9.30.17 Tough Times

Poor Aimee has had a really rough day. After the long day on Thursday at the hospital, there was some extra bleeding and tiredness. When we attempted a bolus enima through the c-tube in the afternoon, there wasn't much output and even after an hour and a half in her toilet chair, not all of the liquid came through. She was really distressed and needed big pain meds. Today she has been distressed all day. We started early with 4 different enimas/endeavors and no success... like nothing came back out! She was understandably very upset with her colon full of fluids and cramping. It took 5 1/2 hours to finally get the fluids back out. She is sobbing in pain, heartrate is skyrocketing again into the 180s even with oxicodone. Her cecostomy site has some redness and pus discharge. Very slight fever, but that could very well be from being so worked up. 

9.28.17 Pre-Op Appts

What a long, thouroughly confusing day of appts! 

We started with a Pulmonary visit to get surgery approval from a respiratory standpoint. Aimee's pulmonologist did say that  the during-surgery-portion should be fairly similar to the hip surgery, however, respiratory recovery will be more challenging as the surgery includes the muscles used for breathing. He did remind me that we will not see an increase in pulmonary function from this surgery, but rather are hoping to stop progression of her restrictive lung disease. Only concern was the higher bicarbonate level Aimee had with her previous pre-op labs for GI, so we popped over to the lab for an electrolytes draw. 

Next we met with the anesthesiologist. It was really helpful for them to gather information from her surgery last week, so they are very prepared for Aimee's particular needs going into this surgery. They were just as pleased as we were with the ultrasound iv placement being used ahead of gases. 

Then Aimee went into radiology for a set of 4 x-rays. We did have her hips looked at and everything is well in that area. They did another seated x-ray for goodness knows why and a set of spinal traction x-rays. 

Then we met with the orthopedic nurse to discuss surgery details. I asked a lot of questions and she gave me a lot of information. This sounds like a good thing, except our last appointment was with the surgeon himself and he gave us completely different info. Basically the nurse thought we were having a different spine procedure done. I'm honestly not sure I got it all clarified. :/ 

From here we headed back to the lab for 3 more big blood draws to prepare for transfusion, ect if needed. The surgeon said that it is much less likely with the spine surgery to need a transfusion. 

So, the basic plan is that Aimee will go in on October 17th for a 4 hour procedure. There will be 2 bone graft fusions at the top of the spine and 2 at the pelvis. These are where the screws will secure the rods into place. There will be a tunnel made along the spine between the muscle and the perimysium layer which will house the rods. There will only be the 2 incisions top and bottom, the remainder will be fed through this tunnel. He does not plan to brace her afterwards, which would be a 3 month process that most typical kids with early onset scoliosis would go through. 

After the procedure, Aimee will be transfered to the ICU where she will hopefully be extubated to bipap. Once she is stable enough, we will transfer down to the floor and get ready to bring her home. We hope to only be in the hospital for 5 days, though she will need to be on lots of pain medications throughout her 6-8 week post-op period. We hope that by Thanksgiving, she will be in less pain. In the long run, stopping the twisting/curving of her spine should be more comfortable for Aimee and simpler for us to care for her. We are nervous going into this major surgery, really the biggest one she has had. We are also confident that it is what Aimee should have done to maintain her comfort and good health. 

Please be praying for Aimee's health. It is more impairative than ever that she not get any respiratory sickness over this coming 2 and half weeks. Also, please pray for the rest of our family as this is a heavy stress season and we are overwhelmed. 

9.27.17 Successes

Finally some good news to share. Aimee was able to take in her full fluid goal and her low food intake goal yesterday without pain! Granted, we did keep her on pain meds all day, but this is still really good progress. Today we will attempt a slight increase in calories. 

Also, we were able to use the c-tube 2 times for large bolus type enimas on Monday and Tuesday. It went really well for a starting point and Aimee showed no significant distress throughout the 60+ minute process. It hasn't resolved the issues we were having yet, but we are feeling really hopeful at this point. 

Tomorrow we have a big day of pre-op appointments for the spine surgery that is 3 weeks away. Praying that Aimee is able to tolerate being in her wheelchair for the 6 or so hours that she will need to be. We haven't had her spend much time in it (beyond the drive home from the hospital) due to the extra pressure it puts on her belly. 

9.25.17

Not much to update. We haven't made much progress, except that we re-upped pain medication use and successfully avoided causing a lot of distress last night. Still haven't actually fulfilled her discharge plan. Today is a new day though and it is time for Aimee's first little feeding. 

9.23.17 Pain

Please keep praying for Aimee's pain level. She is very distressed tonight, though we only made it part way through her fluid needs and low food plan. 

9.23.17 Home

Sigh. We are so grateful to have Aimee home. She slept really deeply, much better than she was sleeping at the hospital. Her heartrate dropped down into the 50's (which is normal for her when asleep) last night. Inpatient I don't think it went below 90 ever. She is still showing distress with food with higher heartrates, like she has when in pain. These have been 140-160, rather than her normal awake around 100, but not that 190 that we were seeing during pain panics. We are sticking with a similar fluid schedule for Aimee for now and watching out for distress. It seems like she really needs this next 3 weeks to recover before the next round. We need it too honestly. I am nauseously exhausted and Ed really needs rest too. 

