1.31.22 Trach Floor 98

Rounding the final curve and the cheering has already begun among those around us. Ed joined us so that we can cross the finish line together. Aimee had an amazing day today full of energy and smiles. She has been interactive, which is rewarding to see. She is definitely feeling the change in vibe. 

We’ve been making our rounds through different specialists and team members asking last minute questions, making little changes, and setting up plans. Going home is intimidating this time. A lot has changed. It is almost difficult to deal with the cheering. We aren’t leaving much behind here. All of the care is coming with us. However, we will be home. And our focus will be on keeping it that way. Getting to the point of taking Aimee home has been a big group effort. We are so grateful for each person who has shouldered that effort with us. Thank you. 

Living here is feeling normal. Leaving is completely unreal and, as I mentioned last time we discharged, we are numb to a lot of feeling. It is difficult to picture what life will look like from here. I am hopeful that we will able to spend this Spring and Summer outside planting seeds and picking flowers. That Aimee’s nose will be a canvas of freckles. That all the kids will be piled in Aimee’s bed listening to audiobooks. That Aimee will laugh through family movie night. That she will get to soak up the warmth from the fireplace. How will it all work in the real world? How will we be able to manage her care and keep her safe? I don’t know, but we sure will surround her with love and laughter and music and snuggles and flowers and fresh air every single day that we can. 

I am cautiously looking forward to celebrating Christmas with our whole family together this coming Saturday. Together. Ed and I. Aimee and Caleb and Elliot and Walter and Louisa. All of us. Between now and then there are some mountains to climb that feel daunting. It doesn’t seem that being home could possibly bring rest to our traumatized hearts, yet I hear in my inner ear almost daily Jesus words, 

“Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.””

‭‭Matthew‬ ‭11:28-30‬ ‭NLT

I believe that we will not carry our pure gold girl alone. 

1.30.22 Trach Floor 97

Not quite as peaceful of a recovery day as we had hoped. After the long dry circuit trial yesterday of 6 hours, Aimee got a mucous plug today that blocked off a portion of her left lung. It was a helpful experience for us to know how to deal with this at home. The dry circuit is when we take the humidifier off of the ventilator to go portable. Since the vent goes straight into the trachea, the air being breathed in is not naturally humidified by the secretions in the nose/mouth. There is a little device added to the vent to help keep the air from drying out too fast, but it doesn’t add any moisture. Mucous plugs are the potential consequence. 

In happy news, Aimee was able to ditch the hospital gown and wear a shirt for the first time today! Nice to see her in clothes. Another step towards normal.

1.29.22 Trach Floor 96

Today Aimee finally had her bone infusion done! We wanted to have her first dose while inpatient as it can cause seizures, fevers, joint pain, ect. We hope that doing these infusions will help us to keep her from broken femurs in the future. 

Aimee also passed the dry circuit test today and is now on one of her home ventilators. Our checklist is getting very small now. Just a few more items, mostly having to do with orders and handing over care instructions to both the palliative/hospice nurse and the home health nursing company. We have a calm day to let Aimee recover from her bone infusion tomorrow and then will continue forward with the hope of going home on Wednesday morning. 

I am finishing up some watercolor thank you cards for a few of our favorite, most influential nurses, doctors, and support staff. I’m not sure in the real world that I will be able to continue painting, but I am grateful that I was able to have this positive focus during some dark days. The feelings from this past few months are still there to be felt. Bottled up for later. I just couldn’t allow them to surface and still function. Painting allowed me to let drips of feeling seep out here and there onto paper. Side perk, they brightened up Aimee’s room!

1.28.22 Trach Floor 95

Yesterday Aimee was so agitated all day without her regular med schedule. Today she has been doing really well. Very comfortable and alert. Enjoying all of our chatter as we spent the day training on TPN, central line care, ect. 

Aimee is still struggling with keeping warm in the evenings, going mildly hypothermic each night. We have been using a wonderful bair hugger while here, which is lovely because there is no concern for burns on a patient like Aimee that cannot communicate. However, insurance will not pay for one sadly. We do have a heated blanket at home, so we are working on trouble shooting how to safely and effectively keep her warm for discharge. 

The double lumen PICC was removed last night, so all that remains is a single lumen tunneled line on her chest, which is already in use and we will use at home. We received a new intermittent suction machine to trial for home use. This was such a fight. Just a few month ago we were told that we could not go home with gastric suction. Her whole team, especially the care coordinator, fought really hard to find a way. And now, we are getting close!  

Aimee is snuggled up with a heated blanket, a sweater, and a weighted blanket tonight. She is enjoying The Sound of Music on her ipad. 

