Malakai was born Sep 24, 2008. At four weeks old, multiple tests determined he had a rare liver disease called Biliary Atresia. BA is when the bile duct between the liver and the small intestine is blocked or absent. He had his first surgery Nov 6 to temporarily fix the problem. During a five week hospital stay for ascites, Malakai was put on the transplant list on Mar 20. He recieved his "Gift of Life" May 12, 2009 at Children's Hospital in St. Louis.
Congrats Sarah and Dan...I can't wait to meet your new little guy. Jack Owen Bradley was born earlier this afternoon, weighing in at a whopping 8 pounds 7.5 ounces and 21.5 inches long....and he was 3 1/2 weeks earlier! That's a BIG baby. Love you guys!!!
Here are some pictures we took this morning when we went out to the garden.
The turtle she named "Pokie"
She has slipped one time, got her foot wet and didn't like it very much! She's much more careful now :)
The loves of my life :)
Josh took Makena to the apartment for a nap so I decided to take Malakai out to the garden to get some fresh air. We were sitting there, enjoying the beautiful weather and I see Malakai staring behind me. So I look and there was a man talking to him. This is what he was saying, "Look at you, you little flirt. You're so pretty!" So then a few minutes later he walks up to me and says "You've got one pretty princess" I almost laughed. I've never thought he looked like a girl! I said, "He's a boy..." LOL I felt bad that I hadn't corrected him before...oops! He was in a shirt that said "Mr. Popular," had blue socks and a blue blanket. LOL
Not much to add today, he's doing great! He did poop on me once though...Love being a mom :)
Eating the other day...still not too thrilled with eating real food...
Checking out the card from the Sibling Playroom...
They came and pulled his chest tube this morning. He didn't drain much last night and they decided he didn't need it anymore. They warned us it may have to go back, but he's doing great. I don't think it will come to that! They will do another x ray tomorrow morning to check his lungs, but hopefully it will show clear lungs and no fluid! He is so much happier now and can breathe alot better. We will be here through Wednesday so he can finish his antibiotics and we will be able to go home to our apartment.
And...Sarah (my twin sister) is having baby Jack! She called me at 4 am and told me her water broke and they were heading to the hospital. He'll be considered premature because he'll be born before 37 weeks (she would've been on Tuesday) We can't wait to welcome him into our family! Our family has had alot this month...Rita (my older sister) had her baby, Addison and Malakai had his transplant on the 12th and Sarah's going to have Jack today! How wonderful :)
I took some pictures of the kiddos today in the garden. Great place to take pics. I will upload them as soon as I find my camera cord. We moved rooms (Yes, this is room #5 for us!) and I cant seem to find it! Check back soon!
Malakai had a good day today! His X ray from this morning showed clear lungs...Praise the Lord! He has been put on the nasty formula, called Portegen, that is supposed to be the best for the milky discharge, which now has a name :) It's called chylous ascites. Still don't fully understand it. I even Googled it, still confused! The CT Surgery team wanted him to be solely on the Portegen formula, no breastfeeding. The liver team had a different opinion. So they're going to give him the weekend to see what he does. The CT team thinks his ascites won't dry up if he's continuing to get milk. But he LOVES to breastfeed, and to take away the one thing he loves....the liver team said they weren't ready to do that yet. (Thanks guys!)
We took Malakai and Makena out to the garden today. It was beautiful. The sun was setting, it was warm still, but the air was cool. Just perfect. I think he loves being outside. It was a little difficult getting him out there with his chest tube and his IV pole, but worth it. He just looked around and coo'ed. I am so amazed by him. He's such a strong little guy!
Rita and Brent are coming out this weekend. I get to meet my new little niece, Addison! She was born the day Malakai had his surgery. I can't wait to meet her!!!! Hopefully we can spend some quailty time together and it won't be too crazy with all the kids!
We found out today that the little boy I mentioned last night didn't make it. My heart aches for his family. His name was Elijah. Please keep his family in your prayers. I pray that God blankets them in peace. Rest in peace, little Elijah! I am just reminded how thankful I am for my babies. It was a rough road getting pregnant and I feel so blessed to have my two kids. Even after all that Malakai has gone through in his life, I am just so lucky to be his mom! Parents, hug your kids a little tighter tonight!
