DeVoe Family: 2017

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.

12.21.17 Wound VAC32

Aimee’s care conference was this morning. Everyone is working really hard to get Aimee home by Christmas.

Ortho has gotten all of the wrinkles out with insurance and the wound VAC plan. She had another dressing change this morning and we double checked that the home machine is working. They have set up a series of twice weekly appts for us over the next month and hope to be finishing up the wound care by the end of January.

Medical is going to have a GI specialist help us through our remaining concerns. They are saying that Aimee’s upper GI track is abnormal just like her lower already was. Her stomach isn’t emptying appropriatly and her small intestine is slow. This may be the new normal. And we will most likely have to power through a lot of up and downs over these coming months. She may vomit multiple times a day. She may have to have a continuous drain bag on her stomach to vent secretions. She may never be able to use her stomach again. She may always have some level of intolerance. She may always have to be on motility aid medication. Or she may slowly recover some or all the function she had before.

We are bummed. In so many ways. It doesn’t feel okay that her normal would be so distressing. It doesn’t feel comfortable to go home with so many unknowns and so much trial and error left. It feels icky to have her quality of life so damaged and to head home like it is no big deal.

For today we need to get her back to hydration as she is not producing much urine. We need to have a stable day without huge scary desats during vomiting. We need to consult with the GI specialist. If she stays stable, we will try to clamp the stomach drain to see if she can tolerate her secretions again. Then we can remove the PICC line. Once we do that and switch her over to the home wound VAC, we can pack our belongings and bring her home. It may be that we can get to that place by tomorrow, or maybe Saturday.

12.20.17 Wound VAC31

A really stressful evening with Aimee vomiting, turning blue, gasping for air... we don’t know what is going on. After we had just started to feel comfortable with in her new feeding routine. Hoping to get some answers and solutions tomorrow. The night attending didn’t have any answers for us, but did agree to a modified schedule for overnight.

12.20.17 Wound VAC30

Placement of the new G/J tube went really well. Apparently due to her scoliosis, the exit from her stomach to her intestines is in a different location, but because they already had a tube in place, they were able to follow its placement. We are beginning feeds now into the new tube and will see how she does. She had quite a bit of vomiting this morning beforehand.

12.20.27 Wound VAC29

We just got the official decision that they will not take Aimee back into the OR to close her wound. They would have to undercut her skin to be able draw it together. Although it would probably heal faster that way and be a much smaller scar to deal with at future surgeries, they do not think that it is worth the risk of the wound popping back open as it has before. Plus there is the risk of anesthesia and its affects on Aimee.

So, instead it will be at least another month of wound healing and a much wider scar, which may cause some complications with future spine surgeries. We will be taking the wound VAC home and coming down for dressing changes 2 times a week.

We have mixed feelings about this decision. It does mean that we should be able to get Aimee home sooner, but it means a longer healing process and potentially greater risk of infection. We are hopeful that with a good nutrition plan Aimee will heal in that month time frame. However, we also feel nervous since each time we have gone home with a wound... we have ended up back in the OR and back in the hospital. While there has been major progress since we got the wound VAC 3 weeks ago... it is still a large wound on our little girl’s back. I think we would have struggled with either decision.

Aimee is currently in transport to the IR for a G/J tube placement. There will be a care conference for Aimee tomorrow morning at which point we should know what day she will be discharged. We are hopeful that it will be in the next couple days.

12.19.17 Wound VAC28

Still no official plan from Aimee’s team as regards her wound plan, though we have heard a few different rumors.

What we do know at this point is the Aimee is being taken off of TPN tonight, because... she is now up to full nutrition continuously through the NJ! She will still have the central line for a bit longer. Tomorrow late afternoon she will have a small procedure to replace her g-tube with a g/j-tube, which means that we will be able to bipass her stomach and feed her directly into her small intestine at home. This will be a bit more complicated in some ways. We will not be able to replace the button at home like we were able to do with the g-tube, because the j portion has to be threaded into her intestines at the hospital. A much bigger deal if it gets pulled out accidently! She also will not be able to take very much volume at a time, so no bolus feeds (meals), she will instead be fed round the clock. Also, her meds will have to be spread out more instead of just 2 times per day. But! Having the ability to bipass her stomach will allow us to take her home, hopefully really soon. It may also be really helpful for future sicknesses and surgeries.

Side note:Walter has offically spent half his life in the hospital as of today, even though he was born at home and has never been admitted!

