Merry Christmas Eve

10 Things that helped make our Christmas Eve a great one:

1.) The Hoeh family...20 years ago they lost a son near Christmas in the hospital. On Christmas Day, someone brought them a meal at the hospital. To remember and honor that kindness, their extended family now prepares and serves Christmas Eve dinner at the Cincinnati Ronald McDonald House, and even makes sure Santa shows up at the end of the meal. What an example of service!

2.) D.J. (we've previously requested prayer for him and his foster mom Terry) was able to move from hospital to RMH today...awe

some!

3.) Leander (a 2 1/2 year old guest at the RMH) was able to have his 1st successful bronch ever yesterday, and the doctors discovered he has vocal cords (they've never been able to confirm this before)...and his parents' smiles afterward.

4.) Family around the country...wish we could be with you on Christmas, and we hope you have a wonderful day!

5.) Prayerful support of many people.

6.) Referrals of 2 beautiful Rwandan children which came earlier than expected but right in line with God's timing.

7.) The opportunity to be at an outstanding hospital with an outstanding medical staff.

8.) A smooth day for Josiah.

9.) Graeter's Ice Cream

10.) Luke 2

Merry Christmas to all, and to all a good night!

An overdue update

Sorry I haven't updated in some time, but it's been a busy week. Still having some issues with Josiah's recovery...you can check his CaringBridge website for more on that. A few things have happened on the adoption front in the past couple of weeks. First, we formally accepted our referral. Second, we were sent a few additional pictures of the kids...we can't wait until we pass court and are able to share them (and other information) online with you! Third, our Power of Attorney (POA) is working on getting our court date, so hopefully we'll know about that this week.

Two quick stories showing how God is continuing to bring our family together from around the globe:

This past week during one of his medical appointments, the nurse asked Josiah if he has any brothers and sisters. Without hesitating, he said "I have 2 brothers and 1 sister." Of course, he also added that his sister's name is "Adopt" (as this is what he's insisted we'll call her for many months now)...

Got an email from our POA this morning, and in it she said: "...and they know they are siblings now."

Silas and I fly to Cincinnati tomorrow so we can spend Christmas week with Shelly and Josiah. We're eager to have our family (at least 4 of us) reunited for the first time in almost a month...can't wait until our family (all 6 of us) is united for the first time ever!

Hanging at the RMH and a Night at the Zoo

Someone called tonight, mentioned he hadn't seen an update in a while, and wanted to make sure everything was still o.k. Sorry about our break from providing updates...w

e've just been adjusting to (and enjoying) life outside the hospital. Until his next bronch on Wednesday (12/16) we're not sure how many updates we'll post because there's not a lot going on respective to his health situation.

However, we're pleased to say we were able to move him to RMH yesterday, and he's enjoying the change of scenery. He sleeps in our room with us, eats meals with us, and loves to wander around the RMH (which is a pretty big place). More good news is that he did very well during the night last night. Before we were discharged, the nurse practitioner on the airway unit emphasized that we are to contact them if he shows any signs of breathing difficulty, reiterating that the reason they want us across the street at RMH is because it's not uncommon for kids to have to be re-admitted to the hospital. However, so far he's doing great, so we're hopeful our next trip to the hospital will be on Wednesday for his bronch.

I (Art) will fly back to Glorieta on Saturday night, as caring for Josiah at RMH is not as physically tiring as doing so in the hospital. In addition, Shelly's mom will arrive in the next day or two to assist Shelly and give Josiah another familiar face to see. The rest of our schedule the next few weeks is on hold for now...Silas and I are supposed to fly to SC for a family wedding on 12/17 (the day Josiah and Shelly were originally scheduled to fly back to NM), but as the doctors now feel it's likely Josiah will be here at least through Christmas, it's more likely Silas and I will fly back to Cincinnati so we can spend Christmas together as a family. That decision will be made after the bronch on Wednesday.

Tonight the Ronald McDonald House took a van shuttle to the Cincinnati Zoo (about 1/2 a mile away) so we could see the Christmas lights at the zoo. Josiah's been so excited to attend so I bundled him up and we had a father-son night out. The lights were wonderful and abundant, and I mostly just followed Josiah around everywhere he wanted to go. His favorite thing was a display featuring two white tiger puppets who cracked jokes, sang funny songs (Josiah liked the one about Santa's underwear), and interacted with the crowd. We went back to see this four times. He and I had a blast spending time together. Before leaving, as we were heading down the hall to the lobby, I had the feeling I'd forgoten something. I went back to the room and asked Shelly if we needed to take anything, as for the past 5 years going out with Josiah has required a large backpack (suction machine, emergency spare trach, HMEs, etc.) and usually oxygen. She said "No, you don't need to take anything." It's hard to explain how surreal and precious that moment was...if you've ever seen us out and about, you know that we typically don't travel lightly, but tonight Josiah and I just grabbed our coats/hats/gloves and headed out like most fathers and sons do. It was an incredible blessing and a memory I'll carry for a long time.

People around the country are "praying for pink", and we remain grateful for the support of so many. Since we haven't provided an adoption update in a week or so, he's a brief update: Our Power of Attorney (POA) in Rwanda is working to obtain our Act of Adoption for each child. Once this document is obtained, our court date will be set (hopefully in the next couple of weeks). Then, we (Shelly, Silas, and I--Josiah will remain in the U.S.) anticipate travelling to Rwanda to pick up the two newest Sneads sometime in January or possibly early February. As you might imagine, things are very busy right now, but also very exciting. Thanks for checking on us!

12/9 Bronch Update

An update regarding Josiah's bronch this morning...s

ome good news, some not-so-good news.

Josiah was especially anxious about his bronch and being put to sleep this morning...we and the medical staff agree he's probably just getting more and more tired of being here and having things done to him.

The bronch was relatively quick. For those of you who don't know, a bronch gives his doctors an opporunity to check on the condition of his airway.

First, the good news. His doctors still think it will be o.k. for Josiah to leave the hospital tomorrow and move to RMH with Shelly and me. RMH is literally across the street from our hospital, and they want us to stay close. His discharge tomorrow will also depend somewhat on how today and tonight go, but we expect to move to RMH tomorrow. For Josiah, it will be a welcome change of scenery, new activities/surroundings/opportunities to play...for us it will mean more consistent rest. Good news all the way around.

The not-so-good news: His airway does not look as good as we were hoping. We've included a photo taken this morning (we have others but this one seems to best show the important issue)...basically, the white tissue on the top and bottom of the picture (in reality, where his anterior and posterior grafts were done in his airway) represent the grafts done during his surgery 2 weeks ago. The pink tissue is mucosa, which is the lining which produces mucous. What we were hoping to see was very little (if any) white tissue, and mostly (or all) pink tissue, which would mean the airway is healing well. However, as you can see, there's still a lot of white tissue. They said this helps explain the breathing issues he had at end of last week, and just means the healing is not progressing as quickly as we'd hoped. Hopefully we haven't grossed anyone out, but we're including the picture to give you an idea of specifically what you can pray for: We want the pink tissue to cover/replace the white tissue!
The doctors also advised us that it's very unlikely Josiah will go home on the 17th as was the original plan. He will have his next bronch on Wed., 12/16 as originally scheduled, but it likely will not be his last before we leave Cincinnati. The doctors said we should expect to continue to be here and have weekly bronchs so they can monitor his airway's healing. Whether that means an extra week or possibly longer remains to be seen...however, at this point it appears likely we'll spend Christmas in Cincinnati. But, as one of his nurses pointed out this morning, Santa Claus visits Cincinnati, too!

We're still processing this news that wasn't quite what we'd hoped and there's some degree of disappointment, but we're o.k. We are excited about moving Josiah to RMH, and we have full confidence in his medical team here at Cincinnati Children's Hospital (may your children never have serious health issues, but if they do it's hard to imagine a better place for them to come than this hospital...it's earned "5 stars" from Snead's Hospital Touring Service). In addition, the longer we are here the more reminders we see of how much for which we have to be thankful, as other families and children face circumstances which appear less hopeful than ours. We're waiting to see how God works out the details for our upcoming travel to Rwanda to pick up our 2 new additions, as it looks like that will occur in January...but He already knows how that will work out.

Thanks for checking, and remember: Think (and pray) Pink!!!

