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.
Blessings,
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 ground....it 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.
Blessings,
Leah

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 mom....you caught me. :)


Thursday, October 22, 2009

October's Dr Appointment Update!

We just made it back from Seattle and Joshua is doing GREAT! He is the best he has ever been and it seems that his heart is starting to function better! The news that I was most excited about is we won't have to go to Seattle monthly anymore! We will now go every other month and we get to see Dr Hardy here in Missoula on the opposite month! No more weekly appointments here in Missoula....YIPPEE. I am excited that Joshua has gotten to this point. What a milestone.

Joshua has been doing SO SO good. He has started to butt-scoot across the floor and is picking up new words all the time. It is so fun to watch him grow and learn. He really enjoys picking on his older brother and pulling Trinity's hair! Now I am not one to rush my children when it comes to growing up BUT he can grow out of this stage QUICKLY with no complaints from me! :)

It absolutely amazes me how far he has come in the course of the last several months! What a miracle baby (toddler) he is! We stopped by the ICU when we were in Seattle for clinic. Sadly, we didn't get to see everyone that we would have liked BUT really REALLY enjoyed seeing the ones that we did. They were all pretty surprised on how much he has changed. Dr. Mazor told me that he probably wouldn't even have recognized him....if he wasn't with his mom. I feel like sometime in the last month he just turned into a BIG boy.

Monday, September 21, 2009

Wowsers!

I know that I am really REALLY going to regret not staying up on Joshua's blog for the last few months.
I must say that being home isn't exactly what I had imagined :-( I am still working hard to get my house in order and getting acclimated to being home after being gone for so long. I haven't been using my computer at all so....well....if I don't get on the computer I don't get this updated. BAD LEAH!
I will work harder about making sure to get updates loaded. I SWEAR!
So, our little Joshua is a rock star! Just in case you were having some doubts. ;-) He is still a behind as far as developmental issues go but he is trying really hard. His vocabulary is building and he is starting to get interested in moving and eating. Slowly but surely...he will get there.
He is as cute as ever and if course still a little tricky to figure out. He has been back and forth between Missoula and Seattle every 3 weeks. The only exception to this is this month. He made it the WHOLE 4 weeks from last discharge to his clinic follow up. We will be taking off to Seattle tomorrow and I am planning on just coming back home on Wednesday. Of course, this is MY plan but I am constantly reminded that it is not I who is in control, but the Lord.
Joshua is still battling with the chest effusions. We have started him on oxygen at night to see if maybe that will help. The thought is maybe the elevation of where we are is affecting him. He seems to be tolerating it pretty well.
I WILL update you after the appointment with the latest statistics.
I hope this finds you all well. Thanks for caring.
Leah
Joshua (like my other kiddo's) has really taken a liking to 'Bob Bob' (Spongebob). I was putting him in his PJ's one night and he kept pointing to the orange cowboy hats on them and questionably saying 'Bob Bob'. His brother has Spongebob pajamas so I decided that Joshua needed a pair also. He was SO happy to have them on. He woke up in the middle of the night and pulled his leg all the way up to his face, focused, said 'Bob Bob' and went back to sleep!! I thought it was so cute that he wanted to make sure that he was still in them. I love that he knows what he likes. Reminds me that despite everything....he is in ways, a typical almost 2 year old. ( Can you believe it??)

When we were in Seattle last I decided to get myself a tent camper. I have been looking at them for quite sometime. I was REALLY itching to get it out before the summer was up. At the end of August we took the kids out. We loaded up and headed to Kalispell. We ended up 'camping' out at my Aunt and Uncle's house. They have a little piece of heaven out by the Lost Prairie Airport. We had a blast being able to play at the lake and ride the 4 wheelers while still having the safety net of the house in case we needed it for Joshua. It was super nice to spend sometime up at their house with them. I have missed it so much! Even after 4 days they said we could come back. :) Joshua will need to work on his camping skills. I discovered that he is actually afraid of the dark. I had never thought about it but darkness (complete darkness) is something that he has never really experienced. We were in the camper and after all the lights were off his nighttime chatter started to sound a little distressed to I reached for my little mini flashlight. He pulled it from my hands and shined it straight into his eyes, holding it tight with both hands. So....we slept with the lights on the rest of the trip. He also won't stay under the darn blankets. I am going to have to invest in some blanket sleepers for him I think.

