12 August 2008

Miss Malia ~ An Update from this past week

Hello Everyone! I just wanted to post the latest update on Miss Malia. Her Mom had a chance to send out an update today, Monday August 11, 2008:

Well – it’s been a mighty hectic, tiring, and stressful week which is why there has been no update until now. HOLY COW has Malia’s body been through the ringer this week. Okay so, after having her NG tube placed things were going well. She was even showing interest in eating little nibbles here and there. She had been receiving 16 oz of formula (“Joey Snacks”) continuously while she slept at night and 16 oz throughout the day but through bolus feeds (not slow and continuous). We went in for her scheduled clinic visit on Monday and she had even gained back about half of what she had already lost which brought her back up to a little over 37 lbs! She received her next dose of Vincristine which is one of the chemo drugs. It’s a nasty little poison that is extremely constipating which is why we had her on a regimen of three different laxatives/stool softners. Well, unfortunately they hadn’t been working and starting early morning Tuesday things went downhill quickly.

It started when I gave her the first bolus feed on Tuesday. As soon as it was finished, it all came right back up with all the meds I had given her as well. We skipped the next scheduled bolus to give her tummy a rest and she seemed okay when I gave her another at about lunch time…until 40 minutes later when that came up. Then at night, when we gave her the third bolus (after anti nausea meds), that too didn’t stay down. So we called the Oncologist and he suggested giving her more tummy medicine, letting her rest until we started the continuous feed (since she had a good record with that), and see what happened. If she got sick in the middle of the night we would have to bring her in to the ER for fluids. She did well…YIPEE…until that afternoon. I hadn’t given her anything…not even meds to make sure everything stayed down. We were in the middle of getting her hair cut by my friend Michelle (another BizEMom) at the salon and sure enough, it happened…right in her wastebasket! Sorry Michelle. To make matters worse, her NG tube came up too so I had to pull it through her nose which she was not happy about. I knew then that we were going to have to take her in to the clinic.

When we got to the clinic, they gave her IV fluids which greatly improved her mood and color. They also placed another NG tube so we didn’t have to be the bad guys. We went home and she had her continuous feed at night again with the laxative in the formula because there was still no news in that area and we could not give her anything by mouth because it would come right back up. The next day, Thursday, we were just giving her the anti nausea meds, waiting 30 minutes and giving her a bolus of only 1 oz every 4 hours. She kept it down but by the evening her color was all gray again. The doctor said to give her the continuous again, and if she did okay, put her on a continuous during the day. The only thing was that we had to make sure we got her “poopie” meds in her as they felt that was the main culprit. So I slept with her that night and she did well. We woke up a little before 5:00 AM and I gave her some more tummy medicines and then about 40 minutes later she said she had to go to the bathroom J. Unfortunately, nothing in that area presented itself but, yep, you guessed it, she vomited about ½ of her night feed. Now we knew we had to go in again.

We went to the clinic and they had told us to pack a bag because she’d probably be admitted. We arrived at the clinic Friday morning, they gave her fluids and anti nausea medications, as well as more Miralax and when there was still no voiding, we were admitted. Oddly enough, as soon as we got to our room, she went big potty, but it was still not enough. By the next day, Saturday, the doctors said that she needed to be “cleaned out”. So it was not going to be a pleasant night because they were going to be giving her 4 liters of Go Lytely (the stuff you have to take before a colonoscopy). YIKES!! We had to put the NG tube back (since that too came up on Friday morning) and I had to be the one to do it L. I actually did a pretty good job (Malia had some anxiety meds before so that was a big help). They started the flushing process and they were right, it was not a fun day. Kyle stayed at the hospital that night so he got the worst of it. Sorry Honey!

Well I am happy to say that the “House of Malia” is clean! We were released from the hospital on Sunday evening after Malia had been on a very conservative continuous feed for about 6 hours and no vomiting. She now needs to be on that same very slow continuous feed to make sure that she’s able to handle it because tomorrow, she gets another dose of that Vincristine which could seize her up as quickly as that night so we need to be cautious because we do not want to put her through that flushing process with every round of chemo! So far so good, Malia is doing well with the exception of being totally and completely PO’ed that Joey is connected to her all the time now – she can’t just run around everywhere; which, now that she’s starting from scratch, she’s feeling very active.

Her hair looks adorable! Even though she would not let Michelle finish the haircut, it still looks so sweet on her. We keep getting compliments on how cute she looks. Thank you Michelle! Unfortunately, her hair is starting to come out now. By looking at her you can’t notice anything other than the texture and shine of her hair is not the same as it used to be. But, it’s all over her clothes, pillow, bed, toys, even us – so we’ll see what happens.

We’ll keep you all posted – and once again – we thank you all for your thoughts, prayers, support, love, and friendship.

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