We're praying for Aimee's continued progress and that she would be able to take more calories without pain. We are praying for protection of her health over these next weeks so that she will be strong and prepared for the spine surgery. We are also praying for baby DeVoe to patiently wait to arrive until his due date in 6 weeks. 

For some reason I was not able to post photos with my updates from the hospital. Here are a few snapshots from this week:

Before heading to the hospital Monday morning

Aimee was nervous in the waiting room


She was very entertained by this fun gown that blew warm air on her though. 


Daddy praying for a smooth as can be procedure


Pre-surgery belly

Welcoming Aimee back when she started to wake up afterwards


Tuesday Aimee felt great before we tried any feeding and before her gut woke up

Then pain started


We tried our best to comfort and help her


Passing a wheelchair pain test late Friday night to decide she could make it home

Too tired after all her meds to be excited about going home 

Belly post op day 6 with a new c-tube

9.22.17 Cecostomy 17

Aimee has officially been discharged and we're heading home! 

9.22.17 Cecostomy 16

One more little bolus of food and a wheelchair test stand between us and the door. A few more hours and we could be wheeling down the hall. Although we know Aimee is not nearly back to her baseline, she should recover faster in her own bed without 15 blood pressure checks during the night. (Not exaggerating. Aimee has really unusually low blood pressure patterns and it freaks the nursing staff out continually.) 

9.22.17 Cecostomy15

A peaceful (as it can be inpatient) night. Aimee is finally her calm, responsive self today and we have a plan for how to get her home. We are still seeing the same pattern of distress with food, though not as dramatically as before. We are not going to be able to get her on as many calories as she needs for several days probably, so we fully switched our focus. We are aiming for staying hydrated instead of nourished for now. We are attempting to give round the clock water with little boluses of food throughout today. If we have success with this plan, we won't be reliant on IV fluids and we hope to be heading home to finish up this gut recovery. The doctors had hoped to only have Aimee stay for 1-2 nights, but with her neurogenic bowel condition, everything just works slower. 

In other news, we have made some progress with the insurance company who denied the supplies for the c-tube. Hopefully by the time we are ready to use it, we will have it fully sorted and supplies will be on their way. 

9.21.17 Cecostomy 14

Overall good progress today. We are trying to get Aimee to take in enough fluids to wean her off of IV. It may take us some time to get back to her typical schedule, which we can deal with at home. For now, even a continous feeding would be fine, if we can get Aimee to tolerate that much fluid. We are watching her heartrate, hoping it will go down so that we can try to add more fluid at a higher rate. We are moving in the right direction, but need to get farther to make it home. 

Another issue we are currently having is with the insurance company not wanting to pay for the supplies for this new tube since some of them are the same type of supplies used for the g-tube. Hoping I can get that sorted out in the morning. One of my least favorite tasks is dealing with the triangle of insurance companies, homecare companies, and the doctor's staff. 

9.21.17 Cecostomy 13

So far mostly positive overall today. Aimee is worn out from last night and basically sleeping constantly, but she has tolerated a 60 ml feed and we are just now starting a 90 ml feed attempt. She has had some pretty major bowel leakage from the c-tube site. Hopefully that will stop as it heals. 

9.21.17 Cecostomy 12

Aimee slept really peacefully through the night with just the regular pain medications throughout! She woke up calm. After her meds this morning, we will make another 60

ml feeding attempt and go from there based on her reaction. 

9.20.17 Cecostomy 11

Finally some peace. After a horrible panic attack for the past 2 hours, we were able to add oxi and her sedative, plus the other pain meds she was already using. She really freaked us out with a terrifyingly high heart rate and jerking/arching her body. We are praying that these meds will allow her to rest tonight. Ed and I are exhausted after that and I can't imagine how much more she must be. 

9.20.17 Cecostomy 10

No good news at this point. Aimee is sobbing, even after more morphine. With the first dose she was able to tolerate 60 mls of food over an hour and then 30 more an hour later (for reference, she normalling gets 290mls in a "meal"). Since we had to stop that feed, she hasn't stopped crying, moaning, jerking her arms around. Fever is back, flushed skin, soaring hear rate, and dropping oxygen. We're praying that she will calm enough/wear herself out enough to sleep soon.

9.20.17 Cecostomy 9

Still an upset, distressed girl. We've backed off on pushing feeds, re-upped IV fluids, and added morphine. 

9.20.17 Cecostomy 8

Aimee woke up distressed and crying a couple hous ago. Hoping the pain medication and an enima will help her relax enough to tolerate a small feeding. 

Blood pressure is better, fever is gone, and oxygen/breathing are normal. Heart rate is better. Hoping that trying to put food in her stomach again doesn't cause any of those issues to return. 

9.19.17 Cecostomy 7

More of a rough evening as we gave Aimee another small feed. She showed distress with a high heartrate, flushed skin, and currently a low grade fever. Her stomach is a bit distended and she just isn't digesting well yet. Hoping with a good rest tonight that she will tolerate a feeding in the morning without pain. For now we have added a pain medication through her IV. 

