11.30.21 Trach Floor 35

Papa bear’s blog post

Well, this papa bear has one mission … getting his family back under one roof. My roof. My conversation with GI and the need to get the ball rolling for TPN at home has spurred on the MCC team to put together a Care Conference. We have a couple weeks of TPN training and prior to that we need to place a central line, but before we can do that we need to know what type of central line we need. Seems simple, but the people who write the prescription for the TPN get to make that decision. You guessed it GI. 

My calendar says that tomorrow is December. Sorry for all of you who didn’t want to hear that. 😉November is over. It sounds to me like we need about 3 weeks to accomplish the set up of TPN. That means I want the decision to be made by the end of the week. I have requested that this conference happen this week so papa bear can be in the room. More to follow ….

One of the things that will need to change when we go home on TPN is the ramping up of the rate in order to give Aimee (and us) a break from the TPN. The goal would be to have a break of about 8 hours off TPN. The team is going to start this process now with about 4 hours off. Aimee’s body has to adjust to not being feed 24/7 and there is an adjustment period for that to happen. The other thing that needs to happen is the transition of the rest of Aimee’s meds from IV to enteral, specifically her seizures meds. No plan in place for this yet, but the team is working on it. This is what I’m talking about people! Foresight. Don’t just kick the can! Maybe GI can hear me 🤣. 

We did have another visitor from the Orthopedic department (Dr White, surgeon, came on Thanksgiving). Today was Brenda! She is the Nurse Practitioner that came to our house on Christmas and New Years Day to change the wound vac 4 years ago. She has taken a real liking to Aimee and our family too. She loves to tell stories about Caleb and Elliot walking her dogs in the snow and about Walter being a baby in the hospital. She offered to come to any Care Conference if we needed someone to advocate on our behalf to help us accomplish our goals. 

I also got a morning grin from Aimee. I cherish these moments. 

11.29.21 Trach Floor 34

Papa Bear’s blog post

Throwback to a picture from a few stays ago this summer. When I (Rosa) talked to Ed today after GI left, he was definitely in full papa bear mode. Continue on for Ed’s post… 

G.I. came by today to see how Aimee was doing. Once again it was a different doctor than the one we saw last week. He asked how things were going. I almost didn’t even know how to respond to him given all of the things that have happened up to this point. What was he really asking me? We discussed a little bit about what our recent changes have been and in doing so  made he made the comment about not wanting us to have to go home with TPN. My response was simply, “I don’t see us going home without TPN.” He seemed a little taken back by my aggressive nature, but we have been through so much this year with Aimee’s G.I. system. Their theory of “let’s just wait and see” doesn’t line up with our goals for Aimee. 

All of our other teams are on board and have been making steps towards us going home with TPN at the end of the year. G.I. is the last team that needs to be on board with this decision as they will most likely be the ones writing and caring the prescription for TPN. In good news Aimee’s G.I. doctor that’s been following us the whole time in clinic is now back from leave and had asked for an update on Aimee. It’s nice to know that somebody who trusts us will be helping to make some of these decisions for Aimee. 

In our continued effort to remove the tube from Aimee’s nose we have added another does of gabapention. So far we have not seen a reduction in her output from the NG suction tube. Today she did get a full bed bath and her hair washed. She then took a good restful nap afterwards with her heart rate dropping into the 60’s. It feels great to see her resting so comfortably. 

11.28.21 Trach Floor 33

Ed’s blog post

Well Rosa had to drive home yet again in the wind and rain. Thankfully Rosa and I got two nights together here at the hospital. I think we could be good friends. I asked her dad the other if it was okay if I dated his daughter and he replied with “You better!” Just seeing each other on the weekends and talking on the phone every day reminds me of when we were dating. Some day I hope we can move in together 😉. 

Aimee woke up with clear eyes and we thought it was going to be a good day, but it quickly turned into a sad day with tears. We were able to give her a pain medication that should not affect her gut motility called Nalbuphine. It’s a medication the attending wanted us to try if she was in breakthrough pain. So far it has worked great and she has been resting well.

We talked to the attending this morning and we all agreed to go down on Aimee’s food and water rate to get to a place of comfort. The current goal and hope is to be able to remove the NG tube. The thought was that if we fed her 20mls of formula an hour that it would stimulate her digestion of her stomach secretions. It didn’t work. Instead it seemed to stimulate an increase in the amount of secretions that were produced. The thinking now is that if we reduce the volume down that the production will also go down, but if we also still keep a tiny drip going maybe it will help to digest the lower amount. Today they decreased her from 10mls of water and 10mls of food an hour to 5mls of each per hour. 

