Discharged 

 

Praise God!! Poppy is finally feeling better enough to be discharged!! Her labs came back looking hugely improved from when we arrived!! Thank you Jesus!! 

When we left, we knew we were dealing with the nasty adnovirus, but her high fevers, energy level, labs and a chest X-ray left much in question. It was such a great relief to see her labs so greatly improved, and to have rejection, shunt infection, and EBV ruled out!! After speaking with the docs and respiratory therapists at SCH, it sounds like it’s been a rough season for viruses, and apparently adnovirus has the potential to be pretty bad. We are beyond grateful for the Lord’s hand in orchestrating Poppy being right where she needed to be at the right time.

She seems to be regaining energy daily, and starting to get back to her spunky playful self!! Hallelujah!! She is still requiring oxygen while she sleeps, so she has been sent home on oxygen. It seems as though she’s is possibly having some obstruction when she sleeps, as her oxygen saturations while she sleeping have been dipping as low as the 40s and bouncing right back up to at least 95% (Most people’s oxygen saturations are 90-100%) Hence Poppy’s need for oxygen. She will also have a sleep study once she is well to better figure out what exactly is going on. Her tonsils are ‘massive’ as the ear, nose and throat doc put it. Since she was admitted, the floor docs were able to have ENT swing by and do a quick evaluation, instead of waiting until May. He is interested in seeing her well, and repeating her hearing test, as well has seeing what the sleep study shows before we plan anything.

This isn’t our first rodeo with oxygen…she was sent home on it last spring after spending a week in the hospital with RSV. Thankfully this time she is only requiring it for sleep. I have the utmost respect for those on oxygen constantly…it’s so cumbersome.

The pathology report from the biopsies taken at her endoscopy and colonoscopy also came back. So far, things are pointing to gastritis as well as some indicators of a possible drug allergy or infection. Dr. Geifer (GI doc) spoke with Dr. Hong (transplant doc) about the possible med allergy as well as having Infectious Disease weigh in and test for possible infections that could be wreaking havoc on her poor tummy. If it is in fact a drug allergy, Dr. Hong says it would be the MMF (Cellcept). It is one of the anti rejection meds that she’s on and it’s a nasty one. She is on the MMF and cyclosporine twice a day for antirejection, and by the grace of God, has had no rejection on this combination! If the team must switch her off of the MMF to help her tummy heal, they will, but first want to rule out other possible infections, as this kind of med switch is a big deal. There are other antirejection meds out there, all of which have the potential to have nasty side effects, and all work slightly differently. 

While we were there, infectious disease came by and determined what tests to run. We should hear the results in the next weeks. It has been such a blessing to finally find possible reasons as to why her gut is so sick. Now just praying for a treatable answer. 

Dr. Hong recommended Poppy to take it easy for the next week in order to continue to recover. Her annual cardiac cath/biopsy to check for rejection and MRI have once again been rescheduled for June, in hopes Poppy will be well enough to go under anesthesia by then. The girl has a busy summer of hopefully getting things figured out!! Praying she continues to feel better ❤️ 

Thank you all who continue to pray for us. It is such a roller coaster ride at times…it is such a comfort to know so many are praying for us. We can definitely feel the Lord’s hand in it, every step of the way…though we are weary and anxious, He is faithful to see us through. Though we were there because of Poppy’s illness, it was apparent we also were there for reasons beyond our understanding and comprehension….Thank you Lord for Your divine orchestration.❤️

   

                             

       

 

Turning a Corner 

Thank you so much for your prayers!! The power of prayer is undeniable, and the love outstretched to our family is beyond humbling. God is all over this in so many ways ❤️ Divine orchestration far too complicated and overwhelming to even express. Hallelujah! 

At this point, after too many pokes to count and thoroughly exploring bacterial infection possibilities, it’s looking like Poppy is fighting a very nasty virus. There are still some labs pending that may reveal other things, but we should hear in the next day or two. We are still waiting on her biopsy results from her endoscopy/colonoscopy as well as her EBV labs. EBV (Epstein-Barr virus/mono) http://www.cdc.gov/epstein-barr/about-mono.html is something they check for regularly for transplant patients. It has the potential to cause big problems for those on immune suppression, so they keep a close eye on it. We should hopefully hear back soon! Anxiously awaiting…

Other than that, I am delighted to report that Poppy has been off of the IV antibiotic for nearly 24hrs and has had no fever!! Her severe lethargy is letting up some as well!! Thank you Lord!! She had a few good periods of playful interaction, complete with smiles and all!! Hallelujah!! Our girl is coming back!! Thank you Jesus!! 

She is still on 2L of oxygen, lots of thick goopy snot, irritable at times, and super tired, but overall, it really seems like she may be turning the corner!! Praise God! 

She will get a surveillance echo at some point to just take a peak at her heart. If she has a good night, there is small talk of leaving the CICU and moving to the recovery floor tomorrow (just don’t tell Poppy that 😉)!! The girl is a wild card!! Everyone has said these viruses can be really nasty and can take a long time to clear, so I really don’t know a ‘plan.’ We are here until we don’t need to be anymore. 

