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!