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. ❤️

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

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!!

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!!

Christmas 2014

Before Christmas, the kids were fighting terrible colds, and with a whooping cough outbreak in the school where Brad works, it was a stressful time. Even though we’ve all been vaccinated, in this particular outbreak, a vaccine didn’t seem to matter. And because Poppy is on immunosuppressants, it’s always hard to say if her system mounts the appropriate response to a vaccine, since vaccines are all about building immunity. It was stressful, but we came out negative and feeling much better just before Christmas!! Praise God!!

Poppy’s really been struggling with her g-tube feeding. She had a good week of bolus feeds which are more like meals for you and I, and since she’s really had a set back. Her reflux is in full force, where even an increase of her reflux meds (Prevacid and Zantac) hasn’t touched it. She’s got a dry cough and hiccups all the time and will vomit if it’s bad enough. She’s not able to tolerate her ‘meals’ and since Thanksgiving has been on continuous feeds, which is where she is fed a little bit constantly. At night, I’m having to water down her formula in order for her to keep it down- if I don’t, she’s up coughing and heaving and vomiting the tiny amount that’s in her tummy 😞 She’s even seeming disinterested in oral feeding, as she’s not tolerating much by mouth at all 😞 We’ve talked to Dr. Hardy, general surgery (who placed the gtube), and transplant. We have referrals to GI docs in the works to try to figure out what the deal is. The Nissan procedure/fundal plication has been tossed around and is not a favored route by any team, including Brad and I. We would love specific prayer in this area of feeding. We are just weary and seemingly running out of reasons/answers. Our biggest fear is that she would avert again. Oral aversion is a crazy thing that is very real and can take a looonnnngggg time to overcome, if ever. She’s had it before, and it seemed like she had overcome it, but with the way she’s feeling, I can’t blame her for not wanting to eat much. Thankfully, because she is tolerating the continuous feeds, her weight is solid..hallelujah!! We are praying for a miracle- that she would just wake up one day and eat!! And eat safely with no concern for aspiration!! God can do anything, we’ve seen His hand at work many a time. Please join us in prayer for Poppy’s feeding.

The kids really enjoyed Christmas! It was so fun to share such a special time together and impress upon them the true meaning of Christmas. ❤️ The gift of Jesus, the forgiveness of our sins, and eternal life for those who believe. What a privilege it is to share Jesus with them. Though challenging at times, it is such an amazing gift to be a parent…thank you Lord!!!

Christmas was a special time spent together as a family. Super low key and relaxed…such a sweet blessing to be home together. The ease of seeing family and spending time is in itself a blessing so easily taken for granted. We were in Montana last year for Christmas, and again this year- 2 consecutive Christmases at home in Montana…I know it may seem like a silly thing to point out and be thankful for but when you know plenty of people who are back there, admitted over Christmas, because they are sick once again, you have to cherish these times, because it could easily be your kid next. My heart hurts for those away having to endure precious time away from family and the familiarity of the season at home, while living a constant fight for life with their sick child….I just ache for them and pray the Lord’s perfect peace and comfort to come over them.

We hope you all had a Merry Christmas and wish you a Happy New Year!! May God’s blessings overwhelm you all year!! Thank you all for your continued prayer and concern for Poppy and our family. It’s truly an indescribable feeling.
God Bless!! ❤️

Discharged

Poppy was discharged in the late afternoon yesterday. It felt so good to be able to go to our room at the Ronald McDonald House. It was obvious Poppy felt more comfortable and secure.

Yesterday before being discharged, Poppy had her echo and EKG done. The transplant team figured since she was there, they should do their check on her. The sonographer was amazing. Poppy had just finally drifted off to sleep and she was actually able to complete the echo without waking her up!! I mean, she was so conscientious and quiet, I was impressed and felt very blessed by her and the way she worked. During the echo, it seemed like she kept looking at a certain spot, and being that Poppy was soo still, part of me figured she was just being thorough and taking advantage of the stillness. And the other part of me had a feeling something was up. Needless to say, the results couldn’t come soon enough!!

Dr. Albers called today and said that the echo looked good overall, however her tricuspid valve regurgitation is now moderate. At the last echo it appeared mild, and the echo before that was mild/moderate. Deducing that possibly the echo before this wasn’t a great picture perhaps? Regardless, her TR (tricuspid valve regurgitation/leakyness) is now a solid moderate. Poppy will see Dr. Hardy next month to keep a close eye on it and be sure it does not become worse. Soo thankful this can be monitored at home, but would love your prayers that her TR would improve!!

