Tuesday, October 30, 2012

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. 

Saturday, October 27, 2012

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!

Wednesday, October 24, 2012

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!

Monday, October 22, 2012

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!

Friday, October 19, 2012

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!

Wednesday, October 17, 2012

Recovery and Requests

We forgot that things can change so quickly in the ICU. They are going well, then great, then possibly horrible, then stable, then... you get the picture. Yesterday, Mr Boy was very stable but today he's been up and down, but overall ok. A remedy for one problem creates a new problem in another place and on and on. We've had quite a few kidney scares. Just now, we had 2 surgeons and several Doctors in the room all at once, discussing the severity of current worries. Everyone thought we had about 2 scenarios which both led to emergency surgery and one which would have led to re-opening Mr Boy. But those were ruled out after a special x-ray and now its much less tense around here and everything seems ok. It's mind-boggling how fast things can change. We are so thankful that everything is fine now. I've just kinda been singing worship songs in my head and staying clam through all this because of that. We are so confident that Mr Boy is in the Lord's hands that even in these insane moments, we can be still and know that HE is God. We are not strong, but He is and He is strong when we are weak.

They use beanie babies to prop up his extremities. 
 New Prayer requests: 
1.  Mr Boy is VERY VERY swollen and hospital staff is worried the swelling could damage internal organs and inhibit healing. Pray that Mr Boy's body will release more fluids to release all the pressure on his body which is causing problems.
2. Please pray that Mr Boy will remain comfortable even when they allow him to wake.

Random things we just learned about Mr Boy's body for the first time because of the surgery (mostly just interesting for Mr Boy to read later in life and things I don't want to forget... so this may be boring for most readers):
-Mr Boy has no appendix. No Appendicitis for him in the future! :)
-His liver is enormous and takes up half of his entire abdomen, just making the surgery more difficult, but also not a big deal.
-One kidney was hiding, but they found it.
-During the surgery they decided to give Mr Boy a wrap around his esophagus to help stop reflux, so they took his stomach and wrapped part of it around his esophagus. This is pretty standard procedure for reflux but it still sounds insane/crazy/cool to me.

The Orthopedic surgeon moved his external fixator (metal contraption) to aim the other direction today. 

Tuesday, October 16, 2012

Post-Surgery Update

Last night at around 2:30 a.m. we finally got the call we were waiting all day for.  They were finished with Mr Boy's closure surgery.  The surgery took just over 19 hours.  Everything went as planned however it took longer than expected due to the abnormal anatomy of Mr Boy's body.

Mr Boy is doing really well and he is stable in a very sedated state.  It is hard to see the little boy we know and love in such a condition but know its very necessary for his first few days after surgery.  The hope is to keep Mr Boy paralyzed and sedated to keep him from causing injury to himself. Mr Boy has some pretty large scars and a very intimidating hinge and rod contraption holding his pelvic bones together.  It will take some time to get use to the "new look" but its very relieving knowing most organs are in better locations:)

The next week is critical in Mr Boy's healing process. We need to keep him still so his body heals shut and doesn't open back up. Once this week is over, it should be less critical, but more pain management as he will be awake. The metal contraption will stabilize his bones for the next 6 weeks. I for one am already excited for that to be gone! :)

As we said before, yesterday was very peaceful but it was also long. We were quite dazed and drained by the time 2:30 came around. When we finally got to see Mr Boy, it was a little overwhelming. I am quite a queasy person when it comes to blood and wounds but my mind was telling me, "Mr Boy looks so much better than I expected." Apparently my mind can not overpower my body which was falling apart. Right away I felt faint and knew I would if I did not leave the room and sit. I had a little trouble breathing and composing myself, so David sent me home right away. After some sleep and a good breakfast, we both feel a lot better, but we are going to take advantage of this evening when we know Mr Boy will be out and stable, and are going home to sleep. I had planned on being here 24/7 until he comes home, but we are going to regain our strength so we can be there for Mr Boy when he wakes and really, really needs us. Overall, we feel so blessed that things are calm and going so well.
Psalm 147 1-5 Praise the Lord. How good it is to sing praises to our God, how pleasant and fitting to praise him! .... He heals the brokenhearted and binds up their wounds. He determines the number of the stars and calls them each by name. Great is our Lord and mighty in power; his understanding has no limit.

Monday, October 15, 2012

Mid-Surgery Update

Mr Boy is still in surgery but things are going very well. Up to this point, we are more than halfway through the surgery. We still do not know how much longer but have been told "a while." The nurse who comes and tells us updates has said that she has been a nurse a long time and can tell the mood in a surgical room.  She said that when she goes into Mr Boy's surgical room to check on the status, she can tell it is calm and peaceful.  From the moment we woke up this morning till now, we have felt an overwhelming peace.  In our weary moments we have been able to rest in the fact that so many are praying. We can relax and have actual joy and laughter. It is overwhelming, humbling and outright crazy to think of all the people we know, and all the people we have never even met, who are praying hard for our son. We have to thank you all from the bottom of our hearts for lifting us up in prayer all day. And I mean ALL DAY. The "Point is to Serve Church," our home church here in Sioux Falls, SD AND the church I grew up in, "University Blvd Church of the Nazarene" in Jacksonville, FL, both had prayer vigils which started the minute we arrived at the hospital this morning and will continue till 11 and 12 tonight. We feel so unworthy to receive this great outpouring of love and support, but gratefully absorb the blessings. The Lord is in the room with Mr Boy and guiding the surgeons and will be with us and Mr Boy every step of the way. We just want to rejoice in His power and strength, His mercy and love. Glory and Honor to HIM! 

