Back in Salt Lake City

Today we made the trek back down to SLC. We drove a similar route, arrived around the same time of day, ate dinner at the same place as the first night of the last trip, and we are staying at the same hotel. So many things are the same, but so much is different. Almost 15 weeks ago I was incredibly nervous, scared, overwhelmed and a little naive regarding what we were about to endure.  Now I have so many mixed emotions about coming back that I am having a hard time wading through them all. In one sense, I have a feeling of security, relief, and a much lighter heart than last time. In another sense, I am still anxious, sad and confused as to why Mason had to go through all that he did.

The one thing that is definitely different is Mason. Physically, he looks like a different kid. Mentally and emotionally, he has endured something most will never go through and has handled it with laughter, smiles, and a tender heart. He has recovered 100%, if not more. He is better than he was before. His developmental skills are that of an 18month old (he’s 13 months) and he is as funny and feisty as they come. He is literally our pride and joy. We are so proud of him!

Mason has a follow-up appointment with the main pediatric cranio-facial plastic surgeon on Tuesday morning at 9:15am. Assuming everything goes well at that appointment we will be back in Bozeman Tuesday night. We will continue to send in pictures to Mason’s surgeon team every 3 months and he will be seen once a year in Salt Lake until he is 5. Please pray Mason’s appointment on Tuesday goes beautifully and that he is right on track for healing.

8 weeks post op

I can hardly believe it has been 8 weeks since Mason’s surgery. Time has gone quickly, but more than that is my amazement at the events that have occurred in just 8 weeks. I look back and wonder how it is even possible that Mason has changed so much. I also look back and I am in awe at the emotional roller coaster we have been on and wonder how we (especially me) survived. Through God’s awesome power we were able to be strong for Mason and for each other.

The first couple of weeks post surgery were pretty rough around here. We got very little sleep, were worried about him all the time and (per Mason’s demands) had to be carrying Mason at most times of the day. However, we were blessed with so much help from our amazing friends and family that we managed to survive. We were blessed with a tremendous amount of prayer, a freshly cleaned house upon arriving home, clean laundry, groceries and many meals to help ease our transition back into ‘normal’ life. Now, 8 weeks later Mason is really doing incredibly well. Both Josh and I feel like he is completely back to his easy going, silly, food gobbling, good sleeper, extraordinary self! It is so wonderful to see. He warms my heart more than I could have ever imagined possible. I thank God every day that I get the opportunity to be Mason’s mom!

Since we have been home we have had a follow up appointment with our pediatrician here and have sent in follow up pictures to the plastic surgeon in SLC. We will go down to SLC for a 3 month post op appointment at the end of May. If everything looks good then we will continue with pictures for the remainder of this year.  After that, we will return to SLC every spring for a yearly check-up until Mason is 5 years old.

For anyone interested here is a link to before and after pictures of Mason … for you “low-tech” people, you need to actually click on the highlighted word “link” earlier in this sentence :).  The first 4 images are “before” and the last 4 images are “after”.  Take note of the sides of his forehead in the front view and the length of his head, front to back, in the side view.

Book Review: Living with Confidence in a Chaotic World

I periodically do book reviews on books from booksneeze.com and post them here.  No, this isn’t an update on Mason – but, he is doing great!  We’ll post an update on him soon.

For the book, “Living with Confidence in a Chaotic World”, Dr. Jeremiah gives us good insight on coping with the chaos of today’s world. He reminds us to stay in the Word, keeping our perspective “eternal things” rather than things of this world that we have no control over. We may try to make sense of what is going on and only the Bible has the answers to keep confident as Dr. Jeremiah shows us. I read this book really fast and didn’t put quite as much time into it as I should have, but nonetheless, it was worth it … 3 out of 5.

Coming home with a “newborn”

(from Holly)  Gotchu! No, we are not having a baby. However, taking care of Mason recently sure feels like having a newborn. Both Josh and I are exhausted, our caffeine intake has skyrocketed and we long for a solid nights sleep. We have reverted back to be over cautious with our child, like when he was a newborn and we had no idea what to do with him 🙂 … sleeping with him and getting up every three hours during the night (this time to administer medication instead of feeding).

We had Mason’s follow up appointment this morning and have been released to come back to Bozeman! The doctor said he is doing well and his swelling is expected to continue to decrease over the next 6 months. We will continue to keep in contact with the doctor by sending pictures and return to Salt Lake in 3 months … thrilled at this news!!

