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.

                                     

From Tubes to Masks

Mr Boy got the breathing tube out today which means he also got to wake up. It wasn't as exciting as we expected because he was still fuzzy from the 2 weeks of narcotics, and absolutely terrified to find himself in the hospital. I suppose it was like waking up to find you'd been in a train wreck. He has no voice right now because of the a sore throat from the tube which should clear up soon, and the poor boy will probably be going through withdrawal from all the pain meds for weeks. They give him good meds for this as well, but he will still be grumpy from the withdrawal, on top of the obvious things that would make you grumpy like having your insides remodeled. :(

                                          They find things for us to do while we are here...

As it got closer to taking Mr Boy's breathing tube out of his throat today, he had to be weaned off the sedatives which led to the arm restraints. We didn't want him to pull out the tube before it was time!

Dave is modeling one type of breathing aid, the Bi-PAP. When Mr Boy first got the breathing tube out of his throat, they put this nose ventilator on him. However, he would have none of it, so after almost 2 hours of thrashing about and crying, we switched to the mask below, which was more comfortable. 

We call it the "Avatar mask"

I got to hold him! 

I am not sure if Mr Boy knew I was holding him as he is still pretty out of sorts and fuzzy. 

This was our happiest moment of the day, aside from a tiny smile we got while they took his mask off for just a moment. 

Drama Queen

I know in a few months we will look back on this time and think it went by fast and was no big deal. I will read back over these posts and think, "What a drama queen." Honestly it's only been what... 13 days so far? But right now, when I am staring at Mr Boy 24 hours a day in this intense condition, each hour can seem like a year and each "little situation" feel like an explosion. The "highs" and "lows" feel like mountain tops and ocean bottoms. If you ask me today how Mr Boy is doing, I would tell you, "Great! He peed a ton and looks much more like himself. They may even wake him up and take him off the ventilator in a few days." And you would never know that a few days ago, his heart stopped for 9 seconds and part of his lung collapsed. Who would have known that these things are not really that big of a deal? A big deal to his momma in the moment... but really not a big deal in the scheme of things.

Worst case scenario at this point is that Mr Boy will not have the strength to breath on his own due to the extra organs he now has, which are pushing up against his diaphragm and they would have to send him home with a trach tube in his throat for a few months. But, it is too early to tell and Mr Boy has been improving a lot. Last week we were dreading to see him wake up and watch him feel pain, but now we just miss him and want him to wake. Hopefully by now he is through the worst part of the pain anyway. He needs to wake up so he can cuddle with all his new stuffed animals!

Up and down.

Well, Tuesday has come and gone and while we were excited to get to this milestone (of not having to worry about his own muscles re-opening his abdomen), we have a new, very real fear of infection which could more easily eat away at everything that is holding his abdomen together and allow the organs to protrude back out. The surgeon said if this were to happen it would not be subtle, but kind of all at once and there is nothing they can do but pump him full of antibiotics and hope and pray that he does not get a deep infection. We hear, "he is not out of the woods yet," quite often and know we have another week or so till that threat subsides.

Mr Boy is also still too swollen to breath on his own because of the excess pressure on his lungs due to the excess fluid and having his bladder on the inside of his body for the first time, so he is still sedated and on the breathing ventilator. We really need him to urinate more. Lately we have been obsessed with tacking his urine output, making sure the catheters are still working and not clogged, and that he is peeing off enough fluids, so Dave and I just stare at his catheters all day long and hope for lots and lots of pee.

Every day, is another huge step toward full healing, and overall, Mr Boy is doing ok. We haven't had any huge emergencies, but each day is like a roller coaster of heightened emotions as we dart around potential emergencies and frightening close-calls.

We are wanting to get to a place where we no longer have to worry about something horrible happening and can just focus on Mr Boy. Thank you for your continued prayers and messages of encouragement, we can not express how much we appreciate them!

Waiting Game

Mr. Boy was taken off the paralytic drug Saturday and has started to twitch and move his limbs slightly. This has helped take his swelling down and he is looking much more like himself. He is still very sedated and they give him continuous doses of pain meds, but he grimaces with each movement, which is hard to watch. His eyes have opened ever-so slightly from time to time. He is still on the breathing ventilator and will be for a few days to weeks (nothing is ever certain with these things). They say that by Tuesday we will not need to worry as much about Mr Boy waking up and possibly busting everything back open by squeezing his muscles, so needless to say, we are excited to get to Tuesday.

We are both dreading and longing for him to wake up, but are so nervous about the pain. I think about the pain with my c-section and think if I multiply that by 10..... ugh. But some things we've learned about Mr Boy is that he is strong and he is in the Lord's merciful hands.

So thank God for his marvelous love for his miracle to the children he loves. Offer thanksgiving sacrifices. Tell the world what he's done-sing it out!  

Psalm 107:21-22 MESSAGE

The afternoon before surgery

Playing in the fall leaves with Tina!

Sleeping Beauty

Mr Boy will stay fully sedated another several days if not a week for pain management. He has really started getting rid of the excess swelling and fluids, so that has helped many things. He has had a temperature on and off since last night, so now they are a bit worried about infection, but are giving him strong antibiotics for this so hopefully it won't spread or get worse. The Drs mentioned they will probably keep him in the Pediatric ICU several more weeks and even when Mr Boy wakes up and is playful, simply because there are still so many things to monitor and if something were to go wrong, it could get horrible fast. But nothing will go wrong, so we don't need to worry about that! :)

Mr Boy's Urologist/Surgeon, Dr Demarco, says we just have to, "hurry up and wait," at this point. Every day that passes without incident is another huge victory. The Urologist also humbly mentioned that the surgery part (all 19 hours of it) was possible 30 years ago but the kids would have had horrible complications afterwards, and it is only the wonderful ICU and aftercare technologies we have available today,which really keep him alive in this day and age. He says all Mr Boy's success is due to the nurses and the great after-care teams we have here and he is impressed with this hospital's care, more than any he has been a part of thus far, which is so encouraging when you want the best for your kiddo. This is why I love Dr Demarco; he is so humble yet obviously so talented and amazing. I told him we would still give him a little of the credit. :) Praising the Lord for incredible Doctors and nurses!

Mr Boy got new eye ware which is made from gel, to protect his eyes since they would not fully shut. Spa Day!