On one hand this feels like going backwards, but if she can be more comfortable then maybe her NG  output will go down, which will allow us to quit suctioning her stomach contents out. They have increased her IV fluids to make up for the decreased food and water. And once again we wait and see how she does …

11.27.21 Trach Floor 32

Napping for Aimee. The team added an additional dose of the gabapentin this morning. Despite being tired, we haven’t noticed any improvements yet. The attending said it will take 2-3 weeks to know for sure if it is working and meanwhile we will increase the dose every few days. 

We’ve been cheering up our room with a poster of photos of the family, all the sweet cards of encouragement we have received, and some of my watercolors. Not to mention the santa’s workshop of presents I’ve been making for the kids that are filling up our window sill. One of these days I will have to take portraits of the progress for you to see. Just don’t spoil the surprise. 😏🪡🧑🏻‍🎄

11.26.21 Trach Floor 31

No real changes in Aimee today. She is still not very comfortable. The attending said it may take 1-2 weeks for the gabapentin to help. We are in a bit of a holding pattern until that time. Sometimes waiting in patience is the only kind care choice. 

We were able to get the Dexa scan scheduled (to check bone mineralization), but not until a week from Tuesday. We just have to make sure she does not have any contrast tests between now and then. 

The younger kids are having a weekend with their Nana and Papa. By the looks of it, they are making great memories. Ed and I get to be together with Aimee for the weekend. We are laughing a lot. Mostly at ourselves and our silly misunderstandings that come from tiredness and from being apart. It feels good to laugh a bit. We’ve certainly shed lots of tears these days. 

11.25.21 Trach Floor 30

Happy Thanksgiving. 

Aimee and I had decent day. She started fairy agitated, but seemed to grow more comfortable towards the evening. I hope that all the nurses here caring for her get a chance to see her beautiful smile soon. 

The only medical things for today were starting gabapentin this evening and a bloodwork update. We had discussion with many different doctors and the consensus is that we should try a nerve medication to see if it will allow Aimee to be more comfortable. There are still abnormalities happening with her digestion, but the discomfort is extreme. The hope is that at least it will allow her to tolerate her stomach secretions without pain so that we can remove the NG suction tube. 

A couple of days ago I had mentioned some good news about 2 specific tests. C-reactive protein was one and it had finally dipped all the way to high normal. Well, it has gone up again. Not crazy high like it was when we came in, but a sign of inflammation in her body. The other was her calcium level finally getting to the low end of normal with all of the supplements. It dropped fairly significantly again. Disappointing.

Aimee woke up enough later in the day to enjoy A Christmas Carol Mickey style. I had a surprise apple pie and chocolate turkey delivered by the orthopedic surgeon, which was touching.

An emotionally sad, lonely type of day, but I was able to practice more painting using Let’s Make Art tutorials on youtube. So many good ones. It restores my soul to have this way to create here. 

11.24.21 Trach Floor 29

In a holding pattern. We kept Aimee at a lower rate today. She was still uncomfortable, but not as bad. Her belly has gone down with the decrease by several centimeters. I spoke with the GI team and we discussed trying gabapentin in full doses. It can help some kids that have feeding issues due to nerve pain. Otherwise, they are simply not sure what answers to give us. 

We have some difficult decisions ahead. I spent awhile processing with Palliative care. It is hard to consider letting go of feeding Aimee real food after we have fought hard for it many times. Yet, no matter what, we still did feed her well for many years. And our goal is now to get her comfortable and have more happy times at home, however that looks. 

I hope you have a happy and peaceful thanksgiving. Aimee and I will be listening to holiday music and practicing watercolor painting. It sounds like room service will have a Thanksgiving meal available for purchase too. Happy holiday season friends. 

11.23.21 Trach Floor 28

What a roller coaster! Yesterday evening Aimee was so agitated. She was vomiting and crying. We lowered her feed rate. This morning her NG output was bloody and she was still so uncomfortable. We turned her rate down even further. 

