Monday, May 18, 2009


Hit the floor and out the door!
That sounds like a nice little rhyme to sum things up! :)
Friday night Joshua was moved to the floor. He was perking up and they didn't feel like they needed to watch him so closely. Of course, I was pretty bummed because a few of the nurses that I REALLY wanted to see all worked the weekend and I just missed them. :(
I was in and out a lot on Friday. I still have Trinity and we have been really enjoying each other's company. I had to take my car to the shop in preparations to get her back to Shyla. (I used my mom's car to go get her.) Friday was B-E-A-U-T-I-F-U-L!! I am especially grateful because I had to walk back from the shop and back there to get my car. It ended up to be a huge mess and delayed parts but it is now fixed. :-) On my way out the door to go pick up my truck I saw the message light on the room phone and figured I might as well check it before I left....I do think I was stalling! I was THRILLED to hear that they had tickets to go see a concert. I was even MORE THRILLED when I was the first one there and was able to get tickets. Aunt Dorothy, Trinity and I went and saw Kelly Pickler and Taylor Swift at the Key Arena! We had an awesome time and the concert was super!
Saturday I came in to see Joshua and Dr Kemna came in and looked at him and said he looked great and could go home early in the week. YIPPEE.
Joshua is feeling much better. I will post some pics soon. He is just cutting his other front tooth and officially now has a 'big boy smile'. The days of gummy grins are now over. :( He still has a touch of a cold but isn't coughing much anymore and has completely stopped puking!
They have decided that if he handles the changes made to his diuretics yesterday that he can go with me back to the Ronald McDonald House tomorrow! I am so excited.
I am a bit saddened that today is my last day at APS but I am excited as well. Tomorrow when I wake up I will not have the anxiety of having to get right to work. I can go at my pace in the morning and just enjoy the preparations of getting Joshua out of the hospital without worrying about work and juggling tasks. Beginning tomorrow, I will be starting a new chapter in my book of life.

Thursday, May 14, 2009


Just wanted to give you all an update. I know that many of you check and wait for news. :)
Joshua is doing a little better. He has another tooth. I find it VERY INTERESTING that every single tooth that he has had come in has done so in the ICU. And for clarification he was not already in the ICU. Seems a little fishy to me......fever, diarrhea, sodium issues......NEW TEETH!!
They were going to move him to the floor today but decided against it. He is like a little pendulum.....he was fluid overloaded and wouldn't ya know
He is breathing a lot easier but still has a pretty good cough. Fevers seem to come and go and Tylenol isn't really working to cool him off. He is a little cranky and Dr Baden thinks that is more to do with a M-O-M issue. I haven't been up there a lot in the last few days and they think he misses me. Very bittersweet. We got some super snuggle time today and he was loving me with kisses. (He was also loving Andi last night. He attacked her!! He was trying to kiss her with both hands on her cheeks and wrestle the mask off her (he is still in isolation) it was awesome!!
I will update again soon. So far holding steady.

Tuesday, May 12, 2009

Quick Update

Hey Friends,
Sorry....I do know that I am a total slacker! I have been really busy wrapping up my last week of work, being a mom and playing! Trevor was here this weekend. We went to the beach and played in the sand for a bit on Saturday. The weather was beautiful! Then at the last minute I ran to Aberdeen and picked up Trinity. Since Joshua is in the ICU with 24 hour care and sedated I thought it would be a good time to do it. PLUS, I REALLY really needed something to take my mind off all the stress. Having her here has been a real blessing. We are having a blast.
Joshua is now extubated. :-) HOORAY! He is perking up but still is having some issues. Dr Baden thinks that he has bronchitis, but Dr Law isn't sure. So we are still watching that closely. He still needs the CT scan but we are waiting for kidneys to be strong enough to handle the contrast. He had an echo today but I have not heard the results. Dr Law is hoping to see enough improvement that he can determine the level of rejection. He had another steroid burst for rejection. :-( It was only rated at 1.5 and they don't usually treat until it is rated a 2 but because he can't handle the anti-rejection meds right now because of his kidneys the best thing to do was to burst him with steroids again. He seems to be getting over his Rhinovirus. Andi told me that he has developed a rash like redness on his knees and elbows tonight. It is hot to the touch. She called Reid (the fellow) and he was going to come and scope it out. I have no idea what this is but hopefully they can figure it out. *sigh* Always something with this little man.
Dr Law plans on keeping him in the ICU for a couple more days at least. My Aunt Dorothy from Alaska is coming down tomorrow to spend a couple weeks with me. I am very grateful to have the help and the company.

Friday, May 8, 2009

Friday X 2

Joshua is going to go to the cath lab today at 5 and then for the MRI right after.
Dr Law will be bedside with him through all procedures today; Echo, cath and MRI.
Dr Johnston will be doing the cath and Denise will be putting him under. So glad that they are willing to work so late on a Friday night! :) The tricky part is that with his kidneys not working too hot they will be limited on the amount of contrast that they can use. There is a series of measurements and tests that will be ran. I will update when I know more. He will have a CT scan either Sunday or Monday. That also requires a lot of dye so it can't be done today.
He will be going into the unit (CICU) after the tests today.