Familiar Faces, Bronch Tomorrow

An eventful day for Josiah (in a good way)...Shelly is already asleep at RMH so I (Art) will try to fill you in before I pull out the chair and try to get some rest.

We had visits from two familiar and friendly faces today. First, Mr. Byron Hill drove up from Nashville last night and visited us this morning. He brought two puzzles (Toy Story and Spiderman) which Josiah loved...he finished the Toy Story one late this morning. We hung out in Josiah's room for a while and then showed him the play room (one of Josiah's favorite places on Earth). Then, Ms. Melanie Calceterra (a friend of Dad's from both high school and college) came to visit. She lives north of Cincinnati with her family now, and she met us for lunch one day during our September trip here. Her kids (who couldn't come due to visitation restrictions at the hospital) sent Josiah several gifts, including a Webkin dog that Josiah named "Snow" and a "Create Your Own Popup Book" set with stickers, markers, and two blank pop-up books...we're planning to save one for Silas since he loves to write books so much. A picture of Byron working the puzzle with Josiah is included...unfortunately, Dad forgot to take the camera and get of picture during Melanie's visit, and Mommy was asleep so she couldn't help us remember. We also learned Josiah has a long way to go with some of his manners...he was so anxious to get back to the playroom that he basically waved goodbye to Melanie for most of 20 minutes...ugh!

On Josiah's 2nd trip to the play room, several members of the Cincinnati hockey team were visiting. We don't think Josiah knows anything about hockey and he certainly didn't know who these guys were, but they thought he was so cute and ended up playing Wii with him for a while.

A nurse came in to take Josiah's temperature just now and reminded me of two funny-but-not-really-so-funny stories we've not shared with most of you yet. We've always been careful with Josiah's health, especially during flu/cold season, but we've been especially vigilant the past few months before his surgery...keeping him away from large groups of kids and sick individuals, lots of hand washing and hand sanitizer, etc. Story 1: The day before his surgery, we were at the Cincinnati Children's Museum (a huge former train station that's an amazing place, if you ever get the chance to go)...I took him in the restroom...usually he stands to the side and waits for me...when I looked over at him this time, he was playing with the urinal mint in the urinal next to me...disgusting, right? Not as bad as: Story 2: When they check vitals, the nurses use a digital thermometer...it has two probes, a blue one and a red one. Each is covered with a hard plastic sleeve that is disposed of after each use. The other day a nurse set it on his bed while she did something else...when I looked over, curious Josiah had pulled one of the probes out and was putting it in his mouth...was it the blue (oral) one? No. Was it the red (non-oral...use your imagination) one that the nurses always say not to touch? Yep. The nurse quickly reminded us they always throw away used plastic sleeves as soon as their used and that they wash the probes...we know, but still disgusting. Moral of this story: Even though we were as wise and careful as possible in protecting him from germs leading up to this surgery, God made sure Josiah stayed healthy, as there's no telling how many disgusting things he's done that we never saw or knew about...after all, he is a 5-year old boy...

Changing to a much more pleasant subject, tomorrow morning is Josiah's next bronch. All along the doctors have said we'll gain much more information from this one than the one last week, as Josiah's airway has had more time to heal. It's at 9:45AM EST and should be pretty quick...the doctors are expecting to see good things, and their hope is to discharge us to RMH on Thursday. Although bronch's are usually outpatient procedures for us, due to only 2 weeks since his surgery and the fact that his issues last week started the night following his bronch, they want to keep him in the hospital under medical supervision for at least 1 more night. Hopefully we'll get to move to RMH on Thursday and stay there until after next bronch on Wednesday, 12/16 (Shelly's birthday, by the way). As for me, my return home originally scheduled for Thursday, 12/11 will likely get postponed to Friday or Saturday.

FYI, Silas flew from FL to Albuquerque today...due to a large snowstorm in Colorado, his Papa B can't pick him up until tomorrow, so he's staying with his Aunt Laura, Uncle Fred, and cousins in ABQ tonight. His Nana said he had a great time in FL but was ready for his next adventure today...what a great kid! We are so happy he's having a great time, but we miss him like crazy...I'm looking forward to our reunion at the ABQ airport early the morning of 12/17 when he and I fly to a family wedding in SC. This is the same day Shelly and Josiah will fly from Cincy back home...we'll all be reunited as a family on 12/22, a full month since our departures on 11/23. We ready to be together again!

We'll update after the bronch tomorrow! Thanks for checking on us and praying for us!

Another great day...and we're thanful

Last night was a great night for Josiah...he actually slept until about 7:30 this morning, which is sleeping in for him (he's been getting up 6 AM-ish). He was moved from PICU back to the airway section, which means he was able to make trips to the play room today. On his trip tonight he got to play Medical Bingo (ex: "N-rubber gloves") and won a cool blue 18-wheel truck (see attached picture).

His bronch will be Wednesday morning as originally planned. Even if it goes great (and they expect it to), the earliest he'll be let out of the hospital is Thursday, especially since it was after the last bronch that he started having some issues...they don't think it was necessarily bronch-related, but they want to keep us under watch that night. They've also advised us to stay at Ronald McDonald house over the next week rather than with some friends since RMH is so much closer to the hospital.

Tomorrow Silas flies from FL to NM where Papa B will pick him up and take him to Colorado for the next week or so. He and I will be reunited early the morning of the 17th when we meet at the ABQ airport to fly to SC for a family wedding...I am looking forward to seeing him so much!

A Big Turnaround (yes, that's a pun with the picture below)

Josiah's turnaround from yesterday at noon until today has been awesome. A great night last night, and a great day today. Although we've not been told anything official, we believe they'll move us out of PICU and back to the airway section of this floor if he has another good night tonight (and we're off to a great start so far). Josiah's attitude was so good today...lot

s of smiles, patience when we told him (multiple times) he couldn't go to the playroom today (not allowed for PICU patients), enjoyed movies, and playing in bed with trains/trucks, ...he is currently in one of his favorite sleeping positions (see included picture): lying on his chest, legs crossed Indian style with his butt sticking straight into the air to greet any medical staff who enter the room...even when he's asleep, he's clearly making his feelings known...

Got a visit from a former player (Melinda R.) today...was great to see her and really appreciated her coming by...nice to see a familiar face! She's in physical therapy school at UK and doing very well.

Hope to find out tomorrow morning that they're moving us out of PICU and whether they'll move up his next bronch or keep scheduled on Wednesday AM as originally planned. We're still hoping to be out of the hospital as early as Wed. (although Josiah and Shelly will have to stay in Cincy area another week) so we can take him to the Christmas lights program at the zoo Wednesday night...that would be an awesome way to spend his 1st night out of the hospital...we'll see!

Please forgive the short update, but it's late! Hopefully Shelly's already asleep, and I hope to drift off soon as well. Thanks for checking on us!

Update

So many of you are following and praying that I (Art) want to give an update before getting some sleep. Last night was somewhat of a contradiction: (1) Josiah actually slept more than he has the past few nights vs. (2) his retracting while sleeping continues to worsen, so he woke up exhausted this morning simply because he had to work so hard to breathe. His doctors continue to be more concerned and are trying to control the symptoms while figuring out exactly what is going on. They are unsure why there is such a large discrepancy between Josiah during the day (no need for monitors, breathes well, etc.) and Josiah and night (who struggles so mightily). Certainly the fact that his airway/muscles relax and "go to mush" when he rests is contributing, but they're wondering if there's more than that. However, in a sense this discrepancy is a good sign, because if his airway were collapsing it's likely he'd be struggling all of the time.

Many of you know his surgeon prescribed 1 round of steroids yesterday morning to "speed up" the shrinking of the nodules in his airway in order to determine if they're the cause of his issues at night. Steroids prevent inflammation, which on the one hand is good; however, healing involves some inflammation, and they prefer not to use steroids because they don't want to slow down the healing of the grafts and the mucosa which covers them. At 1:45AM this morning, the chief resident made the decision to try another round of steroids in light of Josiah's increased breathing struggles. Josiah also took two doses of Adovan (sp?) to help him relax, and twice had to be woken from a deep sleep to receive breathing treatments (he hates these) as the doctors/nurses tried to find ways to help him out.

