Tuesday, May 12, 2009
We got THE CALL
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
Sunday, May 10, 2009
Wow, I have alot to catch up on!!!
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!
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!
Monday, February 16, 2009
He's found his voice!
Malakai has officially found his voice! He has started to scream, because he knows that he can. Not a crying scream, like a "Hey, don't forget I'm over here" kind of scream. At first it was cute, now it's become annoying....all in one day! LOL I'm sad he's growing up. I want him to stay my little baby forever :( I guess it had to happen sometime. Now I'm going to have two kids screaming for my attention, literally!
Saturday, February 14, 2009
Happy Valentine's Day!
Nothing really exciting to update on, which in our case is a blessing! Malakai is doing well. He's happy as ever. I am sure he is the happiest, sweetest baby I have ever been around. He's suddenly gained this new "independence" and has started to reach for my glass, book, anything I have in my hands. He's also begun chewing on a blanket when he is in bed or his carseat. Maybe he'll be one of those cute kids you see toddling around with a blanket, I hope so! We got a call from Riley saying his last blood draw (a week ago yesterday) came back, and his levels had decreased again. Not by alot, but anything is good! His bilirubin level is now 4.o. Praise God, it keeps going down! We are currently trying to sell our house and had a showing yesterday, praying that God does something and we sell soon. It would be a huge weight lifted off our shoulders. Makena is turning into the cutest little girl. Her new favorite game is hide and seek, although she hasn't quite got the concept down yet. She likes for us to hide, and screams when she finds us! When it's her turn to hide, she gets confused...says she's ready, then doesn't hide. It's cute, and so much fun.
Sunday, February 1, 2009
What a week!!!
A LOT has gone on since I updated last! Last weekend, we went to Sarah's house for pizza. Rita and Mom came and we had a pretty good evening. Makena had started to cough around 3 pm or so, but nothing I worried about. It progressively got a little worse through the evening and by the time we got home it was pretty nasty. I asked Josh if he thought we should sleep with her so we could keep an ear on her. We decided not to, and she went to bed. Her voice had gotten hoarse at this point. At about 4 am, she woke up crying our names out and we brought her to bed with us. She tossed and turned, moaned and groaned. We decided to come downstairs and let her watch TV to see if she'd calm down a little bit. We took her temp, it was 99 and decided to call her pediatrician. Her cough had become "barky" and we were wondering what to look for. Malakai woke up, so I went upstairs to feed him. When I was coming back downstairs, Josh was going up to Makena's room. She'd thrown up and he was going to change her pajamas. She was shivering laying on the floor, so I went and put a towel in the dryer to help warm her up. We took her temp after they came back downstairs and it was 102.4.Then the nurse called back and told me to uncover her, it could make her temp go up. So she went through all the symptoms and determined she probably had croup and to put her in a steamy bathroom, turn a humidifier on in her room, etc. Her temp was up to 104.5 at this point, The nurse told me to take my temp to make sure our thermomator was working properly. As I was taking it, Makena went limp in Josh's arms and was basically unresponsive. He told me to call 911 and I hung up on the nurse. Called 911 and then we called Dan. He told us to lay her on the floor and put cool towels on her. So we did just that, and she seemed to "come back" a little more. Slowly, but surely she started to talk to us. It was the scariest thing we've been through with her. Her fever spiking so fast scared me to death! I was trembling, and trying to talk to her like nothing was going on. I didn't want her to see me scared. I was asking her questions I knew she could awnser. Finally, she began talking to me in sentences! The ambulence got to the house and she got a little frightened. There were about 5 strangers in our house, so she didn't know what to think. Her fever was down to 101.5 when we left for the ER. She sat in the ambulence like such a big kid! I was so relieved she was coming back to normal. We got to the ER about 6 am and her fever was almost completely gone! Praise God!! We saw the doc who confirmed it was croup. Her voice was hoarse and her cough was TERRIBLE! It lasted a few days and she is now completely well.
