6 Months Post-op

Lauren is doing fantastic!

We went Friday for her 6-month check-up, and Dr. Berch said everything looks great. He released her to do anything she wants to do...even play football if she wanted to...LOL. Nothing but ballet is on her agenda, though - she's looking forward to starting back next week.



She still has some discomfort every now and then on her sides where the bar is attached, but it's nothing she can't live with for a couple of years until she has it removed. He said we would discuss at 2 years post-op when to have it removed. She will be 12 1/2 then, and he said we may even stretch it to 13 years if it looks like she still has some growing to do. As it stands now, she'll get it removed in February 2013.

I'll update if she has any changes. Otherwise, we'll let you know how the removal goes in a couple of years!

Lauren's Pectus Excavatum Before & After Nuss Procedure

Before

After

3 Weeks Post-Op

It's been 3 weeks since surgery, and Lauren is doing GREAT! We have been simply amazed at how well she has done. She is down to only taking Advil at night (she is only comfortable sleeping on her back, so she gets stiff and sore from being in the same position all night). She takes no pain meds during the day! Can you believe that? She is able to get around by herself, dress herself, shower, and even do some light chores around the house (for this I am VERY grateful). Yesterday, she even held Aaron on her hip...all 19 lbs. of him! The only thing she still has trouble with is stretching her arms completely above her head and getting in and out of the bed. I usually go in at least once during the night to help her sit up for a minute to help stop some of the stiffness/soreness. This morning she sneezed (I don't think she's sneezed even once since surgery), and that hurt bad enough that it made her cry.

Two days ago, we went to see Dr. Berch for her first follow-up visit. He took an x-ray, and we got to see it. It's a little crazy seeing that huge bar inside her...I mean, we know it's there, but seeing it was a little surreal. He was also amazed that she was able to come off the Lortab as quickly as she was and that she is getting around as easily as she is. We, of course, know that it is only because of our merciful Lord that it has been like this. Dr. Berch said he plans to release her for normal activity (no contact sports, which she doesn't do anyway) the middle of May, which would be 3 months post-op. Of course, we asked about ballet, and his first response was "in May"...but then he came back and said as long as she doesn't have a risk of falling or colliding with someone she could resume some ballet classes in another couple of weeks if she feels up to it. She will just need to be careful at first and not do jumps or too many turns. He encouraged her to keep working on getting her arms up above her head, and I think the stretching she does in ballet will help that a lot.

Thanks again for all of your prayers and words of encouragement. It's really busy around our house, so I probably won't update the blog until her 3 month doctor visit the middle of May.

While in Jackson for her doctor visit, we took the opportunity to go to the Mississippi Children's Museum. Although she was a little upset that she couldn't climb in all the tunnels and do all the things she wanted to do, they all had a great time...here are a few pics:

1 Week Post-Op

What a roller coaster ride the past week has been, but I can say that we have definitely made it over the mountain top.

Our first night home was feeling pretty great for a while. Unfortunately, momma didn't think about the fact that no nurse would be coming in to wake us every hour. I had no idea we would sleep so sound. I was suddenly woken by Lauren in terrible pain. After jumping off the couch (she's sleeping in the recliner), I realized it had been 7 hours since her last dose of Lortab...7 hours! Of course I ran to the kitchen to get her some relief, but it took about 30 minutes for her to feel the relief. I felt TERRIBLE. After that, I decided I would set my phone to wake me on the 4 hour mark...that worked MUCH better.

The second day home she had some pain but nothing like in the hospital (or the night before). She was still taking Lortab every 4 hours, and that was keeping her out of too much discomfort. She did, however, continue to cough and also started having occasional shooting pains under her right arm and sometimes under her left breast. I'm thinking it could have been muscle spasms. This continued through the second night, and by the 3rd morning she was having them more regularly.

Suddenly, about mid morning the 3rd day, she became the old Lauren...chatty, couldn't stay still, no longer needed my assistance with things like getting up out of the chair or going to the bathroom. All day she was totally different. She had some of her best friends come to visit, and that made her feel even better. We sat at the table and played board games, she sat at her computer, we went for a walk outside, it was like she had turned 180 degrees from where she had been just 24 hours earlier.

