6.30.21 ER 4

We are currently still in the ER getting a 3rd IV bolus (a total of 1800 mls of fluids on top of her normal j tube feeds!). They are working on getting a room for her on the general pediatrics service so that we can work with GI in the morning on a plan. It is too complicated for us to figure out with an outpatient team from home. 

Aimee seems much more comfortable and she is peaceful, but her heart rate... still high. 

6.30.21 ER 3

Aimee is stable. She has had a full battery of tests. 

We brought her into the ER because we talked through her symptoms with the Ortho nurse team and decided she needed to be seen. Her heart rate has been higher and higher every day. Even asleep on bipap it was in the 150s at times and off of it up in the 170s (normal asleep is is 60s and awake is 100). Her farrell (stomach drain) has had more output and it is bloody. Her ileostomy output is doubled and watery. Her urine output was really low. Her secretions were thick. She was making odd jerky movements. She has been lethargic.

Our best guess was dehydration, but once you come to the ER they have to rule out everything. Since we got here this afternoon they have done a catheter urine sample, stool sample, viral nose swab, chest x-ray, lots of blood tests, multiple regular IV placement attempts, EKG test, multiple ultrasound IV placement attempts for large 20 gauge needle, and a chest CT scan with contrast. She has had a fluid bolus and now her heart rate is down to 130 while she snoozes. We have ruled out lots of scary things. Her blood tests showed potential blood clots, so they checked for a pulmonary embolism. That has thankfully come back negative.

Now that they have ruled out many scary things, they want to just give her more fluid to see if that brings her heart rate down even more. We just want to get a clear answer on if fluid is the problem and then also get an action plan for what to do about it. We can’t just fill her up and take her home. If we do, we’ll just be back to do this all again in a few days. 

Ed and I are having a ER date picnic while we wait. ;)

6.30.21 ER 2

Going in for a contrast CT of her chest. What an ordeal! Praying that we get a clear answer to what is going on in Aimee’s body. 

6.30.21 ER

We are in the ER with Aimee. Several concerning issues that have just become worse over the past few days. I’ll update more once we get her checked out. We need help getting her stable, but I’m hoping it is simply dehydration causing the myriad of issues. 

6.25.21 Taking Aimee Home

She did it! She made it through her trial and we are bringing our girl home. 

Please continue to pray specifically for wound healing, no more spasms, and clear lungs. 

6.25.21 Spinal Fusion Day 11

Aimee needed bipap through yesterday afternoon to keep her sats up, but after more respiratory therapy she was able to breath decently without it in the evening. She was given a new IV and a fluid bolus. We did respiratory care this morning and she is stable. Her heartrate is high still, but everything else looks good. As of this morning, she is fully up on her feeds. We are asking to be discharged to take her home. 

Please pray for her wound healing in particular and that she would remain stable at home. She is slow to heal wounds despite her great nutrition. We are going to be watching that long wound from t2 to pelvis like a pair of hawks. Especially Ed. :) 

6.24.21 Spinal Fusion Day 10

What a morning. Aimee got our hearts beating for sure. 

Last night we had a successful 45 minutes in her wheelchair. We were doing so well that the orthopedic team said that we could be discharged. However, after discussion, despite wanting to be home, we decided it would be best for Aimee to get rest before attempting the trip home. We were all set to leave this morning. The nurse even pulled out her remaining 2 IVs. 

Then this morning Aimee’s heart rate started climbing way up. She was having quite a bit of secretions. Then her oxygen dropped and we couldn’t get her back up despite catheter suctioning, cough assist, 12 liters of oxygen, and bipap. The charge nurse couldn’t hear any movement in her lower left lung. She called in respiratory therapy and the rapid response team. They got her stabilized again and breathing well, though still more labored than her normal. 

It seems like maybe she had a deep, thick mucus plug. Maybe a bit of dehydration and fluid in the “third space” still. So, we had a new IV placed and a bolus of fluid put quickly through. She is now resting great on her bipap. And we are letting our heart rates come down. 

When she wakes back up we will re-evaluate what to do from here. We are so glad that we didn’t take her home last night. We would have had to turn around and bring her back this morning. 

6.23.21 Spinal Fusion Day 9

We did it. The big x-ray has been conquered. It took 6 of us and a hoyer lift! Here are photos of the results:

Aimee was exhausted by the effort and we have let her relax through most of the day on her bipap. We had to meet with several different providers today anyways so it was a perfect chance for her to rest. We talked with palliative care, with general surgery/RPM for a post op from her ileostomy, the ortho surgeon, and the ortho nurse practitioner for a dressing change. 

We plan to get her up out of bed in a few minutes to spend an hour in her wheelchair. Continuing to stretch her and all of her muscles that were cut or stretched to become accustomed to sitting upright. 

6.22.21 Spinal Fusion Day 8

Oh happy day!! 

We have talked with everyone today. Or close to everyone it seems. A plan was set up this morning and it worked. Honestly, way way better than I even hoped it would. 

