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.

One of the hardest parts is bringing her in when we know the pain she will have to endure. 

Carrying her through the chaos. 


Holding my flexible girl for the last time. 


Finally making it into Aimee’s ICU room. 


First glimpses of her eyes during her blood transfusion.

Leaving the ICU. 


Transport through the hospital was dramatic, but only because Ed and I got trapped by in an employee only elevator. :) 


Our stuffed shared room.


Beat up and exhuasted. Her body had cuts, bruises, blisters, sores, and lots of swelling all over. 


Documenting baby boy at 38 weeks +1 at Aimee’s bedside.


Creatively using the limited available hospital equipment options. 


View from the bench where we slept. 


Making the big wheelchair adjustments.

Working on sitting up again. 


A little uncertain about being out of bed. 


Packing her up to make an escape. 


Thankful to be bringing her home. 

10.25.17

The most drainage and bleeding we have seen yet from Aimee’s incision tonight. Hoping that it is just the strain of the ride home, ect. 

10.25.17 Spine Surgery 24

It’s a good day.

Seems like everyone wanted to get their say in Aimee’s discharge, but finally officially done with critical care and on to the long recovery road. 

10.24.17 Spine Surgery 23

Well, this has been a frustrating day at the hospital. It took all day long to get the stool sample between hospital regulations, transfering shifts between different doctors who each didn’t agree with previous doctors, disagreement about allowing enimas, a by-the-book nurse, ect, ect. Really challenging. The surgeon told us to not do any bowel interventions today... argh. I really should have asked our GI doctor to get involved. We are pretty taxed and just want to get out of here at this point so that we can take care of Aimee better at home. 

Anyways, bottom line is that the stool sample was negative and we were able to keep Aimee hydrated through the day without IV interventions. She is not tolerating her feeds very well, but doing okay with plain fluids. We are pretty confident that Aimee will be cleared to be discharged tomorrow. Hoping hoping hoping to get out of here! 

A few positive notes to end this little post:

-Aimee is taller and amazingly straighter. I can’t wait to share pictures, though I won’t have any x-rays to show yet.

-Aimee is moving her left hand more than we have seen her move it in years! Not sure, but it seems like she may have had a nerve pinched or something on that side. 

-Our nurse for tonight is laid back, empathetic, and friendly. 

-One of the 3 Starbucks in the hospital is 24 hours, so since we made it through this day and we didn’t yell at anyone, Ed is going to get us some caramel apple spices. :) We will end this day on a thankful note, even if it takes a special treat to do it. 

10.24.17 Spine Surgery 22

As we wait for the stool sample situation, the room had to be put on isolation as a precaution. The surgeon came by to chat with us and discuss a plan. They don’t think it is c-diff, but want to make sure. At this point, he doesn’t feel comfortable with Aimee leaving anyways because of the hydration issue. So, here is hoping that the diarrhea stops, we get a clear sample, and she stays hydrated enough today that we can bring her home soon. If all goes well, maybe tomorrow hopefully. 

We keep getting stories of all the moms and nurses who have gone into labor here recently. I think I am making them nervous being here so close to the due date. :) only 10 days left! Wow. 

10.24.17 Spine Surgery 21

The night nurse pratictioner did over a bag of fluids through the IV last night to keep Aimee hydrated. Thankfully he was willing to run it continously throughout the night to preserve the IV itself. That went great. 

This morning in talking with the resident and surgeon, we have decided to run a stool sample to check for c-diff, just to be safe. Our only remaining concerns that keep us from caring for Aimee at home are the cause of the diarrhea and the difficulty staying hydrated. 

10.23.17 Spine Surgery 20

Pretty good day. We made it to our goal that I mentioned earlier with continuous fluids. Aimee also did amazing on her wheelchair test. However, we have not done well on the hydration goal. Again we are negative 7-800mls due to this diarrhea that Aimee has had the last couple days. :( We aren’t sure what to do honestly. Do we stay and ask for some tests to be done or do we assume it is just a GI bug she picked up here that will go away on its own? Will we be able to keep her hydrated on our own if it continues? 

