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1.11.18 Done!

After over 6 weeks, we are officially done with the wound VAC therapy as of today! The wound has filled in nearly all the way and will now just have a dressing change done daily at home by us. And she can finally have a shower again!! Yippee!! :) We will have to continue to watch out for extra granulation tissue and use silver nitrate to burn that back so that the skin can grow. We are hopeful and excited to be moving to this last step towards healing. She will not have to go back into the orthopedics clinic until 2 weeks from now to check over the wound. Then in February will be the first extension of the growth rods. 

-Brenda, ortho nurse practitioner, has been a huge blessing doing weekly wound VAC changes at our home and weekly changes in clinic. Elliot and Walter were there today too, but not pictured ;)- 

In other news, we spent a couple hours in clinic on Tuesday with a PT and the wheelchair company working on her chair. The bigger she grows, the more she twists, the more challenging it is to get the chair to fit her correctly. We’ve been having more pressure spot issues, which could turn into pressure sores when she gets back to typical days spent in her chair. With a new back, seat, and headrest, we are hopeful to see a reduction of these spots and better support. 

Overall, Aimee is making progress. We’ve been having a lot of communication with GI from home to make different tweaks to her routines and meds. It is all so complicated now, but worth it, as she is less distressed and starting to have periods of alertness. We’re kind of figuring out her new routine while she is at home in bed. As she gets more comfortable, we will start to have her spend more time in her chair and start moving towards returning to school. An intimidating, uncomfortable step to consider, but hopefully Aimee will be able to participate in things she enjoys again soon. 

1.4.18 Appt Day

Walter, Aimee, and I went in for some appointments today. We started in Bellevue Sleep Clinic. Aimee has been having big desats 5-6 times each night. She recently had a change in pressure of her bipap and we are hoping another tweek will resolve the issue. Some kids with low tone are not able to tolerate higher pressures apparently. Seems that Aimee is one who has trouble with it causing her oxygen to drop into the 50-60% range. We also adjusted her doses of melatonin and clonidine that she takes nightly. Her blood pressure has been really concerningly low during sleep and this is a side effect of clonidine. Hoping that lowering her dose will not majorly effect her sleep. 

Next we headed over to Seattle for a wound VAC dressing change. Aimee was really worked up and in pain before the appointment. She had a wheelchair remodel done last week and it seems like something about it is not fitting well. I think the headrest is also pinching her ear to her hearing aid. She calmed down when I removed the aid and gave her some valium. 

The dressing change did not go very smoothly, probably cause we didn’t have Ed’s help this time. We had trouble with leak alarms from the machine that took several attempts to fix. Aimee did not tolerate moving in and out of her chair and kept choking/gagging. However, the wound is continuing to make progress. Some more silver nitrate was needed to burn off excess growth, but otherwise it looked healthy. Looks like there is a good possibility that we may be done with the wound VAC after 1 more week. 

We got out to the van to find that someone had parked on the dashed lines. I had to get her wheelchair up onto the ramp without having room to go directly. It is getting harder to this as her chair just keeps getting heavier. 

A tough day, but we made it home in one tired piece.

1.2.18 Nursing

It has been hard to know what to update, since things have been pretty steadily confusing. Aimee is still nauseous and retching in the evenings. She is still most of the time uncomfortable, sometimes with a low fever, high heart rate, and cramping (we think). She is desatting through the night again. She is rarely voiding urine on her own and isn’t producing near as much normal. We have managed to add 6 more mls of water an hour to her intake. 

It all feels very unfamiliar. We feel unsettled and uncertain. Symptoms we would normally assume are sickness or an infection, are maybe related to her digestive system not functioning properly? A new normal, new processes, more care are all fine as long as Aimee is able to be herself, to enjoy her days, to interact and play. At this point, she doesn’t have very much energy and is rarely awake. 
She has had multiple dressing changes for the wound VAC since we’ve been home and the wound it continuing to fill in. It may move to a wet/dry dressing in a week or so. We are pretty nervous about that transition as it means multiple dressing changes a day (more skin irritation/breakdown) and a higher chance for infection. But, at some point, it will no longer be an option and we will have to move forward from the sealed wound VAC. For now, we are so grateful for it and the huge difference it has made for Aimee’s wound.

