Friday Afternoon - A Josiah Update

Hey Ya'll

This won't be eloquant or pretty since I'm kind of crammed for time and want to head back to Josiah's room since I'm pretty sure he's going to wake up soon.

Josiah was put into isolation again yesterday with the precaution that he might be sick again. Yesterday morning his aspirate and nose boogers were green (bad colour!), but today they are more creamy (yet still thick, sticky, and frequent - probably stuff you don't really want to hear!) Anyways, I keep commenting to Marie that this is the best sick I've ever seen him. The aspirate test came back negative and so the doctors are waiting for his virus results. Josiah does seem to be a little more irritable as of late (crying more, clammy, etc) but he's still teething - a second tooth is popping up! - which can easily account for that stuff.

Josiah has had 2 major spells this week (yesterday and the day before) and both seem to be secretion related (imagine waking up and finding you can't breathe because you have a gluey substance in your throat - good reason to freak out!). He's been really good today and even though he woke up upset because of secretions, he cried hard without going into a d-sat and we were able to get his airway clear with minimal instil (we sometimes have to place a few drops of saline into his airway if it is clogged or sticky to help him clear it out). The last couple of mornings there were moments where it was difficult to pass the suction cathader through his trache (blockage, stickiness) but today we had no such problems.

Josiah's spine situation seems to be getting worse. As mentioned before, he has what appears to be a humpback with scoliosis. The OT confirmed that it was getting worse than her last look at it a few weeks ago, and so we hope in the near future someone will be able to come up with something for Josiah. He's going to be a bit of a pioneer again because the youngest patient they have ever treated for back issues was a 1 year-old (it usually takes a while to back issues to be obvious), so we're not sure what the next few months will hold in that area.

It was amazing, though, to see how much better his complexion and ability to breathe radically improved when he receives back support. Basically, with his spine the way it is nice now, Josiah is always scrunched over when he is sat up and is unable to fully open up his lungs/diaphram. But when supported properly (a couple of hands placed firmly on his back) he becomes more alert, has better colour in his cheeks, and breathes without difficulty. So cool, but so odd that we have never noticed until now.

Josiah is certainly smiling more and I'm pretty sure it's because he loves mommy's laugh. He gets these incredibly squinty eyes and huge mouth when he goes into a smile - SO CUTE!

There's probably more that I have neglected to add, but I think it's time for me to go. Thanks to our visitors who popped by this week: Jen H. & Alice (I hope I remembered you names correctly!) and Leanne K. & Miranda E.

In God's Peace.
- Andrew, Marie & Josiah

Sunday Night - A Josiah Update

Thanks for your patience and understanding as I was off busy with Xtreme. There might be another period of quiet after this post as I will be spending most of the week with Josiah in Vancouver.

Josiah has had a incredible week :) He's doing very well, going for longer periods off his CPAP and is getting MUCH MORE animated. Josiah moves his mouth around a lot in talking motions, has been kicking his feet like crazy, and is handing out a lot more smiles. And yesterday we were able to go outside for the first time in 5 weeks!! And the neatest thing was that we were able to go outside just the three of us without any nurse support. Yay!! It was so great. It was only 15 minutes, but we could tell he enjoyed it and we are hoping to do a lot more of it in the weeks to come.

We really have no timeline to go home, but we are of the feeling that the doctors are waiting until he passes the 9 month mark to see how the malaysia in his airways responds.

Funniest thing in the world: watching Josiah try to put his soother in his mouth (kinda misses a lot but man he's persistent and puts on a great show!!) With the CPAP Josiah makes a lot of coo-ing and snoring sounds which is so cute, and he's starting to cry/whine to get his way (like his soother). Smart boy ;) He's also become very dependent on his birdie mobile, to the point he'll ignore us for long periods of time and gets really confused when they are turned off.

Marie's mom was able to visit for 3 days this past week and that was SO GOOD. Thanks also to our other visitors who dropped by: Ron, Betty-Lou, Bethany & Meagan H., Rick, Rachel & Jayden H., and Loralee & Terri H.

In God's Graces.
-Andrew, Marie & Josiah

Laaaate Saturday Night - Josiah Pics

(August 13th ... Josiah's going to be the serious one in the family ...)

