A Glimpse into Mendollyn's Crazy Life

broviac out

**Sad and unpleasant post.  Skip to paragraph #4 if you don't want to read the awful stuff.**

We got an IV in and the broviac out last night.  I'm not sure how to describe the experience other than "nightmarish."  Noah was in the treatment room screaming for help for three hours.  His poor little veins are so weak and vein after vein kept blowing.  It wasn't anyone's fault - the nurses were great.  After several attempts (about an hour and a half) the day shift nurses decided that everyone needed a break so they let Noah go for a bit while the night shift nurses got report . . . then we had to go back in and keep trying.  It took eight long tries to get an IV which ended up being in his foot.  This isn't a very stable place and we are all praying that the line will hold - no one is sure that there is anywhere else to try.  (He had already lost some sites due to blown veins from blood cultures).

The broviac was supposed to be the easy part - since the cuff was out the surgeon assured us that the line would slide right out.  As a result, he decided to do it in the treatment room following IV placement.  Unfortunately the surgeon was terribly mistaken and it took a very long time to literally rip the line free from his chest wall.  He had a lot of local anesthetic which didn't seem to help.  After a very short time the nurses and I all insisted that he stop and get Noah some morphine.  The morphine only seemed to help a very little bit.  This absolutely should not have happened to him, but it was essential that the line come out as Noah was getting sicker so quickly.  Once we realized how horrific it was, we were commited and needed to get the line the rest of the way out.  I wish so much that somehow we could have known and insisted that it be handled differently, but everyone was sure that line removal would be easy.  I think he has had so many small traumas to the line that he just developed a lot of adhesions and scar tissue. 

The second round in the treatment room was another hour and a half +.  We took Noah for a little walk afterwards to help him settle down, then got him into bed.  His IV meds hurt his foot (burn the vein) so we've had to slow everything way down.  He woke up for about 30 minutes this morning then went back to sleep until after 1 PM today.  I just can't imagine what he is thinking/feeling about last night.  I don't know that I will ever get over it.

The good (possibly great) news is that Noah hasn't had a fever since late last night, AND his CRP(infection marker) has dropped by almost half!!!  The doctor was firm in saying that Noah isn't out of the woods and that this is no guarantee that he is infection free yet, BUT this is the very first positive news we've had in a week.  If Noah doesn't spike a temp in the next 72 hours, then he will go into surgery Tuesday for a new line.   If he does spike a temp, the 72 hour countdown will start all over.

I plan on posting more later, but here are specific prayer requests for now:

-- Noah to be fever and infection free

-- Safety for the IV

-- Comfort/relief of IV pain and pain from the many large bruises due to blown veins and of course pain in his chest where the line was removed

--Pray for Noah's little spirit (and mine) to get relief from last night's trauma.  I'm concerned about the impact of it all - the whole three hours he was looking at me and begging me to help, and I didn't (couldn't).  I don't know if there is anyway to make him understand that we weren't trying to torture him.  I'm praying that the memory will fade quickly without leaving a mark on him.

Thank you!

Blessings,

Kate

Friday Update #2

Pulling the line

I only have a minute here, but I wanted to let you know that they are going to have to pull Noah's line today.  He just keeps getting sicker and he can't continue like this.  The vascular team is going to do ultrasound studies to see what kind of access he has left in his chest, then the surgeon will remove the line.  Noah will get an IV put in which means he can only get a very light, lower-calorie version of TPN until he gets a new broviac.

He will need to go 72 hours with no fever before they can take him back to surgery for a new broviac.

If he continues to have these high fevers, then we will know that the line was not the culprit.  The next step would be to do a CT of his abdomen.  Because of the grave risks posed by the sedation, a CT scan is actually riskier than surgery and a new line.  The CT scan would look for bacterial overgrowth in the gut, an abscess, etc.   He is acting like there could be some bacterial issues in his gut, so he is getting a new antibiotic started this afternoon - but even so the line seems to be the more likely culprit and removing it is still safer than sedating him.

Please pray for all of this and particularly for the IV.  It can be very, very difficult and painful for him to get an IV.  They'll be using ultrasound to guide the nurse who places the IV.

I will update more when I can get back.  Please ask others that you know to be praying. If anyone from the mito list and/or TPN list is reading, could you please direct the list to the blog?  I don't have time to update the lists I'm on. I know there are some who update most of the other lists I'm on.