In positive news this week, Aimee had an RN start providing care at home. She was approved for 56 hours a week of nursing care through insurance. We chose to use four 10 hour days for now with one nurse and see how it works for our family. It is definitely different, as there has to be doctor’s orders for everything that the nurse does. It isn’t impossible to get orders, but it takes a couple days. It is also a new person in our home, someone that we are just meeting and trying to get to know. We are hopeful that it will be freeing and will help us provide Aimee with the best, most safe care. 

12.27.17 Pictures and Update

I have pictures to share from our long hospital stay, but a quick update first. Aimee has definitely perked up energy wise since we have been home. She isn’t at her normal level, but she is not sleeping all day either. She has even had some happy periods of playfulness. 

GI wise, no changes. She is still having gagging/vomiting episodes in the evenings. She is probably 3 hours short on fluids. We are hoping that an increase in the motility medication will allow us to increase her rates a tiny bit so that she isn’t behind. We are trying to figure out venting the stomach and refeeding contents over a certain volume into her intestines. It is a bit weird, but it is the safer option as vomiting is an aspiration risk and losing those contents creates an electrolyte inbalance. 

Wound wise, she had a dressing change on Monday and will have one on Thursday. She is making phenomenal progress. It is filling in well, though it is pretty lumpy and will probably be an ugly scar. No back modeling in Aimee’s future! As long as it heals completely, we don’t care how it looks honestly.  

Thankfully, Aimee has not yet shown signs of catching sickness from the house. We are praying she continues to remain sickness free! Our Christmas has been unusual and less than picture perfect, but we have been so blessed by friends and family with gifts and support. It is sad to not have that advent and peaceful Christmas time, but we are so grateful to be home recovering! Thank you to so many of you. We have been overwhelmingly blessed by your loving gifts!

A few photos from Aimee’s hospital stay:

Getting off of bipap after surgery. 

Aimee loved borrowing the hospital’s iPad. She is a big fan of watching shows apparently!

Walter growing up at the hospital after being born at home. Such an ironic chain of events for his beginning. 

Aimee’s therapy baby ;)

Daddy defended his girl from anything that might cause unnecessary discomfort.

Added jewelry, a PICC line and a NJ tube.

First experience with IV nutrition/TPN. Made a huge difference in Aimee’s wound healing!

Finally decided to bring our own bath/toilet chair, since there was not a good option at the hospital for us. 

The big boys bringing in Sissy’s chairs.

Felt so good to finally get a shower for her! 

Aimee was pleased to venture out of her room for Christmas Carols with Ciara. 

First smiles.

Thankful for the helpers and visitors we had. 

Aimee’s cousins made decorations for her room! 

Long nights require napping between doctors and nurses popping in during the day.

So good to have time with our boys!

Walter and Aimee could tell we were getting excitedly hopeful to go home. 

We did it. 25 days later we brought our girl home!

She came back with a lot of stuff!

So grateful to be home!

12.23.17 Home for Christmas

We did it. All the t’s were crossed, the paperwork provided, and the discharge okay’d. We brought our girl home for Christmas this afternoon. 

We are numb exhausted. Unfortunately, we also came home to a house with the flu, so an added challenge to the transition. We’re so glad to be here and so excited to sleep in our own bed and SO thrilled to be with our boys. We made it through that horribly long battle... but this journey is not over yet. 

Aimee had vomited again one time last night before the g/j change. She has again tonight at home as well. We are trying to determine how much we need to have her stomach venting and how to manage continuous feeding with such a high med volume. We are hoping that the vomiting episodes are not her new norm as they include desating, choking, and frantic airway clearing. 