(August 13th ... Guy Time!)

Laaaate Saturday Night - A Josiah Update

Hello Folks

Josiah has been having an AMAZING few days - Praise God. He's been breastfeeding each day once or more, been able to handle being off the CPAP for longer sessions, and is back to being able to cry and fuss and not go into a d-sat/dying spell. WooHoo! There has really only been one occasion in the last few days where Josiah has needed to be PEEP-ed and it was very brief (he didn't want to have his clothes changed!!)

Josiah has had his first two tries in the automatic swing - he loved it and got a little upset when Marie put him back in bed! And apparently he's giving out a lot of smiles these days! Marie has decided to keep pumping and breastfeeding when she can since Josiah did not handle the switch to formula very well. She might try again in a month when Josiah's a little more stable and older.
Josiah needed his g-tube replaced this week. The balloon had a slow leak and Josiah wasn't impressed with the in and out of the tube this week, but he handled it all well.

It looks like Marie's mom is coming out to visit for a few days next wek while I'm busy with Xtreme - SO GOOD. Marie's parents left just before Josiah his trache (I think ... ) and so he's a completely different baby from when they knew him! I'm so excited for Marie and her mom to hang out since it's been so long, especially since I won't be in Vancouver much in the next week (for those who don't know, Xtreme is a week-long program for jr high youth which I lead: lake, water slides, hiking and camping - Good Times, but crazy stressful to plan and execute!)

Anyways, the posts over the next week may be few just because I'm going to be busy and away from the computer.

Thanks for your continued prayers. Marie asks that we pray that Josiah keeps on having good days because it gives him strength, really accelerates his development, and brings his discharge date closer!

Much Love.
- Andrew, Marie & Josiah

Thursday Morning - A Josiah Update

Today's Thursday right? I can't tell any more ... :)

Josiah a couple of days ago was moved into the main room and he's totally fine with it. It's too bad that we didn't get our old spot back (that was prime!) but we can't be selfish. Last night Josiah had a major spell (30 minutes long) and a short one some time later, so he was sedated to help him sleep but he's been awake for an hour already this morning. Josiah is fine and chipper (and he usually is after a major spell) but it was pretty traumatic because Marie is drawing up a lot of blood with his suctions. I think part of the problem was yesterday was an odd day for him: he fell asleep at 7 PM and didn't wake up, so his bio-clock was probably all messed up in the middle of the night.

Thanks to our visitors: Trina U., Leanne K., and my parents.

For the last two weeks it feels like I've been sleepwalking. No amount of sleep or coffee is enough for me right now. This week and next I am very swamped with Xtreme at my church (a week-long program for jr high students). Lots of prep, lots of kids, lots of work, and lots of stress so I'm not going to see much of Marie and Josiah over the next 12 days. Your prayers would be appreciated.

Grace & Peace.
- Andrew, Marie, & Josiah

Tuesday Morning - A Josiah Update

Hi All

Josiah had a wonderful Monday and yes he is out of isolation - WooHoo! For the moment all they have done is left his door open to the main room, but he might get moved into the main room later. It's nice have the large separate room to keep all his stuff in and gives us some privacy, but it is designed for isolation and should be kept open for really sick kids.

Other than that, we just feel really fortunate to have such amazing nurses. Josiah had a great time even though mommy and daddy were gone for a day because the nurses were able to make the time to play with him and take him out of the room to hang out at the nursing station with everyone, and last night when Marie and I came back from dinner his nurse had read him a STACK of books (and he loved every second of it!).

Josiah breastfed twice yesterday, which is making Marie's decision to stop pumping really difficult. Josiah was started on formula yesterday too (half formula, half breast milk) and so we'll see how he adjusts.

Thanks for your ongoing prayers. Oh, and recent visitors: Jen G., Trina U., and Peter & Alice K. (sorry we missed you!).
- Andrew, Marie & Josiah

Late Sunday Night - A Josiah Update

(August 6th, a good sleep includes CPAP, my hands, and a toy securing my soother in place!)

(August 7th, there's nothing glamorous about a cold!)

