Temporary and Subject to Change!

Two Weeks Post T & A Surgery:

JJ's surgery was two weeks ago today. Most kids would be up and running around again by week two, as their parents start to reduce their pain meds and life returns to normal once again. 

We will get there. We are just not quite there yet. I just called our son's ENT to request more pain meds because we almost out. And, he needs them. (Mommy Side Note: it has been over a week now since he went the ER and was later on admitted and no one has called to follow-up on how he is doing. Grrr!)

Anyways.........

JJ had his first physical therapy evaluation two days ago. Our therapist is so great...she really is. Right now, she is double booked with patients, but when I told her what happened she worked things out to squeeze JJ in. We have known her for almost six years now and she has been a huge help to all three of my kids. My kids trust her and enjoy their sessions with her, even when they are in pain. We are blessed to have her taking care of our kids.

When she took a look at JJ's neck, she looked up and me and quietly whispered, "Dana, what did they do to him?!" My thoughts exactly (*big sigh*). The good news is his chin is no longer on his chest. So, there has been some progress. But, here is what he needs help with:

• He can only turn his head side-to-side about 40 degrees.
• If you ask him to look up at the ceiling, he can only look up 10 degrees before crying or yelling from the pain. He also hunches his shoulders to be able to support his head when he looks up.
• He is compensating now for the pain when he walks or does normal activities - he will turn his entire body so he does not have to turn from side to side; he holds his head downward and is very stiff when he runs.
• When he tries to lay down in bed, he has to get on his side and lower his body down to his pillow and THEN roll over. 
• When he tries to get up from laying down, we have learned to let him do it on his own and not try to help him because when we do we unintentionally hurt him. He has to roll back over to his side and use his arms to push slowly himself up to a sitting position.
• We can not limit his pain meds at this time. He is taking something just about every 2-3 hours and during the night. However, part of the problem with that is they make him feel comfortable and he overdoes it. When they wear off, he is worse than before. The PT would like to see us start to wean him off of Ibuprofen starting next week. But, right now, I just don't know how that is possible. Nor do I feel that returning to school next week would be a good idea at this time. His therapist agreed.

In the meantime, he will be going to PT every Monday. And then, we'll come home (squeeze a nap in for my youngest) and head back to PT for Mia. He has to wear the neck brace throughout the day, as much as he can tolerate it. She wants him to keep it on in the evenings, when the pain is the worst.

Our Homework:

She wants me doing at-home PT with him twice a day (morning and night) and went over gentle massage techniques for his spine, neck and back of his head and ways to gradually get him to be able to look up again. She started to introduce some yoga positions with him, but when she saw they way his was holding his neck/head, she decided that would only do more damage at this point and he was not ready for that yet.

This will take time. I have to remind myself of this daily. As a parent, the words, "Not fair!!!" scream in my head all day long. And, I pray for extra patience and extra strength, for both of us, as I give extra hugs and extra kisses. 

Day-by-day he will get stronger and "this, too, shall pass." Temporary and subject to change!

Thank you to all of our friends and family who have passed along encouraging words and agreed with us for complete restoration to our son's body. Thank you for the "get well" cards and sweet notes - they brighten his day! 

"He heals the brokenhearted and binds up their wounds [curing their pains and their sorrows]." 

Psalm 147:3 (AMP)

Tonsillectomy Gone Bad

My daughter had a tonsillectomy and adenoidectomy last July. Minus the extreme, rare tongue pain she had afterwards and the fact that she got strep throat on top of her recovery, things went well. It was a normal T & A.

So, we used the same doctor. We liked him a lot. All things considered, we still like him....

Despite the fact that our son ended up like THIS after his surgery...in a NECK BRACE:

A mother couldn't be more mad than I am.

Seriously. A child goes through enough pain after having their tonsils and adenoids removed. I have had TWO kids who've had their tonsils out and I will be the first to tell you it is challenging for all parties involved - for the parents and the child. And, we put our total trust in the doctors who operated on them. Because we have to. But, to be injured during surgery is just unbelievable. UNBELIEVABLE!!!!

Have I mentioned how mad I am?

He is only four-years-old. FOUR. And, in a lot of pain....more than we anticipated.

It is not fair to him at all. We are on week two and he should be feeling better by now, but has this horrible neck pain where he wakes up screaming every morning. The pain is immediately and horrible. And, we can't get pain meds into him and get the rice sock heated up and on his neck fast enough to ease his pain.

Immediately after he came out of surgery we knew something was wrong. The nurse came into the hall and said to me, "Mrs. D, he is crying for you. You need to come now."

I had to climb into bed with him to get him to calm down.

Even then, it did not help. His neck/head hurt bad. He was not crying from the pain of having his tonsils removed. He was screaming from the pain in his neck and the back of his head. 

I paged the doctor several times after the surgery and he was confident that the pain JJ was having was from having his adenoids scraped. And, from nothing else. He told me our son was confused about his pain.

But, moms know when doctors are wrong. They know!

Fast forward to day six of neck and head pain....

He woke up several times during the night just beside himself...begging for us to take him to the emergency room. There was nothing we could do to make it better but to pray.

We made it to the morning and I paged the doctor-on-call who told us to bring him to the ER where his team would meet our son and my husband there (I was due to take my daughter to her dance recital that day and could not come).

