7.31.21 Inpatient 34

Riding a rollercoaster over here. Today is an awesome day. Aimee has been awake most of the day at her normal energy level! She got her hair washed finally and I was able to get her weighted blanket and quilt washed. That was such a relief, because with how much time she has been relient on the bipap, we have had a more difficult time with those basic cares.

Her temperature came back up through the night and is now stable. We have no idea why it went so ridiculously low, but... I’m not going to keep chasing it. Today is good. 

No change in her output. Her Attending Doctor and I discussed the GI plan to maybe try increasing her medication again, even though technically she is at the max dose for her weight. Today is our first day completely switched to the lower density formula, so if we don’t see improvement by the morning, we will probably move to an added dose. We are close... just have to get all the way there. 

Aimee and Louisa were so sweet on facetime tonight. The screenshots never turn out sadly. Louisa was kissing the screen and saying “sissy”. Aimee has the biggest grin and was responding verbally. 

7.30.21 Inpatient 33

In today’s edition, Aimee drops her body temperature down to 92.6F. We have gotten her up to 93.5F with lots of heat packs and blankets. Working on getting her a body warmer (I think it called a bear warming blanket) from the OR that they use for prior to surgery. So far the team has taken a lot of labs and samples to see if we can figure if and where an infection might be. Sigh. 

Only other news is that we did receive her new respiratory equipment today. She was transferred over to it and is sleeping the day away peacefully. 

Also, today it has been one month since we brought her back down to hospital. 

7.29.21 Inpatient 32

Holding the course today. I spoke with Pulmonary this afternoon and given that we are seeing some improvement in energy levels and time off of bipap (today she has only been off for 2 hours, but I am hoping to clock another 1-2 more), they would like to avoid doing a more invasive procedure of a sedated scope for now. The chest x-ray this morning showed no improvement in her right lower lobe. We will continue with the added breathing treatments and re-evaluate in a few days. As we see her energy return, our biggest remaining pulmonary concern is the profound desats. Today she has had two episodes with oxygen saturations down 20’s-40’s, turning gray. It is quite scary. 

We are halfway through the formula transition and thankfully she has shown no added discomfort. Still not sure if it is working for the goal of lowering her ostomy output, but time will tell. 

7.28.21 Inpatient 31

Look what I came back to see! This happy girl’s face! 

The CPT combined with saline, cough assist, and extra inhalers, plus some new better fitting masks has finally equaled more energy for this amazing Aimee. Tomorrow we will have new bloodwork and a new chest x-ray, but 6 hours off of bipap today, alert and engaged, has been an incredible improvement over where she has been this past week. I feel such relief seeing her smile and hearing her talk again. 

Today we started the transition to a lower density formula. We hope it will be the final step

to decreasing her output enough that she can manage hydration without any IV fluids. In less than two weeks my family is coming for our annual family camp at our place. We are now feeling hopeful that Aimee will be stable enough to be home. This is what I am praying, that she will be home and we can all be together with family. 

7.27.21 Inpatient 31

*special guest blog post written by Ed* :) 

Today we had multiple rounds of CPT (Chest Percussion Therapy) that dislodged a mucous plug. It seems to have helped Aimee with her breathing and we’ve been able to get off of BiPAP for the evening. Yesterday we were only able to get off of BiPAP for a total of two hours in the evening. It’s hard to see her so exhausted, but glad that we have the tools here to help her get the rest that she needs. We have been rotating masks so that we can offload the pressure from the sore that is on the bridge of her nose. We have someone coming from the sleep clinic tomorrow to bring even more mask options to help us get a good fit for her. 

Tomorrow we will start the changeover back to the original liquid hope formula. Her ostomy output has been lower, averaging around 825 and our target goal is 750. We are getting close, but need to be lower to keep her fully hydrated. Switching back to the original formula does mean we have to go up on her rate of food, but we’ve worked with nutrition to come up with a plan to make the transition over. The process of transition and increase could potentially take another week or so in order to accomplish. 

We are getting closer to getting a new portable Vent/Bipap to accommodate Aimee’s increased use of approximately 18 to 20 hours a day. We had a consultation for the wheelchair today that was supposed to be for her post surgery modifications to the wheelchair. Unfortunately, she was so sleepy we couldn’t get her in the wheelchair, but we were able to discuss the new need of the BiPAP and oxygen canister that will need to be mounted to her chair. 

