Tuesday, April 30, 2013

May Flowers

April showers bring May flowers...

I sat here tonight thinking about how full my heart is. April did prove to have quite a few showers, but moving on to May reminds me that I have lots & lots of beautiful "flowers" in my life.

I have been thinking about one of the most beautiful "flowers"a great deal lately. Our family has been blessed with a FANTASTIC kindergarten teacher for Darby who loves her for her spunk and has spent countless hours investing in "growing" my child. Thank you Sharon Henslee for reinforcing the ABC's & 123's but more importantly for loving my kiddo when her world has been turned upside down. I appreciate your heart. I can affirm that you are doing something right when my kiddo comes home and wants to "play" school. Thank you Mrs. Henslee. Darby thinks you hung the moon and I think you are a rock star!

My hometown continues to make my heart full by the many folks who have also been "flowers" to our family. The Jasper Newsboy has a great article in today's edition about the Jasper Community coming together for Parson Blue. Wow - my cup overflows. Thank you friends for filling our cup.

Today, my favorite "flower" played hookie and came for a quick visit. Rodney, aka SuperDad has been an absolute champ while we practice our "man to man" defense parenting. He has conquered laundry, sight words, stomach viruses, cooking supper, bath time, yard work, strep throat, dress up time and SO much more without the first complaint. All of that and Superman's cape hasn't shown the first sign of a rip, tear, or tatter. It was great to see him today. I am crazy about him and so in love after 18 years. Dog gone, I have got it good. My heart is so full.

MayDay! MayDay! MayDay! After 87 days in the hospital, having a really sick kiddo, not sleeping in my own bed, and really missing my family and all the comforts of home -- somehow I am blinded by the "flowers". My heart is full of good cheer. In spite of my current circumstances, and thanks to all of the "flowers" in my life -- I am the goofy one in room 6 that is skipping around the May pole.

"A cheerful heart is good medicine..." - Proverbs 17:22

Sunday, April 28, 2013

The Waiting Game

Parson was doing well enough to get the boot out of ICU, so we moved again. Back to the PCU (progressive care unit) - 7th floor. We have had a few other offers for lungs - the latest one overnight, but they just were not right. (That makes offer #6 - for those of you keeping track.). The right lungs are coming soon - I just feel it!

With only two more days left in April, I want to insert a public service announcement here ... RECYCLE YOURSELF - BECOME AN ORGAN DONOR.

Parson's picc line infection has cleared and negative cultures have returned on all tests. :) She has been fever free & infection free for over a week now. Her CRP level has also improved. We are carefully watching her hemoglobin level to see if she needs to be transfused. (She may need some of that good FUMC Jasper blood.) The docs do not want to transfuse unless absolutely necessary. They are gradually weaning her methadone & Ativan and she is slowly coming back to life a little more each day. I bet smiles will return soon.

As you can see in pictures, Parson has made significant improvement from the "failure to thrive" diagnosis she received back in February. In fact, they trimmed back her diet this past week because the cheeks have officially taken over her face.
Over the last week or so we have been able to enjoy some great family & friend time. Thank you to each of you who are "carrying" us with your prayers, calls, texts, and visits. I have included a few pics below of the waiting game...

Sunday, April 21, 2013

The Perfect Storm

Saturday night was such a whirlwind when we got the last offer for lungs. I stayed up with Parson until around 12:30am because she was really fussy & having some tummy issues. Once she settled, I went out to my recliner in the PICU waiting area and pulled up my blanket - at 12:37 am my phone rang.

The transplant coordinator was on the other end. She explained that they were 90% sure they had lungs for Parson. Woohoo! She told me that they had requested one more blood gas on the donor lungs and that those results would determine whether our surgeons would be put in the air soon. She also stated that the process would be moving quickly and that Parson would go to surgery somewhere between 2-4 am. The surgeon would be coming soon to get my consent for surgery. The coordinator said she would call me back after the 1.30am blood gas to update me. I called Rodney and quickly went back in to Parson's bedside.

