Probable Explanation

After receiving the full work up to check her heart- her heart looks great! The event likely caused her BNP to spike initially, but is back within normal limits!! Hallelujah!! Her echo was stable from when we were here 10 days ago and still looks beautiful!! No rejection detected either!!! Thank you Jesus for protecting her precious heart!! ❤️ This news is such an incredible relief- like we can breathe again. Whew!

After visiting at length with Neurology, which by the way, God blessed us greatly with who he sent. The doctor he sent actually knew Poppy from when she was so sick on ECMO, and remembers when her brain injury occurred and her seizures first started. He was also very thorough and detailed!!! I mean, direct answer to prayers!! God you are soo good!!

He was able to explain what likely happened and also visited about what we should do if it ever happens again.

Most likely, Poppy seized while laying in her bed, unbeknownst to us. When I found her, she was in a ‘postictal phase.’ A phase after the seizure where the brain is recovering from the seizure. The longer this phase, the more severe the seizure likely was. Her 45+minutes when she was lifeless, barely able to breathe, unresponsive…this was when her brain was recovering from the seizure she had. Followed by vomiting, being super lethargic and sleeping the rest of the day away, all points to seizure.

He explained how Poppy is already at risk for seizures because she’s had them in the past, her EEG shows abnormal activity (due to brain injury) that also puts her at risk for seizure, and also her age. Apparently kids ages 1-3 are at slightly greater risk than other ages to seize. Often the triggers can be: fever, gastroenteritis, flu, cold, and changes in or lack of sleep. So, because Poppy is recovering from gastroenteritis (tummy troubles), had a cold, and really doesn’t sleep well, he believes her seizure was likely ‘provoked’ and doesn’t feel seizures will become an issue. But when she’s sick or not sleeping well or vomiting, we are to watch her very closely, as it could really send her into seizure.

He is increasing her Keppra (anti-seizure med) dose again, which was last done in November, and since we are so rural, he is sending us home with a rescue dose to be delivered after calling 911, should it ever happen again. The rescue dose can usually stop a seizure pretty quickly by slowing down the brain, however with that also comes slowing of breathing, so it’s important we have trained paramedics on their way with breathing support just in case upon administration.

This stuff is so unnerving, because the ‘triggers’ are common things for Poppy. He even said the scary part is that we don’t know if this has happened before, or when it will happen again, but the reassuring thing is that she was able to break through on her own, though her breathing was rapid and shallow, she never stopped breathing and turned blue, which can happen. She didn’t end up aspirating to the point of pneumonia or drowning… Very true…I’ve heard horror stories about what kinds of things can happen during seizure and what can be permanent damage as a result. The Lord protected her greatly from what could have been. I don’t even have words, grateful just doesn’t even begin to cover it.

Besides being tired, Poppy is appropriate!!! Thank you Lord!!! Her reflexes and motor movements seem to be unchanged!! She really looks pretty good! Thank you all so much for praying ❤️ Neurology would like to get a thorough MRI the next time she is under anesthesia, so that will likely be in April before her heart cath/biopsy. It should help them better determine where her seizures would likely start and where they may spread in the brain, perhaps helping us to understand what her seizures would look like.

Oh this has been such a roller coaster ride, but we are so thankful for an explanation and a plan. Thank you for all your love and prayers. Your kind words and just knowing you are praying helps us tremendously. To all who reached out to help and offer of yourselves, we are so incredibly humbled. This life is not what we planned, but God is faithful, never leaving us on our own, but always walking alongside us every step of the way, through the trials and joys. Thank you Lord loving us so fully…so perfectly. ❤️

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Seattle

Yesterday, after Poppy’s quiet night in the ICU the EEG preliminary results told us that there were no active seizures occurring during the EEG. She was really starting to perk up, and I was really thinking they would send us home, as they had exhausted every test that could be done in MT and she looked so good.

However, I should know better, I should know Poppy better than to ‘plan’ on going home. It turned out that one of her lab results became concerning enough for her pediatrician to feel it was in her best interest to be transported to Seattle Children’s.

