Ty asked me to try to update everyone on how Evie is doing. Ty and I traded places on Tuesday Feb 5th. I have really enjoyed being with Evie. This week Evie has gotten noticeably stronger. She is venturing from her bed unaided fairly frequently.
Tuesday February 5th
Evie officially began Peritoneal Dialysis (PD) on Tuesday soon after I arrived! She dialyzed for 5 hours, half of a full session. She isn't allowed to move much while connected, so we stayed in our room and hung out doing crafts and watching movies. Everything went very well.Wednesday February 6th
We spent the bulk of the day on Wednesday also doing PD. This time the doctors wanted to do a 12 hour session because they wanted to try to take as much fluid off as they could. Unfortunately, she began having a lot of pain as the day progressed. During the time that the dialysis fluid was being removed from her abdomen in preparation to refill it with fresh fluid she began to have quite a bit of what they call "drain pain." They discontinued the treatment at 10 hours instead of completing it at 12 hours. Despite the shortened session her body gave up nearly a liter of excess fluid! :-) All in all we were happy with how things went.Thursday February 7th
Evie had been scheduled for Friday February 8th to have a Gastrostomy or G-tube placed in her abdomen. She currently has a Nasogastric or NG-Tube, which enters her body through her nose, and runs down her throat to her stomach. It is uncomfortable, makes her self-conscious, and is a bit too temporary. Due to the upcoming surgery the doctors wanted to make sure that she was in optimal condition. Therefore, she had an early session of hemodialysis. She still had quite a bit of fluid to give so they chose to dialyze her for 4 hours. We finished in dialysis around noon. Due to the troubles we had the night before the doctors wanted to try a different type of PD called the Tidal Method. Instead of filling her abdomen with PD fluid and then completely draining the fluid every hour as is done in the regular method the machine fills the abdomen the solution sits for a while and then half the fluid is drained. The abdomen is then refilled to its original capacity. This process is continued throughout the session until the last drain when the abdomen is then fully drained of the PD fluid. Evie tolerated this method much, much better. As her catheter site heals more the original method will likely work fine.We initially did 5 hours of PD using the Tidal Method. Finding that this method worked better it was decided to continue thru the night. So, she went down to hemodialysis at 7:00am did a 4 hour session then a 5 hour session of PD in the afternoon to the evening and then did PD thru the night lasting about 13 hours. So after 22 hours of dialysis in 24 hours she was *VERY* well dialyzed for her surgery on Friday morning. Evie has been a trooper throughout all of this. She has been in very high spirits. I think she’s seeing the light at the end of the tunnel.
Friday February 8th
Evie continued dialysis until 9:30am when she was scheduled to go down to have her procedure. She was happy and spunky. She was hoping to be able the ride one of the tricycles around the unit before transport came for her. Unfortunately, they were a little too quick for her. When we arrived at pediatric surgery we were told that we had been bumped to a later time because an emergency case had come in. So we headed back up stairs. Evie was perfectly happy about this because it gave her the chance to ride the tricycle. She found a friend, a couple of years younger than her, to ride with. They spent the next 30 minutes riding around and around the unit. For the first 15 minutes I tried to keep up with them but failed miserably. (In my defense I am 6 months pregnant!) I began cutting through the door in the middle of the unit that connects the one side of the unit to the other. I was pretty tuckered out by the end of the half hour. But Evie was still going strong. The girls decided they wanted to play in the little girl’s room. They worked to put a 100 piece puzzle together while her mom and I talked and shared stories. At 11:30 they came back for Evie and we headed back down to surgery.Evie was grateful to have been able to play and was happy to go to her surgery. She was looking forward to having the G-tube placed and getting the NG-tube out of her nose. Everything went beautifully. She was doing well waking up from the anesthesia until she saw the IV they had placed in her arm while she was asleep. Let me just say she was one angry little girl. I had failed her! She has been through so many surgeries it didn’t even occur to me to bring up the fact that she would be getting an IV after they put her to sleep for surgery.
She gave me the consequence for my actions: she said that if I ever did that again I would not be allowed to talk to daddy for a whole day not even if he called me. I told her that sounded fair. I felt so bad! She had a good rest of the day/night. We kept her well medicated so her pain was minimal. She was allowed to eat dinner, she did a good job of it. The day was not without its bumps in the road. While she was in the recovery room I realized she looked kind of puffy. I asked how much fluid she was given (intravenously) and they told me around 650 ml’s. To me that sounded like too much.
The anesthesiologist came to talk to me just as we were headed back to Evie’s room. She apologized and told me that a miscommunication had occurred between her and her assistant. The anesthesiologist had told her assistant that Evie was “dry” and then proceeded to tell her “and we are going to keep her that way.” The assistant didn’t hear the last part of the sentence so she assumed that like a “normal” child that might come to them dehydrated she needed to rehydrate her, and she proceeded to do so. So the benefits of yesterday's marathon dialysis session were erased. The only upside to this part of the story is that the doctors had changed their minds and decided not to remove her hemodialysis catheter yet, so hemodialysis is still an option for fluid removal.
Saturday February 9th
I was woken up by the nurse at around 8:20am to let me know they had decided to send Evie back to dialysis between 9am and 10am. Transport came at around 9am and we headed down. Evie had slept very well and was feeling well and happy. We had a good session but it tuckered her out. She had not received a night feeding because the NG-tube in her nose had been removed and the G-tube needed a little more time before being used. No food through the night and dialysis again made her tired. She took a 4 hour nap this afternoon and woke up happy. They began feeding her through the new G-tube this afternoon and will continue through the night.A Few Thoughts
Evie is doing great and making the progress that everyone is hoping for. We are planning on being discharged early on Monday morning February 11th and going from here to the offsite dialysis center to be trained on how to safely administer peritoneal dialysis (PD).Life has changed, yes. But that’s OK. Evie is still with us and that is all that matters. Live is all about change and how we choose to act and adapt to those changes. We love you all and thank you so much for your loving, never failing support. We know that the many countless prayers that have been given and are still being given have been answered and will be answered! We don’t know all things or why things happen but we do know that Heavenly Father loves us even if things may seem “unfair.” The Lord rarely takes our trials from us but He will always be there to lift us up and strengthen us (and others) through them
Here are a few pictures of the rest of us during my 5 day ban from the hospital... the first two are from a "date" at the local disc golf course. The last one is our pre-dinner festivities at the end of the date.
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