THEN, I started to notice Malakai's belly was getting big. He's never been thin in his belly, but it was definatly getting bigger. I noticed this on Saturday, and he had his 4 month check up with Dr. Bohney on Monday so I decided to wait. Dr. Bohney said he would call up and talk to Riley and let them know what was going on and they would give us a call. Dr. Molleston's office called me and told me they were going to start him on a diuretic. We had a huge snow storm (12 inches) and so we had to wait until Wednesday to get it. On Friday, I took the kids to Perry and Cindy's house and Cindy expressed her concern on how Malakai looked. His belly was bigger, he was pale, you could see the veins in his belly and head like you had never been able to see them before, he was irritable and wasn't taking a bottle. He's been bottle/breast fed since November. He's never refused a bottle until this week. So I decided to make a call to Riley Friday afternoon. (1-30-09) I got a call back at about 4:30 and told to come up to the ER to be evaluated. Two trips to the ER in less than a week!! I hope this never happens again! I took Makena to Rita's and Cindy and I headed up there. Josh and Perry were working about 1 1/2 hours away and were going to meet us up there. We got up there about 7 pm. He had blood drawn at 9 pm and we were told it would be about an hour for the results. It took about 3. They came back and said he was dehydrated and wanted to keep him overnight on fluids and recheck him in the morning. Normal levels were 21-28, dangerous is 15 or under and his was 18. It was so weird to hear he had extra fluid in his belly but was dehydrated! He was on a medication to pull fluid out of his belly, and then put on fluids for dehydration. They just had to find the balance, I guess. The nurse told us they were extremely busy and we may not get put into a room. Our nurse tried to do a cathedar to check him for a urinary tract infection, and when he was unable to get any urine, he removed it and there was a tiny bit of blood in it. The guy DID NOT know what he was doing and it made me so mad. To put him in pain for no reason! UGH!! They put his IV in and we sat in the most uncomfortable chairs until 3:45 am when we were finally moved up into our room in the Infant Unit. He weighed 12 lbs. 7 oz The docs came in and told us we would have an ultrasound to check the fluid in his belly but there wasn't much else they would do. We then waited until 8 pm before they finally gave him the ultrasound. It showed what we expected, a moderate amount of fluid in his belly (called ascites). They drew labs again this morning and his dehydration level went up to 20. He had been on a special formula that he did not like the taste of. They said we could switch him to regular formula and mix it with breastmilk to add calories. They weighed him again and he was up to 13 lbs. 3 oz. I'm not sure how much was the IV fluid, but I was happy he'd gained! His vitamin K level was low so we were sent home with a script for that. They increased his diuretic by 50% and we were told to get his blood drawn at the end of the week. The doc said it would take 1-2 weeks for his belly to go down in size, the medicine is a slow working med. Thank God he doesn't seem to be in any pain because of it. They said his liver is not processing protein as well as it should be, therefore it's being released from the blood and spilling into his belly, causing the swelling of the belly. We are continuing to pray that God heals Malakai's liver and restores it to normal. Please pray the same! Our little miracle has already been through so much, we really want this to be the last time he's in the hospital! I can't believe I almost forgot to add, his bilirubin levels have gone down again!!!! Thank you Lord! They were at 5.6 at his last appointment and it was down to 4.4! All of his levels had decreased! He doesn't have much yellow at all left in his skin or eyes. You'd never know he had liver disease! What a true awnser to all of our prayers! Ok, I'm tired of typing and need some sleep. Thank you to everyone who is praying for us! We appriciate every single one!
God bless,
Carah and Josh
THEN, I started to notice Malakai's belly was getting big. He's never been thin in his belly, but it was definatly getting bigger. I noticed this on Saturday, and he had his 4 month check up with Dr. Bohney on Monday so I decided to wait. Dr. Bohney said he would call up and talk to Riley and let them know what was going on and they would give us a call. Dr. Molleston's office called me and told me they were going to start him on a diuretic. We had a huge snow storm (12 inches) and so we had to wait until Wednesday to get it. On Friday, I took the kids to Perry and Cindy's house and Cindy expressed her concern on how Malakai looked. His belly was bigger, he was pale, you could see the veins in his belly and head like you had never been able to see them before, he was irritable and wasn't taking a bottle. He's been bottle/breast fed since November. He's never refused a bottle until this week. So I decided to make a call to Riley Friday afternoon. (1-30-09) I got a call back at about 4:30 and told to come up to the ER to be evaluated. Two trips to the ER in less than a week!! I hope this never happens again! I took Makena to Rita's and Cindy and I headed up there. Josh and Perry were working about 1 1/2 hours away and were going to meet us up there. We got up there about 7 pm. He had blood drawn at 9 pm and we were told it would be about an hour for the results. It took about 3. They came back and said he was dehydrated and wanted to keep him overnight on fluids and recheck him in the morning. Normal levels were 21-28, dangerous is 15 or under and his was 18. It was so weird to hear he had extra fluid in his belly but was dehydrated! He was on a medication to pull fluid out of his belly, and then put on fluids for dehydration. They just had to find the balance, I guess. The nurse told us they were extremely busy and we may not get put into a room. Our nurse tried to do a cathedar to check him for a urinary tract infection, and when he was unable to get any urine, he removed it and there was a tiny bit of blood in it. The guy DID NOT know what he was doing and it made me so mad. To put him in pain for no reason! UGH!! They put his IV in and we sat in the most uncomfortable chairs until 3:45 am when we were finally moved up into our room in the Infant Unit. He weighed 12 lbs. 7 oz The docs came in and told us we would have an ultrasound to check the fluid in his belly but there wasn't much else they would do. We then waited until 8 pm before they finally gave him the ultrasound. It showed what we expected, a moderate amount of fluid in his belly (called ascites). They drew labs again this morning and his dehydration level went up to 20. He had been on a special formula that he did not like the taste of. They said we could switch him to regular formula and mix it with breastmilk to add calories. They weighed him again and he was up to 13 lbs. 3 oz. I'm not sure how much was the IV fluid, but I was happy he'd gained! His vitamin K level was low so we were sent home with a script for that. They increased his diuretic by 50% and we were told to get his blood drawn at the end of the week. The doc said it would take 1-2 weeks for his belly to go down in size, the medicine is a slow working med. Thank God he doesn't seem to be in any pain because of it. They said his liver is not processing protein as well as it should be, therefore it's being released from the blood and spilling into his belly, causing the swelling of the belly. We are continuing to pray that God heals Malakai's liver and restores it to normal. Please pray the same! Our little miracle has already been through so much, we really want this to be the last time he's in the hospital! I can't believe I almost forgot to add, his bilirubin levels have gone down again!!!! Thank you Lord! They were at 5.6 at his last appointment and it was down to 4.4! All of his levels had decreased! He doesn't have much yellow at all left in his skin or eyes. You'd never know he had liver disease! What a true awnser to all of our prayers! Ok, I'm tired of typing and need some sleep. Thank you to everyone who is praying for us! We appriciate every single one!
God bless,
Carah and Josh
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