Monday, August 3, 2009

I am so so sorry!

We made it home! It has been incredibly busy around here and I have not had time to get on the computer. I can't believe that I have gone so long without updating! UGH.
Of course, now that I have the time my laptop battery is about dead and I can't find the cord. :( I will get back on soon and post some pictures. I have lots of things that I want to document.
Joshua is doing great. He did have to go back to Seattle but it was only for a week. We are back home now. He is getting so strong and playful. I love having him home!! He now sits all by himself and is slowly building a vocabulary. He says momma, dada, grampa and bye bye. :)
I will post more soon.
Love and blessing to you all!

Friday, June 26, 2009

Friday June 26th

Thirteen months ago we brought Joshua over for a pre-glenn cath. I were expecting to stay 2 weeks, 4 at the most. I had no idea the path that our lives were going to go when we made that trip.
This last year has really been something else! I have developed relationships and made friends that I hope last the rest of our lives. I have been shaped as a person by the people that have touched my life this last year. I don't know how to thank all of the people that reached out to me and our family and supported us through the trials that we endured. I don't know how to thank the doctors, nurses and staff that took care of Joshua and even more importantly truly cared for him. I don't know how to thank all of you that follow Joshua and our family and offer your prayers and support. I feel completely blessed! Please know that I THANK YOU from the bottom of my heart and pray that you lives will be enriched like you have enriched ours.
This year has also brought immense heartache. I have shed more tears than a person should in a life time. I have never been so scared that I would have to say goodbye to one of my children before I even really knew them. I have seen more parents and families leave the hospital with empty arms and broken hearts than I can even fathom.
I felt completely and totally blessed when Joshua was discharged and got to leave the hospital with my baby. There were days that I didn't think that would become a reality. Today I feel overwhelmed with joy as I get to tell you all that not only did I get to take my child and leave the hospital, I get to take my child and leave Seattle! Yes friends, we get to go HOME! HOME TO MONTANA! I am so excited to take him to the home that I know he doesn't remember but the place that he has always belonged, share him with family and dear friends who have met him but a time or two and introduce my miracle baby to the ones that he has never met. I am so grateful that this has become a reality! But I also admit that this is bittersweet. By going home I am leaving behind people that really mean a lot to me. I hope that we can continue to be friends even though there is distance between us. My hope is that Joshua will grow up and know that he had 2 families that loved him. The one that he was born into and the one that embraced him with open arms and showed him love when the other family had to be so far away.

We will be taking off for Montana (HOME) this weekend. I want to say that I am sorry that we are ducking out without saying goodbye to those of you here in Seattle. Please do not take this personally. I really REALLY want to but Joshua has been sick and I don't want to be spreading bugs! We will be back for appointments on the 22nd of July. We will be coming to Seattle for a whole week and will make our 'goodbye' rounds then.

I will continue to update the blog with Joshua's progress and the craziness that is our life!
Blessing and love to each of you!

Tuesday, June 23, 2009

Over due update

Well the verdict is in. (Or better yet was in late last week.)
Joshua had Rhinovirus (common cold) and para influenza 3. He has really perked up and was released from the hospital late Sunday night. I tell you....it was SO hard to not see him for a whole week! It was shear misery. I am very happy to have both my little guys right here with me. :)
The first night Joshua was home he was up about every 1/2 hour throwing up or crying. It was really rough considering that Trevor spoiled me all week and let me sleep in until early afternoon. It was pretty nice, but now I owe him. ;-)
Last night was much better. He slept pretty well and only hurled a couple times. I didn't have to change the bedding repeatedly like I did the night prior.
We laid pretty low yesterday and today we took advantage of the sunshine and went to Matthew's beach. I can't tell you how much I love being just a couple minutes away from the lake! The weather was mild and breezy but Trevor took a dip anyways....in his jeans. Joshua fell asleep as soon as he hit the beach blanket. Next time we will be more prepared; swim suit, TOWEL, beach toys and toys for Joshua. And an anchor for the umbrella may not be a bad idea. The first gust of wind picked up the darn thing (which is really big) and blew it right into a group of day camp kids. UGH. I spent the rest of the time holding it down.
Here a couple of pictures to document our day.
Thanks for checking in on us!
Here is Joshua immediately after hitting the blanket.

