A day in the life of our Poppy…I got to thinking this may be interesting to some, probably boring to others, but whatevs…here goes..
The yellow tube you see coming from Poppy’s nose is a feeding tube. Hers is going to her duodenum (small intestine). She receives 24 oz of formula this way every day. She is on ‘continuous’ feeds, meaning she gets about 1 oz every hour. She also receives all of her meds this way. She has this tube because she has spent all of her life in a hospital, very sick and intubated (on a ventilator), and she never had the chance to master a suck and swallow. She had also lost the small amount of suck she did have before she got her vp shunt for hydrocephalus. Praise the Lord, her suck, among other things, came back almost immediately after her shunt was placed!! We are now working on this during our ‘Binky training,’ where we hook up a small syringe full of formula to a passy and she is able to practice her suck and swallow in a controlled way. The concern of just giving her a bottle and hoping for the best, is that she could potentially inhale the excess milk she is unable to swallow, and that could be life threatening. This is why it will be a slow and steady process of working her up to taking more and more volume through her mouth. Obviously the goal is to get to a point where she is able to take enough nutrition by mouth to grow- until then, she will have some kind of feeding tube, whether it be this same set up, or a g-tube that hooks directly into the stomach.
The unique haircut you see is from Poppy’s vp shunt surgery. The little bump and tubing you see beneath her scalp down the side of her neck is her strata vp shunt. Her vp shunt is used to treat acquired hydrocephalus as a result of brain bleeds during her time on bypass and ECMO. Her shunt is reprogrammable from the outside by magnets. Hence, no magnetic toys, iPad cases, old cell phones, or MRIs without it needing to be reprogrammed. This shunt controls the amount of spinal fluid in her brain ventricles, and drains the excess to an area around her stomach. Shunt malfunction can be fairly common with this type of shunt, so we are to watch her neurological state closely. It is amazing what a difference this shunt has made as far as Poppy’s neurological development- thank you Jesus for thorough docs at SCH!!
The black toe you see on her left foot is dead because of a clot she threw during her original Norwood procedure. It is set to come off in September.
The rounded face and luxurious head of hair you see on our girl, that seemingly came on overnight is from the prednisone and cyclosporine she is on for anti rejection. She is weaning the prednisone now, and should be off of it by August. The cyclosporine is forever- so my girl will have great hair…always!! Lol (I’m a hairstylist) 😉
A Day for Poppy:
6am: The mother load for her medications. In her case, her continuous feeds must be turned off a half hour before her 6am, 2pm, and 10pm for proper absorption of her anti rejection meds, and stay off a half hour after meds are given. She receives the most at this time. She gets 3 anti rejection meds (cyclosporine, cellcept/MMF, and prednisone), her sedation we are weaning (dilauded/hydromorphone), blood pressure/heart meds (verapamil and captopril), a diuretic (diuril), anti seizure med (keppra), magnesium, Zantac, probiotic (culturelle), blood thinner (lovenox-it’s a shot AND undoubtedly the worst part of my day), anti-yeast treatment for all the meds she’s on (nystatin) one for mouth the other a diaper ointment, and on M,W,F a med that fights bacterial infections (bactrim).
Get ready for the day
At 10am she receives her sedation (dilauded) and yeast prevention (nystatin).
Somewhere in here we work on binky training and strengthening her arms, legs, and neck.
2pm it’s time for anti rejection meds again (cyclosporine, cellcept/MMF)- this time she takes a viral fighting med (valcyte) instead of prednisone. She also gets her heart meds (verapamil and captopril), her sedation (dilauded), as well as her yeast prevention (nystatin).
Somewhere in here we work on binky training again, do a bath, and play.
At 6pm she gets her shot again :(, her anti seizure med (keppra), her diuretic (diuril), her sedation (dilauded), her magnesium, probiotic (culturelle) and Zantac.
Read books with big brother, Crosby.
10pm rolls around with anti rejection meds again, much like 2pm minus the valcyte.
2am she gets her sedation (dilauded).
And then another day begins….lol
I do want to add that these anti rejection meds are nasty- 3 of them (cyclosporine, cellcept/MMF, and valcyte) are considered ‘hazardous’ and gloves are recommended to be worn when handling. This also means her waste is ‘hazardous’-it’s crazy. The very thing my baby needs to help her body not reject what’s keeping her alive is so hazardous that birth defects can occur if one is pregnant and the hazardous meds are not handled properly-it’s just crazy…these particular meds also HAVE to be ON TIME, EVERY TIME. It’s daunting, but if late more than a few times, it’s possible to see changes in rejection scores- meaning rejection could result- these medications are soo crucial it is insane.
