11.30.17 Wound VAC5

Aimee had a good night and is alert today. We are just now trying a tiny 10mls an hour of pedialyte again to see if she will tolerate it through her g-tube. Hoping to attempt a c-tube flush in that ackward hoyer lift hover this afternoon, as soon as they can get the right equipment size for us. 

Aimee’s left lung is sounding coarse, but she is managing well with the little extra respiratory support and positioning so far. She is pretty comfortable and has enjoyed watching a few episodes of clifford on the hospital’s iPad. She loved that!

We met with several different people this morning and rediscussed our options going forward. There is a possibility that we will be able to get the wound VAC machine for home use by tomorrow, which would allow us to go home once she is ready to take fluids and safe respiratory wise. Aside from the dressing changes, we will also meet with the plastic surgeon and spine surgeon again in about two weeks to re-assess the wound and make sure we are on the right course. There is still a long road ahead with this wound it seems. 

11.29.17 Wound VAC4

We just moved from the general surgery floor up to the more specialized surgical area. Getting Aimee settled. She isn’t tolerating any fluids yet and is needing extra respiratory support. At this point, we’re just trying to keep her comfortable and figure out how to position her with this big tube coming out of her back. 

We did talk with the general surgical dietician and found out that Aimee is somewhat anemic, but that they needed more blood to get the zinc/vitamin c levels. 

Here is the exciting news: there is an exception for babies who are nursing being allowed to stay with the mom overnight in the hospital! Somehow this detail has never been given to us in past times when it would have been helpful. Such a relief that Walter and I won’t be restricted by visiting hours!!! That being said, we decided to keep the hotel room and switch off spending the nights at the hospital. It’s an extra expense and hard to consider voluntarily leaving, but Ed and I are both so exhausted, running on fumes it feels like. We can come and go as needed, but also get some real sleep hopefully every other night. 

11.29.17 Wound VAC3

All settled into the isolation room with Aimee. She is needing extra respiratory support with higher bipap settings and a bit more oxygen, but overall seems comfortable and stable. The wound area is... well intimidating at this point. I’m sure as we learn about the care and the machine it will become less so. 

11.29.17 Wound VAC2

The procedure itself is done and we just finished meeting with the surgeon. Ed is heading back in the PACU to be with Aimee while they monitor her coming out of anesthesia.

They cut back the contaminated tissue and cleaned out the area. The surgeon did say that there was bone showing, but that it didn't seem to go to the implant. The opening is a football shape about 9 cm long. He anticipates at least a month with the wound VAC, which will run continuous suction. Depending on how it goes, it looks like she will have to have a follow-up surgery at that point. The plastic surgeon recommended a skin graft, but the orthopedic surgeon wants to avoid that as he will be doing future spine surgeries on that same area. He wants the best skin there possible for future healing needs. He is hoping he will just be able to surgically close the healthy skin together. 

As far as this stay, it may take 4-5 days to get the wound VAC machine for home use. The anesthesiologist also warned us it may take a few days for them to feel comfortable releasing her from a medical standpoint. We don’t have an estimate yet, but much of it will depend on how she is doing respiratory wise.  They want to set us up with a home care nurse to change out the sponges and reseal the area twice a week, but apparently it is really difficult to get anyone who is willing to do wound VAC care on kids. At this point, we will have to bring her into the hospital twice a week for this care. 

11.29.17 Wound VAC1

Aimee is back in the OR. Will update as we have details to share. She is pretty out of it this morning. but I think all the respiratory treatments we gave over the last couple days have helped. The anesthesiologist is one that we are already comfortable with and is going to be extra cautious given her respiratory status. They would not be proceeding with the surgery if they didn’t feel that the risk of not doing the procedure outweighs the risk of doing it in her current condition. 

11.27.17 Another Surgery

We took Aimee in for her follow up with the orthopedic surgeon today. We were concerned going in since the wound in her back had increased in size since we saw him last Monday. He had a plastic surgeon and wound care specialists come in and look over the wound too. All of them were really impressed with how well Ed had cared for the area, keeping it clean and neatly changing out packing strips and dressing. Everyone was disappointed to see how much larger the cavity had become. It is now tunneled over 3 inches long and 2 inches wide. It is not infected, but is also not healing. 

The surgeons and specialists decided together that Aimee will need to come back in Wednesday morning for another surgery. She will have the wound area cleaned out, the damaged skin cut back, and the cavity prepped for a wound VAC set-up. She will stay at the hospital until we can get a machine through home care to do the wound suction process at home, which we hope will happen within a couple days. We will also have to bring her to the hospital twice a week for wound care specialists to change out the sponges. 