Well, there seems to be NO INFECTION. At least they couldn't find it. So that's good news! The not so good news, they had to put a drain tube in his chest. He had a moderate amount of fluid. They put the drain in and he's breathing much easier now. The fluid coming out of his chest isn't exactly what they thought it would be. It's sort of milky, and they said it's from having too much fat (from milk) in his diet that he's not processing. I think. His doctor tried explaining it to me three times and it still didn't sink in. I will probably understand it better tomorrow when they decide what to do. They said to do exactly what we've been doing tonight with breastfeeding and continuous feeds on the pump and see if it's still cloudy in the morning. The formula they would have to put him on is a low calorie and he needs all the calories he can get right now! So we wait. He'll have another chest x ray tomorrow to check everything. And then hopefully after he's finished his antibiotics Sunday, he'll be discharged on Monday!
Josh talked with a dad tonight who is here with his 2 1/2 year old son who is waiting for a new heart. He's not doing very well, and had to be resuscitated three times last night. They had put a "do not resuscitate" status on him today. Josh met their entire family and prayed with him. I think he was glad to be of encouragement to him in this horrific time. After praying with him and meeting their family and the little boy, he called Josh and said they removed the DNR status. Please pray for this family. I don't know the little boys name, only the dad's name is Shane from Kansas. I can only imagine what they are going through right now.
I also ran into the little baby girl who is waiting on a liver, with the same nasty disease that Malakai had. She's 6 months old and soooo cute. Please pray she gets her new liver very soon. She's here at Children's until her transplant. They sent her home but she had to come back because she had fluid on her lungs! Her mom seemed very worn-out...I totally feel for her. Pray for God's grace to cover her as well! Her name is Shawnteona. (I think that's how you spell it!)
So today was very long, Malakai has been sleeping since coming up from recovery. I don't like when he's been put under anesthetic. Although he's seems to be more comfortable...I'm grateful for that. Hopefully he sleeps well tonight. We have visitors coming this weekend. It will be good to see some familiar faces and get a break from the same stuff, different day routine.
I can't wait to wrap my little boy in my arms and walk out of the hospital! I can't wait for life to settle down and become normal. Thank you to everyone who's helped us out and donated. We really, really appriciate it! Keep praying he stays strong and continues to heal beautifully.
So the CT scan is now going to include a chest scan. His O2 level dropped last night to 88 and they saw some fluid around his lung. So they're going to scan his chest while they look for the infection. He is most likely get a chest tube to drain out the fluid. Basically the fluid is ascites that has traveled up from his belly. She also said it looks like he has a little pnuemonia. But they won't treat that any differently. He's got enough coverage with the antibiotics and once the fluid is gone, his lung will recover. They're going to give him another blood transfusion later this afternoon because his red blood count was a little low. She said it most likely is due to the amount of blood they've been taking. Big picture, he looks great. His liver is working perfectly and there are no concerns on that end. Once his nutrition picks up some and we get rid of the ascites, he should take off! They're still saying we'll probably go home on Monday, I sure hope so. I think he'll do so much better. When you're here, the nurses come in for vitals at 12:00, 4, 6 and 8 am. Then they draw blood at 6 and weigh him. I seriously don't know why they have to strip a baby down to a diaper at 6 in the morning to weigh him. That bugs me! Let him sleep!! So I think once we're home he will have a better shot at recovering. Continue to pray for all of us. Pray that his CT scan goes well and best case scenario, he gets the tube, drains the fluid, and we never have another problem.
He's scheduled for a CT scan tomorrow at 2, which means no food after 6 am! It will probably be a long day! He normally does OK without food, but that was pre-transplant. Hopefully he'll do just as well. The docs said that if they do find something on the scan, he'll go in Friday to have the fluid drained. If not, then he'll just finish the antibiotics and we'll go home. Monday is our discharge day, and it couldn't come soon enough. We took both of the kids to the playroom this afternoon, and it was so nice to get out of his room. There's a really nice garden on the roof of the 8th floor where we can take him. That's nice to get fresh air! It's beautiful and peaceful. I think he enjoys it, too!
