Poppy had a fabulous visit with Neurosurgery on Monday, so we were on our way immediately after her appointment! The Neurosurgery NP Mandy, said that this fine tuning of the shunt settings is really very common and can be just part of having shunts for a lot of little ones. She was quick to reflect back on just how far she’s come since that trip to the ER back in July, that landed her emergently into the OR that same day. Perspective!! Yes!! Love it!! Her head images are closer to normal than we’ve ever seen!! Hallelujah!! The roads were not ideal, but we made it back safely Tuesday late afternoon. Thank you for all your prayers!! 😊
She has shown us in so many ways that she is indeed feeling better!! Thank you Jesus!! She is now tolerating the feed rate she’s been on for months!! She was able to work herself up fast!! I have to say, I was nervous and disappointed about her sudden regression, because we’ve been working so hard. Praising God for His goodness and mercy for this tremendous blessing!!
We’ve also seen her really improve in her physical abilities. She is actually able to spend more time on her tummy and will reach for toys in front of her and has shown us subtle ‘swimming’ movements!!! I mean, is this a soft sign that crawling is of interest to her?! And sitting…she WANTS to sit up SOoo bad!! Even in her car seat (yes, most of the way home from Seattle), she absolutely insisted on leaning forward to play, instead of lounging back and bringing her toys to her!! She is definitely gaining core strength and it is SOoo exciting!! Obvious improvement- praise God!!
She is also more interactive and smiley!! She IS the sweetest ❤️ We are soo relieved and excited to have her ‘back!’ Thank you Jesus!!
It’s kind of one of those things where, when her regression seems gradual, it’s easy not to see it all at once, especially when you are with her all the time. But when she’s back to herself, the regression becomes so apparent. It’s crazy. Thank you Lord for blessing us with such a fabulous medical team that trusts me and my ‘gut’ feelings, and who have the discernment to know when it’s time to take the trip…
After being checked out by Opthamology, Neurology, and Neurosurgery (yes, they are separate believe it or not) again on Friday. Neurology had no concern of seizure activity and Opthamology said her optic nerve looked beautiful!! Praise God!! Neurosurgery decided that giving Poppy the weekend to settle out would be the best. At this point, she was not tolerating bolus feeds and was still not acting herself. Another haste MRI and check up were scheduled for Monday in order to ensure things look good and that she is feeling better before we head for home. We also visited with Cardiology about her Zantac dose. She’d been on the same dose for as long as I could remember and decided she could definitely tolerate an increase to see if that would help with her vomiting. Worth a try!
Over the weekend, Poppy is improving!! Hallelujah!! Praise The Lord!! She is now tolerating her bolus feeds again!! She’s not quite up to the rate she was at prior but close!! She’s also soo much more happy and interactive!! She’s even trying really hard to sit up and is working on her rolling without prompting!! She is coming back to us!! Thank you Jesus!! And today, she and daddy share a special day- Poppy is celebrating her 9 month birthday and Brad is celebrating his 32nd birthday!! God is so good to us. Humbled by His overwhelming grace and provision. Thank you Jesus for allowing us to celebrate this day together ❤️ Looking forward to hopefully being Montana bound on Monday!! Thank you all for your fervent prayers 😊
Well, Poppy is still absolutely LOVING her new heart!! Hallelujah!! Thank you Jesus!! Her echo and EKG were perfect!! Her lab work, with the exception of her magnesium, were right on as well!! We are thinking the new rhythm that I heard was the low magnesium. It’s not uncommon to hear arrhythmias when electrolytes are even slightly off, so we were happy to hear that was most likely the reason! Possibly her mag was low because of the increased vomiting and diarrhea. She’s also on the cyclosporine that is known to ‘waste’ the body’s magnesium, so a little dose increase of mag and arrhythmia is solved!! Praise The Lord!!
As far as her shunts go…her ventricles are still small. This is good in the way that it means her shunts are still working!! It is ALWAYS a relief to know her shunts are working!! Thank you Jesus!! However, Poppy ended up showing the Neurosurgery NP what she’s been up to as far as acting not herself, which was helpful. The Neurosurgery team decided to adjust the shunt that goes into one of her ventricles to drain a little less, and decided to keep the shunt that is in the cyst at the setting that drains the most, and see how she does over the next few days. She agrees that something is not right, that she is definitely uncomfortable and not acting herself, so she said that they will also be consulting with Neurology just to be thorough. They want to be sure that it’s indeed just a shunt issue and not something developing. It could really be a lot of things…shunt setting, seizure related, her just getting older and starting to have an opinion about things, damage starting to reveal itself, a couple things going on at the same time…etc. So we are here for a few more days and we are ok with that. All we want is for Poppy to feel better and more herself, and to be sure that she is before heading home. Praying fervently that the shunt adjustment is just the thing she needed!!
Since being adjusted late morning yesterday, Poppy has vomited 3 times, and has worked her feed rate down to a continuous rate of 35ml/hr. This means that she is no longer able to tolerate being fed ‘meals,’ but now gets a continuous drip of just over 1oz/hr for 20 hours a day. This is a major regression in the area of feeding…I will be calling and probably taking her back in today… There is usually an settling out period after a shunt adjustment, so praying praying that this is all it is.