1.27.22 Trach Floor 94

Aimee is safe and back with me. She is getting caught up on meds and we’re working to get her comfortable. 

1.27.22 Trach Floor 93

Aimee is having her procedure right now. And I just finished the most difficult conversation of my life with the anesthesiologist. She felt that ideally we would wait 8 weeks to do the procedure, but did agree to do it now. She REALLY pushed me on our code status and detailed possible scenarios. It was agony to have to repeatedly say that chest compressions are a hard no. ECMO, injections, intubation, literally everything else is fine right now, but no compressions. Yes, but do I understand that this is not routine life, her heart might stop from this or this or this during the procedure… yes, I hear you, but with her fragile bones… All to say, I am so grateful that both Ed and I have completely discussed this issue and feel very strongly (especially after our class that simulated compressions) that we are making the right choice for Aimee. We are making this choice with a heart of compassion, respect, and great love for our daughter. I am SO grateful for this together decision. Yet, it still is searing my heart. 

I will update when the procedure is finished soon. 

1.27.22 Trach Floor 92

Quick update: After all of the prep yesterday and early this morning, IR bumped her case to tomorrow. We are all pushing back as much as possible to try getting her in this afternoon at least. This was the first time it all got to me and I sobbed for a good 10 minutes in frustration. The emotional rollercoaster on top of the exhaustion and the intricate planning… 

1.26.22 Trach floor 91

My head is spinning. Lots of planning and details today. So many I couldn’t possibly communicate them all clearly. I had a hard time filling Ed in throughout the day and keeping my brain straight. The bottom line is that there are many preparations in the works and many people pulling for Aimee to be home soon. The medically complex care plan is being finalized and orders are officially being placed for all the different machines and supplies. The letter has gone to our local emergency response to give them Aimee’s trach safe data and airway protocol. We have a letter to send to our power company from the hospital about the life sustaining, medically necessary equipment being used in our home for a child. I’ve gone over nursing orders and tweaked them. I’ve edited the emergency plans. We have worked with several different people today getting splints, molds, and braces up to date. 

Aimee is in preparation mode too, but simply for tomorrow’s procedure. She has had a bath and wipe down. The team has a plan in place for her meds and her nutrition. However, we have not gotten the approval of the anesthesiologist who will be on for tomorrow. They can decline to do the procedure even after she is down in the IR for it. Until that point, we just have to plan that they will be reasonable and continue forward. Once Aimee comes safely back with a tunneled central line, we can have more confidence. And breathe a very much collective sigh. 

While Aimee is hopefully having her procedure here tomorrow, Ed will be home meeting with the homecare company for what they call “the big teach”. Simply they will be delivering the home vent and associated supplies, making sure that we have a safe location, and going over all of the protocol with Ed at home. 

I spent some time in phone communication with the state developmental disabilities today. They are rather behind the times and are just now suspending her services from now until we are discharged. 🙄 

Aimee and I will hopefully be starting up her midnight meds soon, which will be ending around 2am and the be starting her morning meds pre-procedure a few hours later at 5:30. The plan is for a 9:30 start time, but we will see what the day actually brings. 

1.25.22 Trach Floor 90

Just set up the bair hugger to warm up Aimee. Again mildly hypothermic, 94f. Not even sure what to make of this sudden temperature instability. She has had trouble with regulation when the environment changes (getting a fever in the summer days, ect), but this is happening while she has been snuggled up in bed in the same temperature controlled room all the time. Odd. 

I was able to speak with anesthesia today about Thursday’s line placement. We discussed the risks again. She agreed to write an approval note, but in the end it is the decision of Thursday’s anesthesiologist. 

While we are here, Aimee has twice a week TPN bloodwork. At home the team wants to move to once a week. Hospice can do every other week, so we will need to bring her down on the opposite weeks. Thankfully, if she can remain stable for a month or two, they will consider allowing every 2 week bloodwork. 

In the discussions with our attending, they have agreed for this time to treat more as we would at home. We have asked that they not chase every little symptom, but watch and wait for things to develop. Today, Aimee had bloody trach secretions. They were able to put this new agreement to the test by sitting on their hands for today to see if it resolved or turned into an issue. So far it seems to be resolving. 

1.24.22 Trach Floor 89

Busy day of planning and discussions. A lot of scheduling. Despite the low temperatures, the team is really hoping to proceed with her placement on Thursday. I finally was able to have a conversation with IR who will be placing the line. There had been miscommunication about the process and we still have to get anesthesia on board. I don’t get to meet with them until Wednesday or even Thursday morning unfortunately. Really praying that nothing delays this procedure. 

