Keyan is Cathing!

We had our appointment with Dr. Mitchell on Tuesday and was told that Keyan is healing beautifully. He removed the AVC drain which is the drain that came from his belly button. He now us using that channel to drain his urine. He takes a 16 inch, 10 french catheter and carefully guides it through the channel beginning at his belly button down into his bladder. Once the catheter reaches the bladder the urine drains out. Keyan is doing such a remarkable job at self catheterizing and we are so proud of him. Once we are all feeling confident with cathing, irrigating (flushing saline in and out of the bladder through the catheter to remove the mucus) and once the bladder stretches a bit more, the other drain will be removed. To stretch the bladder we will drain the bladder every 2 1/2 hours rather than the original 2 hours. Our goal is to be able to go 3-4 hours between draining the bladder.
One word of advice, pre-order all supplies, do not wait until you must begin cathing. We were given enough supplies to last us for a day and a prescription for additional supplies. Unfortunately it takes 5-7 days to recieve the order...........after hours of phone calls I was able to track down 31 catheters! Today I found some more that will last us until the shipment arrives. A lesson to be learned.

Keyan is feeling much better!

A quick update, Keyan is feeling much better, it seems that the antibiotics are working! He is counting the days until Tuesday to get one drain out!

Today was going to be a good day....

Today was going to be a good day, it was Keyan's first day back at school. About mid-day the school nurse called and said that Keyan had pain. I immediately picked him up and watched the pain get progressively worse. After a call to Dr. Mitchell and being seen by our pediatrician we learned that Keyan has a kidney infection. We will try and kick it with oral antibiotics but if that doesn't work we will got to the hospital for IV antibiotics. Once again, lets all say a prayer.

We had our appointment with Dr. Mitchell today and received some good news. It seems that the lump was a fluid build up and happens sometimes with this type of surgery, fortunately it is resolving. We also learned that one of the drains will be removed next Tuesday! This means that Keyan will be able to start cathing independently. The catheter will go into the stoma at the belly button and to the bladder to drain the urine. Keyan is very excited to loose a drain and become more independent. He is also permitted to return to school part time................we are all overjoyed with the news. Thanks for every ones prayers, they are being answered.

I haven't posted in some time because Keyan has been doing so well and we have been so busy. We have all learned how to care for his drains and incisions and feel comfortable with it.
Unfortunately last night Keyan began having pain and discharge from his a part of his incision along with a lump the size of a large grape in the same area. He also began leaking urine from his stoma. Of course we were extreamly concerned and we contacted he doctor on call. This is when the frustration began, the doctor on call does not know Keyan or his case, so he is making recommendations acording to only our report. He said that the leaking of urine can happen and not to worry. He thinks that the lump can be a blood clot or a pocket of liquid and not to worry. The drainage may be the begining of an infection but because Keyan does not have a high fever or intense pain, we should wait until Tuesday to see our Urologist. If Keyan's symptoms worsen we will take him to the ER, if not, we will wait for Tuesday to arrive so we can see his doctor. Always a worry. I will keep you posted.

We are home!

We are home! Keyan and I are so very happy to be home, to sleep in our own bed, to take a real shower and to see our wonderful family. Keyan had a good day today, he is playing a lot of video games and board games. He is feeling minimum pain and his drains are working well. The night time is difficult because we are up so much draining and flushing. We will need to get into a routine to make this work so that we all get enough sleep. As you can see, Keyan is very happy to be home.

WE ARE GOING HOME!!

Just like that, we are going home. Keyan is tolerating everything really well thank goodness, so we packed our bags and we will be discharged at about 3:30pm. There will quite a bit of follow up care at home and back at the hospital so I will be continuing with the BLOG with occasional posts. Thanks to everyone for everything, we couldn't have done this without you.
XO

One week ago today....

One week ago today Keyan had his surgery. It is just amazing all of the ups and downs he experienced, seeing him sitting next to me now like nothing happened. Kids are so resilient.
Today is bladder day. We will find out if his new bladder is functioning as it should. One of the drains from his bladder has been clamped and we will be clamping the other one so that the urine stays in the bladder rather than flowing freely out into a bag. We will have to open the clamp every hour to drain the urine 4X and then open the clamp every two hours and see how he responds. If Keyan does well with this and tolerates a regular diet he may go home tonight. Once your feeling better the hospital is anxious to discharge you. I need to be certain that I am comfortable with everything that we need to do to care for Keyan's needs at home.

