Sunday, November 22, 2009

A week ALREADY.....are you KIDDING!?!?!?!

I am sorry that a whole week has passed since I updated. It has been a nutty week for sure.
So a quick update.....
Joshua went to OR on Tuesday, then Wednesday and then on Friday. I am sure that he is getting tired of the anesthesia. The right chest tube clogged and they wanted to place a left one. There was no left fluid so they just placed a PICC line in his chest and changed out the right tube. Wednesday he went to the cath lab. I am THRILLED to report that there is NO REJECTION!!! WHOOO HOOOO!!! This cath will take the place of his annual one that should take place in January. Thursday night his PICC like clotted off so they decided that he had to go back under and replace the PICC line with another one and try for a left drain again. The left drain has put out 85 cc's and the estimate was 75 so we are good there. Last night, however, the freaking right drain CLOGGED!!! ARE YOU KIDDING ME?? So, he will go NPO again tonight at midnight in care we have to put him under again to replace the right drain. *SIGH*
On the plus side. He is PEEING amazingly well. There was a point this week where it had stopped again and they were running out of ideas. If he didn't start to pee they were going to move him to the ICU to administer a drug to lower his blood pressure in the hopes that it would stop the effusion and 'warm' his kidneys up. Thankfully, the night before this was to happen he responded to the diuretic and has been peeing again. His BUN is the lowest it has ever been at 38 and his creatinine went from 1.0 to 0.5. HOORAY.
Today he looks super. His oxygen is actually off for the first time in 3 weeks. He is breathing easy and peeing well. Maybe.....JUST MAYBE.....if he stays stable like this we can go home sooner rather than later. We just need to get his meds all straightened out. Please pray that they don't need to replace that tube. I would love to see it just come out so that he can get out of the crib and play! He has been stuck in his bed for nearly a week and it itching to move around.
I would also like to report that he has begun to be interested....really interested ... in EATING! WHOOO HOOOO. He has been eating applesauce and doing well with it. Maybe tomorrow I will try something else. It is so nice to see him want to try different things. Hopefully he will keep it up.
Tomorrow is the start of a new week and Dr Kemna will be on service. Joshua is always much nicer to her than Dr Law. :-) (I think he likes to challenge his great mind!) So maybe we will be on a homeward bound trail.
Leah and Joshua

Sunday, November 15, 2009

Pee Pee Celebration!!

HE DID IT!!! After 4 long days our Joshua has finally peed! :)
And peed....and peed.....and peed. The good news is that he no longer looks all swollen like he could burst at any moment. The bad news is if he keeps peeing like he is now, he will dehydrate again. I tell you this kid has NO middle is all or nothing!
He has been very happy and playful all day long. We are trying to manage his electrolytes and med levels as best we can. He will go to the cath lab on Tuesday and if prayers are answered (mine anyways) we will be home for Thanksgiving....AS A FAMILY! (Well almost family, but I will happily take it.)

Thursday, November 12, 2009

Thursday....not much good news today

Joshua had a really rough night. He was up every couple hours crying and struggling to breathe. This morning we came in at 950 cc's positive for the day. He hardly peed at all again yesterday. Today he is swollen and grumpy. IR came in and unplugged the clot from his drain and pulled out another 200 cc's of fluid from his chest cavity. We are now at 640 since the drain went in. We did another ultrasound today and determined that he will need a tube placed on his left side as well. Dr Law is also requesting that they place a PICC line in his neck because we need to monitor his labs closely and this will allow them to get blood without poking him and blowing out the one good access point that we have. Sounds like that we will not be going home soon. :-(
Please pray that Joshua's little body heals fast so he can continue to move around and be happy. Being tethered to the bed at two years of age is not making him too happy. Also, please pray for strength and comfort for my kiddo's at home who are really missing us.

Tuesday, November 10, 2009

Tuesday (Change of plans)

In an effort to get us home sooner and because we feel we are loosing the diuretic battle, Joshua will go in for surgery today. He will go to IR (Interventional Radiology) and have a drain placed to get the fluid out of the area surrounding his lungs. He will go in about 2:30 pm and hopefully be out in about an hour or so. Please pray that all goes well and that the fluid is in place that they can safely tap into it and remove it. The hope is that we can remove the drain in a couple days and prepare to get home. I seem to be a little more antsy this time as Trevor's Birthday is Monday and I REALLY REALLY want to be there to celebrate with him this year. Of course, safety first, but if Joshua can safely go home then I will be THRILLED!

