Thursday, February 28, 2013


I've got good news for you guys. Several days ago I saw a commercial advertising that "stress sweat" is 4x worse than regular sweat. I can testify to that statistic, but I also need to testify that Secret clinical strength can hold up to the stress sweat. It can even handle a "code red" and sudden change of plans if necessary.

Parson had another great night. Darby on the other hand is puny. After a tele-medicine visit earlier this week, she still hasn't improved so she went the doc today. She should be "good as new" soon. The only thing worse than one sick kiddo - is TWO!

So Rodney got Darby situated and made plans to head this way for Friday's surgery. Parson & I settled in and set things on "cruise control" for a calm day. About that time - the doctors came in to tell me we had a change of plans. The docs decided to split the surgical procedures so that we could have specific surgeons & Parson would not be under anesthesia for an extended amount of time.

So, the tracheostomy surgery took place earlier today and was very uneventful. The combo GTube/fundoplication surgery will take place on Monday.

Par is resting comfortably after surgery. They will keep her paralyzed and sedated to protect her for the next few days. She will remain in ICU for 5-7 days until the first trach change. After that we will move back upstairs to PCU where we will receive all of our trach training.

It is so great to see my little Sweet P with nothing taped on her face or in her nose for the first time in 6 months. She is just so stinking cute. Our little trooper reminds me to laugh and smile in spite of the circumstances. They kept her without food all day today to prepare for surgery and she still remained so smiley & happy. She was blabbing and laughing as the anesthesiologists were wheeling her down for surgery.

"She is clothed with strength and dignity and she laughs without fear of the future." -- Proverbs 31:25

That's my girl! I am SO thankful for my happy girls, ENT doctors that went to Harvard medical school, praying friends and clinical strength Secret. I'm pooped after the big change of plans, so this Momma is gonna take a little nap.

Monday, February 25, 2013

Busy Chickens

Well the chickens have been busy out on River Ridge Road. I guess they know Easter is coming so these crazy ladies have been hiding eggs. Check out the pic below. They laid 15 eggs in the baby swing on top of the swing set/slide! When Rodney sent me the pic of the hidden chicken eggs, it got me thinking about Easter and Springtime. Darby colored Parson the sweetest pictures that are hanging here in her baby bed. The message on the pictures is "Spring is for Easter, When all things are new... a time to be thankful that Jesus loves you!"

Parson has had a great couple of days. Really back to her "old" self. It makes me SO happy. I think she is charming the staff since she gave them such a scare last Friday -- It is almost as if she is making peace. This morning she had an upper GI test to prepare for surgery. There are a few other tests pending as well. As of now, it looks like surgery will be Friday but surgeons are still working out the details. This morning Dr Mallory and I visited briefly about a transplant. He mentioned that many of the tests Parson has undergone already are part of the lung transplant "work up". This along with the pending surgery for trach & GTube would put her in a good place for transplant and the need to go on "the list". In the meantime, we are just hanging out and enjoying the high flow oxygen.

Darby has got a great new smile -- She lost her first tooth and had a visit from the tooth fairy last night. She has been coughing up a storm and woke up about 2am and coughed the tooth right out. The tooth fairy left her a gold coin and she is very proud.

When all things are new...
New smiles, new surgeries, new eggs.
Seems like there is a whole lotta "new" going on for our little family. Everyday when I wake up something is new. I found a great verse today that helps me hold on for any kind of "new".

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” -- Lamentations 3:22-24

Somedays lately the "new" has been very scary, especially related to Parson's status. Soon we will have a completely new routine. Other days, the "new" is exciting like Darby loosing a tooth. She has been waiting for this day for at least two years. Now the old tooth is gone and it will soon be replaced. In fact, the neighbor tooth is already loose too.

Whether the "new" is scary or exciting, one thing is for sure - My hope is in HIM.

Sunday, February 24, 2013

PDiddy's Great day

Woooohooo! Today was a great day. Probably the best day yet. No major respiratory spells so we got to move from ICU to progressive care (critical care step down unit). We have a TV for the oscars and I can stay in the room where we have a shower too. :) I am across the hall from the lounge with a washer & dryer - I feel like I have won the lottery. Jackpot! ... It's the little things.

Mom has been here most of this past week to help me keep things straight. Don't know what I would do without her. Rodney and Darby also came for a visit this weekend. They were certainly a good "shot in the arm" to start week 4 in the hospital. Darby colored the sweetest pictures to hang in Parson's crib.