Quick Update:
Joshua isn't having a good day. He is very fluid positive to the point he can barely open his eyes. He is working hard to breathe and is more lethargic than yesterday. We are going to sedate him and do a very thorough echo at 2pm (maybe sooner). We have made him NPO in case he needs to go to the cath lab today.
He didn't respond to the diuretics last night and his BUN and creatinine (which measure kidney function) jumped up again ( BUN went from 63-68...I think that right and creatinine from .5 to .8...maybe even .4 to .8 Either way....bad news.). The bigger issue is why can't Joshua handle these things that we are trying to do for him. It is all pointing back to his cardiac function. Dr Law keeps using the term heart failure. :-(
Dr Law has talked to Dr Soriano and they are planning on doing a CT scan of his heart also. Hopefully these will give us some answers of what is going on.
What we do now; it is not CMV, a UTI or Influenza A. He did have a positive blood culture but we are hoping that it was contamination and have sent more blood with the AM labs to see. Not having a central line he would be at low risk for that but I suppose anything is possible.
Please pray for Joshua's health and comfort, the Dr's knowledge and mom's sanity!

Thursday, May 7, 2009

Not just a pit stop.....

Well friends,
Here we are again, puzzled. What started out as an electrolyte issue has again grown into something more. (What's new?) In the last couple days Joshua has been showing signs of infection. Either a cold or flu or something along those lines. He has spiked a fever of over 102, has green mucous in his throat and nose and throat diarrhea. They have tested him for RSV and Influenza A and both came back negative. They are doing a more extensive viral panel today. They is also concern that it may be something bronchial. They are watching him closely.
The worst of it is the concern of why his electrolytes get so out of whack with just minor changes. He should be so close to going home and shouldn't be so sensitive to med adjustments. So, it seems that there is more to the picture. This week he will have another echo. Next week he will probably have another cath. Depending on how he is feeling. We can't put him under if he is not feeling well unless it is an emergency. Coming off the ventilator if he is ill will be next to impossible with him. He is certainly headed for a cath but now remains a matter of when. Obviously the sooner the better. The main reason behind this investigation so to speak is the fact that Joshua's heart is not growing and it should be. His graft will grow with him. Dr Law said that there are 'kids' that had heart transplants 20 years ago and now their hearts are of adult size. We all know that Joshua has some interesting plumbing. Still having the the left SVC is creating some issues. He has basically an extra flow of blood. Instead of just making the loop through his heart like it should it is another little loop that it is following. It is basically a waste of resources. We need that blood to be cycling through his heart. His heart function has never been perfect. He has the same diastolic dysfunction that he has had. Drugs aren't seeming to make it much better. So after the echo and the cath they will get together and determine the future plan for Joshua. It is looking probable that he may need to undergo another open heart surgery. There is concern that there is some kind of scar tissue around his heart, probably from the seratia infection after transplant, that is prohibiting his heart from growing. Dr Law explained it along the lines of a sack around his heart. They will go in and see if they can remove it.
So, in a nutshell we are not as close to going home as we were last week. After the events of this week on the home front I am ok with that. The inspector came out to the house and it is worse that we had thought. The hot water has broken in the time from when I was home last at Thanksgiving and has caused even more water damage to my house. My dad, father-in-law and my uncle are working on getting that situation remedied but there is still the issue of the water damage to our home. I am waiting to hear what the insurance company says. My gut tells me that they will probably total my home and call it a complete loss. Please pray that if they do that it is enough to pay off the existing mortgage so I won't have to make a house payment on a house I don't have. I don't know exactly what we are going to do if this happens. Being that I no longer have a job I will not be able to secure financing on a new home. I know that God has a plan for us and I know that I need to be patient and just see what it is.
Please keep Joshua in your prayers. Looks like his road will be taking a little unexpected detour.
Love and blessings,

Tuesday, May 5, 2009

*sigh* Monday's are not my favorite lately

So here we are Monday again.....and Joshua is BACK in the hospital.
We had to go get labs today and we were asked to stop in at clinic again today to follow up from last weeks little admission. They looked at him on Friday too and just wanted to keep a close eye on him. He had a great weekend. My mom and Trevor were here to pick up my dad and drop off Theresa for the week. Joshua LOVED seeing them and played with Trevor. Trevor decided that he was going to sleep on the floor by Joshua's crib last night. Long after Trevor fell asleep Joshua was still there smiling and blowing brother kisses! It was the best. :)
Anyway, we saw Dr Law (for the first time since our 4-10 discharge. (It was very nice to see him again.) Well Joshua appeared a little wet again. We had decreased his diuretics again on Friday and upped his Cyclo. He was still producing tears and had a wet mouth so even though his wet diapers took a little decrease I wasn't too worried. He was acting just fine. Dr Law also wanted an xray. He told me to go get labs, then the xray and then come back to the clinic so he could tell me the results. Well his xray was maybe a smidgen better but nothing to write home about. Dr Law decided (at that point) to write Joshua a prescription for Sodium and then follow up with us tomorrow. Well in the time that he had finished the script and got to the room we were in the labs had came back...THANK GOD! I knew by the look on Dr Law's face the news was not good and I shouldn't expect to go anywhere any time too soon. I joked with him about knowing before he opened his mouth. A talent that comes from seeing the same doctor every single day for several months! :) The labs showed that his sodium was low (125), BUN (mid to high 80's...I can't remember exact #) and creatin (0.7) were up, even more from last week. This combination puts Joshua at very high risk for seizures and renal failure, so he was admitted. Dr Law didn't know what the immediate plan was going to be. He did say that we would stop the Cyclo because heart rejection at this point in time was the least of the worries. If he starts to reject we will deal with that later. He changed the diuretics and changed some of the heart meds. He is going to go up on the Diltiizem, stopping the Captoprill and starting doing something with IV fluids.
Please keep Joshua in your prayers as we work through all of this. Very scary stuff.