Ashley's Story

She will leave fingerprints all over your heart


Small Victories

Late yesterday afternoon Ashley's antibiotics were changed and I believe it was a good thing.  She's had two doses now and I'm beginning to see small victories take place in her condition.  I realize we are a long way from normal or from being well, but to see the smallest of changes in her comfort level and overall condition have been such an encouragement.

Victory 1.  She sat up this morning.

 I can't even describe how HUGE this is for her this week.  Its been 7 days since she was able to sit up for more than a minute or two at a time.  During those minutes she was so miserable and she would do everything possible to lay right back down.  This morning I sat her up on her bed and she stayed there for the full 45 minute infusion of her anti biotic without complaint.  She's worn out from it now, but she was content to sit there while I rubbed her back and braided her hair.

Victory 2.  Her eyes are actually open.

I can see her eyes today.  Its been days and days since I have actually seen her full eyes.  She had massive pockets of fluid in her eyelids that caused them to bulge and swell and she could only open them in the smallest of slits.  She would actually use her fingers to lift them up in order to see.

She is still extremely swollen in her face, lips, and neck, but her eyes are starting to change.  Her body remains heavy and full of excess fluid, but its getting better and a little more comfortable for her.

Victory 3.  She's interested in being awake.

Ashley has had no interest in her surroundings or much of anything for several days.  This morning she is using her Ipad and watching movies in her bedroom.  She still does not want out of her bed, but she's not just lying there moaning like she had been.  She is signing this morning and actually has an opinion about things.  She's choosing her own movies and letting me know what she wants and doesn't want.  I've never been happier to see her so opinionated!

There is going to be a lot of information in this post so if you want to this might be a good stopping point.  I'm including it all for several reasons, but it may not interest many of you.

She has a long way to go, but I'm feeling a little more encouraged this morning.  After a late evening discussion with her doctor we all opted to leave her home another night and see how she looked this morning before admitting her.  He told Dave on the phone last night there was really nothing more we would do for her if she were taken to the hospital.

 At this time her care would be the same there as what we were doing at home except for having her hooked up to the monitors to track heart rate, respirations, oxygen sats, and blood pressure.  I kept track here of her oxygen sats, counted respiration, checked temp and blood pressure all from inside her bedroom.  Although I was a little nervous as the evening got closer I'm really thankful we chose to stay home after seeing her this morning.

Her temperature remains normal.  Her oxygen sats are in the mid 90's which is perfectly acceptable.  Her heart rate is higher than normal, but not extremely high like it had been the first few days of the infection.  Her respirations are still too high and that is my mine concern because we don't want her to get too tired to breathe, but we do have oxygen here if she were to need a little assistance.  She is in no danger of needing to be intubated or anything to that extreme.  Overall her vitals are very stable.

Yesterday afternoons lab work was a mess.  Thats the best description I can give.  Her liver is hurting.  I've only one time ever seen her bilirubin climb to such levels, but the odd thing is that her liver enzymes showed much improvement.  Her kidneys have taken a hit this infection and with each new infection we see more and more damage to them.  Her CBC was much more stable than it has been the last 6 weeks so she won't be requiring a blood transfusion this week unless something drastic changes.  Her platelet count was down to a critical level, but its hard to measure Ash' platelets due to many things.  They always do a manual count of them to determine the most accurate count and yesterday she was only registering a number around 38.  It may or may not be accurate and we will check again tomorrow morning to decide if we will infuse some or not.  She is dry inter vascularly and we are running IV fluids, but we do that for her daily anyway so I'm not expecting a big change there until we can get the infection under control.  When she has a major infection the walls of her vessels become weak and the fluid leaks out of them and into the tissue spaces which causes the extreme swelling of her body.  She receives a liter of half normal saline daily through her CVC when everything is normal.

We are in constant communication with her doctor and his office.  He is monitoring her status through lab values, and speaks to both Dave and I throughout the day.  I could NEVER say enough about how amazing he is with us in our situation with Ashley Kate.  We are so, so, so grateful for his care of Ash.  I know without a doubt that God placed him on call the night she was born knowing we would need him in throughout her life.  That is how involved our God is in her life.  He knew what today would like for her and for us, and He know we would need a physician just like Dr. C.

Ash is grumpy and uncomfortable, but those are actually good signs.  I would prefer that over her being so ill she is distant and uninterested in her surroundings.  Her complaints tell me she wants things to change and she wants to feel better.  All good things in this situation.

Her newest line cultures came back positive sometime during the night.  I don't even remember what time the phone rang to inform us.  We weren't really expecting anything different though.

She has already asked to go for a drive this morning.  We may take her on the lunch hour.  Dave will remain home with her this evening.  I'm planning to travel to Blake's game with a friend.  We are trying to keep things as normal as we possibly can for the older kids.  They are both aware she is very sick and they know she hasn't been this sick in a long time.  I simply don't know how they manage with the weight of the burden they carry on a daily basis.  I know they are concerned because I hear it in the sweetness of their voices as they talk to her each evening.  They love her so, so much!  She has managed some  very weak high fives for Blake the last couple of days, but it has taken every bit of energy she has to respond to his request.  Allie has spent some time cuddling with her in the bed and talking to her while she lays there with her eyes closed.

We still have not seen her smile or heard her laugh for 9 days now.  I will know things are going to be ok, really ok, when those things return to her.  I miss it more than my words could ever describe.


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