Wednesday, February 24, 2010

"I did it"

"I did it" is Malakai's first phrase. He usually only says one word. His vocabulary is definitely expanding and just a few days ago he started saying "I did it" when he did something he was proud of. Throwing a ball into a basket, standing on his own for a few seconds, etc. It is very sweet :) He started physical therapy last week and during his session, he would say "I did it" before he did anything. His therapist would say "No, you didn't do it yet" and he'd say "I did it" It was cute! He's now saying "My Mama" and pointing to me. His favorite word is still ball :)

Malakai ran a fever a few days ago. It got up to 102.4, I gave him Tylenol and it broke pretty quickly. He's had a alittle bit of a cough but seems fine. Makena is sick today. She woke up around 3 am coughing, kind of barky coughing. She came into the bed with us and I could tell she had a fever. When she got up this morning I gave her some Tylenol Cough and Cold and she seemed to be better. She's played and acted normal until about an hour ago. Her temp is elevated again and she's laying on the couch watching tv. Hopefully it passes quickly. I hate when they're sick.

Some big things could be in store for our family in the near future...we're not pregnant, LOL, but stay tuned for possible big news :)

Sunday, February 14, 2010

Ashley's Gift: A Liver for LuLu

I've been following a little princess, LuLu, and her journey to transplant. Their local newspaper did an article featuring both her and her donor angel, Ashley. It's a very touching story, and very emotional to read. It made it seem more real that Malakai actually recieved a portion of someones liver, and that little girl had a family. I have a letter written and I will be sending it soon. Anyways, take a look at it. The story seems like something out of a movie.

Saturday, February 13, 2010

Some new pics...

Malakai's 1st time in the snow He was OVER it! Get me outta these clothes!Makena actually sat still long enough for me to curl her didn't stay this pretty for more than a few hours
Lookin' sharp after his very 1st haircut

Thursday, February 11, 2010

Obstruction or No Obstructon...

That is the question...

Malakai wasn't allowed to drink anything past 10:45 am this morning and we were to be at the hospital at 12:45, procedure was supposed to be at 1:45. We got into our room around 1:00 and were seen by the nurse, anestisologist and then the GI doc came in. We'd never met her (or if we had, I don't remember) and she was the one supposed to do his scopes. Josh asked her if she knew why she was performing the procedure and we could tell immediately that she wasn't sure. Bottom line, she wasn't aware that he was on aspirin, and being on aspirin makes you at higher risk for bleeding. So we waited until she spoke with his doctor and another GI doc. We were given the decision, go ahead with the scope and know that he is at a higher risk to bleed, or wait until tomorrow...which would mean admitting him overnight and doing the scopes tomorrow. I didn't want to wait. He'd already been without food and being in the hospital RUINS him! So we decided, along with the doc, to go ahead.

He had fallen asleep on me at this time, it was 2:45. So I took him straight into the procedure room and was able to be with him until he was asleep. He was given gas through a breathing mask so he would be out before they put in his IV. We were told it would be about 1 1/2 hours and were given a pager. We went to the cafeteria for lunch and within an hour we were being paged over the overhead speakers. We went to the APC where his procedure was done and told them we were being paged. He had already come out and we were met by a doctor whom we'd never met. He told us that Dr. Weymann wanted to speak with us to "let us know what the next step was" My heart sank. I thought for sure something was wrong, 1.) because he was only back less than an hour. I thought maybe they found something definitive and stopped because of that 2.) they were paging our doc to come talk to us.

The doc came in and said his upper scope went well. The tissue in his esophagus looked good and that his stomach was a little red which can be nothing, but can also mean inflamation. The lower scope was a little more difficult. She said she was able to go in 70 cm and then the scope wouldn't go any further. I thought this meant blockage. So he was sent to Radiology and given an enema barium test. Basically they inserted a tube into his bottom and shot barium fluid into his rectum to watch how the fluid passed through his body. Thank God, this went well. It was TERRIBLE to watch him lay there helpless. He'd just come out of anestetic and now he was being forced to lay in different positions with a tube up his heiny. Poor little guy.

