Oh boy....er....oh boys!

It has been a real rough couple days. Sorry for the late updates.
First we will start with Mr. Joshua. He had a really good day on Friday. He was happy and played for a total of 3 hours in his high chair. Was loving his new Christmas toys, smiling and laughing. It was a good day.
Friday evening. I have a conversation with the transplant coordinator that really was a shock to me. He was relisted because he was off the list for a couple days and the realization that a heart could come at any minute and I would have to hand my baby off to another surgery was real tough to deal with. As it is a happy occasion it is EXTREMELY scary given all the circumstances.
Saturday morning. Joshua was obviously not himself. He didn't want to play, be held or messed with. He had also had a few really explosive diapers over the course of a couple days. (You know the ones where you have to shake your head and wonder how on earth the poo got in a whole 2 foot radius of the diaper when the baby is quietly sleeping!) Well as the day went on he became more irritable. I left for a while to be with the other kids and came back about 11 pm. He was trying so hard to go to sleep. He didn't sleep Friday night and napped very little through the day. Every time he would just get to sleep he would wake up screaming. Not the screaming because I am mad and want you but a real sad wimper like scream. He was surely in pain. After a while I noticed he was burning up. I took a rectal temp and it was 38.8 (101.8). Luckily my resident friend just happened to be covering Team 3 so I went out and talked to her and let her know that Joshua was really hot. (Joshua had a nurse who has maybe had him once several months ago. Not one that knows him well. She had a really busy night between Joshua and his partner who was causing major scares also!) The nurse came in and took an under arm temp (which is a waste with Joshua because he sleeps with his arms up in the air so he is always much cooler that way then the other.) It was only 37.0 so she told the Dr's everything was fine. About a 1/2 later she came in to check on him and did a rectal. She came up with 37.5 (99.5.....it needs to be 38.5 to be recognized as a fever and get Tylenol) They gave him some Benadryl to help him sleep. He was so miserable. After about 1/2 I was at wits end. I had them call the Dr again and she came in. She decided that he did look uncomfortable, so we should give him some extra Morphine for the pain since he couldn't have Tylenol because the nurse got a different temp than I did. At 2:00 am he was still screaming. He hadn't slept and his skin was HOT. I insisted that the nurse take his temp. She choose again, under the the arm. His under the arm temp....with it in the air was 40.8 (105.4!)! I would bet his rectal was a bit higher. So....at that point....he got some Tylenol. With that little concoction of meds he managed to sleep for an hour. The Rapid Response Team came in several times. His heart rate was 229, his temp was not going down and he was miserable. They ended up putting him on a cooling blanket and packing him with ICE while the Rapid Response Team evaluated him. Reed, a Fellow in the ICU, decided he needed to be admitted. And so at 7:20 am (and damn near frozen into shock) Joshua was admitted. He was listless pretty unresponsive. Come to find out looks like all the poop was getting counted as mixed diapers and he was actually not peeing. He had become pretty dehydrated and his sodium level was high 160's when the high acceptable level is 145. They started free water replacement so for every once of poop he got an ounce of water. His sodium did come down. They had to put him on Dopamine to increase his blood pressure so that he could get flow to his kidneys. Yesterday was a lot of fine tuning. Today he is off the Dopamine and peeing very well. He hasn't had any diarrhea but he still has a fever. His heart rate has come down. He was actually asleep last night in the 120's.....usually he is in the 140's. To top it all off...I am sure that he is breaking more teeth.
It is unclear at this point how long we will be in the ICU. It is nice to see all the familiar faces and be among friends again. I was hoping that it wouldn't happen until his new heart birthday.
And on the home front.....Mr Trevor. Before he came here had gone to the Dr and had a sinus infection. He did about 20 days of 2 different antibiotics and was better when he came here. He would have an occasional cough when we went out into the cold but nothing that I would consider serious. Saturday night he told me his ear hurt. I gave him some Tylenol and told him to let me know how it was the next morning. My dad said he complained a little but noting too much. Sunday evening about 5 Shyla called and said that Trevor had just had diarrhea and his ear hurt. They gave him some Tylenol and I went in search mode to see where I could take him to be seen besides the germy ER. I found out about the after hours clinic and had my dad bring Trevor down. We met with the Dr, she listened to him and asked if he had been coughing. A little...and I mean little. (Before when he was sick he coughed until he puked!) Well that surprised her since he has PNEUMONIA!! UGH. Then she proceeds to look in his ear and gasp. She said that must hurt so bad. Trevor says nope...the other one hurts. She looks in the other ear and makes another gasping sound. On a scale of 1-10 with 10 being the worst they could be.....he was a 9 in BOTH ears! She prescribed a special breathing treatment and a high dose antibiotic. One would think that the hospital pharmacy would carry what the hospital prescribes but that isn't so. We were the last appointment for that Dr and she left right away so I had to come pull favors in the ICU to get something different. By the time we got it all straightened out the pharmacy was closed. I brought in the new prescription today it was only going to take 2 hours to fill! UGH UGH UGH.
Please pray that both these boys get better soon.
Love and blessings,
Leah

Merry Christmas!!

I hope you all had a very wonderful Christmas. Ours was busy but wonderful.
The kids have been here for a week and I took vacation time from work so I haven't been on the computer much. Sorry for the lack of updates.
Joshua is doing pretty well. He was removed from the transplant list Wednesday and Thursday. He should be made active again today. He had IVIG on Tuesday and ran a really high fever of 103.5 for a couple days afterwards. They ran all tests on him again and he did not grow anything. His white blood cell count was never elevated so doubtful that it was an infection. (Which we are very thankful for.)
My parents and Matthew came here for Christmas. It was a very long drive for them because of the snow. They averaged about 35-40 miles an hour the whole drive. The kids were so great about waiting to open gifts until they got here. We had a wonderful dinner at the Ronald McDonald house on Christmas Eve. We were supposed to go an an Argossy Cruise but it was cancelled because the bus drivers refused to take us. WHAT A BUMMER!! We stayed at the house and it was great too. They decorated cookies and Santa came. He visited us downstairs while his helpers delivered gifts to our room. It was such a wonderful surprise. The kids LOVED it. We had a super brunch in the morning. It was at 8:30 am and I hardly call that brunch! An early morning person, I am not. We had a nice Christmas dinner at the house last night too.
I brought some gifts over to Joshua after we opened gifts and played at the house for a bit. He really enjoyed the wrapping paper. I will post some pictures of him later.
I hope that you all enjoyed the day with your friends and family celebrating the birth of our Father, Jesus Christ.
Blessings,
Leah and Family

Monday

Hello friends,

Just a quick update to let you know that Joshua continues to do well. I didn't come to the hospital this weekend because I woke up with a sore throat on Saturday. I didn't want to make hin sick if I was catching something. He was so happy and playful when I got here this morning. He was playing with a volunteer and was loving it. He was jabbering a lot today. Joshua and I had a fun time dancing and singing to a little Goofyfooted today. It was awesome!

A family that that left the hospital today gave him a HUGE dump truck balloon today when they left. He is really enjoying it. I am so glad to see him feeling better. :)

We got a special visit today from Dr Hardy and his daughter. It was so nice to see him. He is still surpised how well he looks! I can't wait until we are seeing him in his own office in MISSOULA!

Joshua should be made active on the list again in the next day or two.

Blessings,

Leah

And then there were 5!

WOW. Another little boy got a heart at 4 am this morning. That puts the count at 14 for this year. I heard they only did 4 heart transplants all of last year! I also read that a study was done and the survival rate of transplant patients is greatly increased in facilities that perform 14+ heart transplants per year!! I think that is a good sign. :)

Joshua is doing pretty well. They stopped the antibiotics and started him on Pedialyte. It is up to 15 cc's per hour. They will continue to increase the amount and start him on half strength Monogen tomorrow. There is still some banter on the rate and dosage of the formula. Maybe we will have a better idea tomorrow. He was pretty smiley today and we played for a while. Joshua talked to Trevor on the phone today too. Usually he smiles and stares at the phone but as soon as he heard Trevor's voice he was yabbering away. :) It was awesome. I love the bond that the two of these boys have. They don't get to spend much time together but Joshua knows that they are brothers and friends.

