5.22.21 Ileostomy Day 2

Good things today. A little practice emptying the ostomy bag. A little bit of j feeds started. Managed to spend a couple of hours off of bipap. She has had a few shaky episodes and has low blood pressure, so we are going to add an IV bolus this evening in addition to the continuous IV. 

Tomorrow we will work on increasing the feeds a bit more. We are taking it really slow, not even doing her vitamins or non-essential meds so that her GI system is not overwhelmed. She is having discomfort even with the bit we are trying. 

Lost our first IV due to infiltration, which caused pretty major swelling in her arm. Thankfully Ed caught it pretty quickly and we got her arm bands cut off as they started digging into her. 

She is understandably quite sore and tender, but no big pain crisis and overall a calm day. Ed was able to be with us last night and is now at home with the other 4. I am so grateful to be here taking care of her as she recovers. Focusing on just her for a few days is rewarding. She is strong and we are all so blessed by your prayers and messages. 

5.21.21 Ileostomy Surgery Day

Aimee is out of surgery and stable. She has been extubated to her bipap with oxygen and that is going well now. They used a nerve block and that seems to have made a big difference for her so far. Her heart rate is nice and low. There are 3 small incisions and a new stoma exactly where her Cecostomy tube was before. We are already seeing output, which is crazy. For tonight she will continue on IV fluids and we may hopefully be able to start her on some water/food tomorrow. 

5.12.21 Ileostomy

We have agreed to an ileostomy surgery next Friday, May 21st. I am excited to have it done. It will be incredibly freeing for our family. Aimee will not have to have 2 hours of her day taken up with sitting on a toilet chair to only have leaks and issues between times. Her amount of infections should be dramatically reduced! She will be free to spend her days outside and on adventures again! 

We are a bit nervous about trying to do it so close to the spine surgery, but it will certainly make wound care so so much simpler! I am going in tomorrow to meet with a nurse for training on the care of the ileostomy. It is a bit of a whirlwind, but we have been praying that God would close the door if it wasn’t the right course to take ahead of the fusion. Aimee is strong and in great health, aside from the blood counts issue. May angels watch over her and protect her from harm. May she continue to be healthy, happy, and strong. 

5.11.21 Hematology

It isn’t often anymore that we meet with a new specialty. Aside from a recent appointment with Palliative Care, we haven’t added a new specialty for a few years. I actually enjoy learning the new terms and parameters, being educated on a new part of our complex bodies. I don’t enjoy adding a new specialty when it means new problems, a new diagnoses for Aimee though. It is scary to find a new issue, a new battle. 

We met with hematology for the first time today. The Neurologist has been tracking Aimee’s bloodwork and was concerned about her low white blood cells, specifically her absolute neutrophil count (ANC). The low end of the normal range is 1500. In January Aimee’s ANC was 592 and yesterday’s blood draw showed that it has now dropped to 448. In August of 2020 it was normal at 3,000. The specialist we met with today explained to me that Aimee is now considered at a high risk for infection with a particular concern for blood infections. Due to her low levels, we need to adjust our protocol for any symptoms of infection. Rather than a wait and see response, we need to bring her into the ER for blood cultures promptly with any fever and most likely start immediately on IV antibiotics. Unfortunately, Aimee doesn’t regulate temperature normally and does not usually have a typical fever response to infection. Her temperature may even drop down instead of go up or she may simply become very lethargic. This makes it trickier to make a set of protocols for her. The plan is that with any symptoms we find concerning, we will talk with the hematologist on call to decide if we need to immediately bring her into the hospital. This feels like a big shift and is kind of disappointing. We have been doing so well lately at avoiding the hospital with all of our wonderful respiratory equipment and her J tube feeding. 

Aside from this change in protocol, we will be adding in regular blood draws so that hematology can gather more data and track her progress. There is a possibility that she had some type of viral infection several months ago and is very slow to recover, though we haven’t seen symptoms of that. If it is so, this may resolve on its own. If not, if we continue to see her numbers drop down to 200, she will have to have a sedated bone marrow aspiration done to try to determine the cause. 

We do plan to proceed with the spine surgery. The hematologist did not feel that we needed to cancel it, though they will check her blood counts again the week before surgery. I have not heard anything from the RPM clinic regarding an ostomy surgery. I am assuming this means we will not be able to fit that in beforehand, but hopefully tomorrow I will hear officially. 

5.10.21 Surgery Clinics

Quick rundown with more concrete details to follow soon, I hope. Ed and I tag teamed on a full day of tests and appointments today. 

