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Jun. 28, 2009
REALLY big surprise
Yesterday I posted about how surprised I was to find out that Noah had a line infection. Today we got the results from cultures taken from the discharge around Noah's line. The infection in Noah's chest is MRSA - the antibiotic-resistant super bug. I am absolutely stunned. We still don't know what is growing out of Noah's line. We know it is a Staph A,which means that it, too, could be MRSA. We expect to have the line bug identified by tomorrow.
Of course, today is Sunday, so I won't really get to speak to Noah's team until tomorrow. I don't know what this means for Noah or his line. He is being treated with vancomycin which is an appropriate choice for MRSA and which could clear the infection. The highly distressing aspect of this is that we already treated this infection with vancomycin a couple of weeks ago and it obviously didn't get better at that point - in fact, it may have spread to his line.
The balancing act here is to put Noah's safety and well-being first, but at the same time be as expedient as possible. For example, he's looking paler, so I want a CBC done tomorrow - if he needs a transfusion, I want to do it ASAP rather than finding out on our discharge day that he needs one. If the line needs to be pulled, I want it done as quickly as possible. I don't want to shortchange Noah in ANY way, but I don't want to dawdle either. I had a difficult time communicating this to the doctors today but am confident that the regular team will understand when we talk tomorrow.
Specific prayer requests are that we would be able to clear this infection, that things would be done in an expedient and orderly fashion, and that Noah will feel better. He is hurting, itching, and weary. He has huge hive-like welts all over and he woke up constantly last night because he was so miserable. His benadryl has been increased to every 6 hours instead of every 8 hours, and the dose has also been increased. This has provided some relief but he is still uncomfortable. He is also VERY frustrated because he is now restricted from doing most of his favorite things. Due to the MRSA, he can leave the room but can only do so in a wagon. He can't touch things outside of the room. For example, he can go to the playroom, but can't play with the train table, or go down the slide, or play on the gym mats. He can only play with toys that he can use while in the wagon. He can't push the buttons on the elevator, which is a BIG deal for him - elevator riding is a favorite pasttime, and pushing the buttons is the best part. He can go down to the fountain, which he loves, and I was able to pick up some rolls of pennies so he has a big stash of money to throw in the water. Right now he isn't hooked up to any pumps (for a couple of hours), so pulling him around isn't too much of a big deal. Tonight and tomorrow will be a different story. It's nearly impossible for one person to pull an unweildy wagon while pushing his very heavily loaded IV pump. Please pray that he will be content and easily amused.
In the midst of this unsettling and somewhat scary news, I am surrounded by the clear and obvious hand of God. He has been showing up in big and amazing ways, perhaps because He knew that I would need to see Him at work before this happened. Here are just some examples of what has happened over the last week or so:
** We've always wanted a game room but never had the space or the money for game tables. I've had an antique table in our family room and I had wanted to put it away somewhere to protect it, but we had no storage space. Jeff and our employee Matt did a bunch of reorganizing in the basement (not knowing I needed a place for the table) and ended up clearing out the PERFECT place for this table. At the same time, some friends called and told us they had an airhockey table that they didn't need and would like to give us. Had they called earlier, I would have said that we had no space, but the timing was perfect and we now have a lovely wooden air hockey table in our family room - the kids are having a blast!
** When Noah is in the hospital, he can watch all the DVD's he wants, but his viewing time at home is strictly limited. Because he can get to our DVD player, it has been hard to enforce this standard at home. He's confused by the double standard and it is causing problems. We'd looked at armoire-style entertainment centers but couldn't even think of affording them.
Our church just hosted a Freecycle day, which was like a yardsale but all items were free. This was primarily an outreach to the needy. Jeff and I had stuff to donate but every time we wanted to go drop things off at the storage unit at church, something would come up and we wouldn't be able to get there. The day that we finally got to church with our stuff, they were pulling things out of the storage unit and starting to sort the in the gym. The first thing to meet my eyes was an antique armoire! I sort of gasped and said, "That is just what we have needed!" When the Freecycle coordinators found out why I wanted/needed it so much, they put our name on it and arranged to have it delivered to our home! Jeff added shelves and we now have a beautiful way to store our DVD player/tv set - and it has child locks so Noah can't get into it!
