Sunday, November 22, 2009

Update and a Bit of History

Hello Friends! I wanted to post a quick update from the last couple of days. Yumi ended up staying in the hospital for a couple extra days even though the surgeon was ready to release her Thursday night. I had not blogged it until now because I wasn't sure what the outcome would be and I was terribly worried and didn't want everyone else as worried and upset as I was. But now that it seems to be all over, I feel free to share what was going on with all of you.

Thursday when Leilanie was visiting around 4pm Yumi started exhibiting some strange behaviors. It started with her head just moving slowly to rest on her shoulder and just staying in that slumped position and she began to have a real strange glazed look in her eyes. It continued to progress into the evening and got worse, to the point where her arms were raising and her hands and fingers were contorting into strange positions. The weirdest thing was that she would just squeek out one or two words like "mommy, help". and when asked what she was doing, "i don't know." It was so strange and even when the nurse would come in and move her arms back down, she was pliable and they moved back down without any resistance. But when Yumi was asked to put her arm down, she could not. Nor could she bring her head back to position until she would use her hand to move her head. It was the weirdest, creepiest thing I have ever seen her do.

She would go through these spells and come out of it off and on. At one point Yumi got out of her bed and would, with one arm straight out behind her and the other shoulder up to her ear, she walked around in circles in front of the closed bathroom door. And even once she was in the bathroom and I heard a faint "mommy, help me..." and I opened the door and she was all slumped funny on the floor! The nurse contacted the doctor and we talked on the phone about what to make of this. He decided not to discharge her and keep her another night. In the meantime, he ordered a head CT and a consult with the neurologist. They wanted to rule out a seizure or stroke before they would just call it "conversion disorder". All of their "raise your left arm, raise your right arm" testing seemed to be okay, and with a clear head CT (she DOES have a brain!), they ordered a EEG to measure brain waves.


So all this stuff is so far out of my league I had the hardest time Thursday night and Friday. Anyways, the neurologist said that both test were normal, showing no signs of seizures or stroke, and that he has seen these types of symptoms as a reaction to a drug she was receiving to stimulate her bowel function, but only in patients who used this drug on a long term basis. Well, Yumi had only been on it for two days! So he put in an order to stop the drug (reglan) and she improved right away! This also was recorded in her permanent drug reactions record. Phew! What a stressful couple of days. She was discharged on Saturday around noon.

I had a good long chat with a friend about Yumi's life and "medical adventures" and the difficulties and blessings of it all. It was good to have that time to reflect on my thoughts and say them out loud again. I don't know if I can be eloquent about it and have this read as eloquent as I would like it to be, but I wanted to share with you all how this has processed through my mind and the blessings we have seen and continue to see through these various trials.

Ever since Yumi was born 5 weeks early, she has been a bundle of joy and medical excitement. She was jaundiced as a preemie and spent a full week at the hospital before we were able to take her home, and she couldn't even nurse for a full 5 weeks. How does a mother 1. try to nurse her new baby for a few minutes, 2. bottle feed for 30 minutes, and then 3. pump her milk for 20 minutes and freeze it for storage, an hour process, every 2 hours? It can only be through the grace and provision of God. Yumi started to nurse right around her due date and she had her first fully nursed meal at 5 weeks of age!

At the age of 2, and 10 months she had gone into the hospital for exploratory surgery as they thought she had a tumor on her ureter. While looking around for this tumor, they found that she actually had appendicitis and that it was about to burst. They removed it and during that process, it did indeed rupture. Since the oncologist had been called for this tumor, he was there and he (on a hunch) aspirated some bone marrow to examine after the surgery. They came in that night after surgery with the good news that it wasn't cancer.

The next morning the doctor came back in and reported to us that Yumi had cancer after all. It was a cancer of the blood, Leukemia, and that they would begin treatment with chemotherapy as soon as she recovered from her surgery. "Why did he have a hunch", you ask. Because Yumi presented with classic signs of infection (fever, pain), but did not have an elevated white cell count. So basically, since she did not have her white cells coming to her rescue, if her appendix had burst inside of her, she would not have had the immunity to fight off this infection = God's Provision #1.

A month later, while she was on chemo, she had massive abdominal pain and vomiting. It was like projectile vomiting. I took her into Urgent Care where they assumed it was the chemo making her sick, and they sent me home with some mylanta. I knew this was not chemo sickness since she never once got sick with chemo! =God's Provision #2. I took her straight to the hospital and insisted to the oncologist that this "was not normal for her". They admitted her and saw that perhaps she had a bowel obstruction of some sort and they decided to operate that night. They opened her up and much to their surprise found some adhesions that were obstructing her small intestines, but also found a section of her bowel that was twisted on itself and was gangrenous. They had to remove a foot long section of her small intestine. Again, since she was on chemotherapy, if they had waited until morning to operate, it would have perforated and she would not have been able to fight off the massive infection that would ensue in her body. =God's Provision #3.