This afternoon she went into the IR for a routine GJ tube change. It did not go well. It turned out that her tube was curled up inside her intestine. Instead of a simple replacement they had to redo it. When they went to redo it, they found that one of the bends in her intestine was too tight of a corner for the tube. It continued to curl back. After several attempts they were able to get it in, but they are not sure it will stay. :/ 

The good news is that she is more comfortable tonight after that change and the bleeding stopped. We are slowly working our way back up to where we were yesterday on her feeds to see if she will tolerate them better now. 

I do have other great news though. I spoke with the nutritionist this morning, Aimee’s bloodwork is finally stabilizing. In particular her calcium levels have been difficult to manage. She is on very high levels in her TPN and also on a dose 3 times a day enterally. This was the first test on the low end of normal since we got here. Also, her inflammation markers that showed her pancreatitis when we got here are for the first time on the high end of normal! Good progress! 

Ed’s doing a great job at home teaching the kids. I love that they get this time with him. His skills and gifts are much different than mine and they really benefit from the combination I think.

11.22.21 Trach Floor 27

Busy day. Aimee still hasn’t settled into her feed rate from yesterday morning. I actually had to pause feeds for awhile this morning to calm her down. She is resting now, but easily agitated. More than anything, we want to get Aimee to a place of comfort with minimal pain. Tonight we are going to increase her CBD by another 25% to see if that will help. Her output from her NG suction has actually increased, which means that our attempts to use a food drip to wake up her gut more are perhaps not working. She is producing stool through the ostomy, but it is actually too much. She doesn’t seem to be absorbing enough. 

The GI team and the Liver/Intestinal Failure team will be consulting by next week to come to an official decision about next steps. The attending is prepared to proceed with sending Aimee home on TPN, but wants the official term of gut or intestinal failure to come from GI. We also need one of the departments to write an order for us and to oversee the TPN from home. We hope that she will be able to take a little bit of food as it will lessen the negative effects of TPN. However, we also have to get the NG suction out to go home and taking that out may actually reduce her ability to tolerate the small amount of feeds we have gained. It is hard to see her be so uncomfortable so much of the time. I miss her smile and her laugh. 

We also met with wound care today. He helped us trouble shoot the ostomy issues we are having as a result of the bloating. He also changed her abdominal wound dressing. It is healing quite well, though a bit of over-granulation. The trach stoma was also reviewed and it is looking great. 

Oral surgery came by to give us their verdict on the tooth situation prior to doing the bone infusions. We had been told by the dental dept that the tooth would have to be removed prior to starting. We really want to avoid any extra anesthesia or trauma, but also feel the infusions are important given her recent fractures. The surgeon said that the risk is low so we don’t have to remove it. Thank goodness! One area that is simple! She should be having her DEXA scan this week to get a baseline of her bone mineralization before her first infusion. 

The case manager warned me in our meeting today that we would not be able to be discharged right at the end of the year, but will have to wait until at least January 4th. Seemed almost comical to be quibbling about such a specific. We haven’t even decided how much nursing we absolutely have to have in order to feel safe at home. We sure don’t want that to hold us here! We’re hoping to get some night nursing coverage, at least a few nights. Yet, we’d rather be exhausted at home together then split apart and exhausted here. 

Another day of training on the books too. We were able to get a basic understanding of the vent, but will be learning all of the settings and what they mean tomorrow. I got to place my first trach. Ed had already placed one 2 weeks ago. Thankfully I’m not competitive. :)

In happy moments, here are a few photos from my time at home. Makes me glad to be with them. We are finishing up our study of France and moving onto Spain. Any suggestions of Spanish recipes or fun things to learn about from Spain? France was too easy to come up with ideas, so we have spent the whole school year there so far. 😆

11.21.21 Trach Floor 26

That 6 days at home was the longest I have ever left Aimee here. Coming back was really hard. Mentally adjusting to the hospital routine and emotionally reattaching to Aimee’s care. I loved my time at home so much and I don’t want us to be here any more. I just want to be home together. This is too much. Yet… another day forward.

Aimee is having a little slow down on her progress today. She has been swollen with some fluid retention, more bloated, and uncomfortable again. We didn’t make our food advance this evening. I am hoping that she will get a good sleep tonight to be ready for an advance at 6. 

She did get to have a nice thorough bed bath today. I even gave her a haircut with surgical scissors. We’re ready to face a new week now.