This lab test is a test that the Transplant team monitors every month, as it can be a decent indicator for heart failure. It’s called a BNP. There are two different ways to run this lab. There is an ‘actual’ BNP (which is how Seattle Children’s runs it), or a proBNP (which is how MT runs it). When we are in Seattle for labs, her ‘actual’ BNP is always phenomenal, ranging from 50-80-really good for someone with a heart transplant. When we do labs in Bozeman, her proBNP is usually in the 300s. Still good, but the problem is, you can’t compare an actual BNP to a proBNP, as they are run differently. You can obviously compare an actual to actual and pro to pro.

So…all that being said. Poppy’s typical proBNP in Bozeman on a monthly basis is in the 300s and that is acceptable. The other morning in the ER in Bozeman, it was 900. Yesterday morning in the ICU in Bozeman it was 2064!! This was alarming to everyone. Dr. Daniels decided it was best for her to be transported to Seattle to be throughly checked out by the specialty teams who know her best.

As shocked as I was to hear about this lab result, they had prepared us for this possibility of being shipped out the day we took her to the ER. Poppy has never had a life flight before. Before she was even born, all the doctors told us to just accept that it would happen at some point, it’s just the way of how things go when you’ve got a complex medical history and you live in a state with no children’s hospital. We’ve been incredibly blessed and fortunate to have avoided one this far. And the fact that she is stable made it a whole lot less stressful than it could have been.

We arrived Seattle around 7:00pm Seattle time. The life flight guys were great. What a blessing they are. Poppy then proceeded to get poked and prodded again. Sooo hard to watch 😞 after such a long day, but I mean, that’s why we are here, right? – to figure out what happened the other morning and be sure it isn’t heart related somehow.

She got fresh labs, nasal swab (she’s got a cold), and EKG. She will get an echo today to look at her heart. We just have to be patient and see what they say at rounds.

Can I just say my sweet girl is such a trooper. I mean, she is so brave and so strong. She obviously gets upset when she has to get poked, but she’s smiling 5 minutes later. She is totally covered in grace and it’s obvious. Life is not easy for her. There are so many times I find myself pleading…please Lord, can she just have one thing that comes easy to her? Please? Just one thing? 😩 It’s so easy for me to watch how she struggles and just hurt for her. But when I take a step back and look at what does come easy to her, she smiles. There was a long time when she was very sick with shunt revision after shunt revision where she had no expression. But now her smile comes so easy and so often for her. It is truly a gift- the thing that comes easy to her, is something we take for granted and definitely don’t do enough of in our world. Her smile is pure joy, in the midst of the challenges in her life, she has pure honest joy. She works so hard to do everything and she’s joyous. God’s grace overwhelms her. How convicting…how inspiring to be her momma. Humbling.

And Crosby…he is amazing. He is such a sweet servant hearted boy. He is such a sweetheart and a giver. He is exceptional when it comes to constantly having his routine shift when these things happen. But he’s social and happy to be a helper, he is such a blessing. God continues to teach me so much through my kids. It’s so cool ❤️ It’s truly an honor to be their momma.

Brad and Crosby are on their way out today, and we can’t wait to see them!! When you’ve had the luxury of not being admitted for a long stretch, it really hits hard when stuff like this happens. We miss our boys 😞 Praying for safe travels. Praying for answers and explanations. Thank you all so much for keeping us in your prayers ❤️ The outpouring of love and prayers truly means so much to us. ❤️

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A Day We Will Never Forget

So our day today was really not something we saw coming. Poppy was up for parts of last night vomiting. She’d had about 10 days of not vomiting at night, so this kind of caught us off guard, but was not alarming. But it was different…usually when she vomits, she coughs and that cough usually gives us time to jump out of bed, run into her room, sit her up and catch her vomit. Last night, we heard a cry and found her face covered in vomit. We did a midnight bath and didn’t think too much of it, because she’s done it before, even though it was weird she didn’t warn us. She proceeded to heave and retch in her sleep throughout the night. At 3:30 she had finally had enough volume for me to feel ok about turning her feeds off, hoping we could all get some rest before getting up again at 5:30 to give her meds.