Parson's biggest fan, Dr. George Fidone stopped by to see her today. Just a little "house call" all the way from Lufkin. It did me a world of good to see him because I trust his judgement and value his opinion tremendously (plus he has walked me through every step of this healthcare crisis with Parson so far). I filter EVERYTHING through him and I know without a doubt that I would have already gone NUTS without his guidance. He has gone WAY above and beyond for Parson and me. He definitely has my vote for president of the PDiddy Fan Club. (If you are looking for a great pediatrician, head on over to The Children's Clinic in Lufkin and tell him that PDiddy sent you.)

Early this week we will have a consult with the ENT docs and others to work out details of surgery for the tracheostomy and the GTube (feeding tube). The surgery will be the first step to begin the journey home.

I am SO thankful for today. Parson needed a good day. I needed a good day. Tomorrow I will practice "being still" to prepare for the road ahead. I don't know what is ahead, but HE knows the way.

"The Lord will fight for you; you need only to be still.” - Exodus 14:14

Thursday, February 21, 2013

Getting older by the Minute

Well the new has worn off of the "crispy"towels. My travel tube of toothpaste is empty. It is time to swap out my deodorant selection. And I certainly got a bunch of new gray hair today.

My oh my. Parson didn't have a very good day. She started struggling to breathe just after lunch, then at 5.30 this evening she vomited while having a spell and rapidly desat'ed to 45. She was gray with blue hands/feet. They were able to stabilize her in PCU, then rushed us back to PICU. We narrowly escaped another intubation. Currently she is stable, smiling & playing. They suspect she aspirated. She gave me quite a scare. I felt like I was in one of those crazy episodes of ER. Meanwhile I am getting older by the minute!

With all of these events, we have good news and bad news.

The good news is the doctors have moved Parson over to high flow oxygen which seems to be helping to provide positive pressure that her little lungs need. The bad news is that she cannot come home on high flow oxygen. So essentially right now we are rolling on a spare tire. Unfortunately the spare tire won't last forever so we need a better option.

Our only option to come home is for Parson to get a tracheostomy. It sounds like a really scary option - until you don't have any other options. This would also help us buy some time before a transplant. The doctors are also concerned because Parson is very low on the growth scale. She is using more calories to breathe than she can take in. So no matter how many calories we pump into her, she is burning it up. They have also discussed giving her a g tube while she is in surgery. This would give us a chance to "fatten her up" by providing extra calories at night while she sleeps.

The details haven't been worked out on the surgery yet, but it will more than likely be sometime this weekend or early next week -depending on the surgery schedule. After surgery, Parson will remain in PICU for 5-7 days. Then back to PCU for approximately 2 more weeks where she will heal & we will be trained to care for the trach.

I read a GREAT verse this morning and after the dramatic day - I know EXACTLY why.

"The Lord will fight for you; you need only to be still.” - Exodus 14:14

Sometimes in the midst of the chaos, in the midst of the crisis, in the midst of growing older by the minute - we just need to be still. It is so comforting to know that I don't have to fight -- cause this Momma is tired.

Thank you Lord for fighting my battles. I will be still.

Tuesday, February 19, 2013


The doctors have decided that Parson is a mystery. The last few days she has continued to have episodes of respiratory distress and the docs cannot attribute the episodes to anything in particular. They have used multiple medicines and pondered many possibilities. Little by little they are ruling things out. Today, her doctor said he would not consider us going home until the episodes lessened in severity and number. He said he would not even feel comfortable sending us home if we lived in Houston. As bad as I want to go home, I do not want to be in another emergency respiratory crisis away from Texas Children's.

I realized today that Parson has been in the hospital for a total of 36 days in her 7 months of life. I was a little discouraged today while posing a whole list of questions to her team of docs regarding her current status and the big elephant in the room - the lung transplant. I was explaining that I was a realist and could handle most anything if I just knew where we were in the process. The PA said something very encouraging. She said "Parson is going to be a healthy adult. She is using up all her sickness early." It is SO encouraging to me that nothing is impossible for the doctors here. They are incredibly knowledgable and confident. That is SO assuring. But the big problem for me is .... not knowing.

Not knowing when she is going to have another episode. Not knowing what is causing the episodes. Not knowing when we will get to come home. Not knowing when she is going to go on "the list" and need a transplant. Not knowing if lungs are going to available when she finally needs them.

I can easily lose sight of the big picture by getting caught up in all of the "not knowing". Honestly, I haven't thought much about Parson being an adult, most less a healthy one. For 7 months, I have been too busy making lists of questions for doctors to think about the future. I needed to hear that from the PA to help me rethink all of my "not knowing".

