One more week

We are at an interesting spot in the waiting.. She may be getting at the end of it and getting better.. or there may still be infection and we may need to move towards PICC line/IV antibiotics and then surgery. Each day that this infection lingers, it points to the theory that it is in fact a mesh infection. Otherwise they think it should have cleared up more quickly. But it also could be almost all healed. The tricky thing about a Gortex mesh infection is that it doesn’t always show up on scans. They can see when there is a fluid sac/abscess.. but if it is just infection on the surface of the mesh – that doesn’t show up clearly, so they have to go by symptoms like the blood work and what they do see. We have this strange redness and oozing puss at the initial surgical repair site. When they opened it up and cleaned it out, there wasn’t much puss inside. So where is the puss coming from that is oozing out each day? The site is getting smaller and I think it looks slightly better, but maybe 30% better than before. The doctor couldn’t really tell until I showed him photos of the previous days. So it improving.. very slowly. Typically, this should have looked ALOT better already. So why isn’t it? It’s the unknowns that will drive you crazy. He added a silver-based material to put in the dressing that will promote topical healing, and we will stay on Bactrim for another week. The hives have stopped, thankfully. Then next Thursday we will see where we are, and decide if we start PICC line/IV or talk surgery. If it looks a lot better, than we can stay on antibiotics and take labs and hopefully be at the end of this journey.

I don’t want to face another surgery. Honestly, I am terrified of this prospect. As he explained to me, they would remove all the mesh inside of her, and since it is not a sterile field – they have limited options if they can’t repair her hernia with her existing tissue. They would take some muscle tissue from her side and use that. That makes it a more difficult surgery and it would also be done open, because of the many issues due to scar tissue. Currently, part of her spleen and part of her colon adhered to the mesh material. They would need to separate those organs from the mesh to remove it. Again, tricky. (I.E. Terrifying).

But then you look at her, and she doesn’t seem sick. She has weird joint pains that could be from the long term antibiotics.. but otherwise is pretty much her normal self.

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I could be worrying about a surgery that will not happen. She could be getting better. She can kick out the infection just with antibiotics. God can continue to heal her. This may happen with or without surgery. Doctors have to always to prepare you for the worst case, what could come down the road, and it is so hard to see that road which is an intersection ahead, but not to get ahead. To stay exactly where we are and just keep praying. We have 7 more days to petition God that surgery wouldn’t be the avenue we take, and if it is – for him to go ahead and prepare the way for us. That it will be clear next week that she is improving. Praying for wisdom in these decisions and for the surgeons, or wisdom to push to stay the course with antibiotics. That God would continue to protect Finley and keep her healthy and safe.

Ironically, if you would have asked me the list of things that could happen with CDH that I was worrying about – this was not on the list. I didn’t even have this on my radar.

Peace is what I am trying to find… Clinging tightly to the Father, because I can’t do any of this by my strength. So if you could pray for this mama to not be scared too, I’d appreciate it. I will hold to peace today by staying out of what can come down the road, and stay right where we are.

“Peace, be still.. and know that I am God.”

In the waiting…

Well, it’s almost been a month since the “eviction” and we are at still doing battle against the infection. Darn squatters.

Finley has another ultrasound on 2/2 to take a look to see where we are at. It is still oozing puss (sorry for the visual) and is super sensitive to the touch, and the daily bandage changes weren’t helping. But thankfully, my amazing nurse friends chimed in on Facebook yesterday and gave me some new options that should make this much easier. So thankful for our community/village of people. This is exactly why we need each other – just the support, advice, and support- it all means so much. I feel so completely loved through this journey right now.

I know even when I don’t see improvement.. the infection is shrinking.. each time we look it is smaller.. I just don’t see the changes. We so often don’t trust when we can’t see with our eyes.. but that is what trust requires of us. That is the definition of faith.. trusting the unseen. This doesn’t come naturally to me, but God is growing me in this area.

It’s not in my timing, but it seldom is.  In the waiting, I have found myself pressing deeper into the Word, searching for Him, spending more time in prayer and he is teaching me so much.

