Wednesday, August 26, 2009

Last night was terrible, today was GREAT!

We arrived in St. Louis around 8 pm...Josh took Makena swimming, which she loved! After about 30 minutes we headed up to our room to get settled for the night...that took about an hour and a half and finally around 11:30 pm, I layed down. Malakai wasn't allowed to breastfeed past midnight, water only until 5:30 am, nothing after that. So he woke up at 2:20 am and cried and cried and cried until about 4:30...then I woke up at 6:15 to shower and get ready for the day. So he was exhausted (and so was everyone else!!) He cried the entire time I was getting ready...broke my heart because he didn't understand why he wasn't getting to eat. His appointment was at 9 am, we were told it would be about an hour. At 9:10 the surgeon came in and said he was all done and did great! 10 minutes!!! He took forever to come out of the anesthetic. We've never been allowed in the recovery room before, but he was OUT! We'd pick up his arm or leg and it would just flop on the bed. It took him about 1 1/2 hours to finally wake up. He just completly snapped out of it! He started to cry, I nursed him, and got him up to dress him and he just started to babble and smile! It was great :) He's a little bruised and is still bleeding a bit but otherwise...THE BROVIAC IS GONE!!!!! He's allowed to take a bath on Friday! I've never been so excited to give my baby a bath! He ate like a champ at both lunch and dinner and is now sleeping soundly. Hopefully he sleeps well tonight!

Tuesday, August 25, 2009

New pictures

My sisters, mom, and I took the kids to Brown County a few weeks ago for Mom's birthday. It's a big state park in Indiana. We got a cabin and the lodge had a big indoor water park. The kids had a blast. We decided to take their pictures before we did anything, while they were all in good spirits and before they could get dirty :) They turned out GREAT! I don't know why they are so small...all of them are small except for the one of Makena...Anyways, here's an idea of what we were able to get!

Here's the three older kiddos: Emma, Clay and Makena

Beautiful picture of Makena and Malakai

All 6: Emma, Makena, Jack, Malakai, Addison and Clay

Our little miracle, Malakai :)

Our beautiful princess, Makena :)

Broviac removal tomorrow!!!

First of all, we're heading to St. Louis tonight to have his Broviac removed tomorrow! I am so excited!! One more step in the direction to make him normal! Makena will be so excited to get to take a bath with him. She asks almost every time she gets in the tub if Malakai can get in with her. And hopefully it will make bathtime easier for me, although I realize it could make it more difficult! I can totally see her trying to take him under (being sweet about it though! LOL)

Secondly, Malakai is doing FANTASTIC! He's back to being his normal self and is babbling like crazy. He's really starting to act older and it's so awesome to see! He's starting to push his knees up underneath himself and trying to scoot forward. It's hard to give him much time on the floor because Makena will run all over him if I'm not in the room. So, I think if he was allowed a long amount of time on the floor he'd be crawling alot sooner than he is. He's eating great, and starting to sleep better. Hopefully going into the hospital tomorrow won't mess him up!

I've started to plan his birthday party...It is going to be September 19th (he turns 1 on the 24th!). Everyone is invited. I know alot of people prayed for him and us during his transplant experience and I would like anyone and everyone who prayed for us to be a part of his big day. We're going to have a bouncy house and a miniature pony for the kids. Lots of fun and celebration to be had that day :) Please comment or email me if you think you'll be able to make it. I am going to try and get an estimate of how many people will be there! We sure have alot to celebrate!

We've updated My sisters and I pulled an all-nighter a few nights ago and stayed up until nearly 4:30 am making hairbows, only to be woke up at 7:30 by the kiddos. We made some extremely adorable Christmas and Halloween hairbows. Remember, we can customize bows to match specific outfits. We're also now selling hairbow holders, stay tuned for pictures of them...they're so cute! Please check it out!!

Thursday, August 13, 2009

We are home!!

I will do my best to sum up the events of the last few weeks without writing a book!