At 6 AM this morning the ENT team met and decided to do a bedside scope (the camera down his nose procedure with Josiah awake...yes, he hates it, as some of you probably remember from his previous trips to Albuquerque and Cincinnati). There is a good bit of adema (swelling) and the vocal cords are moving somewhat, but they didn't find a clear answer for the issues he's having at night.

They will watch him closely today, although we expect he'll have another great day as long as he's awake. In terms of what could be next: The doctors do not want to put a tube back in his airway if at all possible. There are several other things they can try before we reach that point, but most of them require Josiah going back to the PICU. We'll monitor him closely today and, if his struggles begin again this evening, he will likely be moved back to PICU. In addition, they are considering moving up his next bronch (originally scheduled for Wed., 12/9) so they can try to better figure out what's going on.

Although better sleep for Josiah last night, he continues to get more worn out overall as the breathing struggles accumulate. Thankfully, Shelly got pretty good sleep last night, but we are concerned (trying not to be worried). As each of you parents knows, it's difficult to see one of your children struggle. After his 2nd breathing treatment last night, Josiah looked at me with tears in his eyes and said, "But Daddy, we already did that TWO times tonight" and "Are we going to have to do that EVERY night?" Then, as they prepared to do the bedside scope, he tried to be brave but cried and said "Please don't do this." I know these things need to happen and are best for him, but still it is hard because it is hard for him.

God is good, even in hard times. When I returned to our room at RMH today, I looked at today's note provided by a group of our friends. It's from the Sefziks, family friends who moved to Seattle several months back. One passage stood out in particular in the portion of Psalm 121 they included: "Your Protector will not slumber. Indeed, the Protector of Israel does not slumber or sleep. The Lord protects you; the Lord is a shelter right by your side." Whether we rest or are awake, He watches us more carefully and with greater care than the medical staff who closely monitored Josiah last night, and His love for this boy is even greater than our own (as hard as that is to imagine). As you pray for Josiah today, please ask God to help us remember this truth, even in the hard times...and may you remember it in your hard times as well.

Great pic of Josiah

Another good day today...and thus far, another rough night tonight. Josiah is retracting and we're still trying options to help him not have to work so hard to breathe.

Did want to post this incredible picture of him, though...probably the best so far without his trach.

A speed bump

We're asking for your prayers this morning. Last night was very rough, with several visits from doctors, lots of retracting (heavy heaving in his abdomen when he has to work so hard to breathe), alarms, another IV insertion, etc. Shelly got about 90 minutes of sleep, so she's back at RMH this morning trying to get rest.

Josiah is great when he's awake, so much so that they will allow him to be off the monitor, go to playroom, walk around, etc. But when he tries to sleep/relax (whether a nap or at night), the issues begin. His doctors (and we) are hopeful this is not a result of his airway partially collapsing...

it looked so good 2 days ago when they removed the tube, but it's since that point that he's had problems. They hope the issues are being caused by some inflammed nodules they found on Wednesday which are partially blocking the airway when his muscles relax as he tries to rest. These nodules are supposed to shrink on their own over the next few days, but the doctors have decided to speed that up by giving him steroids. They don't like to give steroids at this point if possible, but feel the risk is outweighed by the need to determine if this is what's causing the problem.

We are concerned but also fully aware that God knows what's going on and is in control. Hopefully the nodules are causing the issues and the steroids will take care of the nodules and not cause other issues. This is the 1st speedbump thus far in his recovery which has gone so well (and for that we are very thankful). The dose of steroids just finished, and we'll see what happens from here. Thank you for your support and prayers!

A day that's run the gamut

A late night at the end of a long day, so I (Art) will likely use this post on CaringBridg

e and SneAdventure:

What a great day. 1st, Josiah's bronch went well and his doctors said the airway is looking very good, so good that they removed the tube from his airway and did not replace it with a smaller tube. So, Josiah's airway is now tubeless. His doctors said the key is making it for 24 hours this way and we're approx. 14 hours of the way there, so things are looking good. However, they also again cautioned us that we are not yet out of the woods, and they'll know much more about how things are looking at the bronch on the 9th.

When Josiah was waking up after the procedure, it was pretty traumatic for him. We think it was mostly due to the new sensation of breathing without a trach and without the tube in his airway...also, it's likely his throat was sore. It took a long time to calm him down. Finally, I started readinng books to him. Then, I asked him what he wanted to do, expecting him to point at something, and he said "Puzzle." Immediately his eyes lit up and he got so excited he began waving his arms and kicking his legs, as he realized he could talk again. The rest of the day he was a different person...lots of talking, eating (Jello, 2 slices of cheese, some ham, some chocolate pudding) under the watchful eye of a feeding specialist, more walking, lots of smiling. I've included a picture of him eating with this post.

About his talking, it is VERY faint, like a whisper although he's not whispering...more difficult to understand him, but I think that's mostly because it's much less volume than before his surgery, but that could be due to sore airway, recent removal of the tube that's been there for a week, etc. We're hoping to hear the volume increase in the days ahead.

I am with him tonight, and thus far it's been pretty rough. Josiah cannot seem to get comfortable, is having to work hard to breathe, is receiving some supplemental oxygen, is crying some, and sounds very congested. They've already done a breathing treatment to open things up and hopefully that will help. This is the most fitful rest I've seen for him since we've been here. If you're still awake and read this tonight (a blessing of us being on the east coast), please pray for his body to calm down so he can get quality rest tonight. Thanks.

We will probably be moved from PICU to a special section for airway patients tomorrow morning. After that, it's more waiting until the bronch next Wednesday.

On the adoption front, we received another photo of the kids today along with some additional health information. The little girl has the most incredible smile in this photo...wish we could post now, but will have to wait until we pass court. Be assured we will share the photos and other information as soon as we can!

Josiah Walking Better Today

Short post today...only got 3 hours of sleep last night and none today, so my brain is fried. Our highlight was Josiah walking on two occasions, and his balance and strength were much better than yesterday. On his 2nd trip, he walked two laps around his pod in the PICU. His nurse worked with the Child Life Specialist to make a trophy for him that says "#1 Walker, Josiah Snead". He loved it!

HUGE NEWS ON THE ADOPTION FRONT

WE RECEIVED OUR REFERRAL!!!

Two days ago we received our approval letter (that was dated in October 09)...typically it takes 2-3 months between receiving approval letter and receiving referrals, but this morning I received an email from the Ministry in Rwanda with our referral info. As I type this entry, I'm looking at pictures of two beautiful children who will hopefully be part of our family very soon. I'll do my best to describe the experience, but there's no way I can describe in full detail the joy we've experienced this morning.

We requested two children, 1 girl and 1 boy or girl. Due to some revisions we had to make on our paperwork, we weren't sure exactly what our referral would be, but we suspected 2 girls. However, we are THRILLED with the girl and boy God is providing for us. We have received very little information so far, just a photo of each and their current names. NOTE: There are still steps in this process that must occur before the adoption is finalized...one important step is that we must "pass court", which is when our in-country legal representative will go to a Rwandan court to try to obtain a court ruling that the children are officially part of our family. Until we pass court, the children are not ours, and in order to protect them we are not allowed to post personal information about them in any public forum, so you won't see photos, official names, etc. appearing in our blog until that happens (which we anticipate will occur in January...but keep in mind that's just a guess, as we continue to learn the timeline can adjust drastically). In the days ahead, we will receive additional information (medical records, birthdates, etc.) for review. From what we can tell, the girl appears to be 3-4 and the boy appears to be 4-5...they are AMAZING!

We showed the photos to Josiah this morning, and he flashed a thumbs up and was excited. Then we emailed them to Nana and called Silas to give him the great news as he opened the email and saw the photos...he is so pumped up.

So much going on in our lives right now...and so much good for which we are thankful!

A Very Cool Moment

Today was mostly another looooong day in the hospital. On several occasions Josiah's tolerance level for being stuck in bed reached a point where he was miserable and didn't really want to do anything to make himself feel better. However, there were also some cool moments:

1.) To spice up his wagon rides today, Shelly created a scavenger hunt for him. She taped 6 envelopes along the PICU corridor walls with his name on them. As we rolled him around, he had to watch for the envelopes and find them. When he did, we'd open them and read a card/note to him, and there was a small prize (crayons, lollypop, puzzle, etc.) in each. He enjoyed it and Shelly is already planning something more elaborate for tomorrow.

