. He misses his little buddy. But he is very happy and at peace with being home and getting back to school and his normal routine this week. I already made a hole in the wall with Dori's power chair trying to move it. Apparently I'm a horrible navigator. I'm sure we'll have many more holes made but I'll just blame dori for it and nobody will catch on ... Ha ha ha!!!

Ben and Alex have become really good at praying and Ben is the one who likes to initiate it. We may have a couple of future deacons on our hands. Every Sunday night they have been excited to watch The History Channel's "The Bible" so between praying for Wynnie, watching The Bible and our activities at church for Holy Week--- we have alot of strong faith running through the house. These past two weeks I feel like we've grown closer as a family and I'm very thankful for that.

Saturday, March 23, 2013

Slight improvements = Big Happiness

Thankfully Wynnie's use of nitric oxide in his vent the past 1.5 days has proven effective. This morning's X-rays shows he has a little bit of improvement in lung clarity since yesterday and he hasn't needed to be administered more sedatives to calm him down. I was so happily surprised when I walked into his room this morning and his eyes were nice and open looking around. I tool my mask off for a second so he could recognize who I was. He didn't smile but his face looked at ease when he looked at me. I can't wait to pick him up and gobble him up with hugs and kisses!!!

Dori was the center of the universe yesterday with the delivery of his power wheel chair. It has been since October since he last took one for a test drive, so when he boarded it, he only went a few inches. He was more interested in all the talking and clapping he was getting from all of us than the actual chair. It'll take him some focused PT sessions to relearn how to drive but I'm sure he'll pick it up quickly again.

The power of prayer has once again proven its strength!! Thank you all for your continued support and friendship!

Friday, March 22, 2013

Friday Nitric Oxide Happy Hour

I didn't update yesterday because we were waiting to see how Wynnie would do with being administered nitric oxide. Late Wednesday night through lunch time Thursday he took a bad turn and his chest X-rays looked like his lungs were very cloudy with alot of fluid. He was once again fighting the vent during that turbulent time, so the doctors started the nitric oxide treatment in his vent and adjusted his sedation meds. (not to be mistaken for nitrous oxide aka laughing gas... Although watching Wynnie laugh again would be so awesome!!)

Thankfully all that tweaking has proven successful and he has been doing well and sleeping calmly ever since. The past two X-rays taken since the tweaks have shown nice improvement in his lungs beginning to clear up and with better air movement. Thank you sweet baby Jesus!!!

I suppose Wynnie didn't want us to take his recovery for granted so he just wanted to test us a little before resuming his mission to get better. That little Stinker!! Chris and I spent the day together here at the hospital and Wynnie helped him do his March Madness research and numbers crunching.

Dori has a big day today!!! This afternoon he FINALLY gets his motorized chair delivered to the house. Get ready for another loud video of him driving all over the house. We're so excited!!

Wednesday, March 20, 2013

Day #2 of Good Things

Dorian enjoying the good life on a picnic with Viktoria.  He keeps calling out for Wynnie... just waiting for his partner in crime to come back. 

Wynnie's sweet little hand

Miss Shirley, Wynnie's auditory therapist at school took this picture of him just a few days before he got sick.  It's his new fancy chair for his classroom!  Isn't he handsome?

For the past two days Wynnie has been off the paralytic meds and has been breathing fairly well with the help of the vent.  He hasn't been fighting the vent, gagging nor excessively coughing like he was Saturday and Sunday.  His chest x-rays this morning seem slightly better and overall the doctors are all saying that he is making a positive turn in the right direction.  

Your prayers are working!  I'm never amazed at the miracles God works in our family and we are so proud of Wynnie's fighting spirit!  Keep your prayers coming... soon enough we'll get him kicked out of that ICU and home in no time!  

Tuesday, March 19, 2013

Big Day for Wynnster

Wynnie did great with his complete paralysis they did all day yesterday and overnight. That gave his lungs a chance to get slightly better according to the chest X-rays this morning. Being that he was able to rest for 24 hours, they want to move him forward by removing the paralytic meds and allowing him to breathe with the vent.