We have been absolutely blown away, overwhelmed by the people who have made it a point to visit us and bless us with hugs and goodies and just their genuine care and concern. Hospital staff, heart moms, volunteers, and friends have just shown us such love this trip, it means more than words can describe- truly brings me to tears. Thank you all for your fervent prayers and loving support. God is soo good.

Poppy has a routine neurology follow up, complete with a EEG on Monday, as well as G-tube follow up where they will teach me how to use and care for it. We should be on our way home Tuesday morning, courtesy of Angel Flight and one of their generous pilots. Seriously overwhelmed by God’s abundant provision.

Recovery

Poppy had a great night of resting and catching up with old friends in the CICU. Mid-morning, we were transferred to the floor! She is back on feeds through her NG tube, as she is to wait a full week before trying out her new G-tube. With her immune suppression, the healing process can take longer than usual, so that’s the reason for the wait. So far the g-tube site looks really good and Dr. Goldin is happy with it! I will be taught how to use it and care for her skin around it on Monday. If she is able to get back up to full feeds tomorrow, we will be discharged to the Ronald McDonald House!! That’s right!!!! They called this afternoon with a room for us!!! Thank you Jesus!!!

Just before I got the call, I was talking with the resident and I’m pretty sure I scared him..lol 😊 He started talking about possible discharge tomorrow and asked me if I had plans to stay in the area for a few days or if I was going back to Montana for the weekend. Obviously I’m not going back to Montana for the weekend 😉 but I told I’m that Ronald McDonald was full and that I had no plans. He looked worried and ask if I needed any help with making plans. I said I really don’t get to make plans….you can’t really make solid plans when your baby is in patient and your baby is Poppy. I told him not to worry 😊it will all work out the way it is meant to. He left the room slightly unsettled lol. I know I shouldn’t get such a kick out of it, but when you’re sleep deprived and hyped out on coffee??? I mean?!?!!! 😊 but it made me giggle. I’m such a planner by nature that I really do know where he was coming from..but Poppy doesn’t really ‘do’ plans so I’ve had to grow my patience and wait on the Lord and His timing.

Thank you all soo much for your love and concern for our girl. We are so incredibly overwhelmed by your prayers and support..it’s truly Divine.

G-tube Surgery Update

I had hoped to update sooner, but we’ve been …well, busy. He came out and said that the procedure went perfectly!! Hallelujah!! My girl finally has a G-tube!! 😊 Words truly could not express what a divine victory this is for our girl!! Big big day!!! 😊

Dr. Goldin and Dr. Browd decided that instead of moving shunt tubing to make room for the g-tube, that Dr. Goldin would instead, move her stomach. This was music to my ears, as my main concern came with touching the shunt tubing and infection risk with that. They decided that this option was safer over all and they both felt it was the right thing to do! !!! Hallelujah!! Soo so incredibly thrilled!!

Poppy was upset in recovery, so I was allowed to go back and attempt to console her. She was in a lot of pain, and still coming out of anesthesia. After an hour or so, and some morphine and tylenol, she seemed ready to rest, so we began the transfer to the floor. Upon getting there and getting settled, she decided to hold her breath and began to turn blue, only never caught her breath, becoming unresponsive. She had to be bagged. Her oxygen sats dropped to the 40’s (normal is 95-100%) That, in all my days of staying with her in the hospital, she’d NEVER done that. She will old her breath briefly at home when she’s very upset, but immediately catches her breath and it’s over. My girl was blue and because the nurse had to bag her (give her rescue breaths) she called a code blue. Within seconds she had 20 people in her room, many of which are CICU nurses and doctor. After talking it over, they decide she is not ready for the floor and needs to go back to recovery and let the anesthesia wear off a bit more. We went down and I held her the whole time. After 3 hours of groggy sleeping and intermittent crying, with a tiny bit of oxygen help, and no de-satting, we were ready to go back to the floor….or so we all thought.

She had just received more tylenol and all of a sudden she does it AGAIN!! Not responsive, arching her back and turning blue, oxygen sats dipping in the 20’s this time. No patting or sound or anything could make her catch her breath- she looked at me like she was stuck and scared 😞 Bagged again, code blue..again. With that, it was up to the CICU for observation. No doubt the Lord’s hand is all over this. The staff who surrounded us today was indeed Divine. I’m so incredibly overwhelmed by the Lord’s unfailing provision. It’s just so humbling and obvious and unexplainable. This hospital is family to our sweet girl, and it’s just indescribable. Goosebumps…tears…gratitude..joy. God has surrounded us with His presence, it is clear. Thank you for all your prayers ❤️