12.19.17 Wound VAC27

Aimee had a great day yesterday!

We were able to give her a shower right before her dressing change. The wound is continuing to fill in well. There was some overgrowth of granulation tissue that required silver nitrate to burn it back. No plans have been communicated to us yet, but ortho, plastics, and general medicine were all here and are consulting. We were able to start her feeds and ramp her up throughout the day. She is currently still on TPN, but it has been reduced by half.

At this point we are waiting to hear back from the team on if there will be another trip to the OR for the wound closure or if they will send us home with the wound VAC. Depending on what they decide to do there, we will also have a procedure to replace her g-tube with a g/j-tube.

12.17.17 Wound VAC26

Aimee had a bad night last night full of panics and distress. It is hard to know for sure what is going on and how best to advocate for her. We decided to hold steady on her feeds throughout today. She stopped panicking by the afternoon with some valium, ect, but then had some episodes of vomiting (or attempting to) and discomfort. We decided to give her nausea and pain meds, but to then go forward with starting her on small amounts of food through the NJ tube tonight. Hoping that she will tolerate it without major distress with going slow and giving her plenty of adjustment time between each increase. We are a couple hours in at 5mls of food an hour and so far she has not had been upset.

Ed and I did get to have a break this afternoon for a couple hours. My sweet cousin stayed with Aimee and we got out of the hospital. It was really refreshing to step away for a bit before the next week begins.

12.16.17 Wound VAC25

Not much to report from today. It was calm. Aimee was irritable and slept the whole day after a restless night. Her wound VAC had been alarming about a blockage for a couple hours during the night. We have also had a difficulty with her bipap mask leaking due to the tube into her nose.

She did make it up to full fluid volume of pedialyte through the NJ tube today. She has still been coughing and gagging, but we are hoping that is due to the tube in her throat/keeping her upper gi sphincters from closing. The plan is to replace 5mls of pedialyte with her food in the morning. This is a big big step and we are hoping that she will be able to handle it. She needs to eat!

12.15.17 Wound VAC24

Another great day of progress. Aimee got to leave her room for the first time not for a procedure or test. She went to a Christmas Caroling event. It was nice to have a break from the room. She also had a special visit from some cousins who brought paper snowflakes to decorate her room!

With the progress that Aimee has made, it is very likely that she will be able to start working on trying a bit of food late tomorrow evening or early Sunday. She hasn’t tolerated any food since November 28th, so this would be a huge step if she can begin to do it now through this NJ tube.

(12.14.17 Wound VAC23

Really encouraging day today. Aimee was awake, comfortable, even happy. She did not fight to get the tube out nearly as much today. She made significant progress on taking fluids through her NJ tube. She was increased to 35mls an hour this evening, halfway to her hydration goal. Once she reaches that goal, we will be able to attempt food. We are praying that this process continues to go smoothly forward over this next week.

The wound viewing went well this morning. The medical team, the orthopedics team, and the surgeon all wanted to see. The wound is really starting to fill in with good granulation tissue. There is a small area that needs to be burned back a bit with silver nitrate during the next dressing change Monday, but otherwise, it is looking remarkably better. The plastic surgeon and the ortho surgeon will both be there (on the lunch break between surgeries!) to make a decision about either continuing with the wound VAC or closing it in the OR.

We also got to meet with the GI team again and ask lots of questions about the differences between using a g and a j tube regarding volume, digestion, and meds. It was helpful to also hear a bit of the process of placing this tube, assuming that is where we are headed.

12.14.17 Wound VAC22

Aimee had the nasal tube extended yesterday afternoon to make it an NJ tube. All went well and she is increasing by 5mls every 6 hours, currently at 15mls an hour. We have switched her meds over to the j tube for now too. She is gagging and coughing on the tube since it runs down her throat and we are nervous that she will lose her meds if they’re put in her stomach. The only distress she has shown so far with using the new tube is when we gave her several meds last night for the first time and the irritation from the tube itself.

Next up on the agenda is a big wound VAC change this morning at 10:30. Her surgeon, the ortho team, and the medical team are all planning to be here to look at the current wound status. The surgeon is hoping to make a decision about closing the wound based off of the progress it has made over this past 16 days since the last clean out/wound VAC placement. Potentially we will have the plastic surgeon who assisted with that procedure attend the dressing change on Monday to help decide the best course of action.

