Wednesday, January 30, 2008

Day 24

Thank you all for your prayers yesterday. After talking with a few people - including his ped's homecare nurse over the phone - I took Joshua to see the nurse at our medical centre. We know Heather (the nurse) pretty well. She took care of Matt's burns last Oct-Dec. I really trust her opinion and her abilities (Matt's burns were seriously infected until she started caring for them). So she had a look at it and decided that the scabs actually looked infected. She did a swab test and the results of that will be back on Friday. Heather actually removed the scabs completely. This was really scary to watch. I've been leaving his cele, scabs, etc alone because I was so afraid I'd make it worse if those came off. That's why yesterday, when they started to lift off and the cele began to weep and ooze, I just lost it. I bawled the whole time I changed his headcloth - sure that he'd go into shock.

She removed the scabs and cleaned it up. It bled a tiny bit (about as much as having blood taken, just a few drops). Oceana was asleep, so Matt had to stay home and I went on my own. It was really a hard time at the doctor without him. The nurse and doctor decided that since he's under what they called Palative Care (I think that's a big word for Comfort Care), they weren't going to take drastic measures. However, they really encouraged me to let them test for infection, as they said they can make him more comfortable if he does have an infection. Matt and I were surprised that they thought it was infected, since he's still doing really well (eating plenty, moving, etc).

So now our little man sports a pretty cool bandage. He has a wet dressing (probably the equivalent of gauze soaked in neosporin), then a gauze pad, then the cotton batting that goes underneath casts, then a bandage to hold it all down, and an ace bandage sleeve over that. His head doesn't feel like a water balloon now, it feels much more solid. It's much easier to hold onto as well. We'll go back Friday to have the dressing changes, and if need be, Heather will come to the house on the weekend to change it again. She figured out a way for it to be no cost for us, and we'll have the same nurse every time.

It's a bit nerve-wracking to wrap the cele. I had to hold him straight out in front of me, with his head and cele in my hands, and then pass his cele from my left to right and back again so Heather could wrap it. I'm really confident in what's she's done. She wrapped it heavily so that nothing gets in ("no buggies" as she put it).

I'm feel a bit better about it all today, but I can't tell you how scared I was. I am SO glad the ped's home care nurse called. I was not wanting to call the doctor, because I didn't want to hear them say, "Well, it was inevitable, there's nothing much we can do." I can't handle hearing that. As it was I sat in Heather's office and cried again - it's just so draining to not know minute to minute what's going to happen.

I think what's making it extra hard this week is Tristan passing away. A few days before Tristan passed away another T-18 baby, Maddox, passed away (just moments after birth). You can link to Maddox's sight through Tristan's. That's two precious babies that I've been following, and they went home to Jesus really quickly. In Tristan's case, Day 55 was a great day. But on Day 56, at 4:30 he started breathing strange. He was gone by 4:40. When the doctors have told us his infection will "move quickly" - I think of Tristan and wonder "How fast?" Yesterday had me convinced sooner was coming, instead of later.

My parents made a flying trip home last night to check on Joshua. They went back around 11. It reassuring to know our family comes at the drop of a hat. *Thank you Mum and Dad*.

But... this morning he's sleeping soundly. I didn't sleep much (Oceana was in our bed again) and I kept waking up to reach out and check Joshua. He was fine, and probably slept much better than I did.

We have to get out chest xrays today - to check for tuberculosis. Ugh. I hate immigration paperwork (just like I did every other day this week). Hopefully I'll remember everything this time. Yesterday we went down to get bloodwork done, and I had forgotten our passports and our pictures. I had to run home and pick them up (just around the corner, thank goodness). And on the "Forgotten" thread: I found my glasses. (YAH! Mom Sams - they were in that blue purse! The whole 3 weeks!) I had (or someone had) put them in my purse, in a strange pocket. I had emptied that bag and literally shaken it out, upside down. But the glasses stayed put. I'm so glad I found them (hunting for keys yesterday), they were over $300, and they're only *just* 3 years old.

Oh, and the picture is from yesterday. My babies are so cute.
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  1. Might they put him on a low dose prophylactic antibiotic? My almost 2yo has kidney reflux and takes Bactrim/septra daily to ward off uti's.

    I hear the fear in your post and it makes me want to pray that much harder for you all. It's so apparent how dearly you treasure every moment with him. **hugs**

  2. Oh mama, my heart goes out to you. Those are some big feelings to be grappling with, and you are doing a tremendous job with your boy. Sending you and your family lots of love.

  3. I worked in palliative care for years... definitions don't do it justice.
    Paliative care is what Nurse Heather is doing... making life easier for you in a time of need. Not only is Joshua blessed to have a wonderful family. His family is blessed to have people who are making his life, time with his family, more comfortable.
    I keep you all close to my heart.

  4. What a precious picture. You're right, your babies are really cute. I'm so sorry you had such a rough day. Praying against infection and for better days ahead. Glad you found the glasses! Love you

  5. "I am SO glad the ped's home care nurse called. I was not wanting to call the doctor, because I didn't want to hear them say, "Well, it was inevitable, there's nothing much we can do." I can't handle hearing that. As it was I sat in Heather's office and cried again - it's just so draining to not know minute to minute what's going to happen."
    In heavenly realms abiding, no change my heart shall fear. And safe is such confiding, for nothing changes here. The storm may roar about me, my heart may low be laid- But God is round about me, and can I be dismayed?

    Wherever He may lead me, no want shall turn me back. My shepherd is beside me and nothing shall I lack. His wisdom ever waketh, His sight is never dim. He knows the way He taketh, and I will walk with Him.

    Green pastures are before me as yet I have not seen. Bright skies will soon be 'oer me where the dark clouds have been. My hope I cannot measure, my path to life is free - My Savior has my treasure, and He will walk with me.

    Anna Waring 1820-19??
    -praying in USA

  6. This is probably a dumb suggestion but... I'm just thinking aloud (rather, through my fingers LOL) so please forgive me!

    Is there any way they could keep the cele "wrapped" or "bandaged" with the wet gauze, i.e. neosporin? That way when you go to pull off his hat cover, the neosporin will keep it slippery so the scabs can't pull off? I don't know, I was thinking about this the other night (before I read this post, obviously) and was trying to come up with ways that you could keep him relatively "safe". I know this sounds like a too-simple solution and it probably is... but hey, I guess paperclips and post-it notes were a simple solution too and look how well they did!

    Thinking and praying for you guys always... BIG HUGS for all of you!

  7. I hear you on the immigration office. They sure know how to make life complicated for people.