2.) Tonight after dinner I asked Josiah if he wanted to do a puzzle...previously he's said no but this time his eyes lit up somewhat and he nodded yes. Using a hospital rolling table arranged over his bed, we opened a 100-piece puzzle and began to work. I could see his mind working as he positioned the pieces, and he flashed repeated thumbs up as we worked together and made progress. I've included a picture of him working the puzzle.

3.) Probably the coolest moment happened tonight when we held up a mirror so he could see his neck without a trach for the first time. He stared at the mirror for a few seconds, then shot his arm up in the air with a big thumbs up. I think it was a strange sight for him, but one that he's excited about. I've also included a picture Shelly took while this was happening.

Josiah is getting better at communicating with us (or maybe we're just getting better at understanding). As you probably know, he can't say anything due to the tube through his nose that goes down through his vocal chords. The sign language he learned several years ago (a necessity because he couldn't talk at all then) has come in very handy, and he's also developed a system of pointing, thumbs up, etc. to help us know what he needs. For several days we've noticed occasions when he fidgets and rubs his legs together...usually happens at night and keeps him awake. We've previously asked him if his legs hurt, and he shook his head (no). About 4:15AM this morning I thought to ask if his legs itched, and he nodded yes. I sat beside him and rubbed my hands up and down his legs, and within 3 minutes he was fast asleep. His nurse brought us some lotion, and we've applied it several times today to his legs...it has helped his comfort level a great deal. We later found out that some of his medicine is probably drying out his skin.

Before closing, here's a specific prayer request...it is very important that the tube in Josiah's nose remain in place until it's time for them to take it out. He has done a great job leaving it alone...however, at night when he's back on the vent (and the tube is connected to other tubing) and he moves, it starts to pull on his nose tube. Last night there were 3-4 times the respiratory therapist had to push it back in...Josiah does not enjoy this at all. At one point she even wondered if we needed to re-tape and re-position it, which would require him being sedated and paralyzed while they do it so that he doesn't move at all. In the end, she ended up adding a single piece of tape to help stabilize it. It's done very well today, but please pray that the nose tube stays stable tonight while he sleeps (and wiggles). Only three more days until his bronch on Wednesday, and if all is well at that point they'll downsize to a smaller tube.

Pics of Silas in FL

As you can see, Silas is having a great time with his FL cousins...

More progress for Josiah...and big news on the adoption front!

Josiah continues to make progress. He no longer has a bandage on his neck, he is completely off of oxygen, and the drain tube from his neck was removed this morning. On the flip side, he's getting more and more fidgety and it's getting more difficult to keep him entertained.

Today was filled with more books, movies, listening to Silas read a book over the phone, listening to Aunt Chabba read a book over the phone, listening for a 2nd time to a story recorded by Glorieta intern Mindy, watching Dad put together two Lego Christmas ornaments, 2 wagon rides, computer games, ...and it was still a challenge. He was more grumpy today and showed even more frustration/fear than usual when medical staff had to do things with him. Without a doubt, his least favorite thing is being suctioned through his nose tube. Second least favorite thing is probably having new IVs installed, although he actually did pretty well with the one tonight. Although there are fewer tubes attached to him than at one time, the IV sites must periodically be changed.

Shelly and I continue to tag-team our time with him (particularly the nights), although all 3 of us are frequently in the room during the day. Typically whoever stays overnight with him doesn't get much sleep, and then returns to the RMH for a nap the next morning. We are both getting to exercise each day, which helps relieve stress and gives us an opportunity to get out of the hospital.

Summary: We continue to make progress, pray that the grafts will work, and look forward to his bronch on Wednesday and possible down-sizing of his nose tube at that point.

Probably the best news of the day: We received an email from our Power of Attorney in Rwanda with an attachment of our letter of approval from the Rwanda Ministry! This was the next step for which we were waiting in the adoption process, and now we'll be waiting for the actual referrals. Timeline for others ahead has typically been 1-3 months to receive the referral...not sure when it will happen for us, but we're sure looking forward to it!

Thanks for checking in on us and your continued prayer support!

Post-Op Day 2

Josiah continues to improve today. Last night he slept until about 3:45 AM and was then wide awake as the medical staff worked with him. He is fully off the vent now, just receiving a small amount of humidified oxygen. He foot IV is gone (still has one in his hand), his catheter is gone (didn't watch that removal), the drain tube in his side is gone (the one in his neck will likely be removed tomorrow),...all of these are good signs of his recovery. He certainly isn't acting normal yet, but we see glimpses of his personality emerging. No smiles (we think it hurts him), but he's actually reverted to the sign language he learned years ago before he could talk in order to communicate with us. He's eaten some crushed ice, taken two rides today around the PICU in a wagon (see attached pic), quacked at a nurse when she showed him her toy duck, given thumbs up several times,...he's getting there. Still in some pain and discomfort...has just now (5PM) drifted off for a little nap after having been awake since 3:45AM this morning.

Josiah with Eyes Open

Shelly took this photo tonight while Mamoo read a book over the cell phone to Josiah...he's drifting off to sleep now and will hopefully get great rest tonight!

Happy Thanksgiving

Hoping that all of you who read this have enjoyed a wonderful Thanksgiving with family and friends. Although we're spending Thanksgiving in the hospital, we have much for which to be thankful.

Josiah has been awake much of the day. He usually cries when a staff member enters the room, and always shakes his head no when asked if he needs medicine. His attending doc today said that he probably is in pain, but just doesn't want anyone coming near him, so they're giving him Tylenol every 4 hours. We've read lots of books and he's watched two movies, mainly trying to keep him comfortable and peaceful.

Good news - he is breathing so well on his own that they are slowly taking him off of the ventilator. The large tube must stay in his nose to keep the airway open and to be there in case it collapses, so they don't have to intubate through the airway sites they just repaired. They have turned him down to 24% (I think 21% oxygen is considered "room air"), and he stil has something going on with the ventilator that provides a push to open his lungs. They will slowly wean him off of this and if he can tolerate it, this will allow him to be able to sit up more, etc. (although right now he gets upset if we even have to adjust his pillows to change his position every few hours).

He continues to be a real trooper. While in obvious discomfort and somewhat frustrated because he can't speak, he is remaining calm, compliant and controlled. He just gave me a quick 1st smile of the day, but other than that he's just looking around most of the time. His level of calm is great because the more upset he gets over things, the more movement and the more possibility of jarring something in his airway that is still healing. We have even removed the restraint from his right hand, and so far he hasn't touched his tube.

Palomino, an upscale restaurant in Cincinnati, catered Thanksgiving lunch in two seatings at RMH today. Shelly attended noon and I attended 2 PM. Very good food and so kind of these folks to volunteer not only the food but also the time away from their families for part of today. The hospital itself is like a ghost town today, but the staff that are serving are cheerful and so professional. I remarked to someone yesterday that our interaction with Cincinnati Children's Hospital on the Sept. trip and now is probably the best customer service experience I've had in a long, long time. The hospital's motto is "Change the Outcome"...what an awesome mission.

Josiah is now again napping, which is great for him...his little body is so worn out. In closing, I want to share another Josiah story from this morning. Josiah hasn't seen a picture of himself without the trach and his neck is still bandaged, so this morning I wondered if he realizes the trach is gone. I asked him, "Josiah, do you know that your trach is gone and that you're breathing thru your mouth and nose just like Silas does?" He looked somewhat surprised and shook his head "No." I replied, "That's pretty cool, isn't it?", and he nodded yes. I'm sure it will be an even bigger deal to him when he feels better, which should continue to happen over the days ahead.

Hope you've had as great a Thanksgiving as we have!

A Great Day

Josiah did great today. We could tell from the moment we woke him that he was a bit anxious about the surgery, but he really handled it all very well. It lasted approximately 4 hours, and now we are in a PICU room for the next week for his recovery. His neck and right side (where they took the rib) are bandaged, but it's still an amazing site to see him without his trach. The doctors said "It went as well as it could've gone", but they also cautiously reminded us that 1 in 30 patients who have this surgery must be re-trached because the grafts don't "take" (ie., no blood circulation, etc.). We should have a good idea of the probability of success for Josiah in 2 weeks when he has his 2nd of two scheduled bronchoscopies. So, Josiah's recovery the next few weeks is as important as his surgery was today. The plan is to wake him in the next day or two and see if we can keep him calm as he recovers over the next week. There are benefits to him being conscious during his recovery, but there's also a risk with kids of his age that agitation could cause movement that will harm the grafts put in today. As God brings us to your minds, please pray for peace and patience for all three of us (Josiah, Shelly, and Art) in the weeks ahead.