The nurses are so dang fun - they actually get more excited than I even did as a parent. They are really rooting for this to happen. (I was still holding on to the fact that there was a 10% chance that it would not work out.) They had already began pre-surgery preparations - drawing blood tests, giving special meds etc. During this short interim, I was anxiously awaiting to hear about the 1.30 blood gas results. I looked up and saw Dr. Heinle, the surgeon. Wow - the coordinator wasn't kidding when she said this was gonna move fast. (This is further than we have gotten on the other offers.)

At 1:42am, my phone rang and the transplant team member said the offer had fallen apart. Blood work that they had just pulled showed that Parson's CRP level was elevated and the increase was unexplained at this time. It would be too risky to transplant, so they turned down the lungs. Uggh - punch in the gut.

Our "hurry up" just came to a screeching halt and we are right back to "wait". Honestly, I don't understand why it is one thing and then another that is delaying this process - a picc line infection, a fever, an elevated CRP level & low hemoglobin.

Now that the smoke has cleared, I continue to play the events of Saturday night over & over again in my mind. My mind kept going to the "what if's". So I picked up my Jesus Calling devotional book to check out what April 21st had to offer. The opening statement was for me .... "LET ME CONTROL YOUR MIND. The mind is the most restless, unruly part of mankind. .... When My spirit is controlling your mind, you are filled with Life and Peace."

"For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace." - Romans 8:6

Yep. Restless & unruly was a perfect description of my thoughts after Saturday night fell thru. But as crazy as it seems, I cannot explain the feeling that I have about the whole process. I have an incredible peace - one that is not of this world. Sure, my mind wanders, (I'd be lying if I said any different) but the deep down peace hasn't wavered. Gotta put off the "hemoglobin & CRP's" of the flesh in order to find life and peace.

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." - John 14:27

I am not troubled and I am not afraid. I have got PEACE, LOVE & PARSON BLUE.

Tuesday, April 16, 2013

A Blind Assurance

Night before last, a call came in the night, but the lungs were not right. Then yesterday afternoon another call came - and those lungs did not pan out either.

I have to say, this kind of waiting is TEN times worse than waiting on a baby to get here. Earlier in this process I kinda compared it to waiting on a baby - everybody is "ready" but nobody knows when it is really gonna happen. Somehow this waiting is super charged. You know - hurry up, wait, make tentative plans, wait, then repeat. Madness.

I can't help but think about chasing our crazy chickens around the yard. Trying to round them up is quite a task - just when you think you have got things headed in the right direction - the chickens change directions.

Parson's infection has responded well to treatment so that makes her a good candidate to transplant at this time. The transplant team came through this morning and said the fact that we have gotten multiple calls is a very good sign. They have a little "organ fairy" in their office and they all agreed that they would give her a little jingle later today and happily work night & day to make it happen if the "right" lungs became available. The team's caution to accept nothing but the best lungs for Parson provides me with an extra measure of confidence in this whole process. It makes the "hurry up & wait" so much more bearable. I am confident in the process.

2 Corinthians 5:7 says ... "For we live by faith, not by sight." This anxious Momma in my human spirit paces and worries - but I know this plan B is so much more about faith than sight. Most of the details just don't make sense - but that is what faith is all about. A blind assurance.

"Help me live by faith, not by sight."

Sunday, April 14, 2013

Elation to Deflation

Lesson learned... never say things are boring...because things can change pretty quickly. Once again we found ourselves taking a ride on the Plan B roller coaster.

Friday we were transferred back to PICU because Parson's heart rate was high once again and unable to be maintained without sedation, so we made the journey back downstairs. She has been in much better shape with medication on board and her heart rate has returned to a normal range.

