Monthly Archives: February 2013

Invasion….

Invasion....

Ryleigh’s room has been invaded by her Intravenous Pole! It takes up half of the room. She has been given more medicine to help with her pain but unfortunately her PICC line could not take anymore volume. So, she had to have another IV in her arm. I have lost count but I think we are almost at 20 for IV’s in the last 8 weeks. The medication has her sleeping better although we are not sure whether her pain has improved or not. The pain team said the first 3 days are the worst and we are just finishing day 2.

Chloe and I are leaning on each other as we get the dirty looks and grumblings from Ryleigh. We are both looking forward to seeing her smile again.

A Challenging Cycle

I wish for once things went smoothly for my dear Ryleigh. It has been 36 hours since the finish of her surgery. She has not moved from her flat on the back position she arrived in. She is in pain and tries to use her pain pump but the medicine makes her extremely sick to her stomach. She rests with a cardboard bowl on her chest because she is afraid she is going to get sick all over the place. Her nurse last night came in every hour and Ryleigh complained about being really sick – so sick that she can’t take her liquid tylenol. Her tummy could be nauseous for a few reasons – her bowels have temporarily stopped working and that affects the stomach, her pain meds, and anesthetic. She has been given odansetrone and gravol but they don’t seem to get rid of the nausea for very long.

Ryleigh is so miserable that any smells like my coffee, my toothpaste, my lipbalm, my deodarant, my gum, my breath….cause her to be sick to her stomach and she is very quick to tell me so with her hand gestures and whispers (as it hurts to talk). It is hard on me because she does not want any interaction with anybody — so trying to figure out what she wants is hard. She even said that listening to us talk hurts!

Some of the pain team, surgeons, and nurses for the most part don’t understand why she is not recovering yet. They even said numerous times that the incision wasn’t that big and she should be in less pain. Really? I think they are looking at her as a patient who has not been chronically ill for almost 2 years. It has been hard on her body and perhaps she is not a regular surgical recovery case! I have had to advocate and let the nurses know about her history as they do not have the time to look through her huge file. This seems to help them understand why she may be struggling a bit more. It was a frustrating day yesterday.

However each day is a start over! Her night nurse was very understanding and saw Ryleigh as she was – a pain ridden, nauseous girl. She did her best to make sure all her gravol and odansetrone were given routinely so Ryleigh did not have to ask for it. She also took the time to discuss Ryleigh’s history with me and said that she reported to Ry’s day nurse about how Ryleigh is struggling. Also, this morning her surgical team came in with a different lead fellow or resident (I was not sure) and she confirmed that what Ryleigh is feeling is real. Even though in their experience she should be on her road to recovery that some children who have been chronically ill struggle with recovery a bit more. Also, some react to pain medication in this way and they have some other options but because she is on blood thinners and an IBD patient they have to be careful what they give her. They told her that this will get better but she is skeptical – she has been hearing that for the last two years and wonders if this too isn’t true?

All in all it continues to be challenging. I have to put on my Mama Bear hat and advocate for her today. She looks at me with her furrowed brow and big blue eyes with the look of “Mom, do something!” I continue to feel helpless in helping her feel better. But that does not cause me to stop doing whatever I can to get my girl back. Keep calm and carry on is a fitting slogan for me and I will breathe deeply and say it numerous times today.

2nd Attempt: Keep calm and carry on

Ryleigh has been recovering now for about 5 hours.  It is interesting how the post operative truth comes about after the operation! Ryleigh is not as comfortable as I thought she would be.  She has a hard time talking and gets very frustrated if we try to talk with her.  She has phlegm in her throat because of the tubes they used for the operation. It hurts her to cough it up and that got her frustrated. She got us to put her bed up a bit and then made the effort to try and cough.  Her determination worked and now she is back to sleep. 

The nurse has been so helpful and real with me.  She is knows her stuff and let me know what needs to happen with Ryleigh while she is recovering from surgery.  She said Ryleigh will not like it and will find the next week very tough.  I need to be prepared for a cranky, upset, mad, and frustrated daughter for the next while as she heals.  Gee that sounds like fun!  I find it challenging because she does not really want any TLC from me — in fact the opposite she wants me sitting quietly beside the bed just in case something happens.  I miss the hugs and cuddles and kisses on the ouchies.  But, this is not about my needs only hers and I will quietly sit and wait for her next gesture or grumble. 

 

But a wise friend of mine reminded me that a few days of this is nothing compared to length of this adventure.  I will keep calm and carry on.

Surgery Over!

Ryleigh’s surgery went really well. She is in her own room on 3R and continues to be well taken care of.  Her surgery was 41/2 hours from start to finish.  The surgeons shared that everything went as planned.  The only little blip is that her hemoglobin counts had dropped this morning and so she had a blood transfusion right before surgery.

The key now for the next few days is pain management and getting her digestive system to compensate for not having a large intestine anymore.  They are good at making her comfortable and helping her with the pain that she is feeling.  She continues to be on the pump and helps control the amount of pain medication that she gets. 

Her stomach looks amazing.  The stoma is in but it will take a few days for the small intestine to compensate for the job the large intestine did.  The large intestine absorbs all of the water the body takes in  and so know the small intestine has to learn to do this for her. 

All in all – this has been a positive day. 

Modern Medicine

Modern Medicine

This is Ryleigh’s intravenous pole the night before surgery. It is an amazing apparatus. The pumps are mini computers that hold all the information about the medications she is getting, administer the medication based on the correct rate, and let us know if there is an occlusion or something else. She started with one pump and one tube. Tonight she has 5 tubes that blend into to access points in her picc line in her right are. She has her heparin to help with preventing blood clots (turned off 6 hours before surgery). There are two bags with tubing that are there for intravenous nutrition – this provides some calories, proteins, electrolytes, vitamins and minerals. The last bag is her pain “pump” which has pain medications for her to be comfortable and rest as much as possible. Technology is a good thing!

