Hanging in there

We've been busy. We got our answer and it was that D has to stay in the downtown hospital on IV meds. *sigh* He is doing fine, though a little cranky yesterday - we're chalking that up to teething. I think he'll be home on Thursday.


T's parents are in town -T and his dad are at the Nascar race today - and they are going to stay until Wednesday. That will be a great help and let me stay at the hospital each night, I think.


H is sick now, she threw up last night and early this morning. I hope she gets to feeling better soon! Though, I must admit that I enjoy a quiet and cuddlly H!

Extended Stay

So it looks like an extended stay. Unless we can get D's meds changed to oral medication rather than IV. We may know that answer by tomorrow. If he has to stay in for 7-14 days of antibiotic treatment we're trying to see if he could be moved to the hospital closer to our house.

After that, though, they are talking about a month off of IV meds of any kind, including calcium. That will be a welcome break.

It's so hard to hear them even talk about putting in a central line. They can't say exactly what is causing the infections, but they can say that he'll move slowly but surely downhill without his calcium treatments. So, even if they can't give us a source of the infections... we may have to put another port in! I wish I had some guidance. I feel like Tony and I are the only ones saying, "Wait, Stop, Think".

It's like when I play euchre with really good players who count cards, and they reach some point in the game in just throw their cards in, because they know how the last trick or two will go. I always make them play it out so I understand. I feel like I'm having to speak up the doctors and say, wait, I can't see all your cards, explain to me...

Hospital Again!

D had a low fever on Friday morning, it was gone in the afternoon, but then spiked up to 103.9 at 6pm. (His hickman site was looking icky, too) :( So I took him to the ER and he was 104.4 by the time he was seen. They admitted him for fever and possible line infection. The infection was confirmed 12 hours later, and his site looks worse and worse. They were saying Saturday that it had to come out. There have been complications (on the hospital's side) in getting the correct paperwork done for some foster care issues (ugh!) but it will be removed tomorrow...

Power Outtage

On Tuesday morning around 7:15, just *before* I started making H's oatmeal, and just *after* I heard the toaster oven DING that my toast was done... the power went out! H was already awake and downstairs. The power being out was baffling to her. She was amazed by everything that wasn't working. We tried to explain it. When I opened the door to the back yard to check out the temperature... "Hey! The batteries are still working out there!" And I didn't really know what to say, because the sun just... is. It was an entertaining morning! The power didn't come on until just before we left for school at 8:15am. G was convinced that someone went into her room and shut off her fan!

Hickman Problems

So here's a picture of hickman #2. I noticed some pus by the stiches and several small blisters around the hickman site, so I made calls this morning and ended up driving downtown to see a surgery doctor there. He didn't think it looked infected, though he couldn't rule that out. He thought the pus I'd seen was likely from the blisters, which were likely an alergic reaction to the tap and window bandage. *sigh* Basically he said to go home and come back if it got worse, and don't use tape around the edge of the bandage.

I really, really hope he's right and it's not infected. I wonder, though, because it looks just like it did in the early days of the infection of hickman #1. And I feel like I felt with port #2 when I would see something wrong, but take him in and everything looked fine... So we'll see what comes of this.

Locked in at Target

On Friday I brought D home from the hospital with a prescription for Tylenol with codine. When Tony got home I took off for Target to get a break from the kids and pick up the medicine. By this time D was cranky and I was feeling very badly that I hadn't just taken him with to get it sooner...

I dropped off the prescription, thinking to myself that never again would I be at the pharmacy at 5pm on a Friday... it was so busy! I was wandering through Target, killing time while waiting for the prescription to be ready when the overhead speaker came on.

"Attention Target shoppers, the national weather center has issued a Tornado warning for this area. Please move away from all doors and windows and take shelter in the back of the store in the domestics department." I looked around and everyone continued to shop, though a few whipped out their cell phones as I was doing. I texted T, who told me where the tornado had touched down, which was a ways away. I didn't want to leave without the pain meds. Since it was time, I went to the pharmacy where there was now a LONG line. The front cashiers were still working, as was the pharmacy. People were checking out and leaving, so I waited for my prescription. The announcement was made a few times over the next 10 minutes. I got a phone call from Tony and we discussed if I should stay put or drive home. At that point it seemed safe to go home. A couple minutes later a Target manager caleld over the employee's walkie talkies and told them to shut down and procede to domestics. I was next in line, and I was surprised, but they actually checked out my prescription as they locked down the pharmacy and we all went to the back of the store. I decided if Target was going to shut down I wasn't leaving. Actually, I'm not sure if I would have been allowed to leave.

It was so wierd! No one was panicky. Almost everyone was on a cell phone. I sat on the floor in a carpeted section. It was just surreal. One Target employee had a weather radio. About 15 minutes later an informal announcement came over the employees' walkie talkies. The person just stated where the tornados were and that our area was considered ok and they could go back to work. The funny thing was, there were so many employees all together that the announcement was louder than the overhead would have been. Such a wierd time! A funnel cloud had touched down not too far from the store; I didn't hear of any significant damage. I guess there were several small, short tornados across the area, with no loss of life or huge damage done (easy for me to say). Just a very wierd experience! It was nice to get back home and get hugs from the kids, venturing up from the basement with T.

