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

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.

"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

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

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.

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.