**The night after we got the armoire, I was in bed looking at Noah's little dresser that we keep in our room. It's a changing table with three very small drawers, and while it worked quite well for newborn Noah's clothes, it simply won't hold his toddler clothes and Mary Faith's baby clothes. They simply won't fit, so we always have a couple of laundry baskets of their clothes - not the most attractive look for the bedroom! Without saying anything to anyone, I asked the Lord to just please drop a dresser in my lap - and to do it in the next day or two so I could donate the changing table to the Freecycle day. The next morning, one of Noah's therapists came by and told me that she had a gorgeous girl's bedroom suite she didn't need and she was convinced that I was supposed to have it. It consisted of a twin bed (which we stored for Sarah), a mirror, and TWO DRESSERS! Both of them fit on the wall in our room where we had the changing table, and now Noah and Mary Faith each have their own dressers. When we spoke the Freecyle coordinator, we found out that a lady in our church had just learned she was expecting. We called her and found out that she is in need of a changing table and dresser for her new baby, so we were able to bless her with the one we no longer need now.
** This summer, my mom got the neatest cup from Starbucks. It looks just like one of the clear plastic disposable cups that Starbucks uses for their cold drinks, but it is actually an insulated, double-walled cup with a screw-on lid and reusable hard plastic straw. It is a seriously cute cup. Now, I very seldom get excited about "stuff" or feel like I have to have the latest greatest thing, but I fell in love with this cup. After all, I'd been wanting an insulated and spill proof cup for the car and the hospital, and this fit the bill . . . but I didn't have the money to buy one for myself. After a few weeks, I got a Starbucks gift card and raced down to Starbucks to buy the cup, but they were sold out and weren't able to get any more. :-( I went home and checked the website, but they were sold out too.
Yesterday I was talking to my mom about the cup - she wanted to know if I had ever bought one, so I told her my story. It wasn't a big deal - just a cup - just one of those little things. A couple hours after I spoke with my mom, Hannah called me to tell me that a blog reader from Atlanta had come to our house on her way through town and had brought a box of goodies to us. The box contained a Bi-Lo gift card, fun stuff for the kids, etc. Hannah then casually mentioned that the box also contained a Starbucks gift card in a "neat plastic cup - you know, like the one Fifi (what the kids call my mom) has." She just breezed past it, not realizing HOW much I had wanted a cup like that. I almost fell off my chair and told her to back up and tell me more about the cup. :-) Yep, it was THE CUP.
It defies comprehension to think that the Creator of the universe would care so much about me that He would use someone to give me a simple little cup that I fancied. Nothing is too big for Him. Nothing is too small for him. He is big enough for anything we need, but never too big or too busy to be intimately involved in every aspect of our lives. He loves us just that much. He loves Noah just that much. I don't know what tomorrow will bring, or if my desires and plans for this week will play out "my" way, but that's OK. I know the One who does know, and I trust his Hand.
Blessings,
Kate
P.S. Some of you asked about cards for Hannah - I know she would LOVE to get some. :-) You can send her mail to:
Hannah Grace Estes
c/o Hands and Hearts
206 Yosemite Dr.
Greenwood, SC 29649
She doesn't have her own email address, but you can email her at our address using the button on the sidebar.
Thank you for asking!
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Jun. 28, 2009 - Blessings
I'm sorry to hear that Noah has MRSA. I have it, too. Had it for years. It flares up every now and then. They say it never leaves you, but I wonder. I can't imagine a little one having this. YCHHH Vancomycin always kills it for me, followed up by a course or two of sulfa. But then I'm an old lady. I'm sure they have better treatments for angels like Noah.
I'm thrilled to hear of those blessings coming your way, though! Sometimes, it's the little things that make all the difference. Guess He knows, eh? And, yes, it's wild to think that God knows about things like insulated Starbucks cups or that He even cares. But He does.
Prayers continue for all of you, Kate. And especially for my MRSA bud, Noah. I know the isolation guidelines must be frustrating to him. Could he still push the elevator buttons if you put small rubber gloves on him? Just something to think about. Folks could touch me with gloves on, so why not vice versa?
Big squishy hugz to you all :)