Today they switch residents (again) so now we will have to break in a new team again. This is a monthly task that I don't really enjoy.

I hope that you all are doing well. Blessings,
Leah

I can't believe how big he is getting. This is his "new" smile where he gets a big grin and shows his teeth.

And then there were 6.....

Little Miss Shayla is now PINK! And satting at a 100%. Something that us heart mommies generally expect NOT to see! :)
Her mom says she is doing great and looks really well. YEAH!!
There are now 6 little people still waiting to get hearts. Seattle Children's has performed 13 heart transplants this year, thanks to some very generous parents that chose to say YES and donate their child's organs. What a miraculous gift to be able to give a chance at life for another child when your own circumstances seem to be at their very worst. It is amazing to see God's work and timing first hand.
Blessings,
Leah

Shayla Wilson

UPDATE: Looks like Shayla won't be going into surgery until after midnight. It is scheduled to take approx 6 1/2 hours. I will update in the morning.

Goodmorning. I just received a call from Jamie, Shayla's mom. They just received a call for a donor angel heart for their daughter. They have been waiting since May. The surgery will be at 12:30 pst. Please pray for Shayla, her family and the Transplant team as this all unfolds. Also, with this awesome gift comes a sadness that I hope to never know. Please be in prayer for comfort and peace for the family that is grieving the loss of their child.I pray that they know the power of the gift they have given by saying yes. I will post an update as I know more.

Thurday Dec 4th

So, I wouldn't classify myself as an emotional eater. BUT~I have to say that I think they should only deliver transplant removals and suspensions with chocolate!!

Joshua is doing a little better today. He has been smiling when he wakes up. He is still sleeping a lot but he looks a little better today. The antibiotics and holding his feeds seem to have helped. They have decided against the CT Scan. The plan, as of this minute, is 7 days on antibiotics and no food. The x-ray this morning didn't show any air in the intestinal wall. It seems that we caught it really early. WHEW! There is still question on whether we hold the immune suppression this coming Monday or not. I will find out more about that later.
I also plan on taking some pictures and posting them. :) I dug my camera out of the truck.

My dad is on his way home. He left this morning. Please pray for safe travel for him as he ventures home.

Still day 187

Ok. So now I have information.
They are pretty concerned about his gut. They will stop feeding him and start him on TPN. They have started him on Vancomycin and Zosyn (antibiotics) as well as Flagyl (anti-fungal) and will watch him very closely. The doctors feel that this was caught early enough that the risk of perforation is low. They are also going to place a NG tube into his stomach and set it to suction. He will have another abdominal x-ray tomorrow. It sounds like this is going to be a 10-14 day course. He could have a harder time fighting this due to the IVIG and Rituximab but they don't feel that it will be a huge deal. They are not sure if he will resume treatment next week or not. This was his hold week.
Until this is cleared up, he will be temporarily removed from the transplant list.

Day 187

Wow. It is hard to believe.....We have now been here more than 6 months.

Joshua has had a rough couple days. He is so cranky and uncomfortable. They did another abdominal x-ray today and think that he may have some kind of bowel infection. I am waiting to hear what the official word is. I will update as I know. Please pray that this is nothing. Having an infection will temporarily remove him from the transplant list.

December 1st

WOW! I can't believe that we are into December already!! That is just nuts.
I wanted to let you all know that I am back in Seattle as of this morning.... is you call 2 am morning. :)
Joshua welcomed me last night by peeing all over my leg when I changed him. BOYS. He has had a great morning and has been so full of smiles. When I held him this morning he just pushed himself into my me as hard as he could. We cuddled!! He is napping now.
I will get some updated pics up tonight.
Please keep the Wilson family in your prayers. They are having a care conference regarding Shayla today....right now, actually. I have not had a chance to see Mike or Jamie since I have been back. It seems that she had a real rough week. Please pray for the family and wisdom of the drs and staff who are making decisions about her future.
Blessings,
Leah

Wednesday 11-26

Just wanted to send a quick note to let you all know that I hear Joshua is doing well. They are still working on wiening him and he has been a little fussier than usual. They did only go 5% on both but I wouldn't allow that to happen if I was there. I would have made them pick one or the other. It can be a little frustrating . They are also starting Lansoprosol AGAIN! I have hit the point.....I am going to let them and then when he pukes no stop for the next 24 hours maybe they will listen to me and know that I do know what I am talking about. I am so tired of the battle. I am sorry that Joshua will have to be uncomfortable but not sure what else to do at this point. There is a slight chance that it could work now because of the G-J Tube. Since that has changed I will let them give it a whirl. Please pray that Joshua can tolerate it and stays semi-comfortable. He hasn't been puking so it will be easy to know what the culprit is if he starts. *SIGH*
Other than that. He has been tasting food, I wish I could be there for that. I asked the nurse to hunt down a camera so that I could see his faces. That is a fun mommy thing that I am missing with him. They only seem to feed him when I am gone. :(
I could hear him babbling and playing with his flower toy. He sounded good. I can't wait to get there and snuggle him.
Betty is back in the ICU. They are concerned about her having a stroke. Please continue to pray for her health and for strength for her loved ones. She had a scan yesterday and went for another one this morning. I haven't talked to the Dr's or Ray to know what is going on yet today.
I hope that you all are well and I hope that you all have a very HAPPY THANKSGIVING with your families.
Blessings,
The Garrison Family

Garrison Family Update

Oh where to start.....
Joshua is doing ok. He starts the Rituximab today. This is the second of 4 steps to bring his immunity levels down. They did a 20% Morphine wien yesterday so he is having some withdrawls today. The nurse, Joy, is on it and hopefully they wont be so aggressive next time! Other than that all seems well. Since I came to Missoula he has had a tub bath and been doing some physical therapy. He has been spending time with Grandpa and when Grandpa needs a break he goes out and flirts with the nurses at the nurses station! What a kid. :)
Betty is stable. It sounds like she had a busy Monday...which is the norm for hospitals. I have been sick the last couple days so I will not be going up to see her for a day or two.
We will be staying in Missoula until next weekend at least. We want to make sure that Betty is ok before we go. That means we will be here for Thanksgiving. I am happy to be able to spend the holiday with my kids. I am sad that Joshua can't be with us but I am really looking forward to next year when we can ALL be home together.
Trevor has been having some issues lately. Please keep him in your prayers. He can't understand why he can't be with at least one of his parents. He has been pretty weepy. In the the middle of one of these weep sessions he said "it is all God's fault for giving Joshua only 1/2 a heart!" GASP!!! That is a really tough one to explain .....so if anyone has any suggestions I would be MORE than happy to hear them. Maybe someone knows of a good christian book that might help!
The girls are good. Shyla is looking for work. She has been in a pretty good mood lately. That is nice. She is a little sore after taking a serious digger in the kitchen the other night. But....as James said....what were you doing standing on the furniture anyways?? Let alone a 2 legged chair! :)
I hope that you all are doing well.
Blessings,
Leah

Missoula

I will be going to Missoula in the next hour or so. I really feel that my other kiddo's need mommy right now. My two sisters, thanks to marriage, will also be going to Missoula. We are all meeting here at the hospital and will caravan home together. I am not sure at this point how long I will be in Missoula. My dad is going to come out to Seattle tomorrow to be with Joshua in my place. I find peace knowing that someone will be with him.
Betty is out of surgery. The surgeon said he felt it went well. They are concerned and are now dealing with hemorrhaging. She will be in the hospital for a while to monitor to her and make sure that her brain recovers. I don't know a lot of the details right now. Please keep my father in law Ray in your prayers. I am sure that he is scared and hurting.
Joshua is still continuing to run fevers. We are now out of isolation as the cultures were negative. He is just feeling a little crummy. Please pray that he gets healthy and strong as each day passes. Oh, we are also having a GI consult done to see if there is a reason for the vomiting....that seems to never stop! Hopefully we will learn something. I think it is common for kids in heart failure to have a lot of vomiting. They are adjusting his milrinone by weight. The dosing rate he is on now is 8.7 kilos and he is 9.4 now. If they feel the need to increase it anymore than just for weight then he will make a trip to the the NICU. We shall see what they choose.
Leah

PRAYER REQUEST

PLEASE PLEASE PLEASE stop and pray for our family.
I just got a call from my father in law. My mother in law, Betty, was just rushed into emergency brain surgery. She had a brain aneurysm. Please pray that she comes through this and pray for all the members of our family who are hurting and traveling now.