Trevor enjoying a dip in Lake Washington. (The kids in yellow shirts would be the victims of the 'umbrella incident'. There were about 25 of them all gathered in a 'huddle' when the umbrella attacked them. YIKES!
Because we were so prepared (NOT), Joshua decided to play with Trevor's french fry box. There happened to be a couple left in the box and one fell out and landed across his upper lip, like a mustache! I was trying to get a picture of it before it fell.
This was the result! He does NOT and I repeat DOES NOT like to be laughed at. Not even at, he just doesn't like you to laugh. The result is this face, HUGE crocodile tears and WAILING! Then you have to laugh at him which makes everything even more dramatic. It is so funny. As cute (in a sick little way) as this is....I hope he gets over it. We are a family that enjoys laughter. If he doesn't want to be the target of this laughter he needs to stop this action! He has been doing this for quite a while now. There was even a night that we rented Mall Cop and he was in his crib. There was a funny part and when my mom and I started laughing Joshua turned on the water works. My reply was "dude, its a comedy....deal with it!"


Thursday, June 18, 2009

2 weeks.....how do I loose the time!

Well I guess a lot has happened in the last two weeks.
I will start backwards so that I can so this without missing too much. (I hope)
First....Joshua is back in the hospital. I had to admit him on Monday night. He threw up a lot on Monday morning and by after noon was running a fever of 38.5 (101.5). I called and Dr Law wanted him to come to the ER to be seen and admitted. He became pretty lethargic in the ER and hit 39.9 (103.8). He was pretty miserable. By the time he went to the room he was happy and back to normal. They took blood, urine, poop and snot and found nothing alarming. Nothing is really apparent as to what could be wrong. He did spike again to 39.3 this morning. He is in isolation.
On another note....Trevor is here with me. :) I have missed him so much. It is making this mommy thing pretty tricky because I can't have Trevor at the hospital so therefor I do not get to see Joshua. :( UGH.
Yesterday, Trevor and I did get to go on a Sailing Heritage Cruise in Lake Union. It was very nice. It was scheduled for Garrison Family of 3 but Joshua bailed on us!
Sunday, (when Joshua was still feeling good....REALLY GOOD) I called Dr Law and asked for permission to take him in public. Dr Law said YES and Joshua joined us in a public building for the first time in over a year. We went to the Seattle Aquarium. Trinity's dad, grandma and uncle came to Seattle to pick her up. I thought that it would be somewhere nice to go since the weather looked a little iffy. Joshua LOVED it! He was smiling the whole time. He did fall asleep very quickly after we left.
I had picked up the girls last week and they spent a week with me at the house. It was so nice. AND for ONE WHOLE WEEKEND I had ALL the kiddo's TOGETHER!!! WHOO HOOO
We had a real nice time.
I will update more on Joshua as I find out. We are waiting for enhanced nasal wash results to come back. We did an enhanced panel to see if we could find something.
Week in review....through pictures: (I will try and get an album put together because there were a lot of great pics)

He sported this smile A LOT during the outing to the Aquarium



Little Miss Jellyfish.....(although it reminds me more of an ovary!)

We didn't get one where all of us were looking at grandma or smiling!



My little captain got to steer the boat 3 times! He did a great job even with the distraction of the water planes coming and going.

Sunday, June 7, 2009

Laughter is the BEST medicine! :)

I posted a new Video at the bottom of the page.
** Be sure to pause the music before you start the video :)

Friday, June 5, 2009

Pictures

It is so nice to have access to my own computer again. :) Here are some pics. I have some older ones I will try and post later. These are from the last couple days. He is getting so BIG!



Wednesday, June 3, 2009

Holy Smokes!

