HOME

Sorry for delay in blog posts-my home pc internet won't load my blog and I don't have wireless internet at home, so I have to wait till I am out and around wifi... Need to get this fixed asap.

Thanks Jamie for the thoughtful package of goodies!!!  And to everyone else that has sent such nice words for our home coming.

Things have been going really well in the McGinnis household.  Lauren has adjusted fantastically.  Her sisters adore her in every way! 

We have been quite busy traveling to doctor appts... and getting her casts to repair her feet.  ut still, wonderful.

Here are some pictures...

 

and some with her sisters... (please excuse the outfit choices-these were random moments, lol)

July 18th

On Tuesday (12th) Lauren went back to Nashville to get more casts done for her serial casting to repair her feet.  She did super.  I was afraid it would be bothersome, but she really hasn’t shown any signs that they hurt...

It was a nice week transitioning Lauren into home life.  Very quiet because her sisters were in Georgia visiting family (“Aunt” Camp).  They had a blast visiting with their cousin-going to a roller skating birthday party, aquarium, swimming, getting a pedi, jump houses....  So, when we were reunited on Saturday, the girls zoomed right past me straight to Lauren. 

Very nice to all be home. 

Moday July 11th

We were discharged Thursday afternoon.  Woohoo!  Getting home was wonderful, however turning back around the following day because of a shunt malfunction was not.   My middle child, in a classic tantrum style, stomped her foot down and yelled, “We never get to keep Lauren at home!  It’s not fair!”  I agree.  

Late that afternoon we were admitted into er.  After imaging and tapping the shunt they were able to determine that the shunt catheter tip was clotted.  After much persuasion they injected 1 dose of TPA.  Believe it or not it worked!!!!  The next morning her head felt great.  They kept us a day for observation and we were back home Sunday evening.  Ahhh, home!!!

Homeward Bound

We are getting ready shortly to be heading home!!!  Lauren gained weight last night and is eating great.  Doctors are having us to check in for weigh ins with local pediatrician. 

We are so stinking excited!

Lauren is 4 months old today!!!  Oh, happy day.

180*

HOPE

 

YOU HAD

A WONDERFUL

INDEPENDENCE DAY

FROM OUR FAMILY TO YOURS XOXO

We had a great visit together this weekend.  I missed my family so much!!!!  It was super sweet to see the girls with Lauren again.

Peyton getting in some snuggle time

Taylor hanging out watching Lauren

When  they got here Saturday my husband looked wiped.  So, I took the girls out and about to some stores for about three hours so he could rest in the bed here in the hospital room.  I got back and asked him if he had a nice nap.  To which he replied, "Not with that IV pump going off every twenty, thirty minutes, people coming in and out..."  I looked at him and gave him a pat on the shoulder and said, "Welcome to my world, except it's 24 hours." heehee.  I loved the look on his face.

On Sunday they took Lauren off the antibiotics and fluids since her blood work and cultures were showing up negative.  Sunday turned out to be a pretty rough day for Lauren.  I had left with Taylor and Peyton to go to hotel to get a nap.  Which of course never really happened cause that's nearly impossible to do in a small room with two very active girls.  So, we left daddy with Lauren.  When we got back he was a bit frazzled, I guess Lauren kept getting sick on him.  Sure enough, after about five minutes of me being there she got sick again.  Needless to say, they put her back on the fluids. 

However, at about 9 that night Lauren's behavior began to get better and she was able to keep her night time feeds down.  She woke up Monday morning super happy, and stayed this way most of the day that she was awake.  She only got sick after one feed and was able to increase her feeds a little too.  The girls decided to give me a pedicure and daddy a new hairstyle!

 Today has been even better.  Made a total 180!  Spinal Fluid came back for a final result of NEGATIVE!  This is excellent news.  She is the happiest she's been since we've been to the hospital and is eating tremendously better, all while keeping it down.  I am so proud of my little warrior!!!!  Doctors know that the ileus caused Lauren great discomfort and was behind the excessive vomiting.  They are attributing her fever and soreness to possible virus, since nothing was found in cultures.

She got another casting today, this time purple...

Lauren lost a bit since we've been here, especially this past week.  So, we are going to supe up some expressed milk twice each day to try and get her back on the weight gaining cycle.  She has always, when feeling well, been an excellent eater and a little chunky monkey, so I am sue that she will be back to herself sooner rather than later.

We are going to follow up with a nutritionist and have her weight monitored by our pediatrician at home closely for a while.  I am not sure when we will be able to go home, but my guess is if she continues to do well, very very soon.  

I can't help but believe that her recovery had a huge part to do with the hundreds of prayers being sent up into the heavens for her.  We are eternally grateful!

I wanted to say thank you to a few people who have really helped us out the past 3-4 weeks while here:

Linda, Gina, Lyndsey, Marsha, Adrianna, Kacey, Keisha, and Sabrina.  It truly is a comforting thought knowing that we have such great friends that we can trust and count on in such times of need.  PS Thanks to Erica and Sheri for making a quick trip down here last week. 

