Post-Op

IMG_1287The surgery went really well yesterday and now our daughter is the owner of a slightly bigger pacemaker with two wires: one that goes into her atrium and one that threads down into her ventricle. It has a built-in defibrillator that will give a shock to restart her heart if it is ever necessary. After putting in the new pacemaker they took advantage of Little being under anesthesia and ran tests to better determine the overall health of her heart. All the results show that it is weaker now than it was when they did the last catheterization a month ago.

IMG_1291While all those things are true, today was actually a good day. It was my birthday and Little made a point of telling everyone who walked into our room. The funny thing was that extra people walked in the room today because the people who found out went and told others on the cardio myopathy team and they made sure to come by and wish me a happy birthday. It was actually very special and I smiled quite a lot for being in the position we’re in. (The smile only disappeared when Little would decide to tell folks how old I am now!)

IMG_1297The “Pacemaker Duo ” as I like to call them (two young gals who manage Little’s device), came in this morning and brought me a birthday brownie. My sweet friend Holly had a cake delivered to our room… a gorgeous and huge cake! My brother came by. My husband and children called and sang to me. My mom sang. And my timeline on Facebook was filled with kind messages representing relationships from all the seasons of my life; beautiful reminders of how He has loved and cared for me all my years. Really, I don’t know how one could ask for a better birthday in the hospital!

IMG_1296And Little had a good day. The pacers seem to be working well together and now we are in the situation where we are trying to find medication that works well with her body and pacers.

Tomorrow will not be as fun. Jeremy will join me for the day and we will be meeting with several members of the transplant team. Her name is not officially on the transplant list but the team wants to go ahead and start the evaluation process so that when we find ourselves in that situation things can move ahead more quickly. It seems we are not in “if we get there” mode but “when we get there.” It could prove to be a long and emotional day. Prayers would be appreciated … and not just prayers for the emotional aspect but also prayers for wisdom as we hear the facts and have to begin to process and make decisions together. Just because a transplant is an option doesn’t mean we can take for granted that it’s the right option. We want to honor God in all we do and say, which now includes the topic of heart transplant… and who is prepared for that? It’s not like you think ahead and say, “Maybe one day this will be where I am and this is what would honor Jesus. ” Right?

So that’s the latest. We are still in the ICU but will hopefully move to “the floor” later today.

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Spoke Too Soon

IMG_1274Don’t know if anyone remembers the last two lines I typed here … I’ll remind you, “I am looking forward to 7 days in my planner with no doctors! Maybe we’ll do something fun that I can write about here.” That was Thursday. You might be wondering, “Are you having fun yet?” No. No we are not.

Jeremy works 4/10s and so he is off on Fridays.  Friday has become our date day and we usually try to go out for breakfast or lunch; when there is a movie we want to see we often try to do that. I had gone out on a limb and bought tickets for a movie last week .. I mean we had JUST seen the doctor so we were in the clear, right? Hardly.

As we arrived at the cinema the doctor called left a message asking how Little was doing.  I called back and left a message saying all was well and headed in to the theatre. We made it through the previews before a call came in from Little’s teacher. It turns out she and Lily had been sitting and talking on the swings and Little suddenly fell backward off the swing. She got up saying, “That was weird. I feel a bit dizzy.”

I called the doctor.
We got our money back for the movie.
We picked Little up from school.
We packed our bags and headed back to Denver per the doctors’ orders.
Seven days became two.

This has been the most frustrating visit because of the sheer lack of information/understanding. Weekends at the hospital are so different anyway but we were here for 24 hours before Little even showed another symptom! They had started her on a new medication and four hours after she took it her heart rate dropped and she got sick; nurses came running from everywhere. She stabled out and then at 1AM had another episode. They changed her dosing and she didn’t have another visible symptom until Sunday night!

I just watched five doctors sit in a circle for 30 min at the desks outside our room. Turns out we’re going to be here several more days. They are going to continue to adjust medications for the next two days and watch to see if they can find a sweet spot that way. If the changes work, we could go home Wednesday!! If this medication won’t work then the next step will be to add a second lead to her pacemaker and that is surgery and who knows what the timeline will look like.

We have two more weeks of school here and then things change dramatically in regard to my ability to be here with Little. We covet the prayers of our Church family.

Please pray:
– For healing of Little’s heart. Wouldn’t that create waves here?
If He chooses not to heal her:
– Medications would work to solve the issues with Little’s heart rate.
– Doctors would know when the time is right to go ahead with a second lead.
– Wisdom for us with how to parent during this time.
– Mercy and grace for Jeremy as he balances home/work without me there.
– Bubba and KB to have understanding of what is happening, patience with
the changes, flexibility.
– My mamma’s heart.
– For Jeremy and I to have faith and to trust our maker.