Being in the CICU brings back a lot of memories…just being the the CICU with a baby who can cry (not intubated) and well enough to be held (heart rate doesn’t sky rocket to a dangerously high rate or require extra sedation on board to even attempt holding) is a blessing and a privilege. I remember wanting so badly just to hold my baby, even just be able to hear her cry….ugh it’s such a milestone that I never even thought twice about before we had Poppy. Of course you can hold your baby right? And of course they cry!!? Actually, not always..it’s real and humbling and I pray I never take it for granted. 

I see ‘us’ all around…to be kind of on the other side of things is really mind blowing. I look around, and as much as I know how that was once us, a part of me can’t even believe that was us. How did we even do that? And all I can even grab hold of to explain is that it was God’s grace. It’s all very hard for many reasons…but looking back..being back here now in this place…seeing ‘us’ all around…God’s grace. God’s grace IS sufficient, always, if we ask for it. It truly takes my breath away..it’s been emotional for us and I think it always will be..I hope it always will be- it’s a special place with very special people where the Lord and His abundance of grace abounds.

Thank you again for all your prayers ❤️ They truly mean so much to us. To be so prayerfully encouraged through this roller coaster ride is such a tremendous blessing. God is here, in ways that I can’t even fully explain…

   

                           

Admitted

So…some wonderful news! Poppy was well enough on Monday to have her endoscopy and colonoscopy! Hallelujah!! This is what we’ve been anxiously waiting for!! Dr. Geifer found some mild abnormalalitites, but no ulcers and no visible cause for deep concern. He biopsied many areas along her GI  tract in hopes of finding something treatable of which to attribute Poppy’s tummy troubles. We are still anxiously awaiting those results.

And then the not so great news…just as we were heading home, Poppy awoke with a 102 temp, and proceeded to fever for the next 2 days. She still has ger nasty upper respiratory gunk that she’s had, but a temp that high for a kid on immunosuppression is concerning. All the while, Poppy kept her same playful smiley attitude with a little more fatigue than usual. The girl’s a trooper, so we were encouraged to head home, given how she looked. Even when she’s sick, she’s pretty playful and happy! We came home to see Dr. Idzerda. Dr. Idzerda ordered tests to try to pin point the cause of the fevers. After 3 days of Poppy continuing to deteriorate, despite testing and antibiotic efforts, Dr. Idzerda and Dr. Albers (transplant) made the call to life flight her out to Seattle, where further testing and support is readily available.

Poppy is droopy and lethargic, pale and needing a little oxygen via nasal cannula. She has mouth breathing with lots of gunk in her poor nose. Her eyes and demeanor just look sick 😞

Her chest X-Rays have shown a rapid change, however still looking ‘virally.’ She did not tolerate feeds well yesterday and was clearly not feeling well, and her oxygen saturations while sleeping were in the mid 80s. Hers are usually 90s even while sick. In the past, when she had RSV last year, I remember satting in the 80s was enough to be admitted. I just sat down on he floor in her room and stared. Her resting heart rate, usually 100-115 was 155. She was satting 83-87% 😞 Even the night before her sats were beautiful….I just sat there and sat there…silencing the obnoxiously loud alarm the pulse ox sounds when something is out of range, trying not to break down. Why? Please Lord, why?

I had just hung up the phone an hour ago with Dr. Idzerda. Informing her that Poppy had spiked another 102 and thrown up again…and now this…I had to call her back, knowing admission was indeed happening….this is the life we lead…The Lord is teaching me great patience and perseverance…I am such a planner by nature and unreliability kills me. I used to not understand people who were unreliable…just be reliable…just do what you say you’re going to do, show up when you say you’re going to show up, let’s make a plan and all follow through….well, I am now tremendously humbled…my life is unreliable…I have become unreliable. It’s all out of my control. Thankfully God is in control and His hands are the best hands to be in. He is sovereign and things can change in an instant..they really can. He is always here, always faithful. Get over yourself, and give it to God! Easier said than done, but always so freeing. Please Lord, help me give it over to You.

Thankfully, my bag was already packed. It’s not like you want the worst to happen by any means, but you start to plan for it, and pack bags when things seem off, just in case. And once admitted, you really don’t know when you’ll be back. It probably sounds crazy but it’s the life we lead, like so many others here. It’s the unspoken reality of health and morbidity…Lord it’s in your hands!

So as her lethargy and sickness became more apparent. Some labs came back out of range, so the best thing was to get her to Seattle where she could be supported best should she need more support than MT can offer. I cannot say enough amazing things about Dr. Idzerda and the whole crew at Acorn Pediatrics. Their commitment to superb patient care is phenomenal. What a tremendous blessing to have such incredible care in MT!!

She and I arrived around 6:00 this morning. Poppy has been lethargic and has completely slept the day away. It could just be that she has a nasty virus and just needs supported through it. It could also be that a secondary bacterial infection is brewing, so more labs and antibiotics for today. Hoping to hear something soon. Even nurses who know her well are convinced something is not quite right. 😞

Also hoping to hear back about her endoscopy/colonoscopy biopsy results…I’m also curious if her sick gut has anything to do with the sudden down turn. Praying praying something will become clear to the team.