Despite the really great news and excitement we are feeling, I am a little nervous to bring him home. I am nervous for him to fall and bump his head. I am concerned that he will have increased swelling. I feel hesitant to let him sit alone or in his bouncy chair or even to try to crawl. I am reluctant to leave him alone for any length of time and I am nervous that he may not tolerate decreased amount of pain meds. So many thing going through my mind!  However, the Doctor said all of those things will be fine (hitting his head, bouncing in his chair, etc).

So, in addition for safe travels prayers (we’ll be driving half-way home this afternoon & the rest of the way tomorrow -Friday), please pray for Josh and I to get some rest as we will be trying to get back into the swing of things once we get home. Pray Mason’s pain is well controlled. Pray for Josh and I not to be too overprotective but “just enough” protective. Pray Mason swelling decrease quickly and that he can enjoy all the things baby’s should…bouncy chairs, crawling, rolling around on the floor, etc.

Just another HUGE thank you to all of our amazing friends and family!!!! This has been a traumatic and scary thing in our life and we are so happy that we have had incredible support and an overwhelming amount of prayer from you all! We love you!

Recovery continues … discharged from Hospital!

(from Josh)  Well, here we sit in our hotel room – both of us on our laptops responding to numerous emails and Facebook messages from so many wonderful people … yet, we have a keen ear to the side of the room to make sure Mason is still breathing, etc as he sleeps peacefully in his pack-n-play.  I think we are both so overly “fried” from the past few days that it puts us a little on edge.  Mason is doing really great, though … Praise the Lord!

We “checked out” of the hospital this afternoon around 4:00pm … ’twas the most wonderful feeling in the world!  But, it was soon topped a few hours later as we were sitting in the hotel room as a family, eating dinner together and enjoying Mason be his old crazy self!  Mason’s personality is still “in there” … he was doing his trademark “head bob” and smiling and laughing at Holly and I.  He is still fairly swollen, especially around his forehead.  The physicians told us it would take 2-4 weeks for the noticeable swelling to go down and up to 6 mos for the deep swelling to go down.  His head is definitely shaped differently … you’ll notice the first time you see him (which is exaggerated by his shaved head and huge scare) … but, we like his new “look” and are so grateful that his condition was treatable and not terminal.

All is not “roses” though … Mason is relegated to only Tylenol and Ibuprofen due to his allergies to the narcotics.  So, we have to give him his doses every few hours, orally.  He DOES NOT like this … Mason grew so afraid of the nurses poking and prodding him and forcing medicine down his throat that he now starts screaming at the sight of a syringe.  We have tried mixing it with his food and he is starting to get wise to that as well (see image above – that is the face he uses to refuse the food) … smart little bugger!

So, huge prayer request at this point -> that Mason would trust us to administer his pain meds either with the syringe or “hidden” in his food.

Timeline – we are hanging out in SLC for another day.  We have a follow-up appt with our physicians on Thursday morning. Then, we’ll make our way back toward Bozeman … hopefully all the way back to Bozeman on Thursday, but we’ll likely have to stop and stay somewhere along the way.

Many thanks, once again, for all of the prayers and support … they were definitely felt by all 3 of us!

 

Recovery time

(From Josh) Phewwww … that was the longest 3 days of my life!  We are officially out of the PICU and in a recovery room (as of yesterday, 2/19 at 5:30p) with Mason.  He is doing so much better!  Praise God for covering him in His perfect protection while we were in Intensive Care.  As I mentioned in a previous post (here) – we had quite the roller coaster in the PICU after Mason’s surgery last Thursday.  A few highlights below …

• Low hematocrit – Mason had to have a transfusion during surgery due to the amount of blood loss during this particular procedure (this was expected).  Right after we got to see him in the PICU, he lost quite a bit of blood out of the drain tube in his head – this put him at a really low Red Blood Cell count (and, resulting low oxygen delivery to his cells) for the next 24 hours.  Finally, after a night of very low blood pressure drops, crazy heart rate fluctuations and lots of bells and whistles on monitors keeping us “on our toes” – we had to give him another blood transfusion in the late afternoon of Friday.  His hematocrit levels came back up within an hour of the transfusion and we thought we were in the clear.
• Rigid abdomen – somewhere during the stress of Mason’s low hematocrit and irregular breathing, etc … we realized he had a very rigid abdomen … you know, like when they have to do emergency surgery on Grey’s Anatomy :).  After some fancy x-rays and some very stressful moments, we found out that it was just a gigantic gas bubble that Mason finally passed about an hour later.
• Allergies to pain meds – It took the doctors awhile to pinpoint, but we realized that Mason has some pretty bad reactions to some narcotic pain medications.  Mason had been really itching his face and made it even more swollen and inflamed during our second day in the PICU (side effect of the Morphine and Hydrocodone). That night (Friday), Mason started doing some really weird breathing patterns, holding his breath and then not breathing for long periods of time.  We often had to shake him to remind him to start breathing again.  Basically, the Morphine and Hydrocodone were being metabolized in his body, he was suffering through all of the negative side effects and gaining little pain relief.  Finally, at about 5:00am – one of the doctors realized what was happening, prescribed a Narcain drip and flushed all of the Narcotics from his system.  We tried a different form of  narcotic pain medicine and within 20 minutes he was basically stable.
• Head wrap removed – on Day 3 of recovery (Saturday morning), when Mason was more stable, his head wrap was removed.  For the first time, we were able to get an idea of what his new “dome” will look like and see his sweet scar.
• Drain removed – on Day 4 of recovery (this morning, Sunday), Mason’s drain was removed from underneath his skin around the front of his skull … this is a good thing, although it sounds kind of nasty.

