Friday, 24 April 2009

  • aaahhhhhh!!!!!!!!!!!!!!!!!!!!!!!!!!

    Wow it has been a very very crazy time!  I am wondering when that will not be part of my vocabulary?   Some day it won't be.....not any time soon.  Where do I start? I will give you all the synopsis of our lives. I can't remember what I have written so here it goes.  Sorry if there are repeats.

     About 5 weeks ago... Joe called me on his way home from work like he always does.  He proceeded to tell me that he was let go from his job that afternoon.  I said yeah right.  He said that he would never joke about something like that.  After 11 years with a company, they said good bye.  We know in our hearts it was not because of the job he was doing but that they needed to cut some areas that were costing the company money........Molly.  The company was "self insured".  That meant all of the times we are in the hospital we cost them money.  Molly had already met our deductible for the year, so they were paying in full for everything from here on out for the year.  Molly was costing them a lot of money.  She always has but her airway reconstruction couldn't have been cheap.  We were going about every week to follow up with a scope.  That meant they had to sedate her. $$$

    We decided that we needed some time away. All of Joe's vacation days were always taken with Molly's stays in the hospital. We hadn't been anywhere since she was born three years ago. We went on vacation.  If you want to call it that?  Mom and Dad had a camping site reserved for Panama City the following week.  We took advantage and decided to drive there.  We packed up our vehicle....mom and dad's truck......and their camper.  We left after we went to cincy for yet another check up. For those of you who don't know.....my family has gone there since I was in kindergarten.....a very long time ! =)  We have had very good memories from there.....going to the beach, riding bikes all over the place, going for long walks along the beach and around the point, fishing, hanging out at the campsite, talking to people from all over the country and world, campfires at night, cool evenings and warm days, big storms but lots to laugh about afterwards, and time with family and friends.  Well this is what we had invisioned for our trip but we had never been on vacation with two kids and a campground.  Our thoughts on our time there......never again until the kids are older and we are better equipped for chaos.  Overview of the week....tent, camper, lots of rain, sand and a kid with a trach, 7 month old getting teeth, daddy with bronchitis, mommy with sinus infection, 3 yr. old that doesn't want to be cooped up in a camper for 3 days, only mommy & daddy can hang out with molly b/c of her airway, more rain, unrealistic thoughts about taking long walks on the beach, leaving the campsite only 2 times other than to go to the bathroom, and lots of arguments.  It was chaos.  We finally decided after the weather report told us that the next two days were going to be rain that it was time to go home.  We were very appreciative of our friends and family that tried to help with Molly and Jonah but it was all too much for us to handle.  We met up with a former nurse of Molly's who lives in Alabama.  The top of the mountain that she lives on was exactly what we needed.  It was wonderful. She has no t.v. or cell service.  We were actually in a quiet place for more than two days.  We loved it.  Molly played with the goats and had a blast.  Cindy walked into her house and dumped the bowl of rocks and treasures on the floor and told Molly to have at it!  We loved it and are trying to do that at home. (Once we are there for an extended period of time.) Less stress about what everything looks like and what others think.  We have way too much stuff in a house that shouldn't hold all of it.  We are going to try to downsize our stuff and declutter.  I am sure that as the kids get older that will become easier because we won't have all of their toys laying around.  We are going to go through stuff a little at a time.  Lots of garage sales and donating to come.   (The child life centers at Riley are always taking new or gently used books or toys for the kids to play with while they are staying in the hospital.)We got home late Friday night/early satu. morning.  It was a very nice end to our crazy trip. 

    Part of our craziness is that molly is having nightmares.  She has since she got her airway reconstructed.  She will go to sleep in her bed but end up in ours after she wakes up in the middle of the night.  All the way down and all the way back to our house on our trip, she would fall asleep in the car but get scared that we were taking her to Cincy.  I spent most of the car ride facing backwards with her fighting me because she thought I was going to put her to sleep for another procedure.I was just trying to suction.  It was very stressful for all of us.  the kids have never been in the car for more than 2 hours.  That is enough for me.! =)  I don't want to do any of that for a very long time.  =)

    When we got home, Joe had a job interview.  YEAH!!!!!!!!!!!!!!!!!!!!!!!!! That went very well and he got it!!!!!!!!!!  It was all in God's timing.  He was able to get two months severence when he left his other job.  He was only off work for about 5 weeks so we took the extra money and got the kids a play set.  Molly has been cooped up in our house for way too long and nothing to do outside since the tornado.  Our grass is finally coming in so hopefully it won't be as muddy here when it dries out.  She is dying to get out there! Joe started his new job last Wednesday.  He enjoys it and will be working some overtime coming up.  He enjoys the company and the people he works with.  We have always said in God's timing.  God didn't want joe to go anywhere else... anytime sooner.  Let me explain.  He took his resumes out to quite a few places, but most weren't hiring.  The survey field looked slim.  This company is actually busy and had thought about hiring someone but they weren't ready yet.  When he took is resume in .....it was the perfect time. =)  thank you god!  They said they would get back with him within a couple of weeks....they called him two days later.  God is Good!

