Selah update

Selah is in the ICU.  She is stable now.  they did xrays and she did not aspirate into her lungs which is a miracle with all the throwing up she did!    Still no answer to what caused all the throwing up.  They ran a bunch of tests and we ae still waiting to hear what they think is going on.

She is on IVs and has had a wet diaper so that is good.  Jon said she slept with one eye opened last night LOL  THAT is Selah!  She did that whenever she was in a new circumstance:)  She did it the first night with us.  To me that shows the spark of Selah:)

Her oxygen level is good but her heart rate is still high.  She has not had all her meds which is bothering me.  Jon is with her and he is asking for the doctor now to get that all figured out.

On top of everything last night some guy comes up to our fence and started yelling. He seemed to be asking how far to town.  We have a BIG dog so the guy wouldn't come in the fence We live out in the country.  I have no idea what was going on with him but I called the cops (and several neighbors- they all like to target practice around here!!)  .  And I got out my trusty pistol!  Made me feel alot better.  I'll tell you a secret I'm an absolute fraidy cat at night if I'm by myself!  I think it's because I'm such a sound sleeper and I have this fear of waking up with someone in the house.  I'm so brave when I'm up  but not at night.  So this is the first time I've been the only adult in my house at night. It helps that Steve is bigger than me LOL  This was one night I let them stay up and play video games LOL 

I'm so glad for my husband going over with her.  I feel at the end of myself and just didn't think I could handle being at the hospital with her without someone going to jail....   I hate to say it but I knew that it would be like this....a bunch of different doctors saying different things. not continuity of care...so very different than Strongs.  I'm a Southerner but I can tell you that health care in Florida is not the same kind of health care you will get up north (for the most part)   I'm not saying there are not bad situations other places but Florida is not a place you want to be sick in.  We learned that with Sam.  Now we have doctors we trust here but once you go to the hospital, who knows what will happen.  We saw such difference in NY and that's why we made the sacrifice to go up to NY for all of Sam's follow up care for his eyes, there was such a difference over all.  Not just is our doctor amazing but the whole team approach was so good and reassuring.  Just talking to my husband on the phone made me angry that they hadn't yet addressed her high heart rate issue.  The nurse said that her meds can't be given through the gtube with her being sick....DUH!  But I said they needed to call pharmacy and get the same type of meds (different names) that can be given in the IV....not rocket science......  She said the doctor didn't want to change the meds she has been given.....I have a call into him right now.   She was on meds after the accident (before the gtube) for these issues and I know that she can be given them by IV.  So annoying.....  Health care needs to be about the patient and meeting the patent's needs and dealing with the underlying issues.  I'm worried that Selah will start storming like she did last night. 

Please keep Selah in your prayers.  She has been so stable, I really feel this all has to do with the whole gtube issue from last week.  She may have a little bug none of us are sick, she hasn't been around anyone other than we went to the doctor's office but we stayed in a hallway with her and she stayed on her gurney or wheelchair.  They didn't even move her onto their gurney in the exam room.  I don't even think a child passed by her and certainly no one touched or.  So since she has had little exposure to anyone, I think it comes back to the gtube......which makes me upset that she had to endure anything else! 

Please pray for Selah she is very sick!

Selah is very sick ~ had to call the ambulance. She couldn't keep any of her meds down and then had dark gritty stuff coming out of her mouth maybe her trach too...her oxygen stats are down and her heart rate is high. Jon went with her to St Joe's in Tampa Please pray!!! As they left they asked about a DNR order!!!! scared the crap out of me!

Please pray for her, I think it is either a bug or there is an issue with the gtube.  When it was replaced with the other tubing, the doctor put it in deep.  When we saw gastro on Friday that doctor pulled some of it out.  Every doctor it seems tries to cut down the last one and say how that one did someonthing wrong...who knows.   Since then we've had issues with a bit of a spit up and today it has progressively gotten worse. 
I'm scared and angry that someone messed up something in her gtube.....

The EMTs were ones who had come on time for Sam and on the way out of town, they picked up a guy from our church who is an EMT.  That was reassuring!!!

