I cant remember when it was but over the next two week ,I think it was within the first week,her inscision split open.The dr said he wasn't surprised by this because of how the wound looked before he did surgery .He wasn't concerned about it.
Over the next week the results of tests started coming in.We were on a schedule of meeting with doctors in Greenville.The first week after surgery we met with the surgeon then the next week we met with the ID doctor and we kept doing that for the next month.The first thing we heard back was the Hayden had a secondary infection.MRSA Staph. That word scared me,but after asking questions ,the doctors told me its really not that bad and it is unavoidable.I know there were people a bit worried about if it was contagious and that was something I asked the doctor ,if we should keep her away form other kids,but they said staph is everywhere,its at walmart and theres nothing you can do to avoid it.However he did say if we touched the wound directly or touch anything that comes out of it to immediately wash our hands.While we were in the hospital a sweet friend who I hadn't seen in years,her and her husband came in the night before surgery and brought us a huge bag of stuff.It was so thoughtful the things they had in,like a bag of quarters for vending machines and a journal to which she wrote that when her dad was in the hospital they would write down things the doctors said or funny things that happened while they were in.Well this was a perfect idea for me as I have such a hard time remembering what doctors say.So when the doctors came in and started telling us some results I wrote everything down,later I would go online and google what these things were.MRSA staph is a type of staph that is not treatable with certain antibiotics.So they did put her on an antibiotic called bactrum.
A few weeks later we got more results back saying that the first infection is what they expected it was,an atypical infection.I asked the id doctor where this came from and how she got it all she said was that it was something in the air that some kids just get.Not really avoidable but usually treatable with antibiotics however it does happen that kids have to have surgery to take it out.Usually after surgery its gone.
2 weeks after surgery ,a Tuesday morning,Hayden started complaining about her owie hurting.I decided to give her some of the pain meds they had sent us home with.I put her down for a nap around 11 that morning since her appointment was at 2 meaning we had to leave at 1.I woke her at one and put her in her carseat hopeing shed go back to sleep.I noticed she was warm but thought it was just because of her jus waking up.When we got to the dr they took her tempature and she was a whopping 103.Dr LaCroix also noticed a rash all over her body and thought it was a reaction to the bactrum she was taking for staph.She told me to stop giving it to her but wanted me to take a stool sample of hers and take it to the nearest hospital to us so they could test it to be sure.I had asked her if she thought it would be ok for us to take a trip to PA for a week,she said as long as the rash goes away she thought it would be fine.The next day I ran her stool sample to st lukes hospital which is about 5 minutes from my house.I was rather un-impressed with how much they made me do before simply handing over the sample to the lab.It took a lot longer then I thought it would and I ended up being there for about 45 minutes just to drop something off!But that seems to be how everything is going with this,taking longer then we thought.:)We headed up to pa that Thursday and stayed for a week.Hayden did really well up there but it seemed as though every day that second node got bigger and started looking more and more like the first one did right before it burst open
We drove home the next Thursday and that Wednesday we had an appointment with the ID doctor,Dr LaCroix.I was eager to meet with her to see what she would say about the second node changing the way it did.But I did not expect what she was about to tell me.Our appointment was at 9:45 ,we got in there and Dr LaCroix and I talked about the node and I went on to tell her how much we love and appreciate her and all shes done for Hayden.Hayden is totally comfortable with Dr Lacroix and is always more then willing to let her give her a check up.
Dr Abrams wasn't in that day so I met with his PE.Hayden was not fond of seeing a "new" doctor and cried a bit when she came in to look at her. We talked a bit and she explained to me that once again,Dr Abrams was a little worried about another nerve being right around that area.This nerve would affect the movement of her left arm.In this case she would have a hard time lifting her arm.She said that theres also the possibility of the nerve being stretched during surgery but that would only be temporary weakness in her left arm.We then met with the nurse who schedules surgery and she said they set up surgery for the next morning at 9:15.Again I was shocked,i was expecting another week.We left for home after that.On the way home I called my mom and told her when surgery was going to be.She said that her and dad were going to start driving that evening and come down,they were planning to go to Indiana for the weekend and decided to change there plans and come down here to be with us and help us with the kids after surgery.I know any women who has a good relationship with there mom knows that theres no one like your mom to help you.Matt claims that anytime something has gone on with Hayden ,the minute I know my mom is coming,i calm right down.:)I asked him if that's a good thing he said "I guess,cause you calm down".Silly boy:).