After speaking with the doc, we decided to stay in St Louis one more night. It was already 5:30 pm and we figured it was in his best interest to stick around. They want us to call in the morning to check on him before we leave for home.

He's sleeping and doing well. He wasn't as excited to eat as I expected. He ate a little bit of mashed potatoes and chicken, and a little banana babyfood. He's basically wanted to drink his apple juice. I'm trying to wean him from breastfeeding and right now he's doing well. I hope tomorrow is as successful as today :)

I can't wait to get home and give Makena a big squeeze. I miss her so much while I'm gone. We Skyped the other night and it was really good to see her. She loves her Nana and Papa, but I know she misses us too. She doesn't quite understand why we are all in St. Louis at the hospital and she's not here. She thinks the hospital and St. Louis are fun, thankfully it's a happy place for her :) but sad that she wants to be here and can't. I know it will change as she gets older, I just hope we're not here very often!

Thanks again for praying for us!!!

Wednesday, February 10, 2010

No bowel obstruction...

Well, I updated last on my iPhone and for whatever reason, I couldn't write anything other than in the Title. So that is why it only had a brief note.

I took Malakai to our pediatrician office on Monday morning and he was concerned because Malakai's belly was enlarged (I took him in because of this and he has been throwing up on and off for about a month now) We were sent over to the hospital for an X-ray. The radiologist called the pedi and said he thought there was an obstruction. We were told to head to Riley because Malakai needed to see a surgeon that day. I called to his transplant team in St. Louis and they were (as always) on the ball and we were able to avoid going to Riley.

We came in on Monday night and stayed in a hotel. He had an obstructive series and bloodwork done first thing. During the ob. series, he had to drink a terrible barium solution and they watched it going through. He had x-rays done every 30 minutes to show where it was going. This came back positive, as in NO OBSTRUCTION! Thank God. The radiologist back at home was not used to seeing a pediatric liver transplant patient. That being said, Malakai's anatomy is different than other children. All of his intestine are kind of squished in and that is why the radiologist thought there was a blockage.

The bloodwork, however, turned out his hemoglobin level was very, very low. We've known he is anemic for awhile now and he's on an iron supplement. It just hasn't been enough so he was given a blood transfusion while we were there. It was crazy how pale he was, and I didn't really notice HOW pale he was until about an hour into the blood transfusion, his cheeks started turning pink. I mean, he looked like he had been outside on a summer day playing in the heat! They were that pink! He has felt so much better since getting that boost. The nurse said he was getting "a pep in his step and pink in his cheeks" and boy was she right!

We are currently still in St. Louis. He will be getting an upper and lower scope done tomorrow to check for the source of his vomitting and hopefully getting some awnsers. Because of the tests, he hasn't been able to eat anything solid today...only apple juice, Sprite, chicken broth and jello. He's done GREAT! I couldn't have asked any more from him! He hasn't napped, it's 8:45pm and he's still going. That extra blood really helped him out yesterday!! So if you're looking for a reason to donate blood, let that be it!

Let's hope tonight goes well. He's used to nursing himself to sleep and if he wakes up, he usually nurses back to sleep. So tonight should be interesting so say the least! I'm thinking we may be weaning him all together, it seems to be interfering with his appetite and this may be a good time, seeing as though he's going to have to go a full 2 days without it. Wish me luck, I'm gonna need it!

We won't know any more from the scopes for about a week. They're going to take samples from his colon, esophagous (totally didn't spell that right) and other organs. They'll test him for infections, look for ulcers, etc. I hope they can find a reason to his vomitting and he'll be able to move on from here. I am sick of him being sick. He deserves to feel good!

Once I get home, I'm going to try to put some new pictures. I realize it's been awhile and I have taken about 500 pictures since the last time I put any on here. Just know that he looks amazing and is getting SO big!

Thanks for praying for us and thinking of Malakai. He's a true miracle and I am blessed beyond measure!