At 5:30 I show up to give her meds. I just knew…something was wrong. She’s laying there, eyes wide open, breathing super shallow and fast….she’s unresponsive…a rag doll. I call Brad in to see what he thinks. In the meantime I take her vitals and check her O2. O2 90% heart rate was elevated around 145- I immediately started thinking…’oh no, I wonder if she aspirated earlier in the night, and now she’s drowning on us.’ I remember reading those tragic articles of the kids who take on too much water at swimming lessons, are fine when they go to bed, and end up drowning in their sleep. I immediately called her peds office and we prepared to race to Bozeman ER. I checked her head circumference trying to see if it was growing ( shunt failure?), her pupils were reactive but we could not get her to track or hold her head up. I don’t think we’ve ever been so scared of losing her….right before our eyes, on our watch….of all the things she’s been through, to lose her to something so mysterious and out of the blue…it was awful…we were hysterical. I cry my fair share, but since she was born, through all of it, I can count on one hand the number of times I couldn’t hold my tears back in front of people…today was one of them. We seriously thought she was going to die on us.

Just as we got into Bozeman, at about 6:15, she started breaking through and moving her limbs a little and finally crying. It was like she had been stuck 😞 She was finally able to break through… oh it’s so hard to watch 😞 we’ve never felt so helpless… Praise God she broke through!!

Her teams in Seattle were notified and consulted. She got a slew of tests: blood work, head CT, chest and shunt series x-Ray, and finally an EEG. We were sure it was a shunt failure, the way she’d been retching and vomiting in her sleep, the way her eyes got stuck, just everything, but neurosurgery met and really liked how her head CT looked. Blessed news. Thank you Jesus!! Amazing news, on many fronts. But then what happened?

Poppy’s neurologist was consulted, and so far the consensus is that she had a seizure. At least a 45 minute long one at that. They got the EEG and so far, at least at the time of the EEG, she was having no active seizures. Again, amazing news….but then what happened? What do we do now? I have many questions for him. He’s out at Seattle Children’s, but I’m hoping once he is able to read the EEG himself, we can talk and get some answers. We would love prayer for that. At times it can be challenging to talk to neurologists. You really have to ask the exact right question to get any kind of detailed answer. It’s no ones fault, it just seems to be a neurologist thing. If you could describe in one word. Vague. Pray that I ask my questions in a way that yields good answers. Thank you. We so appreciate your prayers and concern.

So here is the current: It still could have likely been a seizure, and that’s what we’re going with until something else tells us otherwise. For now, we are spending the night in the ICU for monitoring. She’s also requiring a small amount of oxygen. She is on full cardiac monitors, which is always a comfort to me. Can’t help it. Now just pray I don’t stay up all night watching the monitors lol. She does seem better. Besides sleeping the day away (which I hear is very common after a huge seizure), we actually got some smiles this evening. Sooo encouraging!!! Thank you Lord, we sure needed that.

Praying that tomorrow brings some kind of explanation and game plan, should this ever happen again. Lord you have this. Lord I pray for peace. Lord I pray for my babies 😞 May they know and feel how much they are loved, especially on hard days such as these. ❤️

‘Be joyful in hope, patient in affliction, faithful in prayer.’ Romans 12:12

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Hallelujah!!!

It was a long week, but it honestly couldn’t have gone better 😊 The Lord provided abundantly in every way imaginable!! Not only were gas prices in our favor, we had clear roads each way, and Poppy’s appointments went incredibly well!! Hallelujah!!

Her upper GI study was normal! As good of news as this is, initially I found myself slightly disappointed, only because at that point, there was no explanation for her feeding intolerance. This normal study really is a blessing, because as the doctor explained, an abnormal study could have meant more surgery or a more serious issue to work through. Definitely feeling blessed that this wasn’t the case.

