9.18.17 Cecostomy 3
In the PACU with Aimee working to get off of Bipap so that we can transfer to the floor. Surgery went well and was done laproscopically. :)
9.18.17 Cecostomy 2
Aimee is back in surgery. We are praying that the surgeon is able to perform this procedure laparoscopically, as this will mean much smaller incisions and much less pain. If they do have to open her up, she will need an epidural. We plan to be staying with Aimee on the floor following the procedure, but they have decided to reserve an ICU room just in case. It is much more likely that she would need to go to the ICU after this if she has to be opened up and have an epidural.
In good news, the IV placement was done by ultrasound this time before she was put under amd went really well on the first try!!
In good news, the IV placement was done by ultrasound this time before she was put under amd went really well on the first try!!
9.18.17 Cecostomy Surgery Day 1
Surgery 1 day is here. Aimee did have difficulty with the antibiotics yesterday, which made her nauseous, but she made it through sufficiently. We donned our "love" shirts this morning and kissed our boys goodbye. 
Aimee was nervous and agitated when we gave her Tilly bear and pushed her into the hospital. I think she knows that he only comes along for procedures.
Once we got her in the warmer, she got kind of excited about the adventure. She likes the warm air blowing on her and the silly sounding gown.
The warm air is putting her to sleep before she even gets anesthesia, on which we are currently waiting. She should be heading back to the operating room soon.
Once we got her in the warmer, she got kind of excited about the adventure. She likes the warm air blowing on her and the silly sounding gown.
The warm air is putting her to sleep before she even gets anesthesia, on which we are currently waiting. She should be heading back to the operating room soon.
9.14.17 Surgery 1
Monday is Aimee's GI surgery to place a cecostomy tube. The start time is scheduled for 11am and it should be completed within 3 hours. We plan to bring her home after a 3 night stay and may be able to actually use the new port by the following week. The prep at home is definitely the most intense we have yet done for any surgeries. As they will be creating an opening to her colon, they have her taking multiple antibiotics ahead of time and on clear liquids only for 24 hours ahead. We will also do a significant number of respiratory treatments ahead to have her in the strongest position ahead of surgery.
In other news, Aimee has been very emotional this past few weeks. We have multiple full days of tears with some panic episodes. Last week when I took her in for a wheelchair adjustment pre-spine-surgery, the PT evaluating her expressed significant concern about Aimee's right hip. She did have both hips restructured 21 months ago, so it "shouldn't" be out of joint. However, between the possible pain episodes of crying and the PT showing me some physical cues, we are going to look closer. When we go in 2 weeks for pre-op x-rays and appts with the spine surgeon, we will add a hip image on as well. Praying that it is actually her scoliosis pushing her pelvis that is causing those cues.
The boys picked up a cold bug a couple of weeks ago. We did our best to keep them seperate from Aimee and miraculously, she did not get sick! They were pretty excited to be able to play with her again the next week. 😁 Unfortunately, with school starting and sicknesses beginning, we are now homebodies. No school for Aimee until at least Thanksgiving and no church until Spring. 😢
We have been enjoying the last days of summer, aside from the big tears. Aimee especially loves being near Daddy's projects, preferably ones that include saws, but a lawmmower will do in a pinch. 
I will update as we have news throughout Aimee's surgery and hospital stay.
8.23.17 Support
Thank you to everyone for all of your support as we head towards these big life events. We have received encouragement, prayers, and funds. We have felt peace going forward knowing that we have this support backing us. We are so grateful to have you on this journey along with us. Thank you!
There are two opportunities to participate with us beyond sending us your messages and prayers. A gofundme page has been set up here https://www.gofundme.com/loving-aimee to help cover expenses during hospital stays and time off of work. Also, we have launched a new t-shirt design here https://www.bonfire.com/team-aimee-love/. We will only have this new shirt available for a very short time so that orders will be received by the time of Aimee's first surgery. To allow as many people as possible to purchase shirts that may not have been able to afford to buy one in the past, we kept the cost of the standard t-shirt ($15) and kid t-shirt ($12) as low as possible. If you already have a Team Aimee Love shirt, please consider pulling it out. We hope you will all be able to join us in wearing one of the Team Aimee shirts during her surgery and recovery times. Here are a few of the style and color options that are available with this new design.