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We went to the hospital yesterday for a check-up. I packed a bag just in case and then forgot to take it with us. Little asked,  “How long will we stay this time?”

Turns out we only stayed for three hours, we just accomplished a LOT into those three hours. (I am not going to explain everything in too much detail. . . just listing everything as a means of record.)

1. Little got an EKG – good news: the length of her GTCs has decreased with the adjust meant of her medication and so we will be able to continue giving her the medicine that helps her to sleep!

2. Little got an Echocardiogram – good news: the clot in her heart has shrunk a great deal! I personally couldn’t see it any more and Dr. M said she had to really squint to see it was there.

IMG_12553. They checked the information stored on the pacemaker – bad news: Little is still experiencing random bouts of arrhythmia. These are not long and not consistent but they are present. Little was hooked up to a Holter Monitor and told to keep it on for the next 24 hours. This device monitors the electrical activity of the cardiovascular system for extended periods of time. Little was just excited to have an excuse to skip her bath!

4. Dr. C came and checked the incision from the pacemaker’s placement – good news: the blood thinner Little is taking could have caused a pool of blood to gather behind the pacemaker and it looks like that is minimal if present at all!

5. Little is going to be a part of a clinical trial being done at Children’s Hospital and she got all signed up for that and all the blood drawn that’s needed – good news: she was already having blood drawn and so this trial didn’t add any additional drama to our visit!

Some people have asked about our other children and how they are doing. Bubba has reacted as one would expect a boy on the autism spectrum to react; he has a hard time with emotions and social cues and so he has listened to reports and responded matter-of-factly. My sister being here was so wonderful for many reasons but especially in regard to him. She said he would walk over and hug her and tell her he loved her. . . that’s the kind of thing that lets me know more is going on inside than can be seen with a glance.

KB is all heart and as compassionate as they come. She has listened attentively to all information and told her sister, “I couldn’t sleep I was so worried.” She has held Little’s hand while she’s gotten her shots, looked at the details of Little’s monitor and asked questions, and snuggled in a bit closer before bed at night.

Funny – Little had a visit to the Orthopedist on the calendar for Monday and so we went ahead and went. First thing they did was take a full body X-ray and so Little got to see her pacemaker sitting in her chest. She was fascinated. . . as was Dr. H who exclaimed, “THAT wasn’t there last time!!!”

We also had a visit to the Orthodontist today for a spacer to be put in (3 min. visit!) and Little walked in saying, “LOOK! I got a pacemaker since I saw you!”

I am looking forward to 7 days in my planner with no doctors! Maybe we’ll do something fun that I can write about here.

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What Prayer Does

Lily

It is crazy that less than 48 hours ago I was told to call my husband and have him get here as quickly as possible. It is crazy to think that there were eight doctors piled in our room and another handful standing outside waiting to hear what to do.  I am thankful to KNOW that many people were praying for us around the world because, honestly, 48 hours ago the only prayer I was able to pray was, “O Lord. O Lord. O Lord.”

Just wanted to record how God answered those many prayers so that I’ll never forget this time the Lord took care of our Little.

So, all those medications I listed off in my last post? Those were administered through a PICC line and two IVs. I was asked to leave the room just before they were going to put the PICC line in and I was glad to leave; I knew I would cry and be no help. Turns out that  before the line could be put in, Dr. Miyamoto decided to “try one thing just to see what would happen.” She had the technician turn up Little’s pacemaker to see if it would correct the arrhythmia … and it did. I didn’t know until later but they put the pacemaker up to 90 and almost immediately the spikes to 175 and higher stopped.

No one can explain why it worked.
I know why.
The doctor is not even sure why she thought to do it.
I know why.

I like to refer to it as a providentially inspired “Hail Mary” that God used to miraculously save our Little.

And now she is stable, back to her normal color, eating like a champ, out of ICU, making jokes and laughing, weaned off the IV medication, and moving toward home.

That’s what prayer does.

 

 

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Just The Facts, Ma’am

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“Your way, O God, is holy.
What god is great like our God?
You are the God who works wonders;”
Psalm 77

This will not be clever. I am just too tired and so this will be a straight forward update.

I brought Little to get her pacemaker checked and sutures trimmed today. It was a routine one-week follow-up appointment and was supposed to take 20 min. max but I packed a bag and was prepared to stay.  Little threw up Sunday and Monday and had been without color for 24 hours; I knew something was wrong.

