a night with jonah - worth praying for

I just thought you guys might like to know what it is you pray for every night at 8pm. Jonah had a good night last night, so we were able to go slow enough to take some pictures.

This is the current set-up on our dining room table. The house looks like it has thrown up a concoction of baby stuff mixed with a big ol' helping of medical supplies. Sometimes it feels like the walls are closing in, but it's all TOTALLY worth it for Jonah. Our church is finishing our basement room to include lots of storage for all his supplies, a changing table for dressing changes (one high enough that we're not breaking our backs like we are now), and a sink. What a beautiful gift! I can't wait til it's finished. Doing nightly dressing changes on our dining room table doesn't exactly make it conducive to eating dinner. :)

This is Jonah's left leg. It does not look this red in person. This is the knee that was so bad it made you want to cry. It's completely healed, although I think it will always be discolored. The tops of his feet still get blisters most days, so that's why it still looks a little raw. Healing is quick though, and there were no new blisters on his hands or feet tonight. Hooray!

First we unwrap the three layers of bandaging from the leg. Next, we do his exercises (below picture), especially focusing on the ankles since Jonah tends to always pull his feet up. We then wash the limb with soapy water and then rinse with regular water using a bulb syringe. We go through Chux pads (water proof blue sheets) like nobody's business. After washing, we then drain any new blisters (you want to drain blisters after the skin has been cleaned). There were no new blisters on his left leg or foot last night.

After draining his blisters, we then put double antibiotic ointment on any open or raw looking wounds, especially the blisters we've just drained. We then cover the limb in Aquaphor (tried covering the bandages and not his leg, but they seem to stay put better if we grease up his leg rather than the bandaging.) We then put cut up strips of Vaseline gauze (slathered on both sides in LOTS of extra Aquaphor to prevent drying out) between each toe, and then use two to three half pieces of Vaseline gauze to create a little boot on Jonah's foot.

We then wrap his leg using Mepilex Transfer. It usually takes three strips, the top strip having three slits cut in it to make it lay on his upper thigh better. (Whoever suggested that, I could KISS you - great idea!!! Has made our lives - and Jonah's thighs - so much better.) (Keila, sorry I'm using the burp cloth you gave us to cover Jonah's wee-wee. He has peed on me one too many times. I also use it as a burp cloth, just so you know... having washed it thoroughly in hot water, of course).

We then wrap the Transfer using Conco Conforming Gauze. It's much softer than the Kendall Conform we were using at the hospital.

Then, we put Tubifast on top (green stripe for legs, red stripe for arms) to hold it all in place. What I LOVE about Tubifast is that you can wash it and use it over and over again. It gets softer with each washing. Stringy little boogers though after a wash. We spend lots of time cutting the strings off. Thanks for the suggestion about washing and drying them in a lingerie bag. I was driving myself crazy having to pull 10 pieces of staticky Tubifast pieces off of Jonah's blankets.

Matt unwrapping Jonah's right leg... wait for it... wait for it...

Look at that BEAUTIFUL skin!!! Look what you've been praying for. Look what God has done! Praise the LORD!

Jonah had a new blister on the back of his right heel last night.

About to lance the new blister. You have to lance them or they will pull the edges of the skin, and the blister will just get bigger and bigger. And a lot of times they refill if you don't poke enough holes or don't make sure it's completely drained. Lancing is VERY hard to do if Jonah is not calm, especially if the blisters are in a dangerous spot. (I had to lance one yesterday that was on his eye lid... talk about scary. I waited until he was really, really, really asleep. He didn't even flinch).

Jonah's left arm. Isn't it beautiful? Look at those perfect fingers. I just want to kiss them all over. Do you remember how I described his hands before - that the looked as if he had put them in a fire and left them there? They were completely raw - the whole top layer of skin completely gone - and deep red and purple. But look!!! I can't even tell you how amazing it has been watching God heal him - right before our very eyes. Jonah is so close to just wearing a mitten on this hand, but the other side is a little raw from a couple blisters he had. Just waiting for those to heal, and hopefully we'll be at mitten stage.

Jonah's right arm. The process for the arm is basically the same as for the leg - unbandage, exercises (focusing on his wrists, pinkies, but most importantly his thumbs with he keeps pulled in all the time), wash, rinse, dry, Vaseline gauze in between fingers, around thumb, hand, and wrist, Transfer around the arm, Conco Conforming, Tubifast. He HATES having his hands bandaged. It is extremely hard to wrap a clinched fist. Last night he did well. Usually it would be very difficult to get a picture of his opened hand. This hand is in a mitten tonight instead of bandaged. I'm TERRIFIED of what we might find tomorrow, but we have to learn from trial and error. If we could keep him in mittens instead of all bandaged up, he could have more movement of his fingers and thumbs. I'm afraid to keep them completely unwrapped at this point, even if they were completely healed.

After we do the four limbs, we wash and rewrap his torso. His back is blister free and has been since the beginning - even when it's not bandaged. I make him a little shirt with Transfer that goes over his right shoulder, and then wrap the Conco Conforming around him. He does NOT like being picked up for the wrap around. But luckily it's the last thing we do (besides a final diaper change and hair washing), so he gets over it pretty quickly.

And VOILA! The clean (sort of), sweet smelling (Focus on the head, people. Focus on the head), newly bandaged, newly FuzziBunz-ed Jonah!

Isn't he just the sweetest thing? Worth praying for huh? I cannot tell you how much we appreciate your daily and nightly prayers for Jonah. I know you may just feel sometimes that you are saying the same words over and over again at the same time every night - maybe you don't "feel" them like you did the first time you prayed. But look what you're doing! Thank you from the bottom of our hearts, from the tops of our heads to the tips of our toes. Thank you for praying for Jonah. And thank you, God, for healing our little boy.