    Last friday Jonah started coughing and we could tell he really didn't feel very well.  Overnight his cough started sounding really rough.  He had a slight fever the next morning, so I took him to the medcheck.  They said clinically he looked fine, just a cold and there was nothing they could give him.  We have been giving him two treatments a day with the nebulizer and vicks on his feet....it really does work!  A week later he is still hacking up a lung but on the upturn!

    Molly, Nana, & I went to Cincy for yet another scope to check her airway.  This time we went on Sunday night. Her procedure was at 7:30 a.m......we had to be there at 6.......not an easy task for people who love to sleep.  Molly is a definite sleepy head!  We had them give her some darvoset? or versed.....I can't remember which to calm her before we went into the induction room.  I think we will do that everytime from now on.  She didn't scream(if that is possible?) or hit me this time.  It did take her a lot longer to come out of the anethesia but it was worth it.  They had her stay for observation.  She is doing so well that they downsized her trach to a 3.0.  her airway is 3.5, so they wanted to go a bit smaller and try a speaking valve.  We had to try the valve and do a pressure test.  It is really neat how they do that.  Molly's pressures were a little high so they drilled two holes into the valve.This allows the pressure to go out the side and she can still talk.  This valve works in certain way.  The valve only allows air to go in and not out.  She has to pass the air past the trach.....hence the smaller trach.....and through her vocal cords.  This will eventually allow her to talk.  She refused to try the valve.  I tried it even when she was asleep....they said that was o.k......and she took it off and handed it to me.  She gave me the "what do you think you are doing?" look.  Overall, they were very pleased.

    ***********side note.....every once in a while we find someone that really thinks they know our child better than we do.  This happens more at a teaching hospital like Riley downtown or Cincinnati.  We love both hospitals, but sometimes the resident "who thinks he knows everything" is present and should be put back into his place.  While in Cincy, Molly was having trouble breathing over night.  I suctioned about every 5 min. for about an hour.  Regularly, she is on a two times a day schedule for her treatments but every once in a while she needs one in the middle of the night to get her through.  Because she was having trouble, I went out and asked the RT if he could give a PRN treatment.  He said he would check.  He came in and started to suction.......I asked if he was going to give the treament.  He said the doctor "resident" told him to come in and suction.  It was 3 a.m and I hadn't slept most of the night.  I was sleeping curled up at the end of Molly's bed....not so comfortable.  I was very irritable.......poor guy......I told him that she needed a treatment and to tell the doctor that I had been suctioning for the last hour.  If he wasn't going to give it I would.  O.k. Mother bear came out and I was going to do what I knew she needed.!  I wanted to go out and strangle the guy!  I am not an idiot.  I brought my daughter home on a home ventilator that he probably knew nothing about and would never know anything about.  I can tell when she needs a treatment and she needed one a.s.a.p.    O.k enough ranting.....had to get that one off of my chest! *********************

