Wednesday, February 6, 2013

Day 94 Fish OIl Study~ Long day

Well after a wonderful perfect day ...last night at 10 pm Selah's gtube came out.  It has a little ballon to re inflate but it wouldn't hold the water so off me and the nurse went in the ambulance to the ER.  First we went to Lakeland but all they could do was put in a Foley catheter, to keep it open.  They did not have a g-tube her size.   Neither did we.  Why do you ask?  An extra one was not sent home with us.  I had called our pediatrician's office for an order to get one but they wouldn't give me an order and said to wait to go to the Gastro on Friday and let him do it.....I"m not happy about that...  It reminds me of the poem or saying "for the want of a shoe the war was lost" 

Then the nurse went to my house in a cab and I went off to St Joe's in Tampa.  I notice the driver is going way the long way...but "who am I to question???"    But I we drove to the wrong St Joe's...LOLOL  you know I was having to hold it in....

Luckily we did not have to go in through the ER or I'd probably be in jail tonight.  We get to our room and I am asked the most detailed questions EVER and yet then NOTHING was done for Selah!  Respiratory was not even called know a patient on a trach...needed a nightly humidifier....  I finally feel asleep around 5 am for about 1.5 hours.  Then her machine started beeping for low oxygen levels...  so many small irritating things happened, I will spare you the details.  I did speak to an administive nurse this morning and shared my concerns. 

I will say we actually got a no nonsense doctor in and she changed the tubing to a clear one that we could hook upmeds and feeds too.  No one in the Tampa Bay area had access to getting a gtube like what we needed.  It had to be ordered and rather than us have to stay in another day, we did this. 
Then we could go home since it is being mailed and the nurse can put it in tomorrow.

I did get lunch there and I swear they had the BEST chicken salad EVER! 

Selah did quite well except her oxygen level stayed lower than I liked dipping into the high 80's a few times, no matter what I did.  She tensed up some but not all the way and is doing lovely right now DESPITE missing 2 rounds of meds!

During all this I was keeping in touch with our home health agency so they knew what was going on.  At first it looked like we wouldn't need any nursing but then we found out around 10 am we could go and an ambulance got called for transportion.  I let everyone know and thought we would have a nurse (maybe not our regular one since she had thought that we wouldnt' be home) but I felt assured we'd have someone there.....NOT!

We had an uneventful trip home with some great EMS guys who enternaimed me with their gristliest was fun!  LOL  Then we were home and no one was here!  To say I was upset is an understatement.  I had communicated clearly and really felt in over my head with her new tubing and the whole confusion with feeds, MEDICINE (because the discharge papers were far from clear, all they did was list her meds NOT what they had given her!!!)   She wasn't in "distress" but she was not doing as good when we got home as she had been doing either.  I had had less than 2 hours of sleep, probably far less and I don't do good without sleeping.  My other kids needed me, Sam needed eyedrops....this is why we have nursing....

Let's say I shared my concerns freely.......

I don't think I'm a princess but I do know our family's needs are higher than most families who find themselves in our situation.  I jump right in and work with the nurses and want to be involved but this is new to me and especially when there are crises moments.  I don't have the confidence I'll have in a year or so right now.  There was alot to figure out and I'm still ticked that it was handled the way it was.  Our night nurse was able to come in at 4pm but by then I had called the hospital and figured out what they had given her and decided not to try and make up for any not given. 

On top of it, since Selah has a trach, we are supposed to keep a dedicated trach bag with ALL the things she'd need to be able to change one out anywhere~ like a "bug out bag"  ....for some reason the nurse last night (not our regular one emptied it out and filled i up like a diaper bag.  I had not idea till I was asked about a size of something and opened it at St Joe's.....  that made me so so mad!  Our day nurse had gone through it for me and made sure I had put everything in and it was so neat!  Now I can't find some of the things and that bothers a person like me to death!!!

The two things that scare me about taking care of Selah is her AIRWAY and her MEDS!  So in all of this both were a problem.  I like to know I can grab what i need, not that i have the greatest confidence in myself but at least if it is there... maybe I'll do it right!   AND the meds scare me now that I have to draw up the dosages.  I take it very seriously, she take some serious meds!  Not only are they serious, they also keep her stable.  That is a big responsibility to me.  I don't like excuses or "politically correct talk"  If you screw up admit, it without me having to point it out, and just fix it.  I'd respect you more and probably work with you much more nicer! 

For many years I worked as a probation officer and as a supervisor.  If I made a mistake or needed to take care of something, I just did it.  If someone I was supervising made a mistake (God help them) I did whatever I had to do to rectify it.  If one of my workers couldn't make an important deadline if I had to do it, I did it...  Ever since I've had Sam, I've been "amazed" at the lack of "customer care" in the health care industry, as well as social services, public school, etc....

All in all, I do give our health care agency a passing grade.  I really like our main nurses and think they are jewels!  But this is the second BIG situation that wasn't handled good in a little over a week (the first being our first night home!)  I have learned not to get vague nice promises...that won't be happening again. 

So let's just say that no one was guessing today that I am a pastor's wife....  really glad God still loves me....  This i WHY I named this blog "My REAL life"  this is's real, I'm real  and that's just how it is. 

I'm so tired but I know something about "jet lag" or  "hospital up all night lag" if you don't fight it, you'll have your sleep messed up so I'm bleary eyed trying to stay up till 10 pm.

So please pray for Selah that she will stay relaxed and that she won't get an infection from all of this.  Dr Lee had done such a great job on her gtube in the first place I just pray this won't mess up things!


  1. Hi there,

    I have been reading your blog daily since the accident. I am glad to see you have your sweet little girl back at home! I wanted to share a ling to another blog I read that has some great info on nursing, I believe they went through similar issues when they brought their daughter home too (their daughter is also trached). Hope it helps some, I can only imagine your frustration

  2. Continuing as always in prayer for you and Selah, Yvonne.

  3. Saying extra prayers for all of you tonight. It sounds as if you need them after your harrowing experience. Sending extra love, too, and will pray anytime during the night that I am not asleep.
    Yvonne, if you read this before 10 a.m. tomorrow, would you please say a prayer for me? For the first time in two years I am well enough to work, and I have an interview at 10 for a position as a per diem hospice nurse. I've done hospice before, and really loved it. I want this job more than I can easily put into words. If you could pray, I would be most grateful.

  4. I know Saint Joes. That is where I had to take my cardiac rated 6 year oldson to have dental work it is never easy it is a fairly big deal. He has had to have outpatient surgery for a tooth cleaning . Nice place to look at best hospital food ever. not to sure how I liked quality of we live in Interlachen that was a long way to go for dental work.I have since changed him to shands dental in gainesville as Saint Joes, well They just did not seem to get I am mommy I know my kid but they learned it LOL.sorry you had all this trouble. Will keep praying for Y'all. good luck .

  5. Different city but same situation with a feeding tube in an elderly neighbor of ours - took several hospitals, lots of training for daughter who helped and in the end they finally knew how to communicate to the hospitals. It's like everything in life - it all takes practice before anyone feels comfortable let alone confident. So it isn't just the little ones who have issues with these tubes. You would think in the medical world some things are universal but it is so amazing how trained medical staff can be so across the board clueless sometimes. You're doing great, Selah looks awesome too. Stay focused today and before you know it night will be here!!