(July 30th, Josiah's first tummy time with no brady's or d-sats!)
... try to spot the special hole cut in the foam for his trach - thanks OT's & PT's!

(August 4th, Josiah getting more hands on)

(August 1st, Marie's sister Emily & Morgan visiting)

(August 1st, Josiah jamming with some air guitar to Disney classics)

(August 1st, Josiah says Hello!)

Josiah has had a pretty good weekend. Early Saturday was the last time he had a major spell, and he was sedated a little to help him sleep. Today he a good day as well. We were concerned earlier in the day that his secretions were getting quite yellow, but they seemed to clear up. If things all go well Josiah may be moved out of isolation tomorrow - Yay!

Other big news: Josiah's first tooth is coming in! Probably has added to the irritability of life, but he's a trooper. Josiah is getting better at grabbing for objects around him (LOVES to yank on his CPAP hose and g-tube - bad boy!) and loves watching the birdie mobile that he has in his crib. He tries so hard to talk with mommy, moving his mouth around in talking motions - so cute! And he's getting around to kicking his legs (and not just when he's gotta pass gas!).

Lots of Love.
- Andrew, Marie & Josiah

Friday Morning - A Josiah Update

Good Morning

Another brief'er: Josiah had a couple spells last night, not sure if they would be classified major or minor but we are drawing up some blood with his secretions so the spells would certainly have been more intense and painful (hopefully it wasn't because a nurse suctioned too deep or too aggressively). And he has had one small spell this morning, but he didn't d-sat or brady, just needed PEEP for a while. You can pray for Josiah's strength and that he won't have any other spells today. Thankfully the doctors haven't talked about sedating him today (yet), but if Josiah were to have more spells throughout the day sedation would become a likely option.

The doctor is planning to do a trach change for Josiah for 11:30 this morning so you can pray that that goes smoothly (the change has gone awesome every time so far). The staff have probably decided that the trach needs to be replaced in case there is bacteria growing on it or something (or it could be getting coated with secretions, narrowing Josiah's airway). And tomorrow we are planning to feed Josiah some of his stored frozen milk for three days just in case Marie is sick (she's been feeling off for some time now) and is as a result causing Josiah's sickness to drag on.

Thanks.
In God's Love.
- Andrew, Marie & Josiah

Wednesday Afternoon - A Josiah Update

Hey All

Just a brief'er. Josiah is still doing pretty good, despite all things. While he's had a couple minor spells each day, he's had no major spells since the five he had on Sunday (just moments when he's needed some pressure for a couple of minutes to settle down - and no drop in heart rate). Josiah is sleeping lots (which is great) and has had wonderful alert and fun times when he is awake. He had a nasty yeast infection for a couple of days on the back of his neck (under his trach ties) but that has cleaned up really good now. The doctor has decided that in the future Josiah will be given sedatives any time he has a couple major spells in the day (just to help him rest and build up his strength to break the cycle). We don't like the idea of sedating him - he's so groggy! - but we know it's for the best. We were warned early on that often the 6-9 month range is the most difficult for trach babies.

A prayer request that is coming out of stay in the hospital: A mother we have gotten to know a long the way (let's call her "Dee" for privacy reasons) has just been diagnosed with leukemia. Her child has been here in the NICU a few months now (preemie) and this mom is now at VGH down the road. This is just a 'worst nightmare' situation, and even though we still proclaim that God is good and in charge, we can't help but see this is as a "kick someone while they're on the ground" moment. Your prayers on her behalf, her child, and her family and friends would be greatly appreciated. Her son continues to have a hard time getting of oxygen-support in the NICU so you can pray about that too. Marie's hoping to be able to visit her this weekend when I'm back in Vancouver.

Grace & Peace & Love.
- Andrew, Marie & Josiah

Monday Night - A Josiah Update

Hi Guys

Thanks for all the prayers. Josiah has been having a better day by a long shot. He has spells, but nothing major. He is also on one-to-one care tonight - the nurses have finally realized that they must give him this attention. One thing that could have been much worse: Marie went out for supper and when she came back Josiah was livid and had secretions up into his CPAP. He had a quick little down 'n up with his heart rate, but it was so fast the alarm didn't go off. After Marie suctioned Josiah and settled him, she went to talk to the nurses because they were completely oblivious (because the alarm hadn't gone off) and it was this one event that really spurred the nurses to make one-on-one happen for Josiah.