Ed and I are starting to feel a bit like we’ve been here too much lately. :) between these past 2 stays we have only had 3 nurses that had more than 1 shift (they each had 2). We have been moved to new nurses mid shift several times. So, we are getting to know an alarming percentage of staff. Usually when we stay during sickness, I might see 1-2 people I’ve met before. This time, they’re everywhere. :) The respiratory therapists, the nurses, the IV teams, the surgeons, ect, ect. Similar to how I feel on the outpatient side with all time we spent in clinic. This place is too familiar. We shouldn’t know it so well. Let’s try to get out of here!

10.23.17 Spine Surgery 19

We were able to carefully get a fluid bolus into Aimee’s IV last night. Early this morning the nurse practitioner ordered another even bigger bolus, but it would have required placing a new IV. She was worried about Aimee’s low blood pressures and lack of urine. Those low nighttime pressures cause a lot of drama when we’re here. They are low enough that somtimes the nurses can’t even record them in the system. 

Anyways, we were able to convince her to hold off on that bolus so we didn’t have to wake Aimee up at 4:30 to put in an IV, which is such an ordeal to get placed. 

This morning we met with the surgery team again and mapped out a plan to get Aimee home. If all goes well today, we are hoping to be discharged tomorrow. Our goal is to have her on continuous 24 hours a day water and 40% of her normal food volume run over 12 hours a day. We hope to get her to tolerate rates high enough for that and to ensure that she stays in a stable place with hydration throughout today/tonight. We will also do a pain/vitals test in her wheelchair today for 1.5 hours to make sure that she can tolerate the drive home safely. Obviously these things aren’t nearly Aimee’s baseline, but Ed and I feel that it would be safe to release her from the hospital if those goals are met. Thankfully the surgeon is trusting us from there. 

10.22.17 Spine Surgery 18

Aimee’s IV is starting to go bad. It feels like we have gone through so many during this stay. She needs a bolus of fluids tonight to help her get caught up, so we’re hoping it lasts! She is tricky to get an IV in or to draw  blood from, so we hate to lose another access. 

We are successfully getting a teeny bit of food into her and plan to run it throughout the night at just 20mls/hr. If this goes well, maybe in the morning we can make an increase to a larger amount. Normally, Aimee gets boluses at 225mls/hr of food aside from her other fluids, so we have a lot of work to do to get her back on track. However, just like with her last surgery, if we can get her to take a reasonable percentage of food even continuously fed through the day, we will be able to work on this progress from home. It took us about 3 weeks to get her taking full calories last time and we are not going to hang around here for that long! :) 

Pain management is also a huge area that we have to be sure we have the right plan for at home. Aimee has big incisions from neck to mid back and from mid back to pelvis. She has 12 screws, including some 3” long into her pelvis, aside from the 2 rod implants and other pieces. And her muscles are fighting to put her body back in the position that they know as normal. She is going to have a long recovery for sure from this huge surgery. Just getting her to sit in her wheelchair for the ride home is going to be a big hurdle.

Lastly, we need to settle the output of fluids while making sure to also keep an appropriate amount moving out. We don’t want to make her endure the drive home, only to have to bring her back for fluids!

Tomorrow we will meet again with the surgery team and hope to have a clearer view of what happens next. 

10.22.17 Spine Surgery 17

We just got the calculation from Aimee's nurse and she is negative 800mls on her fluids for today. :( 

10.22.17 Spine Surgery 16

After an uncomfortable night and early morning, Aimee flipped a switch and has been having a positive day. We had multiple discussions with the team overseeing her care and were able to increase the muscle relaxer doses, get more options for pain mediciation, and switch to an extended version of the anti-inflammatory. This seems to have made a huge difference. Just a couple of hours ago Aimee was heading back in the wrong direction and it was nearly time for her diazapam muscle relaxer. She is now sleeping comforably on bipap with a lower heartrate and deeper, slower breathing. 

Also, she made huge progress today in her fluids. She is tolerating a continuous dose by g-tube that would cover her hydration needs. Unfortunately, she has also had difficulty with too many fluids out, so we haven't been able to reduce her IV rates yet. Tonight we hope to add just a tiny amount of food to see how she handles it. Steps towards home!

