The last few days have had moments of laughter, tears, frustration, and some anger. One thing that was made very clear to me today by Ryleigh’s psychologist here at BCCH is that Ryleigh’s determination and strong will has helped her make it this far in getting better. Ryleigh has developed some good coping skills for pain.
Ryleigh was making good progress the last few days. On Sunday she started eating real food and it seemed to be going well. We had a surprise visit from the Rancier family as they had a delay in heading to their spring break vacation in Mexico. Ryleigh made the effort to go to the main floor and visit for a bit. It was really nice to see her laughing and talking with her friends.
Ryleigh has some goals to meet before she can be discharged:
1. Walk on her own for an extended period of time
2. Eat a regular amount of food
3. Drink 1500-2000 ml of fluid a day
4. Ileostomy working regularly and producing
Ryleigh is on her way to meeting these goals. It has been exciting to see her get better. BUT, on Monday she had a very rough day and I thought she was heading to another bad turn.
She started out her morning feeling nausea and pain. Similar to what was happening when she had a blockage — not again I was thinking. She ended up being in intense pain again and vomiting. The nurses rush to get some meds into her IV and one of the lines to her PICC broke.
So she needed to have a repair done on her PICC which was quite intense and time consuming.
Then she had her ostomy bag changed but the bandage over the incision caused it not to heal…so it leaked which grossed Ryleigh out and cleaning had to happen. Then she needed to have some of the bandages removed and her bag reattached.
To top it all off – she had to have a blood transfusion because her hemoglobin went down to 60. What a day!
It was a miserable day and I felt so bad for her. However the evening got better. The doctors do not believe she is having another partial blockage – instead they think that her intestine is not moving efficiently yet. It may be having difficulty moving food through and at times it gets slowed down and stops. This may take 3-6 weeks for her digestive system to start working properly again. We need to be careful but not paranoid.
This morning Ryleigh was energetic, less pale, and ready to meet the day’s goals. She has tried to eat more regularly, drink more fluids, and sit up more. She went to the teen lounge with her sister to play video games for an hour. Small but wonderful feats. The doctors are impressed and are hoping she can be discharged on Thursday or Friday of this week. They would like us to stick close for a couple of weeks to make sure she is doing all right. They are concerned about dehydration the first 6 weeks or so as the small intestine starts to take over for the large intestine.
We are excited about finally getting to leave the hospital. We are a little apprehensive as the last few times we left — we had to come back or stay. Ryleigh looks better and seems like she is feeling better. It will take some effort and time to help her with reconditioning. She has her own wheelchair and will use that for any long excursions and outings.
Let’s hope that all works well and we are staying all together at Easter Seals House on Thursday Night.
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