The thought at this point is that she’s at the developmental stage of holding breath when upset, coupled with coming off of not so ideal anesthesia (she usually has no problems- and she’s been put under umpteen times!!) is the culprit. Into the evening, she began to perk up and had some more appropriate awake time. Thank you Jesus for this, because if she hadn’t been more responsive and interactive, they were looking at ordering a head CT just to rule out shunt issues. Up until this point, she seemed very out of it neurologically. But she gave us this time of being tired but appropriate which was such a tremendous relief- thank you Lord!! Since then, she felt she just had to initiate her poor night nurse, and thought she’d do it again!! This time dipping into the 50’s and turning blue. She is sleeping now and being closely watched. We are hopeful that tomorrow, the anesthesia will be worn off and we can feel good about moving to the floor!! Praying this is all it is. Thank you all for your prayers ❤️

Room Air!!!

I apologize for my delayed update…I honestly don’t know quite what happened- I guess I got busy!  But I do have many praises to report! Poppy was discharged the Tuesday after Easter, and came home on oxygen.  We actually received excellent care at Benefis in Great Falls! It is truly a comfort to know that quality of care is so close to us- thank you Jesus for the great doctors, nurses, and staff who cared for us.  Even though her care at Benefis was wonderful, it was so nice to be home together again as a family. Hospitalizations are just hard on the family in general, so we feel very blessed to be able to be home all together 🙂

Since coming home, Poppy has been able to gradually wean off of her oxygen! She has been on room air now for about 4 days! Even while she’s sleeping, her oxygen saturations have been sufficient!! Hallelujah! Praise the Lord! Coming home with Poppy on oxygen really put things into perspective.  Poppy already has extra ‘effects’ as Brad and I call them, or accessories, if you will. She has her feeding pump, her med kit, feeding tube supplies in case she pulls her tube..etc..but adding oxygen and a pulse ox (tells us where her oxygen saturations are so that we can adjust her O2 accordingly to insure she is getting the proper amount)!! I mean, I definitely have a new found respect for parents who have kids on oxygen support!! I can’t even communicate just how liberating it is to have her shed these 2 accessories!! 😉

In addition, she is really recovering well from the RSV.  With her being immune-compromised, RSV can be really very dangerous. The doctors were fairly surprised at how well she’s looked through it all. Thank you Jesus for those Synagis shots!! They really seamed to buffer the RSV. The doctors did say that she will hang on to the cough for 6-8 weeks and that she could catch something else on top of it!! Praying she is able to fully recover before something like that happens!

Since being home, Poppy has decided to start swallowing her food! She is doing a great job with her sippy cup and is loving her food squeezed into her mouth! Who would have thought? 😉 Thank you Lord for this major improvement! I am hopeful her intake will increase, so that she will be able to be referred for an intensive tube weaning program that Seattle Children’s offers, so that we could shed even more of her effects!! I know she still has a long way to go, but God’s timing is what we’re on, and He can do anything!!! 😉 Soo incredibly hopeful 🙂 This momma needed this! 😉 Praying for patience and grace in the days ahead.

Tomorrow we head to Seattle. Poppy has routine cardiac transplant check ups, as well as an EEG to check for seizure activity- depending on the results, she may get to start tapering her anti seizure med, and probably the highlight of the trip, her eye surgery! Her eye surgery will be on Wednesday and is for her Esotropia (crossing). The surgery will straighten her eyes, but the real hope is that it will restore some depth perception! We are praying fervently for her depth perception to be restored, because depth perception could only enhance her developmental opportunities!! Thank you all for keeping our darling girl as well as our family in your prayers! We can definitely feel it ❤ God is sooo good!! 🙂

 

RSV

Poppy has been fighting sickness all week. Started out on Monday with fever and vomiting…lots of it…It’s concerning when she’s not able to tolerate feeds, and even MORE concerning when she’s not tolerating meds!!! She relies on her meds- her body NEEDS her meds so that it doesn’t start rejecting her heart!! I had to redose her meds 3 times on Monday!! I called the Transplant Team, and they switched her over to pedialyte from regular formula. She tolerated the switch like a champ, although still urpy for meds.

Tuesday, she got to see Dr. Hardy!! We love him 😊 He is such a Godsend!! He thought she looked really good, considering. Her heart function was great, and he also suggested to give some anti-nausea a half hour before meds to see if that would help. Genius. It’s like, now why didn’t that occur to me?! Thank you Jesus for Dr. Hardy!! Her temp was just under a true fever and I often give Tylenol if she seems uncomfortable…He thought she’s probably just fighting what everyone else seems to have. At the time, her oxygen saturation was at 96%. Typically, she sats right around 99/100%, but considering she’s fighting something, 96% is tolerated.