Rosa and I are set to switch care tomorrow so that she will be here at the hospital with Aimee and I will be at home with the other kids. It is so hard and I want to be in two places at once. It is both refreshing and exhausting to be at home with the other kids without Rosa. I also want to be at the hospital to help with Aimee’s care. Rosa and I have done her care together and I truly value the process of us doing it together. To do it without her is pretty nerve-racking. It feels like a constant barrage of people coming in and wanting to make changes to Aimee’s care or do things that may not align with what we want or what we think is best for Aimee. I always feel like I’m on the defense. I think part of that has to do with the fact that I am the Dad and they assume that I haven’t been a part of Aimee’s care throughout the process. 

The other heartbreaking part of this process is that Rosa and I don’t get to spend hardly any time together. We have a couple of hours of overlap at the hospital which is usually spent discussing Aimee’s care and next steps. I can’t wait to get to actually spend time with my best friend, my wife, and truly the person that I want to spend the rest of my life with. I miss her so much. She is my rockstar. If you’ve been following along with us on this journey, reading her blog posts, you know how amazing and selfless she is. I feel so lucky to be going through this adventure with her and couldn’t imagine doing it with anyone else. 

Sincerely, Guest blogger

7.26.21 Inpatient 30

Today we had a consult with the Pulmonary team. It was really helpful as they looked through the last couple of years of x-rays and the CT scan from the ED. I can’t remember if I have shared yet on the blog, but the CT scan had shown that the lower right lobe of Aimee’s lung is nearly completely collapsed. Apparently, the x-rays from 2019 showed it as open and the more recent ones showed it as blocked, but the CT scan gave an actual clear picture of how badly it is collapsed.

So, pulmonary set out a plan to increase her cough assist to 4 times a day, but add in a saline mist with it. They also are going to use a percussion machine on her right lower lobe twice a day. The hope is that if she has a plug that is blocking air from entering the lobe, this combination will help to break up that blockage allowing air to inflate the lobe again. If this is not successful, they will need to do a scope down into the lung and attempt to manually clear it while also getting a picture of what is happening down in that lung. 

7.25.21 Inpatient 29

Playing a game of wack-a-mole. That is the simile that came up in our meeting with Aimee’s medical team this afternoon. New issues keep popping up as soon as we think we have figured something out. Today was all a recon in response to the 4 times we had to get Aimee breathing again yesterday. Of course, now that we met with them and risk assessment to determine that plan, she had no profound desats today. Oh well, I’m happy she is breathing!

There was definitely discussion of how sustainable this respiratory situation is for Aimee and for us. We don’t know for sure what the right course of action is, but maintaining here while hoping things improve may not be feasible. 

We are moving her around to different bipap masks after a respiratory therapist made a mistake that accidentally created more pressure on an existing pressure sore, which is complicating the respiratory problem even more. 

Unless things improve dramatically in the next couple of days in regards to ostomy output, we will begin a formula change this week. We are going to compromise at trying a less calorie dense version of the real food formula that she already uses. We hope that this relatively small change will be enough. Before we start, we will begin her on a small evening dose of gabapentin to help ease the pain of the switch. praying that this is successful so we can avoid a more drastic change to a sugar based formula. 

7.24.21 Inpatient 28

Sigh. This is getting old isn’t it? I wish I had something interesting or brilliant to share tonight. Aimee and I are sitting in bed together. It’s been a long day of respiratory related issues, dealing with a wound on her nose that has progressed. Now wound care and the respiratory therapists don’t want us to use her primary mask, but when we use our back-up option, we have these very scary episodes where she doesn’t breath. It has happened 4 times today. 

I did have a long conversation with the medically complex care (MCC) team member today. She encouraged me to consider being creative with compromising on formula changes. We don’t have to do one kind or the other. We could agree to a certain percentage with the agreement that there be a plan in place for returning to 100% real food when feasible. 

She also encouraged us to add gabapentin. Many of the MCC team members and the Palliative Care providers have encouraged us to consider it. We were going to wait til after this situation was resolved so that we wouldn’t muddy the waters. However, apparently it can help with the severe gut pain that kids like Aimee have. We are going to discuss it more with her team tomorrow. It could help make the formula changes easier on her. 