All in all Joshua is doing ok. He had increased work of breathing yesterday and required more oxygen overnight. He seems to be ok when he is up playing though.

Wednesday, November 4, 2009

Quick Update

Not too many changes today. They did another x-ray and it looks much better than yesterday even though I don't feel that he peed as much as he usually does. Strange. The viral FA came back negative so he is out of isolation! I hate that restriction. Dr Law is still leaning towards altitude as our problem. I think that could be why he is better when we get here but it still doesn't explain why he went from good to not good in one weekend. We have been home for the most part of 3 months without an issue. Still working on what it could be. He said next time this happens he is NOT having us drive 10 hours to come here to manage something that I can manage at home......hmmm....I think I said that before we came. :)
He continues to feel well. He would probably be better if he could get a decent nap in. Each time he falls asleep someone needs to come in and wake him up. GGGRRRRR. He keeps getting on his hands and knees in his crib today too. Family Life finally found us a floor mat so when he wakes up we can get down and play and practice this new position.
Sounds like we should be home by the weekend. It sounded sooner then I heard echo on Friday so I would assume that we should be getting ready to go. YIPPEE. I love to see everyone but I miss my kiddo's at home way more.

Shyla, Trevor and Trinity~ I love you as big as the sky and miss you.

Tuesday, November 3, 2009

Back Among Friends....

We are back at Seattle Children's. Joshua was admitted at 6 am this morning after a long drive in the car. Sunday he was satting around 88 and I put him on oxygen. I couldn't really pin-point any certain thing that was 'wrong' with him. I called Dr Law and we chatted about somethings that I could do and watch for. Monday moring he just wasn't looking good to me, so I called the pediatrician and took him right in. Dr Hardy and Dr Hall did their assessments and we looked at another echo and saw that the amount of fluid in his effusion had just about doubled from Friday to Monday. Dr Law was called and arrangements were made for us to go back out to Seattle.

I decided that driving at night when he was sleeping would be my best bet. Because I was super tired from lack of sleep and my check engine light has come on in the Envoy it was decided that my dad would drive us out. (He should be pulling into home now anytime....)

Joshua did great in the car and when we got here he was looking pretty good. (Go figure. Not that I mind that he looked better but it is REALLY hard to figure out what is wrong when his status changes so fast!) He had an awesome day playing and scooting around his crib. We got to see a lot of friendly faces of friends that we (we more being me) have missed. Joshua had an ultrasound and a repeat x-ray. There is fluid there and it is estimated to be around 120 cc's on the right. (There is about 6 on the left.) This is the same rough estimate that was there back in June. Dr Law has decided that he will be treated medically as opposed to physically. Meaning we will use medication to try and fix it versus tapping him and removing the fluid. The first thought is that we will trick his body by giving his Bumex to him at one time in the morning with the Diurell. The other change is the Sildenafil. We will increase the dose from 0.5ml 3 times a day to 1.6 mls 3 tomes a day. Dr Law says this medication will bring his body from Missoula elevation to sea level! Hopefully this does the trick. Part of the mystery is why on numerous occasions he looks pretty rough in Missoula but perks right up when we get here. (Could be all the attention from the nurses and staff?? He is an attention hound!)
We don't know how long we will be here but I will update and keep you all in the loop as to what is happening....the people that I know that are still following our favorite little Joshua peanut anyway! I hope that you are all doing well and enjoying the beautiful fall weather.
I decided to look back and see where we were a year ago. I didn't log anything for this particular date but I can tell you that we were in the room next door. I did post for the 4th and was reminded of the time I came back from dinner (I believe) to several people surrounding Joshua's bed and blood EVERYWHERE!! They were changing his dressing and his PICC line broke and he was bleeding out from the line. Because he was on Milrinone at that point in his life he got to take a trip back to the unit (CICU) until they did a surgery and repaired the line. Sheesh....that kid.

Here is a picture from 11-4-2008! Boy oh BOY has he grown this year. :)
This was taken while he was playing and exploring his crib. He acted like it was a whole new world! It was very fun to watch.

He was busy trying to get around the crib. He mastered the butt scoot as a way to get aroung backwards. Here is a shot of him deciding maybe he should change positions......Oh caught me. :)