If all goes well, we have lots of things to accomplish between now and discharge. Several training sessions on Thursday, Friday, Tuesday, and Wednesday. Aimee needs to have 5 days on her home ventilator before we go. We also still need to do her bone infusion, hopefully on Monday. If this all goes to plan, we hope to be discharged on Wednesday afternoon and admitted to the hospice care program through providence that evening at home. 

Aimee continues to have some temperature instability. There were also more changes made to her vent settings today as they try to optimize her numbers before we go. More bloodwork to do, more orders to have written. 

1.23.22 Trach Floor 88

Around here the staff are very superstitious, particularly about commenting on how quiet or peaceful things are on the floor or how well things are going. We aren’t superstitious, but I may have spoke a little soon yesterday when I said things were quiet. They WERE quiet during the day. As soon as the evening rolled around… well we were up all through the night. Aimee started a rash on her palms and feet. Her feet swelled up more, even her eyelids were swollen. She became hypothermic. We had to do blood draws and so many temperature checks. She had to use a warming blanket. We needed repeat blood draws. We had to do a sterile catheter for a urine sample. We talked to residents so many times. 

Phew. After a very long, sleepless night, things settled down. Her temperature stabilized. Bloodwork was reassuring. Her rash went away. Her swelling decreased. She has been fairly comfortable and smiling sweetly today. She still has a pretty violent cough, which has caused some bleeding around her trach site. AND this evening, her temperature dropped again. The team wants to continue her major course of antibiotics for a couple more days. Praying that nothing comes between her and the central line placement on Thursday. 

1.22.22 Trach Floor 87

Quick update tonight, as it was a mostly quiet day. Aimee is having quite a bit of swelling from the huge doses of antibiotics (1100 mls a day!). We are hoping to be able to stop them tomorrow night, but will have a blood test done first to determine if the infection has responded. We finally got to see the results of the mucous test and it lit up the board in red with 9 different results (5 different cultures and abundant gram negative and gram positive results). Hoping we can find a way to stop these infections from reoccurring. 

1.21.22 Trach Floor 86

Ed’s Post

Another week down. Rosa and I have both said that this is starting to feel normal, so I decided to do some math 🤔. Turns out we have been here (including this summer’s stays) one week shy of 6 months, 25 weeks. No wonder this feels normal. I usually try my best not to look too far ahead or to dwell in the past. Rosa even bought me a shirt that says “Stay present in today”. Honestly, that mentality has really helped me through the years with Aimee, because we just never know what tomorrow is going to bring. This is true for all of us, tomorrow is not promised, but somehow with Aimee this seems to stare me in the face more often than not. 

I say all of this, but I have to admit looking into the future scares me 😟. It scares me to consider the day that I have to look at Caleb and Elliot to tell them that we have to take Aimee back to the hospital and they ask “how long?”😭 What a crushing blow that is going to be for them and us. After we got home this summer, we had to take Aimee to get a blood draw and we even took them with us. They started to panic thinking that it was going to turn into a stay at the hospital. Who could blame them? When we left the house on October 2nd, we thought it might be a few days, that is now 112! What we thought may not even be an overnight stay, turned into 42 days this summer 😔. Louisa recites “Daddy hospital, Daddy help Aimee, Mommy home?” But how do we better manage this situation? 

I was discussing discharge again with the Care Coordinator today and one of the things they offer/ require before you can go home is that we are “in charge” of Aimee’s care for 24 hours straight. Her comment was, “I don’t think there is a single person in this hospital that thinks you guys need to do this.” The thought that went through me head was if they had to take care of Aimee without us, she would never leave, ever. To be fair this requirement is usually for the parents that are not here all the time 💁‍♂️. It struck me because of course we can take care of Aimee for “24 hours” 🙄.  That being said, we need to be here with her and we need to be home with the other kids too. I just don’t see any other way to do it. 

We did not make any progress today with scheduling for discharge, but should be able to early next week. Aimee didn’t make any progress today either, but also didn’t need any additional oxygen. We did have a first this morning, at about 4:30am, she managed to clog her Trach completely to the point that the Vent was unable to get any pressure in and Aimee wasn’t breathing. The machine alarmed quickly and I was able to clear the Trach and all was good. Just a little bit of excitement 😮‍💨.

1.20.22 Trach Floor 85

Ed’s Post

Tell me if you have heard this one before: I think we might get to go home in two weeks. 

It doesn’t even seem real and I kind of don’t believe it. However, today we did schedule a central line procedure for next Thursday at 11 am. I feel like I should be more excited about this, but the reality of it is that we have gotten this close or closer a couple of times before and had it fall apart on us. I’m hopeful that tomorrow I can work with the Care Coordinator once again to pencil out a potential discharge schedule. 