I had discussions today with both the medically complex nurse practitioner and with our attending about the future. On one hand we have made a bit of progress. We hope by the end of this coming week to be clamping the NG tube and seeing if Aimee can tolerate having that removed soon. It is one thing that we cannot take home with us. On the other hand, the team is preparing for the possibility that we may take Aimee home on TPN. 

There is a lot to say about that with risks and rewards, but essentially they are considering the diagnosis of intestinal failure. If it is decided that some level of longterm TPN is best for Aimee, it would potentially mean a much shorter stay. We could potentially be going home at the end of the year. Without it, the gut stuff could keep us here for extra months. With it we may have more small hospital stays in the future due to risks of infection. Without it we could have some more quite long stays in the future due to intestinal blockages and hydration management. We are praying for wisdom. 

11.20.21 Trach Floor 25

Ed’s blog post #13

I think it’s time for some more uplifting blog posts …  maybe you’ll get one tomorrow since Rosa is taking over after we switch today. She does an amazing job of staying optimistic and really looking to the next step to be achieved. It’s pretty hard to be here thinking through all the things that are either going on or still to be done and not be disappointed about where we’re at right now. Aimee is stable, comfortable, and in a safe place, but yet I’m sad. 

I don’t even know why I’m sad, I mean I do, but I don’t. There’s not just one thing that I can point to as the reason. There are so soo many reasons. I just want to pick her up and run out the doors with her. I want her to laugh because she thinks it funny that her dad is running down the hall with her over his shoulder. I want her to be embarrassed by my dad jokes and roll her eyes at me when I tell her to clean her room. Although I think she would tell me, “Dad, I already did”. I just miss my 12 year old girl I think. She has such an amazing sense of humor and think she would understand mine too. Sorry, this is just what’s on my heart today. 

We have had multiple failures with Aimee’s Ostomy bag where it sticks to her skin. I think when her belly got really distended it actually stretched her stoma so now it’s wider and not as tall. Instead of the stool going into the bag it is tunneling between the adhesive and her skin. Which, as you can imagine, makes a mess and has to be redone. I’ve had to redo it 4 times this week. We normally change it every 5-7 days so that there is less trauma to her skin. 

11.19.21 Trach Floor 24

Ed’s blog post #12

Does anyone know how many days we have been inpatient this year? No cheating going back and looking at all the blog posts … answer is 111 days. As long as my math is correct. That’s a lot of days and months really. I thought we were getting close to 100 and apparently I missed that day. Oh well. 

Today went well. Aimee was pretty comfortable and was able to make her scheduled increases to her formula rate. Now we are at 13 mls. She spent an hour and a half in her wheelchair today. 

We did get an actual weight on her and she is at 37.6 kg (83 lbs). This is a significant increase from the 31 kg we were at before admission. Not sure where she is hiding it. Makes me a bit concerned about how distended her belly still is, but maybe she is just better hydrated.

11.18.22 Trach Floor 23

Ed’s blog post #11

Today did not start out well for either Aimee or I. We had a nursing change at midnight last night that included additional instructions and less sleep for both of us. Only to wake up to find that Aimee’s Ostomy dressing has leaked for the second day in a row. I am definitely missing my Ostomy changing partner aka Rosa. It was also very apparent this morning that Aimee was in discomfort. Her belly was distended and tender to the touch. 

I pulled back her rate of formula that we increased at 6 AM to 10 mls an hour. The team was quick to agree with me and really let me direct what was best for Aimee’s comfort. It’s always so nice to have them respect what we see Aimee telling us. After about 4 hours she had settled back down and has been more comfortable, although still distended and doesn’t appreciate her belly being pushed on, which is something she was okay with yesterday. The team also added some more medication that should help with the lining of her stomach since we were starting to see some bloody output in the NG tube from her stomach. 

Today we had a visit from Palliative Care. It is always so nice to talk with them. The great thing about their care is that they are looking at the whole picture of Aimee, including how that looks for us as a family. As we discussed the different paths that this stay could lead us, they said multiple times how impressed they are with Rosa and I’s decision making for Aimee. It was very reassuring to hear them say that, as it is so easy to question the decisions we make for Aimee. 

Aimee has ended the day calm and peaceful. She even got a full bed bath and her hair washed. Not always the easiest thing to do, but it feels refreshing for Aimee. Or maybe that’s just how I feel for her.

