In The Process

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Still so sick

Noah is still so very, very sick.  His fevers were higher today and they were harder to bring down.  Overall he looks worse and seems to feel worse, although in true Noah fashion he still wants to get out of the room.  He wanted to go see the fish, but needed to be carried instead of walking most of the time.  He wanted to go to the playroom but just sat on our laps instead of doing much playing.  He also managed to chew through his TPN line which made a huge mess!  The little rascal sat there on his bed in a puddle of blood and TPN looking like the cat who swallowed the canary and saying "Broken?!" in the most innocent, amazed voice possible. We're suspecting that it was a plan to get a bunch of his best girlfriend/nurses to all come in and fuss over him and change his sheets.  :-)

We still don't have any answers or results.  They are running more urine studies tonight and blood studies tomorrow.  The infectious disease doctor said it is rare but possible to have a line infection and not have stuff growing out in the cultures.  If he doesn't start to turn a corner and if these other tests aren't fruitful, we may have to just take out the line.  He would need surgery to remove the line, have a PICC line placed, then wait and see if he started to do better.  Once he got better he would need surgery again to place a new line.  This would obviously be a last resort and there is no guarantee that it would actually help.

Some of you have asked about his appendix.  He had it removed when he was 12 months old.  He had major reconstructive abdominal surgery and they went ahead and removed his appendix then because it was in the totally wrong place (way up in his ribcage). 

In the midst of all of this, I had a really neat blessing yesterday.  When Noah first went home on TPN I was very overwhelmed and desperately wanted to talk to someone else who had "been there."  I didn't end up finding anyone like that until much later when I was already familiar with TPN, the broviac care, etc.  I prayed that maybe someday I would be "that person" for someone else.  Last night I met a little boy and his parents.  He is going home on TPN for a short period to help him gain weight before some surgery.  His mom and dad were concerned, overwhelmed, and frightened.  God was gracious to allow me to speak with them, encourage them, and give them some advice and suggestions.  I was also able to give them a special little wrap to protect their son's broviac.  I made a couple of wraps for Noah and have been working on a blog post with photos and step-by-step directions.  All of the doctors and nurses up here love the wraps and keep telling me I should sell them . . . but my feeling is that if you need one you probably can't afford one because all of your money is going for medical expenses!  My heart was burdened to just make the pattern and directions available for free to anyone who wanted them.

In talking with these parents last night I felt very convicted to give them one of the wraps I had made for Noah.  He only has two of them but I can always make him more when we get home, and since there are laundry facilities here it isn't a big deal if I have to quickly wash and dry the one he has left.

I was feeling pretty soul-weary last night and I can't tell you how much it blessed me to be able to minister to this little family.  It's my prayer that the wrap will help keep their child's line safe and help protect him from harm - and that it will give additional peace of mind to his mama! 

We had one of our very favorite, best nurses today and she did a lot to make things easier.  Noah is supposed to get IV benadryl every 6 hours around the clock, but it almost every dose has been given just a little bit late - 30/45 minutes late or so - which means he sort of slid into this really difficult schedule of 7 / 1/ 7/ 1.  He would get the benadryl at 7 PM, sleep for a couple of hours, then be awake and miserable until his next dose at 1 AM - which meant we were ALL awake and miserable until 1.  His nurse today slid him into our favorite schedule which is 9/3/9/3 - a nice nap at 3 PM, then asleep for the night at 9 PM. Jeff and I sure could use a good night's sleep and we are praying that none of the meds he gets through the night will wake him up once he goes down at 9.

Thank you again for all of your comments.  I was talking to a friend today about how often we don't do or say anything to people who are struggling - usually because we don't want to say the wrong thing.  It's NEVER an imposition or a waste of my time to read your comments, even if we've never met.  It refreshes, encourages, and strengthens us to read your encouragement, Scripture, song lyrics, or even just a note letting us know that you are praying for us!!!!  Slipping away to check comments is one of the highlights of my day, and Hannah and some of the other children read them faithfully too.  It is a huge encouragement to them to see the body of Christ coming together to help carry the burden for us. 

Blessings,

Kate

Still no answers

Noah is feeling steadily worse.  His fever spikes are getting higher and higher, and he is getting less and less interested in his surroundings.  When the fever goes down, he will perk up a bit and sit to watch a video.  He spent a little bit of time sitting with toys in the playroom and just now he felt well enough to walk down the hall to the fish tank, but overall it is clear that he is feeling worse.  He is also still experiencing the apparent abdominal pain.

The doctors continue to be mystified.  This LOOKS like a line infection, but his cultures are all coming back negative.  On the other hand, his labs such as his CRP are going up which would indicate a worsening infection **somewhere.**  We just don't know where it could be!  The infectious disease doctor repeated all of his cultures today and drew a number of additional labs.  It's possible that this is a fungal infection as those take longer to grow out than bacterial infections.  It's also possible that it is a virus that he caught from the person who donated the blood for Noah's transfusion last week.  There are labs that can be done to test for a number of viruses, but the tests look for antibiodies to the specific virus.  Thanks to his IVIG last week he has other people's antibodies floating around in his system - if a test came back positive for an antibody there wouldn't be any way to know if it was Noah's or someone else's. 

All we can do is watch, wait, and pray.  I am VERY thankful that he is having at least some periods where he perks up.  He looked very scary earlier today and it was a huge relief that he wanted to see the fish this evening!

My mom came up for a while today followed by our friends the Rausch's so that Jeff could go home for several hours and spend time with the children.  It is a blessing to have friends that can come up and help with Noah or Mary Faith (depending on who needs me most at any given time LOL).

Thank you all so much for joining with us in prayer.  It is a beautiful thing to know that Noah is not at the mercy of some bacteria, and that we don't need to put our trust in doctors and nurses (even though they are wonderful!!!).  God sees and knows just what is going wrong in this sweet little toddler that He created - we just need to pray and wait for the answers to be revealed.

Blessings,

Kate

No big news

Very Sick AGAIN, being admitted AGAIN

Trying to get home tonight

Noah's transfusion went very smoothly, and while he was up and unhappy for about an hour last night, it wasn't nearly as difficult as the night before - thank you for your prayers!

The doctors who ordered the kidney scan and brain MRI each feel that any benefit to the tests is FAR outweighed by the serious risks posed by the sedation, so Noah won't be getting either test done.  While I would have loved to have had the information that the tests could have provided, I am very, very relieved that Noah won't need to be sedated.

The nurses are starting his IVIG which will take a couple of hours.  If everything goes according to plan, he will get an echocardiogram after the IVIG then be able to go home tonight once his TPN is finished. His TPN usually runs for 14 hours starting at about 8 - 9 PM, but it didn't get started until 2:00 this morning because of the transfusion.  It's being stopped for the IVIG and will be restarted when the IVIG is finished.

There are a lot of yucky bugs up here right now, and Jeff and I are both relieved to be heading home before Noah could catch anything!

I need to run and give a hand with Noah.  I'll try to update tomorrow.

Blessings,

Kate

Spinning our wheels

The War Was in Color

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Fed Defies Transparency and Refuses to Identify Bank Loans

Fed Defies Transparency Aim in Refusal to Identify Bank Loans

The Federal Reserve is refusing to identify the recipients of almost $2 trillion of emergency loans from American taxpayers or the troubled assets the central bank is accepting as collateral. Fed Chairman Ben S. Bernanke and Treasury Secretary Henry Paulson said in September they would comply with congressional demands for transparency in a $700 billion bailout of the banking system. Two months later, as the Fed lends far more than that in separate rescue programs that didn't require approval by Congress, Americans have no idea where their money is going or what securities the banks are pledging in return.