I am so sorry for keeping you all in the dark! It has been a long and busy couple weeks.
Let me bring you up to date with our little man. He is in the hospital right now but we are actually discharging in a few minutes. :) He was admitted on Friday with fluid issues and he actually required oxygen so they kept him. He was satting in the mid to high 80's. Kelly noticed he had Kool-aid lips right off.....I didn't see them. YIKES.
He had his cath on Monday and it went pretty well. They put a block in the SVC that is not connected to his heart. Hopefully that will help with some of the issues. We don't really know yet. They also took a biopsy and today I was informed me that there is ZERO cellular rejection! Of course, we still can't figure out exactly what is going on with Joshua's heart but we are looking into many things and praying for an answer. It has pretty much come down to watching and waiting for now.
My dear friend Darla was here with me for a few days. She just went home yesterday. It was so nice to have her here with me and get caught up. Of course Joshua ended up in the hospital the same day that I had to pick her up from the airport so needless to say it was an interesting time! We miss her already....and certainly wish that there were many less miles separating us!
My Aunt Dorothy also went home....a week ago today. It was great having her here and helping me out! I also took Trinity back to Shyla on the same day. It was a long tiring day. I did however really enjoy spending some time with our oldest kiddo who seems ever so far away. But I have to admit it seems really weird not having TD around! You would think that having a two year old around would be a pain but it was VERY GOOD for my soul! I miss her.
I am counting down the days until Trevor gets here! He gets out of school on the 11th and then he will come and stay with me until we get to go home. I can't believe that I missed his WHOLE first grade year....what a bummer!
And...the house....UGH. They decided not to cover any of the damage because they said it was negligence that my hot water heater leaked for a year. They OBVIOUSLY did not listen to a darn thing that I said. The hot water heater was NOT the initial problem! UGH. I guess I am glad that they came out because that stupid thing would be leaking still if they didn't. It was only leaking for a month.....I can say this with certainty because now my power bill is back down to $130 /mo vs the $320 that it was the month prior! Oh well.....
I am sorry for not updating sooner. I am now hooked back up and will be better...I PROMISE!!

Monday, May 18, 2009

Update

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

Thursday

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 it...today....dehydrated.
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.
Blessings,
Leah

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.

Friday

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,
Leah

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.
Blessings,
Leah

Wednesday, April 29, 2009

Wednesday

Joshua looks great today! He is breathing easy and seems to be in great spirits! :) He had an echo this morning and we are waiting for Dr. Kemna to call us with the results. We start once a week appointments so he will not have an actual clinic appointment until next Wednesday. He does need to have labs drawn on Friday so we will swing down to the clinic and have them eyeball Joshua and make sure he looks good. They also plan to send us home with some Metolazone, so they can call and tell me to one time dose him if his fluids decide to creep up like this again!
We don't have official word that they are cutting him loose yet but it is looking promising!
I will update you all again when we make it out and back to the house. Don't expect anything until late tonight. :)

Monday

Hello friends!~
Well some good and bad news. Joshua had an echo on Monday and it seemed to look just fine! PRAISE THE LORD! There were no significant changes and it doesn't appear that he is in rejection. We are still waiting for his labs to come back so that we can see his Cyclosporine level. We are hoping that it is not low. His BNO is up a little but that can be cause by other things as well.
Sunday I had a total DUMB moment. I was giving Joshua his meds and inadvertently added one med into the bottle of another! I had to call Dr B and ask if I ruined it or if he thought that I could continue to use it. The consensus was that it was such a small amount, I put the Dilaudid into the Ativan bottle, we should be fine. We got to talking about Joshua and I had told him that he had been having a little more vomiting than usual but nothing that I was overly concerned about. We started talking about the amount of fluids that I have been giving to him (which had lessened over the course of a couple days) and the fact that his last set of labs appeared to show that he was rather dry. The conclusion, that we would go from 3 doses of Bumex (diuretic) to 2. Sounded good when we talked about all the numbers. :) Why is it that everything seems to look better on paper? So, he had 3 doses on Sunday. I have him his midnight dose and not another one until noon the next day. Well in the meantime his lungs got a little junky. I could hear something rattling and thought that MAYBE it was just in his throat. After a little mommy chest PT and some induced coughing (by touching the back of his tongue) I felt defeated. I could still hear something and couldn't tell now where the 'noise' was originating from. I called the Transplant Coordinator and asked if when we came in for the echo that afternoon, if they could listen to Joshua's lungs and let me know what they thought. He had a slight increase in breathing, it was a little faster with little flaring. Right before we went into the echo Joshua threw up a HUGE amount of mucous, mainly out of his nose! EWWW. So we went to his echo and by this time he is really retracting, flaring and head bobbing. Jason had told Dr Kemna that I had called and she agreed to see us right after the echo. GREAT SERVICE! :) So needless to day by the time that she saw him he was in pretty bad shape. She said had this happened at 8 am she would have told us to go back to the house and come back at 4 but because it was so late she "didn't feel comfortable sending us on our merry way." Maybe she missed the fact that both of us were covered in baby puke and it would have been hard to be happy in the best of circumstances! So needless to say, he was admitted back in the hospital.
He spent the night and was given meds to dry him out a little and we got to see a few of our friends but we would have liked to have seen a couple more! We can sneak in during the day to see our nurse friends and doctors but not so much at night. We miss them the most!
He required a little oxygen and they want repeat labs and an echo so we are going to stay one more night and then should be able to go back to the house.
I am thinking that they were really taking pity on me having to bring Joshua back! The resident was joking with the doctors at rounds telling them how much she knew I missed Montana and that we really needed to get him fixed up and out the door as soon as possible. Dr Kemna just looked at me and asked if we had talked at all about when we can go home. Kelly said that she had mentioned to me a month. Which was true but they also thought that we would be here a month at another visit.....A YEAR AGO! I have learned to not get to psyched about future events. :) Well they told me today that they were feeling confident, VERY CONFIDENT, that I would be taking my little son back home to Montana to join the rest of our family BEFORE JUNE!!!! YYYYIIIIIIPPPPPPEEEEEEEE!!!! I am so thrilled.
Of course we will be on major house restrictions and won't be able to see anyone for a while but hey.....we will be in town!
I also want to send out a HUGE THANK YOU for all of you who helped put together the fundraiser for Joshua last weekend and everyone who came out and showed their support! Aunt Sharon, you have NO IDEA how much we appreciated this and how thankful we are!! You did a GREAT job! We are going to be having some major financial issues over the next year (or so) with me loosing my job, James being in treatment, the issues that we are dealing with regarding water damage to our house and getting it ready for Joshua to be there. This money will be put aside for his medication co-pay (which this month was over $650) and the cobra payment so that I can keep him insured as long as I can. THANK YOU THANK YOU THANK YOU.
Blessings,
Leah for the Garrison Family