She took a shower and finally got a really good look at herself in the mirror. She's so pleased with what her chest looks like and how it feels. She made the comment that when she holds something up to her chest now (like a pillow, stuffed animal, book), she can feel it touching her chest...instead of nothing because of the funnel chest. She also noticed in the shower that her Nuss bar is protruding a little on her sides. You can actually feel it through her skin. She said it doesn't bother her, and I'm sure she won't even notice it there in a few weeks. Dr. Berch had told us it would be like that...he actually gave her some "growing room" when he put it in, so it should become less visible over the next 2-3 years.

It's our 3rd night, midnight, and she is sleeping soundly...still in the recliner...not sure how long it will be before she can sleep in the bed. She did have a few shooting pains along with some coughing right before bedtime, but it was nothing like yesterday...or even this morning, for that matter. I can see that she is well on her way to complete recovery.

Oh, yeah, this afternoon we started going 5-6 hours between Lortab doses with 2 ibuprofen between doses. Hopefully she won't be on the Lortab many more days.

Day 6: We're Home!

Lauren woke up feeling good this morning, so we decided to get a shower. It felt really good to her, but it was exhausting. After it was over she started hurting, throwing up, and coughing. After taking some Lortab, she slept for about 3 hours. When she woke up around noon, she said,"I'm ready to go home." So, that's what we did. She was discharged, and we got home about 4:00 p.m.

Since we've been home, she has been like a different child. She has been hanging out in her room with her sister and until now has had very little pain.

Thanks again for all the prayers, phone calls, comments, and visits. It would have been much harder to make it through this without all of you.

Here's what her sweet Nana had made for her arrival:

5th Night: Probably the Last

Last evening (from around 7:00 pm until 11:00 pm) was probably the most traumatic we've had. She started having a terrible cough (just from being sedentary), and I'm sure you can only imagine what that would feel like with her chest. It was painful but also terrifying for her. She would cough but not hard enough to cough anything up, then she would strangle and not be able to breathe because of the mucous she had just barely coughed up. She would cry out, "Jesus, help me! I trust you, Lord! You are my healer." It was heart-breaking to me, but she was definitely crying out to the One to help her. It blessed my heart to know she immediately called on His name.

Finally, it was time for another dose of Lortab. We hadn't had any morphine since around noon yesterday, and although it was offered we both knew that's not what she needed. She conquered the cough (with the help of the Lord and by hugging the owl pillow Dawn made for her), and she rested the remainder of the night.

We are shooting for going home this afternoon, so please pray for a good morning for her.

Day 5: AirCare

Thanks to our favorite retired helicopter pilot, Uncle Jerry Meador, Lauren had some very special visitors today from the UMMC's AirCare. They brought her a helicopter stress toy and a journal with the Batson logo on it. They also invited her up to the helipad to take a picture when she feels like it. In the meantime, they took time to visit with her and pose for a picture:



- Posted using BlogPress from my iPod

Day 5:...continued

We woke her at 11:am to take her Lortab...of course, she resisted at first...it's liquid, and she hates the taste. I have to constantly remind her, "it's either bad taste or pain." After she got good and awake, she decided she wanted to go down to the activity room. When she stood up, however, she decided she shouldn't walk...just ride in the wheelchair to the activity room. She said it felt so good to get out of this room.

The activity room is great...toys, games, video games, crafts, etc. She decided she wanted to play Sorry! We played with one of the volunteers, and Lauren was winning, until her chest started hurting...we headed back to the room.

Once again, it was a huge ordeal to get her back into the bed. It's the whole sitting on the side of the bed and 2 of us turning her to get her back into the bed, then pulling her up to the right position with the under-sheet/pad thingy. It is always very painful for her, and she almost always resists because of fear. We have to talk her down to taking deep breaths just so we can move her...then, when we do move her, she screams with pain. I will be so glad when we are home and she can get in the recliner to rest...no more turning...just sit and lean back. I think it will be SO much easier on her, and she won't dread getting up & down.

