Thursday, May 31, 2012

Consider The Bird

There has been a lot of stuff that has happened the past few weeks.  There are good things and I am really trying to focus on them although it is hard.  Carly won the Wildcat Pride All Year award at school.  She also participated in the school talent show with her friend Taylor.  Given her anxiety issues that was nothing short of miraculous.  They did great and when I am home I will have to post the video.  The girls wrote and sang their own song.  They won 2nd place in the people's choice part of the talent show.  I am so proud of all she is doing!  That is the positive- now for the rest.  My surgery went well but was way more painful then I could have expected.  I had thought I would just be up and going in no time but I was so wrong.  I am now 2 weeks out and doing well.  I still have a little pain but it is tolerable.  I do not think all of the added stress is helping me to heal.  I still can't take a bath (don't worry, I do shower) and I still can't lift much.  The not lifting has been hard because of Gabe.  We had to put one of our dogs to sleep last week too.  Just another added bonus to the crapstorm.  He had been rapidly losing weight over a couple of weeks and we took him to the vet and he was in complete kidney failure.  He also had heartworms but they would have been treatable had the kidneys been ok.  We miss him but know he is better off.  Then there is Anna.  God bless her little soul.  Sunday morning she just wasn't being herself and would not eat.  She began to run fever and vomit.  She ran fever all night of 103-104 that would not come down with Tylenol and Motrin.  I fed her Gatorade through a syringe all night just to try to keep her hydrated.  The next morning her fever was pretty much gone but she was still vomiting and refusing to take her meds so I took her to the ER where I work.  They were able to get her meds down her and decided it was just a virus.  She did not vomit at the ER all day but as soon as we got home she started vomiting again.  I was up most of the night with her again- not from vimiting but because she was acting delirious.  I was hoping the worst was over and then she woke up vomiting again.  I decided that this was not a virus and so off we went to see our pediatrician, Dr. Goff.  He was concerned and felt she needed a work up and sent us to the Cook's ER.  We got here and Anna was, surprise, dehydrated.  By the time we arrived it had been over 24 hours since she had urinated.  They started her IV and after 1.5 liters of fluid she finally started urinating.  They then gave her a Gatorade which she drank and did well with.  We finally got out of the ER and to her hospital room that night and she ate a little jello and took her meds and then proceeded to throw all of that up.  After that they said she could not have anything else by mouth except her medicine.  All day yesterday she just got IV fluids and then today she was given a clear liquid diet.  She drank a sip or 2 of juice but refuses to eat anything because she does not want to "puke up."  OK- so none of this sounds too bad, right?  We are on day 5 now with no answers.  I am certain this is gastroparesis (delayed gastric emptying) which we have dealt with in the past.  The cure for her is pretty easy- pyloric balloon dilation done via EGD.  The problem- Anna's regular GI doctor is not on this week and we are having to deal with this Dr who I cannot stand.  She spent all of 20 seconds with us yesterday and decided her big and brilliant plan was to do NOTHING.  She said we need to give Anna gut rest.  Um hello lady, what the hell do you think we have been doing?  She is insisting that this is just a virus that needs to run its course but then in the next breath she talks about gastroparesis brought on by a virus.  She is refusing to do an EGD (scope) until at least tomorrow if even then.  She was the coldest Dr. I have ever met who was completely dismissive of any and everything I had to say.  I talked to the nurse yesterday about my dislike for her and was told that there wasn't really another choice right now.  I grew more and more frustrated.  This morning the nurse practitioner came by and I pretty much had a crying melt down.  I am so tired of them chasing rabbit trails when I know what is wrong and what needs to be done.  They want to wait and see if she throws up today and then do this test and that test and see if she has gastroparesis.  Surprise idiots, we already have established that diagnosis.  This is not a virus.  It may have started that way but it is not that anymore and hasn't been since the first day.  When I said to the Dr that this is exactly how she was before when she had gastroparesis she looked at me and said, "I'll take that into consideration."  I felt like giving her the bird and telling her to take that into consideration.  In the mean time my child is miserable and I am growing more and more frustrated and angry and nothing is being done.  Anna is hydrated but otherwise no different than she was when we started.   The nurses are in agreement with me and are trying to help us today in all ways that they can.  They sent the patient rep into talk to me and I had another melt down.  They are trying to get Anna's regular doctor to swing by and see us today.  I know I am not doing a good job of explaining things on here but there is just too much to tell and the bottom line is that I can't stand doctors who do not listen to a parents.  Then they had the nerve to say to me, "well, we don't want to have to do anything unnecessary to her."  That really pissed me off- as if I do want to do unnecessary things.   I don't want unnecessary things, I just want my kid to get better and sitting here doing nothing is not accomplishing that.  The hospital staff has been great but that Dr. has got to go.  She needs to retire!  Well, I need to get off of here.  Please keep Anna in your prayers and also pray that Dr. Ogunmola will come see us so that we no longer have to deal with Dr. Hunt. 

1 comment:

  1. Precious family. I am sending you a hug. I love you all so much. June