Well, tonight is my first night at the hospital alone! Josh took Makena back to the apartment because she woke up at 6 am and didn't have a nap. We figured it would be a looooong night if she didn't get a good nights sleep. Hopefully she's refreshed and ready to go in the morning!
We have a new website coming soon! I will put up the address as soon as it's ready!! It's more of a donation website to help with the absolutly overwhelming bills and expenses we have right now.
Continue to pray for strength for all of us! God bless all that are praying for our little guy!
So the surgeons/transplant team wants to keep him here another week to finish his antibiotics. They said they're going to schedule a CT Scan for Friday to check for any pockets of fluid that could be causing his fevers on Friday/Saturday and his cultures to grow. They've said it could be nothing, or it could have come from a number of places. They don't believe it's an infection in his Central Line though. The reason they've waited to go searching for an exact location of the bug is so that he could fight it with the antibiotics and be strong enough to get rid of it. She said there's a possibility of having to be put under anesthetic and have a drain tube put in. It's all very confusing, I had a very hard time understanding/comprehending all that she was telling me. Bottom line, we'll be here until at least Monday and a CT scan is going to be done on Friday. What we don't want to happen is have the antibiotics kill off the bug, then come back because it wasn't treated right.
I just feel like the wind has been taken out of my sail! I thought we'd be home by now and we've been told another week! The most important thing is that we're in the right place and they're able to treat him. I'm so thankful for him and his recovery! Please say a prayer for us, it's getting harder by the day!
I feel like I don't talk about Makena as much as I should. She has done so well with adjusting and adapting to our "new life." I couldn't be more proud of her. She has sooo much energy, and thankfully they have kind of a daycare type setting for her to let some of it out. During their breaks, she comes up to his room and eats lunch/dinner, then goes back. She loves it in there and they all love her. Yesterday, being Memorial Day, they weren't open during one of their normal sessions, and Makena went to the nurse's station and "helped" then for about an hour. She just loves having the attention on her. She's been sleeping here as well, which I wouldn't have ever thought would have even been a possibility. But she goes right down (later than normal, but what can you expect?) and sleeps til about 8! Her little personality is just blossoming and I love watching her grow! I dream about taking her to Disney (somewhere I've never been) and the beach, and amusement parks, and just watching her experience new things. I love that she's learned so much from me already, and I can't wait to teach her more! I think that's the best part about being a Mom :)
His cultures are NEGATIVE!! They will continue to run his three antibiotics because they're 10 day courses, but she mentioned possibly letting us go home and run them ourselves. We'll be here a few more days I'm sure, just to watch him. But I'm hopeful by the end of the week we'll be home (well, St. Louis home). We've stopped his bolus feeds during the day, so he's just breastfeeding and eating table foods. I truly believe we are on our way to being tube-less!!! He's been steady around 5.8 kg ( 12 1/2 lbs) for the last 3 days.
I decided to put some new pictures up for your viewing pleasure. He's really starting to look great! We can SEE the difference just a pound or two can make on such a tiny body!
This is seriously what we ordered him from the "Dining On Call" This was HIS food...LOL We weren't sure what he would eat so we got a variety...his favorite? The spaghetti and mashed potatoes!
A pic of him after eating...Mommy hadn't cleaned him up yet! Love those sparkly eyes and sweet smile!!
Love this one!
He loves to play with styrofoam cups! I'm not sure why...not just any cup will do! And his mohawk was back!! Hopefully after he's not laying on his back so much I can keep it that way! I love his little mohawk!
Our lovely accomodations...Makena sleeps in one, Josh in the other, and Malakai and I share his hospital bed. Comfortable? Not in the least!
The surgeon just came in and said his cultures from yesterday were still positive. He said this was "strange." He said normally at this point they start to show up negative. They're going to give it until tomorrow and if it still shows up positive they're going to have to decide what path they're going to go down. He said the good thing is, he's not acting sick...he's eating great which is a good sign. The doc also said they're going to test him for c-diff because he's had a lot of runny poops. Please continue to pray that he fights this infection and we get over this bump soon!