11.17.21 Trach Floor 22

Ed’s blog post #10

Well, it must be the middle of the week, because this routine is starting to feel normal. For the record, I don’t want this to be normal. I don’t want to live in the hospital. Nor do I want Aimee to live in the hospital. The floor we are currently on is different than any other floor we have ever stayed on. Kids truly do live here, for many different reasons, but this is where they live. I don’t want Aimee to live here. 

I don’t think I realized it before, but I really enjoy taking care of Aimee. She is so fragile and complicated in so many ways, but also she is so precious. The love I have for Aimee is truly unconditional. Although it’s amazing when I get just even the slightest smirk or smile from her, I never expect it. I couldn’t imagine her life limited to these four walls. She has impacted our family and me to a point I probably don’t even realize, but she has also touched and change many others lives as well. My guess would be if you are reading this blog that Aimee has impacted your life too. Aimee will not be with us forever, but the memories and what she has taught us will. 

Rosa and I get complimented almost daily on how well we care for Aimee. My thought is usually, well of course we do she’s our daughter. But the truth is, not all of these kids are treated that way, this is why we get complimented on it. 

Okay enough of my rambling, how is Aimee doing you ask? I think I wore her out yesterday. For the most part, she slept the day away. We have continued to make small steps forward and are now up to 10 mls of formula and 10 mls of water. We are now half way to her first volume goal of formula before we try and see if she can handle not having the suction tube in her nose down to her stomach. Five more days Aimee, you can do it! Say it with me, Go Aimee Go! Good night everyone.

11.16.21 Trach Floor 21

Ed’s blog post #9

Today was a new day. Thank God. Yesterday was not my favorite. This morning our power was restored at home and the sun came out. Aimee also woke up with a little smirk on her face. I got her up in her wheelchair and she watched an entire movie and some before returning to her bed! Then she got to visit with Louisa and Walter before our Trach training this afternoon!!

Aimee has now moved to 8 mls of formula and 12 mls of water per hour. Her stomach is a little more distended than yesterday, but her overall demeanor has definitely improved. She was the most awake and happy I’ve seen her! We are going to continue on and see how she responds. Still a long way from going home, but today has helped me feel more hopeful of what is to come.

11.15.21 Trach Floor 20

A day at home. I never want to leave. It is such a taste of freedom. I can do anything: make a cup of tea whenever I want, cook, wash laundry, leave, hug my little ones, go to a different room, play a game, build a fire, go to the store, sleep in a dark room, take a shower, go outside to feel fresh air, stretch. Well, I can do anything save be together with Aimee and Ed. Yet, I could cry for the simple relief of not socializing constantly. It sounds petty to say, but it is exhausting to be constantly ready to talk and build working relationships with strangers 24/7. 

Aimee’s team decided to increase her food by 1ml every 12 hours. Our current goal is to get her to 20mls an hour. At that point we will attempt again to clamp the NG suction in the hopes that the food will have motivated her gut to process the stomach’s secretions. So, tonight she is at 6mls an hour. Assuming it goes as planned, in 1 week she would be ready for a clamping trial again. 

Otherwise, she is holding steady. Requiring respiratory treatments every 4 hours around the clock still, but doing fairly well at that level. She is breathing quite comfortably on the vent and becoming more comfortable with the trach every day. So are we. 

As many of you have had, we had an exciting day at home with exciting weather. Power outage, wind damaged chicken coop, so much water, trouble getting the generator going correctly. I made a silly mistake after I got home last night while milking that just added to the issue. No milking machine tonight or for the rest of the week. Yet, we are safe, dry, and warm in our oddly quiet, powerless house. And we had help from both my in-laws and my parents. And a new friend brought us dinner. And a mystery friend sent us a Thanksgiving package. And I sure love being with these amazing, funny, darling, quirky people. How precious these moments are, even in the storm. 

11.14.21 Trach Floor 19

Ed’s blog post #8 (Let’s be honest, it wasn’t much of a mystery who the guest blogger was)

Normally I look forward to a windy rainy day in the fall, because that means at some point Rosa and I will be sitting by the fire drinking hot coffee together. I would do any of the outside things so that Rosa could stay inside where it’s warm, cozy, and dry. I wouldn’t even mind milking, feeding the animals, filling the firewood or taking out the garbage because I would know there was a crazy fire going inside. Rosa and the kids would be safe and sound inside the house I built with my own two hands. 