We are also learning how to manage continuous cords around her all the time, particularly the wound VAC, as it is not able to be disconnected at all. She now has a minimum of 5 cords/tubes attached to her all the time at home. Not much compared to the hospital, but much more than we’re used to having at home. Basically, please continue to pray for us and for Aimee. Pray that this sickness does not get to Aimee particularly. 

I have so many thank yous to say and pictures to share. For now, I’ll just give one of each. 

Thank you for journeying with us in your different way and ensuring we were not alone.

Aimee and Walter smiling and cooing during our last inpatient night.

12.22.17 Wound VAC34

Crazy day around here. More discussions with the primary team. We were really feeling unsettled. While we wanted to get home, it still didn’t feel like Aimee was in a good place. But, we were hopeful that some resolution would be achieved through the last specialist consult. It just so happened that the consult we needed was with a motility specialist from GI and we just so happened to have already had an outpatient appointment scheduled today with the very best motility specialist in this hospital. She made it over to Aimee’s room this afternoon and left us in a much better state to head home. Essentially, she confirmed our feelings, gave us details where there had been none, and set up a positive plan. Instead of the depressed hopeless feeling after the care conference, we felt justified and equipped. 

One area we were particularly concerned about and that we kept mentioning to the team was that her vomit had food in it. They brushed it off and brushed off that she was still distressed. Basically told us to power through. We were bummed and uncomfortable feeling that Aimee was telling us something wasn’t right. Dr A, our GI doctor, listened to our comments and immediately ordered a follow up x-ray. 

When the G/J tube was placed, the imaging confirmed it was in the jejunum. The follow-up x-ray tonight showed that the tube had looped back around and the end was in the space between the stomach and the intestines (pyloris). One of her vomiting episodes that night had displaced the tube. They were able to fit her into the IR schedule to have it replaced with a longer tube to hopefully prevent a repeat. We were also informed by the radiologist that, just like we thought, if we vent her stomach and see food or she vomits food, the j-tube is in the wrong place. 

The GI specialist confirmed our suspicions that the team was increasing Aimee’s rate too quickly as well. We will need to increase her farther to get her up to fluid goal, but have now been instructed to only increase by 5 mls every 3 days (the team was increasing every 6 hours!!). We will also continue to vent her stomach with any signs of distress, were given new cecostomy concoctions, and were given an increase of motility medication. With all of this, Aimee should not be in a continually distressed/vomiting state. It is still a big changes in many ways for us to sort out at home. However, it is much more hopeful knowing that we don’t have to accept her discomfort as normal, but now have tools to help her. 

The PICC line was finally removed tonight at 9. So, as long as we have a stable night tonight, the wound VAC machine will be switched in the morning and we will finally be discharged!

12.21.17 Wound VAC33

Not too bad of a day overall. Only one episode of choking and vomiting, which only happened after we had stopped draining her stomach. She was fairly distressed for most of the time once we stopped. She also has needed to be cathed all day, but barely produced any urine. We are also still waiting on the second half of her cecostomy flush to be expelled... 9 hours after we originally started it. Otherwise everything was stable. 

Our plan for tomorrow is to have her PICC line removed, to meet with her GI specialist, to fill her medications, and to move her to the home wound VAC. If those things can all be accomplished in a timely manner, we will try to get her discharged tomorrow. That might qualify as a minor miracle, but I know the team is trying their best to get that done. Otherwise, hopefully, Saturday morning. 

At this point, one of our nurse practitioners from the ortho team(who have all become friends at this point) plans to come to our house on Christmas and New Years to change the dressing. Which is unheard of, but insurance is okay with it. They have set us on a Monday/Thursday schedule, but due to holidays, there won’t be anyone in clinic to change it. We’ve been pretty blessed to get to know the whole team of quirky and fun ortho NPs. There are also a few nurses that have been major advocates for us. They are the only thing we will be sad to leave behind when we get out of this place. 

Maybe, one day really soon, we will be able to sleep in our own bed, make our own food, take real showers, sit with our boys reading books on our own couch, and put our sweet girl to bed in her own room. And sleep and sleep and sleep... and sleep.