My husband took JJ to the emergency room that day. They did x-rays and CT Scan on JJ's neck and head. At first they thought the pain he was having was because his bones had been misaligned during surgery. But, what had really happened was they were way too rough with him and caused muscle inflammation to the back of his neck. They admitted him, two minutes before I walked out the door to take our daughter to dress rehearsal for her spring recital. I got the text from my husband and was crushed. I had to put on a "happy face" and be there for our daughter as she danced her heart out on stage, but my the other half of my heart was with my son as he laid there in agony in the hospital.

Big Sister encouraging and praying for Little Brother who's in the hospital

But, when everything came back "clear," and there was no damage done to his spine and for us to see the rheumatologist, my husband told the doctors he was taking our son home so he could sleep and he'd bring him back in the morning. So, they gave him pain meds in his IV and sent him home. The ENT brought JJ's rheumatologist up to speed on everything and told her he'd be in to see her in the morning.

So, basically, everything was passed off to his rheumatologist (because ENTs don't deal with inflammation). The next day, we all made a trip back to the hospital to see his rheum. She told us, "I am so very sorry this happened to your son. This injury to his neck can take up to at least a month to heal."

End result: he starts physical therapy tomorrow for his neck and back of his head. And, has to wear a neck brace throughout the day to get him to lift his head up instead of walking around with his chin to his chest.

Luckily, we have a good therapist who we have been with since Mia was 22 months old. Unfortunately, we have three kids in physical therapy right now. And, that is three kids too many.

This should not have happened to our son. It sucks. Big time. But, there is nothing we can do about it. We have to pray and encourage him (daily) and hope there is no long-term damage to his neck.

What should have been a simple procedure had turned into a prolonged recovery. And, it is not fair to a four-year-old boy who already has had so much to deal with.

We ask that you stand with us and pray for a complete recovery for our son. He needs your prayers. Thank you.

Eating Healthy For Happy Bodies!

GF/DF Living!
We are approaching the end of our third week of healthy eating. All three kids have been eating gluten-free and dairy-free diet and I am very happy to report we are seeing results! After an entire year of tummy pain during and after meals, vomiting during or after meals and chronic diarrhea, JJ's stomach is FINALLY back to normal. The best part is he can tell a difference, too.

While eating his GF DF hot dog (bun included) for lunch the other day, JJ said to me, "Mom, my tummy does not hurt anymore because I am eating healthy to make my body happy!" This is truly a miracle. JJ has had a challenging year - filled with numerous tummy tests (colonoscopy, endoscopy and upper GI series) and appointments with the gastrointestinal doctor and the rheumatologist. Mealtime was always a challenge - he'd either not eat at all or would get sick immediately afterwards. Most of the time, he was requesting a warm rice sock after meals for his tummy and would not be able to get up off the couch. On really bad days, we would find him crying on the floor after he ate because the pain was just too much.

Now, he enjoys eating and is actually hungry! Such a wonderful change from the boy who was not putting on weight and was always lethargic and pale. It's such a horrible thing to see your child suffer because of food. And now, he does not want anything that has gluten or dairy in it because he can tell the difference in in his own body. We have our happy, healthy boy back! And, once he gets his tonsils and adenoids out (schedule for next Friday, May 11), he will really be able to eat!

We are slowly seeing results with Mia's joints, too. While her right knee will require a fourth drain and injection (scheduled for tomorrow), her physical therapist was very happy to report that her knee is smaller this week than last week (it was 2.5 cm bigger than the left knee and now it has gone down 0.5 cm):

Yes, there is obvious swelling, but there is no stiffness and she is completely mobile - her rheumatologist has noticed this, too. I know it may look big in this picture, but it is definitely smaller than what it was.

She also told us the fluid and swelling around her right collarbone joint is less than it was last week. Such great news! Of course, her all-too-fascinated doctors would like to schedule an MRI of her collarbone in the next few weeks, but we are believing it will go down before then. This rainy weather has definitely had an affect on both of our kids' joints.

Speaking of weather and seasons, Mia's physical therapist pointed out something interesting to me last week: Mia never flares in the summer, winter or fall; only in the spring (specifically the months of March/April). Interesting. And as I look back, I realize she is right.

• Mia's first flare occurred in March when she was 15 months old. 
• Her next big flare, which resulted in her needing to have her left knee and her right elbow drained and injected, happened in April (Easter morning) when she was three-years-old. 
• She flared again in March 2012 and had to have her left knee drained again (age six). 
• Which brings us to today - her right knee flared in April and she will being having her fourth drain and injection. (Interesting side note: the PT even told us the last time she saw Mia was April 18, 2011 and we went back to her April 18, 2012 because she was flaring again). 

Sorry, but I find this "seasonal connection" with her flares all too interesting. Yes, we've been told arthritis is not seasonal by her doctors and I know many would disagree with my theory, but come on! There has to be something said for the fact that our daughter only flares in the spring.

And, just like before when we increased her omega-3 intake, we are seeing results in her joints. JJ's, too. Both kids take 1 tsp of lemon-flavored cod liver oil every morning - with no fuss, I might add. Their pain is reduced and their immune systems boosted. We have also added 2oz of pomegranate juice to their morning routines. Mia is still taking Indocin (4.5 mls, 2x a day), but JJ is off all NSAIDs. Thank you, God!

So, despite the way things may look on the outside, we are seeing huge changes in our children's health. And, it is only going to get better!

"Everything you ask for in prayer will be yours, if you only have faith." Mark 11:24