7.23.21 Inpatient 27

Not much to report here. Aimee’s team is making a couple of changes, increasing the medication to quadruple the dose and attempting to increase water. They were hoping to decrease valium again tomorrow, but today we had to use a rescue dose. Aimee was having a lot of muscle spasms and a high heart rate. They are concerned that the valium may be adding to the respiratory suppression and causing more sleepiness, but in order to have her awake and engaged, she needs to be comfortable. Such a balancing act. The ostomy output is unchanged. The lung function labs are much better after using the bipap for the extended time. 

This is all so long and so slow and so discouraging. GI is still suggesting a formula change. We are still holding out, but at some point here we will probably compromise at returning her to the original form of Liquid Hope formula that she was on a year ago. We had changed her to a semi-elemental formula that is very calorie dense. The specialists are concerned that it may be keeping her from absorbing water. If we don’t see improvement from this weekend’s changes, that will be the next move most likely. :( If we get to that, I am really praying that it works. It would be very difficult for us to move her to a sugar based formula, which they have been recommending. 

Mostly this is my view here between all the medical staff visits and the cares for Aimee. A sleeping girl. 

7.22.21 Inpatient 26

After 20 hours asleep on bipap straight, she awakes! 6pm seems about time to wake up, right? This is crazy, but she clearly would not come off of the support any earlier in the day and when she was ready, she woke alert and bright eyed. 

We did have a care conference today. We tossed around a few ideas with the goal of getting Aimee home. We are making a few tweaks and hoping she will show us that she can stay hydrated with them. We will try to adjust her fluid intake a bit and reduce her IV replacement. She has made some progress, we hope enough. We are also working with insurance, home care, pulmonary, and medically complex care to get a battery operated ventilator. We cannot get a trilogy as they are currently all recalled, but we will get something similar. If those two goals can be met, we will take her home. We are hoping for next week. 🤞 hoping and praying. 

Excuse the blurry photo, but I am so grateful to see all my boys and my littlest girl throughout the day. It makes me smile. 

7.21.21 Inpatient 25

The care conference busted up right when it was supposed to begin. Somehow the coordinating fell through, but we still ended up meeting with palliative care, then a pulmonary team, then a GI team, the Medically Complex team, and our medical team all in a row. Tomorrow we will try for a care conference again. 

We are rather shaken by our meeting with pulmonary. The head of Pulmonology, whom we have met with ortho several times, said that her chest CT scan looked like she had been run over by an 18 wheeler. He said that her flattening chest was very severe. He does not mince words. Her respiratory status is worse and probably will be for at least 6-12 months or it may be her new normal. Ideally we need to use bipap as much as possible so that all of her breathing muscles, heart, and organs can get rest. This will allow her to build up reserves so that she can be as engaged and energetic as possible when she is off of bipap. She is weak and needs that support.

So we need to expect that she will need sleep/rest on bipap for these longer time periods at least for the next several months or longer. Medically Complex Care is going to work towards getting us a ventilator with a battery so that we have a safe way to go home from the hospital and to live her life out of bed. 

Happy to be back with my girl again. Ed did an amazing job the past few days on his own doing day and night shift. I am hoping that going home will be restoring for him. 

It sure is hard to leave my other loves. And so hard to be apart from Ed. I miss him. 

7.20.21 Inpatient 24

Today we are increasing medication by 25% by adding a fourth dose. The next two days we will track output to see if this dose makes any difference. 

We have seen great improvement in Aimee’s wounds, both her spinal one and the pressure sore. The ortho team is very happy with how those look. 

On rounds this morning they discussed continued concerns they have over the lab values for lung function. Aimee has been using the bipap most of the days currently, about 18 hours a day. In fact she was on bipap for the chest X-ray that they took yesterday afternoon. They are looking to decrease her valium/diazapam dose over the next several days hoping that her sleepiness will be reduced. 

The medical team is requesting a meeting this week with several specialists to gather together to discuss Aimee’s care. They are hoping to get palliative care, pulmonary, GI, medically complex care, themselves, and us all in the same room to talk through where Aimee is currently and going forward. This terrifies me. Looking ahead of where we are right now is something I have mostly learned to avoid with Aimee. 

In good news going into this meeting, when Aimee is awake, she is in good spirits, interactive, and engaged. She is talkative and even laughing. She is watching shows and clearly enjoying them. She is 100% worth fighting to bring home to live life with her siblings. It is encouraging to see her be this happy so soon after surgery. Last spine surgery she was almost depressed for nearly a year afterwards. No matter what this meeting brings, we will keep Aimee’s best interest, her life at home in the forefront of their discussion. 