Today, Finley started developing hives. She has developed an allergic reaction to the Amoxicillian. I could cry that it’s just one more development in this crazy, frustrating medical drama, or I can laugh. I know God has her and it’s going to be ok. There is another antibiotic we can move to (Bactrim), and I think it will be for the best. Or there will be another option. This is so completely frustrating, but it’s also not a bunch of other things that are a whole lot worse- and for that, I am thankful. That she isn’t in pain all the time, and that for the most part, she is able to go about her normal life.

A couple weeks ago, I did not have this kind of peace. I have so much gratitude because we have felt God with us during this hard time, and that is what blessing means. Our pastor says that “blessing is not the absence of pain, or the presence of physical comfort, but the fact that God is with you through it all.” There are so many people praying for Finley. Again. I am so thankful for every single prayer. For every single good thought our direction.  She has an ultrasound on Thursday and an in-clinic appointment. I am hopeful they will tell us that the internal part of the infection is gone, but even if it’s not.. I know there will come a day very soon – when IT WILL be gone, and I am already praising God for that day.

Thursday: Eviction date!

Happy New Year!

The eviction date is set. Thursday 1/5/17 all bacteria residing in a cozy 1 room, walled up pocket below the left diaphragm must evacuate and depart Finley Anabelle. You were not invited and have ignored repeated requests to leave. So we are getting some muscle to help us get you out. You aren’t getting the complete message Clindamycin has been sending for over a month now. We want you gone. Get out.

9:45 check in, she will be be put under general anesthesia and Interventional Radiology will use CT to guide them as they take out the contents of her “sack o infection.” They will send out cultures to see if this gives us more knowledge. She will be there 4-5 hours including some recovery time, and then we get to go home. One week later, we will return for another ultrasound to see if it is entirely gone (and that the buggers haven’t tried to move back in), and then hopefully we will be able to go off antibiotics. I am worried she is starting to get resistant to this one, as the redness seems to be returning to her incision site.

We would appreciate prayers for this procedure to remove all infection from her body and for her to be restored to 100% health, for no complications from GA, and peace and freedom from anxiety for Finley (and mama).

 

Finley always likes to be unique….

We went back for the follow up CT scan on 12/6. That was a traumatic experience in and of itself because it took 2 hours, and 4 tries to get her IV started. Finley is starting to develop some fear around procedures. The CT revealed that she still had a pocket of infection so another course of 2 weeks on the antibiotics.

We had a follow up ultrasound yesterday and that pesky pocket of infection is still there. It is smaller, and the surrounding tissue is no longer inflamed. Her spleen is back to normal. But, this pocket, abscess, whatever it is – likes Finley and doesn’t want to leave so we are going to have to get more serious about this eviction process. We will keep taking the antibiotics and after the holidays Finley will have to go in and be put under general anesthesia so that interventional radiology can drain it while she is in the CT machine. They will culture it and see if they can get any answers, but being that she will have been on antibiotics for a month – they may not get good bacterial growth. Then we will watch to see if it tries to come back.

We still don’t know the why. But the fact that this isn’t resolving makes them more seriously consider that this has something to do with the man made material in her body. This is really quite strange and doesn’t make any sense – but it’s what we got. I am continuing to trust in God’s plan and timing.

She isn’t in any pain. Her body has walled off the infection well. I am continuing to pray for her health and healing. Please also keep praying that she won’t develop any complications from the antibiotics and that they will keep working. I don’t understand this, but I rest in the fact that I KNOW God’s got this. His hand has been upon us every step of the way, and though he hasn’t answered with the timing of the healing I have been asking for, I am trusting him. Sometimes his answer is, not yet. I will keep asking, keep praying, and thanking him for all that he has already done in her life, and all that he will do.

2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

 

Not quite….

This update is a little overdue.

