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.