I have been settling into my new routine as "Primary Medicine Giver". We have a two part approach - the required transplant Meds and the weaning Meds/narcotics (which we have a complex weaning schedule for). Within the first day or so, I knew something wasn't right and called her doctors. We had a major medicine "mix up" where one of her meds (methadone) was dispensed at twice the strength it should have been. As a result, Parson slept through TWO different birthday parties and the majority of the first week home. I am pleased to report that she finally woke up and came out of the FOG. It took about a week to get her to wake up & return to smiles, but now she even giggles out loud for Darby.
We still have about 2-3 more weeks until she is completely weaned from the methadone, Ativan & clonidine, but we are working to slowly get rid of those meds. Withdrawal is a BIG concern still, as the last small amounts are often hardest to shake for little "junkies" - that have been habituated for such a long period like Parson. This process brings new meaning to the term fussy baby. Bless her heart- she is such a little trooper.
We spend a great deal of our time at Texas Children's. She has bloodwork and clinic appointments twice a week and we have also spent quite a bit of time getting medicines straight with her doctors, nurses and the pharmacist. In addition to the clinic schedule, she has also had both physical therapy and occupational therapy. Both therapies will help to make up for some lost time due to her severe illness and developmental delay. The OT noted in her evaluation that she charted Parson as a "strong 7 month old". All of her therapists are very encouraged that she is already gaining strength and showing improvement.
After discharge, she developed a weird situation where she has not been swallowing anything - not even drool. This is very concerning for us, but also a HUGE mess. We feel like it is related to her medicines as she is producing copious amounts of drool - I mean MAJOR amounts of cold, wet, thick slobber. (Sorry, I know that is TMI for some of you.) Her doctors are conducting various tests to determine what is causing the issue. She is scheduled for a swallow study tomorrow to check things out. Speech therapy may be added to our repertoire depending on the findings of the study.
Yesterday she had a bronchoscope where they sedated her (term used lightly as they used twice the normal amount of sedatives and she still wasnt "out") and went down to check out her new lungs. They also took biopsy samples and used a "wash" or lavage. Everything looked great and took place with no problems. Her lung tissues appeared very alive & no signs of rejection - Thank you Jesus. They also took a quick look at her esophagus because of the swallowing issue, but nothing in particular was noted. During the procedure, they placed an impedance probe that will be left in place for 24 hours. This will record any amount of reflux that she may be having. She is not a big fan of the tube in her nose going down her throat. It is making her gag more than usual. And she has been gagging quite a bit as a result of the not swallowing issue.
We have begun to settle into our life as a little family once again. We have a little, one bedroom apartment (that Darby says is HUGE!) that we pay a daily rate on to the fine folks at Kingwood Church of Christ. We got the apartment through the apartment ministries program. Our housing situation is another great example of Plan B. Our original plans were to go to The Ronald McDonald House, but it was full - (No room in the Inn). The apartment we have is close to the hospital, has tons of sidewalks for us to stroll & two swimming pools. I sure am glad we are comfortable in Plan B and trusted God to take care of our lodging too -- another great testimony of a fishes and loaves situation for us. He always has a much greater plan than we can ever imagine. Can I tell you about God's faithfulness again?
"It is The Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed." - Deuteronomy 31:8
I promise that I haven't intentionally left you guys hanging without updates and pictures. We have been really, really busy shuttling back & forth to the hospital for appointments. Parson also has quite a mixed up routine/sleep schedule after being in the hospital for 5 months. Her nights & days are really mixed up - that is why I am writing this blog at 4:30am (while she fusses & talks in the background -guess she is dictating to me exactly what to report.)
The highlight of this past weekend was taking Darby across the street to Reliant Stadium to The Ringling Bros & Barnum Bailey Circus. Wow! We had a ball! Parson stayed back at the at apartment with Gee Gee and evidently protested the whole time.
Whew. I am still amazed that we are where we are - I pinch myself quite often. Life is so very precious. He has made me glad. Thanks for taking this journey with us - it is nicer because you are here with us. Your prayers and faithfulness have given strength to us when we have needed it most.
"The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love." - Zephaniah 3:17.
The Birthday Girl
On a stroll