Tuesday

Hello friends,
Just a quick update today to let you know that Joshua is doing well. He has hit the 20 pound mark! He started his IVIG yesterday. That is the first process of the 4 week long immune suppression regimen. They are basing it off of data from older kidney patients. There is no real data for doing this in young heart children. The hope is that this will help him better accept his new "angel heart".
He is supposed to work with OT/PT today and try some oral feeding. He is very cranky, so I am not sure that it will happen. The IVIG is a lot of extra fluid so he is working harder to breathe. He will get an extra dose of IV lasix soon and hopefully that will help him pee of some unneeded fluid.
I will update again soon. He is screaming and I need to go tend to him.
Leah

He is out of surgery

He is sleeping peacefully. He came back out with 2 new friends and a new accessory.
He must have really been a charmer in the OR. He has a big brown bear with a mask on and a squirrel keeping him company. I will post pictures when I have a camera.

Thursday

Oh....where do the days go!! I can't believe that my time with Chubs in Seattle is almost over. :-(
Joshua is in surgery, finally. I will update when he gets out. He is getting a G-J tube placed.
He will get to have the NG tube taken out of his nose and will have one that goes right into his tummy. (Here is a website to another children's hospital that has some info if you are wondering. http://www.cincinnatichildrens.org/health/info/abdomen/home/) I will put a pic of his new accessory when he gets back.
He has been doing really well. He weaned himself off of his O2 today. He decided he didn't want it on his face and took it off. He did really well. He satted in the 80's all morning on room air.
Yesterday, OT/PT came by and fed him bananas! I was pretty bummed that I wasn't here and have no pics of his first "real" food. But we are going to try squash on Monday. I won't be missing that one! Here is a little video that we took the other night. He like to "find" your forehead! :)
Ah...the brotherly love. :)
(I wish it was more clear. I took it with my Blackberry so it is pretty rough looking....but you will get the idea!)

Monday

Joshua is doing good today. He has been pretty sleepy but for the most part in a real good mood.

I wanted to put out a prayer request for baby Mia. She is up in the ICU. We were right next door to her when we just recently went to visit the ICU. She is a little 4 month old baby that really needed a heart. Today, her miracle gift was received!! Please pray that her recovery goes smoothly and without incident. Please, also include the donor family in your prayers. As one family is celebrating, another is grieving. Both of the families need to be lifted up.

Blessings,
Leah

Little Pearly White

Joshua has a tooth!! His bottom right tooth has broken the skin. He has been so cranky all week. I am sure that this explains much of this. He has a red chaffing chin and cheeks, low grade temp and a bad temper. The bottom left one is right at the edge of coming through. It is so hard to believe that he is getting teeth. He has never tasted anything other than formula just a couple times and medicines. I can't wait until he can start to experiment with some other flavors and textures. His heart rate is back down to the 130's when he is sleeping. He hasn't needed as much O2 the last day or so either. He is satting in the 70's on 2/3 of a liter. Much better then the 2 liters and blow-by that he required early this week just to stay in the low 70's.
We are back on the floor now too. Room 4004. I miss the other cluster but it is nice to be out of the ICU. I enjoyed getting to see everyone up there again but I can "hide" more on the floor. When you are in the ICU you are more in tuned to what is happening around you. You can hear and identify different tones from other rooms. On the floor you can shut the door and you only have the sounds of your room.
My mom, James' mom and the girls went back to Montana today. They just called to tell me that they made it. I am SO thankful for the time that they have spent here.
Grandpa Ray~ thank you for letting mom come up here. I know that it was a sacrifice and I know that you really missed her. You have NO idea how much I appreciate it!
Grandma Betty~Thank you for coming and allowing the girls to be here as long as they were. Having at least part of the family here made it so much better!
Mom~Thanks for coming up here for the week. It went too fast. I miss you like crazy. Thanks for helping transport the kids.
Shyla May~ I miss you already. You are a daughter to be proud of. I love you. You better call me everyday.
TD~ I love you and high five for listening to your mommy. :)
Theresa~ Thanks for spending your vacation here so that Trevor could come up and see me for a while.
Trevor is still here with me this week. :)
I hope that you all have a nice week.
Blessings,
Leah and Joshua

Out of Surgery

Joshua is out of surgery. He is acting like a drunken sailor, but he did well. Or rather the Dr's all did well. :) He has a new line now. I would also like to report that his heart rate when he was playing this morning in his exer-saucer was 136-138. He was in the 120's when he was asleep! YEAH. I will more later...just wanted to let you know that he was ok.
Leah

Surgery

Just so you know....Joshua is in surgery again right now. Trying to get a PICC line that works, or some kind of line. There seems to be some confusion. Please pray that he doesn't loose much blood. He lost a fair amount the other day and there is no blood in house for him. :-(
I will update when he is out.
Love,
Leah

Ugh...it has been one of those days.

So....here we are. Still in the CICU. We no longer have a room on the floor. Evidently we were moved out. I would have LOVED for someone to call me so that I could have gotten all my things out. But they didn't. Now, I am chasing people down to make sure that I have all my stuff. UGH.
Joshua hasn't had a very good day. His heart rate has been pretty high all day. Mostly in the 180's. He is pretty dehydrated and is waiting for a blood transfusion. He lost a lot of blood in surgery today so that made the need that much greater. They had weaned him from the Propanalol (which was started to reduce his heart rate). I guess he really liked it. Now they have started him on Esmolol. It pretty much does the same thing but it is an IV med. So....here are we are. Residents again of the CICU. He can not go to the floor while he is on Esmolol.
It has been very busy here today. While Joshua was not critical there has been a lot of traffic in and out trying to trouble shoot and come up with the best plan.
So a recap. He had a fever this morning. I think he is feeling yucky...I don't really think he has an infection. He got a new PICC line this morning. Neither lumen draws and it was not sutured to his skin. :-( His PIV that he was supposed to be getting his Milrinone through blew out. His heart rate was way too high, blood pressure was too low, iron and potassium need some tweaking, still waiting on the blood transfusion....I think that about sums it up. *sigh*
So, the upside Les was his nurse today and Nicole was in here helping out most of the day. :)
I am EXHAUSTED and NEED to get some work done.
Leah

Out of Surgery

Just wanted to let you know that Joshua is out of surgery. He is back up in the CICU but is expected to go back to the floor later tonight. He spiked a fever this morning and there is a fear that he possibly has an infection in his blood. Please pray that he does not. We do not need a set back right now.
He has a new line and it all seemed to go really easy.
Thanks for checking in on him!
Leah

PICC line PROBLEM-O

So~our favorite little dude is spending the night in the CICU tonight. The IV team came in to change the dressing on his PICC line and it broke! It bled and was a mess. They put in a PIV so that he could continue to get his Milrinone. Policy states that you can only get Milrinone through a PIV if you are in the unit. They tried to rush him into the IR for immediate care but they had another little kiddo in there and they weren't going to be able to get him in until 2 am. Needless to say they decided that it could probably wait until the morning.
We just had a bunch of back and forth regarding this line earlier today. Change it...don't change it...make it bigger....can't make it bigger....need new line....too risky to put in new line....You get the idea.
So.....it was determined that this PICC line would stay in until he has the transplant and then a line would be put in through a vein in his upper body.
Of course....Joshua complicated things....I SWEAR it is the Garrison in him. :-) LOL
I don't know what they are going to do with the line now. Fix it or replace it. Guess we will find out tomorrow.
I am VERY glad that Betsy is on tonight. She is taking care of the kiddo right next door to Joshua. I know that she will keep him company tonight. :) We lucked out and ended up in the unit and not the Bridge. (I love having friends!) In fact he is in Room #70. That was the room we spent most of our time in this summer. I am at the house with Chubbs tonight. I will have to get up super early and head over to the hospital so that I can be there when they take him back to IR. Oh~ I am also happy to have friends out on the floor! :) They are holding our room for us so we didn't have to move out while he made a visit back to the unit. YIPPEE.
Hope you all are sleeping! :) More tomorrow.
Leah

October 9th

This was one of Joshua's first rounds in the Bumbo chair.
http://www.youtube.com/watch?v=_5G7ghg0fmI

When the page loads right under the picture make sure that you click to watch it in high quality.

