Friday, February 5, 2010

Contrast Study and a Spelling Bee

Well, while I was being Spelling Bee Mom, Medical Dad took the place of Medical Mom and took Yumi in for her contrast study. Things did progress fairly slowly, and xrays did show today a lot of stool in the colon (indicating constipation). Which kinda makes sense by now with no BM since Monday... Yumi had to go most of the day without pain control as the narcotics tend to slow down the movement of the intestines. After the study was over they administered some more dilaudid and she was feeling much better for awhile. The left Group Health around 3 just in time to get Everett from school. The doc wanted Yumi to take some stool softeners so Medical Dad picked some up too.

Meanwhile, in Poulsbo...

We drove up this morning at 9 am and got to Poulsbo early for lunch. We arrived at Christ the King Christian Academy around noon for the Bee. Dani was in the class of 5th graders and there were 21 contestants. This was Dani's first Spelling Bee, and of course she was nervous. Unfortunately, her nervousness got the better of her and she spelled out in the first round on the word "dawdle". She, however, is none the worse for the wear and there is always next year. We are proud that she earned the opportunity to represent Cornerstone today!

Back in Olympia...

Medical Mom was back around 4pm and was able to get Yumi to the nail shop to get her nails done. They finished just in time to whisk her out to the church where the wedding rehearsal was. David and I got to have dinner out together, which included some browsing afterwards at Borders Bookstore! Yumi is currently with the bridal party in Tenino and will hopefully be home before she gets too wiped out and in pain.

What tomorrow holds...

Tomorrow morning, Hairdresser Mom will be at the wedding location at 9am, while Medical Dad takes Yumi in for some pain control and probably a follow-up xray. Hopefully we can time things right so she has enough time to get her hair done and get ready for the wedding which is at 2pm. Tomorrow at 6pm is also the first time our new small group is getting together for a taco feed. It's certainly going to be a long day.

Thankfully Everett got invited to a sleepover and is secured through most of the day tomorrow. Please pray that all goes well and that Yumi is comfortable throughout the day. She's a good sport but Medical Mom worries. Thanks for your prayers!

Thursday, February 4, 2010

Day 2 - The Adventure Continues

Today was good and went just like planned. We went to Group Health at 2 and she got hooked up. Her IV was still good, PTL, so they didn't have to put in a new one! yay! She felt better pretty much right away, and also went and got another xray, which pretty much looked the same as yesterday.

She's got good bowel tones coming from her belly, so they are moving. What is causing all this pain? The theories are : possible partial constriction of the small intestine, or dehydration causing the small intestine to spasm. Well, she is well hydrated now, so perhaps there is a slowdown in her small bowel.

Our doc, Dr. Brown, will be gone all weekend so has written up orders for a barium study. "Faithful readers" (haha) of this blog will remember this procedure. Upper GI, small bowel follow-through is another long term for this study. She drinks this barium stuff and they take one xray after another to watch the contrast pass through her bowel and see where, if at all, the slowdown is occurring. Once, a couple years ago, it took a few DAYS for the contrast to make it to her colon!

Anyways, hopefully they can do this and get her pain controlled before around 5 pm since she has the wedding rehearsal at 6. I will be out of town for a spelling bee with Dani in Poulsbo for most of the day. So dad is the medic for the day.

Fun stuff - not.

Wednesday, February 3, 2010

Feb 3, 2010

Here's the story so far. Last night Yumi came home around 8 and she had been slowly starting to have some pain. It gradually started getting worse and worse, until she was pretty much in "the zone", in the fetal position on the floor. We decided to wait it out, being that the last few episodes had not required surgery and we figured we had some time. So later at night I gave her some Tylenol PM to help her sleep and hopefully she'd get some rest during the night. I got up around 2:30 am and she was awake but I think she had been dozing in and out all night, still in a lot of pain.

In the morning she was the same and we waited it out as long as possible. She still was not vomiting, however, which is a pretty good indication of a blockage. The pain was unbearable for her and we went in to Group Health at 2pm. We saw her regular pediatrician, who also happened to be the original doc that first diagnosed her leukemia 12 years ago. I explained that, if at all possible, we'd like to avoid a hospitalization since Yumi is a bridesmaid in a wedding this Saturday. If she got admitted, she's pretty much guaranteed 5-7 days of her life wasted.

So after labs results, urine, and xray all came back negative, the doc said let's give her some Dilautid and see how she does. She also got Zofran for nausea. It took right away and she was sitting up normal in no time. It's a temporary band-aid fix, and we may have to go back in tomorrow for the same thing. But as long as the xray continues to show normal non-dilated bowel, we can continue to go daily for a pain fix until the wedding. So glad the doc is willing to work with me for this scheduling situation (momentus occasion).

It started to wear off around 8 pm, and I expect it to continue to taper off. Of course, I would like otherwise! I would like that whatever is going on will just go away and not come back. So please pray accordingly; as always, we covet and appreciate your prayers very much.

Oh, as for myself, I had a little personal breakdown moment this morning but after I got into "MOM"-mode, I was fine. Having a chronically ill child is exhausting at times, but it only feels that way on occasion. I thank the Lord for sustaining me these many years. God is good!

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.