Thank you all, dear friends, for your comments.  I needed them last night.  It's never stalking LOL and we would never mind hearing from you by phone - I have my cell up here now and the number is 864 992 3193.  If it isn't a good time, I just won't answer but I will call back.  :-)

Blessings,

Kate

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

Busy day

Last night's bonfire was SO much fun!  We never did get a scarecrow done, but the children carved some amazing pumpkins.  It was quite a sight to see 6 children all pulling the stuff out of their pumpkins.  There was a lot of squealing and wild laughter, of course!  Noah clambered right up on top of the table and enjoyed sitting in the center of the action.  Sarah did a cat face, David did a cross in a heart, Timothy did the Superman logo, Matthew did a  polar bear, William did a hanging suspended heart, and Hannah did an American flag.  The little ones also spent a good bit of time gluing pretty leaves onto paper bags for the luminaries.  The leaves stood out much darker than the bags and it was really lovely! 

We had a good turnout and Noah had a GREAT time!  He fell asleep toward the end, but not before he spent a good bit of time playing with his buddies in the yard.    It is always such a joy when he feels good enough to really play and act like any other toddler.

Today has been crazy busy.  We ended up going out to eat for lunch because one of our favorite restaurants had a "kids eat free" special today - we don't often pass up deals like that!  There wasn't space for a party of ten so sit together, so the four older boys (8, 9, 11, and 14) sat at their own table out of sight of our table.  I'm sure the waitress was a little nervous, but before long we had all sorts of staff coming to our table and raving about the boys' manners and behavior.  We were proud of how beautifully they behaved even though they knew we couldn't see them.  I really appreciated Jeff's offer to do lunch out since we had sooooo much more to do once we got home. 

Jeff rented a chainsaw yesterday to cut down some brush and trees.  He wasn't able to finish before the bonfire but since the saw isn't due until tomorrow, he and William spent this afternoon cutting down more dead trees and slicing them into firewood.  There were tears from the younger ones . .  . apparently one of these trees was VERY special to them for some still-undefined reason.  Once I reassured them that we could make NEW memories with the tree as we enjoy spending time around the fireplace, they seemed to feel better.

I've been watching our local grocery store for a long time waiting for a buy-one-get-one-free sale on ground beef, and they finally had the sale this week!  Thanks to the sale and a gift card to the store, we were able to get 50 lbs of ground beef today.  I have a lot to do to get ready to leave tomorrow, and would have preferred not to deal with that today, but the sale ends Wednesday and it absolutely wouldn't be good stewardship to pass up the sale I'd waited so long for.  I've been cooking all afternoon to do casseroles, meatloaves, and bags of cooked beef for the freezer.  It really is a tremendous blessing to know that God has provided for all of these meals that we will have in the freezer once I'm finished, and it is good to trust Him to enable me to do this cooking as well as the other things I need to do today.  If it was easy, I wouldn't get the chance to grow!  (I do, however, need to admit that am SO glad to be a nursing mama so I have an excuse to sit down with Mary Faith and take a break for a bit here!)  

Mary seems to be feeling a bit better.  She was trying to crawl yesterday and fell nose-first on the track for our sliding door - her nose is cut and all bruised.  Poor little thing was unbelievably pitiful yesterday but her nose is much less swollen today.

Hannah is off for the afternoon (making the cooking project harder!!!).  Point of Grace is doing a concert at a church down the road, and they had a special time for girls before the concert - a Bible study, prayer time, etc.  Hannah had money for the ticket and a sweet lady from our church offered to take her to the girl's time, then out to dinner, then to the concert.  I really didn't have the time to do it so it was a blessing that someone offered - and Hannah was so excited about the entire thing.  I'm sure she is having a wonderful time right now.

I've got about 20 more pounds of beef to deal with, then finish cleaning the kitchen, do a couple more loads of laundry, cut Noah and William's hair, and pack.  Even though Hannah is my best helper, the boys are great helpers too and I'm sure it won't really take too long to get done and get to bed tonight.  I gave Jeff's cell phone number but it's actually better to call mine if you want to call us at the hospital.  The number is 864-992-3193.  Calls are ALWAYS welcome and encouraging.  If I can't answer the phone, I won't, and I'll call you back, so don't worry about calling at a bad time.  We will update when we can tomorrow.

Thank you for your prayers!

Blessings,
Kate