Dr Dhar told me that Wynnie is very independent and a strong headed little boy so I would need to "have a talk" with him to make sure he cooperates with the game plan today. As she told me this the nurse was instructed to put his arms in restraints since the last time he was awake he was trying to take the vent and Iv's out. Poor little guy!!

He looks cute as can be and I'm hopeful that today will be a good day. Ben and Alex have been asking to do prayers with me for Wynnie and it's so nice to see how protective they are of him. While Viktoria was watching Dori at home yesterday she said that Dori kept on calling out for "ninee" (Wynnie). Chris's parents remain busy with all the homework, laundry and sports practices the boys have so we are lucky to have such a great network of helpers.

Go Wynnie Go!!

Monday, March 18, 2013


Wynnie had a really bad day yesterday after I updated the blog. They had to continuously "bag" him to pump his lungs up with air and over the course of the day he was fighting the vent with every breath. Both his lungs have collapsed so they temporarily paralyzed him to get his breathing back in sync with the vent.

This morning after reviewing the chest X-rays, the doctors were please that he has had a slight improvement in his lungs from yesterday. But today's "better" X-ray is still worse than his lungs were when he was admitted a week ago. So instead of taking 1 step forward and two steps back like we seem to be doing everyday, the doctors have fully paralyzed him for the next 24 hours to allow the machines to do all the work for him. His body is under much stress and every time he fights that vent with gagging and coughing it just further collapses his lungs. The only way he can get better is if his lungs heal. The only way they'll heal is if they are not agitated. We hope that within these next 24 hours he will get begin to clear up his tough little lungs and begin to heal.

He looks better today (not as swollen and bruised up around his IV lines). Dori has been at home asking for Wynnie all day so I'm praying that'll happen soon enough with God's perfect timing. I can't wait to have Wynnie back home so that things will go back to our "normal". Things aren't the same without all the 4 boys running amuck in the house :)


We are so touched by the outpouring of prayers, well wishes, and kind words from our extended network of friends and family. It has reinforced what we already know-- that Dori and Wynnie are living out God's purpose for their lives. I believe that is to bring joy and love to all that know them, and to remind us how precious the gift of life truly is.

Yesterday a person who I did not know came directly to Wynnie's room to visit while I was here with him. Although we are deeply touched that Dori and Wynnie have many supporters from their school and are loved by people who Chris and I don't even know--- we ask that unless you have been cleared by either myself or my husband to visit Wynnie, please respect our privacy and understand the delicate condition that Wynnie is in and please do not come and bypass the ICU protocol to see him.

Nothing gives us more joy than to know the babies are so well loved!! Your prayers will continue to be our greatest source of strength for Wynnie and our entire family! Dori can't wait to have his partner in crime back home :)

Thanks for understanding!

Sunday, March 17, 2013

Day 7 of RSV Rollercoaster

It's St Patricks Day so we need the luck of the Irish to be on Wynnie's side as he is on his 7th day in the ICU battling through it. He has really made us so proud of his fighting spirit. He's had episodes of respiratory distress and some days have been worse than others but over the past week his condition hasn't majorly improved. Overall his pneumonia that was concentrated in his right lung has now migrated over to his left lung. He gets into his worse bouts of respiratory distress when he attempts to cough out his congestion. Wynnie has been constipated for nearly a week and a half so they are doing enemas, suppositories and all kinds of stuff to help him have a bowel movement. All the impacted poo is pushing his bowels up into his lungs therefore making breathing a struggle.

Dr Cindy Darnell is the main doctor that is heading up his plan of care. She is optimistic that Wynnie will pull through this, but it will just take some time. RSV hits like a bell curve and Dori came in when he was already getting better. Wynnie conversely hasn't peaked so it may get worse before he can start to get better. So my non-update updates I give to friends and family may not seem like he's getting better just yet but we are just praying for patience and for his recovering to be in line with God's divine planning, not ours. Pretty hard to do when both his parents are very type A :).

Dori on the other hand is happily back at home since yesterday afternoon. After spending the day with my sister at the hospital we were greeted back at home with Chris leading the boys to a dance off. Chris's parents had front row viewing so I think they were entertained. So we are just praying that we can host another dance off soon to welcome Wynnie back home!!