Overall Aimee had a calm night with only a couple disturbances. Her and I did get sprayed with a syringe of blood this morning at 4:30 with her TPN levels blood draw. Her weighted blanket took the bulk of the blow sadly. Hopefully that will wash out okay since she does not sleep well without it.

12.13.17 Wound VAC21

Corrections.

I gave an update based off of what I knew when I left the hospital to spend the night with the boys at a hotel. After we left the official word came that the 2nd x-ray showed that the extra 10cm of tube still wasn’t enough. They did a 3rd attempt adding 4 more cm. Aimee ended up vomiting up her seizure meds and needing extra doses. By this time it was midnight and the team wanted to then start her on that 5mls an hour overnight. Ed refused and thankfully they respected that.

After a calmer night with some panicky episodes, the feed was started. Then the resident came in to tell us that they still weren’t happy with the placement of the tube. Feeds were stopped again. They are going to take her down to the IR(Interventional Radiology) in a couple hours and just put the tube all the way into the jejunal portion of the intestines. So instead of an ND it will be an NJ. This cannot be done at bedside, because it requires a fluoroscopy (like a video x-ray). We are trying to ensure that she gets at least valium beforehand. Ed and her nurse will be able to go with her to comfort her and due to her desat/turning blue with the tube insertion yesterday.

12.12.17 Wound VAC20

Tough couple days for Aimee. She was distressed most of yesterday, except when her pedialyte was stopped for a 3 hour period. We restarted her pedialyte and through last night she was awake every hour moaning, flailing her arms, and uncomfortable. This morning we turned it off again and she calmed down and became happy. She just isn’t happy or comfortable when it is running. Her stomach isn’t responding as it should even with the medication, though it did help to a point.

So this afternoon the nurses placed an ND tube through her nose down past the stomach into the duodenum. First try went to her lungs and she turned pretty blue. :( Second try went into her stomach. She was naturally very upset. She had to spend an hour on her right side while the weighted tube worked its way through the exit of her stomach. She doesn’t breath well on that side and ended up choking and then vomiting. X-ray came and noted that the tube was not in far enough. After a second placement attempt and another x-ray to confirm, the tube is in enough. She will start a slow 5mls of pedialyte through the ND tube overnight.

Overall such a difficult afternoon and evening. She ended up getting a bloody nose during her cecostomy flush, having a quite high heart rate, and needing more valium.

Praying that this process works and does not cause her the same or more discomfort.

12.11.17 Wound VAC19

Had a wound VAC dressing change this morning. Aimee has been super agitated since about 4am, so we gave her valium ahead of time. This helped, but she still required a lot of comforting and pressure to make it through.

The wound itself is doing really well. It has definitely begun to fill in and the flesh is a good red/pink color. It still measures 10cm long, but is only 3 cm wide and 2 cm deep now.

We have pushed her ahead to 30mls an hour of pedialyte, but she isn’t doing really well with it at the moment. We talked with the team this morning about the next steps. We want to give her a chance to take her feeds, but if she just isn’t making progress despite these motolity meds, we needed to consider the other options. We don’t want to have the central/PICC line in any longer than we have to have it because of the added risks. One possibility is trying out giving nutrition past her stomach into the beginning of her small intestine. If she does better with that we could look at getting her a j-tube. I’ll add more details about that later if we go that route, because we are still hopeful that she may continue to make progress through her g-tube into her stomach.

12.10.17 Wound VAC18

Fairly quiet day yesterday. Aimee is tolerating slow increases in pedialyte and is now up to 20mls an hour. She did have a dressing change done on her PICC line, but otherwise only the routine care.

One positive is that Ed and I were able to write a list of requested day and night nurses for the charge nurse. We won’t always get these nurses of course, but with how much we have been here lately and the complexity of Aimee, they will do there best to give us repeats. It has been already less stressful with this in place for a few days.

Thankfully we will have one of our requested nurses today when we leave Aimee here at the hospital for the first time. Angelique, Aimee’s cousin who also spent time as her caregiver, will be here too. We are heading home for several hours to have a 6th birthday party for our favorite Caleb. It is going to be a group effort with everyone bringing different elements of the party. How thankful we are to have such loving family and friends to help us throw a party in the midst of this. It is super important to Caleb and thus to us. I really wish Aimee was coming home with us. It will be so hard to walk out the door and leave her here.