Malakai slept so well last night! He woke up alot, but went back to sleep quickly and slept til 10:30 am! He's been itching where his incision is...I can only imagine how much it must itch. The surgeon came into and said his cultures came back with a particular bug...I'm not even going to pretend I know how to spell it. But it's a good thing we know what it is now, they can treat it accordingly. He's on three different antibiotics now, and they're probably going to stop one of them tomorrow. He had a blood transfusion yesterday and his hemoglobin level was normal today, so that's good. He has been acting a lot better today...this morning they came in to flush his NG (feeding) tube and it wouldn't let anything in...they left it alone and tried again a few minutes later, still nothing. So they waited a few hours and it still wouldn't allow anything to go in so we had to take it out. She then tried to push some fluid through it after it was out and still nothing. So it was blocked, which is strange because he hasn't had anything go through it other than formula. So today he has been tube free! We decided to see how he did without the bolus feeds. He's nursed about every 2 hours and ate table food really well. He had spaghetti, mashed potatoes, and applesauce with chocolate pudding. He'll be put back on the tube tonight for the continuous feeds...Hopefully we'll still get to go home on Tuesday. I haven't asked because I'm not sure I really want to hear the awnser! Praying we go home soon, it's really starting to get to me...being here in the hospital and all. I'm sick of it! I wanna be home with Makena and feel normal again! But then I step back, look at the big picture, and thank God that we are where we are!
He spiked again this morning...exact same time, exact same way. He started to tremble and whine...like an "I don't feel good" whine. Then he started to get a little warm and within 15 minutes his fever was higher than 102. Tylenol helped bring it down. His blood cultures came back positive, meaning they've found infection somewhere...Most probable, and really best case scenario is it's in his central line and IV antibiotics will treat it. He's on three different antibiotics right now and they've stopped one of his anti-rejections meds for a few days. He's not been sleeping well, still, and they said that can be from his meds. Hopefully over time that will go away, once his body is adjusted to the medications. His hemoglobin level was low, 6.8, so they're going to give him a blood transfusion this afternoon. Just a bump in the road, but he's still full speed ahead in my book. I look forward to when all of this is just a distant memory. I'm beginning to feel exhausted!
Well, I knew this could happen...just hoped it wouldn't. Malakai had a really long night last night. He cried for over 2 hours and woke up early this morning crying again. Then he started to tremble a little bit and I felt his head and he was warm. Over the next hour, his temp went from 100.6 to 102.9. His heartrate was 216 and he was breathing really fast. So they took some blood for cultures and started an IV. So we're here until Tuesday, because Monday is Memorial Day. Bummer. Oh well. I'm glad we didn't go home and have to come right back. It will be really tough though being here with just Josh and I. We've had help the entire time until tonight. Mom is supposed to come tomorrow and stay through Sunday, but then we'll be alone all next week. A couple of friends had talked about coming the following weekend and then Rita and Brent (my sister and brother-in-law) are coming on the 1st. It'll be at least until tomorrow before we hear anything about his cultures, hopefully they show nothing and they'll tinker with his meds some and hopefully by Tuesday he'll be ready to go! Say a prayer for him...his fever went down after a few hours and he's back to smiling and eating again. He's a tough little guy, that's for sure!
We just got the news that he will most likely get to go home tomorrow! Michelle, the nurse practitioner hasn't yet talked to the surgeons to OK discharging him tomorrow. She said from a liver standpoint he doesn't need to be here. She said if they're not ready to send him home tomorrow, that they'll get it all ready for discharge Saturday. So it looks like we'll only be spending one or two more nights here!!! They've started the bolus feeds today and if he does OK with them, there's no reason he needs to stay! He had a little issue last night with leaking from one of his drainage tube sites. He lost alot of fluid. But they've patched him up and he's good to go! His weight is now 4.93 kg which is about 10.8 pounds. That was his weight in December. He was 5.39 kg on Wednesday, so he lost about a pound of fluid overnight! We will be staying in St. Louis for a few weeks...we have our apartment until the first week of June. So we will be here until then. I am so excited that my little boy is doing so well! PRAISE GOD!!!!! He's really starting to act like himself. I can't wait to see him GROW! It's amazing the changes I have seen already, and I am sooo ready to see him be a baby. He's not really had a real chance at life yet. I am so thanksful for his progress!