After my post about his slight fever I took Malakai to his pediatrician Monday (August 3rd) and after looking in his ears she determined they weren't red enough to warrant a fever and just to be safe sent us to Riley. They ran some blood cultures and swabbed his nose to check for anything viral. Nothing showed up and it looked like we'd go home on Thursday (we had to wait 48 hours for the cultures). Then Wednesday he decided he was going to stop eating anything. He'd stopped eating real food Monday, then stopped breastfeeding on Wednesday mid-day. By Wednesday night, his stools were very loose and a greenish color. Thursday he started to spit-up. It wasn't a large amount, but he's start to gag a little bit, then throw up. So I was concerned about what could be causing this. Then he started to have high blood pressure. He'd never had a problem with this before so they had to figure out what was causing it. They said it was high, even for an adult. It was in the 130's-140's/90's-100's. It's supposed to be under 110/70. So that was concerning and the docs in St. Louis asked for a liver scan. Then early, early Friday morning he started vomitting bright green. And I mean, BRIGHT green. So they ordered X-rays and a full abdominal ultrasound at 9 am. About 10:15, after talking to Penny (his transplant coordinator) she said worst case scenario, he had a blockage in his bowel and would need surgery. Sure enough, after reading the ultrasound and Xray, they decided he would indeed need surgery.

They lifelined Malakai out to St. Louis at about 2:15 pm, only four hours after finding out he'd need surgery. His blood pressure was pretty high at this point and he was acting really lethargic. Not really moving much and not caring when they were messing with him. That scared me pretty bad...knowing he was getting ready to get on a flight and wasn't looking good. I was supposed to fly with him and once again, they got into his room with the stretcher only to find out I couldn't go because I didn't have my driver's license! This happened when he was airlifted to STL the first time. I couldn't go that time because there wasn't room. So I had it in my mind that I was flying with him until the transport team arrived. I guess lesson learned, grab my purse ANYTIME I leave the house. That was the only time I broke down during all of this. I haven't cried in awhile. But them telling me my son needed an emergency surgery and then taking him from me was more than I could handle! I kissed him on the forehead and he was straining his neck to see me as I walked away. I had his stroller in his room and literally pushed past the nurses to leave his room with an empty stroller. I was crying and didn't want to see him being taken away. I am feeling the same emotions all over again!!

So he got to STL and they did their own scans to look at there. He was taken into surgery around 10 pm and it took a few hours to complete. He did very well. They said after his old liver was taken out, his diaphram was left a little thin due to cutting it away from his body and because his new liver was a little too big it had to be put in a different place than his first liver. Over time, his diaphram got a little hole in it. So his intestine was able to move up into the small hole, creating a hernia and therefore creating the obstruction. That's why he'd stopped eating, starting having diarrhea, and eventually throwing up bright green bile. They put a small skin graft over the hole. He stayed two nights in the PICU and was sent to the regular floor on Sunday afternoon.

He had a chest tube in and as soon as they took it out, he was so much more comfortable. The surgeon (Dr. Earl) that came in to remove the tube said that he was the toughest kid he'd ever removed a chest tube from. He didn't even flinch!! He said "I would've been screaming if that were me!" So needless to say, I have one tough little guy :) He also had an NG tube to suction the contents of his stomach out, but he decided to remove that on his own :) He started to breastfeed again and was pooping again so they sent him home!

I was reminded again how much I LOVE the team at St. Louis Children's Hospital. We are so blessed to have found them and I can't say enough wonderful things. Anyone looking for a liver transplant team, I would HIGHLY recommend this facility and team! We trust them all with our son's life, with no questions about why they do what they do. I feel like each and every person on their liver team truly cares about Malakai. I feel like they do their job to save lives and they truly care about their patients on a personal level. And the nursing staff is wonderful as well. Everyone was so excited to see him!(Don't get me wrong, I love the Riley nurses as well! Just not thrilled with the doctor staff...) Dr. Lowell, his transplant surgeon, couldn't get over how great he looked! He just went on and on about how much weight he'd gained and how he didn't even look like the same baby!! He said he wanted a before and after picture because he just looks that GREAT!

Ok, before I make this a book like I promised I wouldn't do...Thanks to everyone who prayed for us. This 10 day hospital stay was the first I did mostly by myself, so that was a challenge but now I know I can do it! He's getting older and realized more than he ever has about what was going on. So please continue to pray for health over Malakai and that he is over this stage and can go on to live a normal, healthy life!