Happy Halloween!! X2

A little coaching can go a long ways...... Sorry you have to watch it sideways.

Happy Halloween!!

Not too much to report on today. I just wanted to share Joshua with you all.

He did get his HIB vaccination tonight. He took it like a champ. We had a Heparin issue today but the important thing is that Joshua is ok. It was a grim reminder that no matter how careful, mistakes happen. For the most part he was very happy and flirty. Tonight I was playing with him and blew a raspberry under his arm. He did start to giggle. Still a little reserved but I think I found his ticklish spot. If you touch his ribs or his feet he gets pretty agitated. He does not find it at all entertaining.

Shyla and I took Trinity (aka Little Bo Beep...or if you ask her, Peep) trick or treating around the house. We had a lot of fun and she really...REALLY scored a lot of sugar. Way more than we need! I was proud that I maintained COMPLETE control and had one Junior mint and one Almond Joy. :)

My BIG boy Trevor (who was a ninja) had an enjoyable time with Grandma tonight. I am sure that it is one that will stay with him for a long time. It will be known as "That time Grandma took me and we got lost and then she tripped and took a digger over the weed." :) Ah....the memories.

Here are some pictures for you to enjoy.

I hope you all had a nice time today. .

Blessings,

Leah

It is official!!

I have in my hot little hand the OFFICIAL TRANSPLANT LISTING paper!! We are now officially "waiting". They will be getting me a pager so when the best possible heart match for him comes available they can reach me. Most likely I will be right around the hospital but this does offer me up some freedom.
I have had people ask where on the list he is. Let me start by saying there are other babies waiting that are in much worse shape and critical need than Joshua. However many factors come into play when they get listed. Joshua is currently the only blood type "O" waiting for a heart in his weight range. Consequently he is #1 on the transplant list based on the sorting factors. There are other babies here that are also listed as #1 but they have different blood types and weights than Joshua. Joshua is basically just listed as #1 in his category. Please do not think that he is #1 because he is in a critical state! Yes, he needs new heart, but he is stable and doing well. PRAISE THE LORD!!
I want to thank Jen, Paul and Gracie for the BEAUTIFUL flowers!! The vase is a pumpkin. :) It is so festive and beautiful. I have been here for several months and have managed to maintain complete composure.....with the exception of the last few days. So Jen and Paul~ your timing could not have been better. You have no idea how much this lifted my spirits! Thank you! :)
I am also excited to tell you all that Chubbs will be coming to stay with me for 2 WHOLE WEEKS! I am SO SO SO excited. We will conclude his stay with his 7th Birthday celebration. I cannot believe that he is 7 already. He is such a little man. I am so blessed to have him in my life. He is so wonderful I can hardly believe it. :)

HIB Update

The last piece to our immunization dilemma has been taken care of!! Part of getting Joshua ready for transplant was to make sure that he was up to date on all his immunizations. We were able to give him all but the HIB shot. Seemed there is a little shortage of this vaccination. I had even resorted to calling Missoula to see if we could get a dose from his pediatrician, who unfortunately was out of the office for the week. The nurse was concerned about the refrigeration required.

BUT....the pharmacist, I believe, was able to plead his case to the manufacturer and actually get them to agree to get us a dose by FRIDAY!! The regular shipment is 1-2 months out. This is a spectacular miracle!!

***Go down below the post from yesterday. The video actually worked!! :)

John Hancock

So~I have signed Joshua's consent for transplant. :-) I am overwhelmed, excited and nervous.
I will update again when he is actually listed....TODAY!

Prayer request~Please add the Lynn Montgomery family to your prayers. Dr. Montgomery was my OBGYN with Joshua and also monitored me when I was pregnant with Trevor. He died suddenly of a heart attack while playing hockey last night. He leaves behind a wife, two young sons and a grieving community. He was an AWESOME doctor that touched many lives!

I know....I know.....

I did it again....waited a week to post.

So. Where to start. Joshua was moved back to the floor last Wednesday. :) We are in Room 4025 now. One door down from the other space. This room is ok. It is a smaller but it does the trick. I don't think I would complain much if the shower was bigger!!

It has been a pretty quiet week. Joshua was in a little funk for a few days. But was much better come Saturday.

I talked to Dr Law today and was told that the transplant is a go and we can get him listed. I wish that it didn't have to be such a complicated case. He has some good things going for him. He is healthy and big. Being bigger really has an advantage as far as getting hearts goes. He is also post Glen which is good and most certainly in his favor. He has some issues that are certainly not going to work in his favor. Pretty scary scenarios but the fact is he is not going to live without it. He may or may not live with it but at least there are odds. This is most certainly a time for prayers!! He is sensitized. His percentage is over 90%. That means that his body is going to aggressively attack a heart from over 90% of the population. They are going to be talking to experts to see what can be done to help with decreasing the chance of rejection. We would LOVE to see him have the opportunity to have a "negative" heart. The chances are super slim so we will probably accept a "positive" heart and do what we can to get Joshua's body to not attack. They have done this with success but there is no real data one way or the other. He is also at a higher risk for rejection later on because of these antibodies. He is also going to be higher risk because of his double Glens. It will make for a very tricky and complicated surgery. One of the fears is that he will have limited blood flow and would have to have stints placed. There is again high risk because they will be located at suture sites. The risk is that while ballooning to create better blood flow and reduce pressures, he could bleed out. We would certainly hope that none of things are issues but we all need to remember that this transplant is in no way a fix all and comes with high stakes.

Dr Law also talked about replacing his PICC line with a Broviac Line. This is a more permanent line. There is data to support that this type of line carries less risk of infection.

So....what does all this mean? Soon, we will probably see him go to IR for the new line placement in the near future. He will finish up the catch up immunizations and the Doctors will talk to the experts to see what the plan is for the immuno-suppression. The Transplant Coordinator will be in to talk to me and get my consent for the transplant.

The most shocking news to me today was the fact that Dr Law didn't feel that we would have him listed for as long as I had decided he would be. :) (Not that we have any pull in this department.) He just said to get ready and get mentally prepared....this could all happen very quickly. Going home in the next few months may be a reality.

I told him I will be patient and I will be here as long as Joshua needs to be. I don't care when I get home as long as Joshua is with me.

Blessings,

Leah

*** so after such a "heavy" post thought you should have some happy thoughts to take away. These were taken this afternoon. He is getting SO strong.

Being a ham

Update

Well Joshua is still in the ICU. I assume that he will be moved tomorrow. Seems there were no beds on the floor. Gives me one more day to recoup! :)

I met with Dr Law. It seems that Joshua's antibody study is done and he is what they refer to as "sensitized". Evidentally he has a really high level of antibodies built up from the cavadar tissue that they used to build up his aortic arch. This really complicates things but I wish I could explain it to you. I will be reading up and gaining knowledge and then I will let you know more. There are plans in place if he is accepted to go forward with the transplant. I will fill you in on the details as I better understand them.
For now please just pray that he remains healthy and strong and that the Dr's are making the best decisions possible for him.
I also am reaching out to you to please pray for us as a family. We need to make some pretty big decisions about where the children will be located while James is in treatment and we are waiting for Joshua's heart. Right now Trevor is living with Grandpa and Grandma but he is really missing me.....probably not NEAR as much as I am missing him. I have thought about moving him here with me and home schooling him but that opens up many other issues too. I hate not having all my children with me together. As a mom you never plan on having your heart in so many places. Each one of them holds a section and I just don't feel complete without all of them by my side. I know that it will happen as it is supposed to but right now I am just having a very hard time.
Please love on your little ones a little extra today. :)
Blessings,
Leah

The order is in....