On a funny note, the other night one of the residents on Aimee’s team came running into the room out of breath because he had seen in the computer that we were discharged. The hospital is nearly at max capacity right now and, with the chaos, some errors are being made. It was mostly comical in this case, because he had just been in the room less than an hour before while Aimee was having her cecostomy flush done. He thought we had run out the door after that I guess. 😆 Aimee’s meds were canceled from the pharmacy that night too, so someone must have mistakenly marked the wrong room number as discharged.

12.8.17 Wound VAC17

Calm day, Aimee slept a lot. We were able to get her to tolerate 5 mls an hour of pedialyte for a couple hours and then upped her to 10mls an hour. She is showing distress and hiccuping, but has kept it down for the last few hours. Hoping for a calm night with more progress tomorrow.

12.7.17 Wound VAC16

Long day with lots of challenging moments, especially for Aimee.

Energy wise she has really perked up. The PICC line nutrition is making a huge difference. She is smiling and energetic.

However, she did have to make it through 30 mls of contrast for the GI test today. It went okay. We gave her IV anti-nausea meds an hour ahead. They took her down and brought her back an hour later, because the contrast hadn’t moved at all by that time. They had a mobile x-ray come by every half an hour and by 2.5 hours it had started to move out of her stomach. They kept tracking it and found that there was no obstruction or issue in her small intestines. We had thought this was not the problem, but wanted to make sure. It seems that the issue is the stomach itself not working properly. GI decided to start her on a small dose of motility meds tonight. Tomorrow we will test this small dose by giving her a tiny bit of pedialyte.

She did spend a couple hours this afternoon vomiting up the rest of the contrast that was in her stomach. We did get her more anti-nausea meds, but right at that point her wound vac got a blockage. They came in and attempted to just change the tubing, but it was unsuccessful. They had to do a whole dressing change, which was definitely painful for Aimee.

Her amazing nurse, whom we have had several times now, washed Aimee’s hair. Very much needed, though another stresser for Aimee. And now she is doing her hour long cecostomy flush.

Poor girl is worn out! Hoping for a good rest for her tonight before the big challenge of attempting some fluids into her stomach.

12.6.17 Wound VAC15

A fairly calm day for Aimee. She slept most of the time and just woke up this evening quite emotional. We had an upper GI scheduled, but there was some miscommunication between the new team and the radiologist. They had not communicated that Aimee does not eat by mouth, so it is essentially a middle GI study that we need. It may take hours depending on how impaired her motility is currently. She is again scheduled for the study, but now tomorrow.

We had our first rounds with the medical team this morning. It will be somewhat challenging the next few days as we re-establish relationship. At this point they don’t look to us as the experts or value our input very highly. We’ll get there. Thankfully for now we get to stay on the surgical floor with the nurses that we have come to know and begun to trust.

Aimee has been worked up to full calories through the central line IV. There is quite a routine around this line due to the increased risks. Daily she is weighed, cleaned with surgical wipes, and bed is changed to reduce infection risks. Currently she is on nightly blood draws to allow them to tweak the TPN according to her nutrient levels. It is fascinating to learn about a new process and wonderful to be getting her calories, but also a bit intimidating and not a very long term solution.

12.5.17 Wound VAC14

Aimee had another night of intense desats and another pain crisis into late last night. Her lungs are sounding great, chest x-ray is clear. She is no longer in isolation. Possibly it is just her central apnea acting up because of all the stress on her body currently.

Another wound VAC dressing was done this morning. The surrounding skin is getting irriatated, but the dressing change went well. No noticable change in the wound. Still huge.

She is being transferred over from surgical care to medical care due to the current complexity. The ortho team will still manage her wound of course, but medical will be overseeing her nutrition, respiratory status, ect. Once we are transferred to medical then a new plan will be made. The GI team still wants an upper GI study done today, but it has to be approved by her new attending first.

Aimee is pretty pale and exhausted so far today, but she is also peaceful and resting.

12.4.17 Wound VAC13

Aimee is stable and back with us. The procedure took longer than expected due to her vein seizing during the process. The catheter is now in place in the upper artery running from her right bicep area to just outside her heart. They have already started nutrition called TPN through the new line. They also placed a new peripheral IV for giving meds in a new spot.

There are a few plans in place. Step one will be doing a contrast study on her upper GI track. This should be done in the AM. More med plans for tomorrow, but they first want to ensure that no mechanical changes were caused by her change in shape from the spine surgery. For tonight, they want another enima done. They also added a bigger reflux med given through the IV, as well as, anti-nausea meds.