"So do not worry about tomorrow, for tomorrow will have enough worry about itself. Each day has enough trouble of its own." -- Matthew 6:34

As a confident Christian it is easy to admit that I have a problem of "not knowing", but I certainly know better that to worry. Guilty. Today I realized that all of my "not knowing" is just worry dressed up real nice. Corrie Ten Boom said it best... "Worry does not empty tomorrow of its sorrow. It empties today of its strength."

Friends, I can't borrow worries - I gotta have the strength for TODAY! He takes care of the birds & He will take care of me.

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? -- Matthew 6:25-27

Sunday, February 17, 2013

Completely overwhelmed.

Friends, I have been able to hold it together until today - but today I am completely overwhelmed.

As everyone gathered in the park to "Lift Up Blue" my phone sat on the table vibrating constantly. Buzz. Buzz. Buzz.

Right about 2pm, Parson started to struggle in one of her respiratory "spells". Buzz. I settled in to my normal role of rooting for Parson to take one breath after the other. Buzz. The respiratory tech asked me "How do you do this at home all the time?" Buzz. The nurse called for the PA. Buzz. The doctor paged the pulmonary team. Buzz. Buzz. Buzz.

Coincidence. I don't think so. Parson must've known she had a host of friends gathered for support. One Buzz after the other was a such a comfort for me to know that a prayer was being lifted for Parson Blue. God is so good. Today an earthly army dressed in blue to "Lift Up Blue". Team Parson suited up in Jasper, in Dallas, in Louisville, in Rockwall, in The Woodlands, in McKinney, in San Antonio and countless other towns. Whew. That is overwhelming.

Parson has settled down now and is happily playing in my lap. The doctors have ordered a few new tests to make sure everything is ok with new meds etc. Earlier today, I really felt like we had "turned a corner". Parson had a twinkle back in her eyes. Her grins are more frequent. And she is back to kicking her legs and playing. She must've known there was a party goin' on!

As I saw the video of the balloons floating up, I know each one of those was a prayer being lifted up. My favorite hymn is "It is Well With My Soul". The prayers and support felt today make it well with my soul. "When peace like a river attendeth my way. When sorrows like sea billows roll. Whatever my lot, Thou has taught me to say - It is well, it is well with my soul."

Maybe later today I can enjoy the pictures when the happy tears are gone. Your prayers is why I can be happily at peace in the midst of Plan B. It is well with my soul. Thank you friend.

"I thank God every time I remember you" - Phil 1:3

Saturday, February 16, 2013

The Cake Boss...

Yesterday cupcakes. Today wedding cake.

In talking to Parson's pediatrician Dr. Fidone yesterday, he described her health situation as walking through Times Square with a 12 layer wedding cake. He said it is so precarious, that none of us have any chance for error. (That is a fantastic analogy - and puts into realistic terms what we have been feeling for the past 7 months.) Some days are easy, one-layer cake days and then others days are the 12 layer Times Square cake days. Boys and Girls, It ain't easy being the Cake Boss!

A friend posted a great scripture on my FB wall earlier this week that I keep going back to. It is a great scripture for any day, but especially the 12 layer cake days.

"So do not fear, for I am with you; Do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." -- Isaiah 41:10.

In my transparency, you have to know that I have been scared multiple times along this journey with Parson. I have needed strength and I certainly have needed a steady hand. I don't know about you, but I think that scripture is GOOD STUFF. It speaks to me right here where I am. I need a steady hand for the 12 layer Times Square days! He is gonna strengthen ME and help ME. Stop fighting a fight that has already been won. Ahhh - just relax Jenn. HE has got this.

Our favorite fellow on the pulmonary team is here this weekend. Dr. Shipra Singh has been with us since the beginning of our journey. She is actually the one who gave us Parson's diagnosis on 10/2. We just love her. The critical care team has decided that we need to remain here in the PCU because Parson would "scare" them in a regular floor with the respiratory spells (crisis) that she has. They also want to change her formula again to add calories & protein because she is using so many calories to breathe. So our plan for the day is to rest, play, take meds, make the monitors beep and breathe.

For those of you planning to LIFT UP BLUE tomorrow - please know that my heart is SO full because of you. Thank you. I can't find the words, so please know that YOU ARE LOVED!

Friday, February 15, 2013


Kid President says.... "Cupcakes bring us all together. If everybody ate cupcakes, Ain't nobody be mad."

Yesterday we saw a little glimpse of the real Parson returning as she gave us a little smile. That made for a great Valentine's day. Parson also got some sweet valentine cards and goodies from the nice folks here on the 7th floor - one card from North Carolina, one from Maryland & one all the way from Newton, Texas. To top off Valentines, we had a good visit from great friends who brought dinner and....cupcakes!