As for Josiah, he's worn out as you can imagine. Throughout the afternoon he's floated in and out of consciousness...it started with him barely opening his eyes every 30 minutes or so and mouthing "Ow" (he can't talk because the tube in his nose goes down thru his vocal chords). Now when he opens his still-droopy eyes he seems more alert, and he'll try to nod or shake his head to answer some of our questions. So far we’ve been able to pacify him back to sleep, but tomorrow will most likely be a lot rougher on him once all of the anesthesia wears off. I've included a picture of him from this afternoon post-surgery so you can get an idea of how he looks.

Two Josiah stories I'll share before closing:

We're always careful with his health (especially during winter), but have been even more vigilant over the past 2 months, limiting his exposure to sick people, constantly applying sanitizer to his hands, etc. Yesterday while in the Cincinnati Children's Museum he and I went to the men's room. I looked over and saw him playing with the mint in the urinal...yep, the day before his surgery. Just more evidence that despite our best efforts, it was God who kept Josiah (and the rest of our family) illness-free in preparation for today.

The 2nd story involves Josiah's actions this morning as the doctors and nurses prepared him for surgery. He began to cry, kept saying "I don't want to do this", and even put his hands over his trach so they couldn't have access to it. Although trying to be brave, he was afraid, and his reaction was to clutch and protect the target of the doctors' efforts to help him. Whether due to fear, confusion, or a combination of the two, he clung to what was familiar even though the best course of action was to just let it go and move forward with the experts' plans for him. While trying to calm him down, I briefly wondered how often I postpone or miss out on God's best for me because I'm clinging to what is familiar but no longer part of His plan. I'm so thankful for His constant patience with me!

On the Eve

Great day with Josiah today. We went to the hospital for a short visit and lunch, and then headed to Cincinnati Children's Museum (free tix and free shuttle provided by the hospital). We'd considered the zoo but we went there on our trip in Sept. and it was a bit rainy today. A huge, old train station houses several museums (Natural History, Children's Museum, etc.) here...was neat to see how this structure has been transformed from a busy transportation hub many years ago to a museum today. We had a great time with Josiah, and he enjoyed the water activities exhibit, an exhibit called Energy in Motion, and, of course, the Thomas the Tank Engine play table they had.

Tonight we had dinner and now he's in bed. We're hoping to all get a good night's rest, as tomorrow will be a long (although good) day and the last 2 nights have been rough...short sleep 2 nights ago as we had to leave so early for the airport, and last night none of us got much good sleep because Josiah was congested (so lots of suctioning, patting his back, getting him back to sleep, alarms, etc.). The great news is that he doesn't seem to be getting sick, so we're not sure what happened last night.

We also received a schedule for tomorrow...all times are Eastern. We'll arrive at hospital at 7:15AM, surgery is at 9:15 AM and scheduled for 5 hours. During the surgery, Shelly will probably knit and I'll probably work/read in between all the praying and waiting. We're not sure what will unfold after the surgery (how quickly they'll wake him up, if one of us can stay in his ICU room with him, etc.), although we do expect him to be in some pain/discomfort. We'll try to provide updates when we can.

We're in Cincinnati

For those of you that keep up with www.sneadventure.blogspot.com (our relatively new family blog) and www.caringbridge.org/visit/josiahsnead (Josiah's current CaringBridge site), it's likely Shelly will keep CaringBridge updated and I (Art) will keep the blog updated while we're here, so there will often be different information on both. However, there will also likely be occasions when we simply copy one to the other. As it's been a long day and it's late, tonight is one of those occasions. By the way, if you're a glutton for punishment (or just want to learn more details about Josiah's health issues leading to this point), you can check out his original CaringBridge site at http://www.caringbridge.org/nc/josiahclete/...this one was started when he was still in the NICU after birth 5 years ago and was his primary site before we migrated to the new CaringBridge format a year or so ago.

We left Glorieta at 5 AM this morning for the ABQ airport. Silas flew to Florida with his Nana (and is having a blast with his FL cousins already), while the rest of us headed to Cincinnati (via Atlanta). Something unexpected and cool: One of our church's staff members (Kari Reeves, Director of Christian Spirituality and Art) was on our 1st flight, and she prayed for Josiah once we reached ATL. Also during our layover, we received a call from the Cincinnati Ronald McDonald House. They informed us a room had opened up for us to use...this is a great blessing because the hotel where we were booked was approximately 10 minutes away, whereas the RMH is right across the street from Cincinnati Children's Hospital. Also, the RMH has a library, activity rooms, other children and families to meet, and a great dinner prepared and served each night by community volunteers...truly an awesome ministry to families of children with serious health issues. We previously stayed in the one in Chapel Hill, NC, when Josiah was born, but he doesn't remember that. This one is huge...supposedly the 4th larges of all RMHs with 78 rooms. It's pretty much full but it's so big it doesn't seem crowded. After settling in and getting some equipment exchanged (there was some confusion with our equipment order), we enjoyed homemade tacos. Then Josiah and I headed to the library to read a myriad of books. Now he and Shelly are asleep while I'm getting some work done.

Josiah's surgery is not until Wednesday...we traveled 2 days early because winter weather has begun and it's Thanksgiving travel week, and we didn't want to take a chance we'd get delayed and not be in Cincinnati by Wednesday morning. Tomorrow we'll likely drop by the hospital for a brief visit, and then possibly head to the zoo to enjoy some time outside before several weeks of inside confinement for the Toaster. If weather isn't good, we'll possibly do a museum instead. Although we understand what the surgery will entail and accomplish, we're still a bit in the dark on details. It should last 5 hours, but we don't know if they'll wake him up afterward or wait a couple days. He will spend 1 week in ICU and will likely be sore (both in his airway and his side, due to the rib cartilage they'll use in reconstructing his airway), so we'll be reading books, doing puzzles, watching videos,...anything we can do to ease his discomfort and keep him from fidgeting and damaging what the surgeon's have accomplished...will be tough for a 5-year old boy, so please pray for patience and peace (for Josiah and us!).

We know there are many who have prayed over the past five years for this day, and many who will be praying on Wednesday and the upcoming weeks of recovery. We treasure your prayers, not simply because it means you're thinking of us, but because you are communicating with Almighty God on our son's behalf. Yesterday the Glorieta community had a special prayer time for our family at a Thanksgiving celebration on our campus. They also presented us with 3 identical packages of notes (1 for Shelly/Josiah, 1 for me, and 1 for Silas), so our family could each read the same scripture and words of encouragement even while we're at times separated during the next few weeks. One note for each day, each contributed by various members of the Glorieta community...we read our 1st from Mary Kay while on the plane today (Josiah actually remembered and asked about it). Such support means a great deal. One additional item I'll mention: Josiah loves it when people sign the Guestbook on his CaringBridge site or post comments to him on our blog...during our last trip to Cincinnati, we read them to him at least daily while in the hospital, and we plan to do the same again this time. If you get a chance, write something for him on one of these sites and we'll make sure he gets it.

Shelly and me? We're excited. Although there's much about Wednesday's experience we can't predict, we're looking forward to it with great anticipation. This day has been so far off for so long, and we've been so busy preparing for it the past few weeks, the impact of it hasn't hit us yet. I think at some point on Wednesday the emotion is going to overwhelm us as we get squarely reminded of what God has accomplished in Josiah's life over the past 5 years, and what He's going to accomplish that day. I'm not fully prepared for it, but I'm ready for it to happen.

Ready to Go To Cincy

Below is the post Shelly put on www.caringbridge.org/visit/josiahsnead earlier today...we'll try to keep both that site and this blog updated while we're gone, and will likely sometimes copy one entry from another:

We're off to see the "wizard(s)"!..............

We'll be leaving early tomorrow morning to catch our plane to Cinncinati, Ohio for Josiah's airway reconstruction! YIPEE!!!!!!