10.21.17 Spine Surgery 15

Aimee has had such a rough day. We don't know for sure what is going on, but maybe her nerves are finally waking up and sending pain signals. She is having more muscle spasms, very aggitated, grinding teeth, jerky movements, breathing quickly, and her heart rate is high. Messing with the meds tonight and trying to get her settled. It is always so difficult to trouble shoot what is happening with her and then convince the medical staff of what we think is needed based on her clues. Praying that we find a solution to bring peace to her body. 

10.21.17 Spine Surgery 14

Rough morning. Aimee woke up in tears and we had to fend off all the visitors hoping to change the wound dressing, administer catheters, do physical therapy, ect. 

Still no fluid progress yet. She is having a hard time with just her meds and half the daily requirement of liquids. 

Goal for today is to get her up in a commode with the hoyer lift for her c-tube flush. This is pretty ambitious as it takes over an hour. However, even though she hasn't had any food yet, she still needs a clean out. Hoping that with success in this area, we will be able to make some progress towards increased fluids into her stomach. 

10.20.17 Spine Surgery 13

Hey, Aimee finally got a bigger space. In fact, she got a giant room! We were able to bring in her wheelchair and using the lift we moved her over to start some adjustments. The PT that was helping us actually thought someone had run into her chair, because the headrest was so off center. No, she was really that crooked! Looking forward to seeing her sitting up tall soon. For now, we had to cut short the adjustment session cause Aimee was starting to cry with the pain.

Goal for the moment is still increasing fluid tolerance. Eventually we would like to get some calories in her! For now we are waiting for an ICU nurse to come put in a new IV as her remaining one was in bad shape and had to be removed. 

Second goal is working towards getting her to the point of being able to tolerate sitting in a toilet chair for enimas/flushes. 

10.20.17 Spine Surgery 12

Aimee had a good night overall. Her heart rate has started to come down. We are having a really difficult time increasing g-tube fluids, so no progress away from IV yet. We were able to get her out of bed and into a hoyer lift this morning, which she didn't appreciate, but did tolerate. The PT was upset that Aimee is still in this little space as she felt that it is compromising her care. With additional pressure from her and the nurse and the surgical team, we have finally been told that Aimee has a new space being prepared. We are hopeful that later on today we will be able to bring her wheelchair into the new room, modify it somewhat for her new form, and maybe even get her to sit in it for a short time tonight. Finally!!

10.19.17 Spine Surgery 11

No move to a more appropriate room yet, but we also haven't made much progress with moving fluids to g-tube, so we haven't needed extra equipment. Unfortunately, we lost one of Aimee's IVs and the one we have left is pretty puffy. Hoping we don't lose that one, since they used up almost all the good spots already with previous attempts/other IVs. At this point we have moved her meds off of the IV to g-tube successfully, but still need it for most of her fluids. 

One more success is that Aimee did finally urinate on her own, which is good neurological news. Many more steps to go!

10.19.17 Spine Surgery 10

Good news for us. When the ortho surgery team came by they were not pleased with the space here. It was kind of a relief to know that it is really ridiculous for Aimee with all her machines to be here. It wasn't just us who felt it was unacceptable. Aimee will get moved to a larger room as soon as there is one available. 

We are slowly working to increase the pedialyte and slowly weaning off of IV fluids. There was a huge amount of drainage from the upper portion of her back last night. Her bed was soaked with it this morning. At this point they don't plan to change out her dressings until tomorrow. We did get the foley catheter out and hope that Aimee will urinate on her own today. 

10.19.17 Spine Surgery 9

Thankfully we were able to get a risk nurse from the ICU to coordinate some of Aimee's care last night. Once we added some valium and increased her bipap oxygen, Aimee had a stable night. We are hopeful as today's nurse seems aware and willing to follow our lead. 

We don't have an official plan at this point, but the main hopes for today are to move her from foley catheter to intermittent cath/diapering, to add some PT services to get her tolerating sitting up and being tranferred, to move her from IV fluids to continuous pedialyte through her g-tube, and to move her from IV medications to g-tube medications. 