Day 97 Fish Oil Study

Selah had a good day again.  Starting last night, she has seemed more active.  "She is moving her head around more and seeming to pay attention more.  Our Sat/Sun nurse hadn't seen her since last weekend and he immediately commented on the change!  YEAH!  I love to hear things like that!    At the same time she seems a bit more agitated.  But that is not a bad thing in reading over coma recovery.  Her heart rate has just stayed up a little higher than normal. 

He suggested getting her a mobile (like you put over a crib) I went and got one but it won't fit the railing on the hospital bed.  I also got a "princess" chair for her that gives her back support but makes her hold her head up more.  I'll take pictures tomorrow. 

I went for a massage today and to the library (my favorite place in the world!)  I love libraries.  For me a Nook or a Kindle will NEVER be the same as a book.  I have no desire for any of those new fangled things LOL  Give me a good book and leave me alone and I"m happy!

So a quick update tonight, more tomorrow and hopefully some more pictures!

Please keep praying for Selah, we feel like we are seeing glimpses of SELAH again.  That was gone during the time we were at the rehab.  She went back inside herself but now she is home, there are so many little changes.  She has remained flexible although tonight she is tighter and seems mad but it is in her arms which have had full range of motion so I'm not too worried, I think she is just upset some. 

The lady who did my massage is coming next week to do one for Selah if it is ok with the doctor.  I think that will be good for her. 

Day 96 Fish OIl Study ~ First Doctor's appointment

Well we had a busy day today!   We started with Sam, Sarah and Selah having their Physical Therapy and Speech Evaluations this morning at home.  They had all had evaluations in July with this therapy group but since it was more than 6 months we had to redo them.  Sam has learned  new skills, he can walk up stairs and climb into his car seat:)  Sarah's legs/feet are in a much better position than they were before.  Her feet tended to point inward and she'd step on her feet if we tried to walk her.  She does that less now.  She got to walk in the gait trainer and had a good time.  She also responded well to the speech therapist and would indicate by clapping her hands that she wanted to continue playing! 

Miss Selah did really good!  She was evaluated from head to toe by the physical therapist.  The PT was able to get full range of motion in her arms/elbows/hands and wrists.  One shoulder was slightly tighter than the other.  We woke Selah up and without even the benefit of being up and letting gravity help her knees to bend, the PT was easily able to bend her knees and get 40% range of motion.  She also was able to get some range of motion in her ankles.  If she had had the evaluation in the afternoon, we are sure her ROM would have been higher but that is higher than anyone has gotten since NY (I"m not even sure that they got that kind of ROM in NY.  It will be interesting to read the report as I was in and out with all the little ones. 

We had ordered a wheelchair but the company never sent it so we cancelled the order and will do one with the therapist's help so we can get exactly the one she needs.  We are using a loaner one and it is not very comfy for her nor does it give her the right kind of head control.

Then it was off for another ambulance ride.  Her nurse and I both went.  We had the nicest EMTs again.  We seem to get lucky with really sweet folks.  When we got to the gastro's office we were told it would be over an hour wait!  She was on a stretcher, then the EMTs weren't allowed to stay that long so we were sitting in a hall with her because we were afraid to go in the waiting room, afraid she'd get sick.  The nurse and I both were getting a little ticked off, usually according to the nurse and the EMTs most doctors will take into account the child's situation and the the fact they are there on an ambulance...  Finally we went in and I have to say we both liked the doctor.  He had some great ideas and spent some time with us.  We were thinking they were going to make us wait for a 5 minute appointment but it wasn't like that. 

Selah has gained 13 pounds since the accident.  That is alot of weight in less than 6 months.  While we are glad she has had NO issues with her feeding....but she can't continue to gain at that pace!  The doctor was able to give us some samples of a formula that is more plant based with veggies being a big part of it.  He also is one of the few doctors who are all for the family blending their own food and giving it to the child.  She'd have to have a much bigger gtube button as she is on the smallest one and that would involve a small surgery but it is probably something we'll do in the next few months.  So we liked his innovative ideas alot and it was worth the wait.  Next time tho' they will schedule us first thing or right after lunch so there won't be any waiting.