His procedures are as follows: this Wed., Nov. 25 (probably starting around 9:00am). This is the official surgery which is estimated to take around 5 hours. He will most likely be sedated for a time afterward (a day or 2....we're not really sure) and on a ventilator. Josiah doesn't really have a clue who rough the next couple of weeks are going to be....so pray for his recovery and emotions as well.

Then he'll be in ICU until Dec. 2, when they'll do a scope/bronchoscopy (while he's under anesthesia) to check things out. If everything goes well, he'll then be put in a regular peds room in the hospital, with another follow-up scope on Dec. 9. Finally, he'll be released from the hospital where we'll stay with some friends for the following week until his last bronch on Dec. 16. If everything is in order, we'll come home on Dec. 17.

Shelly's mom flew in last night and will be flying Silas to Florida where he will spend to incredible weeks with her, and all his cousins, uncles and aunt on my side of the family...Nana will then fly him to his other grandmother's where he'll have another incredible week at the "Butler Farm" and spend time with Papa B, Mamoo and other friends and family.

Lastly, Art and Silas will fly to South Carolina for cousin Corrie's wedding, along with a tirp to see Grandpapa and Grandma Linda. As you can see, Silas is DEFINITELY going to have an amazing holiday season, for which we are VERY thankful. (I asked him yesterday how much he was going to think about me, and he answered very kindly but honestly, "well, probably not much because I'll be pretty busy".....but that, too is a blessing, isn't it?

Well, we sure appreciate your thoughts prayers and journal entries (we read them all to Josiah and he appreciates them too!) We'll try to update pretty regularly starting Wednesday evening......Its all in His good hands...

Sara Groves Rwanda Video

If you haven't seen this yet, it's worth watching...powerful images and song by Christian artist Sara Groves, who wrote this after returning from a journey to Rwanda. Looking forward to the day when we reach the Land of A Thousand Hills on our journey to Rwanda and see the faces of our girls...

Referral Day for Several Adoptive Families

When I checked my email this morning, I saw something I've been looking for the past few weeks: Referrals began coming in from Rwanda for a group of adoptive families. I can only imagine the incredible joy those families are experiencing as they look at the pictures of the Rwandan children who will soon become part of their families. I am happy for them, and I'm also eager for the day that we receive our referrals. To put names and faces with "our little sisters in Rwanda", which is how we typically refer to the girls when we're praying for them, talking about them while seated at our dinner table, or when Silas and Josiah go into "our little sisters' room" to play...that will be amazing.

In the meantime we continue to learn all we can about the wonderful country of Rwanda via books, films, blogs, people who've visited...we've even downloaded mp3 files to help us better learn the Kinyarwandan language (still have a ways to go in this area, but I'm trying). It's amazing what God is doing in this small but special African country...for just a glimpse, check out the documentary "As We Forgive" and/or the book of the same name (both, by the way, written/created by Furman University alums...go Paladins!).

In the meantime, only 2 weeks until Josiah's surgery! We're doing what we can to keep him free from sickness while still allowing him to be a 5-year old boy...his birthday party last Saturday was a lot of fun. Tonight as we prepared to change his trach (typically a weekly event), Shelly told him this was one of the last trach changes he'd ever have...I honestly hadn't thought of it in those terms before. While hosting the interns for dinner last night, we showed them pictures of Josiah as a baby and a diaper like the ones he wore in the NICU (it's tiny, but it used to swallow him)...how far he has come, and how faithful God has shown Himself to be along the way. Only 2 more weeks!

23 days and counting, Adoption Update

23 days until Josiah's surgery, and only 21 days until we leave for Cincinnati. We originally planned to travel to Cincy the day before the surgery, but due to potential winter weather and Thanksgiving week, we'll travel on Monday to give ourselves an extra day to get to Cincy on time...don't want to take the chance of not being in Cincy the morning of the 25th!

Participated in another conference call for Rwanda adoption families last Thursday...as eager as we are to get further in this process (which for us means receiving a letter of non-objection from the Ministry), there are several families who are waiting to receive referral information on the children who will be joining their families...that's got to be exciting but tough at the same time, especially since the 2-month deadline originally given to them has passed.

Summary of info from the call:

1.) Whereas we'd previously been told to expect a wait of 3-6 months between the time our dossier arrived in Rwanda (DTR = Dossier to Rwanda) and receipt of non-objection (ie., approval) letter, it now looks like at least 5 months. Also, the Rwanda program coordinator repeatedly emphasized that timelines/deadlines are treated much differently in Africa than in America...whereas we tend to look at them as set in stone, in African culture they're viewed in a much "looser" manner...reminds me of the following exchange in "Pirates of the Caribbean":

ELIZABETH: Wait! You must return me to shore! According to the rules of the Order of the Brethen --

BARBOSSA: First. Your return to shore was not part of our negotiations nor our agreement, and so I 'must' do nothing. Secondly: you must be a pirate for the pirate's code to apply. And you're not. And thirdly ... the code is more what you'd call guidelines than actual rules. Welcome aboard the Black Pearl, Miss Turner.

Yes, that was a bit random, but hopefully you see the connection...in international adoption, "deadlines" are "more what you'd call guidelines than actual rules."

2.) It's likely the adoption process will continue to slow down before it speeds up again. The increased delays are mostly a result of:
a.) Lack of manpower (only 1 individual in the Ministry currently tasked with most international adoption matters)
b.) Technical issues (sending/receiving a fax and scanning documents not as commonplace as in America)
c.) Rwandan Ministry's recent (within the last few months) decision to take a greater role in the referral process
d.) Increased number of families wishing to adopt from Rwanda...our agency is actually limiting the number of dossiers it sends to Rwanda in order to avoid overloading a system which is not yet ready to handle a large number of adoptions.

3.) In spite of the fact that this Rwanda adoption process is slowing down, adoption from Rwanda is still quicker than most other countries.

So, whereas we were originally hoping (back when we started in October 2008) to receive our children by Christmas 2009, and during the past few months we were hoping to travel to Rwanda in February-ish, it now seems more likely we will travel late spring/early summer 2010.

They're likely behind these doors

Was surfing several blogs from families adopting from Rwanda tonight (o.k., the term most people use is "blog-stalking") and came across the following picture. These are the doors to the Home of Hope Orphanage in Kigali, Rwanda. This is the orphanage the Ministry has been using (and is expected to continue to use) when referring children for adoption. Since our dossier is in Rwanda awaiting approval, it's quite likely that our two girls are currently living behind these doors. Wow...that hit me like a load of bricks tonight. As excited (and blessed) as we are about Josiah's upcoming surgery, we're still longing for the day our family expands by two precious girls from Rwanda. Although our family has each other, this longing can still feel lonely sometimes and reminds me of the following words from a David Wilcox song: "When I get lonely...that's only a sign...some room is empty...that room is bare by design...when I feel hollow...that's just my proof that there's more....for me to follow...that's what the lonely is for." The longing that we feel is often placed in our hearts as a gift from the Lord...while it's not really a pleasant feeling, it reminds us there's something else out there...I think John Eldredge once wrote (here's my paraphrase) that our disappointments and frustrations with this world remind and point us to the fact that we're made for something better, something that is yet to come. So it's currently a struggle between impatience with and thankfulness for the longing.

Missing the family

Shelly and the boys went to visit Mamoo and Papa B in Colorado yesterday, and they won't return until Tuesday. I wish I could've joined them, but we're hosting the Baptist State Convention of New Mexico starting Monday, and I needed to be around for this event. It was strange attending church without them this morning, and I fielded lots of "Where is your family?" inquiries while there.
However, I did get some shopping done...not something I typically do much of, but I bought a king-size electric blanket for our bed (Shelly is excited) as well as Josiah's birthday present...got to keep the latter a secret, but it's something the entire family is going to enjoy and hopefully something he can take to Cincinnati to help pass the time while he's in the hospital. His birthday is November 7th.
I know my family is having a great time but I sure do miss them. Am trying to get a lot done while they're gone!

Countdown to November 25th

We have a date for Josiah's surgery: November 25th! Not only is this 1 month before Christmas, it's also the day before Thanksgiving...we'll have so much to be thankful for! Shelly, Josiah and I will travel to Cincinnati and stay for several weeks (depending on how typical Josiah's recovery is). The Toaster (Josiah's nickname) has been telling everyone he's getting his trach out...we're all very excited!

