Wednesday, March 24, 2010

Update via Aunt Sarah

Carah has asked me to update her blog nearly 100 times over the last week and I continued to forget. She just called me and said she would beat me up if I didn't get on and update. I am going to copy and paste her status updates from Facebook - so I hope you get enough details from them :)

Thursday, March 18 @ 11:47am
Back in the ER. Malakai had blood in his stool this morning. They're gonna get his vital signs, hoping and praying this is minor and he will not be admitted.

@ 2:59pm
His hemoglobin level is very low at 5. Blood transfusion soon and scope. Possible transfer to St Louis. Pray for him.

@ 5:58pm
Well, we are being admitted ;( At least one, if not two days. He's unable to eat or drink and is very unhappy. They will watch his levels and will then decide which route to take. They need to find the source of bleeding. Docs here at Riley and St Louis decided it was ok for him to stay here...

@ 10:09 pm
Has your heart ever hurt so badly for your child you feel like you just need to cry? My poor baby is miserable because he can't drink. He's asked for one a thousand times. I just wanna run out the door with him. Please pray they find some awnsers, soon. I hate hospitals !

March 19 @ 9:43am
Malakais hemoglobin continues to drop, even after his blood transfusion which suggests he is still bleeding. He is going into the OR in 20 minutes for an exploratory scope. Hopefully they locate the bleed and are able to stop it. He's resting peacefully at the moment, although last night was very rough. I actually slept in his crib for part of the night.

@ 11:42am
He is out of the scope. Unfortunately, they didn't see anything abnormal. He is going to get a PICC line inserted and the team here is calling St Louis to come up with a game plan. Probably staying here awhile unless something big happens. Waiting to go see my little mommas boy :)

@ 2:26pm
He's currently undergoing a test that tagged his red blood cells to see if they can find the bleed. This will only work if he is actively bleeding. He's sleeping, which he needs. They don't think this will show much but it was an easy test to rule out.

@ 10:50pm
Seriously, it's 10:48 pm and Malakai is cruising around his crib, watching tv, laughing and playing peek-a-boo. Are you sure this kid had three procedures today and bleeding internally? He sure is a trooper :)

March 20 @ 9:53pm
Malakai continues to be up and down with his hemoglobin and hematocrit levels. He had normal stools all day until tonight when there was blood again. My instincts tell me he will be air transfered to St Louis on Monday for further testing. I will go home tomorrow while Josh is here with him and shower and pack a bag. I... just want him better. I feel like we have yet to really see the REAL Malakai. A healthy Malakai. Please continue to pray...

March 21 @ 8:56pm
thankful for a break from the hospital. Daddy and Papa came up today and I was able to eat lunch with Makena, take a nap, shower, eat dinner and I'm now back with Malakai. Hoping tomorrow we have a game plan...

March 22 @ 4:13am
It's 4 am and Malakai is wide awake watching Mickey Mouse Clubhouse. I'm sure his routine will be hard to adjust when we go home. Oh, the joys of hospital stays...NOT!

March 23 @ 10:11am
His hemoglobin rose from 8.9 to 9.5. Liver numbers are a little high but it's because his Tacro (anti rejection medication) level has been low (common with illness) everything else looks good. They are cutting his iv meds again today. Chest X Ray because he sounds a little raspy but it's more procautionary. Looking at ...Thursday as a discharge day. Hoping his bloody stool doesn't come back with the decrease of his meds.

March 24 @ 11:40am
Ok. They're doing another procedure at 1:00, although he won't have to be sedated. This will look to see if he has an abnormality causing the bleeding. Long story, I'll fill you in later if it shows something. Still going to STL Friday so hoping to be discharged early tomorrow. Pulmonology is coming to listen to him a...nd they've sent off cultures from his nose. He's coughing and sounds crackley when he breathes. He's in isolation and may be transfered to a different floor because of the other transplant patients. Another day in the life of a transplant mom!