(Wow, this is getting longer than I thought.)

Fast Forward 10 years: during the last 10 years Yumi has had some pain on occasion, but it would always seem to work itself out by morning. We thought perhaps it was allergies to dairy, lactose, peanut butter, etc. In March of 07 she had one that lasted over 12 hours, and into the next day. I decided to take her to the doctor. Long story short, she ended up with a bowel obstruction, her first of many for that year. 07 was a summer of 5 or 6 admissions to Children's Hospital in Seattle, and two operations to correct them. During these times in the hospital Yumi's spirit never got down. She was never "woe is me". Even though she has experienced more physical pain than I have ever experienced, even having had 3 children. She has been amazing. I was able to get a glimpse of how God has worked in the lives of others, and here is one example:

At one point during a stay at the hospital, the doctor had removed Yumi's NG Tube, hoping she was getting better. After it was removed Yumi was having a bit of pain with her next meal and he was considering putting the tube back in, which is a horrible and traumatic experience for her. I called Cornerstone and asked for prayer over this matter, and the teacher stopped class to spend 10 or 20 minutes of prayer on Yumi's behalf. Less than half an hour after the kids prayed for her, she started to feel better and the doctor changed his mind about replacing the NG Tube. =God's Provision #? (are you STILL counting?!)

I was able to attend the 8th grade graduation that year and one of the students spoke about how her faith was strengthened that day when she saw the Lord immediately answer their prayers for their classmate. What an honor to be a small part of His plan in the lives of these students! We may not be able to always know why we suffer, but occasionally, He lets us have a glimpse of how He is working out our suffering for the benefit of others, and ultimately, His glory. It is humbling to think that God would look upon Yumi and see her and her family and say "I will use this family to bless and grow my people, so that they can see ME".

So thanks for reading this post. I bring it to a close with the biggest lump in my throat and appreciation for all that God has done for us and also for the friends and extended family that pray unceasingly and have even provided meals for me and my family.

Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen. -Eph 3:20-21

Thursday, November 19, 2009

Props to Cat Man


Last night was a moving night. In that, Yumi's bowels moved. The enema and colace that the doc had prescribed seemed to do the trick. She is feeling better this morning despite the pain she had at 4 am. So when the doc came in at noon-fifteen he indicated that perhaps this was a constipation issue all along. With her medical history, they have to rule out bowel obstruction before they can really go full gangbusters trying to treat constipation because that could cause more pain and more problems.


She is going to be advanced to clear liquids. And she was able to pull her NG Tube out this morning. This is progress and he said if she is able to tolerate full liquids by this evening she can go home with strict instructions for plenty of hydration and a high-fiber diet. :)


I had plans to go home for a nap before I get Dani and Everett but I will postpone this in hopes that I can take her home tonight and sleep for hours on end tomorrow.


Thanks to the Lord for answered prayers and the specific request Yumi had to be out by Friday.


Wednesday, November 18, 2009

4 O'Clock News Report


So today we had the small bowel follow-through. Talking to the radiologist after this procedure, he was asking if there was any family history of IBS, crohns disease, etc. He indicated that while the contrast was going through, it was going through very slowly.


The doc just came in tonight and we had a talk about possible scenarios. He still does not have a clear indication that he needs to operate. Again, the problem with operating is that each time you operate you can cause more adhesions. So he is still inclined to wait this thing out. He also said that she still is looking quite consipated and the barium also is going to cause constipation so it's important to get the bowels moving and get that stuff out. He is going to clamp off the NG tube to see how her pain does and also start administering enemas and stool softeners to get stuff going. He said sometimes you just can't be sure what is going on. It could have been a partial obstruction when we came in that just worked itself out, or any number of possibilities. The bad thing about this type of problem is that we must go in to get the pain controlled even though there may be nothing medically that they can fix, except in the worst case, performing surgery.

Yumi enjoyed a visit from Beckie and Olivia. I'll try to be more on top of taking pics of visits!

Oh, and we did request that we be moved to Pediatrics. But the doc told me he thinks Peds is full of H1N1 kids. So yeah, we don't want to be up there! We've been blessed last night and today with good nurses, so I think we're good here. God is Good!