Progress for Parson has been really slow. She has had a tough time this morning breathing and her doctors finally got to see one of the "spells" of respiratory distress. They have often seen her right after a "spell", but not in the midst- so that was a good thing. She is getting lots of therapy PT, OT, & respiratory therapy. Her lungs are still pretty junky & she still sounds yucky. They also tweaked her meds a bit this morning. Her doc said she needs to be weaned more from her oxygen & show him that she is stronger & free from the "spells" for a while before he lets her go home. The docs say she is a mystery because she is not responding to meds & treatment in the typical fashion. So I feel like we will be here at least a few more days.

On top of the other health issues, Parson is cutting teeth. Bless her heart - she just cannot catch a break. The first tiny little tooth finally cut thru. We have tried Tylenol & orajel - but she is just plain cranky.

I have one cupcake left, so I think she & I will split it. That will make us both feel better! Happy Friday to everyone - go find a friend & eat a cupcake. :)

Tuesday, February 12, 2013

Moving Day

It has been a busy day. Parson was served with eviction orders from ICU today. We moved up to PCU (progressive care) which is a step-down unit still within critical care. We are in a room by ourselves where Rodney & I will be able to stay the night with Parson :)

Parson is doing better but still has more work to do. She has had nothing to eat since 9 yesterday morning. Just IV fluids. There is a concern regarding her current respiratory status & her ability to swallow properly. A therapist came earlier and she got 2 oz of pedialite & they think she might be silently aspirating - so nothing more for now. She is scheduled for a swallow function test in the morning to see what is going on. Test results will determine if/when she gets to eat.

Since Rodney & I will be able to stay in the room with Parson now, we traded in our ICU waiting room recliners for a pull out couch! We also have a shower in the room which is a great improvement! 5 star! You all know by now that I have some really weird qwerks - chickens in the kitchen, a deodorant drawer, The Commodores to start the day etc. So in my transparency, I may as well let you in on another of my eccentricities. I love the towels here at Texas Children's Hospital. They are cheap, thin, skinny, rough & crunchy. There is just something about them.... They work wonders to exfoliate. They are super thirsty. They are plentiful. They make me happy. (My love for the towels is probably exaggerated just a little bit by the fact that showers were pretty scarce while we were in ICU.) Do you think the nice folks here at TCH would notice if I started my own little collection of towels to take home?

Most people would say the towels are the worst thing they have ever come across. I guess it is all about perspective. The towels have been good to me. They are right here when I need them and they do their job.

When I woke up this morning, I was a bit weary. Wondering what the day might bring - progress or setbacks? I had to remind myself - My God is just like these hospital towels....He is right here when I need Him. When I am weary, He makes me happy. His blessings are plentiful. God is so good to me. Knowing that, I am not ready to throw in the towel just yet.

"God is our refuge and strength an ever- present help in trouble." - Psalms 46:1

Monday, February 11, 2013

Strong and Courageous

Wooohoo! Almost four hours without the vent and Parson is holding her own! Your prayers and the pep talks seemed to have been just what the doctor ordered. The doctors have removed all of the IV sedatives & pain meds and the feisty spirit has quickly returned. Yes! Her throat is sore and her little voice is hoarse and now she is resisting the cords, treatment and IV's. I have never seen so much drool/spit in my life. This Momma is delighted to see the strong and courageous spirit return - even if it may make for a long night. All smiles my way-- no smile from Parson just yet, but it is coming.

I am also pleased to report that big sister was strong and courageous today as well. We got reports of a good day and a smiley face on the conduct report. :) BooYah! Way to go Darby! Many thanks to the fan club for kicking into high gear and making it a great day for Darby.

I gotta say.... It is absolutely amazing the support that you guys have provided to our family. Your prayers will be bringing us home soon and I am absolutely certain they have made all the difference for us today.

You are loved.

Pep Talk

Parson's ventilator has been on very minimal settings today and she has performed well on the tests today -- SO the plan is to extubate her again later this afternoon. I am very optimistic as are the doctors. We have been giving her little pep talks all day long. "Gimme a P. Gimme a A. Gimme a R"... I reminded her earlier that she was BORN TO BE AWESOME! (I stole that from Kid President - I have a HUGE crush on that kid! ) So she has been officially "Pep Talked". It is time to be strong & courageous.

I am hopeful and will post an update later this evening. The pep rally will be starting soon.

"Have I not commanded you? Be STRONG and COURAGEOUS. Do not be afraid; do not be discouraged, for the Lord you God will be with you wherever you go.". -- Joshua 1:9

Sunday, February 10, 2013

A day of Rest....