Today has been a great day...We moved last night into a very quiet room. The only thing I can even complain about is that it's too cold! He slept much better last night. The liver team decided to increase his feeds through the night to 20 ml/hour and I think he was more satisfied. Maybe that's why he's been so cranky...because he's hungry. They're going to start giving him bowlis feeds, meaning 2 ounces at a time, rather than dripped over an hour. The thought there is to get him into the hungry, full, hungry, full cycle. I hope it works.
I met a mom last night, as I was leaving to take Makena home, with a little girl with Biliary Atresia that is waiting for a transplant. It's weird...it's almost exciting to meet someone who has a child with similar circumstances. It makes you feel connected, like they know what you're going through. She was 6 months old, completely adorable, and had the same personality as Malakai. Very mellow and laid back. And her legs were crossed...Malakai's legs are always crossed. Anyways, I've always been on her end. The parent with the child before transplant facing the absolute unknown. I pray this little girl gets her Gift of Life very soon.
Sarah, Jessica and I took the girls to the zoo today. That was nice to get out of the hospital for a little while. Made me feel human again. They had so much fun. I'm glad we went.
The surgeons said we are going on the right track and we're probably going to be heading home soon. He really just needs to get his nutrition back on track. All of his levels were "Perfect"! Can you believe it?? PERFECT!! He has never had perfect levels. And something I realized the other day was he no longer has Biliary Atresia. When he got a new liver, his BA went away. Amazing. I am just so amazed with the work God has done in his short life. Everything has happened just right for him to make such great progress. And the fact that he was so sick and I was given such grace that I didn't even see him as sick! I just look forward to loving my healthy, beautiful little boy. I have such respect for parents with sick kiddos. I realize there are much worse situations. I have learned a whole new outlook on life. For that I am so grateful! I want to plan a HUGE first birthday celebration...complete with a bouncy house and miniature ponies! LOL If you think I'm kidding, I'm not. I want everyone who's prayed for Malakai to be there. Everyone! I think it's important for everyone to see how great he looks and celebrate such a huge milestone with us!
Ok, I am rambling now. Off for tonight. He's doing wonderful. He's starting to smile and play with toys. He's really starting to look like little Malakai again! Thanks for keeping us in your prayers!
Another long night with Malakai, but thankfully after a shower I am feeling much better. I don't know what's up with him. I'm not sure what's bothering him, but he doesn't fuss..ever. So I know something has to be upsetting him. He has another tooth coming in, I think that may have something to do with it. And he's probably hungry. He's not eating super well...hopefully as he gets to feeling better his appetite will pick up. They've talked about moving us down the hall to a more quiet room. I hope it helps him sleep better.
Sarah, Emma and Jessica are headed this way this afternoon. It will be good to see them. Sarah is due in a month, so this will be the last time she is able to travel out here. I am really hoping to make it home before Jack is born. I missed Addison's arrival (Rita's little girl). She was born the day of the transplant. What a day, huh?
I am heading to bed, hoping for a good night of sleep...or at least better than the last two nights have been. Michelle, our transplant nurse practitioner came in today and told us that as soon as Malakai smiles, she'll sign our discharge paperwork! LOL Everyone knows how smiley he is and so they know he'll be feeling well enough to go home when he smiles! She said "You have to smile at ME, not mommy and daddy and I will send you home!" Now home means St Louis, not Indiana. But I can't wait!!! Hoping in less than a week we will all be together. Keep praying for us!
When I'm having a hard time or Malakai is really fussy (like right now) I just look at this pic and it makes me smile! This was taken the night before we got the call. Still smiling and having a good time!
