Recovery

I had asked prior to surgery, ‘so it must be pressing if you want to take her to the OR at 10pm (this is at 4pm)…’ granted, I had seen the images and could see the changes- I was probably asking more for validation…The answer I got was, ‘it’s only been 4 days since her last scan, and all of her ventricles are significantly bigger when comparing today’s scan to the last scan. If Poppy wasn’t so sick, we could wait until morning, but her ventricles have grown so much in such a short time frame, we feel confident that the shunt has malfunctioned and we should take her as soon as she has fasted for long enough.’ I figured, but had to be sure. So so bummed this is happening to my girl who had been through so much. Just sick to my stomach, anxious, and honestly truly sad that I would be sending Brad and Crosby home for the night, once again our family separated…and Crosby melting down because his mom and new sister weren’t coming with 😦 Ugh….breaks my heart every time- even just thinking about it makes me well up.

Anyway…

Poppy got a late start to the OR last night. She didn’t end up going in until around midnight. I didn’t mind a bit- this meant her anti rejection meds could be in on time, not to mention the fact that I will NEVER turn down cuddle time!

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Walking her to the OR

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Around 1am, Dr. Lee, the attending neurosurgeon came to tell me about how things were going. It was the exact same problem as last time. (So there are 3 main components to the shunt- the catheter that goes into the ventricle, the valve that sits outside and creates the bump on her head, and the drain that runs along the side of her body into her peritoneum.) The valve itself was clogged with blood just like the last time. In the scheme of things, this was great news because all they had to replace was the valve. She said the same thing as far as shunts go that I keep hearing and reading…’some kids can have theirs with no problems for 10-15 years, while other kids can have as many as 12 revisions in one year- it really comes down to luck and Poppy has so far just had really bad luck.’ I could tell she was disappointed to have had to put Poppy through another surgery, but was glad they were able to tackle it promptly.

Poppy came back to her room around 3am resting comfortably. She had brief wake period through the early morning, and seemed to move her eyes and head really well. She’s been resting ever since. Thank you Jesus!! Typically, most patients would be discharged today after a surgery like this, but because this is Poppy, it’s sounding like they want to keep her 12-24hrs post-op. I guess I can’t blame them, and I want what’s best for her of course. But I may try to add merit to the fact that I have caught each malfunction and see if they would let her go later on the evening since I’m soo good 😉 Wishful thinking, I know but I guess we will see how the day goes.

Once again, thank you all for your never ending prayers for our sweet girl. It’s as if you all are riding this crazy roller coaster ride with us, and it’s honestly comforting to have such loving support. We pray that she continues to rock her recovery and for her shunt to last her years!!

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Ahhh!!!!

So Poppy earned herself another CT scan today. She had vomited a couple times yesterday, then today at lab she was hysterical just in the waiting area and then fast asleep, then hysterical, the fast asleep. I thought, since we’re here, may as well have neurology check her even though we are supposed to come in for a check on Thursday. I thought I’m probably being crazy, but? Neuro was glad we checked in and they thought given her history, lets scan her. Sure enough….

When I saw the neurosurgeon, I knew….ahhhhh!! Shunt malfunction…..AGAIN!!!!! She’ll be going into the OR around 10:00pm. Needless to say we could scream!! Poor baby girl 😦 you can tell she’s uncomfortable 😦

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Please pray for us-we are beyond weary. Please Lord grant us peace and Poppy safety. You have this Lord-help us to rest in You.

Out of the OR…again!

Poppy came out of the OR this evening looking really good!!! Hallelujah!! The surgeons found her shunt clogged with blood, and were really glad they went in, because the shunt wasn’t working at all. They replaced the catheter itself, and were able to leave the line that goes down the side of her body into her peritoneum and just attach it to a new catheter. So far they are very pleased with how things went! She even came back with no breathing tube!! Thank you Lord!! They will watch her closely the next day or so! She is tucked in tight right now and resting comfortably. Thank you all for praying!! Keep it up!! God is good 🙂

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Back to the OR….again

Poppy had rough night. She was super fussy and a little vomitty. Her ND tube
(feeding tube) was also trying to find the proper placement in the duodenum, but was getting caught in her tummy all day/evening, it didn’t finally migrate to her duodenum until around midnight. Because she’s not used to her tube being in her tummy, we all thought this irritability and vomiting was due to her tube not quite in the correct spot. She honestly cried for 7 hours last night, nothing seemed to help. And just to add, Poppy is not colicky, she is typically a very sweet and chill baby- very very consolable. Finally she passed out around midnight. Totally thought it was all about her feeds and gas and…and..and. She was the same neurologically, so….