It sounds like it will be a several week process, but they expect really positive results from the wound VAC. It will cause increased bloodflow to the area stimulating new tissue growth, it will drain excess fluids out, and the pressure will pull the sides of the wound together. It will also require less dressing changes. 

Aimee had bloodwork done first thing this morning to check her seizure medication levels, to check electrolytes, and to check for specific nutrient levels. After meeting with the surgeons, we also met with the general surgery dietician again who had seen Aimee last week. She is specifically concerned about Aimee’s vitamin c, iron, and zinc levels. It sounds like she may put her on supplementation until the bloodwork comes back. Obviously proper nutrients will be extra critical over these coming weeks. 

Unfortunately, siblings are not able to stay overnight with patients, so Walter and I will get a room in a hotel close to the hospital. Not ideal, but we will be able to be with Aimee most of the day at least. Hopefully it will be a quick stay and we will all be back home together soon.

Aimee had a tough time today, mostly with the positions that they wanted her in for examination. She was pretty miserable with her cold and coughing alot. It was not ideal to have her away from her supports. Thankfully, we have her back in bed at home, but need to do a pre-surgery shower tonight (and tomorrow) and her cecostomy flushes. It is so much to ask of her on top of her cold. Dear, sweet, innocent girl. 

So as not to leave you on a sad, bemoaning note, here are a few cute boys. There is joy, even in the dark days. 

11.26.17 Sickness

Unfortunately, now we are all sick, Aimee included. Baby Walter is 6 days in to his sickness and is having the saddest coughing fits. Thankfully he is eating well. The older boys are on their 11th day, but showing improvement and regaining their appetite. Aimee’s heart rate went up a few days ago and she had been fussy. It wasn’t until yesterday that we knew for sure as she started getting gunky and needing extra cough assist, suctioning, and oxygen. Disappointing after our attempts to keep her healthy. Her body doesn’t need more to deal with right now! 

We will probably cancel one of her hospital trips for this week, but really do need to take her in tomorrow for her check in with the spine surgeon and some bloodwork. The cavity in her back seems to be worse after a week of filling it with fresh packing 2x a day. I’m nervous to try taking her out, since we won’t have oxygen or her bipap, but it feels like what we have to do. At least we’re headed to the right place if we run into trouble!!

11.22.17 Appts

A long day of appointments yesterday. 

The first was with Rehab. We discussed a lot of equipment details, confirmed the type of parts ordered for the chair, discussed how to meet future equipment needs during surgery stays, and talked a lot about pressure spots. The doctor checked over Aimee’s muscle tone and we talked about some strategies to make the foot and elbow braces work without causing skin breakdown. 

The one surprising part of this appt to me was the reintroduction of concern over Aimee’s left hip. She said that the hip was 50% out of socket according to the September x-ray. The surgeon had said that it looked fine at that point.... but maybe he just meant it didn’t need immediate or current attention. The rehab doctor wants it followed, because if that one hip goes out, it will cause major imbalance of pressure through her pelvis. Aimee definitely has been posturing herself in a way that could be adding to the problem. Hopefully this trend does not continue towards a bigger problem down the road. 

The last little tidbit from this appt was a referral to have more appointments at Providence with an OT and a PT following complete recovery from the spine surgery to discuss new recommendations for at home positioning, stretching, and routines.

The second appt for the day was with a nutritionist. This was a detailed look at Aimee’s nutrition status to help ensure she is in the best position for completing healing of her wound. She is having blood tests done to look at specific nutrient levels. She also took measurements and evaluated Aimee’s condition. She recalculated Aimee’s goal and set a couple higher numbers for us to shoot for over this coming week. Aimee hasn’t lost very much weight, but I can tell that some bones are more prominent. She has also lost some patches of hair. The nutritionist is having us bring Aimee back in next week to check back on what healing and food progress she has made. 

Our hope is to get her healed and back to a strong position in preparation for the sick season ahead. Unfortunately, we already have a cough going through our house. The older boys have been sick for several days and little Walter is struggling with it now too. So far Aimee remains healthy and we will do our best to keep her that way. 

Lastly, Walter and I met with the midwife to check up after his first week. He was 6 oz past his birth weight already! A little reminding for me to lay down more to bring my blood pressure and swelling down and to generally not push too much, but overall we are both healthy and recovering. They did caution me to carefully watch Walter’s respiratory status as a cough can quickly wear out a young infant. 

Hoping for health.

11.20.17 Spine Post-Op

Well, it feels like this ride never quite ends. 