Wednesday, April 22, 2009

10 days later

And where have we been you ask?? *sigh*
We have been around. It has been really busy so I am sorry that I haven't updated. The first weekend that we were home it was Easter and Trevor, my parents and my Aunt were all here. Joshua slept the WHOLE time. It was later that I discovered that when we removed the wound vac....we didn't make adjustments to his meds. He was completely snowed. I made a wien on Monday and he perked right back up. We had also changed his formula so I guess he wasn't always sleeping. He woke up to puke! UGH. It was pretty rough. That combined with meds every 2 hours....I was WIPED.
We now have the med schedule under control and he is feeling so much better. I am still tired as I have to get up every 4 hours at night and I have been under a lot of stress with work. Only a few more weeks left. I am kind of looking forward to it. Joshua has several appointments each week so I feel like we are always on the go.

I received a call today from the Transplant Coordinator and we do have to go back in on Monday for a repeat echo. This last one from Monday has changed so they want to take a look and see what it going on. It appears to be some thickening of the walls of his heart. They have not ruled out echo tech error so I will let you know next week. He had blood work and all seems to be in order. His cyclo level is still 230 and needs to be 250 to 300 so we will go up again. Not sure why the last increase didn't have any kind of impact on his level. Always a mystery this kid!
A week in review:
*Joshua can roll over to his tummy. (Although not always thrilled once he gets there)
*He now says "mama" :-) Usually when he is really upset...it sounds more sad than anything!
*He took his first car ride in almost a year. He LOVED it.
*Joshua does NOT like you to laugh with (or at) him. A couple times I have busted up and it is usually followed by a HUGE frown and dramatic crocodile tears.
*Joshua has a Little People train that has a person, a giraffe and a tiger. I couldn't think of a giraffe noise to I made kissing noises with it. Grandpa likes to make the tiger growl and "eat" his arms and cheeks. Joshua likes to make the tiger growl and likes to make the giraffe kiss the tiger. :)

Joshua is getting so strong and playful. It is fun to watch him 'turning' into a toddler. He has been eating puree's (mostly tastes) and can have honey thick formula. He showed some signs of silent aspiration at his swallow study. We are working hard to get him to enjoy eating. I am glad to report that he is over his fear of spoons!

Here are some pics to enjoy.
We went on an evening walk to get some take out supper.

This is after a full hour of PT with Keren. She really worked him out! He played HARD. He made it 10 minutes before he fell asleep.

Cruising in the car. I think he looks SO big in his car seat.

