DeVoe Family

9.19.17 Cecostomy 5

Aimee had a pretty great night. A little low on oxygen compared to her normal and really low bloodpressures, which caused some stirring in the middle of the night with a risk assessment team. This is a tiny higher this morning. She also has not yet urinated on her own and when I have cathed her, there has not been much urine at all. They have added a larger dose of IV fluids and she has really perked up this morning. Amazing what hydration can do. We are hoping that at some point today we will be able to start her on slow doses of fluids through her g-tube. She does not seem to be having any pain, so once we learn about the care of the c-tube, maintain a good blood pressure, finish antibiotics, and get her tolerating normal feedings, we can take her home.

9.18.17 Cecostomy 4

We're keeping track of that anesthesiologist's name, because that was the beat experience Aimee has ever had with anesthesia. He did research ahead of time and talked with a brain disorders specialist. Basically they feel that Aimee may be more resistant to anesthetic, so they put a monitor on her head during the procedure to ensure that she was getting enough. How brilliant (and a bit terrifying to think that this was not done in the past...).

Aimee is now settled in her room. She has had no pain medication and she is calmly alert. Really incredible. The incision spots look great. The surgeon had a bit of trouble seeing, but he persisted and did not have to open her up as a consequence. We will let Aimee rest tonight and hopefully her gut will be awake enough to take her medications this evening. Hoping to start feeding her again tomorrow. Her oxygen and breathing are still a bit off, but she is doing so well. What an amazing girl Aimee is!

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!!

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.

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.