It's now 12:30, and we can't have more Lortab until 3:00. She was hurting too badly to make it 2 1/2 hours (if we're close to time, she's been just breathing through the pain while I massage her legs to take her mind off it), so she just took another 1/2 dose of morphine and she's already sleeping peacefully.

Oh, yeah, Dr. Blewett said it could be muscle spasms in her chest wall causing some of the suddenly sharp pains she's having, and he prescribed a muscle relaxer as needed. We haven't taken that yet, but it's good to know we have it if we need it. He also said it looks like she could very well go home tomorrow. If we can manage to keep her away from the morphine for several hours, we can leave...so, please continue to pray for her pain to subside.

Also, we are losing our precious nurse, Mrs. Cindy Morton, this afternoon...she's been our day nurse every day since the beginning. She has been so wonderful to Lauren. Lauren said she wants to kidnap her and take her home with us. Mrs. Cindy said we are getting a great replacement...hard to believe the new one would even halfway compare...we'll see. Here's a pic of Lauren and her favorite nurse:

4th Night & Day 5: 2 Steps Forward, and 1 Step Back

At least it's not the other way around taking 1 forward and 2 back...we ARE making progress, but it's slow progress...and that's ok.

After yesterday, I really thought we would be on our way home today, but it doesn't look like it will be today.

Halfway through the night last night, she had some breakthrough pain where she couldn't wait until the next dose of Lortab (it's every 4 hours)...we had to resort to the morphine again, which is every 2 hours as needed. This morning she took Lortab at 7:00, then by 9:00 (after she had gotten up and taken a waist-down, seated shower) she was at a pain level of 8. I guess the shower was just too much. When she gets up, she says she hates gravity, and it feels like the bar is going to pop out of her chest, which I can certainly understand. At 9:am, after unsuccessfully trying to breathe through the pain, the nurse and I decided to try just a half dose of morphine so she could rest. (There was no way she could wait 2 more hours until she could get more Lortab.) This put her right to sleep. It's 10:40 now (only 20 minutes until she gets the Lortab again), and she's still sleeping.

Hopefully she will wake up feeling better. She really wanted to go to the activity room today, and I know she will be disappointed if she doesn't feel like it.

Day 4: Is that the Hallelujah Chorus I Hear?

Yes it is!!!

Praise be to the Lord, for he has heard my cry for mercy. - Psalm 28:6

Lauren had a great day today. She only had 2 doses of morphine today - the Lortab seems to be doing the trick for the most part. She got her catheter out (that made her feel lots better), and she has gotten out of bed 3 times today...and last time she even walked down the hall quite a ways.

We are so thankful she seems to have gotten over the worst of it. Now we are looking forward to going home tomorrow or Tuesday. We really miss home, and she misses her sister terribly.

She did have quite a few visitors today...here are some pics:






Thanks again for your prayers...we love you all!

- Posted using BlogPress from my iPod

3rd Night = Rough Night, but Good Day in the Forecast

Last night was pretty much terrible for a while. I told my mom that I wanted my momma last night...I would've surely let her take over for a minute so I could just go out in the hall and cry. The whole waiting-for-the-morphine-to-take-the-place-of-the-epidural thing was very painful for Lauren...and painful for me to watch. We never did get the pump, but it was given every 2 hours until finally we got enough in her system that we were able to go a whole 4 hours without a dose. To top it off, in the middle of all the pain, we realized that when we got her up to get the epidural out, her catheter detached from the tube. She also had a blister on her leg from some kind of allergic reaction to the catheter. It was during all the getting her cleaned up and taken care of that she was in her worse pain. Finally, exhausted and out of pain, she slept hard for 4 straight hours. I did have to wake her up several times to get her to breathe better (her O2 sat would drop into the 80s), but she would just go right back to sleep.

Now, she's awake and watching TV...ate a donut and drank some milk. She has her voice back, and she's actually talked to the doctor and nurses some.