On a positive note, we had a special visit from our big boys, Caleb and Elliot. It was heartbreaking and wonderful to be with them. Caleb is turning 6 in just a week. We are praying that Aimee will make it home in time, though at this point, it appears unlikely.

12.4.17 Wound VAC12

The team has decided to place a central/PICC line under anesthesia in order to do IV nutrition/TPN. They were thinking of starting with a simplified version through the regular IV while we waited for the schedule to have room for her to go under, but now her IV has gone bad again. So, she was bumped up the list and should be going down around 3pm. We had just convinced them to switch all possible meds over to IV versions... but now we can’t use them! Thankfully she is becoming more comfortable the longer we go without putting anything in her stomach, so at least she isn’t in pain without a way to give her any meds for it. Hoping that she stays this way despite the lapse in her pain medication schedule.

12.4.17 Wound VAC11

Aimee had some intense desats down into the 50s last night that she slowly came out of on her own. Freaked out the nurses. Respiratory therapy came, her sats looked good, but decreased lower lung sounds. They tried some deep suctioning, which was unproductive. They’re wondering if maybe she has some mucus plugs in her lungs that need more than cough assist to clear.

12.3.17 Wound VAC10

Aimee had a really tough day and evening. Lots of gagging, choking, crying, vomiting, desating. She is calming down now after we were able to get her some IV pain medications and her nightly sedative. We had to push back her pain meds in the evening, because they were originally by g-tube and she is having difficulty taking in even her important meds.

No progress forward today. If anything we feel farther back. Hoping that with the start of the work week tomorrow and the return of the primary doctors, we will get some real answers to what is happening with Aimee’s gut.

12.3.17 Wound VAC9

Negative results from all the stool samples, so that is ruled out. X-ray showed a giant air bubble in her small intestine, which could contribute to slowing motility down. We met with some GI doctors this afternoon, unfortunately not her doctors that already know her. They want us to add an extra enima today and tomorrow in addition to her c-tube flush to see if we can move that bubble out. They are also going to check her pancreas and gallbladder for swelling and other issues to see if that is the problem. Aimee is no longer even tolerating the 10mls an hour of pediatlyte. She has had 3 episodes of reflux so far today causing vomiting/emptying her stomach. Some meds lost that way, but no critical ones. Her stomach is somewhat bloated, but has good sounds. Poor girl is pretty tired at this point.

12.2.17 Wound VAC8

Doctors ordered an abdominal x-ray, which was done in Aimee’s room earlier this evening. They are looking for any potential issues that may be causing her challenges with taking fluids/food lately. They also took a stool sample to do test for viruses. For now they have decided to attempt to run her on 10mls of pedialyte an hour through the night and re-evaluate in the morning.

12.2.17 Wound VAC7

And some steps back. Yesterday the attending asked us to attempt food before going to IV nutrition. Aimee had a tough time with a tiny attempt. We backed off, but it set her back on her tolerance of liquids. Today they wanted to do a wound VAC sponge change and move her to the new machine. The machine is not functioning correctly, so we had to stick with the inpatient one. They gave her some meds to help with the sponge/dressing change, but those caused her to be nauseous and vomit since she hasn’t had any food. We tried to get her some nausea meds through the IV, but her IV was going bad. Waited for the IV team. Managed to find a still good vein after a bit of prodding and poking. Got the new IV. Got the anti-nausea meds. Finally got the sponge for the wound changed. It was pretty horrible to see. So wide and so deep.

Such a draining, exhausting day.

We will attempt to get her back on some g-tube fluids again tonight after her c-tube flush and see how that goes. Hopefully by tomorrow afternoon we will back to where we were yesterday afternoon.

One fun part of this stay is that little Walter is a celebrity around here. So many of the nurses worked with us in the weeks leading up to his arrival. They are all so excited to stop by our window to see him or even gown up to come in our room, meet him, and learn his name.

12.1.17 Wound VAC6

Some positive steps forward. We did get the new wound VAC machine delivered that will be for home use. The plan is for tomorrow to change over to that machine along with a dressing change. They will most likely give her some valium and maybe morphine to help her through that initial change.

We are working up on her fluids through her g-tube and have made it halfway to that goal. No food yet. The dietician/nutrition team is consulting with her attending about doing IV nutrition until we can get her up on full feeds. They would like to keep her inpatient until she reaches that point this time. We obviously wouldn’t aim for her normal feeding routine, but would aim to have her get nutrition with continuous feeds like we were just before this surgery.