Over the years we've been so blessed to have special folks who worked with Sam.  He had the best ever speech teacher that we all loved.  I prayed that Selah would be surrounded by folks who just adored her like that and I have to say our 4 regular nurses do, especially the one who works most day shifts.  She is so into Selah and wanting to meet her needs and help her to reach her full potential.  It means so very much to us!  You have no idea what a blessing this lady is!  I thank God for her and for all of them!!

So a long day for all of us...

Then I came home and cooked a Mexican pot pie:)  It was so good and easy!

a pound of meat ( I used low fat turkey- 1 gram of fat)
a can of Ro-tel tomatoes with chiles
package of Taco seasoning

brown the meat and add the seasoning and tomatoes, cook well

Line a casserole dish with the big pastry sheets (i used the pepperidge farms sheets or you can use a pie shell)
Put the cooked mixture on the sheet, sprinkle a handful of Mexican cheese on it and cover with the other pastry sheet ( or 2nd pie shell)
Cook on 400 degrees for 20-30 minutes or until light brown on top...

serve with Yellow rice and salsa and corn

You can put corn or black beans in the mix but some of my kids wouldn't eat that....

I served it with angel food cake ( from Publix lol) and fresh strawberries and felt like Martha Stewart!!!!

Very productive day!  Even for Steve:)

 

Steve  got his school books yesterday and got started on his schoolwork.  He will be working weekends and through the summer.  This is not even all of his books, some were left out and we are waiting for them.  Shad's books came into their school and we'll pick them up on Monday. 

Day 95 Fish Oil Study ~Life is short...eternity is long

Selah continues to be relaxed.  Her nurse got her up today and we gave hr a bath.  Quite a job!  Can't wait till the bath chair that one of my readers is sending gets here!  She was nice and clean and I put her on a new outfit.  She was outside quite awhile then we turned on Sesame Street for her and she seemed contented   A friend of ours had given us her old big screen tv and it is the perfect height for Selah to sit in her wheelchair and watch!  She must feel like she has a front row seat!   She is asleep now and her hands are completely open and relaxed.  I tested her knees when she was falling asleep and the tone was great!  Without trying, I could probably get a 50% range of motion or better.  I really didn't try hard since she was almost asleep and I didn't  want to bother her.  It is just unreal!

Tomorrow Sam, Sarah and Selah will have reevaluations for PT and Speech here at our home.  The agency that was going to start working with them in their office offered to come to our home and do it!  Next week they will all have a reevaluation for OT also and we hope to get started soon!

Selah has an afternoon appointment in Tampa for Gastro and he will reinsert the new feeding tube.  It came in today.  She has done fine with the tubing that was put in at St Joe's but it's best to have th right one in.

Today we got some very sad news.  A friend of ours, Ray Wiley,  passed away unexpectedly last night.   Ray and his wife had filled in for Jon at our church when we went to Ukraine and when we were in NY.  He actually led a prayer service for Selah a few nights after the accident.  He served as the head of the Urban Bible Training Center here in Tampa.  He and his wife, Jo, served for years in Eastern Europe as missionaries.  They had a heart for adoption, for our girls' adoption and for other families also.  He was a faithful servant of God.  We are sadden to hear of this but I have no doubt in my mind where he is tonight.... He spent his life serving God.  After I heard the news, all I could think was "he was a faithful man"  He didn't look for the praises of men, he knew who he lived for.  They have faithfully prayed for us and for Selah.  They have helped us out so much at our church, we had hoped to spend some time with them one day....well now that "one day" may be a little ways in the future but what a blessing to know that we all will meet again....

So reflecting on his death, makes me want to LIVE for God with everything in me.  Ray was a wonderful example of someone who was ready.  He lived his life ready  and he worked for God till the end.  Some would say "well he died young, what kind of God is that to let a good man die in his 50's?"  I don't have all the answers but I bet Ray does now!  I don't mean that flippant either.  I know we all want to hang on to life as much as we can but I think when our time comes, if we are ready to meet God, we will wonder why we were so afraid of death in the first place.  Also I know that even if a person lives to be 100 years old, that is nothing in the light of eternity.  Eternity is forever.