I am savoring time at home with the other kids as best I can. It is so difficult to be torn between the two places, but I love connecting with them here. 

7.19.21 Inpatient 23

Quick update after seeing the GI consulting team. They are going to do another medication increase starting tomorrow. They are also going to run even more stool tests to see if there is inflammation in her small intestine that could possibly be treated by a non-absorbable antibiotic. They did not seem to think that doing a sedated scope would provide beneficial information in Aimee’s case, but they may consider wanting us to change formulas. :( 

7.19.21 Inpatient 22

Ed and Aimee are together at the hospital. I am home with the other 4. It is heart breaking either way. I hated leaving her there. Yet, it will be hard to leave the others to go back on Wednesday. If we could just bring her home to all be together again. This is SO hard. 

No progress on Aimee’s end of things. The team is consulting with GI about what next steps to take since the medication increase did not help and since the increase in output the past couple of days has caused her less pain. There is a possibility they may want to do a sedated middle GI scope. Or perhaps they will simply try another med increase. We will find out more this afternoon.

The team is also concerned about some of Aimee’s labs that she had come back yesterday and today. It seems that the numbers are showing her exhale to be less productive than it normally is, meaning she is retaining more carbon dioxide, ect. This has been an issue for quite some time and is why Aimee uses a bipap. Yet, they are concerned about it seemingly worsening. They will be doing a chest x-ray today and comparing it to the one done in the ED 3 weeks ago. 

In good news, Aimee is comfortable and happy again. Enjoying time with Dad. 

7.18.21 Inpatient 21

Disappointed to say that Aimee is heading the wrong direction with an even higher output and more fluid replacement needed. I’m not sure what the new plan is yet. The weekends are a bit slower with no rounds and much less activity. I haven’t even seen any residents or doctors yet this morning! 

In bittersweet news, Ed and I are going to switch roles for a couple of days. Now knowing that Aimee has at least several more days needed here, I need to get some restoration by going home, spending time with the other kids, getting fresh air, and sleeping in a real bed. I hate to leave Aimee here, especially without a clear plan, but I am leaving her in the best hands. Ed will spend a few nights here with Aimee doing her care, making decisions, and spending time with her. I am so excited to go home and so disappointed that I am leaving without Aimee. Yet, I haven’t seen the other 4 in a couple weeks and my heart needs to spend time mothering them. 💛😭

In great news, Aimee is feeling wonderful. Perhaps because her output is up even more. Sigh. 

7.17.21 Inpatient 20

Thanks for the texts and messages! I feel really encouraged and uplifted. Especially thankful since this day has been discouraging. 

We increased Aimee’s medication again yesterday afternoon. Unfortunately so far her output has gone up! We had to replace more fluids this morning than we had to replace the past 2 days. We have to wait until tomorrow to re-evaluate the numbers with the team, but the trend so far today is not looking any better. So far it actually trending even higher. :( :( :( 

In good news, she is feeling more comfortable. She perked up and even enjoyed a movie with me. Probably she is feeling less bloated, because her output is higher. Ugh. Slowing her small intestine down so that she can absorb more fluids is also causing build up and not allowing gases out. :/ but we need her to stay hydrated without IV help. Poor Aimee. The things she needs always seem to be the very things that cause her pain or discomfort. 

7.16.21 Meal Train

A dear friend set up a meal train for us. Here is the link: https://takethemameal.com/meals.php?t=QENB4668&v=c4a414330f&fbclid=IwAR1CJN8oF8se7rnVT-0idzglc4jIBfZh5pie14d1eox9ORAQKbZ0c26deNA

7.16.21 Inpatient 19

A couple of notes to you friends and family: 

A few people have asked about ways that they can help  us. The most helpful thing to us right now is knowing you are out there following along with us. It can be isolating and depressing here. Knowing that you care, that you are praying, and that you remember Aimee throughout your day is a blessing to us. At some point soon meals will be a big help as we are transitioning to Ed being home with the younger 4 kids. We may set up a meal train next week. That would continue to be helpful even for the first week after we get Aimee home. She has meds and other care happening round the clock right now, so lack of sleep will continue to be an issue for some time. A couple of friends have sent us Starbucks cards or there are also gift cards for the hospital room service, both of which are really kind as those 2 are currently our primary source of nutrition. 

