Slide Show of Hoss' Surgery and Recovery

Update; 6 days post op

I promise to update today with pictures, planning on it during nap time today!  Everything is going perfect, he is happier than ever!  Thanks for your prayers as he continues to heal!
Angela

New Resource:  https://www.facebook.com/home.php#!/Cappskids  www.Cappskids.org

We are home early!

Unbelievable, this little guy is doing great and we got the choice to come home ealy!!   I am getting us settled in and will update later this evening, possibly in the morning... 

Post Op

Wow, so much has happened and changed since I last wrote.  First off, Hoss is doing awesome right now his disposition is amazing, happy, playful, full of smiles for us.  He is really swollen, both eyes are little slants for him but he is taking it like a champ!  He is however getting another dose of blood because one of his hemo's (trobin?) is low right now.  They will recheck it in the morning and evaluate it from there.

Last evening (first night after surgery) was a long one.  When I first got back to the PICU room, after his surgery, Hoss had woken up and when he saw me he broke into tears!  I was able to hold and nurse him for the first time which lasted for about 2hrs.  He was comfortable as long as the meds were coming every couple hours.  It was a hard cycle of me holding him to nurse and comfort him while I sat uncomfortably and unable to fall asleep.  I so badly just wanted to hold and comfort him, I wasn't going to put him down, and I didn't get much sleep because of it.  It was obvious when the pain meds would be needed bc he would begin to cry in pain.  The nurses were very quick to administer his meds when I pushed the button for help.  He did some vomiting from the meds at one point in the middle of the night but soon after was sitting up playing with his toes and giving the nurses and I his first smiles! What a miracle!! He woke up in the morning comfortably and then played softly with his toys and gave me reassuring smiles as I sang "you are my sunshine".  Not too long after he needed some pain meds and went fast asleep.

Hoss was so excited to see his sister today, he woke right up and sat up in my arms when he heard her voice!  Full of smiles too : )  Not long after we were moved out (11am) to the normal pediatric floor and were given a room with my own bathroom (yay!).  Hoss was pumped to see so many faces he loved at his side, he was kicking, and throwing his arms around to show us how happy he was.  It was really hard to believe he had just had surgery.  Well, his swollen head was evidence of that but otherwise he was just so well!!

The rest of the afternoon went great, barely needing any pain meds right now.  He wants me to hold him the entire time so I have been loving the snuggle time but it is also quite awkward and uncomfortable because of the caution I have to take with his head (drain tube) and millions of lines coming off his body.  I make it work though, it will be interesting to see how the night goes since he is not medicated enough to sleep without me.

As far as the swelling, it can still get worse through tomorrow : (  His eyes may close completely and me holding him doesn't help that situation.  The cranio/plastic surgeon was super impressed with his disposition this afternoon and had mentioned him maybe coming home late Friday.  However, now that he has had more blood tonight I am unsure if that may be a possibility??

Grant just came from work and Hoss, asleep in my arms, sat right up when he heard his Papa.  He was so excited to see him and was doing "big kicks" to show him he is still his little man! 

Wow, I do certainly feel blessed that Hoss has been so comfortable today.  I don't think that is so normal!  Please continue to pray for his quick healing, swelling, successful transfusion, and a good night rest for both him and I  ; )

((hugs))
Angela

Surgery Day

Praise the Lord, surgery was a success!

Last night it was so hard for me to go to sleep, I didn't want to wake-up and have it be "the day".  I managed to sleep great though, awoke to my alarm at 3:40am for Hoss's final meal before surgery.   We arrived for check-in at 6am and things moved along fairly quickly.  Hoss was so brave when they put the IV in him, he barely fussed at all.  My mom, the nurse, and I sang Jesus loves me while he was poked.  He loves that song, sister Sophia sings it to him all the time.  He was really tired from being up so early and snuggled right into me and fell asleep while we waited for the nurse to take him back to the surgery room. I let loose the tears when I handed him over.