We are going back to the floor. Joshua has been doing really well so they feel that he can go back to the floor. He is still on the Milrinone but I guess if you are waiting for transplant then you can have that and still go to the floor. He has been doing really well. Last night when he was sleeping his heart rate was......<<<<>>>> 128!! WOW
He only stayed there for about 15 minutes but hey...128! Yesterday he was pretty much in the 140's awake and 130's asleep. Today he has been in the 157-163 range. His O2 has been in the high 70's to low 80's. He has been full of smiles.
Oh, and I must also mention his new talent. He is the KING of blowing raspberries!! Pretty fun.
Dr Law is supposed to come and talk to me today. I am so glad that they will be following him on the floor.
Love,
Leah and Joshua

FINALLY!

I am finally feeling better and was able to go to see Joshua. His nurse said she thought it would be a good idea for me to come up because he was in a funk. I put on a mask and away I went. :) He was very happy to see me and perked up. We played for a while and then he decided it was nap time. It took him a while to settle because he kept making sure I was still there. I did sneak out when the nurse came back from lunch. It is VERY hard to sit there wearing the masks for too long. :-(
He seemed to be doing pretty well although he is a little puffy. Dr Jeffries is on this week and has already started making changes to get some fluid off. I also got to chat with Dr Law. We are going to be meeting tomorrow to "talk transplant". They were waiting for a sonogram of his abdomen to see if he has another effusion. Looks like he has something going on but probably not enough that itneeds to be tapped. HOPEFULLY.
I will be going back up after supper to hang out with him again for a couple hours.
Love,
Leah

Sunday Night

Well~I still can't go to the hospital. I am starting to feel better today but the nurse asked that I not come in. :-( I asked the nurse tonight to call the charge and see why I can't come in with a mask for just a little bit so that I can see my baby. It is killing me not being able to see him. It has almost been a week. It was one thing to miss him and know that I was 2 states away....it is another to be a block away.
I hear that he is doing ok. Still on oxygen. They slowed down his oral feeds and started him back on TPN today. His xray this morning showed that he has extra fluid in his lungs.....sounds like the effusion is sneaking back. I guess the plan is to slow down the food and hopefully his body will absorb the extra fluid. (I think...I have not been involved in rounds so I can't say for sure.)
I am very thankful that Meredith is with him tonight. FINALLY a nurse that I know!!! This whole week that I have been out I have spoken to people that I don't know. I don't like the feeling of not knowing who is with my baby. *sigh*
Conference tomorrow....not sure if Joshua is up for discussion or not. Dr B asked to reschedule out transplant meeting until I am better. I will update when I know something. Please pray that I will be able to kick this cold soon and be able to be there with my baby!!
Take care,
Leah

Friday

Hello friends,
I don't have a lot to tell you because I am still not going to the hospital to see my little Joshua. It is killing me, but I know that a cold right now could really set him back. It is better safe at this point.
So, I am a little saddened that I was not there today when they TOOK HIS CHEST TUBE OUT! HOOORAY!! :) I have called several times and they always say that he is doing good. He spent some time in the exer-saucer playing and enjoyed that. I miss him so much!
He did spike a temp today so they are running all the cultures on him.
I met with the social worker today. That went pretty well. I really like her so that helps ease the old nerves. They ask a lot of questions but nothing I can't handle. Now.....she did say that I was one of the most sane people that she had ever met.....HHHMMMM???? :)
Also, please be sure to add Trevor to your prayer list. He is sick right now. He was crying and asking me when I was coming home so I know he is not feeling well. It absolutely breaks my heart that I can't be there to cuddle with him when he is sick. :-(
Love to you all.
Leah

Thursday

So just a quick little update for you. Joshua has been doing very good. He is such an awesome baby and I am such a lucky mommy!!

We are well into the evaluation process for the transplant. I can't believe how quick things roll. I was supposed to meet with Tricia the Social Worker but I had to cancel. I am really sick today and will not be going to the hospital. Because we have to meet before Monday, we scheduled something for tomorrow and I will just go sporting a mask. I don't think that I will be able to go see Joshua for a few days. The last thing that I need is him getting sick at this point in time. *sigh*

Here a couple pics from the last couple days. His heart rate has been lower. I have seen 138 and 139 a couple times when he was sleeping. He has mostly been hanging out in the 140's to 160's. He has been on and off oxygen a couple times. He started Lovanox injections for the blood clot in his leg. Other than that all is about the same.

Take care,

Leah

And if I didn't like him so much.....

I probably would have thrown something at him. At who.....DR BADEN. He came in, smiled and just said "hmmm....look....137 days."
AAAHHHHHH are you serious!! I can't believe that it has been that long since James and I drove our little Joshua over here expecting no more than a 30 day stay. *sigh*
So. Joshua is having a really good day. I dressed him in a new outfit that James and I bought him when I went back to Missoula. It was fun to see him dressed again. Of course....he has been puking since I dressed him. So far we have been spared having to change him. We placed the NG tube back in just a minute ago. Sad to see him have to have it again but happy to know that he will FINALLY be able to get something to eat. I can't imagine no food for 5 weeks. We tried oral feeds yesterday. He loved getting something to eat in his mouth but is not yet proficient enough to get a decent amount. He will start Monogen today and hopefully be up to full feeds sometime tomorrow. We also started him on Milrinone yesterday. I can't see much a difference and we weren't sure that we would see any changes but Dr Boucek thought it was worth a try. He has been fever free for the last couple days and we are also going to talk to ID about stopping the antibiotics for now. Dr Baden (who redeemed himself with this next statement) said that we will get an x-ray in the morning and if his lungs look the same we will probably pull the chest tube out!! :) I still may request one or two more days just to make sure that we don't have issues when we start feeds. We will see what he thinks. Most of me wants to totally agree with him and take the darn thing out but I also feel the need to error on the side of caution. I would hate to see him have to go through another placement of one. We will see what tomorrow brings. It only put out 6 yesterday. Weird. Seems we get moved into the ICU and he just starts making changes for the better. I think, personally, it is because he gets to see all his girlfriends now. :)
I am feeling a little more at ease today with the thought of transplant. I am sure that I be wavering back and forth for a bit between ease and anxiousness. All of the components of this make me feel a little uneasy. I have to go through an evaluation to make sure that I am a "fit parent" or something to that nature. They want to make sure that I am responsible enough to follow through with all his needs before he can be listed. I am confident that they will find me totally able! :) Then I will have to meet with the financial counselor. I am pretty nervous about this part. I don't yet know what insurance will cover and what they won't. I am not sure that financial aid will help with the cost of the transplant or not. I am confident in knowing that if it is God's will for him to get a new heart, then He will also provide the financial means to do so. But somewhere inside me....I still feel a little nervous. They will also do dental screening, blood tests, tissue test, and antibody studies on him. That is just the little that I actually know. :( I thought about reading up internet but decided against it. I don't need any additional stress at this point. I will take it day by day and just deal with the pieces that are brought in front of me.
I have some prayer requests today, in addition to Joshua of course. :) We have some little friends that just need to be lifted up. Joshua has a little NICU roommate named Lucas. I don't know what ails him but I know he has had a real rough night. He is 2 weeks old and about as cute as they come. His family had not been here since the afternoon that we moved. I don't know why but please pray for all of them. I also ran into Jen, Gracie's mom, and she is back in the ICU because of Serratia in her chest incision. Please pray for Gracie that she be healed quickly and completely so they may go back home. They are a wonderful family and I would love for them to be able to take her home and just love on her there. Also, Tyler and his family are really having a difficult time right now. He has been having fevers again. He was supposed to have an MRI this morning but I haven't heard that results yet. His mom, Bambi, is really feeling the stresses of being here in the hospital.
Also, my dad is traveling back to Missoula right now. Please pray for safe travels for him as he goes home. It was a very hard parting today. He will surely miss seeing Joshua daily. It was a real blessing having him here with us this last couple months.
Thanks for checking in on us and listening to me "babble". :)
Blessings,
Leah

And the verdict is in......

