We have been out of the CICU since Tuesday afternoon and Poppy is doing great!!! Praise The Lord!! She has been able to rest really well, her numbers have been awesome, and she has no signs of rejection so far!!! Woohoo!! Hallelujah!!!
There is quite a difference between the CICU and the floor, and we are still trying to find our way in this new setting after being in the CICU for so long. Overall, the switch is a good thing, as now we are learning how we are to care for her at home. I’ve been able to change, hold, do spa day whenever I want and I’ve been practicing taking vital signs and administering medications (under supervision of course) since we got here!!
Right now the main things keeping her here:
-Dilauded drip-currently at 9 (has been
as high as 12) needs to be less than 7 to switch over to oral dosing in order to continue weaning at home. So far she is doing great at the wean!! Slowly but surely….
-Stable immunosuppression medication levels- they keep a very close eye on these levels, as too low could invite rejection, and too high could be very dangerous. So far it has been somewhat of a challenge getting the ideal levels, as one of her anti seizure meds (phenobarbital) messes with the metabolism of one of these drugs (cyclosporine). They are currently weaning the phenobarbital and going up on her other anti seizure med (keppra) as a solution. We are praying that the keppra is enough to take care of the seizures.
-Tolerating feeds- right now she is at full continuous feeds at 26 calorie formula going at 24 ml/hr through her ND (nasal duodenum/small intestine) tube. The goal would be to have her tolerating these same feeds only through an NG (nasal gastric/stomach) tube instead, so that eventually we could work on bolus feeds (like feeding a certain amount of times per day) instead of continuous. We will see what happens. Really praying she will show us she’s ready to try NG feeds, as it is more ideal to go home with.
-Training- Brad and I have training all week with a pharmacist to become experts on what medications Poppy is on, how to draw them up and administer, how often they are to be given, and how to keep track of everything. We will also meet with the transplant coordinator to learn how to recognize signs of rejection, know when to call the dr. and record vital signs. Poppy currently gets meds just about every 2 hours-not the same ones every 2 hours, but she is on so many, to give as many as possible at once is often too much volume for her- she gets gaggy and vomits. At certain hours, when the volume of meds is higher, just giving the meds can take an hour- she needs them administered that slowly to avoid vomiting. We are praying that before we are discharged, Poppy will show us she can tolerate taking more meds at once so we can be on a more sustainable schedule than every 2 hours. It will take time, and she won’t always be on so many meds. As she grows and the more time passes from her transplant, the meds will taper down a bit.
-OT/PT- occupational and physical therapy have been great! We will have a developmental plan for Poppy early next week! It’s been fun practicing normal baby stuff with our girl! She is showing us things that were not possible for her before her new heart and vp shunt…. It’s absolutely amazing…she continues to surprise us!! 😉 God is so good.
I think it’s safe to say that Brad and I are exhausted-exhausted is probably an understatement lol ;)!! It’s like we joke about how we’ve aged in the last 6 months- emotionally and physically. Even running out for groceries we’ll see some super nice cars and find ourselves commenting on them and then realize they are totally mid-life crisis cars and then all we can do is laugh, because lets face it-we’ve aged-it’s like we are mid-life lol! Not to mention the bags under the eyes and new found wrinkles! Oh the vanity…. 😉
At the same time, we are in constant wonder of the soul fact that we are here…that Poppy is with us….that she has a new heart and is on the floor…AND doing wonderfully…Praise Jesus!! That in itself is overwhelming!! Wow…that because of God’s constant provision, we are able to be here doing this as a family…that we have been so greatly blessed with the gift of our darling babies. Thank you Jesus!!! That we are so prayerfully loved and supported is such a blessing to us. God has all of this and is always faithful to us.
Though we find ourselves overwhelmed with what the future holds when we finally do get to take our girl home, we know He never leaves us nor forsakes us. He has orchestrated everything according to His perfect will. We have been called to be Crosby and Poppy’s parents, loving and respectful spouses to each other, and to do everything we do for the glory of God. Lord help us to be who you’ve called us to be, always seeking You, because it’s all impossible without You, Lord.
Therefore we do not lose heart, though outwardly we are wasting away, inwardly we are truly being renewed day by day by our Lord and Savior Jesus! (2 Corinthians 4:16)