Friday wasn't boring & Saturday proved to be even less boring. We got a call for donor lungs about 6.30 pm last night. By the time we made plans and mobilized forces, the offer fell apart. We learned that Parson has an infection in her PICC line that needed to be treated before she can receive new lungs. I have complete confidence that things worked out just as they should last night. Those particular lungs were just not meant to be. We went from elation to deflation over the course of a few hours and that is quite a ride to take. Whew. I appreciate all of the prayers that were offered up for our family and on Parson's behalf. It was not in vain.

I have complete confidence in His divine plan. “Blessed is the one who trusts in the Lord, whose confidence is in him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green.
It has no worries in a year of drought and never fails to bear fruit.” - Jeremiah 17:7-8

Tuesday, April 9, 2013

FAITH & fear

Now that all of the pre transplant "work up" and evaluation is complete, things have slowed down a bit. I hesitate to say it out loud, but it was almost boring for a bit yesterday. I don't know if boring is good or not. I certainly appreciate the lack of medical drama from Parson --but in the boring moments, my mind goes places that it should not.

I got a great reminder of where my mind needs to dwell in those boring moments. My dear friend gave me a plaque that says "LET YOUR FAITH BE BIGGER THAN YOUR FEAR".

In thinking about faith, I think a lot about a BIG faith that is mentioned so many times throughout scripture. A David & Goliath big... A Daniel in the lions den big... A Shadrach, Meshach, and Abednego big... A Moses big... Those fellas had to have been scared out of their minds in the midst of their circumstances. Definitely no shortage of fear in their stories. They certainly could have let their minds wander to the "boring", fearful places, but instead they held on to a BIG faith that carried them beyond their circumstances.

You know, there is no shortage of fear in my current circumstances. But the same BIG faith of David, Daniel, Shadrach, Meshach, Abednego and Moses is mine too. The fear is real & the faith is too. I can allow my mind to wander into boring fear, or I can claim BIG faith.

When I look around-- I have got a lot to be thankful for. I am not in a burning pit. A lion isn't gonna eat me for lunch. There are no burning bushes on my path. I do have a big giant to take down, but I have a BIG faith and confidence in God's plan.

Monday, April 8, 2013

The Dream Team

After 5 days in ICU, we transferred back to PCU (progressive care) last night. Parson is off most of the sedation drugs and is beginning to come back to "life" again. Her heart rate is much more stable & her breathing is improved also. I am expecting smiles to return anytime.

Last night was a good night & today has been a good day. It has been a while since I was able to say either of those phrases. Ahhh - feels so good.

Dr. Fidone, our pediatrician from Lufkin, popped in to check on PDiddy today and he and Dr. Mallory met for the first time. It was a Kodak moment and it made me so thankful to have "The Dream Team" all together in one place. I am considering getting a cardboard cutout of Dr. Fidone for the hospital room, because Par has been on her best behavior the last couple of times he has checked in. She has good days when he is around.

Rodney & Darby came this past weekend for a visit. Darby learned to blow bubbles with her bubblegum and has been practicing nonstop since. We went to Hermann park to ride paddle boats & eat snocones. It was a gorgeous day Saturday. Snocones + bubblegum + paddleboats = GOOD DAY!

Pic #1 - The Dream Team
Pic #2 - Darby with a snocone in Herman Park this past weekend
Pic #3 - Parson "brushing" her teeth earlier today

Thursday, April 4, 2013

The List

Hurry up and wait.
Wait. Wait. Wait.

As of this morning, Insurance approved the transplant and Parson is officially on "THE LIST". Our waiting game has become official as we await new lungs from a donor. Donor lungs must match PDiddy in height/size requirements and blood type requirement. Some kiddos have waited one day for lungs, some have waited up to one year. The last kiddo here at Texas children's waited about 3 months. You just never know.

I just can't help but think of the fantastic passage in Isaiah that talks about waiting.