By Thursday next week we should have run the course of antibiotics and Aimee should be in a really good place. Today, with the help of her new vent settings, we were able to transition her off of oxygen and she rested well. She is not back to being herself yet, but honestly, for all that she has going on, she is doing quite well. It’s really amazing to see the difference between her care with the Trach/vent compared to the BiPap during times of sickness. 

She spent a couple of hours comfortably sitting in her wheelchair this afternoon. 

1.19.22 Trach Floor 84

Ed’s Post

Grumpy Bird Goes for a Walk. 

That was me today. Pretty much from the word “go” this morning. Let’s just say that the nurse today and I did NOT get along 🤨. She finally graced us with her arrogant presence about an hour and a half later than she should have been in here this morning. All the while the IV pump alarm was going off and Aimee was late to start meds that take multiple hours. After only being in the room for about 15 minutes, she  called in the risk nurse from the ICU to assess Aimee, without discussing it with me first! She hasn’t worked with Aimee in over a month (and at that only a shift) and yet felt that she knew Aimee well enough to need to escalate on her own 😠. So many other things happened today with her, but that was the one that really got me fired up. Aimee is fighting not only Tracheitis, but pneumonia too. We have already discovered this and been in consult with the medical team and the pulmonologist. If Aimee was worsening and needed more and more support throughout the shift, then we would call in the risk nurse. 🙄

Okay, moving on. Pulmonology came by today multiple times to discuss the recurring Tracheitis and how we can help prevent it in the future. This is Aimee’s 3rd case in 3 months. Essentially they don’t know what causes it. However, there is an inhaler antibiotic (similar to the prophylactic antibiotic we are using to prevent UTIs), which he recommended that we could use every other month to help prevent Tracheitis. It is not something they normally prescribe, but given our goal of staying home, they were willing to recommend this treatment for us. 

We also discussed adjusting her vent settings to better support her now. She has gained so much weight and it is a part of how they calculate the settings. The hope is that this increase maybe will help reduce her frequent infections as well. The Pulmonologist worked with our RT today and spent some time trialing different settings. I got my first chance to bag Aimee outside of trach training. 

In other news, we heard back from IR and they are willing to place a tunneled central line for us without waiting as incredibly long as General Surgery was requiring. They actually offered to do it tomorrow! However, Aimee is still fighting this current sickness and we have asked for a time slot early next week. Stay tuned, it does depend on anesthesia agreeing, but it sounds very likely that we could get it placed next week! 

Her mucous cultures grew a bit more over the past 36 hours and showed multiple different bacteria strains. The team has a bit clearer picture of what she has now and they have added another antibiotic to cover the new growth. Now she will need to be on both to cover the different types. 

1.18.22 Trach Floor 83

Ed’s post

Well today actually started last night when Aimee’s temperature dropped down below 35 degrees Celsius. Given her other signs of sleepiness and increased secretions over the last couple of days, the team did a full work up on her, including urine, blood cultures, and a mucus sample. The last blood draw was completed around 2 am, at which time Rosa and I went to sleep (Rosa was with us via FaceTime). By 4:30 am they had ordered a IV antibiotic, because a culture grew from the mucus sample indicating Tracheitis. 😣

Of course the elephant in the room is, does this now mean we have to push back yet again our central line placement? It can’t right!?! This has already been so long and so hard. It was discussed at rounds this morning, which lead me to ask to talk with our MCC and Palliative teams. Rosa and I (Rosa on the phone) were able to meet with them today. After talking about the risk and options, MCC is going to pursue General Surgery to reconsider their requirements knowing that getting Aimee picture perfect right now is near impossible. Our other option would be to have Intervention Radiology place a new larger single lumen PICC line to replace the double lumen PICC she has right now. The second option is not great, but if we truly have to wait two weeks after Aimee’s last oxygen requirement increase, we could be here for months. 

The infection is growing a bit differently than the previous two Tracheitis, but still too soon to tell exactly what it is. This afternoon she needed additional cough assist treatments and ultimately we had to add oxygen. This, plus her lung sounds, prompted the team to order a chest X-ray. It did show some pneumonia. This would explain some of the increased support she has needed. Overall she is still sleepy, but has been comfortable.

1.17.22 Trach Floor 82

Ed’s Post

Another day down and still no scheduled surgery date for the central line. The medical team is putting it on the shoulders of the MCC team to get it scheduled. Kind of irritating, because, if that was the case, why didn’t they have MCC working on it last week 😠. It is really hard to drive home the point that we don’t want to be here any longer than we need to be, on this floor in particular. There are a good number of patients that have either been here for years or that are waiting around for nursing help at home. So, although the team is very patient, sometimes there just isn’t a fire. 