In Aimee news for today, we aren’t there yet with her output. Still requiring IV replacement. No additional improvement since yesterday. Today we will increase medication dose again to a higher mg. Then we will track her trends and re-evaluate that change on Sunday. If the dose does not cause enough improvement, Sunday/Monday we can make another change. If this new dose is enough that she can remain hydrated, we could take her home. So... 2 more days. 

Aimee has been uncomfortable and sleepy with a higher heart rate the past couple days. We think she is having pain/discomfort in her gut from all of the changes we are trying. Adding some extra ibuprofen on top of the tylenol and diazepam she is currently getting to see if it helps. Unfortunately the stronger meds we would typically use would affect her digestion even more, which we need to avoid. She does enjoy watching shows on the iPad, so she grouchily watched a bit of Peg + Cat last night for about 20 minutes before falling back asleep.

When you think of us in prayer, please pray for Aimee that she would be able to absorb enough nutrition and fluids. Also, that her spinal wound, her pressure sore, and the sores on her face from surgery would heal completely. Pray for Caleb, Elliot, Walter, and Louisa that they would feel secure, cared for, and loved. Pray for Ed and I that, despite very minimal sleep, we would be mentally clear as we advocate for Aimee, physically alert when we drive back and forth, and emotionally... well that we would have grace for each other and for the staff. The continual confrontation and lack of personal space is incredibly draining. Any moment throughout the day and night doctors or residents or nurses or respiratory therapists or interns walk through the door and we need to be ready to explain, defend, process, and direct. It takes a toll pretty quickly. 

7.15.21 Inpatient 18

Good news finally! After increasing her medication dose yesterday evening, we had our first significant improvement in over a week! Yippeee! We will give her an IV bolus this morning to make up for the extra she lost, but it is half the amount to what she needed yesterday. We are making progress! 

From here we will track for 24 hours to see if this dosage is correct for her, see if she can stay hydrated without more added IV fluids tomorrow. We have room to increase more if need be. Feeling hopeful that we really will go home in 2 more days. ;) 

7.14.21 Inpatient 17

Hello friends, I don’t have anything exciting to share today. It is Ed’s birthday, but it has honestly been a really tough day for us emotionally. We are quite drained. Hopefully soon we can have “pretend Father’s Day”, as Elliot calls our planned make-up holiday, and a birthday cake too. 💛 He deserves to be celebrated. And to get sleep. 

So far the new medication has not helped. We are already going up on the dose this afternoon. Aimee’s GI specialist just happened to walk through our rounds on her way somewhere else and stayed for a minute to made adjustments to the plan. That is great, because she most likely saved us at least a day of time waiting for the first dose to work. Her words were that we can’t do the normal for Aimee, we have to “throw the kitchen sink at her”. So here we are at least tossing a single basin. 

Only other news is that we had a set of spinal x-rays done this afternoon for ortho, since we will still be inpatient tomorrow for our post-op. It is a nightmare set of x-rays for Aimee to do and frustrating to work with radiology. They are not good at accommodations. Thankfully Ed and I were both able to be here for the process. 

7.13.21 Inpatient 16

While I went home today to milk, harvest garlic, and shower, Ed met with the GI team again. Apparently Aimee’s target ostomy output should actually be 400-500mls instead of 800-900 like we thought. This whole time since her ostomy surgery she has been losing twice as much liquids as she should be, but then after spine surgery she was losing 4-5x the amount that she should (1600-1800mls). Poor Aimee, even here in the hospital she has not been getting enough fluids! :( No wonder she has been exhausted and struggling. 

All that to say the amount of fluids that they are replacing has been adjusted and we have farther to go than we even realized. Tonight we add the new medication on top of the supplement she has already been given. She has to be on that dose for 48 hours to see if it is effective, if it is not there is plenty of room to increase it. We are praying that this is the answer, that her output decreases significantly so that we can bring her home. We are desperate to be all together at home again. And so so weary. 

7.13.21 Inpatient 15

Triple dose had no effect (or very minimal). Today we will start a new medication on top of that triple supplement dose. She is continuing to get IV fluids and will most likely get an added bolus as her urine is quite low. :( Praying that this medication makes a difference and we can bring her home soon! 

