4x

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.

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.

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

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.

Mystery

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

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

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!