We shall see what MCC can accomplish this week. Of course, it’s only a four day week because of the holiday today. In good news our MCC provider stopped by today to check in even though we were not on her list today. We talked about the need for the scheduled surgery date so she will get on it in the morning. I have faith in her, because she was the one that got our other kids approval to come see Aimee before it was allowed. We just need a date so we can plan ALL of the other things around it. 

Aimee is again sleepy today. The suction machine continues to function. I wish I felt really good about it. I just feel a little bit skeptical 🧐. We did manage to get her into a bath chair and give her a REAL shower for the first time since we were last home. I’m sure it felt amazing. I know I feel better for her 🤣.

1.16.22 Trach Floor 81

Ed’s post:

Today Rosa and I switched, in the parking lot. The kids and I drove down to Seattle and picked Rosa up outside the hospital. We went and had a quick lunch in the car. Then back to the hospital to drop me off. Rosa took the kids home and I walked down the lonely halls to Aimee’s room. This is so hard. I really don’t even have words for it. We have crossed the line that feels like you can’t do it anymore countless times and yet you still continue on, somehow. 

I’m glad that Rosa gets a break from the grind of the hospital and I hope she gets to recover a little. It’s hard to imagine ever fully recovering from this stay. It took us about 6 weeks to feel like we were starting to get our feet under us at home after being at the hospital for 6 weeks this summer. We are rapidly approaching 4 months and we started out exhausted. 

I came in to find Aimee sleeping. She has slept most of the afternoon and evening. The third attempt at the home suction machine has been working so far. I got an average output tonight, which was encouraging. So, we will see what the next 36 hours show us. Tuesday morning the Care Coordinator will come back in to ask how it went.

Here are some pictures from my week at home:

1.15.22 Trach Floor 80

Not much to share today about Aimee. Our big goal for this weekend is to trial the home intermittent suction again. It has mostly gone well so far today, though she did have some vomiting this evening. 

I am heading home tomorrow and Ed is coming to be with Aimee. Sadly no overlap time together this weekend. 

Since I don’t have much to share about Aimee, I’ll share some of the art I’ve been learning to make this week. 

1.14.22 Trach Floor 79

Grief. Feeling it today. 

Thank you for loving us, being with us. For sitting with us in your way. 

Apparently after I came to an agreement with the anesthesia team about doing the central line placement, the surgeon pushed back asking that we wait longer to reduce risks. Finally there has been an agreement of waiting 14 days without any additional oxygen needs. Yet, they still haven’t scheduled it. Thus, we don’t have an exact day, but no earlier than the 24th. And this is the big puzzle piece right now on which the rest of the puzzle is waiting. Frustrating that a cold can cause such a cascade of challenge in Aimee’s life. 

Our handyman went to work yesterday (thank you to my sister-in-law Karla for watching our kids). He created this wonderful built-in for Aimee’s room to hold her locked medicine cabinet, her refrigerator for her meds/TPN, and a little desk space. I really love my handyman. Looking forward to spending time while I’m home next week sorting through Aimee’s paperwork and organizing her space in preparation for her homecoming. 

1.13.22 Trach Floor 78

First, the happy update, Aimee kicked her legs playfully for the first time since spine surgery this summer. She was quite engaging and so cute today. Laughing and smiling. Yesterday we increased her clonazepam and it seems to be allowing her to be more comfortable.

She had a little extra time today with the trial iPad holder. We really should find her a good one to use at home. It was wonderful to have it easily in her field of vision and of touch.



She was able to facetime with Louisa today too. Louisa always insists on saying “hi” to Aimee every time I talk with her. 

We are working with the case manager on the suction situation, the TPN situation, and the orders for discharge. There are a lot of people working really hard to get us home, but there are also so many pieces to get into place. Still no central line placement scheduled. :( It feels very discouraging and miserable right now. 

1.12.22 Trach Floor 77

Kind of fun/sad, this month we have the same resident that we had during our stay over in medical/River this summer. Nice to see a familiar face. Our attending this week we also had this summer. Our nurse tonight brought me a bubble tea from her favorite shop. There is a kind of community aspect to being here. It is not where we want to be, but it is nice to see familiar faces wherever you may roam around the hospital campus. 

I met with so many different specialists today, Audiology, GI, Rehab, Occupational Therapy, plus the case manager, social worker, discharge RT, homecare representative, and, of course, the medical team. Sometimes I sit down to journal here about our day and my head is spinning with information. 

This is Aimee’s hospital growth chart. As you can see, she has gained weight very rapidly this past few months. Nearly vertical. She is already on less calories than she should need metabolically. It seems that we were pouring calories into her through her gut, she was working hard to digest it, and not gaining much weight. Now the TPN is so easy for her body to process in comparison that she needs a very low level of calories to maintain. One of the GI and nutrition teams goals right now is to reduce this dramatic weight gain down. A problem we have never had with her. 