That's the latest, folks. You heard it here first. Thanks for tuning in! hee hee

Tuesday, November 17, 2009

Mom: 1 Surly Nurse: 0 Boooyah! (I shouldn't gloat, I know)

Today was a mixed bag. The doc said since there has been no change, either better or worse, he is going to order an upper GI, small bowel follow-through. It didn't happen today so most likely it will happen tomorrow. This could take a few hours. In the meantime, a dear friend came and took a shift and let me off early to pick up Dani and take a much-needed nap. Shortly after I left Yumi had a little toot. Which, in our world is a big and much celebrated event.

However, by the time I returned in the evening she was in a mess of hurt and the NG tube was not suctioning properly. Nick, the original nurse who inserted the tube was fiddling with it and flushing it, trying to get it cleared so that it would flow freely. If it does not flow and empty her stomach well, she starts to experience pain. So after watching him for a few minutes, I remembered the surly nurse from the day before who shoved her tube further down about 8 inches. So I told him that it probably can afford to be pulled out quite a bit. Perhaps that was causing the problem. So he started to pull it out and sure enough it started to suction. Score one for mom!

She is still putting out some pretty green stuff, so it is still a waiting game and we will see what the results are from the contrast study tomorrow. I'll keep ya posted. Thanks for your prayers.

Tuesday Morning - no, not the store behind Target!


Thanks to a friend bringing movies last night for Yumi, she stayed up really late last night and just finally got up around 11:30. The doctor also finally showed up about the same time so it was good she was up to answer his questions.

Her pain is low (like about a 4) and did not need her 9am dose of meds. While her pain is improving her bowels are still not moving and ... well yumi just indicated that her pain is now a 6 so she is asking for meds. So the doc ordered up a small bowel follow through (contrast study) and it will be done either today or tomorrow. It could be a 6-hour adventure or more depending how it goes. Last time she had this done it took days for the contrast to get to her colon because it was barely squeezing through.

She is well enough to start working on her homework so she doesn't get too behind. So now I have to be a mean, strict mommy. :( not fun. Having visitors is a good incentive to get busy on the homework.

Tonight I'll be leaving around 5:30 for an appointment at 6. Then I'll be back a little after 8. Unless she has surgery between now and Wed afternoon, I plan to go into work at 5:30. We'll see.

So that's the latest. Thanks for checking on us.

Monday, November 16, 2009

Day 3 of our adventure at St. Peter's Hospital

Well here we are again. Just to bring everyone up to speed, here is a rundown of the last few days.

Friday: Yumi came home from school with abdominal pain which started after lunch. Sometimes given a nap and time, she feels better and it passes. When it goes into the next morning is when I decide to take action. So we got up and dressed, went to the Group Health Urgent Care, got admitted, IVd with some pain meds and then admitted to St. Peters. I decided to stay in town due to the situation with our house and with Yumi being in high school, it is hard to catch up if you miss too much school. It took until 5pm to get the NG tube in with 2 tries. That's always the hardest part of these hospitalizations.

Saturday: The x-ray showed a good amount of stool in her colon so he ordered laxatives, suppositories and an enema. These were quite unpleasant. She was putting out a lot of saliva through the NG and so the liquids were clear. She had a lot of nausea and still struggled with a lot of pain through the day.

Sunday: Pretty much was just the same waiting game. The doc said that he was prepared to wait this thing out and proceed as we had been doing with laxatives and such. Sunday night her NG started to put out green gunky bial so it was apparent that things are not working quite right. It's strange that she continues to have pain. The x-ray still looks the same as well, not showing any significant blockages or expanded bowels.

Monday: I returned to the hospital and the doctor had cancelled the orders treating the constipation and is waiting this out as if it is a bowel obstruction. He mentioned he may order an Upper GI, small bowel follow-through in the morning. This is a procedure where they have her drink stuff and they take pictures every 20 minutes or so to watch what happens with the liquid, if there is a slow-down occuring and where it is happening. It was a rough day today with a surly nurse, and it was particularly rough for me. I usually can take these things in stride, but I was on the brink, I tell ya. So we are contemplating talking to the charge nurse to see if we can get moved to the pediatric floor. Right now we are on the regular surgical floor, where the youngest patient is in their 50s. No place for a 15-year old! But Yumi is not sure she wants to be moved, so we will wait and think about it some more.

I hope that brings everyone up to speed. Have a good night. I usually try to update once a day unless something significant happens. It's difficult for me to repeat the same happenings of the day to 5 or more people on the phone so if you can check the blog before you call, that would help my sanity tremendously. Thanks so much for your prayers!