My Sunday school class made Wynnie an angel that says "God loves you!" with all their names on it. They wanted to see what he looked like and they all smiled and said he was cute when I showed them pictures of him all happy ad smiling from my iPhone. Today all the Sunday school kids made a king crowns and decorated them. I made one for Wynnie so that anyone that comes to his room knows that he is an anointed child of God and his is the little prince of our family. Go Wynnie!!

Thursday, March 14, 2013

RSV and Pneumonia Hospitalization

Dori started getting sick with coughing, fever and congestion over a week ago. Wynnie caught it from Dori last week, just a few days later. After monitoring them all night on their oxygen levels with their night nurse Stephanie, neither of the babies could keep their O2 levels above low 50's. Normally they breathe without the need for additional O2 and are able to maintain their levels at upper 90s. After both babies being treated with antibiotics and fever meds for over a week, and with the new O2 levels dipping to dangerous levels, the on-call Pulmonologist recommended we take them into the ER.

I gave Wynnie a relaxing quick bath before heading out to the hospital and packed my overnight bag and drove them over to Childrens Medical Center (in Plano) since it's only 15 minutes from the house. In order to transport them, I removed them from the oxygen for the ride. Dori was talking during the ride saying "bye bye" and calling out Wynnie's name. Wynnie was whimpering a strange soft cry but I couldn't pull over because I wanted to get to the ER as soon as possible. By the time I pulled into the ER, Wynnie's face had lost all color (skin color was grey) and his lips were blue. I went into "this is not the time to panic" mode and put Wynnie over my left shoulder and carried Dori on my right forearm.

The ER was completely empty besides the check-in attendant so I while he's asking me for contact information I keep telling him "this one is blue and needs to be placed on oxygen ASAP!"

Within 30 seconds they took the babies back and a team of 6 took over Winner's care while 1-2 people were working on Dori. It took quite a few minutes for Wynnie's color to slowly return. His hands and feet were ice cold. By the time he was regaining his color, my phi mu girls Francine and Angela arrived to the ER to offer support and Chris arrived shortly thereafter. We were hoping to stay at children's in Plano but due to their underlying medical conditions (ml2) and due to a lack of an on-facility anesthesiologist 24 hours a day, the babies were transported to Children's in Dallas via ambulance.

Wynnie had to be intubated and placed on a vent. His body was working too hard and progressively getting weaker with breathing only an O2 mask, thus the need to take the pressure off of him and letting the vent breathe for him. We have mixed feelings about this because intubating an ML2 child is always a very big deal-- it's very risky and could cause more damage than good due to their abnormally narrow airway.

As I write this we are on our 4th day of our hospital stay and Dori has progressively improved, while Wynnie has hovered from "critical yet stable" condition to slipping slightly worse as of last night. Dori was moved out of the ICU yesterday and is on the regular respiratory inpatient unit. Chris, Viktoria and I have been rotating night duties with the babies so that neither of them have to sleep alone. We are also rotating time to spend it with Ben and Alex who are on spring break. Chris's parents came down to help us with Ben and Alex while we're at the hospital and shuttle them back and forth to baseball practice, etc.

We've been very thankful for all the prayers, all the texts and all the wishes for recovery from all our friends and family. It means alot. Ben and Alex worked hard at making lots of scratch and sniff get well signs for the babies. They smell fabulous!! :-) they also were very sweet to visit and pray with the babies yesterday and keep asking when the babies get to come home.

Both babies have RSV... Dori caught it first and it ran its course so he was already in the recovery phase when he arrived to the hospital. Wynnie on the other hand was at the worse part of the course. Aside from having RSV, he has pneumonia, anemia (from all the labs drawn), pulmonary edema (fluid in his lungs) excessive thick congestion he cannot get out, constipation, and more bacterial infection in his lungs. The original plan was to remove him from the vent to allow him to breathe on his own, but since he started having bronchial spasms last night, he'll have to remain on it due to all his respiratory distress. Right now he is getting prepped for a blood transfusion.

Dori's heart is enlarged (see the pictures) due to the RSV making his body work harder. The cardiologists were not overly concerned over it. Now that he is getting better he is smiling and talking.

Thanks for keeping our babies in your prayers and for keeping up with us this week! Your prayers and your friendship is what is helping us get through this with a good outlook.