Still no word on scheduling the central line. 

We trialed a new machine for the gastric suction today. Well, the same exact machine, but a different one. It worked well for a couple of hours, until it overheated. 😳🙄 I tried it on the lower setting tonight, it stopped working correctly after about 40 minutes. So… back to the drawing board for how to do intermittent gastric suction at home.

1.11.22 Trach Floor 76

This is discouraging. I am having a difficult time getting the old fashioned intermittent suction machine to work. Aimee is nauseous and uncomfortable. It is just not functioning well enough to get much from her stomach. :( The company will bring a new one tomorrow just in case it is this particular machine, but… well we’ll see if that is the case next. 

I was able to meet with anesthesia first thing this morning. They were quite hesitant to allow us to schedule the central line placement before 4 weeks following the virus. We had a long chat and she agreed to compromise at us waiting 1 more week, as long as I understood and agreed to the risks. Now that we have that agreement, we are working on getting on the general surgery schedule for next week. 

There was discussion of doing her bone infusion finally this week, but I asked to wait until after the line procedure. The infusion can cause flu like symptoms and increased seizures. We don’t want anything to mess with that line placement date! 

I am over all of this. Just give me what I need to get my daughter home where she belongs. We need this to be done. 

Aimee got attend part of the homeschool lesson today via facetime. ❤️

1.10.22 Trach Floor 75

Aimee spending time in her chair and trialing a new iPad holder today. We get to be testers for it for 2 days and then fill out a review to tell the hospital what we think of it.

I’m so disappointed. We had to cancel Aimee’s tentative discharge date and cancel the training for TPN at the end of this week. We are still working to convince anesthesia to proceed with the central line. There is an increased risk, due to her recent cold, of bronchial spasms below the trach requiring time up in the ICU post procedure. However, there are also other risks that we have weighed, like a lung puncture and an accidental carodid artery incision. We feel that we have been cautious in putting off the procedure to this point. Tomorrow is 14 days since she showed symptoms of her virus and she has now been at her respiratory baseline for 2 full days. I am meeting with the anesthesiologist tomorrow to discuss risks. 

Aside from working on this goal, the virus that Aimee had messed with her TPN significantly. It slowed her gut function down even more, which caused her gastric suction contents to more than double. Her labs have caused the team to make modifications to her TPN levels of potassium, magnesium, ect the past couple of blood draws. Now that she is recovered and her output has decreased, they will have to remodify based on the new levels. We are trying to find out how long they want those levels to be stable before it would be safe for us to leave. I am hoping that they will say one week. 

One good item from today is that we received the home low intermittent gastric suction machine to trial. I am praying, praying that it works. It is the only one that exists and appears to not have been updated since the 70’s. If it doesn’t work… well I have no idea. It seems fairly finicky so far, though it is nearly silent. 

1.9.22 Trach Floor 74

Good progress today. For the most part, Aimee seems to be recovered with several symptoms resolving from her virus today. I am very hopeful that our team will be able to help us get back on track tomorrow with scheduling her central line procedure and her bone infusion. Otherwise, just a good day with a content, mostly alert Aimee. I am so so so looking forward to taking this beautiful girl home. 

1.8.22 Trach Floor 73

Joint post :)

We are both here for the night with Aimee working on getting her better and making plans for how to have success going forward with her care. We spent the afternoon making lists of what we need in every area of care: ileostomy, medicine pump/enteral, vent, oxygen, trach, replogyl intermittent suction, urinary catheter, diapering, central line care, iv pumps, oral/nasal suction, medications. With longer stays, every prescription has to be rewritten and we have to consider every little item that we will need for her care in that area. Definitely a project to work on together. 

Last weekend we put together emergency respiratory bags to carry with her at all times. This weekend we started re-assembling a bag of other supplies that she would need, like seizure rescue meds and catheters. In preparation for her coming home, we need to work on clearing out her room of previous supplies like formula and feeding bags to make room for the new equipment. Anyone need lots and lots of fiber?? I am hoping to connect with other families who could use the items that we no longer can use. We need to add a small refrigerator to her space for the weekly TPN delivery and her meds. Hopefully the resident handyman (Ed) will be returning soon to make modifications to her home space for the changes.  