Sunday, April 12, 2009

Good Friday~ AWESOME FRIDAY!

This is just a real quick update to let you know that JOSHUA IS OUT OF THE HOSPITAL!! I can hardly believe it. The official count was 315 days.
It was hard to leave all the awesome nurses, doctors and staff who have become our friends and extended family over the last year. It was tearful even though I know that we will be going back several times a week! :) I will never be able to show my appreciation for each of these HERO'S! They each played a role in saving my little baby and they changed my life. I am forever grateful.

Wednesday, April 8, 2009

No more PICC line

He came out of the IR without any issues. I still have not talked to anyone to see if they successfully got the clot all the way out. Hope to hear something!
He has a new Mic-Key button today instead of the big ol'G Tube. I will post a pic a little later. I have to go report in for my CPR class....yes....I am a serious procrastinator!

Wednesday

Hey friends!
Sorry I haven't updated much. It has been really REALLY busy.
Joshua is in the IR right now getting his new G Button and his PICC line REMOVED! WHOO HOO! It was supposed to happen yesterday but we have been having some issues with residents and scheduling! UGH. But all is well he is in there now. :)
I am taking the CPR class tonight and we should do our 24 hour care tomorrow.
Dr Law asked me how Friday sounds.....to go to the house!!! It sounds pretty darn wonderful to me!! :-)
Joshua still isn't "perfect", we are having some issues with his heart rate and throwing up but we figure these are going to take a little longer to work out so there is no reason why we can't manage it from clinic.
Joshua has been chatting up a storm the last couple days. He has also hit the stage that younger babes to where they want to pull your hands (and face) down to their mouth to either taste or bite you! He thinks it is pretty fun stuff. I am SO excited to get him out of here and into an environment that is easier to play in. No more wires, monitors or hoses!
I think that the hardest thing for both of is going to be that for the first time in a whole year we will not be surrounded by the people that have become our friends. It will just be us. I am sure that we will both love coming in for clinic and seeing familiar faces.
I will update when he comes back from IR.

Friday, April 3, 2009

FRIDAY FRIDAY FRIDAY

This could very well be our LAST FRIDAY POST FROM THE HOSPITAL!! Can you believe it!! :) WHOOO HOOOO
We are on schedule to be out of here Wednesday or Thursday morning! I can't believe it. Little Joshua could very well be spending his second Easter at "home". (Home this year will be Ronald McDonald House...but it will not be the hospital!) And for the record....he was home last year for Easter too....dressed up in a bunny outfit of course! :)
It is amazing to me that we are actually at this point. I can hardly believe it. As my friend Angie said earlier, he will now be my boy and not someone's assignment. True, oh so true! I can hardly wait. I know it will be a lot of work and this month will be rough trying to wrap up work and learn to care for him but it is going to be ok. I am sure that it will breeze right on by. I am ready.
Trevor has really enjoyed entertaining Joshua during his Spring Break. I have a WONDERFUL video of belly laughing that I will try and YouTube. It is awesome andCheck Spelling I would love to share it.
I don't know that he really understands what all of this means. When I told him last night that we would be taking him out of the hospital he immediately started quizzing me about what I would do if something went wrong. I think he is a little worried but I know he will be at ease next weekend when he sees him in more of a "home" environment. Trevor is my overly sensitive, concerned child! He is a HUGE help and I know he will like to have more of a role in tending to him.
I think that Joshua will have a little bit of a rough transition. He LOVES to entertain and flirt with all the staff. He will have to adjust to just me for a bit and clinic visits. Hopefully he will keep the same spunk and attitude. :) Plus, it will be much easier for me to be silly and act like an idiot when I am not around everyone!

Thursday, April 2, 2009

small change of plans

Joshua did not go to the IR today. It has been rescheduled. There was a miscommunication nightmare. Poor kids has been NPO since 4 am and it is now 11:30! I will hope to have some more info when they round soon. Sheesh!
He did have an EKG and another echo this morning. His G Tube is TOTALLY clogged and he won't take a bottle today. He is however looking pretty awesome in big boy clothes!
I don't have my cord so I will add the picture later today.