“Have you not known? Have you not heard? 
The Lord is the everlasting God, 
the Creator of the ends of the earth.
 He does not faint or grow weary;
 his understanding is unsearchable. He gives power to the faint,
 and to him who has no might he increases strength. Even youths shall faint and be weary,
 and young men shall fall exhausted; but they who wait for the Lord shall renew their strength;
 they shall mount up with wings like eagles; 
they shall run and not be weary; 
they shall walk and not faint.” Isaiah 40:28-31

These great words apply to our current circumstances on so many levels. The waiting...The weariness...But those are our human concerns. HE doesn't grow weary and HE increases strength. HE gives power to the faint.

My whole perspective has changed recently knowing that Par was headed for transplant. I have got a sick kiddo waiting for a transplant, but in order for that to take place, another mom is going to undergo amazing grief & sadness with the loss of her child. Please pray for their "Plan B" that will come in the grief of losing their child. I can't stop thinking about it. I also think about the whole harvest process about them going to get the donor lungs. They have gone to both coasts and far north to get organs. They actually send a team of specialists from Tx Children's to go and get the donor organs. The same God that is the creator of the ends of the earth (like the Isaiah passage says) knows when and where and if lungs are gonna be available. His understanding is unsearchable. Even when I don't understand, He does. The whole process absolutely blows my mind.

April is organ donation awareness month. So I want to make a plea for you to consider organ donation if you have not already. It is the ultimate unconditional gift that you could give someone that could never repay you in any way. Please also make sure you make it official and let your loved ones know about your wishes. Getcha a cool red "DONOR" heart on your drivers license - all the cool kids have it.

Well, I gotta run, I gotta happy dance to do.

Dance With the One Who Brought Ya

The Medical Review Board at Texas Children's met Wednesday and unanimously approved Parson to be listed for transplant. We signed the informed consent for transplant and completed the last blood work. The only thing we are waiting for is insurance approval of the transplant. Dr Mallory has written a letter of medical necessity to substantiate the need for transplant to our insurance company. The transplant coordinator hopes to have her "officially" listed Friday - or by Monday for sure.

In the meantime, we have reacquainted with our friends in the PICU. In order to keep Parson's heart rate down, the doctors have had to keep her pretty sedated. She has had a few rough nights, but today was a much better day.

This morning, Dr. Malory arrived around 5.30ish for "dance lessons" to tweak the vent settings to help Parson and her vent "get it together". He describes the relationship between patient and ventilator as one that is much like two dance partners that must be completely "in sync". Dancing With The Stars -ICU ventilator edition. He must've stayed at the bedside for three hours or more adjusting the settings until he was satisfied with their "dance". (On the final performance, Bruno & Carrie Ann both gave them perfect 10's, but Len said he saw a tiny lift.) Like they say, you gotta dance with the one who brought ya.

Thanks so much for the prayers, texts, FB comments, messages etc. Honestly, as Par's condition has changed and we have had the string of bad nights, I have had trouble keeping up with responding to each one - so I apologize. This momma has been busy this week doing the "transplant two step". Please know that you are loved and appreciated even if I don't get the chance to respond.

Stay tuned for the next episode of dancing. Hope you enjoyed the show...

Monday, April 1, 2013

Ain't nobody got time for dat

Count it all joy, my brethren, when you meet various trials, knowing that the testing of your faith produces endurance. (James 1:2–3)

A lot can change in 24 hours. We had quite a storm here last night - literally & figuratively.

I pulled myself together and decided that was enough of the water works -- "Ain't nobody got time for dat". We got bigger fish to fry.

Parson has had another rough day & night. Overnight, they transferred her back to PICU because of her increased work of breathing & high heart rate. After assessing her, Dr Mallory said he plans to have an expedited Medical Review Board vote to get Parson listed for transplant ASAP. He doesn't want to wait until next week after all. Insurance approval is in the works and I have been working with the transplant coordinator to get all necessary paperwork completed.

Please say a prayer that Parson is able to stay "well enough" for transplant. Pray for available lungs when the time is right. Pray that God's mighty hand moves in all of this.

And my God will meet all your needs according to his glorious riches in Christ Jesus. —Philippians 4:19

For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. —2 Corinthians 4:17