We took Aimee in for her Post-Op appt with the Orthopedic surgeon this afternoon. We felt pretty good about how most of the lower incision looked, except for 2 spots near eachother that had still been solidly draining. The surgeon started off by saying that parents usually think the site is worse than it is, but that he could understand why we might be a little gun shy after our previous experience. Then Ed opened up the dressing (which the surgeon was pretty impressed with Ed’s dressing contraption). Basically, the staples were able to be removed (hooray!), but there was one particularly bad area that he hummed and hawed over for several minutes. He decided to probe around the spot and was surprised to find that there is a good size cavity in the facia. It is about a 2.5 inch unhealed pocket under the skin. He determined that we would need to tightly pack the cavity twice a day to wick away the fluids, which should hopefully allow it to heal. Aimee has to go back in next Monday, but he said it will probably be a couple week process. 

Poor Aimee. It was really hard to allow him to probe and prod the wound that way after we have been so carefully tending to it. She was so patient. Honestly, packing open wounds is really, really difficult for me to do, especially on my girl. Ed is bravely taking on the task. It is hard to believe how much wound care is put in our inexperienced hands. 

Positive news, Aimee did have x-rays done and everything looks great inside. It was fascinating to finally see what was done, but hard to believe those giant screws going into her pelvis. It is incredible how much this girl has to endure and how well she handles the challenge. 

Walter and I waited patiently for Ed and Aimee to return from the Radiology department. The 4 of us are heading back in tomorrow for more appts. As the surgeon said, yes, we have to do the wound care, but at least we are home. We are thankful to be in our own beds and to be able to make the decisions here for Aimee’s care. 

11.15.17 Appointments

Ed took Aimee in for 2 planned appointments today. They first met with Aimee’s epileptologist in neurology. Aimee actually had a few noted seizures during the drive and during the appointments. They decided on an increase in one of her seizure meds and possibly an additional increase if we don’t see an improvement over this next week. 

Secondly, they met with the PT and wheelchair vendor to adjust Aimee’s chair post-surgery. Ed had done such a great job adjusting it himself that there wasn’t any urgent changes. They did add some extensions to her foot rests. Longer term, they ordered several new parts, including a new head rest, new back, and new seat... basically they are remodeling her chair. The new seat will have air cells that can be inflated/deflated to compensate for her tilted pelvis, which is starting to cause pressure points and redness while in her chair. The new backrest will be moldable to allow them to compensate for her left shoulder that is pushed back. Overall, some upgrades to better accommodate Aimee’s growing and changing shape. 

Aimee has made major progress this last couple of days in both feeds and wound healing. The silver strips and air time are making a big difference in the lower incision. I feel hopeful looking at it tonight that we may see the whole wound close up over this coming week. There are about 6-7 open spots still, but the rest seems to be filling in well and is looking much less irritated. :) Such a relief! 

Aimee is taking 60-80% of her food and 80-100% of her fluids over 24 hours currently. She is making strides finally. Our hope is to get her up to 100% of the next several days and then slowly move towards 12 hour feeds and 24 hour fluids. I would really like her to not have to eat during the night. 

In the midst of all this positive, Aimee is feeling much better most days. We plan to slowly decrease her pain meds as she shows us she can tolerate it. Today she did amazing and was so happy, even with the long drives. This is the picture Ed sent me during the break between appointments. It is good to see that smile! 

11.13.17 Wound Check Update

Ed is driving Aimee home now. He first took Aimee in for bloodwork, which all looked appropriate given fighting off an infection. The wound care nurse looked over the incision, took photos, and agreed with the course of treatment that Ed had come up with already. Honestly, they are not the most creatively helpful with this process. 

She did restock our supplies and add some additional products to what we had at home, including healing strips with silver to place directly against the incision. There is a lot of irritation and it is not pretty for sure. She said that it is going to be really slow and we definitely need to keep the staples in despite the tears and inflamation, as they are still holding the sides of the wound together. There are some spots that are healing from the outside, but, as we had noticed, there are also some spots that are still open. It will be an ugly scar eventually. She tacked another week of antibiotics onto the end of the course Aimee is already taking, which will mean it will be nearly 1 month total. :( 

Basically from here, we will continue to have Aimee spend as much time as she will tolerate on her sides with the dressings open. We will keep wicking bandaging against the wound the rest of the time covered with a surgical iodine adhesive barrier to prevent contamination. We will keep tracking the progress ourselves to make sure that we see positive progress despite the ugliness. Still our biggest, most important focus is maintaining fluids and working to carefully increase food so that Aimee has the tools to heal. So, we will keep on keeping on this turtle track towards healing. 

