Pectus Surgery - 3 Week Post Op appointment

Today, we had a post op appointment with Dr. Garcia.

He says Thomas is doing great!   I can't agree more.  He is still in pain, but mainly when he does too much.   He is only taking a mild muscle relaxer and regular doses of Ibuprofen as needed. 
He has had 1 Oxycodone and  1 Valium since the day we came home from Cincinnati.  That was only because he did too much the day before and woke up in extra pain.

They removed his remaining steri strips, took after pictures, and watched his range of movement.   

The Dr. was impressed.  

If you ask Thomas, he is not sure if the results were worth the pain at this point.   He had asymmetrical pectus.  This means that one side of his rib cage was more sunken that the other.  So when you put bars in to help expand the rib cage.   You push out the unevenness.   The bars cannot be made asymmetrical too.   That would be to difficult for the surgeon to place safely.  (IF I am understanding this correctly.)

So...he does still have some sunken places in his chest.   Dr. Garcia says that some of that could change since he is young.  His bones are more flexible, and he has more growing to do.

Thomas also hunches over some.  This is typical of pectus itself.   But now with the surgery, he has to learn to use better posture.   Unfortunately, we cannot work on that until his restrictions are lifted at 3 months.  Then there will be stretches and other things to help.

Overall, I am pleased.   I know his major organs have more room to do what they are supposed to do.   If the  now mild dents never go away, that's okay.   No one is perfect.  But the fact that he will be able to breath and his heart will have room to beat normally-- That makes it worth it!

June 1 - Pectus Surgery Day 8

I am sorry I didn't update last night. We were beat. 

He did so well through the car ride. I did give him some extra as needed medicine like the pain management team told us to. He was able to sleep some in the car too.

I was so glad his vomiting did not set back our travel plans. I think he feels better just being home. His bed is more comfortable. He has better distractions-- including aggravating his sister. Oh... and we have cats.

Now the plan is to finish weaning off the heavy meds...He is consistently rating his pain between a 1 and 3 which is amazing. Honestly, He is amazing.

So is our God. Really, I have prayed and prayed about this. You all have prayed and prayed for this. I am so thankful....so very thankful. I am sure there will still be hard days. I am sure he will over do it and hurt. But he has done so well. I can't thank you all enough! I can't thank the Lord enough.

I keep thinking of Psalm 126 -

1 When the Lord restored the fortunes of Zion,

we were like those who dreamed.

2 Our mouths were filled with laughter,

our tongues with songs of joy.

Then it was said among the nations,

“The Lord has done great things for them.”

3 The Lord has done great things for us,

and we are filled with joy.

4 Restore our fortunes, Lord,

like streams in the Negev.

5 Those who sow with tears

will reap with songs of joy.

6 Those who go out weeping,

carrying seed to sow,

will return with songs of joy,

carrying sheaves with them.

Specifically verses 2-3. The Lord has done great things for us. I keep saying that over and over in my mind. Lord, you have done such great things for us. And then verse six, I have cried so many tears. He has cried. But seeds need water to grow...and those tears are starting to produce joy.

Praises - 

We are home without complications. 

He is starting to feel like he can breathe better - He says he can feel the bottom of his lungs. 

He is mostly comfortable.

Prayers - 

Continued recovery.

Weaning meds goes well.

May 31 - Pectus Surgery Day 7

Morning Update

Things that hurt after pectus surgery:

Coughing

Laughing

Vomiting

Thomas woke up with a Migraine this morning. As soon as I gave him the ibuprofen he gagged and threw up a little. This is the first bit of nauseousness we have had. He is back in bed now trying to sleep off the headache. This could set our leaving time back a little... But we need him better before we drive home.

Evening Update

Home.. He did good!

Until he decided to pet the cat.....

He had to scoot all the way to the stairs to get up.  

May 30 - Pectus Surgery Day 6

Today has been a good day. Pain level has been about the same today. We had our Pain Management appointment today. It went really well. He is right on track pain wise and weaning off the heavy meds.

We leave tomorrow to head home. I can't wait! But I know it is going to be difficult for him. Car rides hurt. He cannot use his arms to brace himself from the movement of the car. And on the flip side, the movement of the car hurts. We have mostly done in town driving. I am hoping the interstate driving is easier on him. The pain management team did give us some ideas on ways to use his medication to hopefully help.

I have noticed today that he seems to be crooked. One of his shoulders is significantly lower than the other. I emailed the Dr.'s office the images and they replied right away. This is because his back and his chest is fighting against each other right now while he is healing. They say they see this a lot and it should straighten back up as he heals. They also recommended I give him the muscle relaxer more often to help loosen him up.

He is also having a difficult time sleeping. He is a side sleeper and he can't sleep that way anymore. So he wakes up wanting to move and he can't. The good news is the pain is not what is waking him up.

I really am amazed at how well he has done.

Prayer requests - 

That his back and shoulders straighten out

That the car ride is manageable and doesn't set his pain management back.