Have you ever, for just a second, grasped the concept of eternity?  I have, for just a split second, and then that understanding is gone.  But that hope of eternity is what keeps me going from day to day.  It's not some silly false hope but it's a real hope that beats in my heart.  Sometimes in the day to day, nitty gritty of life, that peace sweeps over me that this life is just a vapor...soon it will be gone...we will stand before God.

When I told the boys, they were shocked that someone they knew had so suddenly.  I used that time to remind the boys, that no one is promised tomorrow and we need to live with a repentant heart.  And I'm reminding you all of that too.  I believe Ray would want everyone of you to make heaven your final destination   I know I want you all to!  The bible says that if you call upon the name of the Lord, you will be saved.  Just ask Him to forgive your sins, and then keep in relationship with Him by praying daily and reading the Bible.  So I just want to encourage you to do that if you have not already done so.

Please keep his wife and family in your prayers....thank you!

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 did....as 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 in...you 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 stories...it 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 it...it'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!

Day 93 Fish Oil Study ~Things are great!

 

Selah asleep tonight LOOK at her hands!

 

Close up of her hands!

 

Selah had another wonderful day:)  She is doing picture perfect!  Her tone is remaining just like we like it in her upper body and is still good in her knees.  I took these pictures tonight of her relaxed and asleep.  This was how she was lying in her bed.  Her hands were loose and open.  The improvement is unbelievable!  Just think we were trying to put her hands/arms in splints to keep them from drawing up just  last week!  This is a HUGE change!!!!   Today we gave her a bath...interesting....(thank you all for the messages about helping with a bath chair!  A person offered her one that her child outgrew, so hopefully we'll be able to get that soon)  She was up all day, she went outside and was very content.  One of my "besties" came over and Selah showed off and swallowed for us:)

 

I had a really good day with my friend Kandi, she and I have spent hours upon hours walking thousands of miles together over the years and discussing the state of the world.   We logged up to 7 miles a day on our best days:)  Today was the first time we have been able to get together since all of this happened and it was quite emotional for me.  I cried off and on during the day.  Luckily my friend is a "crier" and she has always wanted me to be more emotional...LOLOL  she got her wish.  When I saw her I sobbed. We went by our kids' school (where the boys had gone for years) and I just bawled.  We went to the therapy office to pick up Sarah's walker and I cried...everything was a first and of course the last time I was at any of those places, Selah was with me.  Since I'm not much of a crier, it's a bit hard for me to understand all these tears but we were talking and maybe it's just having been gone from our familiar places for so long and having gone through so much, and then coming home and Life is NOT the same Life as we left ....has overwhelmed my emotions.  I don't know.  But I know not to waste any time on make up for now!  LOL

 

 

We picked up Sarah's walker and she loved it!

 

 

Go Sarah!

 

she loved it!

 

Sarah doesn't walk, she was kept tied down in bed so she never had the chance to learn but is is obvious she will walk one day.  She really enjoyed the trainer but will need some work to strengthen her legs.  She has come a long way from the day we met her. 

 

 

I think this picture is so funny, Sarah always looks so intently at faces.  And this is our oldest child and our youngest and you can see there is quite a span of years there:)

 

 

Thank you for your prayers PLEASE keep praying for Selah.  We really don't understand everything that is happening but it is all good.  Pray that she starts holding her head up more and swallowing more.  She really hasn't held her head up for any length of time since she has been home.  She also doesn't respond to visual threat all the time or if she responds, it is a delayed reaction.  visual threat is we put her fingers towards her eyes like we are going to poke out her eyes.  She should respond by closing her eyes every time) 

 

 

I want to tell you all how much I appreciate all your sweet messages.  I don't always respond to each one because it is somewhat hard to respond but I read every one (even the doubled ones lol)  and I thank you all!