The nutrient bloodwork did show low levels of vitamin c, zinc, and iron. They will plan to have her supplemented with those as well.

Respiratory wise, Aimee’s lungs are more clear. She is still requiring extra oxygen support and we have not yet used our home bipap machine or settings. She is in a place where we would feel comfortable caring for her at home since we have all of the necessary machines already, but we do have to make sure she is safe to travel to home as well.

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.

10.31.17 Surgery details

Aimee is checking in tomorrow at 12:45pm and scheduled for a 2:15pm procedure. We would not be surprised if this timeframe does get pushed back some as it is later in the day and the surgeon is adding her into his schedule. The plan is for a 2 hour surgery to clean out the infected incision and determine the appropriate course of action.

For some reason, we had assumed that it would be an outpatient procedure, though it was never mentioned yesterday. Really not much was discussed except what needed to be done. No details. The nurse that called this morning said that the surgeon planned on 4 days inpatient for her. We’re not sure if this is just in case he finds a deeper infection or if it is no matter what. Definitely nerve wracking to not know if we will be there as our due date rapidly approaches. We’re pretty numb and nauseous right now, but also really thankful that we took her in yesterday.

Thank you for praying for Aimee with us.

10.30.17 Incision Infection

This afternoon we brought Aimee into Children’s to have her surgeon look at the lower incision. A long day for Aimee to be in her chair after her late night. Sadly, the surgeon decided that Aimee needs to go back into surgery. There is an infection and he needs to determine if it is just in the upper tissue or if is down at the implant. He put her on big antibiotics until he can get her in on Wednesday. Once the incision is cleaned out, he will reclose the wound with staples, and decide what course of antibiotics she needs afterwards. If it is at the implant she will have to be on them for 3 months! Hopefully it is not that deep.

We’re waiting for a scheduling call at this point, but she will go back under at some point on Wednesday.

10.30.17 Update

After another big round of meds during the night, Aimee finally fitfully fell asleep for several hours. This morning I was able to give her another round with her dressing change and she has fallen back asleep thankfully. The more she sleeps and the more calm she stays, the less she moves and hopefully the better shape the incision will be in for healing. Haven’t yet heard back from her surgeon regarding the updated photos.

Positive news though, she does seem to be tolerating the increase in food (at least we hope that wasn’t a contributing pain factor). Yesterday she took in 50% of her food goal and we are hoping to repeat that success today.

10.29.17

Another rough night for Aimee. We’ve given her all the med options we have and she still isn’t calming down. 😢

Along with the drainage from her lower incision, there are now a few spots that are opening up. We messaged new pictures to the surgeon tonight along with a request for more dressing. We only have 1 left of the excess supply we requested at discharge.

10.29.17 Steps

Yesterday, Aimee woke up calm and alert. It was a beautiful Fall day out and Ed was home, so we decided to attempt a short walk. It was a perfect little 20 minute normal.

We thought maybe she could handle more and took her out for another short period to the garden. That was apparently too much and she was in pain the rest of the day. :( Still, it was good steps in right direction towards a bit of normal activity.

Today, she is completely worn out from those steps, but we’re going to attempt a slight increase in calories. We have still kept her hydrated, but she has not yet made any progress with food since we got home. Today, while she sleeps, we will hopefully bump up her food amount just a bit. Our next goal for these coming few days is to get her from 30% up to 50% of her typical minimum food volume.

10.26.17 Drainage update

Still a lot of drainage from the lower incision, but we were able to email photos to her surgeon and get confirmation that the incison is still okay. We are just doing our best to keep it clean and dry. Sadly for Aimee, it means a lot of dressing changes.

She had a tough day today overall. Probably just exhaustion, but it is always a little nerve wracking to see her like this. Hoping it is just finally getting deeper sleep at home. She has needed oxygen/bipap most of the day, been pale, needed to be cathed, needed extra suctioning, and a lot of breaks from fluids. We’re still maintaining hydration though and holding steady at about 30% of calories. The good news is that she is sleeping soundly now and we have no meds to administer for 3 hours, so off to bed. :)

10.26.17 Pictures

Pictures from Aimee’s 9 days at Seattle Children’s:

Before and after of Aimee’s spine. We will get a better comparison after she is more healed, but this gives a good idea of the change. Her surgeon was disappointed to not have better results and to find her case more difficult than anticipated. There was definitely some discouraging news from the surgery itself, but we are excited to see Aimee have this progress.