Wednesday, March 17, 2010

Latest and Greatest

Well, alot of time has passed since my last post. We were unsure if things were going to go our way, but they did and now we have moved into a beautiful new home! Last week was spent packing boxes and going through our old house. We hired movers and they arrived Friday morning at 10 am. The job was estimated to last eight hours and the poor guys were at our house until almost 1 am. Yup, 15 hours. I felt so bad for them. We fed them lunch and dinner, I'm not sure what they would've done if we hadn't fed them. I think they were planning to eat when they left. We have alot of very heavy furniture, that alone is why we hired movers. We had alot of help *Thanks everyone!!!* over the weekend and are getting close to being settled. I have been fighting a serious sinus infection so I haven't been as productive as I would've liked! This new house is seriously like a dream to me. There were so many things about our old house that I had learned to live with, but didn't like. We had well water. I didn't like doing laundry or showering with well water because it was so hard. And my washer/dryer were down in the basement, which was basically storage. I had to make sure both kids were occupied to do laundry. The closets were tiny. We didn't have a garage. I could go on and on. The new house, I have my own bathroom and walk in closet. I've literally taken a bath every night since we've been there. The first day there, the washer didn't stop. It was so nice to be able to do laundry while the kids played in the living room. I was only a few steps away. There is plenty of room, everything has a place. We have a very large garage and circle driveway. Makena enjoyed riding her bike yesterday (Looooove this warmer weather!) and I'm actually looking forward to cleaning my truck out tonight! I feel very blessed. Truly blessed. Exactly one year ago today, Malakai was being flown to St. Louis for the first time for his transplant evalutation. Amazing what one year and a healthy liver can do for a family :) Thankful everyday to our donor family!

Ok, what else? The week before, I took Malakai out to St Louis for allergy testing. He had been throwing up and had very loose stools for months. We thought maybe he was allergic to something he was eating so we got an appointment set up quicker than normal and headed out there. He was tested for common allergies and some things he eats alot, that may have been causing his symptoms. He tested negative for onion, tomato, garlic, peanuts...those are the things I was worried about. He did test sensative to dairy and eggs. The transplant team started him on a steroid, Prednisone, to see if that helps. So far, so good. I've tried to cut most of the dairy/egg out of his diet, although most of what he eats doesn't have any of that in it. He's a very picky eater and we're actually going to see a feeding therapist to see what they think. Hopefully they can give us some ideas on what to feed him and how to go about new ways to get him to try new foods. While we were out in St. Louis we stopped by the hospital and met a little guy named Jax. He is currently waiting on the perfect liver. Chatting with his momma put me right back about a year ago when I was the one waiting. The wait is torture. Wondering WHEN you were gonna recieve that call. Your mind plays these terrible games and you feel like you're going crazy. I hope and pray he gets it soon...

Recently, his belly has started getting bigger again and his veins are protruding alittle more than they were. The concern here is that his hepatic vein is narrowing again (stenosis is the term, not sure how to spell it) We are scheduled to go out to STL on March 26th for another venogram to expand that vein again. He had it done on January 22, and it really shouldnt need it again. But, his was more narrow than usual so I guess maybe he's just the not-so-usual case! We are also encouraged to try to get more protein into him. They've thrown out the idea of starting a feeding tube to ensure he's getting the right nutrients, so I'm gonna try what I can to get him to eat more balanced meals. I REALLY don't want a feeding tube back. I hated that thing. He hated that thing. Life is much easier without it. And he's much cuter without it :)

Makena is growing up way too fast. I know I hardly talk about her on here. She's a good little helper, loves to feel grown up. She actually helps do the dishes and likes to wipe the counters down. When she doesn't know what you're trying to say, she'll say "What'd you said?" It's cute! She LOVES dance class! She told her Nana she learned how to "shovel" trying to say shuffle. Nana said, "Next, you'll learn how to flap." And Makena said, "I already know how to flap!" and started flapping her arms like a bird. With your feet, dear. Not your arms :) I love that little girl to pieces.

Once we get internet back at home, I will try to post some new pictures. I know it's been forever! Thanks to everyone who thinks about Malakai and prays for his health. Keep it up, we will always need it :)

Tuesday, March 2, 2010

Sending my letter out today

I'm sending the letter to the donor family today. I'm nervous and excited. I hope to hear back from them, but I also realize there is a good possibility that I won't. I truly hope they know how much I deeply care for their family and how appreciative I am that they gave Malakai his life back. He is doing well from a liver stand point. His new liver is very happy and healthy. His numbers are stable and continue to be so. I will post the letter I wrote, but I haven't decided when. I want them to read it before I post it on here. I continue to pray for peace and comfort for them. I hope they're doing well.