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.