Friday May 8th
Tessa's dress fitting is at 10am, then ears to be pierced and off to take Emma to the eye specialist at 1 pm and Tressa to the ear specialist at 2:30. The dress is BEAUTIFUL! Her ear piercing went well and she chose a ring to wear for the wedding as well. I could not be in two places at once so Mandie is taking Tressa and I am taking Emma to her Doctor's. Emma's appointment at 1pm lasted till 4 pm as he is having some issues on her eyes he said she is far sided which is unusual for kids with Down syndrome although he sees all god...BUT he wants to see her i four to six weeks..tells me to fit it around her heart surgery if needed. OK, I am not stupid....NORMAL eyes do not need seen in four to six weeks... but he said it is just his need to watch her.... SO I scheduled for the week the kids are in camp June 17th.
Thursday May 7th Emma is feeding well, I want to go home.. She has eaten like they said if she did you go home.. She has been hooked to machines she wants to me loved on free of all the cords and needles..alarms going off etc. Both doctors come at the same time and release paperwork starts.. I inform home we are coming. It took a few hours as I packed the room had everything in the van except Emma...I want to go home!
Wednesday May 6th We would be going home today but because I requested the additional test we are instead heading to Pre Op. I am scared. I have cried all night, I just want to hold her for the hour I have until surgery...BUT OMG.... they are here...I ask what are you doing... 8 am.. Surgery is 10:45am. They look at me in shock. Ma'am you do not know your daughter is going for surgery???? I said yes, but it is at 10:45 and I have family and friends coming to be with me..Well they have an opening in their schedule, she is going now... I had just gotten Emma on me to cuddle and talk .. I am numb. Tears just flow as I keep silent. I did not want any more uproar over my asking questions..the decision was made to stay and I need to be brave. Entering Pre op the nurse shares she is aware of my concerns and all that happened last night by my asking questions and demanding answers to make me feel I am doing the right thing by staying local. She assures me EVERYONE is aware. I get to hold Emma and I am holding with all my love...Connie walks around the corner and said se woke up feeling I needed her and she came.. I felt so good that she was there. It all happens so fast and she is wheeled away... I have one hour which seemed like a half a day or more before the surgeon came out to say it all went very well. Nothing unexpected. I felt relief and wanted to hold her...in a half hour thy came for me to say she is back up in her room... Connie and I ran to the room to be by her side. We spent the day holding her as she could not eat until 6 pm and she sure was hungry. At her 6 pm feeding she ate it in seconds.. kept it all down and we cuddled till 9pm...The 9 pm feeding went equally as well so we cuddled till midnight.. She ate and we bedded down for sleep. Yes she was laying on my chest. I feel soundly to sleep and knew I needed to get her in her bed so I did not drop her.. The nurse fed her at 3 am and woke me at 6. All is going well..
Tuesday May 5th, The doctor said that he wants one more day of antibiotics because of her conditions she needs the extra because hey did not get any conclusive answers to the cause of the fever..so to be cautious we will stay over to tomorrow and then go home. Because I believe we got the virus by sitting in waiting rooms I request that we go ahead with the Gird/reflux test since we are staying any way. He agrees and orders us for upper GI at 1 pm. When we go for the test I can tell as the test concludes something is not Right..we go straight to a sonogram of her tummy immediately. That person isn't talking, just said they will discuss everything when I get back to the room... then I am pushed to the hallway to wait fora transport person...I so wanted to go by myself to the room and cry..I just know something is wrong. When we get to the room the doctor who has already completed his rounds is back and informs me she need emergency surgery for a Pyloric stunosis..I am told the surgeon is on his way to explain. I called Michelle to get to the hospital NOW!!! I call the school to cancel my IEP for morning and let my family know we have this new turn of events. When the surgeon explains everything and leaves I am concerned with her having surgery locally. I call our Pediatrician he explains he would want this one doctor for her Anesthesiologist, and that person is not available so I am having high anxiety. I express my concerns an desire to schedule when the one Doctor is available and am told it won't work and i can transfer to Miami or St Pete right now but this will prolong surgery and she can not eat until surgery is preformed. I am a mess. The head nurse is outraged at my expressing a certain Anesthesiologist. Said I have to take who ever is on for that time in the hospital. My concern is that fr most surgeries we are sent to St Pate or Miami for our kids and now they say she is fine here... Yes this surgery is routine, they do one a week BUT SHE HAS THREE HOLES IN HER HEART! I am so scared. I have no idea what the answer is. The head doctor for the department of Anesthesiologist came t my room to discuss my concerns. When he got to my room I realize he is the son of a women I worked with for years at Children and Families. He understood my concerns and assured me he is assigning a skilled, experienced Doctor who Emma will be in quality care for surgery in the morning. He stated that if Emma's heart failed in Miami or St Pete the would not have a heart surgeon right there that they too would stabilize her and call a heart specialist... same as in Ft Myers.. He said she would go life flight if needed to a higher skilled facility is anything went wrong but he said he has consulted with her heart doctor locally, her pediatrician and all those who are involved now nd he is confident we have the team locally to do this surgery ad if he has the slightest concern he would be sending us to a higher skilled facility as the same said by the surgeon doing the operation. I then talk to the surgeon who now says he does not feel comfortable doing her surgery since I have lost trust in him...I am a real mess at this point and try to explain why I need all my questions answered to feel comfort in putting my little girl on the table.. I just did not want to loose her and no words from anyone could help me. Call me selfish, I want her in my arms tomorrow....alive and well.
Monday May 4th
Emma is not shaking the fever, she is on IV, Tylenol and two types of antibiotics. She is looking weak and not my perky Emma who smiles when happy. I alert home that we are staying more days until they can get her fever under control. Michelle has come out to the hospital. We are showing the nurses how her bottom puckers when she has a BM and they seem concerned as well...then they see her vomit after feeding then the curdled formula after three hours of feeding....they cal one time it thrush...I do not believe it to be thrush because it wipes right off. I discuss things with the on call
Sunday May 3rd,
Emma did not wake up all night...When I rolled over to see the alarm clock showing 6 am and I had not fed her I ran to the front room to check another clock for accurate time. It also shows 6 am..I go back to pick up Emma and she does not wake easy. With touch she seemed very hot, fever 103.6 under her arm, I called her Pediatricians after hours number, they took the information and sent me to ER. In ER it was apparent no one knew what was causing the fever. They did all the tests to find what was causing the fever. Everything is coming back negative so they declare it a "virus" and tell me she is staying for 48 hours until all tests come back. Erin is holding down things at home, Mandie and Michelle are on stand by if she needs any help. Mandie picks up Jordan so the morning goes easier for Erin getting all the kids on the buses alone. Er took until 4 pm to get us up into a room...6 am to 4 pm in Er was INTERESTING....
Jordan turns 9 years old....
Saturday May 2nd --- We celebrated Jordan's ninth birthday in a Pirate theme. He was thrilled and all party goers had a great time. We played in the pool, had a treasure hunt, many out door activities with the pool the focus for the afternoon.