10.18.17 Spine Surgery 8

After a pretty good day and some breaks off of bipap, we were released at 10pm tonight from the ICU to the surgical floor. It is already a nightmare. Aimee is needing more oxygen and is having muscle spasms. She is breathing really quick and shallow. They seem unprepared to deal with her here already in the first 30 minutes. We have a shared room in which we are not allowed to use the bathroom or the shower. We have to go down the hall to get to a community bathroom. Apparently we will have to go to a different floor altogether to get to a shower. (Really wish I had taken one up in the ICU). We are the outside bed, so there is barely enough room for all of Aimee's equipment, let alone room for us to sleep. And we were told by the surgical fellow that Aimee would be fine to transfer since they have "5 of the same patient" already. Oooh I'm ticked. They have no idea how to care for Aimee on this floor and to pretend that all 5 patients that had spine surgeries done are the same person...makes my blood boil. This is going to be a LONG hospital stay! 

10.18.17 Spine Surgery 7

Just finished the blood transfusion and it has made a big difference. Aimee perked up and was alert and moving. She did need some more morphine due to the movement, but she is doing well respiratory wise. She had also been retaining a lot of fluids and this is finally starting to drain too. Great progress! 

10.18.17 Spine Surgery 6

Finally had rounds and got a good long talk in with the surgeon. Aimee is going to have a blood tranfusion this morning as her hematocrit was at the threshold of 20. At this point she is not very alert, but we have started to see some brief eye flutterings. Hopeful the blood will help to perk her up. 

Once she has received blood, the plan is to very slowly start her on pedialyte through her g-tube at 10mls/hr. Knowing that her nerves have been stretched as a part of surgery, it will take time for everything to communicate properly again. She will remain in the ICU for now and we will slowly move from continuous morphine to as needed morphine plus oxi, tylenol, and ibuprofen. 

We hope to start seeing her more alert soon. 

10.18.17 Spine Surgery 5

Was planning to update after rounds, but they haven't happened yet still. So, no plan to communicate to you, but Aimee is stable. We haven't seen her awaken at all and she isn't responding to much. Not even a startle for blood draws or turning her over. She did have some extra boluses of morphine last night and a few other meds were added too. She was pretty dehydrated and heart rate was higher, so extra fluid boluses were added. 

Currently she is pretty pale and her blood count is (not surprisingly) low. The surgeon did say he didn't think she lost much blood, but he is always very optimistic. There is still a possibility of a tranfusion being needed. 

10.17.17 Spine Surgery 4

We are finally with Aimee in the ICU. It is so good to finally see her. She has been extubated to a vent with oxygen, which is on the same settings as her home bipap currently. She has sad sores, particularly from the arterial line in her wrist. They pulled the line and put on a pressure bandage to cover the artery, but the bruising is so horrible. She also has skin breakdown in other areas from laying on her front for so long. 

She is startling a lot. She isn't awake at all, just very agitated. Must be in a lot of pain, though she is on continuous morphine. There will be checks on her at least every hour and we will monitor pain and breathing throughout the night. At this point, we are just so happy to be with her. 

10.17.17 Spine Surgery 3

We just met with Aimee's surgeon. Aimee has not yet been extubated, but she is stable and will be tranfered to ICU over the next few hours. Once she is settled in the ICU, we will be able to be with her again. 

The surgery didn't go as smoothly as hoped and Aimee had to be kept under for a couple extra hours longer than anticipated. Her curve was really stiff, bones were too soft, and her pelvis was very tilted. Basically, when the tension from the stiff curve was put on the upper screws into her neck, the screws came out. Also, it was very difficult to get the lower portion of the rods into the base, because of the pelvic tilt. The surgeon ended up doing a workaround of putting a band around the back side of the upper spine to hold the screws. He was actually pretty excited about it and plans to always do that for his future cases. 

Another challenge is that the neuromontitoring was not successful with Aimee. Her nervous system wasn't communicating in a monitorable way. Although there is no reason at this point to expect nerve damage, they were not able to be certain. We know that Aimee's nerves don't communicate well, but this was disappointing and saddening to hear. 

