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. 

5.29.21 Home

Elliot and Louisa picked me this bouquet of buttercups yesterday. Being home, spending time in the fresh air and sunshine, sleeping in a bed, playing with our kids,  so much to appreciate. Particularly knowing that we are only home for a couple of weeks, it is easy to feel all of the blessings of home. 









Aimee was so pleased to be in her own bed the first night home. Her brothers were snuggled at the foot of the bed while Ed gave Aimee her evening meds and I read a book aloud. 

Today she has been exhausted. Her oxygen is low and her ostomy output is really thin. Hard not to start reading into the numbers. I think she is just recovering.  Ed and I have been nauseously exhausted and we didn’t have surgery, so I imagine she is not at her best yet either. 

We will be changing out her ostomy bag on our own for the first time tonight. :) Hoping we remember all the steps and don’t make a giant mess of it. 

5.27.21 Ileostomy Day 7

We’re waiting for discharge paperwork! Taking Aimee home this afternoon. So grateful. So exhausted. Can’t wait to love on all the DeVoe kids under one roof. 

5.26.21 Ileostomy Day 6

Lots of great news and progress. One scary event. 

Aimee is off of IV fluids and as of 5 minutes ago is up to her goal feeds. This is about 20 mls/hour less than she was receiving before at home, but it may be all she needs to stay hydrated now.

She is nearly off of pain meds, though complaining this morning, so we will do just a dose of tylenol. 

2 days ago the surgeon said that once we got to goal feeds, she wanted 24 hours to see ostomy output to determine if more fluids were needed. I am really hopeful that she might let us just track this at home and release us today. Hoping to find out soon! 

We did have one really scary event yesterday. Lately when we take Aimee off of bipap she doesn’t start breathing on her own very easily. Her lips turn blue and we have to use her cough assist to force air into her lungs. Well, yesterday was a version of this, except she lost all color and turned gray in her face and ears. She completely stopped breathing. Her oxygen was in the teens. It was terrible. We were really shaken for the rest of the evening. Thankfully we were here and able to come up with a plan for next time. The RT got us an oxygen line to bleed into her cough assist, which will inflate her lungs and push in oxygen at the same time. 

5.25.21 Ileostomy Day 5

Well we learned how to change an ostomy bag. That was trickier than I had expected. Partly tricky because it was fresh and there are small wounds on her belly and stitches around the stoma. It made me feel lightheaded to be messing around it, around a recent surgery site on my girl. I will get used to taking care of it of course eventually, but it was a difficult beginning. 

Aimee is doing really well herself! She has increased her feeds to about 67% of her goal and decreased her IV fluids again. Unfortunately she maybe losing her IV again. The foot has swelling in it. The nurse has been in here every hour through the night to measure it, keep it elevated, and replace a heat pack on it. We just need it to hold on a tiny bit longer! 

The surgeon wants her to be a full feeds for 24 hours to see what her ostomy output is at that point and decide if she will be able to stay hydrated without any additional medication. Before the surgery, we had originally hoped and planned to be going home yesterday. 

 

Best of all, Aimee was alert and happy last night. She was engaged and even gave us a couple of grins. Ah that feels good to see!! 

5.24.21 Ileostomy Day 4

I skipped yesterday on accident. Time and dates are always so difficult to track inside the hospital. How many days? What day of the week? 

Yesterday we had a couple of concerns. One was low blood pressure, which continued through last night. She hasn’t has any other shaky episodes though, so we are just monitoring it. 

The other concern was hydration, feeds, and fluid output. This one is still a work in progress. The ileostomy output has changed quite a bit since yesterday morning, so I am less concerned. She was losing so much fluid through it that they were considering adding another medication to help retain more water. 

Prior to surgery the hope was that her slow motility would actually work in her favor. That it would allow her body to absorb enough fluids in the small intestine before dumping it out. As of yesterday morning she was dumping out tons of liquid, so we were concerned that she would just dehydrate herself. We’ll see, but I am hopeful that the output seems less and that our original thinking will still be correct. 

It feels like a new world we are moving into hydration wise. Before we were giving her giant amounts of laxatives and also flushing out her large intestine with saline once a day. She needed more fluids to compensate. Now we are draining everything out at the end of her small intestine, so she loses the opportunity to absorb water through the large intestine. Not sure how things will settle and how much fluids we will need to give. Will it be more volume than she can handle receiving through the j-tube or will it be less than she needed before? Thankfully the surgeon said that they won’t send us home to sort this out on our own. They want to be sure that she is able to stay hydrated and that we know what volumes are needed. 

We still have some work to do to increase her feeds all the way and get her off of IV fluids. Today we hope to increase her rates more. We have made it to about 30%, which is enough that we are going to lower her IV rate finally later this morning. Baby steps. :)

Later today we are hoping to have more training on the ostomy, particularly on how to change the bag. We’ve been emptying it, but much more to learn!  

I am getting really hopeful and excited as Aimee becomes more alert. Last night she grinned at us and watched part of a movie. So good to see her smile. This new ostomy is going to be life changing for her I think. Of course she will not have to have her flush or her enimas. That is 2 hours plus of her life back! Also she will be so much more comfortable with less bloating and cramping. Less infections! Less crying! Less pain! Hooray!