Monday, June 21, 2010

I hope everybody had a great Father's day weekend! I am so grateful to my own father for all the sacrifices he made for our family growing up. His kids are his life. He truly invested ALL of his free time into raising all 8 of us. I don't remember my Dad having any outside hobbies, interests,or friends because I think that more than anything he genuinely loved being with his family. He took every opportunity he could find to teach us and create memories with us. Thanks Dad!! I love you!! Furthermore, I am extremely blessed and grateful to have the very best husband and Father for my own children that there is in this world! All of my children adore their father and have great relationships with him. Matt is so busy that beyond work, like my Dad, the only free time he has is spent with the boys. Josh, Luke, and Matthew live for every moment spent with their Dad. Thanks for all you do for us Matt- we love you more than words could ever express!

Our family had a great weekend. We had a family campout in the backyard and enjoyed being together, making smores over the firepit, playing games and attempting to sleep in the backyard in the tent (we almost made it but Luke was too scared of the crickets so we came inside early to try to get some sleep). Matthew must have said "I so happy!" about 20 times (literally) that night. The rest of the weekend was just as fun- Matt had the weekend off!! That alone, was the best Father's day gift anybody could have given him :)

Matthew continues to recover. He regressed a little since our last post. For a little over a week cardiology has been watching his white cell counts which continue to drop (his ANC is .4 for those who care to know). He is on a medicine called Valcyte because his donor's heart tested positive for a CMV virus. Typically this virus is not very threatning, in fact many of us could be carriers with no symptoms at all. However, when you are immune compromised and then exposed it can turn into a big deal. They are thinking the Valcyte is causing his levels to drop to as low as they are but they really can't do anything about it for 6 months until his treatment for CMV is complete. Until then, we are getting creative with some of his meds and hoping that we don't have to adjust his Cellcept (one of his immune suppressant drugs). He may need to start some injections of some sort to try to stimulate bone marrow production again. We'll see-- it's an appointment by appointment process. Until then, we are being even more careful about spreading germs (if that is even possible). I feel like I'm going through laundry, face masks, Lysol, and paper towels like crazy.

We also met with a dietician who told us that although Matthew is eating a lot better, he is still only intaking 1/2 the calories he needs. So, in went another NG tube. I was really upset about having to put in another NG tube, but then he started rebelling against taking his meds by mouth and I figured it's good to have an alternative route in case he's not cooperative. He also started throwing up and for the past three days (as part of his bedtime routine I'm guessing) he likes to throw up his NG tube so we have to replace it nightly. I know recovery takes a long time, this weekend brought me back to reality! He's such a sweet, happy little guy. We sure do love all our kids lots!!

Tuesday, June 15, 2010

Matthew had an appointment yesterday with Cardiology and they gave us the go ahead to take out the NG tube. Now, for the first time in a month, Matthew is completely free of any wires or tubes!!! He is doing awesome. The doctor also said that his first two heart caths and biopsy's looked perfect so we get to wait for another month to repeat his next one. For the time being, we only have two appointments weekly where they will check his blood, do an echo, and go over his ever changing and adjusting list of medications. Matthew is even getting used to the doctor's office routine. The other day when we were at an appointment, the cardiologist said "now I better take a listen to Matthew." Matthew jumped off my lap, walked over to the doctor and lifted up his shirt. Then he turned around so she could listen to his back. After she was done Matthew excitedely ran over to me and exclaimed "I did it!!!"

Today was the first weekday I have had Josh and Luke back at home without doctor's appointments and it was wonderful!! We felt somewhat normal and are getting into a summer routine. Joshua and Luke are best friends. I love to see their relationship develop, especially through the difficult times. They also LOVE playing with Matthew. Matthew follows them around all day long. Joshua told me that Matthew is like a toy that got a new battery. The toy is the same, but because of the battery the toy has much more energy. I always love how Joshua explains things so perfectly....

Friday, June 11, 2010

The boys are back in town! After being away for almost two weeks, Joshua and Luke rejoined us. I wish that I could have captured Matthew Jr's face on camera when I pulled up. They spent the evening building blocks, playing with cars, and pushing each other around on "McQueen". It is so nice to have them back. Thank you Liz and Kurt for taking such good care of them.