The hope is that these rods will last for 4 cm of spine growth, which should be about 2.5 years. He hopes that the next 2 adjustments will only be done on the left side to attempt to straighten out the curve. They will be adjusted by ultrasound and magnets every 4 months if the curve is flexible enough that he can drive the left side straighter. If it is not, he will just adjust for growth every 6 months or so. Once it is time to replace these rods, it should be a slightly simpler procedure as he placed a fixed extension at the base of the spine to make it easier to place new rods. 

10.17.17 Spine Surgery 2

We just got an update that the surgery team has finished the first implant and is starting to work on the second rod right now. 

10.17.17 Spine Surgery 1

We got started early this morning, beat the traffic down to Seattle, and got going on the pre-surgery to do. 

So far all is going okay. I went back with Aimee, though they were a little hesitant with how full the room would be. There was already a dozen people in the operating room we came in and the surgeons were not yet in there. We asked that one of the IVs be placed ahead with ultrasound, since that went so well with the last surgery. It didn't go quite as smoothly this time. Aimee ended up panicking as they started running IV at the same time that they were attempting the gas. I was really glad to be in the room with her, but hate that her last minute awake was scared and in pain. 

Otherwise, all has gone smoothly and we should hear an update in a couple hours. It sounds like the biggest time variable is how difficult it is to place the screws and grafts at her neck. They hope to do this with simple x-ray, but may have to use a CT scan to get them in right depending. 

More scars and a taller girl in the works. Will update when we hear more. 

(Unfortunately I can't upload photos with posts from the hospital, so we will have to add a photo update later.)

10.14.17 Surgery details

3 more days until Aimee's spine surgery. Time to start the preparations. It is almost a relief to be nearly there after these past few uncertain weeks. It is also really scary to be finally preparing for the surgery we have been dreading for years. 

For the next few days we will do hibiclens showers and MRSA prevention cream. We will work on adjusting regular medication schedule to accomodate for a 5:30am med requirement on Tuesday morning. Aimee will get checked in at 6:30am for an 8am procedure, which should be completed by 1pm. From there they will transfer her to the ICU and hopefully extubate her to a bipap machine. 

Biggest concerns with this surgery are with respiratory recovery, particularly as she will have to use muscles to breath that will be cut or impacted by the rods. Of course, pain management will also be a really big deal. Even though they are very careful with neuromonitoring during surgery, it is also a risk to her spinal column and potential for nerve damage. At the least, there is likely to be nerve changes. 

Aimee is still having challenges with her last bolus of food each day. She is gagging or even losing the meal frequently, even though we still haven't pushed her to have as large of meals at the normal rate. At this point, we will just continue to monitor distress and cease the feeding if needed. Otherwise she is very healthy and calm. Once we get through this next surgery, we will have to revisit what is going on with her feedings and decide if there are other changes we can make to help her tolerate them better. At this point, there just isn't enough time for trial and error. 

10.12.17 Aimee is back

Yesterday was a real day. Well, aside from being stuck inside, having to use gloves to touch Aimee, and the boys not being allowed to interact with her at all. This time of year, we would typically bundle her up in a heated jacket, heat packs in her wool socks, and a poncho over her head to go outdoors. Right now we are keeping her in her bedroom and being as careful as possible to keep her strong and healthy. It is a bit sad to be sitting here all day when we normally would be working outdoors in the cool sunshine. Sad to let the rest of garden go and the outdoor chores sit undone. 

However, it is worth it and working. Yesterday, Aimee was back! She played! And she laughed! And then she cried. It was a normal type of Aimee day. She commonly will have this type of pattern. Like an infant, she will play and laugh enthusiastically until she is worn out. Then she is grumpy and complains/mildly cries until we can get her calmed to sleep. She is an emotional, passionate person. She is full of life and radience. And it is so good to see that her spark is back. 

Tomorrow we will work with the surgical nurses over the phone to figure out all the pre-procedure plans, the equipment that is needed on hand at the hospital, and the time schedule for Tuesday's surgery. I will update with the details when I have them. 

