6.16.21 ICU Update 2

Aimee has had a rough night. It has been a struggle to find a balance with different meds that keep her pain down without side effects. We are limited to IV meds currently. If we don’t manage it well, she is breath holding, causing sats as low as 7 (!). I think it hurts to breath deeply and this is her neurological response. Yes, she is on her bipap with oxygen all the time, but she can still hold her breath. Her heart rate and blood pressure go up with pain. She is moaning and restless. Yet, if we give her bigger pain meds, her blood pressure plummets down and they have to give her a bunch of fluids. So, here we are with a puffy girl who is fitfully sleeping with on and off breath holding spells. It is a helpless feeling when she is in such pain. 

Thankfully we are in the best spot right now. The ICU nurses have been amazing. They are better equipped to help her and their constant monitoring is a relief. When we move to the floor, we are the first line of defense and have to respond to Aimee’s needs because it may be several minutes until a nurse can come. And they are coming because we call for them. Here is it seconds until someone is in the room without us even getting up.

Aimee is being cared for by the PICU team primarily, but also by Ortho. We expect to have rounds with both teams at some point this morning. 

Here are a few more photos of playing a fun dice game together around the family table at home. Aimee has her own button controlled dice roller so that she can be a part of the activity. 

6.15.21 ICU Update 1

We are with Aimee in the ICU! She is doing well. She was extubated to bipap with oxygen. She has had 1 unit of blood at this point. She has a couple of drain lines, arterial line, a few IVs, ect, but she is so far  fairly comfortable with a cocktail of IV pain meds. Her oxygen is good overall, her blood pressure is decent, coloring is good. She is really doing stellar so far. 

We haven’t seen her back yet, but hope to be able to see it tonight with the nursing change. Overall what we have noticed is a definite shape change in her side back. She does have some skin tearing on her face, which is sad. 

The plan for tonight is managing pain/muscle spasms (both of which have already begun 😢), monitoring blood loss, the output from catheter, and labs. We hope to start pedialyte in the morning and possibly try to sit her up tomorrow. Maybe. If papa bear says okay. 

6.15.21 Surgery Day OR Update 3

We just spoke with the surgeon. Aimee is finishing up in the OR and will be transferred to the ICU soon. The surgeon said that things could not have gone better. The existing hardware at the pelvis and neck were solid. None of them had to be replaced. He cut out all of her previous scar tissue, which will hopefully allow for better healing. 

He was able to straighten her spine further, which is something we had not at all expected. For recovery this means more pain and muscle spasms, but for the long run, this is such good news for her lungs. 

Now we wait for her to be transferred to ICU and them to get her stabilized. They are hoping to extubate her to bipap. 

6.15.21 Surgery Day OR Update 2

Another update from the OR nurse. They are finishing the fusion and moving onto closure. We are hoping to meet with the surgeon in about an hour. 

A glimpse of a few of the family photos we had done in May by Photography1955. 

6.15.21 Surgery Day OR Update

We just received an update from the OR. The hardware is out and they are beginning the fusion. Aimee is stable. We should have another update in a couple of hours. 

For now, I am distracting myself by going through family photos. We were able to take the kids away for a couple nights last weekend to spend family time together. Here are a few photos of the fun: 

6.15.21 Full Spinal Fusion Surgery Day

Aimee went back into the OR at 7:30 this morning. We have been full of emotion. Pretty scary day. The anesthesiologist really cautioned us about how serious this is and how sick she will be. He said that due to the work around her spinal column they cannot do any nerve blocking and they have to use a more intensive version of anesthetic that does not affect her nerve communication so that they can monitor it. She will take longer to wake up, which means more difficulty respiratory wise. There will be significant blood loss and we expect a transfusion to be necessary. The surgeon tried to reassure us with his bravado and confidence. We do believe that this is right and good for Aimee’s health, but oh man, if we could just shield her from this experience. 

She was given some midazolam before going back, so she was very calm and sleepy as we said our tearful goodbyes

6.11.21 Family Time

I have some great news to share with you. We had new hematology bloodwork done this week and Aimee’s blood counts are incredibly improved. The new absolute neutrophil count number is 1200, which is approaching normal (1500-7200)!! What a wonderful feeling as we come closer to next week’s big procedure. 

Speaking of next week, Aimee’s full spinal fusion surgery is on Tuesday. We will check in at 6am for a 7:30am start time. It is scheduled to be 8 hours long... oof. She will head straight to the ICU once the procedure is done and when she is settled we will be able to join her there. I will update here throughout for all of you who are praying and loving Aimee from afar. 

Aimee is doing really really well following the ostomy placement a few weeks ago. She is much more comfortable and sleeping better than she has in years! I had no idea that it would improve her sleep and that much of her discomfort throughout the night was due to cramping. I wish we had done it years ago. The ileostomy was definitely the right choice for her and we are so grateful to have it done before the spine surgery. 

We were able to have family photos done by a sweet, talented friend before Aimee’s May procedure. I don’t have more to share yet, but she did send us this one dear photo of Aimee and Louisa. 

We are savoring as much family time right now as we can. It is unbelievable that we have to leave our home and young kids again in just a few days. For now, we focus on time together, relationship memories, games, books, and snuggles.