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.

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.

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 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 and 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!

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.

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!