Thank you all for your patience in my lack of updates lately. Because of Hurricane Matthew hitting the east coast, I have been working storm duty for Dominion Power and haven't been home with my family since Saturday. I got home yesterday evening in just enough time to run Madelynne to Piano practice, hug my babies and begin to TRY to pack for our 8 day trip. Exhausted is an understatement.. and not at all the state of mind I need to be in before our tour of Cincinnati and major surgery. So if you have extra room in your prayers, please, keep us in your thoughts.. we are running on fumes right now.
The plan is to hit the road by 6pm this evening. Our first appointment is tomorrow at 8am, so that will give us 14 hours from the time we leave Richmond to the time we need to arrive for our appointment. Given it's a 10 hour drive, we only have 4 hours, max, to sleep. We're not sure where we will stop for the night.. it'll depend on how the girls are doing and how tired we're feeling as to when we'll pull off and sleep for a few hours before hitting the road again.
HERE'S THE ITINERARY
Friday, October 14th
8am - Sleep Study Follow-Up. This appointment is not at the main hospital campus, it's approximately 20min from the main hospital. We will review the results of the Sleep Study that we did in the spring. I hate that it's been this long to followup from this test, but it is what it is. Hopefully we get some help and guidance on what it will take for Belle to finally sleep thru the night for the first time in her life.
12pm - Motility Clinic Visit at the Main Hospital. We will meet, Dr. Kaul who will be performing the majority of our procedures that day and during surgery. He's the Director of the Neurogastroenterology and Motility Disorders Clinic for the hospital. We are thrilled to have him part of our team and find so much comfort that he's the best in GI Motility (Annabelle's #1 cause of pain).
1pm - Anorectal Manometry - We will be admitted for this procedure. It should take approximately two hours to perform and is hands down going to be one of the most painful procedures Annabelle has had to endure. I have not told her what is going to happen and I feel terribly guilty for keeping it from her (because that isn't how we navigate this journey with our daughter), but I just can't find the words to explain to a panicked 5 year old that it's going to be hell and allow her to spend days, hours and miles down the road filling herself with anxiety from it. I've asked that Child Life be involved in the procedure and are there to explain to Annabelle what will be happening.. they always have the best way of explaining to children on a level they'll understand. Belle will be conscious and awake for the procedure, likely strapped down.. so please, please pray that she recovers well (psychologically and physically) and everything can be performed as quickly and efficiently as possible so we can leave.
The results of this test will give our doctors all the information they'll need for when we perform surgery on Monday. We will determine how much of her lower GI is not salvageable and what we will remove and also which places in her lower GI are salvageable but to which extremes we need to treat them and pray we can save it.
After she is discharged from the hospital Friday evening, we will find a hotel somewhere between Cincinnati and Mason Ohio to stay for the night. Friday evening fully depends on how Annabelle is recovering and how she's feeling. Our goal is to find a super cheap hotel, preferably close to Mason, Ohio so we don't have to travel far on Saturday.
Saturday and Sunday
Great Wolf Lodge! We decided to bite the bullet and take the girls to Great Wolf Lodge for the weekend. We are hoping it will give Annabelle and opportunity to forget what happened on Friday and distract her from the upcoming surgery on Monday.. she will be with her sissy and the two of them can play and have a great time together making plenty memories to relive during the stressful week ahead.
Monday, October 17th
8am - Genetic Consult - This is one of the appointments AK and I have been anxiously awaiting and subconsciously fearing. We will be consulted on what information the genetic testing may reveal and will make decisions on just how much information about our baby girl we are going to want to hear. I look forward to this consult on behalf of the quantity of information we will receive, but I am scared to death what these answers and tests may reveal. A lot of these decisions have to be made before the surgery that day because that could determine just how much and what method of DNA extraction they'll perform.
9:45am - Admission - Shortly after the genetic consult, we will head towards admissions and begin the day. They will admit her to the hospital and prep her for surgery where we will begin to meet with everyone on the team, all the surgeons, anesthesia etc
11:17am - Surgery - At this point, we have absolutely no idea how long surgery will last or what will happen after surgery is over. We don't know the recovery period or whether or not Annabelle will be admitted afterwards. Everything is truly based on how extensive of work we need to perform while she's in the OR and how well Annabelle is managing pain afterwards. Our prayers are that we can take her back to our hotel that night.. but only as long as we can manage her pain on our own.
Tuesday and Wednesday
Recovery and taking it easy. If Annabelle is up to it, we plan to go to the Ark Encounter and Creation Museum. She won't be able to walk for quite some time after the surgery so this will be an easy stroll where she can stay in her wheelchair or stroller while we explore some fun things. If she can't get around much or isn't up for it, we will spend our time watching every movie, playing every game and painting all our fingers and toes in the hotel or hospital for days :)
Thursday, October 20th
11:15am - GI follow-up - Biospy results day. Pathology will have the results of the biopsies taken during surgery so we'll meet with Dr. Putnam to follow-up from surgery and review those. Annabelle relapsed pretty hard in the spring with no plausible explanation. We have been very diligent in making sure her foods and exposure are controlled so our prayers are that her Eosinophil count has dropped since the spring. If it's remained high and the disease is still present and active, than we will have to determine our next plan.... and that likely will mean Annabelle will loose all her food again. I don't even want to think about this option, so fingers crossed for zero Eosinophils.
Thursday afternoon / Friday morning we will begin our drive back to Richmond.
Our hearts are heavy as we begin this trip. Madelynne has secretly been asking her Sunday School teacher at Church if there's any way Annabelle can have extra prayers because she is very scared for her sissy. She asks often if her sister is going to die, she asks if she will be in pain during or after the surgery. Annabelle's depression is becoming more and more sneaky as she gets older. I can tell school and activities have been an excellent distraction, but when the house is silent and she's alone, little tears fall and her face becomes pale at her reality. Annabelle's questions are so heavy lately, she wants to know if her pain will ever go away, she wants to know when she can have a real cake or be able to ride a bus with her friends and not be in a wheelchair...... she wants to know, "Why won't God listen to my prayers and make me better.. God doesn't love me like he loves other kids.. he won't make me better and I ask him every single day"
This trip has the potential to be life altering for our family. We are so very strong together, but the weight of the unknown is heavy.. life in a hotel and hospital is physically and emotionally exhausting and our faith is a constant battle when you're raising little girls to trust God with all your heart.... and then life lands you in places like ours.
Our prayers for the next 8 days are for safe travels, knowledgeable doctors and skill in their hands as they operate on our daughter for the 27th time in her life. We pray for the expertise of the anesthesia team and miracle over her GI system that the disease has not spread. Healing for Annabelle's body as she recovers from a major surgery. Patience, skill and love as we control our daughters pain. We pray for understanding, love and comfort for both our girls as they witness and are part of a big week in our family. Love, ease of anxiety and understanding for all of us as we support, embrace and lean on one another 550 miles away from home.
No comments:
Post a Comment