Family Time

Waiting on my adorable big girls and their daddy to get here for the weekend.  I missed them something terrible!!!!

Blood work came back with no blood infection, as did the urine sample.  CT scan looked great also.  Waiting on CSF, super preliminary looks OK, but it honestly takes 24-72 hours.  I know of three times they have told me same day it was drawn, "Oh, it looks good.  Nothing to worry about."  Then a day or two later, "Well, actually something is in the CSF and it's an infection."  So, I really want to hit that 72hour mark before I celebrate that it's not in spinal fluid?

It's good that those results came back good, but still frustrating cause we still don't know for sure on things.  They took another abdominal x-ray earlier-waiting on that.  

Right now, she is sleeping.  She is sleeping too much-and I KNOW that this is usually not a good thing.  Who would have ever thought we wouldn't want the baby to sleep too much.  Funny.

Anyway, when I find out anything significant I'll post.  I'm going to try to enjoy my time with my family.  Hey, I may even get my husband to spend the night with Lauren in room, while "I" go to hotel with girls and get a full night of sleep! heehee.

Also, I wanted to again thank you all for following and being so dedicated to following this journey.  Your thoughts and prayers make such a difference to my heart and gives me some peace.  It just reminds me that I am not the driver.  I need to trust in God.

After shunt revision.  Taken Tuesday-looks tons better here than was.

Hello!

Tuesday in my 20 minute happiness time.  Didn't last long and came out of nowhere, but was worth every second seeing her like this.

My cast fro clubbed foot.  Put on Tuesday morning.  Will get one on left once picc line is out.  Changed once each week for 6 weeks.

Going CooCoo

Unfortunately to report nothing has really changed too much.  Just waiting.

So, they tapped the shunt today to rule out infections... before trying to move forward with determining treatment...

They currently have A) Blood culture, B) Urine culture, C) Spinal Fluid, D) Blood work for kidney functioning, and (just this moment) E) CT Scan

I have decided that beyond any shadow of a doubt it is quite possible to go crazy in a hospital.  Surrounded by four walls, that seem to get smaller each and every day.  What is that you are thinking?? "You need to get out of the hospital and take a break!"  That's a great idea-EXCEPT...  I can't stand the thought of Lauren laying in her bed feeling awful without being close to her.  My mind goes crazy obsessing, "What if she throws up and begins to choke on it and nobody notices..." (we're not on monitors now and yes, door could stay open, but????) etc...

I felt myself getting extremely frustrated again today.  "Let's just let the baby keep getting sick and wait-no matter how long..."  I know that this is not what the team is thinking, but this is absolutely what I felt like.  I just kept thinking over and over what is going on?

Her head feels great-not too much pressure.  So you can pretty much rule out malfunction.

It could be a shunt infection???  I don't know why, and I may eat my words, BUT I don't feel like it is right now.  My husband is putting money on this one though.

Sure the ileus can cause vomiting, BUT this much and ALL the time????

So, I made a list and  called doctors in...time for progress, cause this momma is about to have a waterfall shoot from my eyes and frustration shouting-seriously.

Some of the things I asked about was:

*Her weight.  She is not gaining and this bothers me.  She needs more calories in her fluids...something.

*How can this ileus be causing her to vomit so often and so intensely???

*Is it possible that she has begun a severe case of reflux...??? (the PICU team thought this may be possibility)

*She is sore.  I told them about this last night and again in rounds.  Lauren typically loves to be picked up and held.  Now she screams every time she is moved.  Especially when it involves her head/neck and changing her diaper or twisting her lower extremity.  This scares me.  WHY is she feeling this way????

*Her blood pressure keeps going through the roof.  Yes, she has a history of high blood pressure and is being medicated for that BUT why does my 3-4 month old baby have the blood pressure of an adult???  Right now, the last few times its been like 138/80 or 90 something.  It's been doing this off and on for 5 days or so.  This, has got to stop.  Needs to get under control.  Lauren has enough to worry about, we don't need to add heart/kidney problems to the list.

(Granted during all of this the doctor was very nice and understanding and listened and I believe going to take some action)

*AND a simple throat and ear examination would make me feel better.  Who knows???  (NOTE-They did examine-left ear OK, throat OK, couldn't see in right ear-going to look again later).

Doctor said that they first need to look at CSF results to rule out major things before they move on to figuring out what's going on.  So, I am waiting for those results...terrified for some reason.  Hopefully, nothing bad is there, but it's taking a while.  (See, this is where the hospital crazy is kicking in.  I'm beginning to obsess even more...)

I'm going to get off of computer for a second, try to breathe, and do some more waiting...  which will probably make me go even more crazy. lol.

So, I have edited this page a couple of times in last twenty minutes by adding new scans and tests being run... I think my "meeting" must have worked.  Hopefully I have something to report soon, and even more important that it's good news.