The ortho team changed her oxi back to dilaudid (hydromorphone), which is much stronger. A morphine level pain med, (except that morphine itself doesn’t do anything for Aimee). We had been using it up in the ICU, but ortho represcribed in an even higher dose than before. This morning on top of the valium/diazepam that she has been having every 4 hours, they added a big dose of dilaudid. Ed and I (and the team) expected that we were probably knocking her out, but really needed a win, so we all agreed to the plan. 

Once those meds kicked in we moved her to her wheelchair. She was in it for 20 minutes and dozed a tiny bit, but was fully rousable. Heartrate stayed decent around 110. O2 was great. Once we put her back in bed she only had a couple of very mild spasms and no retching! Then, oh then, she was awake. Not just awake, alert, engaged, looking around, talking, even laughing a bit. For hours!! 
The child life specialists came in with a bunch of toys and tissue paper. She played! 

And then this evening, we did it all again. Gave her all the meds. She sat in her chair peacefully for 30 minutes. 

And now she has been back in bed with no spasms and happily awake playing!! 
We are in awe! She is feeling amazing! We are so thrilled with how great she is doing after how bad the last 2 days have been. 

Tomorrow we need to have a big sitting x-ray done, which is a tricky challenge. Then in the evening we need to have her sit in her chair for an hour trial. Our hope is that if all of that goes well, we will get her another decent night’s rest and be in just the right place to drive her home. We hope for only 2 more nights here!! Incredibly wonderful. 

6.21.21 Spinal Fusion Day 7

Forgive my simple post this evening. I am exhausted and having a difficult time with rational speech and thought. Aimee finally got rest at 4am this morning. We were pretty desperate to have help from a doctor last night. The weekends are less than ideal in that regard. What a relief this morning when the ortho team walked into our room and it was the Nurse Practitioner who had helped us so much here with the wound vac, even coming to our house to help with wound care. So great to see her and her team. She was immediately an advocate for us. She adjusted meds and times and doses. She consulted with rehab and with the medically complex team and the surgeon. They were all pretty amazed at the severity of the muscle spasms Aimee has been experiencing. 

This morning at their suggestion, we gave her valium first before transferring to her chair. We had her sit in it for 10 minutes and then gave her tylenol and oxi when she got back in bed. Spasms started once she was back in bed. Not quite as severe, but still causing dry heaving, ect. Lasted only about an hour. 

We have a new plan for tomorrow. I originally planned to try again tonight, but was encouraged by the team and the surgeon to not push too hard. Aimee has been doing well this evening, so we are hoping to get her a good night of rest and try again in the morning. 

6.20.21 Spinal Fusion Day 6 Update

Say a prayer for Aimee to have peace in her muscles tonight. She is waking up spasming and retching again. We are emotionally exhausted as we try to figure out a solution. 

6.20.21 Spinal Fusion Day 6

This has been a hard day. We worked with PT this morning to transfer Aimee to her wheelchair for the first time. It was successful in that Aimee fit in her chair with the few preemptive adjustments that had been done a few days ago. It was unsuccessful in that Aimee started retching and spasming immediately. We put her back in bed and she continued spasming for 3 hours at least once a minute. Every few spasms would cause her whole abdomen to contract, which made her retch and choke. We gave her tylenol first, and then valium, and finally oxicodone, which caused her fall asleep between the spasms, but they were still waking her up to happen again. We put heat packs along her back muscles. Finally with a second dose of valium she was able to rest. She has been sleeping peacefully now for 2 hours, but we are a bit of a wreck. 

So, once she recovers from this, we have to try putting her back in the chair again. :( She has to be exhausted from the spasming and from the meds though, so our next attempt will wait for tomorrow. I think we will try to give her valium first before transferring. We have to be careful to not give her too much though, because too many meds and then she needs respiratory support. Our main goal right now is to increase her tolerance for time in the wheelchair without respiratory support so that we can safely transport her home (and back if need be). 

6.19.21 Spinal Fusion Day 5

Second wound drain is out and the dressing has been changed. Seeing the long wound down her back... I am shaking as I type... it is hard to feel hopeful that it will heal smoothly after our previous experience. The surgeon did use a different closure that we have never had experience with before. With her growth rod surgery the wound was closed with steri-strips and then after the initial clean out it was closed with staples. And then the wound vac. This time he used a mesh that is attached with skin glue. Supposed to stay on for a couple weeks. He feels confident that we will have no wound issues this time. We feel anxious. 

She is doing well though. Already at 30% of her food intake and nearly moved completely off of IV pain meds to enteral meds. She has been on bipap all day today, but had lots of breaks yesterday afternoon. We haven’t been able to get her up out of bed yet, but hoping she can try sitting up more today. Yesterday we made it to her tolerating 50 degrees for a time in the bed and we need to make it to at least 70 before she could try her wheelchair. 

Ed and I were discussing this morning how different this would all be right now if we had not been able to squeeze in the ileostomy surgery. We are SOO grateful that we did. Issues that she has not had to work through: stool soiled dressing, laxative volume trials, tolerating sitting up for long colon flushes, sourcing equipment for those flushes, and bloating/belly pain. In this regard, this has been the best surgery experience ever. She came into this at the very top of her game and it shows. 

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. 

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.