On the other side... Again!

Well we successfully made it to the other side of another cranial surgery for Miles. I'm sorry if I left anyone hanging after I posted about preparing for his surgery. This second surgery went well from a medical standpoint but was difficult for us emotionally while in the hospital and recovery.  I am finally able to talk to people about the immediate surgery recovery in the hospital and recovery at home without crying.

The surgery took about 2 hours, which was quick compared to his first surgery. But then started recovery. On one hand it was nice this time around to be there with a child old enough to tell us when he was in pain or when he needed something, but on the other hand it was tough because he didn't understand why he had to have the pain or why he had to stay in the hospital. It was heartbreaking for pretty much the first 48 hours after surgery. Then his pain started to ease up and he got off the heavy duty pain meds.  He started to smile occasionally and play the iPad for short periods. Then after 4 days he was ready to leave the hospital. He had a lot of facial swelling, which was expected. We were all thrilled to get home and really start recovering!

About a day after we got home, Miles started having severe stomach pains along with nausea as well as a metallic taste in his mouth 24/7. This was very distressing to him. It was tough to take after watching him in pain while in the hospital and thinking all was going to go uphill after we got home. We called his surgeons/doctors to find help and each of them referred us to the other ones. Ugh!  Well one night we took him to the ER because his nausea became worse and he was very lethargic and not acting himself. They did all sorts of tests at the ER to make sure it wasn't due to some complications from surgery. All tests came out normal thank God!  They gave him a prescription for Zofran which greatly helped his stomach pains. He was on that for another week while we were trying to figure out the cause of it with our pediatrician. And medicines were not easy for Miles - he resisted taking ALL of them.  There were days it would take us an hour to get him to take one medicine.  That was stressful and exhausting for all of us!  On the day that our doctor was going to refer us to a GI doctor for the issue, the stomach pains were finally gone. The pediatrician and surgeons thought maybe he had developed the gastritis either from the heavy duty pain meds he was on or the antibiotics. We don't know for sure but we were glad that was over!

So three weeks after the surgery we felt like we were truly on the other side. And just about 5-6 weeks after the surgery, the metallic taste has finally gone away. Poor kid, as if he didn't go through enough already.  😔

This was tough to take emotionally for me as I desperately wanted to see my son back to his silly, energetic self and it seemed as if it would never happen!  It did though, and I can happily say that my momma heart is happy and he is back to normal. Nick was the rock through all of this.  He kept a hopeful, positive attitude the whole time and made lots of calls to the doctors when I was too anxious to talk to them. The hospital was exhausting and emotionally draining and he never left Miles' side.  We had a room at the Conine clubhouse where you can stay for free if your child is in the hospital. It was walking distance from Miles' room. Nick insisted that each night I go to the room to sleep while he stayed by Miles so I could de-stress and find strength to handle the next day. He knew I needed that and it was so helpful. I am one lucky woman to get to parent alongside this strong, amazing Dad!

I have included some pictures from the hospital and home recovery.  The smiles were far and few in between for a couple weeks because he didn't feel well, but we were able to catch those smiles when they happened.  This kid is a tough little guy.  :) 





Our first look at him after surgery.



Recovery, not very happy.

 

Not too much we could do for him.

 

About 24 hours after surgery, finally felt well enough to watch TV.

One of his first smiles.




Finally felt well enough to play some games on the iPAD.

Starting to feel better.

 



First view without the bandages!!



By day 4, had a lot of swelling on left side of face, which was expected.  They took the bone graft from the left side of his head.  Miles called his swelling "my blobby eye."  :)

4 days after surgery, they gave us clearance to go home! 



Get me out of here!

Fist bump with nurse Jency who prepped him for surgery - she was happy to see him on the other side. 

Being silly, swelling decreasing.

 

Swelling almost completely gone, 1.5 weeks after surgery.

 


 

Look at him now, still healing on the inside but back to normal!  No more swelling, no more pain.  :)

Here We Go Again...surgery #2

Well, since we haven't updated this blog since 2013, I think it is fairly obvious that things are going well with our family and we've been busy!  One major update is that Miles and Maxon have a little sister Myra now who is 2 years old and is a great mix of sweet and spunky. 😊  This blog started out as a way to keep our family from afar up to date on our kids and family happenings.  Well, I'm just going to be honest, blogging isn't for me and I just don't have time for all that. I post enough pictures and things on Facebook to cover that. So then we used the blog to keep people updated and also for our own memories, specifically related to Miles' journey with craniosynostosis.  And that is why I am updating now...

Miles is doing great almost 4 years after his first surgery and is a smart, funny, rough and tumble 4 year old boy. His head shape is great and he has not had any re-fusion of the bones. What he does have though is a couple areas where his bone did not grow in. The holes are large enough that they need to be filled in order for him to have adequate protection for his brain.  So he is going back in for surgery on July 25. They will take a layer of bone from another area of his skull to fill in the holes and anchor it with small titanium plates. This will not effect head shape and he will not need any more helmet therapy. He will end up with larger incisions which means larger scars, but the plastic surgeon is going to try to make them as minimal as possible. And in the end, we all know that it is just cosmetics and CHICKS DIG SCARS.  😜

Miles is in good hands for the surgery with the same surgical team he had for the first surgery and at the same hospital. He will be in the hospital for 2–3 days and then home for 2 weeks of recovery. Then back to life as he knows it (so the surgeon says, but maybe difficult for this momma to allow). The boys and I went for a tour of the hospital this past week and Miles was not nervous and the nurses were so great with him. He is very excited to go back and get more Popsicles. 😊  I will post some pics of our tour.

We will appreciate prayers for him to stay healthy leading up to the surgery so nothing is delayed, for the surgery to be successful with no complications, and for recovery to be quick with no infections.  We trust God with all things and know that he has gone before us in all of this.

Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.” (Deuteronomy 31:8 NLT)