Well, it wasn’t ‘just’ viruses as we had hoped.. After my last post, Finley started developing a lump on her back. It was exactly at a spot of one of her surgical repair incisions. I noticed it at bedtime as I set her down and she cried out in pain that her back hurt. I lifted her shirt to see a very noticeable lump. I took some photos and called the nurse advice line. I worried that it had something to do with her spleen. Thankfully, my pediatrician was the one on call that night and he agreed we should have her looked at right away, so off to the ER we went. After many hours (Finley now knowing how Child Life works – kept asking for toys), an IV line started, blood drawn, and a lengthy ultrasound it was determined that this was a pocket of fluid, or fibrous tissue and therefore non emergent. We were sent home with an follow up appointment with the pediatric surgeon as this was probably related to the fluid pocket that was supposed to be bowel…

Two days later back, we got to meet the only Pediatric Surgeon in the practice we didn’t already know. The lump was now redder and causing her great pain. He decided to start her on high dosage antibiotics 3x a day for 1 week. It looked like an infection to them, which didn’t make any sense since you don’t develop “post-surgical” infections six years later. They looked at all the scans and the pocket and this lump lined up, so it seemed the infection was taking the path of least resistance and working it’s way out. Again, it made no logical sense though for the infection to be where it was. But if it walks a like a duck….

It took several days for the lump to improve. In the meantime, it got redder – finally on day four I noticed improvement. We had a follow up appointment on day six and they were satisfied with the response, but still baffled. It is not clear why this happened. We don’t know if this is what was causing the low grade fevers for the past six weeks and pain in the mid section (which is not where the lump was). I like things to make sense and understand why things happen. Finley is on day three with no elevated temperature, of which I am very thankful. We will have follow up blood work in two weeks, and potentially another CT scan to make sure the pocket is gone. There may be a follow up with GI. I am going to continue to pray for all the infection to be gone and not to come back. In faith, I am going to claim healing for Finley and continue to ask for his provision and protection over her. In the hospital when they first found the ‘pocket’ the doctor dismissed infection because he said “she would be sicker.” Part of me wonders, if she wasn’t sicker because God was protecting her. Whatever the case, I am just filled with so much gratitude that we had many eyes on her, and even though this was very scary for me – she is fine. I am so very thankful that we are so close to world class medical care and are covered in prayer by so many. I am also thankful that we have really great insurance.

Finley seems to be back to 100% herself. No more pain and back to normal. She will have a few more weeks before we allow her to resume PE, Gymnastics, and full combat activities to allow her spleen to go back to normal size.

I am still processing the last month. The roller coaster of emotions, the wrestling with fear.. it’s like I have an emotional hangover. I like answers and things to be clear – but I may not get that. I have to be ok with not knowing, and just TRUST (there’s that word again) that she is ok, will be ok… and not fear the unknown lurking inside her body. It’s an on-going lesson for me. Trust in him, and lean not on my own understanding.

Ok, I hear you God. You always had us in your palm.

Proverbs 3:5-6

Trust in the Lord with all your heart,
    and do not lean on your own understanding.
 In all your ways acknowledge him,
    and he will make straight your paths.”

 

Viruses and relief

It all feels so anti-climatic. Which is so truly wonderful. It is nothing serious, and it feels exactly like answered prayers. We are still waiting on the results from the CMV/EBV panel, but what the doctors are currently leaning towards is this… Miss Finley most likely had a virus (like EBV) for the past month that was causing all the strange symptoms. Then she picked up another virus (rhino or entero- which she tested positive for), and that is what was creating the high fever – which looked like her getting “worse.”

So hurray for viruses! They certainly can be nasty and wreak all sorts of havoc.. but I will take them over the scary things that were on the table. I have so much gratitude to be on the other side of the waiting and fear and to be filled with relief. At one point there were concerns after the CT that she had an abscess or infection near her repair site, due to what looked like a pocket of fluid. I am ever so thankful for Dr Krishnaswami for coming in personally to look at her scans, confirm what he suspected with another X-Ray, and then to talk me through everything. He was near certain that the “fluid” was actually part of her bowel/colon. CDH kids always have things that aren’t typical in their anatomy due to their repairs. Finley has a section of bowel wrapped behind or around her spleen, and her spleen is partially adhered to her repair area via scar tissue. It was so comforting to have someone that knew Finley’s case so well to weigh in.