Well, Sweet P lasted about 2 hours off the vent yesterday -- then needed to be reintubated. :( So during rounds this morning they said today would be a "day of rest" for Parson - Pretty fitting for a Sunday. She has definitely earned it. Dr. Mallory agreed. He feels 80% sure she will be able to come off of the vent in a few days. (I am a hopeful optimist, so I didn't ask about the other 20%.)

Darby had a blast staying in a hotel and even took a swim last night to get some of her "willies" out. She is such a trooper. She will be headed back to Jasper with Nana & Papa later this morning. She charmed the folks here in ICU before she left and Parson's nurse even fixed her up with a new Kitty Kat headband. Darby is really trying to be brave even though her little world has been turned upside down. For those of you that are members of her fan-club, please say a prayer for her and give her a little extra love when you see her.

I am hopeful.

"Blessed are those who trust in The Lord whose hope is in Him" - Jeremiah 17:1

Saturday, February 9, 2013

She had a good night...

After four hospital stays with Parson, I have learned the beauty of the phrase - "She had a good night". There is just something about nighttime for Parson, every time she has gotten into significant respiratory distress it has happened somewhere during the night. So, it is music to my ears to hear and say .... She had a good night. Yahoo!

She had a good night! Yesterday they conducted a pressure support trial to allow her to breathe on her own to see how she could do. She handled it "like a boss" and lasted the whole hour. Today they did the test again twice and she did great. Her X-ray from today showed improvement as well. So- WOOOOHOOOO they just extubated and no more ventilator! So far she is holding her own and breathing on her own. Oh happy day!

Darby got to come see Par for a short visit today. I sure was glad to see her too. Here's hoping I will be able to report again tomorrow - "She had a good night".

"Every good and perfect thing is from above...." -James 1:17

Friday, February 8, 2013

"Blocking & Tackling"

Today's blog is from a guest blogger ... Darby & Parson's Daddy.

Hi everyone, wow I just don’t know what to say or do to thank everyone for prayer, support, financial gifts, offers to help with Darby etc…. Though no one has stepped up to feed the chickens. Oh well. Jenn has been down with Parson at Texas Children’s and I have been with her most of the time though I have been back these last two days to work. I’ll go back tomorrow and take Darby with me for a few days to visit baby sister. Hard to give an update really, a lot of times we don’t have any good news but don’t have bad news to report either. She is under sedation right now and ventilator is breathing for her but they wake her a little and lower the settings occasionally to let her breathe on her own. So far she is responding well to that, she’s strong like her mom.

I could probably hold 3 months worth of Sunday School lessons on what this has done for us emotionally and spiritually. I’m not a control freak but I’ve always lived the safe, comfortable life of a healthy middle class white guy. Very predictable, very boring. But I’m a different kind of Christian than I was a year ago. In fact I realize just how prideful I am. It’s just too easy to pick out the sins of sex, drugs, and rock-n-roll -- petty sins that I really don’t think God obsesses about like we do, when I really think the issue is self. Dealing with personal tragedy or illness, especially with a child, sends you through a myopic kind of fog. My struggle, my child, my stress, me me me, blah blah blah. I’m tired of that. I’m tired of being that kind of neurotic, self possessed Christian. That’s not very attractive to non believers. If nothing else I’ve learned that it’s not about me. It’s not about Parson. It’s about them. It’s about you, and us. God created us to live within a community environment and wants us to struggle and fight and laugh and dance within that environment. It’s about a Great God who allows us in our smallness to call him Father. To tell him that life isn’t fair but we’re going to trust him anyway.

So Jenn and I have discovered a peace not found in the common areas of life. We have experienced an unusual amount of peace, contentment, strength and its 100% from all the prayers from you. We can stand over the bed of our hospitalized infant and smile and share a joke, a tear.

But all of that aside, what is not lost on us is that you are all dealing with junk too. Some of you are dealing with illnesses of your own or loved ones who are down. There’s the daily struggle of “raising a child in the way that he should go” and some of you have work stresses, financial burdens, relationship struggles, hospitalized grandchildren and even others that are planning a joyful move into a new home. So I know that when you have given to us, or offered help or prayed or anything, I know that you hurt too. You are plowing through “stuff” or as my sunday school teacher Colin always calls it, the "blocking and tackling" of every day life.

From our hearts, thank you for shouldering some of this with us and going to the great throne on our behalf. I know for a fact that He listens, and that’s enough for me.