These anti rejection medications work by depressing the immune system to keep the body from fighting this new foreign object (her heart). Because she is being hit so hard with anti rejection meds, we are strongly advised to be selective with visitors, therefore we have limited it to only family- non sick family members at that. It’s just a big deal and after a few months Poppy will be further out from transplant and on fewer meds-then we will be able to be out and about more. Right now we are at home or at clinic or on a walk.
At some point while she is sleeping, I take her vitals using a stethoscope: heart rate, respiratory rate (how many breaths she takes in a minute) and a temperature. We are blessed in that because Poppy is now allowed to have oxygen saturation at 100% (with her old heart the goal was 75-85%), and she has been SATing 100% since her new heart, we were not sent home with an O2 saturation monitor. One less thing to check…I also record when and what her diapers are, and same for any vomiting.
I draw up all of her meds 24 hours ahead of time. Because they CANNOT be late, this helps me to insure they are always ready. If we are at clinic and meds are due, they need to be ready for me to give them. I make her special formula (Elecare) once a day and keep it in the fridge for when her bag is empty, and pack it with ice packs to insure it stays fresh in this hot weather.
Rejection is something for which Poppy will always be watched closely. Many of the signs can be typical things such as ‘flu like symptoms,’ sudden weight gain, a trending temperature of just 1 degree higher than her normal, a heart rate of 10 beats per minute higher or lower than her normal, and the list goes on. These are just the things we as parents are watching for, the doctors are doing specific echocardiograms (ultrasounds of the heart), EKGs, and labs all twice per week right now this fresh out of transplant. They take the results of each and plug it into a formula to produce a rejection score. Many, many factors are considered before they treat for rejection. Treating rejection can entail hospitalization on IV steroids, and /or an increase of anti rejection medications at home. Rejection is typically well treated if caught in time, if not, obviously it can be fatal.
So far, Poppy has shown no signs of rejection-praise The Lord!! However, her heart is thick- it always has been. She is on a couple heart medications to treat this right now, and will likely continue for a good while. Apparently this can be common in transplanted babies due to the time during the transplant when the heart had no profusion. It can cause the heart to become ‘stiff.’ Ideally, her heart would start to loose its thickness as it relaxes into her system. Because her heart has always been this way, they aren’t concerned for rejection. However, had her heart not started out thick and had became thick, they would call it rejection. Please pray that her heart starts to lose its thickness-the docs would expect to see this happen here in the next couple of months. She also has some tricuspid valve regurgitation, which was also an issue with her old heart. Because she has a normal heart now, (a heart with 2 ventricles instead of 1), and a normal tricuspid valve it isn’t as huge of a deal, but please pray it would be reduced to mild from moderate, as this is something they are also watching.
We have been told to expect to stick around the Seattle area for a few more months, until Poppy’s drug levels stabilize and her appointments out here go to once a month. Obviously I will not be able to return to work, due to Poppy’s extra needs. This means I get to be a full time momma and nurse to my babies, wife to my hub, and I am honestly delighted!! I have always wanted to be a stay at home mom- thank you Jesus for a dream come true!!! I know it won’t be easy- in fact, it’ll probably be the hardest thing I ever do, but I feel so blessed to get to do it. 🙂 I pray I never take it for granted- I pray I cherish every moment…
We truly have so much to be thankful for- she is really doing very well, despite the cold she caught somehow? You can also pray for that to be over! 😉 But really, she’s doing great 🙂 Hallelujah!!!
We have a number of friends who are in great need of prayer:
Adrian- HLHS waiting for a heart (SCH)
Michael- HLHS waiting for a heart (SCH)
Elizabeth-HLHS waiting for a heart (SCH)
Joe- HLHS is having a really rough time
recovering from his heart
Wyatt- HLHS is fighting an infection
around his heart after his Glenn
Livia- post op from open heart surgery
Tucker-post op from open heart
Oskar- goes in for mitral valve
replacement and possibly his
Glenn tomorrow (SCH)
Kyle, Victoria (HLHS), and Christian- having a rough interstage (time between first and second surgeries for single ventricle) and need to grow and be healthy for their Glenn (SCH)
*HLHS is the diagnosis Poppy had-there is lots of variance within the diagnosis. The others have unique diagnosis, most of them though, are single ventricles as well.
Thank you all for praying. God is here-your prayers are deeply felt and cherished.