10.8.17 Food

Happy update! Today was the first day that Aimee was able to take in all of her normal amount of food! It isn't in the same meal sizes or speed as before yet, but she is getting full nutrition. Yippee! 

10.7.17

Quick update: 

Calmer day today with a few little adjustments. It seems like maybe the "off" was a combo of pain, allergies, and possibly a UTI. I still haven't taken in a urine sample. We normally don't treat her UTIs unless her temperature drops or she becomes lethargic, but we're trying to be extra cautious with the surgery coming up. If she shows any additional clues towards that end, I will request meds to get it cleared. 

Thank you to everyone who messaged us and has been praying for Aimee's health with us. We are keeping her in mock isolation in her bedroom for these next 10 days. She made me pretty nervous, but so far, still moving forward!

10.6.17 Off

Something is off with Aimee and we're trouble-shooting. The last 2 nights she has not slept well. Last night particularly, Aimee was very agitated, high heart rate, and low oxygen. We are praying that it is not a cold. This morning it seems more likely that she has a UTI from the catheter results and her vitals. Oddly hoping that is the case. It would make sense with the enima difficulties that she would have another infection cropping up. Planning to save a sample next time I cath to confirm our suspicions. 

Please pray that Aimee would stay healthy. It is overwhelming and scary to send her into major surgery, especially 2.5 weeks before baby boy is due. However, if she gets a cold, she won't be able to have the surgery until the spring. This just means progression of both scoliosis curve and restrictive lung disease. We really want to maintain what she has now. 

Jesus, protect Aimee from this cold bug in our house. Guard her lungs from infection and allow her to be at her best going into this surgery. Give us wisdom to interpret symptoms and to know what steps to take. Amen. 

10.3.17 Post-Op

Aimee and I spent today in clinic appts. She made good forward progress yesterday and took in bigger feedings. She did much better today compared to last week, spending 8 hours in her chair and then coming home to spend an hour in her toilet chair. Getting her settled for the night and she is overall calm with no major pain. Progress!

We started off with an orthotics appointment to have her AFO braces adjusted and re-strapped. They were causing bruising and redness on one foot in particular, so we are hopeful that adding in a gel pad to that brace will help. 

Next we had a 90 minute appointment with the Neurodevelopmental clinic. This doctor helps coordinate all the different care that Aimee receives and provides support for outside therapies, homecare, ect. We discussed everything from puberty changes and skin issues to school absences and surgery implications. 

Next we met with the surgeon who put in the cecostomy. He checked over the wounds and recommended using a steriod on the granulation tissue that is already growing around the site. He is hopeful that that is the cause of the bleeding and discharge, but the tract is also still healing. It will continue to be tender for awhile longer. 

Lastly, we met with Aimee's GI specialist to work on a plan for what adjustments to attempt with the cecostomy. Plan A was not successful. We started with Plan B tonight and set up Plans C, D, E, F, and G. (Sounds like a Dr Seuss version of colon flushes!) Plan B was not successful on the first attempt tonight, but we will give each plan one week to work before moving to the next. We also discussed how to handle involving the GI specialist in the upcoming surgery recovery and how to insist on their involvement while inpatient. She did warn me that there may be nerve changes from the spine surgery that affect Aimee's bladder and bowel functions. There is no way to know ahead if these changes will be positive or negative. 

From here we will continue to slowly work Aimee back to her baseline. We are really praying that Aimee stays safe from sickness. Caleb picked up a cold from somewhere sadly and we are keeping them seperated. Please pray that Aimee doesn't catch it. She won't be leaving the house until her surgery day 2 weeks from today, except for a couple of midwife visits with me. Praying, praying that she stays well!

10.1.17 Tired

Thank you everyone for praying for Aimee yesterday. She did finally calm down late last night after skipping a couple of meals, more pain medicines, and her night sedative. She is exhausted today, sleeping the day away on oxygen. It is a nice, calm reprieve for Ed and I going into this next week. 

Aimee has several post-op appts coming up on Tuesday. We had hoped to be farther along at this point, but are still making progress overall.