There's a chance we could get bumped up if a cancellation occurs, so we're living life on "standby" in case that happens. We're praying our family (especially Josiah) stays healthy between now and his surgery so we're not postponed. Flu season is certainly impacting our area, and we're trying to be careful with him while still letting him live a 5-year old's life. That's right, Josiah will turn 5 on November 7th. He's come so far in the past 5 years and we're so blessed he's in our family!

2nd grade is going well for Silas. He's becoming a great reader...I'm amazed at how smooth and quickly he reads out loud, and he loves to sit by himself on the couch and read chapter books. He's continued to do great in soccer (only 2 more games).

Shelly and the boys head to Mamoo and Papa B's home in Colorado tomorrow for a few days away. They'll check on all the chickens and yaks, and bring home the packaged half-steer so we can enjoy some great beef over the months ahead.

The next Rwanda adoption conference call is next Thursday (the 29th). All that's going on with Josiah has made the adoption waiting a little bit easier, but there are still so many times we as a family talk and wonder about the 2 sisters who'll be joining us (hopefully soon)!

The cold weather has arrived at Glorieta! After a beautiful fall with vibrantly colored leaves of many colors, the cold weather hit Wednesday with our 1st snowfall of the year. It didn't stick, but we can still see quite a bit on some of the mountaintops in our area.

Cleared by Children's Hospital

Last Friday Josiah had an ECG in Albuquerque. On Monday we received word the results looked "normal", although the medical team in Cincinnati would have to review and interpret the results when they met on Wednesday. Yesterday Shelly worked relentlessly to make sure the team in Cincinnati received the ECG report in time to review it today. We also received a copy, which stated "other than some dilation of the PA system, no other signs of PAH."

Today we prayed for wisdom for the Cincinnati team as they reviewed Josiah's case. Although we did not expect to hear from them until tomorrow or Friday, we received a phone call today from Dr. Cotin's nurse, Janet. She is the individual who told us last week that Josiah wasn't yet ready to be scheduled for surgery because the PAH issue needed to be investigated. Her news today was great. The Cincy team feels very good about the ECG results, and they have sent our file to the scheduling department, meaning we'll be able to proceed with his airway reconstruction and trach removal.

We're still not sure why things were put on hold last week, but we're very grateful all issues have been investigated and we've been cleared to proceed. Janet told us to contact the scheduling dept. by Friday and check to see where they are. It took several months to schedule our 1st trip to Cincy, but we're hoping things will go much more quickly this time since they've already dealt with our insurance company once (also, we think it's a good sign that they initially told us to come so quickly last week). Shelly made sure Janet knows we're very flexible in making a trip to Cincinnati at a moment's notice in case they have any more cancellations. Janet replied they've had several cancellations (this is what happened last week when they initially called us to come) due to flu season. We're not hoping anyone else gets sick, but we'd certainly like to go as soon as possible!

Speaking of the flu, I read on an adoption blog today that the Minister and her family (in Rwanda) have the swine flu, which is slowing down the adoption process for multiple families at this time. Hopefully she and her family will recover fully and quickly.

Change in Plans

This morning we received a schedule from Children's Hospital listing the procedures Josiah would have over the next 3 weeks. Later, we received a phone call from Dr. Cotin's nurse...when she heard we'd been contacted by someone from Children's Hospital to schedule the surgery on Monday, she was shocked and basically said that no one should've contacted us. For several hours we waited while she discussed with other doctors (Dr. Cotin wasn't in today), and then she called back with the news that they are not ready to proceed with Josiah's surgery at this point. Apparently there was some confusion between departments there and we shouldn't have been called to arrange an appointment yet.

Here's an explanation that Shelly wrote on www.caringbridge.org/visit/josiahsnead:
"WE ARE NOT GOING TO OHIO THIS WEEK. And I am officially OFF the roller coaster ride! We're not exactly sure why the surgeon and his scheduler jumped the gun, but the other people on Josiah's team would like to get rid on one "red flag" before prodeeding with surgery.The red flag was this: Hemosiderins were found in the washes done by the pulmonologist during the bronchoscopy last week. This could be a normal thing, as 50% of preemies have these. BUT, in light of Josiah's oxygen requirements, they want to make sure it's not signs of pulmonary hypertension (caused by possible hemmoraging in the lungs). The O2 needs could very well be explained by altitude, but its better to get everything checked out and treated BEFORE this major surgery occurs. " We're still not perfectly clear on what this means, and I think the pulmonary hypertension could cause possible hemorrhaging in the lungs (not vice-versa), so we're again waiting. Josiah will have an echocardiogram (ECG) on Friday morning in Albuquerque and the results will be sent to Cincinnati. Janet, Dr. Cotin's nurse, thinks it will be normal and said they'll then be able to schedule us...if it's not, it's an issue that will have to be resolved before they do Josiah's surgery, as we don't want to risk the hemorrhaging. When Shelly asked what it would take to resolve the issue if it exists, Janet didn't provide a direct answer, so we're not sure.

So now we're praying for a normal ECG on Friday, continued wisdom for his doctors and nurses, and genuine trust in God's timing. Several friends have commented along the lines of "God's timing is perfect" after hearing the news today...it's one thing to hear it, say it myself, and even know that it's true...but sometimes it's a much more difficult thing to BELIEVE it. Not sure if that makes sense or suggests a lack of faith, it's just sometimes a struggle (at least for me) to LIVE it. However, my struggle in that area doesn't change God's faithfulness, and that's comforting. Pastor Martin actually spoke last Sunday about how Abram was a friend of God and yet even he expressed doubts when God told him he would be the father of many nations (and how that would take place). One of his points was that we can be honest with God when it comes to doubts, frustrations, etc. He made us, knows us, and loves us, so it wouldn't make sense to do otherwise. I just thought of that sermon now as I'm writing this...I wish I'd remembered it earlier today, but at least it's an unexpected blessing from writing this blog (which I really didn't feel like doing tonight).

One cool thing about today: So many of you expressed your excitement and joy for us based on last night's news, and we appreciate you sharing in our excitement and joy. We all got a glimpse of what it will be like, and that was pretty amazing.

GREAT NEWS!

Well, those of you who have visited Josiah's Caring Bridge site (www.caringbridge.org/visit/josiahsnead) or my Facebook page tonight are already aware, but I had to try to put it into words on our blog tonight:

JOSIAH GETS HIS TRACH OUT ON MONDAY! Shelly received a call from Cincinnati today and was told Dr. Cotin (who invented the airway reconstructive surgery he will perform on Josiah) wants to know if we can be there on Monday (as in October 12, as in 6 days from today) for the surgery. I was in a meeting at work, but Shelly called and said she had to speak with me right away. Her sense of urgency caused concern among the individuals trying to find me, and when I called I heard her crying on the phone. Then she told me the news and I was stunned, absolutely overwhelmed. That's how I can best describe what our family is feeling tonight: we are overwhelmed in an exceedingly positive way, acutely aware of how blessed we are. This is amazing! Tonight we went to dinner at Red Lobster (Josiah's favorite non-fast-food restaurant, even though he goes for the mac-n-cheese and broccoli rather than the seafood), and several times I caught myself just staring at him, thinking that one week from today he will no longer have his trach, and listening to Silas repeatedly say how excited he is for Josiah.

I hate that I was not home when Shelly got the news...when she got off the phone she told Silas "Your brother is getting his trach out on Monday!" She said Silas got so excited he began crying tears of joy, said "This is what we've been praying for!", and ran around the house for 45 minutes (she finally sent him outside to get some exercise). As some of you know, at least 95% of the times Silas has prayed during the past 4 1/2 years (whether before meals, or at night before bed, or during the day), he asks God to help his brother get his trach out...there have been numerous times Shelly and I have been convicted that we've lacked the consistency in petitioning God for this request that our 7-year old son has had. I wish I could've seen the joy in his face and heard him say "This is what we've been praying for!" when he first heard the news today. Just another example of the huge heart Silas has for others and a glimpse of how his faith is growing.

As for Josiah, Shelly said he initially cried when he heard "surgery" but then Silas said "Josiah, when you get your trach out you'll be able to go swimming with me!" and then Josiah started getting excited about it all. Several times over the past year Josiah has said he doesn't want to get his trach out...we think it's because the only time his trach is out is when we're changing it, and he struggles to breathe during those times which is scary for him. However, he's continued to grow more excited about all the things he'll be able to do when he gets his trach out, from swimming to spending the night at people's houses to no more suctioning and trach changes, etc.