Speaking of doctors, Dr. Blewett came in this morning and said we are going to get the catheter out first thing, start her on some oral pain meds (something like Percocet or Lortab) but keep the morphine on order every two hours as needed for pain breakthrough. Once she is no longer needing the morphine she can go home (he said plan on Monday or Tuesday at the latest...YAY!). Since she will no longer have the catheter, she will be forced to get up more which will help tremendously with her healing. We feel good about today and look forward to getting better.

Rejoice in the Lord always; and again I say, rejoice!

Philippians 4:4

Day 3: The Good & The Bad

Today was a great day. She felt so good today from the time she got up. She played on the computer for a while, wrote and drew in one of journals, and enjoyed watching some TV.

Lindsay and Aaron came up with Nana and Papaw to visit, and I think she really enjoyed seeing and hanging out with Lindsay for a while.

Here's a picture of the sweet sisters:

Then, this afternoon she suddenly started feeling bad and hurting all over...she had spiked a fever. After taking Tylenol and getting her fever down, she slept for about 30 or 45 minutes then suddenly woke up with her chest hurting badly. It quickly got worse, and the pain management team was called. They decided it was probably that the epidural was on its last leg, and they gave her 2 doses of morphine. After the 3rd dose of morphine (they were having to play catch-up on the pain management), her pain subsided enough that they could sit her up to take out the epidural. This pain went on for a couple of hours, but she is resting now. They have a morphine pump ordered which will give her continuous flow as well as a button for her to press if she needs more. The nurses as well as the anesthesiologist think getting the epidural out and putting her on morphine will probably help her to be able to get out of bed easier. Unfortunately, she will be a bit groggy because of the morphine.


Thank you for your continued prayers for Lauren’s recovery.

"Be strong. Take courage. Don't be intimidated.

Don't give them a second thought because God, your God, is striding ahead of you.

He's right there with you. He won't let you down; he won't leave you."

Deuteronomy 31:6

(The Message)

Plan for Day 3

Dr. Berch's associate, Dr. Blewett, just came by and said she looks great on paper, took the dressings off her incisions, and said that looks good, too. He wants her to get up 2 or 3 times today, and he said we will start replacing the epidural with some oral narcotics tomorrow because you only get about 3 good days out of an epidural before it stops being effective.

I can't say enough about the staff here at Blair E. Batson Children's Hospital. Maybe it's because this is our only experience with a children's hospital, but these folks have all been wonderful...even the student we had yesterday was as sweet as he could be but was a nervous wreck (I was reminded that it is probably a terrible feeling having to perform in front of your instructor and the patient's family when you're so green). I really should've given him some slack in my earlier post. Sorry, Chris (not that he even knows this blog exists...but my confession makes ME feel better...LOL). Anyway, we would highly recommend this hospital to anyone with children...it is top-notch in every way.

Here are a few of pics from the hospital if you've never seen it:

2nd Night = Great Night!

Right at 9:00 last night she woke up from a deep sleep with quite a bit of pain. Thankfully, 9:00 was time for her Toradol, so the nurse got it in her quickly. She was resting again by 9:30 or so then asleep by 10:30...then slept until 4:45! The only time she would even slightly wake up was when I would wake her up to take deeper breaths when the alarm would go off for her respiratory rate dropping too low.

It's almost 6:am, she's had some Sprite and a chocolate chip cookie (thanks Kelly, Ryan, and girls!), and her pain level is about 2...looks like she's dozing back off to sleep.

Thank you all so much for your thoughts, prayers, and sweet comments - she enjoys it when I read them to her.

Praise to Jehovah Rapha!

He heals!

Day 2: And....she's up!

Just slowly got up and took a walk to the bathroom...then back to sit in the chair. Of course, it wasn't the easiest thing in the world. It was uncomfortable, but I think she is enjoying being somewhere besides in that bed. She's a trooper!

Bless her heart, this was such a forced smile. I told her she didn't have to, but she insisted.

After picture

I know some of you are anxious to see the results, but we still have some monitors in place. This is the best I can do for now...hope you can tell something about it.