The doctor's rounded today. They talked about him in conference. I am happy to be in the ICU and to hear the news from Dr Baden. They are going to start screening Joshua for transplant. They determined that he is not getting any better and they don't feel that there is anything that is going to happen to make his heart better. The regurge has now been classified as severe. Dr Boucek is supposed to come and talk to me today. I don't really know what to expect at this time. I know that this is a lengthy process. I am attaching a link from the Seattle Children's website. (They do say that they do 2-5 transplants a year. I think that this really needs to updated. They perform more than that. I personally know 3 families that have been blessed with transplants this year and I have heard of others. I will ask about the # and let you all know. ) If you have any questions please let me know and if I can't answer I will ask. Please pray that the screening goes smoothly and that we can get him listed.
Blessings,
Leah
http://heart.seattlechildrens.org/our_services/transplant.asp

Sunday

Hello Friends,
I just wanted to let you know that Joshua has been moved back to the ICU. I don't know for how long. They will discuss him at conference tomorrow and then I will hopefully have something insightful to tell you all. He has been having fevers again and the Dr's on the floor were worried that if something more happened to him, he would not be able to overcome it with his fragile state. (He has also been having increased heart rate and is on a new med to help that out. We have also added Heprin because of a possible clot in his leg.) I feel more like he is in between care. Not good enough to be out on the floor and not sick enough to be in the ICU. He has had a real good day overall and I am not too worried about the move. It is more like going back to be with good friends! :) You will need to call a new # to reach me 206-987-2040. Please pray for the wisdom of the Dr's tomorrow as they discuss the future plans of our little Joshua.
Love and blessings,
Leah

After the Cath....

Dr Johnston came in and said that Joshua tolerated everything very well. There didn't appear to be any more fluid in his chest cavity so they didn't do anything with his drain. (It got pulled just about out the other morning. :( Bad, bad, bad.) He ballooned his left SVC where it was sewn in and expanded one of his aortic stints while he was in there. The bad news is his tricuspid valve. The pressure in his heart and SVC's is very high. Dr Johnston said more blood is flowing backwards than forwards. They will have to talk about him in conference possibly tomorrow but probably Monday to see what they think they can do. *sigh* I don't know for sure but my guess is that they will get him listed for transplant sooner rather than later. Please continue to pray Joshua and his healing.
Blessings,
Leah

Thursday October 9th

Joshua is now in the cath lab. Please pray that all goes smoothly and that we can find and fix the problematic area so this effusion will GO AWAY!
He had one of his best days yesterday. We took out his NG tube to see if that would help with the gagginess. It WORKED! He is now taking all meds by mouth. He really seems to like them. He did get gaggy again this morning right before his Ativan. I am thinking he is maybe having nausea due to withdrawal. He has not had a fever in few days. His chest tube only put out 60 yesterday. They flushed it this morning and now more seems to be draining but from the looks of the x-ray it is not still accumulating. All good news! I will update you all when he comes back out of the lab. Maybe we will know SOMETHING today. :)

Monday October 6th

Well I just wanted to let you all know that I am back in Seattle. I had a wonderful time at home with James and Trevor, it was very hard to leave!
Joshua looks great. He is retaining some fluid....that is the 1st thing that I noticed. I don't know if he just gained weight while I was gone or if he is holding onto more fluid.
His cath is supposed to happen sometime this week. He has been having fevers still, so I don't know what the plan is exactly. I had a WONDERFUL surprise when this morning Dr Hardy stopped by. Today was his day to be in Seattle. He is going to help get a more consistent level of care so that I don't feel like we are starting over each week. The Dr that followed us here the first time we were here is back from maternity leave and I am really hoping that she will be able to follow Joshua. I really liked her and I appreciated her frank, educational style. Still waiting to hear whether or not she can follow us but I hope that I hear soon. Another thing that we discussed was how important it was to have a plan. His heart function is still pretty poor and his regurge is still moderate. If we need to move forward with a transplant that we should start to get that plan in place.
I also had a visit from the endocrinologist today. They started Joshua on some thyroid medication that he will be on until he stops growing. (With boys does that really happen? :) ) I am glad that I talked to Dr Salerno about that when I did. He is on a small dose to start. They will run another sample in 3 weeks and then we will have to follow up with Dr Randall if we are not here to go to clinic. Wouldn't it be nice if maybe this solved something! :)
Well my friends, it has been a really long day. I will update some more tomorrow.
Leah

Monday

Just a quicky today....Joshua is going to IR to have a new chest tube placed. The other one is not working. Please pray that he comes off the vent easily and doesn't end up back in the ICU. Grandma Betty reports that Joshua is VERY happy and is loving playing with her. VERY GOOD NEWS. 3 days before I left I couldn't even get him to break a smile.
I will update more when I know more.
Leah

Bad Leah

I don't think that I posted to tell you that the cath was cancelled. They didn't feel that it was worth the risk because the fluid seemed to be stopping on its own. It is still coming out very slowly....maybe 30 - 45 cc's all day. That is down from 200! The plan is that he will start feeds Monday (pedialite) and then go to formula. I am just SO glad that there is a plan. I really like Dr Salerno and asked him to PLEASE come and check on him while I am away. He promised that he would. He has been feeling really crummy all day. Please pray that he starts to feel better. He has had a high fever (102) most of the day with heart rates in the 170's - 180's even when he is asleep. The thought (right now) is that he is just to dry. I think this same thing happened in the ICU. He is now in the 150's....BETTER.
I had some unexpected visitor's today. Paul and Jen (Gracie'sparents) came to say hi. They shared a room for a wee bit when we were in the ICU. Gracie had to come in for another procedure which seemed to have gone really well. It was an open heart surgery yesterday...on the floor today. Please pray for little Gracie that the Lord continue to heal her and bless her family. They are doing a SUPER job. Having a "heart" baby is a lot of work but I can tell they are doing a great job as parents. I may also add this is their first baby, so it is all a learning process. They live in Gig Harbor and I have always enjoyed them and their family.
Mom (James' mom) made it in tonight on the plane. No signs around her neck or nothing....we found her right away! :-) James said we should tell the airlines that she was senile so they would escort her, but she did great! It has been 35 years I think since the last time that she flew. Sounds like my sister in law Debbie will be coming for a visit tomorrow. If all goes as planned we will head to Missoula on Saturday night so I can be home to catch Trevor's first fall soccer game. COOL!! :) I have lined out nurses for all but one shift while I am gone. They treat us so well here. It will be nice to not have to worry about someone who doesn't know Joshua taking care of him while I am gone. I want to make sure it is as easy for everyone as possible.
Brooke came by for a visit too today. It was so nice to see her. I am really going to miss her and the other couple nurse friends that I have made since I have been here. I really hope that I can add them to my "long distance friend list" you all know who you are.....you know the ones that MOVED from Missoula and now we have to talk via email! :)
Love to ALL of you.
Leah and Joshua

Prayers for the Lara Family

I had asked yesterday to please pray for this family. I have just found out that they did loose their son yesterday. He was playing lego's with his daddy when he went into cardiac arrest. Please keep this family in your prayers as they process through the loss of their son and brother.

Can it REALLY be?? Probably Murphy's Law....