Home Again with Hickman #2

(first off, a disclaimer - this is photo of hickman #1 - I'll try to update soon, but I'm not going to upset D right now by trying to take a picture of his hickman. If you look in the picture you can see a scar under his nipple on the right side of the picture. They put the new one in right by that scar)

OK, so here's a quickie version this hospital stay.

Thursday

11:30am Arrive at hospital, check in

12:00 pm get taken into presurgery area. D is weighed, measured, vitals taken, etc. We're put into an exam room to wait

12:40pm the anesthesiologist checks in for his presurgery visit

1:15pm the surgeon comes by for his presurgery visit. I have lots of questions, and he actually sits down and talks with me. None of the hickman options the other doctors and nurses have discussed with me are possible or likely to be helpful. I explain my concerns and problems we had with the placement of the last port. He listens attentively and offers to try to place it as much off to the side as he can. This sounds like a good solution to me. We also discuss infection control. Again, though others offered up a lot of ideas, when it comes down to it, there is nothing that can or will be done. The surgeon will give IV antibiotics in the OR. We'll be extra careful at home. That's frustrating... I check with both the doctor and several nurses and am assured that D will be admitted to the hospital after surgery.

1:40pm D goes back for surgery

2:40pm he's out of surgery. The surgeon checks in with me. All went well. No problems

3:40pm they call me back to see D and usher us into the recovery area for kids going home (normally we walk to his inpatient room) When I ask the nurses they tell me the doctor changed the orders. I ask to speak with the doctor. They sit me in a rocking chair and put D in my arms. He is completely out, never even opens his eyes or moves a muscle. My arm goes to sleep. It's nice to cuddle him, but he doesn't even know I'm there... there's no bed to lay him in.

However, my rocking chair is close to the nurses station, so I overhear a lot. They page the surgeon. He tells them to page the fellow (this is medical jargon for surgeon in training) who changed the orders and let her know that D can be checked in. They call the fellow, who is apparently quite irritable. Orders are changed, but not put in the computer correctly or fully and they have to call her again to let her know she needs to add on that he can't have food by mouth, and that she didn't order any IV fluids. She doesn't want to make changes (and is apparently yelling in the background) and tells them to remove the IV. The nurse takes out his IV along with removing all the tape they used to cover it and immobilize his hand... he never even flinches, and only opens his eyes once.

While I"m waiting I check out his new hickman. What??? They have placed it about 1.5 inches away from his feeding tube. He used to have a port there and it was a nightmare to keep clean, as ooze from his feeding tube was constantly getting on the bandages... So I guess the nightmare is on again. I overhear the surgeon fellow's name and try to remember it.

5:00pm we taken upstairs. Because D is too heavy for me to carry, we pull him up in a hospital wagon. When we get to the hospital room the bed hasn't arrived yet, but D doesn't care, he's still OUT. He gets checked into the new room. His bed arrives. He sleeps through being weighed and measured again.

7:00pm D wakes up and is playing a bit. He seems to be in pain so he gets some pain meds. He plays happily, sits on my lap, and starts a real feeding!

10:30pm I turn the lights out and D falls asleep

Friday

6:00am I wake up so I can catch the surgeon doing rounds and talk with him/her.

6:15am Surgery rounds - I check out her name tag (surgeons rarely introduce themselves) and see that it's our special fellow. Unfortunately I haven't spent enough time thinking about what and how I want to say the things I want to say. I show her how close the hickman is to the g-tube and she says something about how they have to go with the vein they can find, and they did their best. (At the time that shuts me up, but later I realize they didn't even try the other side... ) I think in my head that I want to ask her what the fuss was about the day before, and why she tried to send D home, and why she didn't talk to me about it ever, but I can't think of the right words and she seems to be in a hurry, so I say I don't have any more questions, and she leaves. I immediately think of many more questions, of course.

11:30am D is discharged from the hospital and we come home.

OK, so that wasn't a short version. But it was venting for me. I didn't put in nearly enough about how awesome the nurses were, and wonderful they are with D and how well they handle the doctors. We are home again, and that feels good.

Adoption Post #1

I was just reading through my past blogs. It was very cool to see

the posts about what we were going through when considering to foster again. So I decided I needed to do a little blogging about D and us wanting to adopt him.

When we accepted placement of D we'd heard that he was "adoption track". But that can mean a lot of things. I simply verified that we were in no way saying we'd be an adoptive placement for him. We weren't looking to do that. We just figured we were pretty good at the fostering thing and we should do it. I guess that wasn't God's plan.

So, we fell totally and completely in love with D. Fast. I couldn't believe it. About a month after he was with us I finally had time to read his entire file and I realized that not only was he "adoption track" but that he was already available for adoption. His parents' rights had been terminated. That's a sad and happy thing. Sad, because I don't want to think about what his biological family is missing and what they must have gone through. Happy, because terminating rights typically take a LONG time, and that part was already done for David!