Today is different. Today it’s windy and rainy, but I can’t do any of those things. Instead, Rosa had to leave to go home to be with the other kids and I stay here with Aimee. She has to drive home in this nasty weather, make her own fire, milk the cow, and pray the power doesn’t go out. :( She hadn’t even left the room and I already missed her. 

We have spent 96 days at Children’s Hospital this year and we will not leave before the end of the year. This has been by far our biggest test. I am so thankful to be married to such a steadfast woman. She is amazing and has so much grace for me and, believe me, I need it. I am so thankful for our kids and their ability to adapt and allow others to care for them during this time. Please continue to pray for our entire family. Pray that we will ALL be together again. We need each other. 

Aimee has had a peaceful day. We added back in 5 mls of her formula after giving her a break. It’s a slow process, but better to go slow and make progress than too fast and take steps back. 

I want to give a shout out to Angelique and Nate for all they have done for us during this season. This is Nate’s way of looking after our kids. He’s teaching them how to do one handed push ups. Gotta get your workout in wherever you can. 🤣 

11.13.21 Trach Floor 18

After yesterday’s setback, we decided to give Aimee

today to recover. She has been exhausted, agitated, in pain, and dealing with secretion issues all day. The respiratory therapists have been with us quite a bit through the day and night. If we feel that she is recovered enough in the morning, we may give food another go at 5mls an hour. As the attending reminded me today, our goal right now is not to get her on feeds. Our goal is to wake up her digestive system. We are trying to use food in tiny amounts to rouse it. Pushing her harder, causing her pain and vomiting does not aid us in that goal. 

Ed and I are here together tonight before I head home for a week (aside from coming back in for training). We are both exhausted and numb and just weary. There is so much tension in my jaw and neck and shoulders. Yet, it is amazing how when you have no choice, you continue forward. We must be here for Aimee, because of our love for her. We must be home for Caleb, Elliot, Walter, and Louisa, because of our love for them. And so we will. 

One way I am maintaining hope is by hand making little presents for the kids’ Christmas and by starting to learn to watercolor. It is a stress reliever and brings delight to my heart. I can see several autumn trees from Aimee’s room window and this painting I worked on between doctors yesterday is to remind me of all the colors I can see even from here in this unhopeful space. 

11.12.21 Trach Floor 17

This afternoon we replaced 10mls an hour of pedialyte with liquid hope formula. It went decently for the first four hours and since that point she has been vomiting, uncomfortable, and having some respiratory distress. She is still coughing so much and producing copious  and thick secretions. Not great. I am going to switch her back to 20mls an hour of just pedialyte for tonight and reassess in the morning. 

We had another training session today to learn about trach infections, some of the vent features, and how to use the ambu bag with the trach. We each had a turn disconnecting the vent and breathing for her with the bag. Aimee was very patient with us. 

11.11.21 Trach Floor 16

I am hesitant to say this, but I am feeling quite optimistic tonight. Aimee is up to 20 mls an hour of pedialyte. There is discussion adding a couple of mls of food tomorrow. Now, the attending did tell me that pedialyte is absorbed without having to go through the digestive process, so just because she has done well adding in some of it does not mean that food will be digested. Yet, something has gone well and that has brought an increased hope. I am really trying not to ride the emotional waves up and down each day, but it is hard not to get wrapped up in the current trend. For tonight, we have had a success and we needed that win. 

Since we started the CBD back a few days ago Aimee has been so much less uncomfortable and distressed. She did well in her wheelchair for over an hour today. Tonight we were finally able to add in some sleep medications, so I am really hopeful that she will perk up even more in a few days. 

11.10.21 Trach Floor 15

Aimee is doing great tonight. Her bloating is down. She seems more comfortable than she has been in quite some time. She even smirked a bit at her nurse and I. 

Good news, the ortho team took several x-rays of her left femur fracture. It has made good progress towards knitting back together. They said that we can start to take off the immobilizer and only use it for turns and transfers. We can start to slowly bend her knee. In about 2 more weeks we should be able to transfer without the brace. 

The medical team increased her pedialyte to 10 mls an hour. She is doing well with it so far. However, there is a general feeling with the team members that she will be limited in her progress. They really want to get her back on enteral medications and off of the IV ones.  The conversation I had with the new attending this afternoon left me fretful about where this is heading. Big picture though, we just want to get her to a comfortable, happy place in her body. Even if it means under hydrated and under nourished. :( It is painful to consider what this all means. For today though, we have the win of tolerating some amount of pedialyte. 

