Friday, March 27, 2009

Oh the "talk" has started!!

Joshua's biopsy results came back. He is NOT in rejection!! PRAISE THE LORD!! I can't tell you how happy I was to hear those words today. He also had an echo, x-ray and an EKG today. The echo score, was 0-1!! CAN YOU BELIEVE IT!!! The lower the better. They are going to redo it on Monday just to make sure that it is not a 2-3. That still isn't too bad. They just don't want to think that if it changed to a 3-4 that he was in rejection because of an 'off' number. The last #'s that I heard was during the rejection bout. They ranged from 5-12. I think 12 is the worst it can be....but don't hold me to that.

He has been working so hard. Today he ate 2 bottles. One this morning when he took a WHOPPING 25 cc's and this afternoon when he took another 20. This may not seem like a lot but to a little guy who has NEVER bottle fed, this is a BIG deal. :) We think that we are going to go the tippy cup on Monday because he isn't very patient at getting out of the nipple and seems to be swallowing ok.

They are giving him a little 50 cc bolus of fluid right now. The thought is that maybe he is a little dry. He has been cranky and gaggy today. Not really running a fever but not 100%. He has been playful and chatty through the day too so I don't think he is sick.

We got down on the floor on the mat today and played with toys for about an hour. He was pretty exhausted afterwards but we did have fun. He is getting to the point that he really likes banging his toys together and against the crib to make as much noise as possible. I LOVE IT!

And for the he wore big boy clothes!

Trevor and my dad will be here tomorrow. I am so excited! It is Trevor's spring break and I have been planning some special things to do. It is very hard for me to leave Joshua at the hospital but as Dr Kemna reiterated to me is ok to go out and have fun. Trevor needs his mommy too! Thanks Dr I can do it guilt free (almost) Dr's orders. :)

I have scheduled a whale watching tour for Sunday and plan on taking him to see "Monsters vs Aliens" and maybe the Point Defiance Zoo in Tacoma. FUN FUN FUN. I am sure by now you have to be wondering why I mentioned the "talk"?? RIGHT?? Rumor has it around here that if he continues to do as well as he has been doing that not next week, but the week after we can start to talk about going to the Ronald McDonald House!! WHOOOHOOOO. Pharmacy will start with my training next week and I will start to plan with the coordinators a little more. Please continue to pray that Joshua does well. We will be the RMcD House about 6 weeks or so and then we are HOMEWARD BOUND!!

Thursday, March 26, 2009

ok....where to start

I suppose I will start at the here and now and work back a little! :)

Joshua is currently in the cath lab. He is having another biopsy done to check for rejection. Dr Johnston will also take a look at his pressures and see if there is anything that he can do to his right PA and SVC (this would be the one hooked up to his angel heart). They are also......drum roll please.......going to REMOVE his chest tubes!!! HOORAY! :) I have every intention of putting him through the torture of actually getting dressed and wearing clothes. I am very excited about this. I am going to have to sneak out in the next day or two and actually do a little shopping for the boy. He has pretty much outgrown all of the clothes that I had previously picked up for him right before transplant. While I was looking for something for him to wear, I ran across something. When James and I brought him over here last May, we had to stop and get diapers because we ran out in the middle of the night before we got to the hospital. Knowing that we were coming here we tried to stretch them out as far as we could. We finally bucked up and I sent James to the store. He called and we bantered back and forth on what size we should get and how many. My reply was....duh....get the size he is in (ones at that time) and get the best deal you can. We are only going to be here for a month at the LONGEST! So last night out I pulled one of the tiniest little diapers EVER! I can't believe that he was in that size and I can't believe that somewhere I have a whole HUGE packet of the darn things. :) Sheesh....a month.....ya right, I say a year down the road!

Joshua has had a great week out on the floor! He has been playing and working hard at getting stronger and developing skills that he eating.....through his mouth. Everyday he takes a little more through the binky trainer than he did the day before. I am so so proud of him.