However, adopting a child with significant medical needs, not to mention developmental delays is, well, a significant decision. So we decided to take our time with it. A conversation with D's social worker put us at ease in taking our time to make this decision. So we started thinking and praying. It just seemed so, I don't know, STUPID, to even consider something like this. Honestly, my heart was already sure, it was my brain that was questioning. And T played his role as the rational part of our partnership. :) So we prayed and thought.

Well, in July a few things started falling into place. We got a new home nurse who we knew would be short term. That was a little frustrating. Why even bother? But she turned out to be FABULOUS. AND she had adopted a special needs child from foster care. I learned a LOT from her in the time she was here.

Then we went away to family camp at Camp Luther. The pastor in charge of chapel was someone I hadn't met before. He introduced himself, his wife, and their grown daughter to the whole camp. I immediately knew I needed to talk with them. Their daughter has some sort of developmental delays. She lives apart from her parents now, in an assisted living facility. They adopted her when she was a little older than D. I introduced myself to the mom, and we spent pretty much every afternoon in the shade outside the camp pool talking about their decisions and ours.

We'd prayed to God for guidance, and got these wonderful helpers to answer questions and help us think about our decision.

Then in late July, since we didn't have a home health nurse, I took D with me, Z, H, and G to see a dollar movie at the theater. It was Clifford's Big Movie. D loved it! I texted T to tell him it was a hit. He could just imagine D on my lap, laughing at Clifford. He texted back and asked "Is he laughing" and I texted "Yes!" That afternoon we made the call to D's worker to start the adoption ball rolling.

We got our first set of papers in early August. We signed away permissions for our driver's license checks, child abuse registry checks, FBI checks, etc. We gave them earnings statements. I've since then gotten Z, H, and G's health forms filled out. T and I need to go in and have physicals done. D's social worker is getting a copy of our homestudy from H's adoption. She'll just have to update it since John has moved out and almost a year has gone by. That should be fairly quick. I asked her if we might be in front of the judge for the adoption by the end of the year. Probably. So, based on past experience, I'm hoping it will be done by June 2009. I'll keep you posted on our progress.

Crocheting for H's Bear

This weekend H was feeling sick. Cold/Asthma double attack that left her short of breath and feeling cuddly. (See previous post to know why we appreciate this!) I was tired of the chain reading I'd been doing, so I got out my crochet basket and worked on a baby blanket I'd started during D's last surgery. H asked if I could make a dress for her bear. That sounded infinitely more fun. Plus, she immediately spotted some yarn that I wasn't sure what in the world I would use it for. (Hand me down yarn, I love it!) Anyway, as you can see above, the dress worked up cute!

But then H started a landslide by asking "Can you make her some fancy pants?" (That's what we call shorts under dresses- we wouldn't want to be able to see the bear's bottom!). So I was able to whip those up (please note that I made a tail hole!) and that was followed quickly by some mary jane shoes and a fancy headband. H was so happy, and so was I! I love quick projects, and even more than that, I love projects that are appreciated!

Of course, G chimed in then, wanting a dress for her webkinz. She also picked some yarn I was wanting to use up - some bumpy bright green. That worked up really fast, because it's so thick. I only got the skirt made up - I need to dig through my closet and find the matching balls!

Emotional Milestones

As parents, we read about developmental milestones and watch when our babies reach them. Good parents even make notes in a baby book about when their child did certain things. Great parents do that for their younger children, too, not just their oldest! (Hey, at least I'm a good parent!)

As foster parents we recognize emotional milestones. Cuddling has been one for us. It's pretty remarkable how much I took for granted Z&G's cuddling abilities, and their willingness to fall asleep in our arms. I don't think I really savored that as much as I should have, or realized how much of a sign of trust it was. Though, I'm greatful they had no reason to ever not trust us!

These pictures of us with H were taken in May of 2007. That's about 2 1/2 YEARS after she joined our family. They were the first times she fell asleep in our arms. 31 months before she was able to really cuddle and totally relax. When I look at these pictures, I can't remember what I did to get sunburned, but I remember exactly how I felt holding her relaxed body. I remember that I cried, and I remember that I MADE T get the camera to take a picture, even though my legs were asleep.

Our foster son D, is a pretty special guy, and he's fallen asleep in our arms from the beginning, but he wasn't a real big cuddler. He would fall asleep more sprawled across our laps than cuddled in. But a couple weeks ago it happened. I picked him up out of his carseat while he was sleeping and lifted him to my shoulder. Normally he stiffens up and arches his back, looking around to see where he is, pushing out with his arms to keep from getting too close. This time he collapsed bonelessly onto my shoulder and drooled on me. :) I cried. And I stopped everything and cuddled him. Who would have thought drool was so special? Now he does it almost every time I pick him up. For a minute if he's sleepy, for just a second if he's awake. I can't describe what happens in my heart. Sometimes it still makes me cry. But I think you're allowed to do that at emotional milestones!

And Now I Take Away... your hickman

Unfortunately, D got another line infection. That's an infection in his blood that infests the tubing the IV access (aka, the hickman). So just over 2 weeks after having it put in, they had to remove his hickman. He's completing a course of antibiotics and then they'll get ready to try again. :(