Random Pectus Thoughts

So... Pectus surgery fact....Thomas can't lift, pull or push more than 5 pounds for the next 12 weeks. So right now... He can't open our hotel door. Things you don't think about.

----------

Me: How you feeling Thomas?

Thomas: One and a half

Me: We should probably go for a walk?

Thomas: Make it a 3...or 9

May 29th - Pectus Surgery Day 5

Today he has done amazing! Since the surgery he has spent a lot of time sleeping. I think this is partly because of the drugs, but also because when you sleep you don't feel pain. He has not slept at all today. He has laid in bed, but he has been alert and awake We only needed 2 oxy tablets today. Pain has stayed at a 2 to 5.

We moved from the Ronald McDonald House to a Hotel in Kentucky. That sounds far away but it is only 15 minutes from the hospital. We also ventured to Walmart to pick up a few supplies, and ate dinner out. He has done a lot and handled it well.

We spend a ton of time just sitting in our hotel. He needs to move and get around, but he also needs to be able to rest. We brought some games with us because you need something today. We went down to the hotel eating area to play Uno. I think this one thing was the most painful thing for him today. You know family games comes with either laughter or anger. Well, it HURTS for him to laugh,and today with Uno comes laughter.

Coughing is the other thing that really hurts him. Fortunately, he doesn't have to cough too often.

We do still have to help him up, and help him lift things, or reach the floor. Put on socks....These are things that he will figure out a way to help himself over time. Right now he is just too injured.

The car is still difficult. We have been trying to drive more because we have a long way to go home. Today's drives did seem better but still painful.

I am wondering if all the activity today will make for a bad day tomorrow.

Prayer Requests

He stays comfortable.

That car rides get easier.

May 28th - Pectus Surgery Day 4

Overnight was kinda rough again. Before the surgery I talked with other people about what they felt helped them be the most comfortable. These things were mentioned: Wedge pillow, Zero Gravity Chair, lift recliner, recliner, lots of pillows, and hospital bed. Before we left I purchased a wedge pillow and a Zero Gravity Camping chair. I figured they would be portable and easy to take to the hotel after the surgery. We tried both of these last night and neither were comfortable. The best option was 4 pillows stacked in a wedge position. We didn't figure this out until 5 this morning, so from 3 to 4, it was bad. Not 9 pain level bad, but bad. After we figured this out, he slept until 9 that morning. And has been comfortable ever since. Thank you, Jesus. This really was an answer to prayer! I was close to losing it last night when I didn't know how to make him comfortable. I knew if I lost it, he would too and anxiety and fear makes the pain worse. I spent that hour in intense silent prayer, and He answered.

Now, He seems the most comfortable when he is lying on the pillows. He says when he is up, sitting, standing or walking his incisions hurt. But also, he is using his abs for everything. Try doing everything without your arms. Your abs are constantly engaged. I think some of the pain is just him building muscle because of this. 

He really has had a good day today. Pain is manageable. We started stretching out his oxycodone and it hasn't seemed to phase him.

We were able to get into the Ronald McDonald House for 4 nights. Two of those nights were spent while he was in the hospital which really worked well. The House is right next door. In fact, it was a shorter walk to the House from Thomas's room than it was to the cafeteria. (Cincinnati Children's is HUGE.) The house had lunch and dinner for us every day! I cannot tell you how big of a help this was. If I didn't feel like I could leave Thomas, Tim could get it to go and bring it to the room for me. The meals are provided by volunteers -- organizations, business, and church groups. They volunteer their time, and work with the House's chef to make the food. Then they serve the food. Words cannot express what a help this is. There are people here with children in much worse conditions than mine. Cancer, heart issues, who knows, They will be here much longer than I am. I can't imagine the stress and strain these people are living in. I know how much I appreciate the few days we have had here. How much more of a service they are doing for those long term patients. Tomorrow, we move to a hotel for 2 more nights. So we will have another room and bed to find a new comfortable. I am hoping the same strategies work. But who knows.

We took a test drive today, and he says that is the worst. You don't realize how much core strength you use in the car. We have a pain management appointment on Thursday. I am going to ask them about any strategies for the car. We have a 6 hour drive home. We should be able to take it slowly, but still. I don't want a set back to the pain. Tomorrow when we drive to the new hotel, I am going to try reclining his seat some.

I can't tell you how much I have appreciated your prayers and your concern. Really all of us have! This has been a long journey, and we have much longer to go. The recovery is 12 weeks long, but the bars will need to stay in for 3-5 years. It isn't easy.

Here are our specific prayer requests - 

That his pain continues to be manageable.

That weaning off the oxycodone goes well. 

That we can find the same comfort level at the new hotel.

That we find strategies to help with the car rides.

May 27th - Pectus Surgery Day 3

He did really well today, and they discharged us. I have mixed feelings about that. So does he. His pain has been under control all day. He has been active, and inactive which is exactly what you want.