Aimee has been awake quite a bit today, interactive, and moving her hands and shoulders. It seems like she is just discovering that she can still move them. Respiratory wise, we have done treatments about once an hour throughout the day. She was requiring quite a bit of oxygen, but this evening we have weaned her back down. She is doing well right now and sleeping peacefully. Hoping this means we are on the positive end of this sickness finally. Our discharge depends on her recovery. We were told by the anesthesia team that we would need to wait 4 weeks post virus before her central line placement could happen. Once she is recovered sufficiently though, our attending can go to bat for us to shorten that timeframe up. Praying that by Monday morning Aimee will be well enough for that scheduling attempt to be made. 

My niece Angelique is with the younger 4 tonight and has sent me a couple of cute photos. Why couldn’t their growing have been paused for this season?!?

1.7.22 Trach Floor 72

Ed’s Post

About the same day for Aimee today as yesterday. Still needing oxygen and additional respiratory therapy. We did meet briefly with Pulmonary and have added in another steroid inhaler that we would typically use at home when she’s sick. Hoping to help her get past this cold so that we can get the central line scheduled first of next week. 

The longer we are here, the harder it is to remember what normal life looks like. Are we really going to get back home? The kids just assume that only one of us will be home at a time. I’m not sure they even remember who I am at work. They hired a temp guy to fill in for me while I was gone and he’s almost done, because he can’t work longer than six months! 

We have had discussions about what’s left before we go home, but it just doesn’t even seem real. It’s hard to even remember what Aimee’s room looks like with her in it. I was home last week and went to get water. It tasted funny, cause it wasn’t the hospital water. We bought a water filter three months ago to have at the hospital, because the water tasted so gross. Now home water taste weird. Rosa’s phone thinks she lives at the hospital and works at our house 😳. We’ve been here so long that we’ve built relationships in the hospital with many different staff members. One of the nurses got engaged during Christmas and was excited to tell us her story. We need to get home so that we can knit our family back together.

1.6.22 Trach Floor 71

Ed’s post 

We did it!! We have successfully completed our Trach training. Today my mom, Annette, and my niece, Angelique, did the last required Trach change. They did great, by the way. Aimee was coughing a lot of secretions up and it was not an easy change, but they did it! I want to take a moment and thank both of them for taking the time to learn this part of Aimee’s care. They both had to restructure their work schedule to get all 12 classes in before we were ready to go home. Also, I would like to thank all of you who helped watch the other four kids so that Rosa and I could both be at the trainings too.

The last part of our training was to go portable. Since Aimee has a cold, we couldn’t leave the room, but we did hook her up to the portable vent on the back of her wheelchair and switch everything over to her mobile equipment. I think we still have some tweaking to do, but overall felt pretty good about it. When we first heard about how long this class was, I thought there was no way it would take this long, but there are just a lot of steps along the way to care for Aimee now that she’s Trach and vent dependent. 

1.5.22 Trach Floor 70

Ed’s post

So just to keep everyone guessing around here, Aimee woke up with a bit of a fever this morning. For those of you following along, yes, you did read that correctly. Last night she was too cold and now she is too hot 💁‍♂️. We were able to get her back down to her base line temperature by some environmental changes. Although, she has needed some oxygen throughout the day to go along with additional respiratory therapies. 

The team did agree to draw blood cultures to rule out a blood infection. We don’t expect this to come back positive, but want to make sure we are not missing anything. Last night’s viral swab did show positive for the rhinovirus, so this could all be from that. Hard to imagine this is all from a common cold. If it is, and I suspect it is, it seems ANY added stress to Aimee’s body is a lot for her to handle now. 

I have to admit it makes me a little nervous to take her home. My mind is a bit of a blur with hand sanitizer, gloves, masks, and disinfectant wipes. We have not had our training for the TPN and Central line yet, but I imagine they will have cleaning requirements for us as accessing her line in a sterile way is very important here. At the hospital we have to wipe Aimee down with CHG wipes and change her bedding daily. My prayer is simple, Lord help us keep Aimee safe and healthy. 

Met with the Palliative team today and officially changed Aimee’s code status here at the hospital to no chest percussions if not responsive. Rosa and I both agree that this is right for Aimee. The Palliative doctors were complimentary of our thought process, of really keeping Aimee at the forefront of our decisions. Last night’s nurse overheard some the conversation between Rosa and I about whether to continue forward with the procedure that was scheduled for this morning. A little after midnight, I finished telling the doctor that we did not want to put Aimee through the procedure. After the doctor left the room, the nurse commented to me that we are doing a great job of making decisions for Aimee. It just strikes me that she would go out of her way to say that. She is not a nurse that we have had often and really our decision was to play it safe. It is very reassuring to have these comments of encouragement. 

