6.18.21 Spinal Fusion Day 4

The really good and most important news is that Aimee is doing amazing this morning. She is alert, currently off of bipap, comfortable. 

The bad news is that we were pushed out of the ICU in the middle of the night. It’s okay, but wasn’t great timing for Aimee. We had been told at rounds in the morning and again in the afternoon 1-3 more days and we would move to the floor. We were getting close, but hadn’t quite reached respiratory baseline and that was our goal before being moved. However, apparently there were no free PICU beds in the state of Washington and they needed to have a certain percentage cleared out. We fell into that percentage and couldn’t wait to be moved til morning. Frustrating, but even more so because Aimee was already settled into her bipap in a deep sleep. Her bipap doesn’t have a battery so she had to be taken off it to move through the hospital. Really it was not the best patient care as she had to be stimulated to keep breathing and she was super shallow. Now she is stable and well, but I feel upset. We didn’t really have a choice, but I wish I had pushed back more for Aimee’s sake. Maybe we could have taken more time to get her transitioned to one of their vents for the transfer at the very least. 

Anyways, it was a disappointment to be taken so dramatically from full one on one nursing care in the ICU to being stuck in this new room with us doing all care and little nursing support. The real point is that Aimee is safe, she is not being left without care, she is making amazing progress. 

She had the deeper of the two drains removed this morning and the superficial one should be removed tomorrow with her first dressing change. Our plan for today is to continue to work towards time off bipap, to add in a bit more food, and to increase her tolerance of greater inclines in bed toward the goal of sitting in her wheelchair in a couple days. 

We’re wearing our Aimee shirts and are so grateful to be here with our girl. 

6.17.21 ICU Update 5

Aimee had a good day overall today. She took in a tiny bit of food, she took a couple of breaks from bipap, and she tolerated sitting up a bit more. We had some pain crisis, some retching, but really overall she is improving quickly. We are impressed and so grateful. We don’t have cultures back yet on the bloodwork, but her other numbers are all improving. We were able to get the arterial line out and the foley catheter. She still miraculously has all 3 IVs. Crazy that they are all still functioning. Her dressing looks great and the deeper of the two drains is supposed to be removed tomorrow. 

She is more alert this afternoon and even interacting a tiny bit. A little bit of talking type sounds. Definitely loving hand holding. 

The view outside of Aimee’s window is one of the prettiest we’ve ever had here. 

6.17.21 ICU Update 4

Okay night. Some desats, low blood pressure, and low body temperature. They are doing blood and urine cultures this morning just to rule out an infection. Today we are going to attempt to get her sitting a more upright position, going to trial a break from bipap support, and hoping to start a bit of food. A big day! She is definitely still out of it. She hasn’t been alert again, except to be jumpy or uncomfortable, so we are cautiously moving her forward while also recognizing that it is still very early. 

6.16.21 ICU Update 3

What a long day! Aimee has made lots of progress since this morning. Her pain is majorly improved, which is such a relief. She is grouchy and uncomfortable, but actually had a period of semi alertness in the evening. She doesn’t panic at the slightest touch now. We haven’t been able to do any breaks from bipap yet, but the team wanted to get pain management under control first since her breath holding seemed related to that. I am expecting that at tomorrow’s rounds they will decide to trial some time off of bipap. 

We were able to get some enteral pain meds this evening. The IV meds are great because they act quickly, but they seem to cause a lot of peaks and valleys rather than a steady control. We are hopeful that with the new combination she will be able to rest comfortably tonight. 

PT came this afternoon and inclined her bed slightly, which causes some retching so we did have to add a nausea med. Tomorrow we will be meeting with the PT and equipment company to see if her wheelchair back rest will still work for her given the change in shape.

Blood pressure is extremely low again this evening, so constant monitoring and more IV bolus on top of her maintenance fluid. Her puffiness has just started going down too. :/ She is definitely more pale. Her drains, particularly the deeper one, have continued to produce blood, but are slowing down. Her labs are looking better, though still low in a few areas. She has particularly needed several doses of magnesium today. 

Overall, we are hopeful and more optimistic about tonight. Miraculously we have the same night nurse (a repeat is so infrequent), which helps so much as she is already familiar with what Aimee’s pain looks like and what will help best. 

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.