Marie is doing OK, and is really relieved to see Josiah have a day so much better than yesterday. I'm still not feeling 100%, but eh. Thanks again for the prayers. Talking to God works.

Grace & Peace.
- Andrew, Marie & Josiah

Late Sunday Night - A Josiah Update

I just finished talking with Marie after not being able to talk to her all day. Josiah has had the worst day of his life. He has had five major dying spells, and Marie was certain that he wasn't going to be able to survive his last because he went limp and stopped fighting. I am bawling, stuck between being Marie and Josiah tonight/tomorrow or staying at home and make sure that I don't pass anything on to them (I haven't been feeling well for the last couple of days). We need prayer for our guy, some immediate healing and protection. It seems Josiah's spells are all secretion related: he'll be awake and chipper, and then all of a sudden he can't breathe. The main doctor is in tomorrow and so hopefully something will be done (it's impossible to do anything over a weekend, let alone a long weekend). Josiah still doesn't have one on one care, even after the fact that if Marie or haven't been by his side this week he probably would have died. I'm praying again that God will wake up people throughout the night to pray for our guy. It seems it's the hardest for Josiah when he's waking up and has to deal with all the secretions that have gathering through the night. Please remember him throughout the morning (7 to noon), as it is often his most difficult time and will set the pace for the rest of the day. Please pray that he secretions will loosen, decrease, and be not as thick. Please pray that his airway will heal (no longer inflamed and irritated) and grow. Please pray that his cold will completely disappear. Please pray that the doctors will have wisdom and that Josiah will have all the staff he needs tomorrow.

In hope and prayer.
- Andrew, Marie & Josiah

Late Saturday Night - A Josiah Update

Hi Guys

So, Josiah hasn't been moved out of isolation because it looks like he's sick again. Yesterday he spent pretty much the entire day off CPAP, and today he couldn't couldn't get off it. Further, he had a couple of really nasty long spells. It's extremely saddening and scary, but he's sleeping well tonight (good ol' Tylenol, what would we do with out you?) and hopefully he can have a nice long sleep to shake off the icks.

It seems he secretions are still pretty thick (the main reason I think that he's have his episodes) and his boogers are a little more yellow than yesterday. Further, a few adults have had this cold that Josiah has and it seems it takes a pretty long time to get over it.

So, please pray for our little man and my exhausted wife. She's just so overwrought because Josiah had such a good yesterday and she thought he had turned the corner and that things were going back to 'normal'.

Thanks.
- Andrew, Marie & Josiah

Friday Night - A Josiah Update

Hello All

Josiah has had a few really good days in a row, and tomorrow he's moving out of isolation! Yay! This is so much better for him: the last week or so Josiah hasn't been one-on-one so Marie's been spending even MORE time by his crib because the nurses wouldn't be able to respond quick enough. He's been coming off his cold really well (still has the running nose here and there) and is back to breast feeding a few times a day. We really hope that Josiah is able to get his corner bed again (and so do the nurses!) just because he has so much stuff, it's the most roomie (of the spots in the large room), and it's the most private.

Marie was able to take a couple of days in Abbotsford this, to relax and to spend time with her sister and her fiance. Josiah will probably remain on CPAP for a while because it really helps him to relax when he's sleeping. It's more and more likely that he'll go home with CPAP so it means even more equipment to deal with, but - eh - it's for the best.

Josiah has flashed a couple more smiles this week, but I haven't been able to catch one yet :(

There has been some concern about Josiah's g-tube. It seems that it is sucked into his abdomen every once a while, after giving it some thought the doctors have decided it's because Josiah has incredible ab muscles :) When ever he gets rigid, his muscles tighten up and draw the g-tube in. So whenever ever we notice it, we just deflate the balloon (draw out the water), adjust the tube, and then refill the balloon.

That's all I really have to say (brief, eh?) I'll try to upload some pictures of Josiah early next week (they're still on the camera at the hospital).

In God's Grace.
- Andrew, Marie & Josiah