We are here, in our home away from home. Brad and Crosby are on their way. The ‘floor’ is full, so Poppy is in the CICU.  As much as you don’t really want what being in the CICU means, they are like family. God has surrounded us with amazing people to pray, care, and support us along the way and it’s overhelmingly humbling. It’s inexplainable and yet so divine and obvious the Lord’s divine orchestration…We are praying for answers. Lord hear our prayers ❤️

 

                

 

Easter 2015

Easter 2013

  

Easter 2014

   

   

Photos taken by Loni Judisch Fine Art

Easter 2015

   

  

           

 

Photos taken by: Carlie Breen Photography

 What a difference a couple of years makes…! This time of year is super emotional for us for many reasons..it’s like our bodies ‘know’ or ‘remember’ what life was like 2 years ago when Poppy was critical in the CICU, and even last year when was admitted over Easter for RSV. It’s like our ‘fight or flight’ automatically turns on…our nerves are shot…feeling like we’re operating on 1/4 brain power (and we are…just ask anyone around us…we are complete zombies), teary eyed, sentimental, emotional, overhelmed by all that’s happened…overhelmed by God’s grace, peace, and provision..the people and prayers He continues to surround us with..the gracious servant hearted people who just love on us.. It’s absolutely humbling. We look at our family and just feel God’s sovereignty and faithful goodness.

This Easter, we are in Seattle. Poppy had appointments Thursday, Friday, and Monday. 

She saw audiology on Thursday. She is followed by audiology as part of ECMO protocol. Any kid who has been on ECMO is at risk for hearing loss, so it’s part of protocol that audiology follow them for a couple years.  She’s been fighting an upper respiratory virus for a month or so and just finished up a round of antibiotics for a double ear infection. The audiologist wasn’t overly impressed by Poppy’s hearing test. Her left ear was normal but right ear really struggled. She said it’s very likely due to the fact that she’s been fighting a cold and just getting over an ear infection, but because of her history and mouth breathing etc, she referred Poppy to see ‘oto’/ ear, nose, and throat doctor for further investigation. 

Friday, Poppy had her annual cardiac cath with biopsy scheduled to check for rejection and while she was still under anesthesia, she would have an MRI done of her head to better understand her brain injury and seizure origination in hopes to effectively treat her seizures. But, Poppy woke up with a 100.5 temp and the cardiac anesthesiologist, who knows her well, heard junk in her lungs and did not feel it was in Poppy’s best interest to be put under in her current state. Soo bummed but ultimately know it’s what is best and safest. And honestly, Poppy doesn’t have the reputation for ‘most common, best, most predicable outcome’ kid, and they all know it, and I don’t blame them a bit! I don’t trust her either. So while I’m bummed at the inconvenience of having to reschedule for another time, I have a peace about it and am honestly thankful she/we have such an amazing team that truly does what is best for her. He made it sound like if she improves over the weekend, no fever and clear lungs, that she’d be ready for her procedure on Monday. 

Monday, Poppy is hopefully going in for an endoscopy/colonoscopy. Poppy has been seeing a new pediatric GI doc in Billings, Dr. Flass, and he has been such a blessing. He is the first doctor to actually order stool samples and a gastric emptying study in hopes of trying to figure out what is up with her gut?! She has been on a better probiotic, VSL #3 for the last 2 months, as well as a super high dose of prevacid and that’s helped but not enough. One of the stool samples he ran was her calprotectin, which is an inflammatory marker within the GI tract. A high number for a kid her age is 100, hers came back at 600. He decided she needed to be scoped, but just to be sure of the result, he repeated it. Her second result came back at 500. The need for a scope was confirmed!! The poor girls tummy is so sick 😞 Praying praying she is well enough to get scoped… So ready for some answers!! This feeding intolerance and diahrea issues are wearing on all of us…We are just so thankful to have a doc onboard who is as anxious as we are to find some relief for our girl. 

Poppy also saw her neurologist, Dr. Kollros last week when he was in Missoula from Seattle Children’s. Poppy has had a few more seizure like episodes since her big one in January, and as a result, her antiseizure med, Keppra, has been increased to a high dose. So far it seems to be working. He explained that the MRI will provide valuable information when discerning what type and where the seizures are coming from and that will be helpful when trying to treat with the most effective antiseizure medication. Her cath/biopsy and MRI are rescheduled for May. 

Despite the increase in seizure activity, Poppy is making some really nice improvements in her therapies!! She is now all about peek a boo and is waving again!! She is realizing cause and effect with her toys that do things if she presses the right button!! It’s pretty amazing!! She also just got her first set of braces that help support her ankles! She is really working hard on getting strong through her trunk and core. She is trying so hard to crawl by pretty much doing the crawl stroke- it is so cool!! She is even taking steps with support!! Soo exciting!! 😊 Hallelujah!! 

   

               

We would love your prayer for healing…that she would be well enough to go under on Monday…or even better, that her gut would be healed and that she would eat and drink by mouth!! God can do anything!! 

Happy Easter!! May we daily remember the joy of our salvation through Christ and what He has done on the cross for us all ❤️