Keyan just ate the worlds best cracker!

Dr. Mitchell gave Keyan the ok to have two saltiness crackers and they were the best crackers that he has ever tasted! He ate them very slowly and savored every bite. Keyan also had a cup of hot chocolate, a bowl of ice-cream and 3 cups of Gatoraid.....he is a very happy boy.

We also had a surprise visitor today, Harley the therapy dog, he sat with Keyan for a while and Keyan loved it!



They are starting to talk with us about going home. We will have to see how tomorrow goes. We can't wait to get home!

Today is a great day!!

Keyan had a fantastic night!! He was doing so well that they are allowing him to have a liquid diet, his first meal, tomato soup. As you can see, he is very happy! The next step is to see if he can tolerate the liquid diet, and if so, they will move him to a semi solid diet and then to a regular diet. Once he is eating and pooping he will be able to go home! He will be going home with two drains from the bladder which will have to be cared for for about three weeks. I am being trained on how to drain and flush them. keyan's incision is also healing well, he has a scar that is about one foot long from his groin up the belly. He wants to know how many stitches he has, we will have to ask Dr. Mitchell. (he asked, over 100 stitches)
Keyan also went to school today,(Fairview would be proud) they have a classroom set up in the hospital with two teachers. Keyan read and painted a bird house, it was a nice change for him....and I was able to take a nap!
we will keep everyone posted.

Let the poop begin!

Last night (Sunday night) around 9:00pm Keyan pooped..... And the he pooped at 10:30, and at 12:00, 2:00, 3:00....you get the picture. This is really exciting because it means that Keyans bowels are starting to work, no obstruction! Keyan is feeling well enough to talk a bit and he is moving around better. If this progress continues they will pull the NG tube and maybe the epidural. It will be good for Keyan to have less tubes and wires. We counted them and found that he has 14 tubes and wires attached to him...crazy.
UPDATE
One of Keyan's doctors came in expressed concerns about a possible hernia so we had to have an x-Ray and ultrasound done along with some blood work to check his levels. They also talked to us about placing a PIC line to feed him nutrition. All of these happenings made us both upset. Soon after, we spoke with Dr. Mitchell, our surgeon, and he let us know that Keyan does not have a hernia and that the NG tube can come out.....within 5 minutes, the tube was out and Keyan was very very happy!!! We will be slowly introducing water to see if Keyan can tolerate it. The epidural was also pulled, yahoo!


Let' s hope that this is the start of something good and that Keyan continues to improve and heal.

Ng Tube

Keyan had a very rough night, he had extreme belly pain and vomiting. Because this is persisting to this extent they had to place an NG tube. This tube goes through the nose to the stomach and acts like a suction that suctions the contents and the gas of the stomach out. Keyan is very upset about the NG tube and his overall mood is very low. He wants to feel better but he just keeps getting worse.
The doctor came in and talked to us about the possibility of an obstruction in his bowel. They turned off his epidural to see how his body responds, if the pain gets worse and his stomach remains distended the may consider another surgery.
The kids and Kevin came to visit but Keyan was not really up to the visit. Like I said, Keyan's mood is very low, he is upset, angry and in pain. Let's all say a prayer for him.

Another step, in which direction...I don't know

Keyan certainly had a tough start to his day with vomiting and stomach pain.
Many doctors and medicines later he was able to walk which helps his bowels and gas. He picked up a bit when Mrs. Marten and Mrs. Thompson visited. Keyan was so happy with the many beautiful cards that his classmates made for him, thank you everyone!!! And many thanks for the wonderful books, cookies, gifts and especially for your thoughts and prayers.

One step forward, two steps back

Last night was a tough one, Keyan was up all night. Due to the type of surgery and it's length, Keyan has a tremendous amount of built up gas. He is unable to pass it because his bowels are not working yet and the pain is unbearable. They are going to give him a suppository and hopefully that will do the trick, if not, they will have to place a tube in his nose to his stomach to expel the gas.