7.12.21 Inpatient 14

Double the supplement yesterday had no effect. Today we are tripling it. Aimee was beginning to show signs of dehydration again so we are back to replacing with IV fluids. If tripling the dose doesn’t work, we add a new medication tomorrow. 

The Attending started mentioning this morning that we may need to consider switching formula from Liquid Hope Peptides to an elemental formula. She is discussing it with GI. My heart sank hearing those words. Hopefully we don’t even get to the point of having that conversation. It would be so sad to put her on that. It hurts to even think of it in the plan. She has done so well on real food for many years. We switched to a peptide version that is still real food last year (considered semi-elemental). I am praying that either this triple dose of today’s supplement or tomorrow’s medication attempt work so that the question of a formula change stays off of the table. 

We met with the wound care specialist again today about a couple small spots that are draining on her spine incision. We got a few more wound dressing products to hopefully help. At this point, Aimee’s post op appt and x-rays are on Thursday, which will be 1 month exactly after surgery. 

In neat news, one of our nurses had the idea of using a syringe pump (often used in the NICU) for her meds. We spend a couple of hours each day giving meds and this pump could do the pushing for us over that long timeframe. It works great, but the pump costs $600! I plan to see if I can find a doctor to write a prescription for it and see if insurance will cover it. 🤞

7.11.22 Inpatient 13

If anyone is tracking along with all the new movies Aimee is enjoying, last night she watched the new Aladin movie and loved it. Have any suggestions for other movies she would love? We are trying to get her to spend a couple of hours up in her chair each evening and a movie that makes her laugh sure makes that process more rewarding for all. She particularly loves musicals. 

Medically, we are still here. Still hoping to leave in 2 more days. One of these times that I say that it will be true. GI does not feel comfortable sending her home until we can get her ostomy output back to normal. If we don’t, we will have to keep coming back for fluids. We have been adding supplements and changing medications, some of which have helped, some made it worse, and some of which have added secondary issues like clogging her feeding tube. Last night we switched to trying a new version of a supplement that is a fiber with prebiotics added to it. It is more broken down than typical fiber supplements to hopefully not clog the tube. So far it hasn’t decreased her output at all. We doubled her dose this afternoon. Tomorrow we will triple it if it still doesn’t work. After that we have to add another medication. 

It is such a complex process of tinkering where we can only make one small adjustment each day and then stand back to watch if it works. In good news, all of us including her nurses, doctors, residents, and interns, are getting a really good education in fluid management. 

7.10.21 Inpatient 12

Aimee had so much fun up in her chair last night watching ‘Sing’. Her belly laughs are so contagious, even the nurses were laughing. 

Today is a big day. We are trying to go without adding any IV fluids beyond the little 5 mls an hour to keep the line going. We are hopeful to be able to add that small fluid increase through her j-tube at home. We need to see how relient she is on the extra fluids, if she is close enough to not be dehydrated without them. We are getting close with her output numbers, within 200mls of goal. We think she may still need more fiber added, but it is starting to cause feeding pump issues at the current rates and clogging the j-tube is a big ordeal that everyone wants to avoid. 

So... here we are tracking inputs and outputs, giving meds, repositioning, cathing, emptying the ostomy, changing bandages, taking vitals... doing all the things we do at home, but not able to be home. 

It feels like this will never end. So discouraging. We have been here 29 days in the past 7 weeks. 

7.9.21 Inpatient 11

Keep on keeping on with yesterday’s plan. Some progress, but not enough data to say that she will stay hydrated with these changes yet.

We did get to meet with a Palliative care doctor who walked us through the dosing and uses of CBD oil for medically complex kids. We have used a tiny amount of CBD for Aimee for a couple of years and noticed some more cognitive awareness, but we were cautious about using very much without guidance. This was incredibly helpful. We have recently discussed trialing gabapentin for Aimee after seeing how alert and comfortable she was using the high level pain meds post spinal fusion. We were discussing its use with palliative care when it came up that she has been on this low level of CBD. They have seen it to be effective in helping kids with pain, anxiety, focus, tone, and seizures. It was really educational and we are excited to work towards increasing Aimee’s dose to see how she does with it. 