    We brought molly home on Tuesday morning.  She was a bit lathargic but I thought maybe that was the lack of sleep and the new trach size was signficantly smaller.  Maybe that was her issue?  She is usually very very busy!  She doesn't stop until you tell her she has to go to bed.  She was laying around all afternoon.  I had been keeping an eye on her.  She was requiring more and more suctioning.  About every 5 min. again.  She wanted to lay down on our bed....never happens during the day so that was my clue.  I took her sats.....she was at 84%.......normal is 98-100. Not good.  Her fever was 102.8. Heart rate was 150 asleep, and her breaths per minutes was 60.....not good at all!  I changed her trach back to the original size....4.0.   I called Joe and told him to meet me at Riley North.  He asked if he could come home and go with me.  I said no and gave him her info.  He said he would meet us there.  I called mom to come with us.  I can't drive Molly like that by myself.  She needs too much suctioning.  We got to Riley about 7:30p.m.  I feel blessed to be in a place that takes us seriously.....not that cincy doesn't(the main people are absolutely wonderful there)....but this was serious.  Joe walked in with her.  They saw that she had a trach, heard that her sats were in the 80's and everyone at the desk dropped what they were doing.   Stopped working with who they were working with to help get Molly back to a room and get treatment started.  We bypassed all the usual routes and got her back to a room.  Treatment right away, oxygen, on monitors, the whole workup.  The doctors were really good.  I do hate sitting in an e.r. though.  It takes forever for everything.  Since Molly has had her surgery, she is deathly afraid of getting an i.v. and needles. Every time she gets into the car she signs hurt and want to know if she is getting an i.v. This trip is no exception.  They had to do bloodwork.  Try holding down a three year old that knows the routine.  She sees the tray they bring in and freaks out.  Joe had the privelige this time.  They only stuck her for the blood and didn't give her an i.v.  Chest x-ray.  the blood work showed that she had something going on but nothing crazy, xray showed her lungs look good, but yet she is still having trouble breathing.  She was sating 91 and on 30% O2.    They did admit her. The i.v. came at 1:30am.(all I could do was talk, pray, sing and comfort her....none of which worked)....of course she was asleep when the wanted to start it.  It took 45 min. to get it all together.and working.......Then 24 hours later she had the i.v. leak and she had to have it retaped!  aaahhhhh!  The one thing she fears the most is the one things they have had to mess with the most.  She has been on the children's floor since Tuesday.  I will be honest because that is all I can be right now.  This sucks!  It is all a blur.  It is beautiful outside and Molly would much rather be outside than stuck in a bed worrying about the i.v. in her hand.  I can't remember what happened on what day.....heck I can't remember what day it is.  I have been wearing the same outfit all week.  I borrowed a scrub shirt and have been washing the extra clothes each day.  Molly has really been struggling.  Last night was the worst.  She coughs sooooo much and it is a tight cough.  The treatments help but not like they should.  Tonight she is asleep at 10p.m. but last night she really didn't fall asleep until 4 a.m. and them back up at 7.  We both hit out breaking point.  She was tired of coughing and people messing with her....to be understandable.  I was trying to suction and she kicked me in the face.  I had to walk away because it really hurt.  I started crying and walked out of the room.....I told them that someone needed to sit with her.  I needed a moment.  Of course, the whole time I am gone she is crying and red in the face....coughing and getting herself all worked up. She was signing mommy the whole time and very very worked up.  I went back in.  I told her that I was sorry that I left her and sorry that she was scared.  I was trying to help her. I changed her trach hoping that might help.....it didn't.  She signed music and I sang her to sleep.  yet three hours later it all started again because she started coughing.  I kept thinking and cont. to think.....I just want her to be a kid!  Run, play, have fun.......come in from playing covered in mud and loving every min. of it.  She doesn't deserve any of this.  Hasn't she had enough.  they moved her this afternoon(of course they needed to do it while I was taking one of my two showers of the week) to a room in the ICU....sort of.  She is here b/c they needed a room next to the nurses station for a baby.  This way if Molly does require more oxygen she is already here in the icu area.  The policy on the floor is that if a child needs more than 50% o2 they are to be in the icu.  they can treat her better as far as a respiratory stand point here.  Overall they really don't know what is going on.  The pulmonogist said that she sounds and acts like a kid with a severe asthma attack.  everything else looks good.  No pnuemonia, no rsv, no other infections that they can tell.  She is here because she requires oxygen and their assistance for treatments.  Sometimes it is easier just to have something they know they can treat.

    It was nice tonight.....a friend of Molly's came to hang out with Molly.  I needed that shower. She helped them move Molly....thank you sooo much God for having her here during that time b/c that would have set Molly off even more if you hadn't been here!.....of course Molly freaked out when they moved her because I wasn't with her.  Molly won't let anyone leave the room.  The friend came so I could take that shower.....I also was able to go out to the patio area and eat dinner.  What a thought outside nonhospital air! =)

    ****************another side note*************Joe has tried to work his new job, take care of Jonah, the house and mini, all while worrying about Molly. I haven't seen Jonah since Sun.  He is sick and I can't take care of him. I am truly torn.  Joe is torn b/c he misses his little girl and he can't be with her. Poor Jonah has been passed around to soooo many people.  Joe has to go to work. We can't afford for him to lose this job.  I have been calling people to take care of him.  We feel like we are just pawning him off of people but there is nothing else we can do.  We all just want to be at home and lock ourselves in.  Not let anyone or any germs in.

    So when does life slow down?  I really would like to know.  Joe and I have only been married for 5 1/2 years.....It is really tough to connect when you don't see each other.  We miss each other and the nonchaos.  We just want to be a family.  We want to go to the park and enjoy. Spend time together. Watch our kids grow up while we are sitting on a bench together.  Is that an illusion in our heads?  We truly hope not.

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