As I am writing, I am smiling ear-to-ear and tears in my eyes as I watch Holly rocking a sleepy Mr. Mason (see picture at left) … the first time he has been out of his bed! We will possibly be released from the hospital tomorrow (Monday) or maybe Tuesday, depending on Mason’s hydration and swelling levels.  We will stay in Salt Lake City for a few days of further recovery for Mason in the hotel.  Then, we’ll have a follow-up visit with the physicians on Thursday morning, prayerfully returning to Bozeman on Friday!  Many, many thanks for the thoughtful prayers, gifts and support for Mr. Mason … Holly and I lift up high, the praise to our BIG BIG God … there is no way Mason would be at this point without Him and without all of your prayers and support.  Thank you!

A few folks have asked for specific prayer requests as we move forward with his recovery … see below.

• Mason’s swelling and pain levels … less swelling = less pressure & less pain
• Mason’s oral pain meds … that he would tolerate the oral meds and not vomit … vomiting = increase in cranial pressure and more pain
• Night times … that Mason would sleep soundly and feel comfortable during the night.  And, that Holly and I would be able to catch up on some much needed sleep.
• Travel back to Bozeman … that the roads would be good so we can make it home in 1 day, that Mason’s pain levels would be very tolerable and he would sleep a lot.
• Return to Bozeman … that we would be able to take care of Mason well, control his pain and recovery, and return to a normal schedule/rhythm very quickly

**********

Now from the mommy perspective (as I sit here watching a really sweet Dad rock Mason to sleep):

I am pretty sure this is the hardest thing I have ever had to endure. To describe in words the heartache of seeing your child in excruciating pain would not even come close to what my heart has actually felt over the last 4 days.

For some reason, I thought surgery would be the hardest part. It was hard. The doctor and the anesthesiologist walking away with Mason (in a really cute little hospital gown) broke a little piece of my heart. I hated to see him go. I wanted to be there with him. However, as we waited for 6 hours we received updates from the surgeons and/or one of the nurses every hour. This and a whole lot of prayer helped ease my worries. I knew he was in great hands of the Doctors and the ultimate Physician and doing really well under anesthesia. It was after the surgery when we went in the PICU that another huge piece of my heart broke. To see my little baby curled up on his side with IVs, catheters, oxygen tubes, heart monitors and a huge wrap around his head was almost more than I could take. I felt like I had done this to him. I felt like I blind sided him or tricked him. That morning everything was great (before surgery), we were playing and having fun and then here he was lying in pain not having a clue what happened.

The following two days are blurred together but I can say it was the most awful experience I have ever had. To see your child in that intense amount of pain is horrifying. The two days after surgery was a downhill slope for Mason. We watched as he continued to loose an abnormal amount of blood, scratched his face (because of the narcotics) so bad that it was swollen and bleeding, had trouble breathing to the point where he actually stopped breathing, had to have a second blood transfusion and rolled around in his bed moaning in pain. I am not sure that picture will ever get out of my head.  I would have traded places with him one hundred times over if I knew it would take away his pain.

After 2 days of this, a Doctor finally figured out that he was having an allergic reaction to the narcotics. Within two hours of a reversal of the narcotics, different pain meds and oxygen he was a completely different person. He was actually resting (not just a drug induced sleep) comfortably and breathing on his own. It was amazing! My heart finally felt a little lighter. I could actually look at him and not want to rip my heart out in pain.  The rest of the day was still concerning. We stayed in PICU to make sure he would breath and make sure the current meds were working.

The next 2 days have been so much better. He is wanting to eat a little, his pain is under control and he is even trying to be a funny guy. He waves at the nurses and always wants to know what his dad is doing. I actually got to hold him today which was the best feeling in the world!!!!! I cried tears of joy as I sat there snuggling my little man.