Again, we are so grateful for each donation, each show of emotional support, each prayer. Thank you for being on Aimee's team. <3 div="" nbsp="">
8.12.17 Schedule
We have a date!
(Caleb brought a chick to Aimee last night. She worked impressively hard to find it with her hand.)
I was finally able to connect with a scheduler and was able to set a date just in the timeframe for which we were praying. When the scheduler put me on hold for a few minutes, I prayed that everything would fall into the right timing, even if that wasn't the timing that I thought was best. The scheduler returned to the line and asked me if there was a time I was hoping to schedule!! That has literally never happened with any scheduler ever for anything at the hospital. Thank you Jesus. Though we are nervous to go ahead with surgeries, I am finally able to plan for the coming 3 months!
Over this next month we will have a few more preparation appts. In particular, we will meet with the equipment PT and wheelchair vendor to discuss what changes are needed for Aimee's chair for post-op. I am so grateful to be having this thought through appropriately ahead of time, as equipment was a huge problem after the hip surgery. Ed and I had to basically find a way to majorly modify her wheelchair on our own in order to get her home. The surgery team had thought ahead and ordered her a regular wide wheelchair, but it did not recline and had no supports... it is almost comical to remember. Not repeating that scenario.
Here are the big highlights coming up:
- September 18th GI surgery to place C-tube
- October 17th Ortho surgery to place spinal magnetic growth rods
- November 3rd baby boy is due
There are going to be a lot of prayer requests for each of these events individually, but, at the moment, there are a few keys.
- Health for our family so that Aimee heads into both surgeries fully well.
- Peace about finances. We have attempted to save sick and vacation time for these 3 events. We are hopeful that Ed will have enough to cover the days we need to have him not work, but we can't know ahead exactly how that will work. Beyond being Aimee's dad, Ed is the best right hand helper that could ever be. We work well as a team together to face and decipher all types of obstacles. I am praying to have him with us during every challenging moment.
- Proper, on-time delivery of baby boy. All 3 babies that I have carried so far have come within a few days of their due date. I do not anticipate this time being any different, but am praying that the stress does not cause any early changes.
- Much peace over our home and each family member as we start to prepare for this marathon. Praying we can rest and enjoy time together before we face the hurdles.
8.4.17 The Sad and The Beautiful
To get the sad news out of the way first, I am going to give it straight away. We had to return Aimee's service dog, Yoda, last week. We were finally able to get the results of her allergy test the week before and found that she was allergic to dogs among other things. It really had not occurred to me before that she might be, though her symptoms had become much more extreme this past year. We made the sad concession that his benefit did not outweigh the challenge and took him back. Still working on cleaning out Aimee's space and removing the dog presence from her room, but I feel that she has been improved this past week.
Before I give you the beautiful, you must endure the mundane. Tuesday, Alyssa and I took Aimee in for her contrast x-ray procedure. Knowing that I could not stay in the room with her due to baby, it was a huge blessing to have Alyssa with us. It was not a comfortable process and the hospital provided a child life specialist to help ease/distract Aimee as well. I was so grateful that Alyssa was in there too though for Aimee's sake, since she could provide feedback on Aimee's distress level and her presence could comfort Aimee. I think the procedure was also easier for Aimee to endure since she is very used to having a variety of enima type processes done daily. All the anatomy looked as it should through her colon according to the technician. We are now ready to have the GI surgery done whenever they have a cancellation or September 18th, whichever comes first.
Sidenote: Still no contact from the spine surgery scheduler, though it has been over 2 weeks since we were cleared by Anesthesia. I left a message earlier this week, but am feeling uncomfortably aware that our timeframe is getting smaller. It seems unlikely that this will work out as we had hoped with 13 weeks left until the arrival of baby boy.
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