The effects of the meds is starting to be more prominent. His hair, or bad toupee, is falling out and he hardly has any hair left on top of his head. He is however developing a course blond little moustache. He eyebrows are coming in very thick and dark. Because they were fair and red before it is quite noticeable. They are mostly darker close to his nose so it looks like he is constantly scowling at you. Pair that with the teeth-bearing growl like smile and you can't help but laugh! His cheeks are also showing the effects of the steroids. Here is a perfect example....I dare you NOT to laugh.... :)

I need to run to the surgery center but I will add some more in a bit. Thanks for checking in on us!
Love, Leah and Joshua

Friday, March 20, 2009

Longest week EVER!

It has been the longest week that I can remember. I have been up and down on an amazing emotional roller coaster and I am quite drained. I have so much that I will "chatter" about to get caught up but right now I just want to let you all know.....



Thursday, March 12, 2009

Cranky Cranky baby

Well Joshua has still not really slept. He took a snooze from 5:30 am to a little after 7 am. Today he has slept a total of about 2 hours. He will not stop crying and nothing seems to comfort him. I feel so bad that there is nothing making him happy or comfortable.
All of his #'s for today look ok. He is again, as always, a mystery. They will continue to watch him and see what presents itself. *sigh*
Dr Lewis-Newby asked what my 'maternal' instincts said. All I could do was shrug. By the way that he is acting, I would be inclined to say that it is his teeth. But one would think that at some point the drugs would have to curb teething pain. He has had Tylenol and bolus after bolus of Dilaudid. They even gave him Chloro last night and it didn't work either. He can't have orajel or any homeopathic version of that. He won't use a teething ring. He basically doesn't want anything in his mouth. And whiskey is out of the question ;-)! So.....I am totally out of ideas!
Trevor and my parents are coming over tomorrow night. I am so excited to see them.
Shyla had her college assessment today! :) (YOU GO GIRL! I love you and am proud of you~mom) And Trinity was enrolled in preschool today. She will start on Monday. FUN FUN!
I can't believe how much they are all growing. You blink and they turn 18. Sheesh.