I just thought to ask about his xray this afternoon. I am almost tearful....no actually I am. There is VERY LIMITED amount of plural effusions in his lungs! His chest tube has only put out 10 cc's in the last 6 hours. PRAISE THE LORD!!!
I assume that he will still go in for the cath just to make sure. We don't want anything creeping back on us. Plus it would be nice to have a measurement of the regurge in his tricuspid valve.
The Lord, who knows me more than I know myself, must know that I am growing weak here. I have never been so homesick in my whole life. I try to be so strong and I would do what ever I had to do to protect and care for my baby, but the fact is that I really want to go home and have all my kids, and my family together. I hope that is His will. I hope that this little miracle baby is on the (fast ;-) ) road to recovery and that soon we will be able to travel home to Missoula, together. In four months....yes we have been here four months.....I have NEVER felt that going home was within reach. TONIGHT I DO! :-)
This is the verse that He has given to me tonight.
Psalm 145:8
The LORD is gracious, and full of compassion; slow to anger, and of great mercy.
Blessings,
Leah

Wednesday Night

Hello,
Just wanted to give you all an update and let you know what is happening. I am really feeling like Joshua is getting somewhere. Dr Salerno has SUCCEEDED in getting Joshua into the cath lab. He will be going in tomorrow late morning. He is the 3rd case. Dr Jones (whom I have not met) will be doing it. Usually Dr Johnston does Joshua's cath's but he wanted to go on vacation or something. :) Please keep Joshua in your prayers!! This procedure is not without risks but we feel that it is a necessary next step. We are really hoping to determine the reason for the plural effusion. One of the things that they are thinking is a possibility is that there is a narrowing in one of his SVC's. They kind of work as the drain system for the fluid that we usually create and reabsorb around our lungs. If these are narrow, then the thought is that Joshua's body can't absorb the fluid. If this is determined to be the cause then a stint will be placed to open that up. It is one of those bittersweet things. Yes it will "fix" one problem but in turn creates another one. But I will let our Lord handle all that. I am not at a point that I want to worry about it. :-) I am very happy that if nothing is found during the cath....Dr Salerno has actually talked to me about....A PLAN! LOVE IT!! :-)
So, today was a much better day for our Joshua. He slept a lot but then he woke up happy. I gave him a bath and he smells so good. I did get a little water under his PICC line dressing....which in my defense was OPEN, so we are waiting for the IV team to come and redress it. He was talking and he totally discovered his toes! It is so fun to watch him play and do "normal" baby things. I have also been working with him a lot to strengthen his neck and back muscles so he can sit up. He is doing very good with that and really enjoys it. There have been a couple times in the last couple days where he was laying there and then would try and sit up. He can get his head about 4 inches off the bed. He has VERY strong tummy muscles. Must be from holding his legs in the air all the time.
Please pray that all goes well tomorrow. It could be that he has to go back to the ICU. He usually has some issues coming off the ventilator so I will not be shocked. Only once has he come back from the cath lab off the vent. One other time he had arrhythmia's during the procedure, please pray that he does NOT have them again. That was very scary!
Love and blessings,
Leah and Joshua

Monday.....LONG Monday

I really REALLY hope that this is not a preview into the week ahead. It has really been a long day. Poor Joshua is not comfortable. I don't know what has him so blah....but something is not right. He has not napped more than a few minutes at a time and he is obviously VERY tired. He has been MEGA gaggy ALL day. He is actually quiet right now and we are praying that he stays asleep so he can get the rest that we know he needs. There weren't any major changes today. The cath lab called to have him go down but the nurses were not aware of the cath so they cancelled it! UGH. Maybe because of the C-diff??? The dr's said yesterday that they didn't think that would hold him back from the cath, but maybe it did. It has to get done this week because I told them they are NOT to do it while I am in MT. So it is either this week or Friday of next week.
Oh I forgot to mention that I had a SUPER birthday surprise. Well 2 actually. My cousin Ben showed up to the hospital to see us on the morning of my birthday. We had a really nice visit and it was so nice to see family. He didn't know it was my birthday, but it was awesome timing. Also, I have finally got in touch with an old friend of mine from when I lived in Victor. The last time that we had talked was the spring after Trevor was born. I can't wait to catch up with her. :)
Please continue to be in prayer for Joshua and also for the Lara family. They are a family from AK. Their little 5 year old boy was hit by a drunk driver last month. I met 2 of the brothers over at the house. They are in the room across from us. Little Phillip was next door to us but there was a code blue in his room. I don't know what happened but please be in prayer for this entire family.
Oh another update....Miss Evett who was in the room next to Joshua for a long time in the ICU is on the floor!!! I saw and her parents making the change this afternoon. PRAISE THE LORD!! She has had a very long journey and I am sure that it is not over but it is so nice to see her making the transition. Please pray for her continued health.
Thanks for checking in.
Blessings,
Leah

* Brooke~ I hope everything is ok with you. Haven't seen you in a while. Hoping it is because of your schedule.Just wanted to let you know you are missed. Love,
Leah and Joshua

Sunday

Hey Friends,
The cultures came back and it was determined that Joshua has C-Diff. It is basically an overrun of the bad bacteria in his gut. (The good bacteria was killed from the antibiotics for the chest effusion.) So, they started him on more antibiotics to fix that. I am REALLY praying that this little tummy yuck is the cause of the fevers and the retching. Other than that, he seems to be feeling ok. He is talking and smiling with grandpa right now. :)
Dr Salerno is the doctor on rotation this week. He came in yesterday. I really like him too. He has contacted Dr Johnston about the cath. Hopefully it will be sometime this week. When he came in yesterday to meet Joshua he stopped immediately in his tracks and just cracked up. He said he was a real brut and for as long as he has been in the hospital didn't look anything like what he had expected. He really liked him and said he thinks it will be his new favorite patient. I told him to wait until he was awake and smiling to make that decision. I am pretty sure that he will win him over.
We also have a new Sr. Resident starting his rotation this weekend. His first name is Danny.....haven't been told his last name. He will be on for an entire month. He has been really studying Joshua's history. We joked and decided that that his goal this month is to get us out before they switch Sr residents. He is a very nice Dr also. I am feeling good about his care for this week.
Well yesterday dad took me out for my birthday supper to Olive Garden. It was just as great as I wanted it to be....but we were too full for dessert. :) He wasn't so sure that waiting in line for a 1/2 was worth is.....but I do believe he thought that it was, even for pasta.
Today is Trinity's second b-day! :) Hard to believe. I did go get her gifts yesterday and I must admit...it was very fun shopping for girlie pink things! :) We will celebrate her birthday as a family later.
Talk to you all soon.
Love,
Leah

**I took these pictures yesterday after he pulled out his ND tube. We had actually decided that we would not place another one for a while. He took hid medications orally and LOVED them. But about 1/2 later he puked them all up so another ND tube it is. We will probably make changes when he is feeling a little better.

Friday~ UGH

Well our little man is not feeling good at all. He has had high fevers for the last 24 hours. His heart rate just spiked up really fast when he was asleep to 212. They just finished with an EKG. We have cultured all that can be cultured. Infectious Disease is helping us take a thorough look at him to make sure that we don't miss anything. He seems ok, pretty tired. He kept me up all night long. My dad came in rocked the crib so I could get some sleep this morning. That was awesome. :) I really needed it.
He is settled now....heart rate is actually down to 174. Through all of this there has been no respiratory distress. (Praise the Lord!)
Please keep him in your prayers!
I will keep you updated.
Love,
Leah and Joshua

Wednesday

Hello friends, Figured I better update while it was on my mind. :)

Joshua has had a really rough night...and day. He is retching and puking again. It slows when he is asleep but it pretty regular when he is awake. He did muster up a few smiles for us today even though you can tell he feels horrible. He just went to xray to see if there is something that could possible be causing it. Maybe some hiding fluid.... He has had this (often) in the past but we usually could determine the culprit. Nothing is jumping out at us this time. Please pray for comfort (and healing of course :0) ) for our Joshua.

This picture was taken today while he was playing with his toys. Happy between retches!