In the clinic they checked her pacemaker and by the end of our 20 min. appointment we had been admitted. Turns out there were all these spikes in her heart rate – incredibly high. They admitted us to the CICU so that they could readily access all the tests they wanted to do and be ready to deal with any surprises. The echocardiogram shows her heart is bigger and weaker than before and the top chamber isn’t communicating with the bottom chamber when her rate goes high…which it keeps doing.  She has a blood clot attached to the pacemaker “lead” and they think that might be what is causing the spikes in heart rate. Her oxygen intake is low since the heart isn’t pumping enough blood; it’s backing up into her lungs.

I am tense.

They have started meds to help get rid of the clot. They have started a medicine that makes the heart pump. They have started a medicine to lower the heart rate. Now we wait. She is quiet and tired.

I am sad.

The younger two kiddos are home and a friend from ELIC is staying with them.  My sister has purchased a ticket and flies in tomorrow morning (a MAJOR  gift since she HATES to fly). I haven’t had a chance to talk to my mom yet. My friend Debbie sent me the passage with which I have bookended this post.

I am trusting.

“Your way, O God, is holy.
What god is great like our God?
You are the God who works wonders;”
Psalm 77

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Little’s Big Heart Cath

IMG_1131It has been a long day! We had to leave our house by 6:45 to get to the hospital for an 8:00 AM check-in and we’ve been going ever since. I was shocked by how nervous Little was and by how it showed … she didn’t talk! That’s right, SILENCE was the coping mechanism of choice.  I was perfectly calm until she started doing that and then I found myself freaking out a bit.

Then they gave Little Valium to help relax her and all of a sudden her lips were loosened and she felt free to share how nervous she was. The medicine continued to kick in and she started crying too. Then more people started piling into the room … a tech started an echocardiogram, the anesthesiologist explained what would be happening and then asked the tech multiple questions about what was showing up on the echo, the cardiologist came in with two teenagers who were shadowing her today and then the nurse came in to see if we were all ready. Little closed her eyes and shook.

At that point Dr. Miyamoto asked me to join her outside the room and she proceeded to prepare me for the worst. She explained that she was nervous about the procedure and promised to stop at the first sign of a problem. She explained what steps they would take if Little’s heart were to stop beating. Bottom line? She freaked me out. I held it together long enough to dress up in a surgical “bunny suit” (think Stay Puff Marshmallow Man) and be with Little as she fell asleep and then I headed to the waiting area where I closed my eyes and shook.

The one hour procedure took 2.5 hours and then Dr. Miyamoto joined me in the waiting room, her head was shaking as she sat down beside me. So, she was fully expecting to go in and find conditions in the heart that would mean our follow-up conversation would be all about heart transplants; turns out nothing was as bad as she was expecting. It seems Little’s “sinus node” is broken — that’s her God-given pace maker. They put in a lead through her groin and up to her heart, set a healthy heart rate/pace and watched as all her numbers evened out and she began to look … WELL. Recommendation?  A pacemaker to be put in early next week. (As in, potentially Tuesday)

The question remains as to why this is happening. No one is sure if cardiac disease caused the sinus node malfunction or if the sinus node malfunction caused the cardiac weakness. A biopsy of the heart was taken during the catheterization today and will be tested for disease. A genetic panel will be done too to see what shows up on that front. There is one other test they want to do, a special type of EKG, but that will be done at a later date — a pacemaker takes precedence.

We are spending the night at the hospital tonight and there has been discussion about keeping us here until the procedure next week (it is NOT a surgery). There is also discussion about how it is silly to keep us here for that long. Little and I are learning together about having an open hand.

Thank you for praying for us. Little’s heart keeps leaving the medical staff completely flummoxed and I truly believe the anomalies are results of prayer.

During these two months I have often found myself on the verge of freaking out. There have been verses I’ve quoted and Truth I’ve claimed but I want to leave you with one song I keep singing over and over. And then I’m off to close my eyes … and sleep.

“But I know whom I have believèd,
And am persuaded that He is able
To keep that which I’ve committed
Unto Him against that day.”

Daniel Whittle

 

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HIS plans. My phone. HIS people.

Screen Shot 2018-04-23 at 10.59.13 PMAnyone who knows me will hear the phrase, “I like setting goals” as an understatement. The amount of joy I get from making a list of plans is truly ridiculous. It’s my favorite thing about New Year’s day and a refreshed list is the reason I don’t mind Monday mornings. I’m  not sure when this love started but it’s been going on for a loooong time.