11.13.17 Wound Check

We emailed in updated photos of the lower incision last night. This morning an orthopedics nurse called. She agreed that the site looks inflamed and needs to be seen. She asked us to bring Aimee in today for bloodwork and an appointment with a wound care specialist/nurse practitioner. I’m really not ready to travel down there yet sadly, so Ed will have to take her on his own. I’m not sure he is in great shape to make the trip down on his own either, honestly. Praying that he stays alert on the road despite his exhaustion and that there will be a willing nurse to help him transfer Aimee. They don’t usually help. :/ 

In positive news, 2 days ago, Aimee had a really good day and was so happy holding her new brother Walter. He was a little uncertain about being nuzzled so enthusiastically. ❤️ She loves babies. 

11.10.17 Baby Brother

We’ve had an extra focus with the arrival of Aimee’s youngest brother Walter Andrew yesterday. Aimee does love babies and is pleased with the occasional crying. 

Aimee is holding steady. She is more alert and comfortable overall. Probably part of that is because we haven’t pushed her very much with food. Still aren’t always getting to full hydration, but close enough that she is not dehydrated. Her incision is irritated and there is some small spots with seperation. We are having it air out as much as she will tolerate and hoping it will allow her to heal completely and quickly. 

11.8.17 Little Progress

A calmer day today, though Aimee didn’t wake up, except to show discomfort, until late in the day. We backed way off on nutrition and were able to improve hydration. It seems like she is just barely moving food through her system. Doing our best to have her spend as much time as possible on her sides with the dressing open for her incision to dry out. Little early to tell, but we are pleased with how clean we were able to keep the area given the diarrhea situation. 

Thank you for continuing to pray for Aimee’s progress and for us to have wisdom to know how to best care for her. Prayers appreciated also for a healthy, peaceful delivery of baby boy. It is looking like tomorrow will most likely be his birthday. 

11.7.17 Steps Back

I don’t have the energy to give you a detailed update, but Aimee had a bad day. Several major steps backward. Vomiting, clear diarrhea, getting dehydrated, less positive looking incision, lethargic, low temperature, ect. Stopping all food attempts for tonight in an attempt to rehydrate her with as much coconut water as we can get her to handle. Trying not to stress about all the details in one bad day and hope that tomorrow is has positive steps again. Praying for peace in Aimee’s body. 

11.6.17 Update

We found a new strategy for working on feeding and it has been a great success. She hasn’t taken more volume yet, but she is finally not in distress every moment that the pumps are running! We are utilizing the feeding interval option that we have never used before on the feeding pump. It allows us to have her automatically on a 20 minutes on and 20 minutes off schedule. It seems to be enough of a break to eliminate that pain she was feeling. I know I said this yesterday, but I think today she will finally get to full hydration requirements. 😁 She got to 90% of her fluid goal yesterday and 11% of her food goal. Progress is slow, but it is progress!

A lot of drainage still and slightly sadder site. 😢 please continue to pray with us for Aimee’s body to be able to heal this incision. The surgeon said that he wished he would have used staples the first time to give her more healing time, so we are hopeful that they will allow her the time she needs to heal well. 

We were so blessed by the prayers and worship over Aimee last night on Facebook. Thank you to all who joined us. We have definitely seen a renewed peace and alertness in Aimee. It is such a delight to see some of her personality return. 

11.5.17 Update

Aimee is still struggling with liquids, but thankfully only showing very mild dehydration signs. We are hopeful that today may be the day she gets to full fluids, which will be a big relief. She is much more comfortable when we turn off the pumps, so it seems like a lot of her current challenge is related to stomach cramps and reflux and possibly some intestinal distress from the few mls of food we are attempting push. 

She did have a significant amount of drainage yesterday from that lower incision, but the staple closure is holding well and it looks great so far. We are pretty concerned about her being hindered from healing by her lack of nutritional stores and lack of current nutrition. Praying that she will increase her tolerance quickly so that she has the tools her body needs to heal. 

One concerning thing we have started seeing is muscle tremers that she didn’t have before in her legs. Hopefully it is just temporary as her body is healing, but we are keeping our eye on the duration and frequency to be safe. 

11.4.17 Home

We’re home again, which is a big relief on one side with the birth anytime. Aimee is doing okay, about the same as she was yesterday with a tiny increase in fluids. We’re still settling a home med schedule, trying to line up meds for less doses during the night. Making plans for how best to manage her current needs. It is really nice that we were able to come home for the weekend, so that Ed could help me sort out these details rather than heading straight back to work like last time. 