This morning the nurse practitioner from neurology came to check in. Poppy was fussy and had vomited a couple of times. I told her about the feeding tube ordeal and she said, ‘lets just rule out that its not her shunt!’ Brad and I were impressed that she was willing to be so thorough, especially on our way out the door…or so we thought.

Scans came back to show the ventricle that we came in for originally was so far holding! So that’s really good!!! They will continue to monitor it closely, but for now it seems that the external drain that was placed emergently Thursday and later taken out yesterday, was just what she needed. Praise God!

But, the ventricles that were always draining and were looking really good upon arrival of this hospital stay, are now at least 50% bigger than they were 2 days ago, and there is blood around the shunt itself. The only way to solve this problem is to go in and replace whatever part of the shunt system is clogged from the blood. 😦 So, in true ‘Poppy fashion,’ here she goes to the OR again…!!!!! Ahhh!!! She goes in an hour. We are learning first hand what it means for your kiddo to have a shunt. Life with a shunt can be this way- some malfunction, some last 6 weeks/months, 3 years, 15 years, no rhyme or reason- it’s just the way of having a vp shunt, and it’s worth it of course because it’s saving her life.

We are so disappointed that she is heading back in to neurosurgery, but at the same time, we are so very grateful this was caught while we were still here in the CICU-thank you Jesus for providing such thorough top notch care for our girl.

We are praying for a safe, timely, and successful surgery for our girl- for her to come back without a breathing tube, and for her brain to find some relief and drain perfectly!!

Romans 12:12 -my favorite
‘Be joyful in hope, patient in affliction, and faithful in prayer.’

Lord, we don’t understand why..what the reason is for all of this…this rough course Poppy has been on, but we do know that You have this, we have seen You at work in so many ways and as we always strive to do, we cling to You and Your love and goodness. We know Your will is best and we bring you glory in all things, because You love us so. Lord, we ask You to please guide the hands of the medical staff and protect our daughter from harm. We pray for a successful trip to the OR, and for a speedy recovery. Please surround us with Your presence and may we find rest in Your Divine peace. Amen.

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Wait and Watch

Poppy seems to be getting back to herself more and more each day!! Praise the Lord!! Hallelujah!! So far, the neurology team is not completely convinced that Poppy needs a second shunt. Over the last couple of days, they have been changing the settings on the drain to see how she acts with each setting, truthfully it’s been hard to tell a difference between having the drain clamped and having it open, and when it’s open, she’s been draining what any other baby would drain. The thought is that this accumulation of fluid came on over some time, and since it’s really a gray area from neuro’s perspective, as far as what will be best for her long term, they want to wait and watch before committing her to another vp shunt.

With that said, we may be able to go home tomorrow!!!! Praying praying this is the case!!! They just took out her external shunt at the bedside- soo crazy to watch!! The idea is that we will watch her very closely at home and come in right away if things change. Otherwise, we will be in clinic next week for a CT to check on everything.

We are soo so thrilled to see our sweet girl coming back to us- it’s just truly amazing!!! Such a precious gift!! We will be praying that Poppy will continue to improve and never need an additional shunt. Thank you all for joining us on our knees in prayer during this roller coaster ride- it truly means so much to have such loving prayerful support.

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A Better Night

Thank you all for praying so fervently!! This evening, Poppy has started to improve!! She has started to track again and she’s content to be awake!!!! Her eyes aren’t quite moving exactly together yet, but she’s happy being awake and can focus on me- I’ll take it!!!! 😀 Woohoo!! Hallelujah!!!! Thank you Jesus for Your faithfulness!! We are excited to see what tomorrow may hold!!

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Shunt Revision 8am

Poppy will go to neurosurgery tomorrow morning at 8am to reposition her vp shunt in hopes that this blocked ventricle is blocked because of the shunts current position. After surgery, they will see if the new position is all that is needed to get sufficient drainage from all of the ventricles. If not, and the ventricle is still unable to drain, then she will have a second vp shunt put in (so she could have 1 on each side). A second shunt would mean yet another trip to neurosurgery and essentially double the infection risk that is already higher due to her immunosuppression.

We are praying for a single shunt to do the job as well as a smooth and speedy recovery with no infection!! Please continue to keep our family in your prayers- while we know that God has it ALL, and she is safe in His arms, we are just so physically exhausted and mentally weary. Brad and Crosby are on their way back from MT today, so prayers for safe travels would be awesome as well.

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