PS from Rosa,

I am at home with the other kids this week and wanted to share something fun. The kids have been awarding me with “homemade stars” for each food that I actually make when I’m home. So, if you don’t feel appreciated in your cooking, try my proven method. Barely cook anything for your family for months. They will then be so grateful for anything homemade that they will praise you and reward you with imaginary stars! 🤣

1.4.22 Trach Floor 69

Ed’s post

Today has been filled with lots of visitors. We met with the Physical Therapist and the wheelchair company representative, because Aimee isn’t fitting into her chair super well. Turns out we need all parts, including a new back and seat mold as she has out grown her current ones. Her weight has increased about 35% in the last three months. Also a couple of others things like a new head rest and IV pole attachment. 

Occupational Therapy came by with Aimee’s new splints for her wrist that she was measured for a couple months ago. 

Tonight has been a bit of a whirlwind. Aimee has been pretty lethargic today and her temperature dropped to 94.4 also with increased secretions. Her bloodwork yesterday showed increased inflammation. Thanks to Caleb’s Christmas Eve present to Aimee, a heated blanket, we where able to warm her back up. In the mean time we have done a urine culture, chest X-ray, and a viral swab. So far nothing has come back positive, but she is definitely showing signs of stress somewhere in her body. We have chosen to postpone tomorrow’s central line procedure and let her recover.

1.3.22 Trach Floor 68

Ed’s Blog Post

This has been, by far, our longest inpatient stay and subsequently so it will be the most complex discharge we have ever had. Although we do not officially have a discharge date, we are close. Spent time today working with the care coordinator writing the preliminary orders for the different home care companies. This includes everything from diapers, Ostomy supplies, syringes, all the way down to the tape that we use to hold the NG tube in place on her nose. Don’t worry. Rosa will be helping me go over this list so that we don’t forget anything 😉. 

Beyond just the supplies and equipment, we have one more training left for the Trach, which is scheduled for Thursday. We have been scheduled for the central line placement on Wednesday. Once this new line is placed, we will receive two inpatient trainings and one additional training at home. There will also be a delivery to the house with all of our new home equipment to coordinate as well. Another parameter is that they will only discharge us on a Tuesday, Wednesday or Thursday. 

This all seems like a lot, but the excitement of wrapping this up and going home is AWESOME! To put things in perspective, the hospital will be contacting the EMS in our area to tell them that if a 911 call is received they HAVE to dispatch a paramedic not just an EMT. The power company is NOT allowed to turn off our power, even if we are behind on payment. We will be put on a priority list when power is being restored after an outage. We were even offered a ride home in an ambulance on the day off discharge! This all seems so crazy, but the reality is we are taking home a very complex and fragile girl. We can do this!

Aimee continues to recover from her cold, which is awesome. She woke up this morning with a smile on her face and was interactive with the nurses throughout the day. I am thankful and amazed at how much of an impact Aimee has had on people throughout her life without speaking a word. Some of you have never met Aimee and I wish you could. She is awesome. She is not pretentious. Her smile is so genuine. Her laugh is so contagious that it will make you cry. Though probably not as much as when she cries, that is heart breaking. Aimee has changed my life forever, without saying a word.

1.2.22 Trach Floor 67

Ed’s post

3 months ago, seems like an eternity. We hesitantly brought Aimee into the Emergency Department not knowing exactly what to expect. In three months we have made many changes and we have new goals for Aimee. I’m not quite sure what has been the biggest change but we are getting a good look at what the advantages the Trach brings. Aimee is fighting this cold and doing so well.

Part of the reason we said yes to the Trach was watching how effective the care was. We are able to suction so much deeper, safely and consistently. The cough assist works so well. The fact that we are not dependent on basically one nostril to do the deep suctioning and the bipap is amazing. It’s nice when you can see so clearly that we made the right decision moving on the Trach. We try so hard to make the most informed and best decisions for Aimee.

1.1.22 Trach Floor 66

Tomorrow is 3 months here straight. When we left home to bring Aimee to the Emergency Dept, we told the kids that we hoped to bring her back home in a couple days. This feels out of control. We can hold on for a time, but everything is a mess after this long. All the normal little things that make up regular life: well child checks and dentist appointments, children’s clothes, house cleaning, animal shelter cleaning, end of the fall garden care, body condition, healthy habits, marriage connection, financial record keeping, piles of mail… it is just too long and it is all out of control. I am scared as we finally come to an end. What will we have to face when we bring Aimee home? We have to figure out how to take care of Aimee in new ways and also all the rest. I feel low and blue and depressed. I know that we are doing what is right and good. Yet also, this journey is such a very heavy weight, such a survivor road. We must go on. Praying that when we get there, through this part of our journey, that there will be solid relationship left between Ed and I, also between us and our children. 

Aimee has a cold. We are doing extra treatments and care. It is so amazing to have these great tools with the trach, the vent, the amazing cough assist. Hoping to help her quickly through this.