- Posted using BlogPress from my iPod

Day 2: Birdhouses & Bracelets

It is amazing how quickly things can turn. She said she felt so much better she wanted me to lift the head of her bed, wanted the tv on, ate about 1/4 of a biscuit, and wanted me to brush her teeth. Thank you, Lord, for getting us over that hump! She says her pain is about a 2 and sometimes a 3. God is so good!

The activities director came by and offered to bring her some things to do since she can't go to the activity room. She chose bracelet making and birdhouse painting. Amazing!









Here's the finished product:

Plan for day 2

Just saw one of the pediatric surgery residents, Dr. Underwood. He said they plan to get her up today (yes, even with her epidural...it is only in her chest).


Dr. Berch came by and ordered Toradol and has a call in to anesthesia to see if we can up the epidural again. The Toradol seems to be helping some, though. He said we won't get her up until we get her pain under control because getting up is going to be painful enough.

I haven't been able to get her to eat anything, but she is drinking water and Sprite.

On a lighter note, we have a great seasoned nurse today but also a student nurse. Everything (vitals, IV, urine bag, etc.) that has to be done is done by the student with the instructor or our nurse watching/coaching. Maybe it's because I have had very little sleep, but he is getting on my last nerve. I'm wondering how he is graded during clinical...poor guy...he can't be doing well.

Here's my sweet girl:

First night

It is 4:am.

Between 10 & 10:30 last night she started hurting again. This time she said it was a 6 or 7 on the pain scale (both episodes yesterday were a 9-10 for her). After her pain yesterday afternoon, they had left her epidural on 5 (6 is as high as they can go, but they wanted to keep it lower because being on 6 is what was causing her O2 & BP to drop). So, last night the only place to go to control the pain was back to 6...that's what they did, and it seems to be working.

The nurse and I are having to monitor her O2 and respiratory rate, and wake her every time it drops to make her take deeper breaths so they won't have to drop her epidural back down to 5. So, no much sleeping going on here.

It is 4:40 now, and she just woke up about 4:15 hurting again. She breathed through the pain, and now she is resting. She is such a brave little girl.

Please continue to pray for minimal pain...also that she can increase her breathing exercises to avoid pneumonia. The exercises are pretty painful so she has been resisting filling her lungs.

Here she is as I type:




- Posted using BlogPress from my iPod

Post-Op 6 hours

It's been a roller-coaster ride since surgery...here's what's going on:

To make sure she has as little pain as possible, they turn up the juice on the epidural a lot during the surgery. Early in recovery, she was not breathing well because she was so sedated, so they had to come off the epidural quite a bit to get her to O2 saturation back up (it had dropped below 90%...normal is 95-100%). The result, though, turned into excruciating pain. When I was allowed to go back to see her in recovery, she had just started crying and screaming in pain...of course, I was crying right there with her. She would say, "Mama, it hurts so bad...I can't breathe!" It completely broke my heart, and I immediately sent word to the waiting room to pray.

In the meantime, the anesthesiologist bumped her epidural back up and gave her morphine. It took less than 10 minutes for it to kick in and knock her completely out, but it seemed like an eternity. She continued on for the next few hours, waking (but groggy) occasionally and talking but not in pain. Then, about 4 hours post-op her blood pressure and her O2 sat dropped again, so they had to back off the epidural again. Once again, terrible pain until they could get it increased again, which took about 30 minutes but seemed like a couple of hours.

She has a temp of 101, but the doctor assures us this is not unusual for this big of a surgery...probably just inflammation. He says we shouldn't worry at this point.

So, I started this post about 4:30 p.m., and now it's 6:30. Now, she's doing amazingly well. I think we've found the magic number for the epidural level.

Dr. Berch came in a few minutes ago and said regulating the pain is pretty much trial and error. I don't (and she doesn't) much care for the error part. Those of you who are parents understand, I'm sure.

Dr. Berch also said that Saturday or Sunday we will start out with oral pain medication in the morning then ease her off the epidural and see how she tolerates it. If she doesn't, we will increase the epidural again and try again the next day.