(Attached pic is of Dr. Mallory and Parson)

Thursday, February 7, 2013

Hectic Holy Water

Today has been quite hectic in lucky room 13. Parson has had the respiratory therapist "beating" on her chest and working on her vent settings. One roomie has had physical therapy, speech therapy, and an eye evaluation. And the other roommate has had surgery, sacrament & extubation. A little while ago, a priest came by and asked if I had requested a sacrament. I told him he was probably looking for our other little friend. At the same time we had an endocrine team of 6 docs, a chest X-ray, a holy sacrament and 3 different patient alarms going off all at once. This joint has been hopping! Ahhh, reminds me of home.

Par had a good night. Dr. Mallory showed me this morning's chest X-ray which looked worse on her right side. They think it is just a normal course where a sickness can get worse before it gets better. Her Xray looked really cloudy and the right lung looks partially collapsed. So they plan to offer additional time & support to see if things can improve. The respiratory therapist assigned to Par is earning her keep today. Yesterday they were able to remove the neuromuscular block from Parson, so she is no longer completely paralyzed, but able to wiggle a bit. As long as she is on the ventilator, she will remain sedated so she doesn't pull out the chest tube.

My mom (Gee Gee) and Rodney switched places for a few days so Darby could have a few "normal" days at home. Gee Gee has been busy making friends here and getting everybody lined out on how to take care of "her baby".

As the room got really crowded this morning I stopped to think about how all those tending to the kids are a part of the big "angel army" -- Special agents of the King. Even though we didn't get the best news with Par's X-ray this morning, I am very confident in the plan of the "crowded room". All these folks are here to help make things better. So bring on the hectic, bring on the holy water, and bring on the helpers. Come on in, we have got plenty of room.

"Fear not, I am the one who HELPS you" Isaiah 41:13

Wednesday, February 6, 2013

Holiday & Viagra

Ahhhhh. It was a calm and peaceful night. (Doesn't that sound like the beginning of a great story? )

Parson had a great night and is doing good so far today. They continue to tweak her vent settings and medicines. They are giving her a "holiday" from the muscle relaxer right now to see if she is ready to do any breathing over the ventilator on her own. So far she seems to be responding fairly well. These are all steps that are necessary to wean her from the vent. They have sent lots of cultures to the lab and done lots of tests to determine the source of her infection - but have found nothing so far.

Yesterday they did an echocardiogram that showed that the right side of Parson's heart was enlarged - so they started a medicine to help with that. The medicine is actually Viagra which is used to treat pulmonary hypertension in preemies and infants. (I thought you guys would get a rise out of that.) So far so good - because her levels really came down over night.

We got another roommate over night- a little fella about Parson's age. He is on a vent as well. So now there are 3 of us in our room. Our other friend is 16 years old who just had his 3rd brain surgery. We are settling in for the journey back to "normal".

Thanks so much for the prayers. We are beginning to see some slow steady improvements.

Tuesday, February 5, 2013

"Long Bumpy Night"

Wowzers. Parson pulled out all her tricks last night. About 8.30 pm. She took a nosedive that required that she be intubated and placed on a ventilator. I am so very thankful that we were here in the ICU for this procedure. The critical care team is so calm, controlled and confident. While on the vent, they will keep her completely paralyzed and sedated. The machine is doing all the work for her breathing while giving her body a chance to heal from the current illness. Today they will work to tweak her vent settings to get her levels where they need to be. They are carefully working to manage her oxygen, pH, and CO2 levels. Slowly they are creeping back waiting normal range.

Last nights doc was painfully honest and told us we were in for a "long bumpy night". She said her blood gas looked "horrendous.". Today's team has been more upbeat and optimistic about her status. As Kid President would say she is fighting this "like a boss".

We are on a very similar road that we travelled back during the Sept/Oct hospital stay. I expect that we will be here in ICU several more days before we see any progress.

The "Pray for Parson" orange arm band wearing crew has been SO busy these last few days. You are such a faithful crew. We are GREATLY encouraged by your prayers and support. Please keep them coming. "I thank my God on every remembrance of you" - Phillipians 1:3

Monday, February 4, 2013

Leaving on a Jet Plane

My oh my. What a night/day so far.

Sweet little Parson just could not shake the junk from her sickness and last night she took a nose dive. She woke around 1.30 coughing, laboring and having lots of trouble breathing. I worked to console her but just could not help her. Her oxygen saturations continued to drop so I upped her supplemental oxygen. When that didn't work, I woke Rodney and told him we needed to head to the ER. Next I called Mom and asked her to come sit with Darby.