So here's the plan: Our insurance company is already working on travel and hotel plans for Shelly and Josiah. With the surgery on Monday, we don't yet know if we'll travel on Saturday or Sunday (perhaps they'll have to see him for pre-op on Sunday?), but as soon as we find out I will try to get a flight as well. The 1st week he'll be in ICU, and the 2nd week he'll be in a regular hospital room. The 3rd week they'll likely release him from the hospital but he'll have to stay in the Cincinnati area. If his recovery is "typical" (keep in mind that Josiah has never been "typical"), he'll then be able to come home for 2-4 weeks before returning to Cincinnati for a followup checkup. After that, he'll continue to return for followups, with the time between each subsequent visit generally doubling. During the two weeks Josiah is in the hospital, we'll likely stay in a downtown hotel or the Ronald McDonald house so we can be close to him. During week 3, we'll likely stay with a family in Cincinnati.

So many of you have prayed for this event, and now it appears it is almost here...please continue to pray for us as we make plans (travel plans, plans for Silas, etc.), travel, Josiah undergoes surgery and recovery, etc. Thank you!

Back Home

We're back home in NM after returning late last night. Shelly and Josiah met Mamoo this morning to pick up Silas and Eli, so we're all back together tonight.

The final day in Cincinnati went well. Josiah and Shelly stayed in the hospital Wednesday night while Josiah had an impedence probe (a tube with multiple ph probes) down his nose to his stomach while being hooked up to a monitor that collected data and looked for reflux. On Thursday morning, the tube was removed and we headed back to otalaryngology for the final procedure of our stay, another scope down Josiah's nose and throat. This was the same procedure he's struggled with before, except this time he had to eat and swallow, not just talk. HE PERFORMED LIKE A CHAMP! Perhaps it was a matter of getting used to the procedure, or knowing this was his final procedure before going home, or a result of so many of you who were praying...but he did great. A little fussy at the beginning, but then he followed directions, ate and swallowed, and kept calm. When it was over, he jumped up and down on the floor in excitement!

His medical team in Cincinnati is still waiting for the results of a few tests and will meet next week to discuss where we go from here. However, unless unexpected red flags pop up, they believe we'll be moving toward airway reconstructive surgery and trach removal in the next few months.

After leaving the hospital, we met a friend of Art's from high school and college for lunch and then headed to the airport, arriving back home after 11 PM MST (after 1 AM EST). Our bodies are still somewhat mixed up as to what time it is, but hopefully we'll get good rest this weekend.

On the adoption front, there was another conference call for families adopting from Rwanda last week. We actually missed it because of Josiah's appointments, but I did listen to a recording and there wasn't any really new information. We're still in a waiting period while our paperwork is reviewed by the Ministry in Rwanda.

Cincinnati Update #4

Here's an update Shelly wrote for Josiah's Caring Bridge website late today. If you haven't visited the site, check it out at
www.caringbridge.org/visit/josiahsnead
It's got lots of great pictures (including some from our Cincinnati trip) as well as a place you can write Josiah messages!

Here's Shelly's update from today...it has some GREAT NEWS in it:

WOW! What a whirlwind this week has been! We flew in on Sunday, and drove to West Chester to stay with our wonderful new friends, Rick and Sharon Schatz, who hosted us (and all of Josiah's equipment!) for our stay here. Thank you thank you thank you! (and thanks, Scooter, for the connection).

Monday was a pretty easy day - we spent the morning at a place called "EnterTRAINment", an enormous hit with our train enthusiast. Then off to the hospital to meet with anesthesia to get ready for Wed's procedure. This took a while, but we made it to the zoo for a short time and Josiah had a great time! Then it was off to dinner and back to the Schatz home for bed.

Tuesday was a rough, long day, but a very informative and hope-giving one. We arrived at the hospital at 9:30, Josiah was given anesthesia (which made him VERY upset, since he didn't need it for his last scan). At 10:30 he had a hi-resolution chest scan. After lunch at the cafeteria here, we headed up to see the ENT/speech pathologists at the voice clinic. Josiah was fussy and freaked out most of the time there (a very uncomfortable procedure for him - probe placed through his nose to get a good look at his vocal cords while breathing and talking). He also did some speech testing with a microphone/computer that we've never had done before. Results of the tests showed that, indeed, his vocal cords were not really moving, but we found out for the first time that this was not "the end of the world", as it is treatable with surgery/therapy. However, Josiah may have voice issues (a light, breathy voice) as a result, and we'll do some voice therapy via skype and other in-home therapies to work on this, even before the surgery. Then we saw the pulmonologist, who gave us a LOT of valuable information that I won't burden you with here, but suffice it to say, we were very hopeful going into Wednesday morning's bronch. Finally, we saw the Gastrointerologist, who basically said he didn't think Josiah was refluxing...the shortest appointment of the week so far! When we were FINALLY done (around 5:45pm!), we headed to the Great American Ball Park for a Cincinnati Reds game, which daddy splurged and got us 7th row tickets to (...which happened to be a few rows over and up from Pete Rose, who was also at the game..).

Wednesday, the day we had been anxiously waiting for! Finally it was time for the triple procedure - bronchoscopy, laryngoscopy, endoscopy, and maybe a few other oscopies, I lost count! They also inserted an impedence probe through Josiah's nose all the way down to his tummy and left it in (will be taken out after 24 hours, tomorrow morning) to accurately measure reflux posssibilities. Josiah was pretty fussy (as he went to bed pretty late and got up pretty early....and was very tired of procedures at this point), but finally after an 8:00 arrival time, he was put "out" of his misery at 10:00 and taken to the OR where 4 doctors "did their thang". (sorry, I'm getting tired too....!) After an hour, they came out and spoke to us and here is the nutshell:

THERE'S A REALISTIC POSSIBILITY WE'RE GETTING HIS TRACH OUT SOON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!(do I sound a little excited?!?!?!??!?!?!?!?!?!??!?!?!?!?!?!?!?!?)As long as all the tests run this week and biopsies/washes that were done don't produce any red flags, i.e. signaling other issues that might need to be treated first. It could even happen as soon as 6 weeks or so....but I've learned to be ready for things to change at any moment, as some problems wait and rear their heads AFTER we've gotten all excited, but anyway, here's the tentative plan. He will have a single-stage reconstruction of his upper airway, with two grafts put in - one in the trachea area which has somewhat collapsed, and one between the arytenoids which are attached to the vocal cords, and are preventing them from moving due to scarring. The trach will be removed at this point! When that surgery is scheduled, he will be in the hospital here for 2 weeks and then must stay in the area one more week. Then, 2-4 weeks later we come back to Cincinnati for checking up on, then again a few weeks later, etc, etc....its a lengthy process to make sure everything is okay, but well worth it. The doctor in charge of this reconstuction is actually the one who INVENTED it!!!!! And has been, along with his wonderful team of physicians, improving upon it for a while. Needless to say, we have been very impressed with the doctors here.

I know many of you are tired of reading (if in fact you've made it this far), but I have to tell a quick story of our flight here. As many of you know, Josiah is quite the "charmer", loves people as soon as he meets them, etc. So as we were boarding the plane, we happened to be ahead of the pilot who Josiah had a lengthy conversation with. When we were readay for take-off and the pilot got on to welcome everyone, he said "and I'd especially like to welcome Josiah on the flight - he's 4 years old, and a fine young man." Josiah was pretty excited. Throughout the flight, the flight attendant fell in love with him, and half-way through it came back and said, "can I get him some pringles or some M & M's for free?" (they're usually $3 each). So I leaned over to Josiah and asked if he'd like some chips, to which he replied, "Yes, I'll take some chips and salsa please". (spoken like a true New Mexican?!) The attendant brought him back chips, M &M's and a deck of Delta playing cards....

Thanks to ALL who have prayed for us on this trip. Unfortunately there is one more unpleasant procedure tomorrow morning (the nasal probe looking at his vocal cords again, but this time he has to eat something with it in there so they can evaluate his swallowing). Thank you to Mamoo and Papa B who have been taking amazing care of Silas in Colorado this week! We love you all! Shelly, Art and Josiah