Aimee had an abdominal x-ray and then met with the Reconstructive Pelvic Medicine surgeon to discuss options going forward for bowel care. Either an ileostomy or colostomy. The surgeon agreed that this is the right decision for going forward given the options we have tried, the infections, and the restrictive life it is all causing for Aimee. We either need to get this surgery done in the next week to 10 days or wait until the Fall. It would make recovery post spinal fusion MUCH easier if we could do it ahead of time. We are waiting to hear from the scheduler on if there is possibly any opening we could fit into in that timeframe. In the mean time the surgeon and the GI specialist will consult on which procedure would be best given Aimee’s motility. 

Next we met with the anesthesia clinic to review systems and discuss day of surgery details. They were on board with fitting in a GI surgery if possible. There are a few outstanding items, but overall we have the green light for both surgeries from anesthesia. 

Next we had spinal x-rays, which showed that all of Aimee’s hardware was intact. Aimee and Ed then met with the Pulmonologist and the Orthopedic surgeon for a pre-op. This was a lot of details about the surgery, the wound, the closure, the recovery in ICU, the recovery on the floor, ect. There are three main areas of concern: the wound, GI systems, and pulmonary. All of these are potential problems following this major operation and all are problem areas for Aimee in particular. We are all doing our best to have good plans and detailed directions in place, but some of it will just depend on Aimee and how her body responds and recovers. 

Lastly, we had lots of bloodwork done, which is always tricky on Aimee. She is a hard poke even for the experienced magicians at childrens. They are checking her bloodcounts, her carbon dioxide, her seizure medication levels, thyroid, ect. Lots of blood. 

Tomorrow, Aimee and I will meet with hematology to discuss her bloodcounts. We also hope to hear back from the surgery scheduling on if we can fit in the ostomy surgery or not. 

4.23.21 Hello Again

Hello dear friends and family. It has been quite some time since I have updated Aimee’s blog. Many are the reasons, but as it seems there is a new busy season ahead, it is again the simplest way to make sure that I am giving updates to everyone who loves our girl. 

We found out last fall that Aimee’s growth rods are maxed out/no longer functioning. With the help of her surgeon and her pulmonologists, we have decided that the next best step is a full spinal fusion rather than replacing the growth rods. She is now 12 years old and has only a small amount of spine growth remaining. There are concerns about Aimee’s respiratory future as her chest wall is becoming more flat and her lungs more compressed. We want to proceed with this final spine surgery while she is in the best health possible to maintain as much function as we can. 

This surgery is really big. New rods will placed and secured all along her spine with bone grafts throughout. It has not been an easy choice. We have met with palliative care and processed our goals and fears as best we can. Neither Ed or I want to do this... and yet we both feel that it is the best choice for Aimee’s continued health. 

 

Unfortunately, as we have now scheduled this major surgery and planned the year around this hospital stay and recovery, we have hit a couple of snags. One is that at this same moment, her Gastroenterologist has decided it is time to move to a colostomy. We were hesitant before, but have become increasingly overwhelmed with how difficult this area is. For Aimee’s quality of life and for our own, it must be done. But what to do? We have this major spine surgery looming. Could we possibly squeeze it in ahead of time and majorly reduce our risk of infection after the spine surgery?? Is it safe to do so? We don’t know yet. We will be meeting with the other surgeon soon to decide. If it is not safe or possible, we will still do it, just later in the year. 

Oh and another snag. I met with Aimee’s Neurologist yesterday. She is concerned about recent bloodwork showing a negative trend. White blood cell counts and absolute neutrophil counts are really low. She will not give her okay to anesthesia until we meet with hematology to find the cause. We certainly can’t open up a wound all the way down Aimee’s spine when she is at major risk for a bacterial infection. 

This is where we are at the moment. A bit uncertain. We are currently planning for a full spinal fusion on June 15th, but there are more doctors to be seen and decisions to be made first.

Overall Aimee is well. She spends more of her time asleep on her bipap machine than ever. She is only awake and attentive for about an hour in the morning and about 6 hours in the afternoon/evening. On a good day. 

Yet, when she is awake, she is home participating in school with us, snuggling with her siblings, taking walks outside, and enjoying family movie night on the couch. We sure love Aimee and pray continually for her healing. 

2.12.20 New Wheels

I have great news! Aimee got a new van and we can all fit together again. We even have 2 extra seats! We’ve been able to go to church, on a field trip to the museum of flight, and several appointments. It is really amazing. A bit of a learning curve for me, but I’m getting there.