When we arrived at the ER her O2 SAT was 75 and her arms and legs were blue. Scary stuff. Her white blood cell count was way high, her heart rate was high & her pH was also high. The staff at Jasper Memorial were quick, compassionate and attentive. They were able to stabilize her and then get in touch with the doctors at Texas Children's. They made the call to transport her to Houston via the kangaroo crew.

Once the crew came to JMH, they transported us via ambulance to the Jasper Airport where the plane was waiting. Thankfully, I was able to travel with Parson on her first plane trip. Ahhh, at this point I felt a huge sense of relief knowing Par was stable and headed to Houston. (Plus the sunrise was absolutely gorgeous through the little window of the plane.) We landed at Hobby Airport where the kangaroo crew ambulance was waiting to transport us to Texas Children's.

Parson is currently stable in PICU. They have upped the level of her supplemental oxygen. She has also gotten several different meds & breathing treatments. They have listened to her, poked her, stuck her and oogled & googled over her big blue eyes. For the last few minutes no one has bothered her and she has finally closed her eyes for a little nap. Her nurse today is named Nick. He has 6 kids of his own and he has been with TCH for 13 years. Trust me- this fella has got things under control.

A couple of things of note...
1. A BIG thank you to my Mom for answering the call of the "wee hours babysitting service" & to my sister for meeting me here in Houston until Rodney could get here.

2. For those of you that liked the previous "deodorant blog" - we left in such a hurry this morning, I didn't even stop at the deodorant drawer - So, no tropical paradise and no 3x cooler & fresher under pressure today. Oh well, surely I'll smell better tomorrow. :)

3. Shortly before Christmas I underwent genetic testing to see if I had the same genetic mutation as Parson (by chance if I had passed it to her or if I was possibly a carrier). Results came back today that I do NOT have the mutation -which is a BIG relief. Whew - This means Darby will not have to undergo any testing.

4. I really gotta get one of those Lear jets. That was a VERY quick trip -we were in Houston before I even buckled my seatbelt. Thanks kangaroo crew.

5. Thank you Lord for sweet sunrises, precious family members, great doctors & nurses, angel armies, and praying friends.

"He will keep in perfect peace whose mind is stayed on thee" - Isaiah 26:3

Saturday, February 2, 2013

Dead Tree

When we bought this house, we began the remodel process while we were living 1/2 mile down the road. We must have made the trip back and forth one million times. Each time I turned into the driveway, I would look at the same dead tree and think that we needed to cut it down as soon as we got done with the interior remodel. Well, it is a good thing it took us a while with the interior remodel because you have to know my surprise one day when I turned into the driveway and discovered that the dead tree was BLOOMING!

Two years later I love that little tree. It is beginning to bloom now. It is just such a mystery. It sheds all of its leaves and gets really ugly looking in the winter. Then before you know it - without a single leaf in sight, the silly tree is busting out with blooms.

I am a lot like that little tree. It is a new season around here and new things are popping up out of nowhere. Guess it is a good thing that God didn't chop me down during the remodel process.

"Behold I make all things new" -Revelation 21:5

A Promotion

This morning was a beautiful Saturday morning. The sun was shining. The birds were chirping. The chickens were busy laying eggs. Rodney cooked a breakfast feast -- bacon, fresh eggs, biscuits & gravy. We sat down to eat and he asked "is it still surreal that you aren't getting up and going to work everyday. I mean turning on your computer and kids coming in and everything?" Complete silence.....(you could hear the crickets)........Tears.

It hits me like a ton of bricks everyday- sometimes multiple times a day. I absolutely loved my job as a school counselor. I loved getting up everyday and giving 110%. I loved helping kids and parents. I loved working with "future grown ups". I loved helping teachers. I honestly don't think I could have ever given that up.

God has a funny way of taking care of things. Before school started this year, I had taken a new job as the director of state and federal programs. A promotion with more money and more responsibility. But with Parson being sick, I never got the chance to fall in love with the new job.

So here I sit today bawling like a baby because I don't get to wake up everyday and put on work clothes and go "grind it out" for 8+ hours a day at Jasper ISD. Absolutely nuts. Most people would give anything to be a stay at home mom. There are some things I just don't understand. Why did God give me a new job only to have to turn around and give it up?

Well really, I do know the truth .... He was checking my faith status. He had a greater promotion in store for me - the job as Parson's momma. He knew when He knit her in my womb that I would be up for the task. (I'm still not convinced I am qualified, but evidently He thinks I have got what it takes.) It is not more money but it is definitely more responsibility.