Incision still looks good. She is sleeping on and off, but fitfully. Needing a lot of suctioning, which we are hoping is not a bug she picked up at the hospital. May just be a side effect of her tiredness. 

Here are a few photos from this past week that I could not share while at the hospital. 

Aimee and Daddy the day before the surgery.

Reading with all my kids before leaving for tbe hospital. 


Aimee and I waiting in pre-op.


Lots of sleeping once settled in her room. 

Watching the snow fall as we tried to decide if it was best to stay or go. 

Standing by the pump turning on and off fluids as Aimee could handle them.


Deciding to take her home on our baby due date. 

11.3.17 Infection 7

Well, Aimee hasn’t made any progress, in fact, she lost ground and we are over 360mls short per day on hydration. She is having a harder time tolerating fluids today. :( However, we talked it through with everyone and are going to take her home anyways. Hopefully, once she is home, she will quickly make progress and be at full fluids without needing IV support. :/ Again, it isn’t the ideal and they are definitely trusting our abilities to get her to a good place. We are making the best call we can at this moment. Praying we are making the right decision.

11.3.17 Infection 6

Poor Aimee is grouchy, tired, and uncomfortable, but she has made progress. Drain is out. Dressing is changed. Wound care plan is discussed. The incision looks good and hopefully the staples will make a big difference. It is not going to be simple, straightforward to heal this lower incision, but we’ll do everything we can to help her. Working out how many weeks of antibiotics she will need to continue and getting the med orders worked out. 

We met with the nutritionist and she is calculating some ideas for adding in oils to Aimee’s food and running it over 22 hours instead of 12. We appreciated that she was sensitive to our preference for using real food rather than adding doucal or other similar products. We still haven’t actually started food yet, but only 1 more step to full hydration amounts of pedialyte. 

It would be ideal to give her a bit more time here. Normally we would at least make sure she could tolerate running a reasonable 30% of food, but I think if we can see her tolerate pedialyte/water, we will call that good enough to take her home. Not ideal, but none of it is. Aimee’s poor body is going to take slow, slow steps to recover to her baseline. 

11.2.17 Infection 5

Mostly positive day today. Depending on the night, we hope to have the drain removed tomorrow and the dressing changed out. Aimee made good progress on increasing fluids. Not quite off of IV need yet, but getting closer. We are cautiously hopeful that with a few more positive steps forward, we will be able to bring Aimee home soon. 

We are hoping to meet with a nutritionist while we are here to discuss potential ways to bolster Aimee’s feeding situation. It was a lot for her body to go through 3 surgeries in the past 6 weeks. It is so much more to go through them with such a low amount of nutrition. There have been less than a handful of days with full amounts of food since mid-September. Large majority of them she has received less than half. And a good amount of time has been just pedialyte or water. We want to give her any leg up we can towards healing completely and being strong going into this winter. 

11.2.17 Infection 4

Overall a good night. Aimee was able to take about half her fluids in pedialyte so far and most of her medications. Being followed again by a risk assessment nurse due to the low blood pressures. 

The surgeon will send her home as soon as he can, knowing our situation. Obviously we also want Aimee to be safe, so it will be a balance. She does not seem to be in a lot of pain, so they will just monitor that, the drain, the dressing, and her fluids for now. 

We will attempt to find a way to do an enima or cecostomy flush today as well. Hoping for the right equipment to make that successful and comfortable for Aimee. 

11.1.17 Infection 3

We are back on the surgical floor with Aimee in a squeezy double room. It’s okay though cause Aimee is doing awesome. She is on room air and alert! In fact, she is way more comfortable and alert than she was this morning! Maybe the most we have seen since her last surgery. 

She does have the drain line in and we are working on getting all the meds, equipment, supplies we need on hand. Back to starting with IV fluids and hoping she can tolerate liquids slowly increased through her g-tube. Hopefully we will start that later on tonight. 

All positives so far! Thank you everyone for your continued prayers! We are so grateful and feeling very relieved. 

11.1.17 Infection 2

Great update for you! 

Aimee is out of surgery and everything went really well. She is not yet in recovery, but heading that way soon. The surgeon said the incision was not healing well, but that we caught the contamination early enough that it hadn’t gone deep and the implants are fine! He cleaned it out thoroughly and will leave the drain in for a couple days. He did place staples and an extra protective dressing. She will be slow to heal and we will continue to be careful, but she will only have to be on antibiotics for a couple weeks. We will stay inpatient a couple days and hopefully get her home before baby. 😁

11.1.17 Infection 1

Aimee is back in the operating room and we will update when we meet with the surgeon. It is planned for 2 hours.