Poppy is doing remarkably well!! Her vitals have been rock solid!!! Her anti-rejection medication levels are also becoming more predictable as well. We are about half way through the prednisone taper, and she is now off of her dilauded drip, meaning her dose is now given through her ND tube just like her other meds. We have also been able to get her meds schedule down to four main times 6am, 2pm, 6pm, and 10pm for all of her meds except the dilauded which will be due every 4 hours as we continue the wean at ‘home.’ Poppy seems to be tolerating this med schedule overall-the trick is we just have to go slow, so at certain hours, it will take an hour to give meds. We are just soo thrilled she is tolerating it so far! Much better and more sustainable than every 2 hours!! Thank you Jesus!!
Poppy has been rockin the OT!! She is starting to be soothed by her binky and even got to try a drop (literally a drop) of formula and swallowed it!! She tried the binky trainer (binky with syringe of formula attached for practice taking volume through her mouth) and gagged a bit but gets to try again tomorrow!! This whole eating orally will be quite the process for our girl, as she never has before because of being so sick, but she is doing tremendously well for where she is at. It’s a delicate process because the last thing she needs is to be vomiting her anti rejection meds…it will take time, but is already a work in progress! She also continues to track and move her head around appropriately. Her neck strength is improving as well. We even got a little hint of a smile!! Loving it!! 🙂
Poppy has also earned time out of her room and off the monitors!! She can go 30min at a time, up to 3 times a day!!! Absolutely amazing is the feeling to be able to stroll her around untethered!! It’s…wow….in the fewest words, a dream come true. Because she is immunosuppressed and we all know how easy it is to get sick in the hospital, she only goes out in her ‘bubble.’ It’s a rain shield- it may sound overboard, but it isn’t. The quarantine started May 31 and Poppy isn’t allowed any visitors until her immunosuppression is in a place that allows well visitors. We have become ‘those’ parents, but we have no choice for now, this fresh out of transplant- we must do our best to protect this precious gift of life we have been blessed with.
This past week has been super busy, as we’ve been meeting with pharmacy to learn her meds (what they are for, how to draw up and administer), transplant coordinators to learn about rejection and what to be looking for, CPR class that’s required before discharge, and feed pump training. We gave learned soo much.
Dr. Law is thinking Poppy will be ready for discharge to our apt next week!!! Wow!!! Hallelujah!! Praise The Lord!! It just doesn’t seem real!! Oh we are so elated beyond words that the day when we can all just ‘be’ as a family in our apt is fast approaching. It is truly a miracle…miracle isn’t even enough to describe all that this means- there just aren’t words.
How long we must stick around here can really vary-it really depends on how she does. So far there are no signs of rejection! Woohoo! Praise the Lord!! Once discharged, Poppy will have lab draws, rejection echos, and EKGs twice a week. We will be recording her vital signs, keeping track of her ins and outs (what she consumes and what she expels), and be in constant watch for rejection. These appointments will gradually get down to once a week, then once every two weeks, once every 3 weeks…and so on. We know God has all of this, so we trust His perfect will to prevail and constantly pray that we will continue to let Him guide our steps.
Monday we do what’s called ’24 hour care’ where we do everything we will be doing at home under the watchful eye of a nurse. We are exhausted but SOoo excited!! We get to be ‘home’ as a family?!?!?! Unbelievable!! In the past, we have had many days wondering if God would ever have Poppy here, to this point…it is soo awesome to be in it and attempt to take in the amazing miracle He has so richly blessed us with. Please pray that we pass our 24 hour care and that Poppy continues to progress and is discharged next week!!
Also, please keep Poppy’s single ventricle buddies Adrian, Kyle, Wyatt, Victoria, Christian, and Oskar in your prayers as well. Adrian and Poppy are a few days apart and were both born with HLHS. Adrian was recently listed for transplant and is currently fighting a respiratory infection which he must be cleared of before he can accept a heart. Please pray he clears it and that a heart would become available for him in God’s time. The others are quickly outgrowing their shunts from their first surgeries (most of them had some version of the Norwood), and are fast approaching their next procedure, the Glenn. These babies really need more time to grow and be in better health to be in the best place for surgery. Thanks in advance you prayer warriors!! God bless!!!
Prayer for Spiritual Strength
14 For this reason I bow my knees before the Father, 15 from whom every family[a] in heaven and on earth is named, 16 that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, 17 so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, 18 may have strength to comprehend with all the saints what is the breadth and length and height and depth, 19 and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.
20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.