My dad, mom, Grant, and I waited patiently in the waiting room.  We were updated at 10am that Hoss didn't cry at all when they took him into the room, the nurse said he was very calm!  It was at 11am that we got the ALL DONE!  We met with the Dr's and they said everything went perfect and Hoss was already breathing on his own and rubbing his eyes.  I cannot tell you how excited and anxious I was to know it was over and everything went great!  I couldn't wait to see him give him kiss and let him know that I was there.  It was about a 2 hr wait from then though until he moved from recovery to the PICU.

Hoss looks really great right now, he has hardly any swelling right now, but I have been warned that will change.  He opened his eyes once and looked at Grant and I and it really did just break my heart because of the way he look at me and then broke into a cry.  I comforted him and he was so groggy and tired and fell back into sleep.  He doing pretty good but I know the pain is there and it really really hard to see him push out tears and moan when he is bothered by the nurses.  Everyday will bring less pain and I am praying it happens fast.

I will be staying bedside tonight and for the rest of  the time.  In the PICU it is not meant for bedside sleeping and there isn't a bathroom for my use in the PICU at all.  They were not even suppose to let me stay but got the message that I would be "staying" in the wooden rocker without sleep if I must.  So when I arrived back they had a chair that pulled out into a bed for me ; )  I can't leave that boy, he's my baby. 

I am using a computer on a different floor right now and will update when I can and when someone can be with Hoss while I am gone.

Thank you for your support, prayers, thoughts, and love!!!  Keep praying for his pain and for the swelling to be minimal.

Angela

Night Before Surgery

I can't believe tomorrow is the day, it is extremely hard to grasp the reality of it.

The day starts early, we will arrive at the hospital at 6am for check in and will be with Hoss until 8am for surgery prep.  Prep will take 2-2 1/2 hours and then surgery will begin and take another 3 to 3 1/2 hours.  He will go into the PICU (pediatric intensive care unit) for at least the first night.  They will move him to the regular pediatric level after that for the next few day, going home on Saturday.  I have my bags packed and will be staying with him at the hospital.  I just found out that I get free meals since I am nursing and there will be a bathroom with a shower in his room. 

I will be updating the blog if and when I have access to a computer.  I am so thankful to everyone who has been thinking and praying for us during all this.  Thank you! 

Tuff Guy!

Update

Well things are moving along for us,  it is hard to believe the original date is coming up this week.  I have been feeling more anxious and scared about the surgery and recovery lately.  It's really hard to grasp the reality of it and how it will all play out.  It definitely has me holding on to Hoss a little tighter, I wish he didn't have to go through this.  It really is upsetting!

I am still trying to figure out the whole blood banking/donation situation.  The hospital didn't record Hoss' blood type so that makes it a little harder to find a donor for him.  Even though I am a universal donor, I don't think I am comfortable donating to him.  The risk of graft vs host disease is rare but also deadly if a blood relative donates and I just can't deal with the risk over my head.  I know it will work out it is just one of those things that needs to fall into place soon.

I read an update on the sweet boy Dean Wilhelm (same procedure) and am happy to report everything is going great!  His healing took him about 3 weeks to get back to normal, his headshape looks great, and he is doing everything a 9m old should! 

I wanted to show some pictures of Hoss' head shape, I just got these uploaded from my nice digital camera but they are a couple months old.  You can see how his head looks like a shape of a football. 

Bumped for Surgery; NEW Surgery Date

Well, I got a call this last Friday afternoon (July 16th) from the neurosurgeon's office and they had to reschedule the surgery for the 25th of August because the cranio surgeon had a conflict in his schedule.  I am not particulary thrilled about that but there isn't much I can do about it. 

Surgery will begin at 8am and Hoss will get checked in at 6am at Mary Bridge, surgery should last until around noon and he will be in the pediatric ICU (PICU) and should move to the main floor the next day for 3-4 more days.