Wednesday she seemed cranky and tired but had some really good moments of sitting unassisted and reaching for her favorite toys 😊 I was thinking maybe she was on the mend?

Yesterday morning, she spiked another fever, so we had her seen by Dr. Maynard, her pediatrician. Her oxygen saturations were 90ish…She sounded rattley so she also got a chest X-ray and nasal swab to check for infections as well as a nebulizer breathing treatment. After all that, she was tired and fell asleep. That’s when her o2 sats told the story….low 80s when asleep. So, needless to say, we were admitted and her nasal swab came back positive for RSV!!

Because Poppy is immune compromised and medically fragile, she is able to get a shot called Synagis, which provides antibodies for RSV. It is a monthly shot she gets throughout RSV season and she’s gotten every one of them, and it’s proving to be paying off so far! The doctor yesterday said that even though she’s needing oxygen support right now, that she is really doing quite well for having RSV and she expects her case to be very mild compared to what it could be had she not gotten her Synagis shots. And she honestly is quite stable!! Praise God! She is tolerating full feeds and doesn’t even have an IV at this point! She’s had some lab work done to rule out anything further, and is loving the oxygen support l, although not the nasal cannulas as much 😉 She’s not the happiest camper, but she’s a sport and God is always good!! We have been very blessed in her care for this her first MT admission.

They did try to wean her oxygen last night, and she just didn’t tolerate it. She is currently on 1/2 liter and satting in the 90s. They will wean her as she able. Oxygen support is really why we are here, so once she’s off, we can most likely go home!

Thank you all for always praying so fervently for our sweet girl and family. ❤️ It truly means so much to us. Really praying we can be home for Easter! All in God’s perfect timing, as always. Above all, we are thankful for this day that prompts us to reflect on what Christ has done for us when he died on the cross. He died for our sins, so that all who believe in Him, can have eternal life with Him in heaven. I was so blessed by the sweet lady who brought me up my breakfast from the cafeteria this morning. I thanked her for bringing my meal and wished her a good day. She replied by saying, ‘oh yes, it’s Good Friday!’ To that I responded, ‘that’s right, it’s a great day!!’ Indeed it is!! We are forgiven and free!! ❤️ Hallelujah!!

Picture Update!

Poppy’s First Birthday!!

A special time indeed. We are soo incredibly blessed!! Thank you Jesus for this glorious day!!! March 8, 2014

A Gift to be Cherished

A gift to be cherished

Biopsy Results

And the biopsy report shows NO REJECTION!!!! Hallelujah!!! Thank you Jesus!!!!! We couldn’t feel more relieved, blessed, grateful, happy and joyous and ……!!!!!! Homeward bound!!! Woohoo!! Praise The Lord!!! 😊

Cath and Recovery

Today, Poppy underwent her heart cath and biopsy procedure, and things couldn’t have gone better!! Thank you all for praying ❤️ Dr. Rubio (cath doc) said the pressures in her heart are ‘pristine’ and everything else he saw looked really good!! Praise The Lord!! What wonderful things to hear!! He said, ultimately Pathology has the final say, so we should hopefully hear their preliminary report tomorrow.

I asked Dr. Albers (transplant doc) what the odds were of rejection when really everything looks good, labs, numbers, cath pressures etc, and she said usually you do see more than one change occur when it is rejection, but that there have been plenty of times when there have been no changes whatsoever, and rejection has only been picked up at the annual cath within the pathology report. So while we are joyous and hopeful of today’s findings and even just how the day went overall-it honestly couldn’t have gone better, we really won’t know whether she’s in rejection or not until the pathology report comes back. We thank you all for your prayers!! We could definitely feel them 😊 Praying for the ‘ok’ to head home tomorrow!!

Ps: While in recovery (recovery was kind of long!! 4 hours of holding down Poppy’s legs, as they accessed through her groin for the procedure, as well as trying to help her rest- she really did rock the recovery, I think everyone was just tired) anyway, during that time, Poppy drank 2oz of water from a BOTTLE!!! Granted she’d had nothing to eat or drink for 12 hours (we thought, why not try it?!), but even laying down, she was able to suck and swallow 2oz!!! That’s like 60mls!! Only 740mls to go, and she’d be off of her tube!!😊 Purely miraculous!!! Brad and I both had tears….after a long day at the hospital, it was by far the best moment of the day 😊 Thank you for reminding us that anything is possible with You, Lord!! Praying it sticks!!