 But now that we are "home" things are a tad more difficult. "Home" for now is the Ronald McDonald House here in Cincinnati. We will be here for two nights, then we move to a new "home". I think this may be some of the worse. Not worse than the 9 pain, but not as easy as the hospital. At the hospital we had a "normal". The recovery for this is not easy. You can't use your arms in any way to help you lift yourself, position yourself in bed, get out of a chair, go up an down stair or push or pull. Your arms are basically not there. While in the hospital we practiced all this, but on their bed, their chair, their stuff. Now that we moved, the bed is softer and more difficult to move in using the accepted ways. Our normal has been messed up and we have to find a new one. Today has been soooo much better than yesterday, but still has its own challenges to face.

Another issue is fear. He is afraid of the pain he felt yesterday. Who wouldn't be? That means any change in pain and a bit of anxiety sets in. Which makes the pain worse. This goes with leaving the hospital. Its like a security blanket is gone. And he is afraid.

Specifics to pray for - 

That we find a new normal. 

That his pain continues to be in check.

That his ab muscles adjust quickly. 

That every day is better.

As a side note.....I am kind of afraid I am going to OD my kid by accident. No really there are only two we can't have at the same time. And another two are as needed.

May 26th - Pectus Surgery Day 2

Sunday Night update -- Today has been hard. Really hard. He was transitioning from epidural to IV meds to oral meds. They removed the epidural about 6:00 AM. By 7:30, he was in immense pain. They would come in and give him some very strong IV medications which would help, but not last long. There was a point where he was calling his pain a nine, he had taken everything he could. That was scary. They keep telling me today is the worst day. Mainly because of the switch. The body has to get used to the pain meds from the IV and not from the epidural. 

Tonight, they are working on switching him to oral. This transition has not been as bad. He just had some Oxycodone, and before that he was rating his pain at a 6. He prefers it a 4. I can tell he is better by how he is acting. They say tomorrow will be better. I am praying it is.

His insides X-ray -

May 25th Pectus Surgery - Day 1

Saturday update.... He is doing great. Slept most of the night which means his pain is controlled. He still has his epidural which is really helping. He was up out of bed for a bit this morning but that exhausted him. He is napping now.

Saturday night update....he has been up and moving some more which is great for him, but comes with added pain. He seems to immediately go to sleep afterwards which is fine. Tomorrow morning at 6am the epidural is turned off. Prayers for pain would be appreciated.

Pectus Surgery - Day 0

Today is the day. Surgery is at noon ET.

While we were waiting to go to the OR.

We were allowed to go as far as the door to the Operating Room with him  This was nice...and yet a tad stressful.   Since it was a sterile environment back there, we had to dress up too!

They took him back right around 12:30 ET.

Surgery started at 1:22 ET.

He was in recovery by about 3:00 ET.

Dr. Garcia came and talked to us soon after he went to recovery.   The surgery went well!  They placed 3 bars.   He said that 3 is the most he ever places.   Most kids get 2.

By 3:30 we were in the recovery room with Thomas.  He was very sleepy.   He would wake up for seconds.   When he was awake he said his chest hurt which is understandable. 

We were put in a room around 4:30.

He really spent a lot of time that night of Day 0 sleeping.   

He was not talking much because it hurt. He kept saying his chest hurt, but that was to be expected. We were told his pain is more from the chest muscles being in a different position than the bars they put in because he is still has his epidural.

Feeling Lost

The middle child is having a major surgery on May 24th.   We are now less than a week away. 

It's getting real.   We have been planning this for months....really months. For the most part, I am okay.   For the most part, I look okay.   But honestly it has been hard.

1. We are traveling out of state for the surgery.   Doctors in our area do not do this procedure.  
2. It is a serious surgery.   The hospital is a teaching hospital and has been in contact with us about research studies that they would like us to participate in.   You know it is bad when they start the study information stating that this surgery and Spinal fusion are the most painful surgeries they perform at the hospital. 
3. The recovery is difficult.  There will be 12 weeks were he will not be able to lift his elbows over shoulder height, twist or bend at the torso, use his arms to get out of bed or pull in any fashion, lift over 5 lbs.  He will need help - lots of help. 
4. Did I mention it was painful?  It is hard to watch your kids in pain. 
5. Did I mention it was out of state - 6 hours away.  The logistics of traveling for this are overwhelming at times. 

There are times I say to myself.  I am not doing well. Those are the exact words that go through my head. I am stressed.  I am not doing well. 

Now, it is not all the time.   Just at times.  

So yesterday, I was driving home from the store and Defender by Francesca Battistelli came on the radio.   I have heard this song many times.   But yesterday these lyrics jumped out at me:

When I thought I lost me

You knew where I left me

You reintroduced me to your love

You picked up all my pieces

Put me back together

You are the defender of my heart

I feel lost.  Lost in the worry and the stress and the unknown.  Lost in the preparation and the logistics. Just overwhelmed and lost....

But when I am lost...HE knows where I am.  He knows exactly where I am.