Ed was able to do the first trach change training today. Ed’s Mom and my niece Angelique did trach care training. We are slowly making our way through the training sessions. Aimee did amazing with it all. She is definitely becoming less reactive to the trach handling and care. 

11.9.21 Trach Floor 14

This afternoon the rain was beating against our window. We had calming classical music in the background. The song that I walked down the aisle to at my wedding started to play. It became the soundtrack to very different dramatic moment of my life as I restrained Aimee’s head movements so that the nurse could attempt multiple times to replace the very large drain tube down her nose into her stomach. 

When I walked down the aisle to Clair de Lune, I thought I understood love. And I did, but… I could not yet understand these moments, these are also love and beauty, but mixed and muddled together with sadness and trauma. In a tiny and continuously unfolding revelation, I discover more glimpses of love. 

Today did not go quite as planned. Aimee’s NG tube slipped halfway out without anyone catching it. It was not functioning through last night so that Aimee was quite bloated and moaning uncomfortably this morning. It was pretty traumatic for Aimee, for me, for our nurse to have to try many times to replace it and go through the different steps to ensure that it was correct. It ended up taking all day long before we got her to a comfortable enough place to attempt the small pedialyte dose. We began that at 5pm finally. It is early yet, but I am hopeful that this will be easily absorbable and add no discomfort to Aimee. If it goes well, we can increase her rate gradually from there. 

11.8.21 Trach Floor 13

Should we be in the depths of despair or in renewed hope tonight? It depends on your sources. The GI team came by late this afternoon and after discussing the unhappy results of our recent attempts with clamping Aimee’s NG suction, we agreed that we would try a completely different tact. We would attempt giving her a tiny hourly amount of pedialyte into her small intestine and see if it spurs her stomach on to deal with its own secretions. 

A couple of hours after this conversation, the resident came in saying that she had spoken with GI. They told her that there is nothing more that they can do. Either this is Aimee’s new baseline or we continue to wait in hope that there will eventually be improvement. 

So… I’m not sure, but I think we will chose to maintain some hope. The team will round back with GI and we will attempt a tiny 1-5ml an hour feed into her intestines starting tomorrow morning. There is a possibility that it will work. At least it is something different to try and maybe… perhaps… there will be magic. 

Aimee had her beautiful hair washed today. She is more comfortable today since we haven’t done any clamping at all. We are working on getting an exception made so that we can start her back on CBD oil tonight or tomorrow morning in the hopes that she will have more peace in her body. 

11.7.21 Trach Floor 12

I wish GI matters were straight forward and well understood. For Aimee anyway, they are a big mystery. Her team decided to give her a break today and not do any NG clamping. In good news, less vomiting, less bloating. Also, her ostomy output has sped up. Yet, it sped up so much that she has produced barely any urine. 🙄 We wait on pins and needles for what ideas GI will have tomorrow to try next. I wish I had more confidence. 

Aimee is still just so uncomfortable. She did manage to spend 45 minutes up in her wheelchair this afternoon and she tolerated it. She has been a little bit more alert, but not comfortable and no where near happy. 

Last moment edit, Aimee just made a few tiny sounds!! This is the first time I have heard her trying to communicate with verbal noises since her trach was placed. They were kind of grumpy sounds, but beautiful none the less. 😍

11.6.21 Trach Floor 11

Ed joined me at home for the afternoon to have a birthday party for Wallie. We were able to coordinate with the staff here to have care and an experienced nurse for a few hours. We rarely leave Aimee here on her own, but we felt that it was important to be at home to celebrate Walter turning 4. It was sweet to take him to pick out decorations and to have banana splits. 

Aimee had another trial today of clamping the NG suction for 4 hours. According to our nurse today she vomited a couple of times. :/ 

11.5.21 Trach Floor 10

Guest blogger #7

Aimee and I had a fairly rough start to our day. Our night nurse was new and kept emptying the ostomy bag throughout the night every two hours and then flushing the contents in the toilet. The hospital toilets are so loud that it woke both of us up every two hours throughout the night. I believe Starbucks paid her to do that so I would drink more coffee. 

Our day was fairly quiet. We did manage to clamp the NG suction for a total of four hours today. Aimee definitely had increased secretions that required suctioning during those four hours and after. She did ended up vomiting about an hour after we unclamped. We will try again tomorrow to clamp for another four hours and see how she responds.