Matthew Jr. had another heart cath today. It was only the 4th doctor's visit this week. If he ever gets sick its gonna be bad because it will come from some doctor's office. We are getting better with the sedation issue and thankfully he came out of it okay. He took a good nap this afternoon and this evening he was back to himself. We also got a telephone call and they again informed us that there was no evidence of rejection.

I hate the idea of rejection. You are never safe. It is always there . . .lurking. I am sure that it will cross our path someday but for the time being I am just happy that he is doing well.

Wednesday, June 9, 2010

Today is Matthew's three week mark from his initial transplalnt surgery. When I think of what has happened during that time, my head starts to spin. It feels like it's been three months, not three weeks.

Matthew is still recovering, but he is doing awesome! He is doing things he's never done before. The other day, he was playing in the living room and just took off in a sprint. Me and Matt looked at each other with amazement and wondered if what we had just seen had really happened. Matthew has much more energy then he has ever had and he is sleeping less (he was sleeping 18 hours a day prior to surgery). The other day he wanted his blankie from upstairs in his room so I went up to get it. By the time I got the blanket and turned around to bring it to him- Matthew had made it halfway up the stairs and WASN'T lying down taking a breather in the middle of the stairwell like he used to. Yesterday Matthew had an appointment with his pediatrician and she was amazed out how well he looked. She told me that the last time she saw him, prior to surgery, he looked like a tired old man. Since transplant he looks like a totally different child she said.

Josh and Luke finally come home Friday and I CANNOT wait!!! I am hardly ever away from my kids, so this has been a difficult challenge for me, and them. Matthew told me he was mad at Josh and Luke yesterday because they aren't home. I think Matthew will finally be able to keep up with his older brothers and all three of them will have a blast together. Thanks again Liz and Kurt for showing them such a great time in Arizona and thank you Jen and Ryan for bringing them back to us!

We will let you know how the biopsy goes on Friday. Until then, please pray for good news from the biopsy and a smooth recovery after sedation. Thank you to everybody for your continued support!

Monday, June 7, 2010

I just got back from Matthew's appointments at Primary Children's. I am happy to say that the fluid around Matthew's heart (pericardial effusion) is now completely gone. He will get a biopsy again on Friday. Everybody pray that he comes out of sedation well-- I don't think I can handle another overnighter at PCMC! We will let you know what the results show, which will probably be early next week.

Matthew is doing awesome! Lately he is talking up a storm. Me and Matt can't tell if Matthew has become a jabberbox because he has 2 on one attention lately or if it's because his brothers are gone and he finally has the chance to speak for himself. Whatever the reason, we are happy to hear it. :)

Saturday, June 5, 2010

No news is good news- right?? Things have been crazy lately. Matt is back at work full force, and Matthew keeps me busy. I am getting more used to Matthew's new schedule and I'm happy to say that I am much more efficient at drawing his meds. He is tolerating everything really well. I am enjoying each minute with him as he continues to get stronger each day and loves to have one on one play time with Mom.

We had a doctor's appointment on Friday and found out that the pericardial effusion they've been keeping tabs on through echo is now shrinking and his labs looked perfect. We have another appointment scheduled for Monday, Tuesday, and another biopsy scheduled for Friday. In the meantime they have given us some new rules: Matthew cannot go anywhere public (including church, movies, restraunts, grocery stores, and even extended family gatherings), our other children should not have friends over to play, when our children get home from friends they need to strip down and scrub in to enter the house- etc. So basically what we have been doing is walking around our house with masks on. We have been going for drives in the car to get out (by the way, I get some pretty bizarre looks when seen driving with a mask on in the car) and I take Matthew to some unpopulated location to go for walks outside with him. I know, it's crazy! They are telling us that for these next 4-6 months Matthew needs to be in isolation. A few adult visitors at a time are okay to have over, but other than that.... nothing until they start weaning his anti-rejection meds. As it is right now, he basically has no immune system. He is on 3 different immune suppressants and then on antibiotics and other meds to protect him from any virus, fungus, etc he may be susceptible to. That's okay-- Matthew is worth it!! I sure hope Luke and Josh agree when they get home!