We changed the dressings on Aimee’s back for both her spinal fusion and a grade 2 pressure ulcer on her sacrum. Generally it looks really great. There are a couple small areas up near her neck that we will be keeping our eye on to make sure they heal well. The lower area, which caused SO much trouble last time, appears nearly completely healed. The pressure ulcer is new since surgery and it unfortunately means we need to get up and turn her through the night at home, which we rarely have been doing. Currently we are also giving pain meds during the night so hopefully we line it all up well and maximize sleep for everyone. 

7.8.21 Inpatient 10

A day of highs and lows. We requested more fluids as Aimee was showing a few signs of mild dehydration despite IV fluid replacements for her ostomy output. She got a larger bolus this morning. Ostomy output is down a bit. Farrell is bloody again. We were feeling a discouraged as the doctors told us at rounds that there is nothing that we can do, except be patient. 

And then! What a relief this afternoon! Aimee’s own GI specialist who has worked with her for years and years walked in the door. She listened and heard what we were concerned about. She said that Aimee doesn’t fit into the typical box and we need to assume at this point that her spine surgery affected her gut just like it did last time. Finally someone to listen to us who trusts us and who we trust! Yes, this is not a virus! We needed an actual game plan and now we have one. More med tweaks and adding a supplement with more changes in the wings if these aren’t successful. I am practically giddy with relief to have someone who knows Aimee come in to review her care. Concerns that we brought up with the consulting GI the first days we were here were brushed off. And now they have been acknowledged and respected! Such a good feeling. 

Here is to progress for tomorrow! 

7.7.21 Inpatient 9

Not too much to share today. Aimee is holding steady. All the way up on her feeds, but still requiring IV replacement for extra ostomy output. She is about 50 percent above her normal output still. Much improved, but not enough to go home. It feels like everyday we are planning for 2 more days here and it just continually gets pushed back a bit. We are waiting on her timing, when her body is ready. 

The current theory from the attending doctor is that she had a post surgery ileus, but that due to the ileostomy and Aimee’s neurogenic gi issues, it did not present in a typical way.  

Thankful to be here with my girl, but... missing home and the younger kids so much. It hurts to be away, to be separated.

7.6.21 Inpatient 8

Aimee woke up with a smile today, which was so sweet to see! 

Just small changes today. Went up on her feeds. Had her G/J change replaced in Interventional Radiology as it was causing some issues. We are seeing somewhat of an increase in her ostomy output and a tiny bit of blood in her farrell. Holding steady here overnight. 

The plan at the moment is to attempt to add back in one of her meds tomorrow that improves stomach function, but we will have a new attending doctor starting, so we’ll see if the plan changes in the morning. 

Making progress! 

7.5.21 Inpatient 7

Upward trending today. Adjusted meds some more yesterday and increased food again this morning. Her blood test this morning showed that her hematocrit was a bit lower that yesterday, but this afternoon the bleeding has stopped and the ostomy output is normal! 

Unfortunately the med that we stopped allows her stomach to relax and process some of its own fluids. We are seeing her have difficulty tolerating any stomach acid at the moment, so her farrell has to be kept on the floor, which means the output there is 3 times the amount that she can lose. At the moment we are not going to worry about that, but instead focus on increasing food. If the ostomy stays stable and there is no more bleeding, we will try adding that med back, which will hopefully slow the amount of fluids lost that way. 

This is all a long process, but we are seeing some positive progress today, which feels hopeful. Last night she was able to sit up in her wheelchair to watch a movie for 2 hours. She was awake, but barely. Today, she has mostly been reliant on bipap again and sleeping all day. A step forward and a step back. Thankfully the steps forward are currently longer strides. 

7.4.21 Inpatient 6

Happy Independence Day friends. 

Not great news today. Aimee’s stomach ulcers have started back up again with quite a bit of blood in the farrell bag coming from her stomach. The doctor ordered an additional blood draw this morning and her hematocrit is quite low. Not blood transfusion low, but just as low as she was post surgery transfusion. Significantly lower than normal. Shoot. They are tweaking more of her medications and dropping her food ratio back down to where she was yesterday morning. 

Ed stayed down with Aimee last night and I went home to sleep, shower, see the kids, and milk. It felt so good to get fresh air, to snuggle the kids, and pick fresh berries and flowers. I even got to bring a jar of hydrangeas back for Aimee. 