Last night was one of those nights where the "more responsibility" kicked into overtime. BEEP. BEEP. BEEP. We started the night with the monitor alarming because her heart rate was too low. (Insert a small nap here) Then her ears were hurting and she needed some Tylenol. (Insert a small nap here) BEEP. BEEP. BEEP. Then the monitor probe went out on her foot and needed to be replaced. (Insert a small nap here) Then she had diarrhea from the antibiotics for her ear infections. Then she needed a bottle. Then her ears were hurting again, so we visited from about 3am-4am. I could go on, but you get the picture.

In the wee hours, I couldn't help but think how bizarre this whole situation is. Just when I thought I had it all figured out, along came Parson (who is 1 in a Zillion - as the genetic tests proved) to show me. We are learning this thing together. I guess you could say it is on the job training. It is pretty simple --she tells me what to do and I do it. All jokes aside - I have never worked harder in my life.

It is still a beautiful Saturday morning. The sun is still shining. The birds are still chirping. And Darby just ran in the house and announced "I JUST SAW A CHICKEN LAY AN EGG IN MY CLUBHOUSE" (While she contorted her body to mimic the chicken). And I'm sitting here having a pity party crying about what used to be... HELLO JENNIFER! Get rid of the stinkin' thinkin' and get on with the day. So I hereby declare an end to this pity party.

I just can't question it. I have got to trust Him. Like it says in Isaiah 55:8-9, "His ways are better than my own". I have a feeling that verse sums up this whole bizarre situation. I'm pretty sure that this Plan B is all about getting a hard headed, control freak like me to give it up. (I gotta admit hard heads like me don't go down without a fight.) Oh Jennifer, when will you learn? His ways are better. Hopefully with a little more on the job training I will be that much closer to being "happily at peace in the midst of plan B".

Well, I gotta get back to work, the boss is calling - she just ripped the oxygen off her face and she wants a bottle.

"His ways are better". Peace.

Friday, February 1, 2013

Give Blood, Eat McNuggets & Get a good Pediatrician

While sorting through some medical paperwork this morning I ran across a piece of paper that reminded me of 10/2 (the day Parson was diagnosed). It had been a grueling few days in ICU of "touch and go" situations related to her condition. We were absolutely exhausted, her levels were all out of whack and it was the day we would meet Dr. Mallory (the transplant doc).

We walked across the bridge to get a drink and I had a meltdown. It was on 10/2 that I scribbled down the 3 things written in today's blog title on the back of a piece of paper.

-Give Blood.
-Eat McNuggets.
- Get a good pediatrician.

The night before we had been selected to stay at the Ronald McDonald house so we gave up our comfy chairs in the ICU waiting room for the night. About 4.30am my phone rang and I woke up in a complete panic. It was Parson's nurse. I yanked on my clothes and was 1/2 way back to ICU when I realized what she had just said. They needed signed consent to take her to surgery for her lung biopsy later that day. I gave the surgeon my autograph and then stopped and caught my breath. Par also needed to receive platelets, so they needed my autograph for that as well.

Later that morning, in a moment of clarity, I was extremely thankful for these things: The person that donated blood/platelets for Parson. A bed and shower at the Ronald McDonald House. And Dr. George Fidone & Dr. George Mallory.

Fast forward 6 months... I would have NEVER imagined that 6 months later we would be staring a lung transplant square in the face. I would NEVER have imagined that I would know exactly which room at the Ronald McDonald House has the best shower - (The shower in rm 11 will wash away all your worries.) And I would have NEVER imagined that a host of doctors and nurses would become my new coworkers on a quest towards a happy & healthy Parson Blue. I am so grateful that Dr. Mallory and his crew and Dr. Fidone are so good to me and answer every one of my stinking questions - even when I have a new list everyday.

I was amazed when I logged on to FB tonight and saw that our friends at First United Methodist Church in Jasper are hosting a blood drive next week in honor of Parson. Ahh, Jasper Texas - you never cease to amaze me. I am so grateful for my hometown.

Last night, we received another call for lungs but in the end Parson didn't get the lungs after all. It was the closest we have come yet - (they administered some of the pre-surgery meds and the surgeon was here at the bedside). I have complete confidence and know without a doubt when the time is right, Parson will get her new lungs. Please continue to pray for protection from sickness for Parson as well as "happy" blood levels etc. so that when the time comes, she is ready to "go".

"For I am confident of this very thing, that He who began a good work in you (me, Parson Blue) will be faithful to complete it until the day of Christ Jesus." - Phillipians 1:6

The moral of the story is this... Please eat some McNuggets and support the Ronald McDonald House, donate some blood to save someone's life and hug your pediatrician or healthcare worker next time you get the chance. Tell 'em PDiddy's momma sent ya.