Wednesday, April 1, 2009

Do you ever feel like.....

you went to bed and woke up at a totally different point in your life?? Maybe it is just me. When I went to bed last night I was consumed with thoughts of what I needed to get done for work and fitting in something fun to do with Trevor for spring break. That lasted....well...until rounds.
Then I thought I heard something like we have a clinic scheduled on Wednesday but I didn't quite catch it so I asked that Kelly, the transplant coordinator, be called back in later for clarification. I am glad to report that I am NOT loosing my mind. I did indeed hear that! If all goes well they are planning on letting Joshua make the transition to the Ronald McDonald House next Wednesday. Yep...that is ONE WEEK from today. Friday is slated as the back up date! I am so overwhelmed I can barely put a thought together to type this email and thank goodness for spellchecker!

Joshua will go to IR tomorrow to have his GJ Tube replaced with a G Button! :) He will also have his PICC line REMOVED!! He has been sporting that for almost a year! He goes in at 9 am so please be praying that it all goes smoothly! He does have that clot at the end of the PICC line that will have to be dealt with. Kirby (from IR) said that sometimes they can use TPA and be successful in pulling the clot out. I am voting for that option!

My mom will be bringing Theresa (my aunt) over on Friday so that we can train her on how to take care of Joshua. She will be the back up in case something happens to me. I am feeling very blessed that this was an option. She will have to be here for a week and I was worried about being able to pull it off on such short notice.
We will have to come back and forth to Seattle for the 1st year on a bi-monthly and monthly basis. Somethings can be looked at in Missoula but they want him to come to clinic here in addition to seeing the cardiologist and pediatrician in Missoula. They said that I could possibly come home sooner if I wanted to but I would have to come here weekly. I haven't put a lot of thought into that yet but I am glad to know that it is an option. I would do 3 days in Seattle and 4 in Missoula.

Some of you may know this already but as of May 18th I will no longer be employed. I have worked for this company for 10 1/2 years so this is going to be a BIG adjustment. They have decided to close down the Missoula location and my job will be relocated to New York. Part of me is sad and the other part is relieved. It is nothing more than affirmation to me that the Lord is in complete control! There is no way that I would be able to work and take care of Joshua in the way that he needs and deserves. This took the decision away from me. I don't know what my future holds as far as work goes. I will have to do something because the bills do need to get paid! But I will be allowed sometime to think about that. I know that the Lord will show me what I am supposed to do.

The timing in all of this will also correspond with Trevor's summer vacation so we will be able to come back and forth together with no worries. The Lord is AWESOME!


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 record....today 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 today....it is ok to go out and have fun. Trevor needs his mommy too! Thanks Dr Kemna....now 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.

Ok....so 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 needs...like 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.....


THE ORDERS ARE IN


JOSHUA IS GOING TO THE FLOOR!!

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

Extubation.......again

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 laughed...it 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!
Leah

Tuesday, March 10, 2009

Trevor

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!
Mommy

***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."

OWEN'S MOMMY!

I tried to email you and it bounced back to me.
My email address is leahgarfield@vzw.blackberry.net or leahgarfield2@hotmail.com.
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...is 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 now...so 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.
Leah

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.

Friday, February 27, 2009

Ending the week (already) update

So hear I am apologizing again for not being more on the ball with the blog lately!
Joshua has had a real mix of good days and bad days lately. Last Saturday he had a GREAT day! Brooke was here and was playing with him. He was laughing, smiling and even sitting up (with her help of course). I knew that she was here that morning so I chose to sleep in and missed a lot of the fun but she filled me in on the details. :-) What was super great was that the doctor's got to see him be happy and smiley.

We don't know what caused what but we do know that over the course of a day or so he had bad diarrhea and was SO irritable! He ended up a little dehydrated with elevated sodium...again. He was awake whimpering and waving his hands around for most of about 32 hours. :-( No amount of drugs seemed to help and was SO SO SO unhappy. (For the record: over the course of the days previous he had his Ativan changed from IV to PO, a fever of 104 and was also getting some more teeth!) Then he finally fell asleep and slept for a few days straight. Mean while we had to hold his diuretics because it is dangerous to bring the sodium levels down too fast. He retained a ton of fluid and required some additional help. Yesterday we had to put him back on the ventilator. He immediately started to look a little better and his heart rate has been very good in the low 100's - 120. When they went to intubate him Johnna looked quite 'puzzled' as she was obviously working something out in her head. She mumbled 'no' after asking for suction and then asked for a Kleenex. Then she just shook her head again and reached into the back of his throat. She pulled out a large marble sized ball of mucous! EEEWWWW!!! No wonder he was having some issues breathing and had a little lower sats. It also helps explain the weird croaky cry he had developed. And did I say EEEWWW. Becky proceeded later in the day to get another large gob out, even though it wasn't as impressive as Johnna's!