He is doing so well! They haven't technically talked discharge, we're certainly not ready. But they have said he is totally going in the right direction! I asked what he needed to be discharged and he has to have no fever (hasn't had one at all) eating well, and labs stable. His labs continue to get better each day. He's not eating as well today as he did yesterday. He wants to breastfeed alot, but my supply is so low. He actually drank formula out of a little medicine cup earlier. He just does not like the bottle!
Last night was a terrible night of sleep for everyone. He woke up wimpering/fussing every hour! I'm not sure if he was in pain, hungry, irritable, uncomfortable...I'm not sure. But he didn't want to take a bottle. He was given pain medicine about every 2-3 hours. His incision opened a little last night and bled. So the nurse put more of the surgical glue on it. So I'm sure that was affecting him some. They pulled his last drain yesterday and he's a little swollen. The surgeon said he wanted to go ahead and pull it even though he was leaking a ton so he wouldn't "dry up." So now it's just staying in his body. He's continually getting Albumin, which is supposed to help pull fluid out of his body and put it into his vascular system so he'll eventually pee it out.
Makena just fell asleep in the bed with him. It has to be one of the sweetest "Kodak" moments I've seen in awhile. She has so much energy, she never just falls asleep. So to get a picture of the two of them together is something special. He is now sleeping with her, but the pictures I got...he is awake. Here it is...Sweet huh?
A lot has happened in the last few days, it's incredible. He lost another drainage tube today, his last one! Watching the surgeon pull it out (he did it bedside) was awful. That tube looked 12 inches long! And once it was out, he lost alot of fluid...it just wouldn't stop coming out! He was finally able to put the glue on it and get it to stop. So he has one IV in his wrist, his Broviac, and his feeding tube...that's it! We gave him a little bit of a bath this morning to clean up the obvious spots. He looks so much better today. He's acting very crabby, which I can only imagine how he's feeling. He has every right to be crabby! He's breastfed some, and actually has taken a bottle. As much as I am into breastfeeding, if we can get him to take a bottle, I will almost be relieved. This pumping and storing and only getting 1-2 ounces is getting to be pretty tough on me. Whatever is best for him, I will certainly do. Last night he was given pain medicine orally and threw it up. So she came back with more and he threw that up. So he's back to Morphine, but hopefully he won't need it much longer. It makes him lethargic. Keep praying for us. We're hoping we aren't in the hospital too terribly long. I can't wait to bring him home!
The doctors and surgeons couldn't be more pleased with him. So from a medical stand point, he's doing wondeful. From a parental standpoint, I hate to see him so grumpy. He's not in pain, just irritated. He cries whenever he sees a nurse coming in his room. He lost alot of his tubes and drains yesterday. He had a chest tube drain and that's gone! He has lost 3 of his 4 IV's. He still has his Broviac, a central line into his heart...it will stay for a few months. They can draw labs and give him medication without having to stick him. Let's see, he still has a JP drain (that's what it sounds like they're saying...lol I could have that totally wrong) which is draining the fluid out from around his liver. It was bright red, looked like blood, right after the surgery, and it is now pink...which is good. I slept in the bed with him last night. That was uncomfortable, but I loved it! I love that I'm able to comfort him. I missed that connection with him...and drum roll please....He breastfed this morning :) He has been REFUSING a bottle of anything. No formula, no breastmilk, no pedialyte, no apple juice...nothing. So we get the NG feeding tube back :( I kind of assumed with how malnourished he was, that they would put him back on it...just to fatten him up. The surgeon said yesterday that Malakai had the most prominent ribs of any baby he'd transplanted! I was shocked. I mean, I knew Malakai was very skin and sick, but to say he was the most boney of any kid he'd transplanted shocked me. I guess I wasn't really telling people how bad he was because it was scary. Just not knowing what would happen next or how soon things would be happening.
Mom, Brian and Rachel all left today. I was soooo thankful to have them out here during the first few days of transplant. I don't know what we would've done without them! Brian and Rachel kept Makena so we didn't have to worry with who would be keeping her. We knew she was in good hands and she likes them. THANK YOU GUYS SO MUCH!!! Makena has been going to the Siblings Playroom they have on the lower level. I am so thankful for that place. She loves it down there and it's somewhere she can go from 9-12, 1-4, 5-8....they give us a pager and we know she's safe!