I am so glad we are approaching the time we get to go home. I am extremely nervous, but that’s another post for another day. I am extremely thankful to all of our great friends and family who have been, and continue to be a great support for us. I am immensely thankful that Mason has an ailment that is fixable and not terminal. I am thankful that he will actually be better than he was before. I am surpassingly thankful to the Great Physician who is healing Mason and for Him giving Josh and I the strength to get through this process.

Psalm 139: 13,14 – For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Out of PICU!

(From Josh)  Hi all.  We have good news to report – Mason was moved out of the PICU at around 5:00pm today … praise the Lord! He is real stable, real swollen (as expected) and resting soundly in the hospital “bed/crib thing” right next to me.  It was quite the roller coaster ride in the PICU for him, and for Holly and I.  We’ll put out further details tomorrow after some much needed sleep tonight … Holly has the 9-2am “shift” and I have the 2am-7am “shift”.  Many thanks for all of your prayers and support.  Mason is so lucky to have so many people that love him from across the country!

Game Time – 8:15am

(from Josh)  Mason’s surgery time is set for 8:15am tomorrow morning (Thursday).  The reality of the intensity of the procedure is settling in on both Holly and I today.  We are fully confident in God’s protection over our little man and the competence of the surgeons and hospital staff … but, it’s still going to be a really hard day.  Please amp up your prayers and thoughts over little Mason tomorrow.  His surgery is scheduled for 5 hours – prayerfully, everything will go very smoothly and it won’t take that long.

We appreciate all of you!  We’ll keep everyone updated as soon as he is safely in recovery in the ICU.

Hospital – Day 1

(from Josh)  Day 1 at the hospital was successful, and not too stressful … actually, it was very reassuring.  We met with the physician team (Dr. Kestle, the Pediatric Neurosurgeon & Dr. Sadiqi, the Pediatric Craniofacial Plasticsurgeon) and they were super helpful – comforting, yet realistic.  They described the procedure and recovery in more detail for us … the surgery will last 5-6 hours in total.  Mason will go to sleep before any IV’s or drains are started … so, he will feel no pain (one of the things we were most worried about) and the opportunity for him to be really scared prior to surgery is really low because they put him under very early.  We will be able to see him in the ICU about 20 minutes after surgery and we are able to stay right across the hall overnight in some rooms that are dedicated for families with kids in the ICU.

The physicians seemed very sure that Mason will have a quick recovery and we will be released from the hospital on next Monday.  But, we will have to stay in SLC for a few days before we drive back to Bozeman.  So, prayerfully we will be home next Friday, the 25th.

We were also able to view Mason’s CT scan from Bozeman and his sagittal suture (the one running down the middle of his skull from front to back) is indeed very closed.  After surgery, we will notice a big change in the shape of Mason’s skull and face … it will be  more round and perhaps, his gigantic cheeks will be more proportionate 🙂

The only hard part today was some x-rays of his neck to make sure there is no instabilities there – which could complicate the surgery.  Other than that, it was a pretty easy day at the hospital.  Mason is now taking a nap (noon on Tuesday) peacefully and resting for a hard few weeks ahead.  It is our prayer that God is preparing his little heart and mind for what is to come, in a way that only He can do.

More tomorrow …

We made it to SLC

(from Holly)

Well, we made it to Salt Lake today. It was a fairly smooth travel day. Mason did great and Josh drove the whole time, so I had it pretty easy. However, that left a lot of time for me to actually think about what is going to happen in just a few short days.

Over this past week I consumed myself with work and getting ready to leave which didn’t leave much room for facing reality. On the drive today I realized how nervous and scared I am. I know God will protect Mason. I know he already has protected Mason. However, human nature gets the best of me and I can’t help but wishing this didn’t have to happen. I know he will be better after this surgery and yet I cannot stop thinking about how awful it will be when they wheel him away from me into the surgery room. This is literally heartbreaking to me. I want to protect him, to keep him safe, and I cannot do anything once he is out of my arms. I want to cry (and most often I do) every time I think about this.

I am not sure if these feelings are exemplified because I am a first time mom or if all moms would feel this way. All I know is I don’t ever want my child to feel pain if it can be avoided. I have spent the last week telling him I love him more and hugging him tighter.

Tomorrow we will start this whirlwind journey and I will have to lean on God more than I ever have for strength. I pray that I can keep the end result in mind. I pray my incredible little boy will be in as little pain as possible and that he will not feel lonely for a minute. I pray that he will feel God’s love surrounding him when I cannot be with him.

His first appointment will be at 10 am (on Tuesday). We are looking forward to meeting the surgeons in person and seeing the facility where Mason will spend the next week or so.

More to come…