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! 

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.