Wednesday, March 11, 2009


They extubated Joshua early this afternoon. He was supposed to go onto bi-pap but he threw a major fit so they decided to take it off and see how he did without it. I think the cool blasts of air bother his gums. He is teething....such an endless process! :-( He seems to be doing ok with just being on the nasal cannula. His morning chest xray seemed to me to look a little better.
Joshua's personal battle seems to be sleep. He would NOT sleep today. No naps....mixed with a teething one year old (regardless of the other obvious issues) is NOT a good combination. UGH. Poor little dude. He seems to really like little mouth sponges dipped in ice. Joanna took care of him today and was kind enough to take over with the sponges so I could go to dinner. Nothing like a couple hours of swapping mouth sticks to make your work day better. :) We gave him some extra meds to help him relax and he just fights them. I had to sneak out at 11 tonight so that I could get some work done at the house. He was still awake.
I have had a lot of questions about the rejection. I still have no answers. The echo today was the same as the others. He is still having diastolic dysfunction which can be a sign of rejection but it has been present since the transplant. It was mentioned today that maybe Joshua will have another trip to the cath lab for another biopsy and a possible CT scan. Right now it is hard to tell exactly what the problem is. If it is rejection the next step of rejection therapy is pretty dangerous. It would require wiping out all of this T cells. He would have no defense to fight infections or sickness. This could become a major issue because we still don't know if the Serratia is totally gone. He also has a lot of open wounds still. They are being very cautious in the decisions on how to treat him.
I did get to hold him tonight. It was nice but he was so tired he just cried. The way he melded into me when I first picked him was very comforting to me. There are days that I just wish holding him and rocking would just make him all better. He makes raising the other kids look like a walk in the park! It was so much simpler and I didn't even know it!
Friend updates:
I was thrilled today to get a visit from Mimi and Mia today! I have followed Mia's blog for quite sometime but today was the first day that I met her. She is AWESOME! I can't believe how great she looks. I sat with her for a few minutes and we played peek a boo. She laughed and was very good for my heart! Thanks Mimi for coming by and sharing your sweet baby! (And for the treats.)
I saw Devon (Karlee's mom) yesterday. They are on the floor and prepping to get out maybe next week! I am so happy that she is doing well, but I miss sharing a room with them.
Gracie had her Glenn recently. I didn't get to see Jen and Paul too much. They came into the ICU at a point that I was in a personal "funk" (I am not so sure that I am out of it either...UGH). So I was very sad to have missed them. I talked to Jen briefly and she said that Gracie was having the Glenn headaches but seemed to be doing good. Please be in prayer for Gracie that she starts to feel better quickly so she can get on home. (Jen, Paul and Gracie~ Thank you for the gifts! We have enjoyed the first CD SO much. I am sure that the nurses think that I am nuts to hum and sing as often as I do. I try not to belt out the reworked tune of Little Liza Jane....Joshua James works great!...they would probably think I was out of my mind. I can't wait to listen to these ones with Joshua!)
Today was Daniel's First Birthday! I talked to Heather this afternoon and she said that he is doing really well! He is getting many of his lines out the next couple days and they are still working on getting him off the vent.
And last but not least...Miss Shayla. She is doing pretty well. She had a couple trips to get checked out but seems to be doing well. She is really getting interactive! She has smiled at me and is trying SO hard to talk. It cracks me up. She did wave at me last night too. (I don't know if it was by accident or not but I am claiming it!) I also broke my "rule" last night. I actually cooked dinner! I made enchilada's for Jamie and I. They didn't turn out as good as I would have liked but they were ok. (Mike is too darn picky so Jamie made him separate ones. SPOILED!) It was so nice to actually cook something. I may have to do it when Trevor gets here. He loves to cook so I am sure that he would like to help me.
Oh~ one more thing. I have been getting cards from a church body in Kentucky! To the members of Liberty Point Baptist Church.....Thank you for your prayers! It is so overwhelming to me to know that the story of this little boy has reached people all over our country.
Thank you to ALL of you who have left messages for us and all of you who pray for Joshua and our family! It has been quite a year. I had hoped that the closer we got to home the better it would be. I have not experienced that. This last couple weeks has really worn on me. The situation with Joshua is not all that I have my plate. I have been trying really hard to not let 'life' get me down but feel like I am slipping in my battle. My motto is to not worry about the things that I cannot change. That works for me most of the time. I don't know what is in store for me in the months to come but I know that change is evident. Please, if you wouldn't mind, I could use a little extra prayer for strength right now.
Good night my friends!

Tuesday, March 10, 2009


You know that I love you as big as the sky and that I miss you more than anything. I can't wait to see you in 3 more sleeps! WHOO HOOO. It is very sunshiny here today and it makes me miss you even more. Did you ask Aunt Theresa to make you a calendar so you count sleeps until spring break? I was so happy to talk to you on the phone last night. It made me very happy! I love you, buddy!

***I was informed that Trevor thinks that I chose this song to put on the blog because I "like to see people cry buckets" although this is not the truth, I have to admit that hearing him sing it to me on the phone did make ME cry buckets! He "knows all the words in his head."


I tried to email you and it bounced back to me.
My email address is or
I would love to chat with you.

I know what you are feeling all too well! I just trusted that God would match Joshua up with his angel heart when the time was right. I never would have imagined that at 95% sensitized he would get a match as perfect as he did. It was a reminder that all things are possible! I know that if it is the Lord's will for Joshua to make it...than he will. Rejection is just part of the deal. At the end of the day I am just reminded that each and every minute that I get to spend with him is an amazing gift! He has been a reminder that life is too short and often taken for granted. Love on Owen extra bunches and don't get discouraged!
I hope to hear from you soon!