Overall, we feel VERY blessed! The past 3 weeks still feel like a blur. Last night when going to sleep I went to get my cell phone to put on my nightstand in case we got the "transplant" call in the middle of the night (mostly out of habit). Then I realized we already got the call and that Matthew was already home and recovering beautifully. Things are good...

Thursday, June 3, 2010

We made it through our first day at home! Yesterday we FINALLY got discharged at about 7:30 and it is really nice to be home. Today I feel like my whole day consisted of filling syringes with various medications, putting them down Matthew's NG tube, and then cleaning the syringes. He's on 13 medications and gets meds 5 times a day-- so literally, that's what I did today.

Tommorrow is our first appointment at PCMC and they say that everything we need to do will take 3-4 hours. We just can't seem to really get away from the hospital I tell you. We are hoping things are still smooth sailing. I'm sure they will be. We recognize how very blessed we have been. Matthew is such a miracle and we love him so much. Now we just need the brothers home. Matthew started to cry when he talked to them on the phone today. He said he wants Josh and "Gook". It broke my heart! It will be a happy day when we are all home together!!

Wednesday, June 2, 2010

I can't believe it!! Matthew is free of all tubes and lines at the moment. He is beautiful!! We just got word that the biopsy looked "perfect" and that his echo looked great. The fluid level they saw around the heart has not increased and it looks "fibrous" which means it's old and most likely from surgery. We should be sleeping in our own beds tonight!! They are planning on discharging us this afternoon sometime. The next few days might be crazy, but I am really looking forward to having Matthew at home again.
It's been more than 24 hours since Matthew's biopsy and we are still waiting for the official report. Preliminary results show no signs of rejection, which is good. However, I've been through this too many times to trust anything but the final report coming from the doctor herself. Matthew also had an echo this morning. If everything looks good, we will be discharged today. Everybody has been "training" me for the past two days on how to take care of this sweet little guy. The pharmacist came and spoke with me and Matt yesterday for 45 minutes about the 13 medications Matthew will be on when he comes home. It all seems so technical--who knew that grapefruit would interfer with his anti-rejection medication absorption??? Lots to learn and remember, but we'll get it down. I also have to demonstrate how to place an NG tube on Matthew before they will let us go. I'm really dreading that experience.

So, we wait..... We'll let you know when we know what the plan is. Until then, Matthew continues to get a super round, puffy face as one of the side effects of the steroids he is now on. He is so cute. When he's eating I can't tell if he has food in his checks or if it's just his new round face. Usually it's not the food :) We made it through yesterday and the post-sedation wrestling match. Overall, it really wasn't as bad as past experiences. I think we've figured out a good anesthesia cocktail for Matthew. It's a good thing because they are telling us he'll need a biopsy every other week for the next few months.

Thanks again Liz and Kurt for showing Josh and Luke a good time in Arizona. They went to their first drive in movie and they LOVED it! You guys are the best!

Tuesday, June 1, 2010

Dear Family and Friends,

In our continuing efforts to find a tolerable anesthetic agent for Matthew I feel a lot like the BP CEO this morning. We thought that we had found the perfect agent: Propofol, Laughing Gas, and Fentanyl (wiff) but as we speak Chrissy is currently involved in wrestling with a child who is caught up in some post anesthesia delirium. I can't wait for the next 24 hours to be over. What a bear! The moments of lucidity are almost comical. He just exclaimed, "I'm stuck." (He is because of all of his alligator rolls in bed).

Matthew just got out of his heart cath. It went well. His wedge pressures and PAP pressures looked good. They took several biopsies and we are anxiously awaiting to see if there is any rejection. This is likely the first of many biopsies so we are hopeful that we can find something that works for Matthew. I wish he had come with an on and off switch.

If things look good, I would assume that they would be sending us home soon. We will keep you posted. . . looks like I need to go and tap Chrissy out of the ring.