I’ll be honest, I was nervous with anticipation. Would they take the time to read her history? Would they actually have a decent explanation for what is going on? Would they share our concern? Our past interactions with GI have been really challenging, and stressful. However, the Lord put in our path an amazing GI doc. It was clear he had done his homework on her case and was very easy to communicate with!! He shared our concern!! Thank you Jesus!! After reviewing her history and the last months, he is very confident that her issues go back to October, when she struggled with a terrible GI bug that was aggravated by antibiotics to treat an ear infection. She had lost 2 lbs and could not keep her bed, herself, her clothes dry for really any length of time. I was literally doing 5 loads of sheets/day plus clothes- her tummy was an absolute mess. During this time, we had even doubled up on her probiotic, which at the time, didn’t seem to even phase her. He believes that her gut is still healing from that. He says some people do ok and heal more quickly, but others, especially those with slow guts to begin with, that when the tummy is stripped of everything good, that even the nerves are affected, slowing things down, relating to digestion, stomach emptying etc. He believes that once her gut is healed, that she will bolus feed again!! We were delighted to hear that he believes she will bolus feed again!! I mean this is huge!! We are praying his explanation is the case, and that with a little more time, we will see her feeling better!! He doubled her probiotic, Culturelle as well as her Prevacid and took her off Zantac. Since she’s been on Zantac since the day she was born, he feels she’s built up such a tolerance that even a dose increase may not even help. We will keep her on continuous feeds for another month or two and then try bolusing again. For now she is tolerating 20cal EleCare Jr., even at night!! In fact, during our whole trip, she only threw up once!! We are hopeful! Thank you Jesus for placing this doctor in our lives!! We will stay the course and see what the next few months hold. We will still be looking into a blenderized diet- it just seems like it would be the best for her, so when she’s ready, we will try! He believes she will likely be ready for the Intensive Feeding Program that she is signed up for in July!! Praying that’s the case!!

As far as her heart goes, she’s looking amazing!! Her labs, echo, and EKG all looked great! Thank you Lord!! That kind of news never gets old 😊 Her next follow-up will be for her annual cath with biopsy in April!! It’s so hard to believe she has nearly 2 years old (March 8) and 2 years post transplant (May)!! How did that happen?! She is getting so big and such a sweet little girl with a definite personality 😊

Her eyes were great! She won’t be checked again until July when they’ll do a dilated exam! They monitor her eyes closely because of the 2 shunts in her head. Sometimes pressure can build on the optic nerve and that has the potential to impair vision if not caught in time. She’s still sporting the same glasses!!

The most exciting news of all came on the last day of appointments. Neurodevelopmental. We went in to this appointment a little nervous. At our last Neurodevelopmental appointment, things like Poppy’s talking and walking and cerebral palsy were discussed. At the last appointment we were told, judging by the severity of her brain injury, that it could be quite likely that Poppy may not talk and/or may not walk, and that Cerebral Palsy could become a diagnosis for her in the near future. In no way was it meant to put her or our amazing God in a box, it was really just to prepare us for the possibility of severe disability and to be sure we are doing all we can for her.

As I shared, we were excited to show off her new skills, but still somewhat anxious as to what would come…. SOoo Dr. Myers was impressed!! She was happy to see that while Poppy’s development is slow, it is in the order of typical kids, not asymmetrical. Thankfully Poppy had napped really well before and was super happy and interactive!! She was outstanding!! The way she babbled and moved her body was very encouraging to Dr. Myers. She said that from what she sees Poppy doing now, and the progress that she’s made, that she would expect her to someday talk and walk!!!! Woohoo!!! Hallelujah!! No Cerebral Palsy at this time!! She said the ‘sky is the limit!!’ Thank you Lord!!!!! Tears of joy and thanksgiving!! Just Soo amazing and humbling, and joyous beyond words!!