Monday, March 9, 2009

Monday March 9th

So I wish I had more of an update for everyone, but I don't. I can tell you what I do know...even though it is not much.
Joshua appears to be feeling a little better. He has not had a fever but is a little clammy. He was awake for a while last night and interacted with me and some today. He is tiring rather easily.
Dr Law came in and we chatted about the events over the last several days. Joshua is in rejection. The big why now....6 weeks post transplant and not sooner. The best that we can come up with is that it started last week when his Cyclo level dipped WAY down into the 40's. The desired level is in the 200's. We tossed around some idea's as to why it may have dipped down but at the end of the day it doesn't really matter. The level dropped and that could have been what started the rejection. He did a course of steroids called MethylPred and it is unsure at this point as to whether it helped or not. His BNP (happy heart #) went from 1700 to 400 to 2800!! You want this # to be VERY low. I remember when he was starting heart failure way back last summer his BNP was 89. I panicked because I thought the # was out of 100....its not! :) 89 is looking MIGHTY good right now!
The did another echo today and are working on getting his electrolytes back into balance. They are all over the place again. He is still on the ventilator but they did wien his settings a little more today. He looks like he is working a little harder we will see what happens. They did an ultrasound of his lungs again to see if they needed to move the left chest tube. There doesn't appear to be much fluid in there but we are still waiting on the formal report. The haziness on the xray could just be from the pneumonia he had in his lungs.
Dr Law was out last week and now that he is here seems pretty concerned about Joshua and this rejection. Maybe there should have been a little more concern expressed last week from other doctors. I have learned to wait and only panic when they do. We are not in panic mode yet but very perplexed as to the what and why with this episode. Please be in prayer for Joshua as he again works over these hurdles. I will keep you all posted.

Thursday, March 5, 2009

Thursday (14 months and one day old!)

So this is going to be a fill you in...mommy reminder...kind of post.

Friday~ Cath lab: They ballooned his right SVC and right PA and his left PA. He didn't get back from the cath lab until 10:30 pm! Dr Johnston is so awesome! He knew it would be a late night but was happy that it was someone that he knew so well. :) They also did a biopsy, (which later was said to be fine)

Saturday~ The came off the ventilator and was doing super! He was put on bi-pap that night just because we didn't have a definite plan. He looked great. Dr Law commented that all the hard work that he has done for months and Dr Johnston can make major improvements in less than hour! ;-)

Sunday~ Decided he really didn't need bi-pap but could go on at night for a while. He was off all day and looking good.

Monday~ Required bi-pap most of the day. Became febrile. Slept most of the day but did share a few smiles.

Tuesday~ Slept all day. Required bi-pap all day. Maybe an hour of awake time all day. Also febrile. Jen (his nurse) stripped his right chest tube and it drained a TON. It had stopped for a couple days. Wound Vac dressing was changed and they found out that the base of his incision is open and tunnels to the other wounds. (It has now been decided that the surgeons may want to take him back to the OR and look to make sure that there is not an area of infection somewhere in his chest wound. We are waiting for them to come and look and come up with a plan.)

Wednesday~ Was re-intubated (back on the ventilator) and was taken to IR. The left had stopped draining and they determined it was plugged. They changed out the chest tube but only got out 7 cc's. It appears that there is still an effusion for they chose to keep him on the ventilator overnight. He seemed very uncomfortable and irritable most of the day. Also febrile. Had an echo. Echo results showed that he had decreased heart function and was put back on Milrinone (@0.5). His echo scores also went up slightly. The blood clot in his left atrium and the blood clot around his cath site (power pic) are both unchanged.

Thursday~ Still on the ventilator, febrile, repeated echo and EKG. Today it was discussed that either he has some kind of infection (which we are still looking into) or low level rejection. They sent all the labs and now we wait to see what comes back and what the surgeons think. If there is no sign of infection or elevated counts that may signal infection, then they will start treating him for heart rejection. (The elevated counts from yesterdays echo could also be a sign of rejection.) They have repeated it but we haven't seen the results yet. He also had a change in his heart rhythm just a few minutes ago. Dr Baden said it kind of looked like a 'flutter'. His calcium was low and he just got that and his potassium is high so it could have been caused from either of those. We will watch it closely.

Please continue to pray for his health and that what ever presents it self can be treated easily. I don't know what the better option is. He hasn't seemed to make much progress lately.