The next decision I have coming up is about blood donation for Hoss.  Since he will most likely need a blood transfusion Grant and I wanted to donate blood for him.  Apparently there is a risk for blood relative donation called Graft vs Host disease which is rare but also deadly, oh joy!  I am going in for some more information on this topic and to learn about the other risks that go along with blood transfusion.  If you know about this stuff or have an opinion, please leave a comment or email me.  There is risks either way blood bank or blood relative and the botttom line is that we trust that God is protecting this little guy.  If we donate it will be two weeks prior to surgery and of course insurance doesn't cover it.  How backwards is that?  There is always a need of blood donations and yet they want to charge you to give your own blood for someone close to you!

We will see Dr. Eheret the cranio/plastic surgeon this Wednesday, I think he wants to look at the scans and talk about surgery.  We haven't seen him since we first took him into be evaluated.  I will update that evening.

Thank you for your thoughts and prayers, I know they are working.  I have been fairly calm, or more calm through this journey.  My breakdowns are rare and I know Hoss is in good hands.  I am definately concerned about this blood donation risk right now and worried about how well Hoss's pain will be managed after surgery.  He is so precious and even though he won't remember this I just don't want him to be in pain! Thanks for keeping us in your prayers!

Surgery date

Well, I finally have a date for Surgery; Wednesday August 11th

I am super anxious now that it is scheduled and can't wait for it to be done and over!

I will add times and more details soon...

Neurosurgeon visit

Hoss had his first visit with the Neurosurgeon this morning.  Dr. Morris gave more detailed information on the surgery procedure, got us rolling with the blood bank donation process, and answered my questions and concerns.  No surgery date still!  He will be scheduling that with the craniologist hopefully very soon, I know everyone is anxious to mark the date on there calender, as am I.

A few things I learned today from our visit; Dr. Morris does this procedure about 9 times a year, so it is a fairly common procedure for him.  Hoss's head growth is in the 95th percentile, so his brain is growing great!  The surgery (incision) will not increase risk for head injury while playing sports.  Nursing should be just fine after surgery, and we can donate blood for him (hopefully compatible)! 

That is it for now and I will update when we get the surgery date and go to the blood bank.  I need to schedule an appointment with Dr. Eheret the cranio guy again but we won't see the neurosurgeon until surgery day.   

CT Scan and Sedation

I meant to post earlier but today has been busy, so I apologize if anyone was looking for an update on the sedation today.

Hoss had his CT scan this morning, everything went well and I am sooooo glad!!  He had to fast this morning before his sedation and I can't believe that I couldn't get him to wake-up to nurse at 5am.  I really was hoping not only to get some food in his belly but to make sure his veins were plump for the IV.  He was absolutely not going to wake-up, I tried pretty hard too!

Of course traffic was worse than anticipated but we still made it on time to the appointment at Tacoma General.  My mom and my sister were a big help and met the kids and I there to help keep Sophia busy and for support.  The nurse was really nice and numbed up all his little wrists and ankles for possible pokes (two attempts in the wrist).  I of course didn't want the IV in his head but that is where all the good veins are!  Hoss was such a little trooper, he ended up having to get the IV in his head (which didn't get numbed first) and was put to sleep pretty quickly after that.  It is really strange to see how fast that drug works and it is definitely a weird feeling to see your baby sedated. The scan was like 5 minutes but they had to sedate him because the Dr's need a really clear scan for surgery.  He woke-up 35 minutes after they administered the drug, I gently stroked his cheek and and talked to him to wake him.  He gave me a sweet smile and I couldn't have been more relieved to see that precious grin.  He was a little groggy over the next 15 minutes but cooing, and hungry.  I was really happy everything went just right! 

Thank you to everyone who thought of us through prayer or other ways!  It does make a difference!  We will see the neurologist on Monday morning next week to follow up on his scans and get a surgery date.  I will update then.

CT scan rescheduled

I got a call today from radiology and there seems to be a problem with the insurance.  So, we are stalled on getting his CT scan and I had to reschedule for next Thur. morning on June 3rd.  Quite frustrating but some what relieved that he doesn't have to go tomorrow.  I'm just glad the insurance will work out and he will get his scan before he see's the neurologist on the 7th. 