11.4.21 Trach Floor 9

Guest blogger #6

Well… We actually got the CT scan done today as was scheduled yesterday. After all of the scrambling around the last couple of days, I had my doubts on whether it would actually happen. Although, it was scheduled at 9 AM and didn’t happen until 1 PM. The results of the scan showed no more obstruction or clear inflammation in Aimee’s small intestine. There is currently no issue happening in Aimee’s bowels. The GI consulting doctors came in and excitedly pronounced to me that they had good news and stated that everything looked good on the CT scan. However, this leaves us without an answer. I was hoping that they would find something that they could actually fix that was wrong. 

I know it seems weird that I would actually want there to be something wrong with Aimee, but with a test showing us more details of the underlying problem, then we would have a potentially fixable something and maybe this wouldn’t happen again. Part of our fear going forward is that we have no real confirmed reason why her bowels stopped working in the first place. We might come out of this not knowing if this is something that is going to reoccur and put us back here in the same place again. Here’s hoping. 

SO, starting tomorrow we will start clamping the NG tube again with the hope to slowly work towards testing her ability to take on fluids into her small intestine after she is okay with no more NG suction. Hang on people, this is going to be a slow and long process. Honestly, we knew this was going to take awhile. 

Part of the reason why we agreed to take on the Trach was because we knew the gut stuff was going take awhile. We have completed our first week of training, but our last training day is scheduled for December 27th. I think the bright spot for today was after our training, Caleb and Elliot got to come up to the room to see Aimee! This took quite a bit of coordination and included some Hospital policy exceptions, but I think it was really good for the boys to see Aimee. 

11.3.21 Trach Floor 8

Oof what a day! Non stop meetings and issues. Here are the bigger highlights:

Both lumens of Aimee’s picc clogged so she spent half of the day off of her TPN and without medications. There was much drama with this difficulty, arguments about x-rays, hourly blood sugar checks, ect. Some of the drama came simply from many departments being short staffed and covering too many patients. Aside from being behind on hydration, Aimee is up and running again this evening finally.

Pulmonary stopped by to discuss some bloodwork that required changes to her vent respiratory rate. We also talked about the findings from Aimee’s trach safe that showed broncomalacia. There was discussion of doing a sedated scope of her lungs, but pulmonary was able to watch the recording from the trach scope and felt that they were able to see enough data for now. What it does tell us is that Aimee has weakened cartilage in her lungs that tends toward being floppy, trapping secretions and making it more tiring to breath. 

We have been waiting for a few days for Aimee to have an MRE of her small intestine. Really, we have been waiting for closer to 2 weeks, but only a few days since the team agreed to do it. Yesterday we were told it would be that day. Today we were initially told it would be tomorrow. Then we were told there were no openings until the 15th. Then we were told that due to her spinal hardware, the MRE would not provide a good image quality. In the end, Aimee will be having a different CT scan called an enterography, which will hopefully provide more details about the inflammation and partial blockage. This scan should be done tomorrow morning… hopefully. 

11.2.21 Trach Floor 7

One month back here today. 

It has been a struggle for us this last several days with depression and sadness. Many tears. We will not all be together for Thanksgiving, for birthday parties, for Christmas. I have been here hand making little animal families as stocking stuffers for the kids. Without realizing it, I was holding onto the hope that we would all be together then. 

When I told the kids that it would still be a couple of months, Caleb burst into sobs. He wept and yelled for several minutes about how unfair it is to be apart. He is worried that she will spend her birthday in the hospital and had hoped she would be home for his in December. Having to be separated as a family is one of the most difficult parts of this process. 

Ed had an emotional conversation with one of our well known MCC providers today. She feels that this seems to be a change point for Aimee, that they will be seeing more of us. How ironic when we finally got ourselves set up with a team and a goal to keep her home. We want Aimee to not be in pain, we want her to be home, and we want her to be herself. We want to hear her laugh, to laugh with her, during family movie night. We want to have her siblings piled around her listening to an audiobook. At the same moment, we are so so grateful for all of those experiences that we have had together. So blessed that Aimee got to come home during family camp to very happily be with cousins. So so thankful that we went on a family getaway for a few days this Spring. We must not take for granted the happy moments that we have had as we continue to prayerfully hope for more.