Little’s atypical development first became evident before she was even four months old. She was diagnosed with Agenesis of the Corpus Callosum at a year and setting goals took on a new level of intensity. I would sit down every six months and pull out the book that listed developmental milestones. I would write down the next set, or move forward those that had yet to be met, and think through ways that we could work with Little to move her forward. Initially there were a lot of phone calls to organizations and therapists who were then able to give us clear directions and specific actions that would help our Little
as she grew and developed.


Together with her speech therapist we taught her how to chew. Together with the physical therapist we taught her to crawl, sit, stand, and eventually walk. There was occupational therapy, listening therapy, aqua therapy, music therapy, developmental therapy, and hippo-therapy (horses)! For years there was always another goal to meet, always another milestone to aim for, always a plan to work.

This past January I sat down to do my prayer and planning time and I felt convicted about the lack of effort I had been putting into the development of my children. 2017 felt like such a waste of a year; back pain had kept me laying flat for most of the duration and I felt my family had paid a high price. I prayed. I planned. I wrote pretty goals. . . somewhere.  I can’t for the life of me remember where I put all this work and beauty. I only remember that I told Jeremy, “I really feel like Little has been floating along and I have lowered my expectations for her.  This year needs to be different.  I want to be more purposeful and more present when it comes to Little in 2018.” Good grief.

The irony that I can’t find my plan for 2018 is not lost on me; suffice it to say that the reality looks nothing like the dream anyway. Each week I find myself sitting with my planner and a list of phone calls that need to be made; calls to people who can give us clear directions and specific actions that will help our Little in this new stage of growth and development. I find myself needing to be very purposeful and remarkably present! Where there were once therapists of all shapes and sizes, the calls now include Cardiologists, Orthopedists, Dentists, and Medical Supply companies! And just as the Lord put people the right people for the right time into our lives in all those early years, He is leading us to His right choices once again.

Little had her MRI on April 10 and the Anesthesiologist/Cardiologist was unbelievable.  He spelled out all the risks for me and spoke with compassion and transparency.  It was amazing to hear what he would be doing over the course of the “study” (stopping Little’s lungs so that clear images could be taken of her heart and then restarting her lungs to allow a couple of minutes of breathing before stopping them again, etc.). Hearing this had the potential to be terrifying but he calmly assured me that my daughter would be under his constant watch and care. The “study” was supposed to take 1.5 hours but ended up taking three and he made sure to keep me updated and then came out personally to fill me in on her condition and how everything had gone. I had been watching and that had NOT been happening for others in the waiting room.  Dr. Nichols was HIS right choice for us.

The Director of the Cardiomyopathy Program was on call when Little was first admitted to Children’s back in February and so she has been on Little’s case ever since.  During the MRI, Dr. Miyamoto came to check on Little twice and even sat with me for a bit to talk about how I was doing and how I was feeling about where we are in Little’s treatment.  She is HIS wonderful right choice for us and you can “meet” her here:

We had our check-up with Dr. Miyamoto this past Wednesday and discussed the results of Little’s MRI.  The brain scan showed that she still has no corpus callosum *wink*. The scan of Little’s big heart confirmed that the left ventricle is operating at 25% and the right ventricle is operating at 30%. The characteristics that they were looking for to determine if she had a specific heart disease were not present so… she does not have Right Ventricular Hypertrophy and we are glad for that. This does mean that we still don’t have any more understanding of what and why this is happening and during this visit the doctors became more concerned about Little’s lungs.

The phone calls I have been making this week have included calls to the scheduler at Children’s so that we could schedule a Heart Catheter. There have been calls to several PA’s in the heart clinic and we have been working with Little’s meds to try to get excess fluid out of her lungs and get her ready to be put to sleep again this Friday. They will insert the catheter through an artery in her hip and follow it up to her heart.  The purpose is to measure the pressure in her heart and her lungs. There are risks that come with this procedure, the anesthesia being the greatest one. Please pray that Little’s heart will maintain a steady beat and that the doctor will be able to get a quick and accurate reading. (We just found out today that Dr. Miyamoto will be doing the procedure and my heart rejoiced.)

We are taking a bag with us on Friday. The doctor says that the procedure could be quick and the results could be encouraging which would end in us going home. Depending on the pressure readings, we could end up staying at the hospital as they consider treatment and next steps. Either way, the doctor believes that this “heart cath” will enable us to have a better picture of Little’s prognosis and help determine clear directions and specific actions as we continue to walk through 2018.

More calls have been made and more will be made tomorrow but this post has gotten exorbitantly long! Remember to pray for Little when you brush your teeth… and in that vein come back to read a great story about a phone call with HIS right dentist.

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