The Begining

This is the begining of Hoss's journey with Sagittal Craniosynotosis (SCS).

Hoss entered the world fast and furious on February 8th 2010.  It didn't take long for us to notice the shape of his head and the prominent ridge that ran down the center of his head. Grant would comment on how "torpedo" like it was, just how he entered the world!  Hoss's head didn't change much though over the next couple weeks and so when he had his first check-up, the Dr. took note of his head shape and the noticeable ridge that ran down his head.  The Dr wanted to wait a couple more weeks to see if his head would begin to round-out.  This of course scared the hec out of me and I of course went home and googled key words from the appointment: sagittal, suture, head shape....I spent hours trying to find out what may be going on with his head.  The Internet did its job of sending me into panic mode and I was able to get a pretty good idea what may be going on with his head shape.   After another week or so,  it didn't take long for us to figure out we were going to be sent to a specialist, his head shape wasn't changing.  At his 4 week check-up, we were referred to see a Pediatric Craniologist at Mary Bridge Hospital, Dr. Ehret.  My heart sunk into my stomach.

Dr. Ehret made his conclusion within 30 seconds of meeting us, Sagittal Craniosynotosis, it was obvious to him. 

Sagittal Craniosynotosis is when the skull fuses prematurely along the Sagittal Suture.  Babies have free-floating skull plates separated by fibers called sutures.  This allows babies to pass through the birth canal easily and to allow the skull to grow with the brain.  Craniosynotosis is premature fusion of a suture, which restricts skull growth.   Premature fusion is most often said to be unknown but also thought to be linked to pressure in the womb.  Rarely premature  fusion can be gene related but it is a very low percentage. 

Interestingly, if you know about the labor process, Hoss dropped into the Zero Station 3 weeks before he was born.  He was stuck in my pelvis and probably had very minimal movement, this is when we expect his head fused. 

So what this means for Hoss is that his skull can't widen so it is accommodating by lengthening.  Fusion of the sagittal suture results in a long and narrow skull, with or without bulging of the front or back of the head.  The good news is that he shouldn't have any mental problems from this condition.  If we didn't opt for surgery he could risk issues due to increased pressure on his brain.

The word surgery is not easy for any mother to hear and hearing that they are going to cut his head open made it frightening!!  The Procedure to fix his skull is invasive and will most likely require a blood transfusion, 90% do.   There will be the Craniologist, Neurologist, and a Plastic Surgeon on board.  This type of surgery is optimal at 6 months of age when the bones are not too soft so they stay in shape when re-molded by the plastic surgeon.  So far we have only seen the craniologist and will be seeing the neurologist after his CT scan within the next couple weeks.  From what I know about the surgery, it will be about 5-6 hours and about a 4 day stay at Mary Bridge Children's Hospital in Tacoma, WA.  They will do a zig-zag incision from ear to ear and will remove bone, re-open the closed suture, and mold his skull back to a normal shape. 

This Thursday, May 27th at 9am Hoss will go in for his CT scan to confirm and evaluate his skull.  He will have to be put under for this so please be praying for him that morning.  I am nervous, so put me in your prayers as well.

It has been an emotional journey so far for me, I have been praying everyday, along with others, that Hoss would be healed.  I know through faith and prayer Hoss will get through this and he will be taken care of.

I have also found a support group through:  http://www.cappskids.org/board/index.php?s=a4a96678ed6d8c6cf730d925e660100c  This has helped me find other families who have gone through this and had helped me understand the journey of surgery and beyond.  Here is a link to a sweet boy name Dean who just went through the procedure successfully.  It is a media slide show:  http://secure.smilebox.com/ecom/openTheBox?sendevent=4d5459324f4467794e7a553d0d0a&blogview=true&campaign=blog_playback_link 

I do hope that this blog will not only keep family and friends updated and informed but also help someone in our situation as well.

Thank you for your thoughts and prayers!
-Angela