He also had to have 2 bi-lateral chest tubes placed (again) to remove the fluid that developed in his pleural space. IR came into the room and did them again under ultrasound.
On Tuesday IR was also in here and they drained 15 cc's of blood from his hematoma. It is smaller now and even softer. It doesn't appear to be infected but does have a large clot it in.
He had an echo on Monday and his heart function appears to be the same. The clot was a little lighter in color so maybe it is maturing.
He will be going into the cath lab here in the next hour to have a biopsy done to check for rejection and to have his PA's and SVC checked out. The thought is that maybe they need ballooned or stinted so that he can get optimal blood flow through them. This should improve his heart function.
Oh, we also changed rooms the other day. We are now in 4273-1. His room mate is the cutest little gal EVER! He is sharing a room with Miss Karlee! It has been nice to finally get to know her mom Devon. Although, after a little mix up with the UC desk and her having to sit in the waiting room for 20 minutes....she may not think the same! :-( UGH.
Here are some pics from this last week.

Sporting his bipap mask

This is his hematoma (outlined with a Sharpie!)

And this was taken a little while ago before he fell asleep.

Wednesday, February 18, 2009

Video

Towards the bottom of the page :)

What a day

First an update on our little neighbor. He had another very rough day. He did go into cardiac arrest and crashed onto ECMO. I have talked breifly with Heather tonight and she told me that they took him back for a CT scan. They are concerned that something may have happened to his brain. Please continue to lift them all up in prayer.

I experienced some guilt today. While Daniel and his family were having such a rough day, Joshua was brightening mine up.

Today I got smiles and a few '150 kisses'! He talked to Grandma Betty on the phone and was pretty playful for the most part today. I am sure that it is because Brooke was his nurse today! I don't know how you could have a bad day with her around. She is awesome.
















PRAYER REQUEST

Please keep Daniel and his family in your prayers today. I am not sure the details but I do know that his room has been very busy tonight. His mommy and daddy were here a few minutes ago and are visibly upset. I don't know the details right now but will try and get an update from Heather tomorrow.

**I was just told that they are going to be putting Daniel on ECMO. Please pray that this provides the rest that his body needs to recoup.
***3 am update~ they are NOT putting Daniel on ECMO. He did code but he is now stable. He is, however, rejecting his heart. Heather said that they are going to wipe out his immune system (T CELLS) and that his body could stop rejecting. Please pray for health and wisdom for his parents as they fear making him sick.

Rejection is a natural process for these kiddo's, the hope is that is only minor. In some cases it is more severe. There are 5 kids in the ICU right now that are post transplant (since January 1st) and 3 more that I know of that are on the floor and at home (from Nov and Dec). We all share a common bond and the same fears. Daniel's rejection has had an effect on several of us. Please keep all of these families and babes in your prayers.

Tuesday, February 17, 2009

Tuesday

Hello. I am just going to start by saying thank you to all of you who just recently posted comments. I got them (Mimi, Lois and Jamie) but I managed to reject them instead of accept them. UGH I am telling you....I am having one of those days.
Joshua! I seem to have not updated that he is OFF THE VENTILATOR! (I think it was Friday.) Dr Baden wanted to see what Joshua could do and let him just breathe on his own with oxygen. He made it one day. He was then placed on bi-pap. He has been doing really well from a respiratory stand point. He now has 3 - 3 hour breaks from the bi-pap and handles them perfectly well.
Sharon, from wound care, was just in and he is now sporting a 'Wound Vac' on his tummy. This should help heal the holes that developed in his abdomen from the tubes and infection.
He still has a large (very large) hematoma on his right side from the attempted chest tube. We are just watching that. I am sure that it is uncomfortable.
They are supposed to do an ECHO today to measure the clot in his left atrium. I will update on that when I hear something. We are just praying that it hangs on to the stitch and slowly disappears!
I have some pictures that I want to post and some other misc updates that I want to make sure that I have documented....mostly for me. I am sure that I won't get to it for a day or two.
I hope that you are all doing well. Thanks for checking in on us.
Leah