  • "Then they cry out to the Lord in their trouble, And he brings them out of their distresses. He calms the storm, so that its waves are still."     Psalm 107:28-29

Thursday, October 11, 2012

Cramming in as much fun as possible.

The surgery looms before us, but we aren't letting that get in the way of fun! Last weekend we visited an apple orchard festival. This week Mr Boy is on lock-down so he does not get sick. We do not want the surgery postponed possibly months just for a silly cold. But that is also not stopping the fun!

Riding a train at the Apple Orchard

Mr Boy was given many stuffed animals when he was born, but I have decorated with them on the shelves around his room and he basically didn't know they were there. Well a few days ago Mr Boy noticed them for the first time and pointed to each one, wanting them down. He giggled and hugged each one and then proceeded to try and cuddle them all at once. 

He laid down on his back and piled them on all by himself. 

Saturday, October 6, 2012

The "BIG" Surgery Details - October 15th

Mr Boy is having surgery Monday, October 15th at 7am and will last all day and into the night. We call it Mr. Boys "BIG" Surgery, because it should be the biggest surgery he ever will have. It is also called his "closure" surgery because Mr Boy was born with his pelvic bone open like a book (and not protecting his abdominal organs), and several of his abdominal organs exposed and on the outside of his body. Most of his organs are back inside, but his bladder remains inside-out and exposed on the outside of his abdomen. It's hard to understand, and I wish we could explain it better with pictures, but we try to give Mr Boy a shred of privacy since most details of his life have been broadcasted throughout the land. So naked baby pics will remain Mr Boy's only. heehee. You are welcome Mr Boy. :)

Surgical details:
1. Put his bladder right-side-in (it's currently inside-out), reconstructing it and putting it inside his body where it belongs (requires stretching his skin over like a corset, as the Dr explained), leaving a vesicostomy for draining. (This will be revised later in life with future surgery.)
2. Pull his ab muscles over his tummy where they belong (since he was born with an open tummy, the ab muscles were pushed to the side)
3. Insert a G-tube (feeding tube port) in his tummy so we no longer have to tape the NG feeding tube to his face. A more semi-permenant option.
4. Cut his pelvic bones and fuse them together where they belong since they developed open like a book at birth, making his legs aim out to the side. 
5. And many more things to diffucult to try and explain

1. The surgery will be around 12-18 hours. Update: it took 19.5 hours.
2. Drs said it will be fraught with many, many risks and possible complications just because of the amount of organs and systems involved. May result in several follow-up surgeries. There is a high chance his body could re-open and the organs prolapse back out. 
3. It involves 3 surgeons: Pediatric Urologist, Pediatric General Surgeon, and a Pediatric Orthopedic Surgeon. 
4. They will keep Mr Boy asleep for a several days for pain management and he should be in the Pediatric ICU for about a week before moving to the regular hospital rooms for possibly a few more weeks as long as it all goes well.  Update: was kept asleep and in coma state for 2 weeks and in ICU one month. 
5. Mr Boy will be in external fixators (metal rods screwed into his plevic bones) for about 6 weeks. 
6. This surgery has no "blueprints" and Drs have to research, consult other surgeons and basically be "creative artists," when attacking it. Few Doctors (and by "few" I literally mean 1 and maybe 2 or 3) can really say they are "specialists" in this condition. About 14 babies are born with this each year in the US, so few Doctors ever see it. 

Prayer Requests:
1. Endurance, wisdom, and creativity for the surgeons
2. That the surgery would go better than expected with no complications.
3. That Mr Boy's care would be easier after this and he would be able to walk easier and eat! 
4. That Mr Boy will heal quickly and recover with little/no pain. 

Blessings we have already witnessed: 
1. We can have all Mr Boy's care at a hospital only 2 miles away from our home. Unfortunately many people have to fly hundreds of miles for care because this defect is so rare and complex, but we live in "the middle of nowhere" as some of you would say, and yet we have some of the best Doctors working on Mr Boy, who are compassionate and humble. 
2. Our hospital has one of the only Pediatric Urologists in North and South Dakota and he just so happened to come to our hospital a few months before Mr Boy was born. He specifically researched his condition at Vanderbuilt and wrote the section about it in a urology textbook. We are so blessed to have him! 
3. We know we were here in Sioux Falls, SD for a reason and have full trust in our Doctors. 

*No matter the outcome of the Surgery, we just want the Lord to be praised, honored and glorified. We are praying for physical healing for Mr Boy, but also have come to the realization that these bodies are just bodies and more important than physical healing for Mr Boy, we pray he becomes a man after God's heart. It would be lovely for his body to be whole, but spiritual wholeness is worth so much more. We have all the faith in the world that the Lord can easily heal his little body on this earth, but if it could bring the Lord more glory in Mr Boy's life through this, then we pray the Lord's will be done. Mr Boy can touch so many lives we never could reach, with these "defects." We ask the Lord will use this situation for His Glory in Mr Boy's life. 

Romans 5:2-5 And we[b] boast in the hope of the glory of God. Not only so, but we[c] also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.