7.3.21 Inpatient 5

Good day today overall. Aimee is awake. Irritable, but mostly awake. She has been having stomach cramps, but I’m not sure if it is her trying to finally clear out her colon or if it is something else. It is 6 weeks post ileostomy surgery and we still haven’t seen the colon empty out. A tiny smear last night after cramping made me think maybe that is causing some of her distress. However, we also increased her food intake a bit more today, so she could be cramping from that. She is still having too much output in her ostomy, so still reliant on IV fluids to stay hydrated. She is hydrated though!! 

Calculated today and Aimee has been here at Children’s for 3 weeks out of the past 6. That has taken a lot of help from family and friends to care for the animals and for Caleb, Elliot, Wallie, and Louisa. Thank you for helping us. Thank you for all your prayers and encouragements. Thank you for being on Aimee’s team. 

7.2.21 Inpatient 4

I was wrong about not dumping fluids anymore. She still is continuing to dump through her ostomy. It may have decreased a bit, but still much more than normal. We are having to give her about 1100 daily in IV fluids on top of her j feeds to keep her hydrated. She is finally hydrated though. She finally this evening produced an actual decent amount of urine when we cathed her. So glad to see pee! 

We believe that the stomach ulcers have stopped, as the farrell contents are no longer bloody. In other good news, she finally kinda woke up this evening for a short time. Spent a couple of hours off of bipap! Even gave me a couple of little droopy eyed smirks. 

So some progress. We’ll see what the night brings! Ed went home to get a good sleep, see the other kids, and milk the cow. Aimee and I are here ready for a night of vitals, turning, output tracking, and meds. :) 

7.2.21 Inpatient 3

Yesterday after rounds we met with GI (not actually Aimee’s specialist). They made a couple of changes to meds and decided to give her gut a rest by cutting her food with half pedialyte for 24 hours to see if we could stop her losing so much fluids and stop the stomach ulcers. They stopped her daily antibiotic, which she has been on for 3.5 years! Ugh! So glad to let that one go. It has been an ordeal to even get during covid shortages and caused us so much frustration. Plus, letting go of a med is rare and wonderful. 

So far the gut rest seems to be working. She isn’t dumping out fluids anymore. However, now she isn’t producing hardly any urine. She has been sleeping really peacefully with amazing heart rates, but anytime we try to rouse her and take off her bipap, she either desats or gets really agitated and shaky. She has only had it off for about an hour in the past 24. Granted, the ER experience was a lot, so maybe she is just recovering from that. 

The GI team feels that she must have some GI bug causing all of this. They don’t think it is related to her surgery at all. Seems like a really big coincidence to me, but whatever is the cause so as long as she recovers and we can bring her home safely without worrying about turning back around to bring her back! 

7.1.21 Inpatient 2

Well we are here again. It is very deja vu as last week our room was directly above our current room. Same layout, same horrible view. Except this floor has been remodeled to have somewhat updated fixtures. 

Last night (this morning?) we met 3 different teams all trying to decide who should admit us. We first met with the PICU nurse practitioner who had actually overseen Aimee’s care post spinal surgery. Together we agreed that Aimee wouldn’t need to be admitted to the PICU currently. Then we met with the surgery team. Then the medical team. Apparently it was a difficult decision that took hours. :/ I kind of understand as it took Ed and I a few minutes to decide who to call yesterday to discuss our concerns. It’s a bit of a complicated conundrum. We finally ended up in the medical unit, though Aimee’s orthopedic surgeon has been in today already to check in with us. 

At this point we are working to make sure that Aimee is fully hydrated and not in pain. Her heart rate has come down. She is asleep on her bipap with oxygen with a heart rate of 92. Much improved. She has had and continues to have excessive amounts of fluids put in. Once she is fully hydrated, we are going to work with GI on how to keep her there with possible medication changes (maybe some decreases even) and as much fluid increase as we can. It is not simple and we don’t want to leave until we feel confident that we have all the tools we need as well as good perimeters for when she just needs to come back here for fluids. Not being able to give bolus enteral feeds at home makes this quite a real possibility to watch out for going forward. 

Man we are shaky and tired. Hoping to maybe take turns getting some naps in this afternoon. Zzzzz

7.1.21 Inpatient

After 15 hours in the ER, we were finally moved to the medical unit at 5 this morning. We are exhausted. Actually we were exhausted before we got here. Now we are super exhausted. Spent the past 2 hours working through admission and now it’s time for nursing shift change and then meeting with doctors. 😩