Thank you all SOoo much for holding our family closely in your prayers. It truly means so much to us. We can definitely feel it 😊 God just continues to carry us through this incredible journey we never dreamed we would be on. He just continues to reveal his love and faithfulness through the work He is doing through Poppy and in our lives. We definitely have our challenges…the day to day stressors are ever present. But the days we surrender it all to God are the most peaceful days- it is by His grace alone we are even functioning. He does not forsake us. He loves us, guides and protects us. Thank you Jesus for your Sovereign will. Hallelujah!!

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Praying for Answers

We are currently en-route to Seattle for Poppy’s follow-up appointments. Most of them are routine, with the exception of her GI appointments. Today, she will have an Upper GI study done in hopes of helping to answer the reason for her constant vomiting pretty much since her g-tube procedure. She will also see a GI doctor and we are all wearily praying he/she can shed some light on all of this. In the past couple weeks, Poppy has had bouts of retching and vomiting old blood and yesterday, it actually had a pink tinge. Her diapers have also recently shown traces of old blood. Some of this old blood coming up can happen and be normal for any kid with a feeding tube, however the increase and the change to more of a pink tinged color is concerning to me. I’ve seen this girl vomit thousands of times (literally) and plenty of times old blood, but pink blood is unnerving because it means it’s a little more fresh/active. We are fervently praying for answers. Please Lord, let there be a reason and please Lord, let there be a safe solution!!!

It has been so hard to watch her struggle with her tummy. We have tried some purée through her gtube and she seems to tolerate it a little better, so we are hoping to team up with a GI doc who will help us advocate for a blenderized diet. A blenderized diet is basically as it sounds. Real food is blended to a consistency that will move through her gtube. The hardest most tedious part of this is counting calories and volume. Ensuring she gets her hydration as well as caloric and nutritional needs met is the challenge. I am a fan of this on every front, but realize the time commitment on my end and pray for the wherewithal and endurance to take this on, should this be the route best suited for Poppy.

Her interest in oral feeding has really been affected, and I can’t say as I blame her. The last thing I would want to do if I was throwing up all the time would be to put food in my mouth. And we try and we try and we try and try and some days are better than others, but please, for me, please never take a kid who eats and eats well for granted- oh it’s a gift. Crosby is that kid, always has been, and boy did we take it for granted at the time!! You just don’t know or realize until your eyes are opened to the world of sick kids who don’t eat. She does her very best with a smile on her face and that is a gift in itself. Pure joy absolutely radiates from her 99% of the time. Hallelujah!! That is God’s grace- that is the Holy Spirit alive in her. It’s humbling and a delight to watch her as God is constantly working on my own patience and endurance through her and her attitude. Ultimately, He has this all under control, I just need to constantly hand it over to Him.

In addition to her GI visits, she will also see Transplant Cardiology, Opthalmology, and Neurodevelopmental.

We are excited to report progress to her Neurodevelopmental doc!! She is doing more babbling, pushing her arms through her shirt sleeves, clapping on que, dancing to music, showing preference to certain toys, and really gaining some nice strength in her trunk, arms and legs!! She is actually liking to bear weight on her legs!!! She continues to roll around, sit and play, reach far and wide for toys, and work very hard in physical therapy, spending time in side sitting, up on all 4s, and supported standing. Her progress is slow but it is there!! She is doing amazing!! It has been so fun to watch her blossom. ❤️

I am so thankful to have our family together for this trip. Thank you Lord for providing time off for Brad, clear roads, and amazing gas prices!! What a tremendous blessing. You can keep us in your prayers though, last weekend Brad came down with Influenza B and we were all put on Tamiflu. Please pray that the rest of us are spared from this nasty crud. Thankfully, Brad seems to be on the mend, not having a fever for a couple days now, and Crosby and I seem fine. Poppy is fighting something, I’m fairly confident it’s not the flu judging by her symptoms, but praying she can feel better soon. The illness this season has really left our family missing our dear family and friends!! Praying we are DONE with this constant battle of communicable illness!!!

We would love your prayers over this time. We are really kind of a mess lol 😉 A nice reminder of our constant need for Jesus 😊 It’s obvious God’s hand is all over this trip as He always is. He is so good to us!! ❤️ May we glorify Him!!

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