As of today, she is back to bouncing between normal and slightly elevated (100.2).. which makes me feel like we are on the other side of the nasty virus. I am thankful for her strong immune system that is doing really well. Thankful for all the X-Rays and scans that tell us that she is perfectly healthy (except for those viruses). I am thankful for Randall Children’s Hospital and the amazing people there and all our friends that rallied in prayer, and meeting tangible physical needs. It was weird being on the other side again.. being the one getting help, instead of being the help. I so appreciated every cup of coffee, froyo, meals… and all the messages, texts, calls, and encouragement. We felt very loved.

Finley will need to be very careful for the next month due to her enlarged spleen. Any big fall/impact could risk a rupture, so she will be keeping her feet on the ground for a few weeks. We have follow ups in a month to check to make sure her spleen goes back down to normal size and that her CBC levels have normalized.

Here’s hoping I don’t have another update for a long time.. unless it’s to post cute photos of Finley being awesome.

The unknowing place

Unknowing. “A lack of awareness or knowledge.”

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That is the place we are in right now. AKA the waiting place. I’ve been here before. But it doesn’t get any easier. Much of the last week I have been wrestling and fighting my mind. The fear tries to be louder than my faith, than the truth. The lies whisper to my fragile, war torn soul and it whispers the fears that have never left me, but were pushed back.. Muted. I was able to live with them, and push them back.. but they never left me.

 

I recently told a friend that I have accepted fear/anxiety as the thorn in my side. The reminder that I am not all-able and in control. The thing that reminds me that I DO need God – that when those lies crop up, I have to intentionally call it the lie that it is, and pray. Most of the time, it’s not an all consuming task. For a few days this week, I have had little energy for anything else. And then the results of her ultrasound came back. Fear had told me that there was going to be something wrong with her bile duct. Maybe something with her kidneys.. because I had BELIEVED that she was fine.. that I went off high alert and trusted and stopped worrying about those things. The lie SHOUTED that my trust was misplaced. When I heard the doctor say the scans were clear while seated amongst a sea of other parents watching their children do gymnastics – My soul audibly sighed such amazing relief. They were lies. Lies, that I did bring to God and that kept me praying for the better part of the school day for 2 days.. but they were lies. Something shifted then. The pit in my stomach lifted. When I get stressed, my appetite runs for the hills. My fragile, about to burst into tears if someone looked at me with too much compassion, state thickened. It was as if God audibly hugged me.

 

See? I’m here. You got the results quickly. This is not what’s wrong with her.

 

You worried needlessly.

 

We still don’t know what is wrong in her little body, but today I feel stronger. It’s not her bile duct, her CDH repair site, and it’s not Wilm’s tumor. The things I know to fear are off the table.

 

I am so thankful for the multitude of prayers covering us. The reminders that God is in the with us. He will see us to the other side of this, and maybe that’s another miracle where he heals her. Maybe he will use the doctors and we will be able to glorify God in the midst of a storm (If I have a choice here though God, I’d like to order a small gale…). No hurricanes please.

 

I will cling that he has a purpose and plan for Finley’s life.

 

His timing is ALWAYS perfect.

 

He has had his hand on Finley since before the beginning of time and loves her more, which is something that I have a hard time comprehending. My selfish mama heart just knows that I LOVE her absolutely and completely and I want all the days with her. I go to the worst place because I have stood at the cliff of the Shadow of Death. It is a scary place. But I am not alone in this unknowing place…just waiting. Knowing that God does some amazing things in the waiting, though I like to fight him. Apparently, I need lots of reminders that I am not in control. He still has much refining to do in me.

So in the waiting, we pray for complete healing of any infection or inflammation. Praying for her stomach and intestines to be healthy. Waiting and praying for the GI doctor to call and schedule our appointment for sooner and that he won’t find anything serious going on inside of her.