At some point after I left the surgeons office I started praying.Crying out to God on behalf of my baby and I heard his still small voice say "im already there,in that operating room tomorrow."This brought me so much comfort.And peace.Such peace
We got home that afternoon and I started packing my bags and Dr Lacroix and Dr Abrams were unsure of wether this would be outpatient or inpatient,although they were hopeing for outpatient.
Meanwhile ,somewhere between the first surgery and this point,Matt hurt his arm.Hes had problems with his shoulder popping in and out for as long as weve been together but something in the past month was giving him allot of pain and he had been unable to do allot of things he normally could with that arm.He went to the chiropractor twice in one week and after the second time the chiropractor said he thinks its his rotater cuff and he wanted him to get a mri done.I had scheduled his MRI for Friday(the day after surgery,but I scheduled this before we knew about surgery of course)
Wednesday night we had a cookout with Matts family.I am a people person,the best thing for me to do in the midst of something like this is to be with people I love, and I love my husbands family like my own.So that night was so good for me.Asher went home with Matts sister and spent the night with them.Thursday morning we got up at 6.As I was getting ready that morning I got this picture...Jesus ,in a white robe,walking around the operating room,picking up eery tool,checking it and then putting it back down...as though he was the one about to do the surgery.Again...such peace.
We headed down to GMH around 645.They put us in our room and soon after we got in Pat Overholt came in and hung out with us(the same Pat that was in with us for the first service.We really have the best friends.)We prayed together and then tried to keep Hayden from thinking about food or drinks:) A few doctors came in but not nearly as many as the first time an not nearly as many were checking the node.Finally the time came for her to go back.I held her as we walked back and when we got outside the operating room Matt asked to hold her,but Hayden wouldn't let him.I was so shocked by this.But as I was talking to Hayden and explaining to her that she was going to go in to see Dr Abrams she piped up and said "No .Stay Mommy" I remembered,a month ago we were here,and Matt held her,and Matt handed Hayden to the nurse ,And Hayden screamed.She remembered.Tears filled my eyes and I asked Matt "You held her last time didn't you?" he replied "oh,yea.She remembers doesn't she." There was nothing I could say to my little girl to make things better,nothing I could say to calm her.Cause fact of the matter was,in a few minutes ,once again,a stranger would take her into a room,lay her on a table and give her the anesthesia.I know that's a short time that all that happens,but im sure to her,it had to be the scariest thing ever.I hate to think about that.It breaks my heart.But everything about this has broken my heart.No parent wants to see there kids hurt,in any way,any form.We hurt when they hurt.....He hurts when we hurt.
The same things happened with this surgery as the first one,we stood outside the operating room with Hayden,nurses came and talked to us,had us sign some papers and eventually asked to take Hayden in.She clung to me for dear life and we had to pry her off of me to give her to the nurse.She took her in ,the doors closed, and again we were escorted out,all the while I heard my baby screaming.This walk was longer then the first one and it wasn't long before I covered my mouth and tears started rolling down my cheeks.I saw the door and wanted to run so I didn't have to hear her scream anymore.We got out to the waiting room and were soon joined by Pat and Matts sister Val who had a starbucks for me.We sat there and talked.This time it seemed to take allot longer then the first time before they called. My mind wanted to wonder so badly thinking "maybe that means something bad happened "but I kept reminding myself of the verse "taking every though captive" .I received so many texts that morning of people praying.And my facebook page kept notifying me of more people who were praying.I cant tell any of ya'll how much that meant to me and what it did for me that morning.They finally called saying surgery started and that she was doing great.We sat there a little over an hour before they called us into the conference room.Dr Abrams walked in soon and said everything went perfect.The nerve was spared again but there was some stretching so she would have temporary weakness in her left arm.They got out a bun ch of little nodes this time and some more puss. He said again they had put a drain in and would take it out Tuesday when we meet him.I was feeling excited.Finally a light at the end of the tunnel.This was it right? But then he said something that took me a little off guard."I could see that theres moer infection growing where the first surgery was.Theres a muscle there and behind the muscle I could see more growing.So we will probably have to do one more surgery to get that our since antibiotics are not helping."Ugh.I didn't even want to think about what he just said I just wanted to get to Hayden.He said she was waking up as he was walking out to meet us and that we could go to her right after we were done talking.As soon as he walked outwe quickly got our stuff and started walking to the recovery room where she was.When we got to her a nurse was holding her and she was doing that breathing thing that kids do when they've been crying really hard.Apparently she had been awake a little while and they weren't able to calm her.Oh my heart...I wrapped her in my arms and she cried a little more. We sat there for a while and were told we could go home in the next half hour or so.I was so surprised by that,Hayden still wasn't "with it" yet we were allowed to take her home.