The nurse asked me today about how he was with getting his tube put in and I told her it was getting a little more difficult as he got older and she said she wasn't the best at it...so I took that opportunity to say I would do it. I figured with as much practice as I've had, I knew I would do it right. Funny that I am doing the nurses job. I really should go to nursing school after all this is said and done!
Well, it's taken me all day to update this. Hopefully I can get on later and make another update that makes more sense.
Same thing as last night basically...although he has had Pedialyte from a bottle. We are hoping to break his aversion to bottles and get him to start taking formula or breastmilk from a bottle. He's a little sluggish, I think we are going to start weaning him off some of his pain meds. I can tell he's becoming more aware of his surrondings...he's starting to pull his oxygen out of his nose! He doesn't like it and won't leave it alone.. We may have to restrain his little arms, I'm sure he'll love that! He's doing great though. The docs are very pleased! Here's a pic of our little man from this morning...
I am so glad the surgery is over! What a roller coaster of emotions! He is currently sleeping in the PICU and mom is going to get some dinner. We have to eat in the waiting room so I have to wait here until she's done. I thought I'd jump on and give an update.
The doctors are very happy with where he is. His levels are as stable as they expect. He has had a little trouble with pain management, he did at Riley during his Kasai so I sort of expected it. He's on a continuous morphine drip right now so he's staying pretty comfortable, but still gets irritated occassionally. He's going to have a few blood transfusions, I guess that's pretty normal. He's got a lot of drains and IV's right now. A little overwhelming. I am going to try to post some pictures of him soon. I know I would be wondering what he looked like :) We found out the donor was a 10 year old. My heart aches for the family. It's absolutly bittersweet. I can't hardly think about it. I am so grateful for the decision they made to make their loved one an organ donor. I can only imagine the pain they are going through right now. I am praying that God pours out an abundunce of grace and peace on them right now. I hope they know they saved a little boys life! I'm also thankful I didn't have to go through surgery. I can't imagine being in a hospital bed across the street and not being able to see him and talk to him. They are supposed to be getting an actual patient bed in his room so I can lay next to him. He wants to be held and cuddled, but that's kind of an impossibility right now. So the next best thing is for me to lay with him. I hope it comforts him.
I know the road ahead of us is going to be a long one, but I just am looking forward to seeing him well! I can't wait to see him do the things we have been waiting for, like rolling over, sitting up, etc. Those who've been through this before have said they didn't realize their child was as sick as they were until after transplant. I can see how this would be true! I can't wait to see him thrive! He is a fighter and I have a feeling this recovery will be fast for him!
Continue to pray for him and us. We are rotating our sleep schedules right now so that someone is always in the room. But it's still very exhausting! Thank you to all that are continuing to pray for us!
First of all the surgeon came into his hospital room and said and I quote "he needs a liver transplant" no kidding that is why we are here, man it made me mad. But I quess you can't mouth off to the guy who is getting ready to operate on your kid. Anyway, they took him away at 10pm. They took us off to the waiting room with a phone in it so they could keep us updated. At 11pm they called back and said that they had all of his lines in and they were ready to start the procedure. They called back at 1am and said that he needed a little blood but that was normal and that he was doing well. Everytime the phone rang my heart stopped. I kept running through the day were the doctor came in the room at Carah's dad's (Tom) transplant and said "start praying" one of my biggest fears through this whole process has been reliving that moment. At 2pm they called back and said he needed more blood and that his old liver was out and that is new liver was being worked on. The next hour after that was very mentally exhausting, you really just tried not to think. Then at 4pm the surgeon came in and woke me up and I really thought I was going to pass out. He scared me so bad I embarassed him. He said his new liver was in and it vitalized and he was doing great. He said he was already producing bile flow. So now we are waiting to go see him in the picu.
This is what he looked like when he was at Riley Childrens hospital in Indiana. He stayed this way for about 5 weeks. As of today his belly is normal. He had approximately 2 liters of fluid on his belly. God blessed him though he was as happy as a lark the whole time.