9.19.17 Cecostomy 6

One little 60 ml feed down. Took until this late in the day to get it sorted out with nutrition... even though we brought the formula ourselves, but still thankful for good progress! 

We spoke with the anesthesiologist. He said that the brain disorder specialist was actually wrong and our original guess was accurate. Aimee is not resistant, but very sensitive to anesthetic. Thankfully he used the monitor rather than just taking the specialist's word for it. Aimee needed very little anesthesia and I'm sure this is why her recovery has gone so well. He did say that for the spine surgery there will be a full eeg monitor on her brain, which will also allow them to ensure the correct amount of anesthetic. 

9.19.17 Cecostomy 5

Aimee had a pretty great night. A little low on oxygen compared to her normal and really low bloodpressures, which caused some stirring in the middle of the night with a risk assessment team. This is a tiny higher this morning. She also has not yet urinated on her own and when I have cathed her, there has not been much urine at all. They have added a larger dose of IV fluids and she has really perked up this morning. Amazing what hydration can do. We are hoping that at some point today we will be able to start her on slow doses of fluids through her g-tube. She does not seem to be having any pain, so once we learn about the care of the c-tube, maintain a good blood pressure, finish antibiotics, and get her tolerating normal feedings, we can take her home.

9.18.17 Cecostomy 4

We're keeping track of that anesthesiologist's name, because that was the beat experience Aimee has ever had with anesthesia. He did research ahead of time and talked with a brain disorders specialist. Basically they feel that Aimee may be more resistant to anesthetic, so they put a monitor on her head during the procedure to ensure that she was getting enough. How brilliant (and a bit terrifying to think that this was not done in the past...).

Aimee is now settled in her room. She has had no pain medication and she is calmly alert. Really incredible. The incision spots look great. The surgeon had a bit of trouble seeing, but he persisted and did not have to open her up as a consequence. We will let Aimee rest tonight and hopefully her gut will be awake enough to take her medications this evening. Hoping to start feeding her again tomorrow. Her oxygen and breathing are still a bit off, but she is doing so well. What an amazing girl Aimee is!

9.18.17 Cecostomy 3

In the PACU with Aimee working to get off of Bipap so that we can transfer to the floor. Surgery went well and was done laproscopically. :)

9.18.17 Cecostomy 2

Aimee is back in surgery. We are praying that the surgeon is able to perform this procedure laparoscopically, as this will mean much smaller incisions and much less pain. If they do have to open her up, she will need an epidural. We plan to be staying with Aimee on the floor following the procedure, but they have decided to reserve an ICU room just in case. It is much more likely that she would need to go to the ICU after this if she has to be opened up and have an epidural.

In good news, the IV placement was done by ultrasound this time before she was put under amd went really well on the first try!!

9.18.17 Cecostomy Surgery Day 1

Surgery 1 day is here. Aimee did have difficulty with the antibiotics yesterday, which made her nauseous, but she made it through sufficiently. We donned our "love" shirts this morning and kissed our boys goodbye. 

Aimee was nervous and agitated when we gave her Tilly bear and pushed her into the hospital. I think she knows that he only comes along for procedures.

Once we got her in the warmer, she got kind of excited about the adventure. She likes the warm air blowing on her and the silly sounding gown.

The warm air is putting her to sleep before she even gets anesthesia, on which we are currently waiting. She should be heading back to the operating room soon.

9.14.17 Surgery 1

Monday is Aimee's GI surgery to place a cecostomy tube. The start time is scheduled for 11am and it should be completed within 3 hours. We plan to bring her home after a 3 night stay and may be able to actually use the new port by the following week. The prep at home is definitely the most intense we have yet done for any surgeries. As they will be creating an opening to her colon, they have her taking multiple antibiotics ahead of time and on clear liquids only for 24 hours ahead. We will also do a significant number of respiratory treatments ahead to have her in the strongest position ahead of surgery. 

In other news, Aimee has been very emotional this past few weeks. We have multiple full days of tears with some panic episodes. Last week when I took her in for a wheelchair adjustment pre-spine-surgery, the PT evaluating her expressed significant concern about Aimee's right hip. She did have both hips restructured 21 months ago, so it "shouldn't" be out of joint. However, between the possible pain episodes of crying and the PT showing me some physical cues, we are going to look closer. When we go in 2 weeks for pre-op x-rays and appts with the spine surgeon, we will add a hip image on as well. Praying that it is actually her scoliosis pushing her pelvis that is causing those cues. 

The boys picked up a cold bug a couple of weeks ago. We did our best to keep them seperate from Aimee and miraculously, she did not get sick! They were pretty excited to be able to play with her again the next week. 😁  Unfortunately, with school starting and sicknesses beginning, we are now homebodies. No school for Aimee until at least Thanksgiving and no church until Spring. 😢  

We have been enjoying the last days of summer, aside from the big tears. Aimee especially loves being near Daddy's projects, preferably ones that include saws, but a lawmmower will do in a pinch. 

I will update as we have news throughout Aimee's surgery and hospital stay.