We've started breathing treatments, and her O2 sat is staying around 99. Right now she has her iPod in hand, checking out what's going on on Facebook while eating McDonald's French Fries and drinking Sprite. Wow! We've come a long way, and I know it's only because of the Lord's mercy I am witnessing this.

By the way, her chest is beautiful. She's pretty amazed with it, too...keeps touching it. I'll try to post some after pics as soon as she has all the monitors and stuff detached.

Thanks again for all your prayers and sweet comments. God is good...all the time.

Just sitting here thinking how strange it is going to be seeing her chest for the first time...probably for her too. Here is a before pic we took last night:








- Posted using BlogPress from my iPod

It is 11:30. Everything went well and they are closing her up. I should be able to see her in recovery in about 15 minutes. Thank you, Jesus! And thank you, intercessors.

An hour later and they finally got the epidural in (had a little difficulty), and they've started the surgery.

Here's what was going on in the waiting room while the surgery was going on:



















- Posted using BlogPress from my iPod

They just took her back...waiting for the anisthesiologist to let us know when she is asleep and the epidural is in place.


- Posted using BlogPress from my iPod

Today is the Day

Well, it's here...the day of the surgery. I, for one, haven't gotten much sleep the past few days. My brain has been busy turning the event over and over again in my head...making lists of things to do, things to take, etc. Even as I was up last night, however, the Lord continues to remind me of the same thing:

"Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."
- Philippians 4:6-7

So, that's what we do...because we believe. We know Almighty is so much bigger than anything we have in front of us, and we are thankful He awaits our requests.

Thank you, Father, for the peace that we have because we know your promises are true. Thank you for Lauren, our brave little girl who also trusts you. Again today, just like any other day, we place her in your hands because we trust you. We love you and praise you, Lord, because you are holy, righteous, faithful....and worthy!

The Nuss Procedure

Instead of trying to explain this, I've added the following video by Dr. Andre Hebra explaining the technique. The video is about 10 minutes long, but you can actually see the procedure in the first 2 minutes.



Lauren's doctor, Dr. Berch, explained that what is happening can be compared to if you got braces and the orthodontist tightened the wires so tight that your teeth immediately were straightened. He said the tension the rod is putting on the ribs and sternum is just like that. This is why Lauren will have a thoracic epidural for the first few days. After two or three days, they will start to ease off the epidural and replace the numbness with pain medication. Her length of stay in the hospital will be determined by pain management. So, now you know how to pray. We are expecting the Lord to do a miraculous work in Lauren, in that her discomfort will be minimal and her recovery will be short. Thanks in advance for your prayers!

What is it?

Pectus excavatum, or sunken or funnel chest, is a chest wall deformity where several ribs and the sternum grow abnormally causing a caved-in appearance of the chest wall. It occurs in about 1 in 400 births, and the male-to-female ratio is 3:1.

Although PE is a congenital deformity, we only started noticing Lauren's when she was a toddler. After watching it stay pretty much the same all her life, we started to see a worsening during and after her 9th year when she had a couple of growth spurts. She not only showed a difference in appearance (deeper chest wall, rolling forward of shoulders, and pot-bellied appearance), she was also showing more signs of exercise intolerance (shortness of breath, chest pain/pressure, and feeling faint). This was when we decided it was time to see the pediatrician.

After several tests and finding out that all her symptoms were being caused by her PE, we were referred to Dr. Barry Berch at Blair E. Batson Children's Hospital in Jackson, MS. He will be doing her surgery on February 17th, 2011.

One of the tests to determine the degree of severity of the PE is a CT scan. From the CT, a Haller index is derived by different measurements. An index of more than 3.2 is considered a severe deformity that requires surgery...Lauren's index is 5.0 (Dr. Berch says this is one of the more severe he sees). Below is a similar picture to Lauren's CT (not her actual) which shows the displacement of the heart caused by pectus excavatum. Seeing this, you can definitely understand why she has had discomfort when she exercises.

Here is Lauren being a big girl getting her IV for her CT scan,

and here she is getting the CT scan.