(she got whatever she wanted)
(Night after surgery,she slept in our room over the weekend and I loved watching her sleep.so peaceful.so close to me.)
(The drain that's in her inscision now)
(Mom changing the dressing,something we have to do 2-3 times a day)
Friday Matt had his MRI and we are waiting for the results.Hopeing we get them tomorrow(Monday)and praying they will be good results!!
Mom and dad left this morning.We weren't planning on going to church as Hayden had a busy day yesterday since we went out for a while.But as mom and dad were getting ready to leave I looked at Matt and said "I think I want to go to church,all of us" so we quickly got ready and to my surprise,werent even late! When mom and dad were leaving though,Asher and Hayden both cried,allot.It was probably the worst goodbye my kids have had.Hayden tried crawling out of my arms to get to mom and cried "mimi mimi" the whole time while Asher just sobbed and said "don't go mimi don't go!" .Like I said,my kids love there grandparents.And its no wonder the way mom and dad(mine and matts) interact with them! Even after mom and dad left,Asher stood in the living room with Matts arms around him,and just cried.
Ive been wanting to get my hair done for the past 2 months.I even at one point had the text wrote out to a girl in my church who does hair,but then I got a call about another dr appointment and told myself ,I just cant right now.All you women who get your hair done know how agrivating it is when you see your highlights growing out:)I just told Matt yesterday that I really just want to get my hair done,not think about it and just get it done...but I cant not think about it. Ill think about it ,then I wont do it.Today in church,that same girl who does hair came up to me and hugged me saying shes praying for me and just wanted to bless me.She told me to come into the studio this next week and get my hair done.To have a relaxing time and enjoy getting pampered. I literally started sobbing. As she walked away I just stood the crying and smiling.God cares.It sounds silly,but he knew what I wanted and he made it happen.
That leads us to right now,11:15 on a sunday night.Way past my bedtime I might add,but once I start typing I cant stop,obviously by the length of this post.BTW ,if your still reading,thanks for sticking with me.Also please excuse all the miss spellings and half spellings:) I hate to re-read.Hopefully you can make sence out of this all:)
Tomorow we will hopefully get Matts results back and Tuesday I meet with the surgeon to discuss whats next,i guess. Thank you for the continual prayers.Honestly there are so many times I feel so undeserving as I know there are so many kids with worse diseases, life threatening diseases, yet still this is our journey, what God has us walking through and your prayers are so much appreciated.
Music is a passion of mine, even as I have written this,ive had my earphones in and am listening to praise and worship music.It soothes me, It moves me, Its how I worship.. tonight I seen this on a friends page and decided this is my song for the next week. Whatever it brings...
You stay the same through the ages
Your love never changes
There may be pain in the night
But Joy comes in the morning
And when the oceans rage
I don't have to be afraid
Because I know that you love me and your love never fails........Thank you Jesus!!!!
Hi, My name is Wendi Owens. I was Sophia and Lexi's teacher this year. Your faith is inspiring. You have a beautiful family. I know that HE has big plans for you and your family!
ReplyDeleteThank you Wendi!
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