We got the call for a donor this morning at 9am. They said there is no rush to get to the hospital. They said the surgery will be around 6pm, hopefully its not a dry run like last time. I don't think my emotions could handle any more suprises. Malakai's mood has changed since we got the call, we know he can feel the emotion in the air, even though you try to fight through the emotions. It's hard to believe that this is were the hard part really start's. Say a prayer
Alot of time has passed since my last post. We are currently sitting in St. Louis waiting for a new liver for Malakai...let me explain.
February 22 I took Malakai into Riley. He was scheduled to go in on the 23rd to give him some albumin and lasix to try to reduce his ascites (fluid on his belly) and insert a feeding tube. He had decided he didn't want to bottle feed anymore at all and had started to turn down the breast. He needed the calories, he didn't have any reserve to not eat. But the day before he started acting lethargic so Cindy and I headed to the ER. He was admitted and his sodium level was dangerously low (112...135-145 is normal) so he was sent to the ICU for three days. This made his ascites worse and at his worst he looked 9 months pregnant. We spent four weeks at Riley trying to get his belly to go down and didn't have much luck. They mentioned that he was probably heading down the transplant road and we needed to look into the hospital we wanted to transfer to. We'd decided on going to Cincinnati Childrens and scheduled for him to be seen 10 days out. The docs at Riley told us that St. Louis Childrens was a great place so we called and they got us out there the very next day. They sent a jet out to get him and Josh, Cindy and I drove out there. We were at St. Louis for 8 days and went home. He was put on the transplant list on March 20 with a PELD score (Pediatric End-Stage Liver Disease) of 5 but they requested a 25 and it was granted.
Fast forward, he got his first call April 24 and we turned it down. We were waiting to see if Cindy (Josh's mom) was a match for living donor. We wanted her to be a "back-up" incase something went wrong during the transplant. She was blood type O, which matches Malakai. To those who don't know...my dad died after a lung transplant and I would feel way better about the surgery if he had a back up. It took them 6 weeks to tell us she wasn't a match. We felt OK about turning a liver down because he was doing so well. We got his second call on May 1st, exactly one week later. We dropped everything, packed what we could and headed to St. Louis. We got to the hospital and they checked his levels. They wanted to have a starting point for post-transplant. His glucose level was really low (27...over 50 is what they want it to be) because his feeds had been shut off too long. So they got him some sugar water and hooked him up to an IV. Within 5 minutes his levels had become normal and he was acting much more alert. I took him down to get a chest X ray to make sure his lungs were clear and we waited...Perry and Cindy got there, and we were told his surgery was scheduled for 9:30 pm. They said they would come get us and take us to the OR around 8:30 - 9...at 8:35 the surgeon came in and said the liver wasn't going to work out. He said the way the "plumbing" was that they would have to take too big of a piece and it would work for Malakai. So we went home and had to come back in 4 days for his clinic appointment. While at clinic the doc expressed her concern about his weight gain and some of his levels. He needed albumin three days in a row, but they gave us the option of staying in town and coming back daily instead of being admitted. So we decided to get an apartment in St Louis. It will cut back on the stress and anxiety of waiting for the call and we would be close. I had a gut feeling that I needed to have my bloodtype checked, just in case. I was SURE that I wasn't O but wanted to check just in case. To be a living donor, you have to first have the same blood type, then they do further testing to check your liver more in depth. Sarah called me from her docs office, she had an appt that day, and told me that we were O...since we're identical twins, her bloodtype is my bloodtype. So I called up the Barnes Hospital where the living donor would be seen and got in that day. All my testing is done and now we wait. They've scheduled our surgery for May 19th if I am indeed a match. They will still take a deceased donor if one becomes available before then. But if not, and I am a match, that will be the day of his transplant.
I know there is a LOT that I left out. I just don't have the time or energy to remember it all right now. My email is Carah117@yahoo.com if anyone has any questions or comments at any time. I will try to check it daily or at least at have someone else check it for me! Please pray for everything to go smoothly and that Malakai gets his perfect liver!