Sunday, August 9, 2009

Surgery was a success! (via Rita again)

Malakai's surgery to remove the obstruction occurred on Friday night. It took around 2 hours. They were able to go back in through the scar from his transplant, and they discovered that the obstruction was from a spot where his original liver was attached to the inside of his abdomen. When they removed his liver, this created a small hole, and his intestines worked themselves into this hole. In essence, the hole squeezed shut his intestine. (I'm sorry if these details aren't 100% accurate, I'm going by what Josh and Carah have told me in our brief conversations). They also discovered a small hernia and fixed that during surgery as well. He went to ICU after the surgery, and has been on a high amount of pain meds. They have begun to reduce what he is taking, and because of this, he's beginning to act a bit more like himself. He will be leaving the ICU today!! Yea!! Carah will be able to use her cell phone in his room once they have left the ICU, so she'll be more able to be in touch with us back home. Continue praying that he recovers quickly!

Friday, August 7, 2009

Obstructed bowel--to St. Louis again.

After a second rough night of vomiting, Malakai's belly began looking swollen again. Riley decided to do an ultra sound and x-ray, and noticed what they thought was an obstructed bowel from surgery related scar tissue. Once this was confirmed, Josh and Carah decided to have Malakai transferred out to St. Louis to do the surgery necessary to fix this. Malakai was life-lined, and Josh and Carah drove to meet him. The surgery will take place this evening. More to come...

Thursday, August 6, 2009

Malakai's update via Rita

Carah and Malakai were sent up to Riley on Monday due to Malakai running a temperature. Initially it was thought he might have an ear infection, but that was quickly ruled out. After blood and urine tests, nothing of real significance was found, but he was still experiencing some not so wonderful, vomiting, diarrhea, lack of appetite, etc. The doctors have indicated that they believe he has some sort of a stomach bug, but that it has hit him harder than it would most babies due to his compromised immune system. They are treating the symptoms right now, hoping that he will regain his appetite soon. They are waiting for him to remain fever free, and resume breastfeeding/table foods before he will be discharged. So, like always, we wait...

Sunday, August 2, 2009

Had our first post-transplant scare...

Malakais appetite lately has been down. He's not been really interested in eating and he's been drooling alot. I chalked it up to teething and didn't think much of it. Yesterday he was crabby and wanted to be held as much as I would hold him! We had a showing on the house at 2:30 and so I had to clean and couldn't hold him as much as he wanted. He was cranky, but was managable. I put him to bed early and he woke up around 2:00 am to nurse. When I picked him up I noticed he was really warm. I asked Josh to get the some Tylenol and the thermometer. It was 100.2 F (37.9 C) I called the doc on call and he said if it reached 38 we'd need to take him to the ER but to watch him overnight and as long as he was able to sleep we could wait until morning. Long story short, all day today he's been off and on with a low-grade fever. When he was discharged from the hospital after transplant, we were told to call if his temp reached 38 Celcius (100.4 F). With his Broviac still in, a fever could be a sign of an infection, so they always want to double check to make sure this isn't the cause of his fever. His temp never got that high, thankfully...but it hung out around 37.9 C (100.2 F) alot today. I spoke with the on-call GI doc about four times and he told me to get him into his peditrician tomorrow and as long as he doesn't reach 38 it'll be fine to wait. He's been tugging at his ears and drooling like crazy so Josh and I think maybe it's teething or ear infection. Either way, we don't believe it has anything to do with his liver. We've been giving him Tylenol every 4-6 hours as needed. As soon as it kicks in, you can see a huge change. He'll start to babble and smile. Then a few hours later, he's back to being fussy and irritable. Hopefully by morning he'll feel alot better. He didn't really eat much at all today. Drank about 4-6 ounces of juice and breastfed, but really didn't eat anything solid. Again, hopefully tomorrow will be a better day. Having a simple childhood illness will be totally different with Malakai than with Makena or any other healthy child. I guess we saw a glimpse of that today. I'm sure with time it will get easier, but I kept thinking the worst all day. Say a prayer for Malakai if you read this.