Over the Hump

This afternoon was the first time Mr Boy, David and I have been alone together in 6 weeks. The first 5 weeks were the hospital where you are NEVER alone. I don't care if there is no one in the room with you... you are not alone... glass doors and a nurses' peep window ensure it.  And this past week my family was here and don't get me wrong, it was AWESOME. We loved it. I'm just saying it's crazy to think that we have not been alone for 6 weeks. There were plenty of times in the hospital when I told myself that the second I was finally alone I would scream and cry for a few hours to let it all out. I bottled up all those moments when I just needed to scream and cry, inside my heart till the moment no one would see it; the moment I was finally alone. At times I felt like I could burst. And I know David felt the same.

But the time has come. We are finally alone and we can honestly say that all the horrible, hard moments we watched Mr Boy endure are mere memories and the joy of seeing Mr Boy doing so well, has settled in. I no longer need to "let it all out," because, "it," has mostly dissipated. There are plenty of hard moments each day: Mr Boy still withdrawals, some of these medical devices need magicians to work properly, g-tubes hurt the skin and wounds leak a lot. But there is a peace about life. We have crested the "hump" which we were dreading for 2 years and are on the down-hill.

Philippians 4:7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

HOME

Mr Boy was discharged from the hospital at noon on Thursday. We were all very happy to be home! Mr Boy was a little frustrated to find he could not walk or crawl although he did try his best to do so. With all the moving around he did, he woke friday morning with the bolts on his metal fixator popped off the rods in his pelvis. We rushed to the Orthopedic surgeon's office who said, "what do you think about just taking them off?" I said, "that would be wonderful," as I stifled the urge to jump up and down and scream for joy. They took off all the nuts and bolts and unscrewed the rods from his bones right then and there, a week and a half early!

Mr Boy doesn't seem to mind wearing his BI-PAP mask to help him breath while he sleeps. He even tolerates his leggings. :) I walked into his room to talk this picture after we thought he had been sleeping for a while and I heard him yell, "cheese!"

My mom came last week to help with the transition from hospital to home, and will be here through Thanksgiving. We got home from the hospital just in time because my sister flew in Friday with my new nephew Mr D (so sad my brother-in-law Daric couldn't be here too!).  And my dad flew in today! We are thankful we will have a Thanksgiving full of family in our own home and not the hospital! 

Notre Dame, Denver Broncos and Jacksonville Jaguar Pride!

We've been truly thankful to be home and couldn't be more grateful to all of you who prayed for us and for Mr Boy through all this. He has healed so well. The wound is looking better all the time and he even crawled a few feet today! I know his strength will be back in no time and he will be walking and and functioning better than he was ever able to do before.

Home on the Horizon

Mr Boy should be discharged from the ICU tomorrow and we will go straight home! All day we've been getting things ready... last minute appointments made, medications ordered, supplies stocked, and instructions given on new equipment and care for Mr Boy at home. After one month and 4 days in the hospital, we are ready to go home! This past week has still been hard as Mr Boy continues to have mood swings associated with withdrawal from the pain meds, but each day is better. Mr Boy will be going home with his Bi-PAP breathing mask and machine for nightly wear, hopefully just for a few weeks till his lungs get stronger. He gets the metal rods (external fixator) which keep his pelvic bone in place, off in 2 weeks. As excited as we are to go home, we will miss all the amazing nurses we have spent so much time with along the way! :)

Mr Boy's monkey slippers as well as mommy's sock covered in stickers, serve well as bumpers for the ends of his metal external fixator.

Mr Boy was finally allowed to eat yesterday although he still won't swallow anything harder than apple sauce. He still had a ton of fun playing with his food and mostly feeding himself spoonfuls of ranch dressing!

 Enjoying the taste of mac & cheese before spitting it back out and trying to hand it to me. Swallowing solid foods is still scary for him after 2 years of vomiting many times a day.

He saw my camera and said, "cheese!"

Mr Boy loves to cuddle with daddy
and wouldn't let him move

Toy Story (3 weeks post-opp)

This blog is entitled "Toy Story" for two reasons: firstly, we have watched the movie about 20 times in the past 5 days and secondly, the story of our lives these days is finding just the right toy at just the right moment. This past weekend Mr Boy became himself again and the withdrawal symptoms have been less and less intense as the week has gone on. He has really, amazing playful moments where there is no pain or a care in the world and then really low moments of screaming and thrashing about, when typically only morphine seems to help.

There is no more fear that Mr Boy's organs could prolapse out, so it feels like we are finally, "out of the woods!" Some of the things that happened after surgery combined to create a pretty huge wound on his abdomen which still seems to be getting worse, no matter what we try. They may have to graft some skin over this area after a few months if it doesn't eventually heal up. There was not skin in this area originally, so even if it does heal, it will just be scar tissue. Mr Boy can impress the ladies someday with his battle scars. :) 

Doctors would let us go home with the wound as it is, so now the only thing keeping Mr Boy in the ICU are his lungs. His tummy finally "woke up" and started working, so we are close to being off the IV nutrition and on to fully feeding him through his g-tube. But as we've said before, with his newly constructed bladder adding pressure to his lungs, he's got extra work to do in order to keep his lungs open. Not to mention he was sedated and paralyzed 2 weeks, so his lungs are a lil weak. He is still using a Bi-PAP mask while he sleeps but is on to the nasal cannula during the day. As soon as he does not need extra help to breathe, we are going home!!! Maybe next week sometime? 

Monday will be Mr Boy's one month anniversary in the PICU. What a crazy month its been... thankfully we know Jesus because I don't know how else we would stay sane. 

watching toy story... what else?

Yesterday was Mr Boy's first time out of the room!!! 

balloon therapy

The past few days since Mr Boy's breathing tube came out and he was able to wake up, have been rough. He has been shaky, irritable, uncomfortable, wanting to be picked up but can't be, and has many fits where he tries to get his breathing mask off, fighting anyone in his way. Yesterday wasn't any improvement until Daddy got off work and came for the evening. As soon as Dave got here, he got Mr Boy to smile and play with a balloon! I couldn't get a smile from him all day, and he was too weak to even hold his lil Thomas the Train, even though he tried. But all Dave had to say was, "touch my beard," and Mr Boy's hand went up to feel daddy scratchy chin and joy spread across his face. It was one of the first glimpses we have really seen of Mr Boy being "himself." Here is a video of Mr Boy playing with a balloon right after Dave got here yesterday.

                         

The nurse told me last night he woke up and pointed to a helium balloon in his room, which she then tied to his metal fixator (the rods holding his pelvic bones together). He batted at the balloon for 20 min before crashing again. I woke this morning to find him trying to make animal noises while his face was getting a rest from the breathing mask. He couldn't quite get them fully out, but he smiled while trying.