We are settled in a room on the same floor she was on in January: 3F. This time one with a window. Today was a refreshing, sunny day and we were lucky to have the sun shining in the room most of the day. It was beautiful here today – no rain and very mild temperatures; spring like!
I am grateful for the airbed we purchased – it inflates in 3 minutes and deflates in 3 minutes
Ryleigh continues to be in the middle of her flare — she is not digesting food very well and it is going right through her. Frequent trips to the bathroom have made it challenging to get out and about. However, today she made two trips to the cafeteria and a trip to the teen room to play a board game with Chloe. It is important to keep her moving, get out and about not only for her spirits and to make sure she keeps her blood circulating.
Today it was a consultation day with three different medical teams – gastroenterology, hematology, and surgery. Sometimes more than once — actually each team with different members of the team – met with me today. Now, I have learned from our previous stay — don’t ask the blood team about the stomach and vice versa. So, I listened to each team trying to decipher the medical terms and the information they were sharing.
Visit 1: GI Resident – connecting with Ryleigh about how things are going, pain level, trips to the bathroom etc. No news about what is going to happen except for the idea that surgery seems to be the only option
Visit 2: Hematology Resident – meeting with Ryleigh. Explain her history to him. He is concerned about the fact that she has clotting issue only a month ago. Needs to talk with GI and surgery and see if Ryleigh can wait for surgery.
Visit 3: Attending Physician and Fellow for GI – checking in, asking about pain management and symptoms. I explained what the Hematology resident said and they will have to have a conversation because they feel that the surgery needs to happen and blood issues can be managed.
Visit 4: Attending Physician and Resident Hematology – Discussed concerns in a more clear way. Evidently they had discussed the issues with the GI team. They are still concerned about the blood thinner and clotting issues. Ryleigh will need to be changed over from her current blood thinner to the IV blood thinner – heparin. Also, the hematology team wants to make sure that Ryleigh’s filter is removed from her vein before she has surgery.
Visit 5: Surgery Resident – Came in and went through all of Ryleigh’s medical issues. I was impressed because Ryleigh explained most of it herself. I guess she is becoming more comfortable talking with the doctors.
Visit 6: Surgery Fellow – He came to explain the benefits and risks of the colectomy. He said
will need to have her entire colon (large intestine) removed. This will be the first surgery she will have. This will happen sometime in the next week or so. She will need to have a temporary ostomy to help manage getting rid of stool. This part makes us all a bit squeamish but tomorrow a nurse will come and help us understand the process. Apparently many teens have this and manage all activities (except maybe full contact sports – don’t think Ryleigh is the rugby kind of kid!). She can even go swimming — which is one of her favourite things to do.
Once Ryleigh gets back to her healthy self (1.5-2 years) they will do the second surgery which basically is making a pouch to replace her colon. This way she can have close to normal bathroom functioning. After that has demonstrated that it is working — she will have a third surgery to close up her ostomy hole (stoma). This doctor explained the success rate of this type of surgery. Ryleigh has some complexities — her bleeding/clotting and the fact that her immune system is repressed.
This means she could have clots and infections when healing. This is the best option for her yet, she will have to be watched closely after surgery. He seems to think she will be having surgery on Monday.
Visit 7: GI Fellow comes to visit at 9:00pm to touch base with the latest developments. After some collaboration the hematology team has decided that the best thing for Ryleigh is to get her filter removed, change over to heparin, and wait a bit more before she has surgery. She will have an ultrasound tomorrow to see how her current clot is fairing. The GI fellow said that they will all meet together to discuss the best option for her. It is looking like she will be staying in the hospital to deal with her pain, keep fluids up, and possibly receive transfusions if her hemoglobin drops because of the bleeding from her colon. Then when the filter is gone and hematology feels she is ready she can have the surgery. This may be next Monday or later. So we will wait patiently.
Today despite all of the medical visits, Ryleigh and Chloe got to spend some quality time together. They went for some walks together and played a board game in the teen lounge. Ryleigh also ventured to the big cafeteria with Chloe and myself and we had a family meal together. It was nice to do this in the hospital setting. We also had a lovely visit with my step mom, Maureen and her friend Carol. Maureen will be coming out again tomorrow. It is nice to have some adult company.
Ryleigh is reluctantly ready for the idea of surgery. She is willing to hear about what is going to happen in small bits of information. She appreciates the technical information but does have some difficulty processing all the details at once. I get the information from the different sets of doctors and then as the day goes on we talk about what is happening to her body and what the doctors are recommending.
She continues to manage her pain — nights are the worse and tonight she asked for the morphine. She is reluctant but likes the relief… so do I.