Explaining Surgery

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CAREFUL SOME OF THE INFORMATION COULD MAKE YOU A BIT SQUEAMISH

I have had numerous people asking about the surgery Ryleigh will be having and what happens afterwards. I asked Ryleigh if this was okay and she thought it was a good idea. She said that she would like people to know what is happening to her. I asked if she was embarrassed especially about the stoma, ileostomy, and pouch. She wisely said that this was not something she planned or is her fault – why should she be embarrassed. I hope that she will feel this way when she leaves the hospital setting and gets out and about.

The surgery will take about 3 hours and there is no guarantee that it can be finished laparoscopically. If there are any complications they may have to do the traditional surgery.
Ryleigh’s surgery is a little more complicated than others because she is still on prednisone and blood thinners. But the teams here have been so wonderful and they have taken this week to consult and collaborate to make sure her surgery will be as safe and successful as possible. They are wonderful.

This information was adapted fromhttp://my.clevelandclinic.org/services/total_abdominal_colectomy/childrens_overview.aspx

What is a laparoscopic total abdominal colectomy?

A laparoscopic total abdominal colectomy is an operation that removes the large intestine.
(area shaded in diagonal lines)

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The term “laparoscopic” refers to a type of surgery called laparoscopy. Laparoscopy enables the surgeon to complete the surgery through very small “keyhole” incisions in the abdomen. A laparoscope, a small, telescope-like instrument, is placed through a small incision near the bellybutton.

Once under anesthesia, the surgeon will make a small cut (about 1/2 inch) near the bellybutton. A laparoscope will be inserted into the abdomen through this incision. Images taken by the laparoscope will be projected onto video monitors placed near the operating table.

Once the laparoscope is in place, the surgeon will make 4 or 5 more “keyhole” incisions in the abdomen . Surgical instruments will be placed through these incisions to complete the surgery.

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After the large intestine is removed the doctors will create a stoma.

A stoma is a surgically created opening in the body that replaces a normal opening. Stomas serve as new sites for basic bodily functions.A stoma is an artificial opening to or from the intestine (which is also known as the gut or bowel) on the abdominal wall usually created by a surgeon
Stomas are carefully sited on the abdominal wall so that they can be hidden and yet still function. With an ileostomy, a special bag is attached to the site that collects the faeces. The opening on the abdominal wall must be well cared for because bowel contents can irritate the skin, which results in ulceration and infection. Unlike at the anus, no mechanisms are in place to regulate the flow of faeces. The use of appliances such as a bag-and-seal over and around the stoma can, in turn, cause damage to the skin from their frequent removal, and from allergy to the materials used.

Ryleigh is taking this all very well. This does not surprise me anymore – her wit, positive attitude, and resilience continues to inspire me. With support from the ostomy nurse she has come to terms with understanding what will be happening to her body. She goes through the wide spectrum of emotions. She is trying to find the humour in things. The nurse has said that we will most likely experience the stages of grief because of the life altering surgery. We are prepared for this and will support each other as best as we can.

Pain management, I am realizing, is the key right now. Ryleigh is in lots of pain she says it is like a wave on the pain scale from a 3 to a 6 to over a 10. She is now on a infusion pump where she controls the pain medication. It has allowed her to be pain free. It has been an eye opener for me because I have had to come to terms with the realization that Ryleigh has been in chronic pain for most of the last two years. She is less grumpy and much easier to talk with and be around. I wish I was more patient with her the last two years — she had every right to be upset and grumpy. Even Ryleigh is not familiar with the feeling of being pain free and it has been a challenge for her to think this is how she should be feeling.

Because of the pump she is needing a bigger IV stand. It is almost like a small tree! This is a picture of Ryleigh pain free! In front of her giant IV stand.

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Waiting — patiently!

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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.

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Back in the Hospital

Ryleigh has been admitted back into BC Children’s Hospital. She will be having surgery we are just not sure when. There are no other options. Tomorrow we meet with the surgeons to talk about the options she will have.
Ryleigh will need to have her entire large intestine removed. Right now, that is all we know. Ryleigh is surprisingly positive and chipper. She is scared about what is going to happen but she is looking forward to the time when she is not in pain. She has been told that medicine, procedures, etc will help her but it has not yet — she wonders if this will really work.
Once we know more — I will share.

Relief….???

Tonight we heard from one of the members of the GI team and they have been putting things in motion to get Ryleigh surgery time. It won’t be this weekend but will happen sometime next week….possibly even Monday. The nurse is not sure what surgery Ryleigh will be having but it will definitely be removing part or all of her colon. We don’t know if she will need to wear an ostomy bag or not — or whether it will be temporary or permanent. A lot of unknowns. We will spend the weekend at Easter Seal House monitoring Ryleigh and relaxing. If she gets worse they will admit her but the team and I decided that it is best to stay at the house until she needs to be admitted for surgery. More relaxing for her and we can stay with Chloe.

At first Ryleigh was scared but after a bit she started being quite peppy and cheerful. I was a little surprised by the behaviour. I asked her if she was happy to have the surgery and she said oddly she feels a sense of relief. Both her and Chloe are playing a board game and seem to be quite content.

I am once again totally amazed by my daughters. The positive attitude and resilience they both have shown inspires me. Take a moment to embrace the innocence and simplicity of our youth – they see things in a less jaded way and truly have so much to teach all of us. positive-attitude