The girls came back with Tammy last night and we went and took in the Beach Boys Concert! It was a lot of fun but I think that the person who enjoyed them self the MOST.....MISS TRINITY! :) She danced herself to sleep. I held and danced with her through the whole concert. (I can tell you my arms are KILLING me today!) She fell asleep close to the end. When we started to walk out I had to readjust her and she woke up all sweaty. She looked at us with a HUGE smile and just kept saying "we danced"! :) She called James when we left and talked his ear of for quite a while. I forget the the rental truck (Dodge Ram Hemi Club Cab ;-) ) actually is in WA time and not MT time....so he was sleeping when she called him, but I am pretty sure he enjoyed talking to her anyways!

He is Trinity in mid-dance~

A week already!

Wow....again.....I am sorry that I was neglectful in updating. Time just gets away from me sometimes.

Let's see, where to start. Joshua is doing pretty well. No major changes one way or the other. We have stopped feeding him and now he is getting all his nutrition from TPN and Lipids again through his IV. The idea was that this would stop the leaking chest tube. Well it didn't really work. Maybe a little but we are not certain. I am so happy that Dr Chun is back on this week. He has really reviewed Joshua's data in the past and I feel knows him well. He came in and talked with me at great length today. I didn't feel that he was rushing to get away from me but rather working with me to see if we could come up with some ideas. It was so nice. He will be on service all week. :) He is going to see about the cath for the end of this week or early next week.
The blood sample WAS CONTAMINATED! Thank the Lord for that miracle!! :) His UTI was also dismissed as contaminated. He will finish the round of antibiotics to cure up the chest infection. He seems to be feeling much better. He is high 5'ing and blowing kisses like crazy!!

Betsy, one his his nurses from the ICU, came up to visist tonight and caught him awake. He was SO happy to see her. It was awesome. He was so full of smiles and giggles. He played with her for an entire hour and then decided that he was all tuckered out. I am hoping that he will sleep all night tonight. I really need the rest. He was not happy this morning. He went to x-ray at 5:30 am and that is when I finally fell asleep.

Little family update. The girls are in Aberdeen with Tammy for a bit. They got to go to the races on Saturday night. Sounds like they had a blast! We will all be getting together tomorrow to go to Safeco Field to enjoy a concert. We are going to see The BEACH BOYS! I know, I know, a little "old school" as the girls say but one of my favorites....come on, they helped define Rock and Roll!! :-) I am so ready to go enjoy something fun.

The newest news, as some of you may have already heard. Dad and I were coming back from supper last night at 9 pm. Lost my transmission! UGH. With James' help I remembered that I had towing as part of my insurance. I called them at 9:05pm. Tow truck, a flat bed, as I was reassured was on the way. Well....FOUR hours later a tow truck arrived. Not a flat bed and not really equipped to take 2 passengers. They had NO clue what they were doing and I was pretty irritated. Being married to a tow truck driver you learn a thing or two. I was not going to agree to them pulling out my drive line. They couldn't understand why my battery was dead! You know sitting on the edge of the road in Seattle for FOUR hours with your flashers on can certainly kill a battery. So it was a real hassle to get loaded. An hour it took to hook up and go less than 2 miles. Trevor, my 7 year old, could have hooked that baby up MUCH faster. And don't think I am kidding....he could of! ;-)

So needless to say we finally got it back to the house at about 2:15 am. I feel EXTREMELY BLESSED that I purchased a premium warranty with no deductible when I purchased the truck. Who would have guessed that I would have actually used it! I never did use the one I purchased on my van. The savings in this alone will well pay for both warrenties! I contacted a Chevy dealer in Lake City (Bill Pierre Chevy) and they are helping me with EVERYTHING! They came and towed it, are setting me up with a rental, and helping make sure everything is handled as soon as they can. Randy is the service guy and I can't tell you how happy I was to talk to him. Oh, and I don't want to forget to tell you that to top all this off.....the tow truck driver backed into my car. So now....it will also be going to the body shop. *sigh*

Talk to you all soon!
Leah

Please pray for contamination!

Yes, I know it is an odd request.
The nurses just came in and told me that the lab called and the blood that was drawn yesterday grew bacteria. They are going to pull another sample tonight and send it in to be retested. I was NOT impressed with the lab techs who did the pull yesterday. They poked him several times and to top it all off....after they left, my dad pulled the sharp out of his bed!!! :-( YIKES! That could have been BAD news.
So they will pull another sample and I will be praying that the first one was contaminated! I am not so sure that MY heart can take another set back of this magnitude.
*sigh*

Wagon Ride Wednesday

Today we got to take Joshua out in the wagon for a WHOLE HOUR!!! He LOVED it!! :) He was so full of smiles and talked a lot. Of course....when the camera came out he wouldn't say anything and toned his smiles down. I will try and get a slide show put together this weekend. I also have a video I would like to try and post. We will see how I am for time.
Joshua has had a real good day. Having some withdrawal tonight but I am just watching to see if we need to give him a bolus or if he is working through it ok. He had an echo and I am waiting for the results of that. I am assuming that will be tomorrow.
My dad is driving back to Missoula for a day or two. Please pray for safe travel as he comes back and forth.
The girls seem to be having a nice time. Trinity has her moody periods when sis is around but does ok when she is one on one. I think that is usually the normal. Kids are always more bratty when they are around their parents. Eryn and Shyla have been doing good and are showing their mature and responsible sides...got to love that. I am so glad that they can all be here with me. I really miss James and Trevor and I can't wait to get home to them.
Blessings,
Leah

Tuesday Sept 9th

Yesterday went rather well for our boy. He smiled a lot and even laughed when the girls were playing with Trinity! It was so fun. Today he is feverish and feeling blah. :-( They are going to run cultures again and watch him closely. I figure if you take one step forward and then one back, at least you are no better or worse off than you were the day before! Just the same!
He looks great and I will try and get some more pictures of him posted soon.
The plan is to keep an eye on him and see what he does. They will schedule an echo later in the week. The Dr's were much more helpful today. Although after I threw my tizzy fit yesterday they came in SEVERAL times to see how it was going and to make sure that I was ok with everything. :) In the ICU, I just never want Joshua to be the hottest fire. I am ok with taking a back seat. On the floor......as far as I am concerned Joshua might as well be the ONLY PATIENT.
(Maybe hitting the 100 day mark helped fuel the change in my attitude!)
Blessings,
Leah

Monday

Good morning,
Just an update to tell you that Joshua is doing pretty well this morning. He has been really happy despite the issues. Yesterday we worked on saying "mama". :)
I don't have much of a medical update even after rounds. I am NOT impressed at all with how they were handled. No one seemed to have any idea of what has been going on with him. Then the Dr abruptly said that they needed to move on and that was that! UGH. The nurse said that she would have the Dr come back and talk to me to let me know what the plan is. It better damn well be something that I agree with or someone is going to have to deal with a very tired, grumpy mama bear!!

Saturday Afternoon

Well, the week went fast. We were moved again to a private room and Joshua was placed on contact isolation. He spiked a temp so they took samples (urine, stool and chest fluid) and moved us. The preliminary result shows that he has a staph infection in the fluid around his lungs. This comes as no surprise to me based on the issues that I had seen with the drain. There was major leakage and I say....if something is coming out....something that get in! I had noticed that the fluid changed color and was told he would be VERY sick if that fluid was infected. My mommy instinct was correct. Today it was confirmed, infection. So hopefully they will get the resistance results soon and start him on an antibiotic before he gets too much sicker.
He has slept a lot the last 24 hours but prior to that we had some awake time. He even smiled and let out a little giggle when we were playing with him. We would LOVE to see some more of that soon.
My dad and the girls arrived. It has been really nice to see them. Trinity has really changed (or matured I should say) this summer. I am glad to report that she is still Nana's girl. :) And now that she talks....well she doesn't shut up! I LOVE IT!
She reports that she will be going home to Nana's when "Josh-a gets go back".

Tuesday Night

So, here we are almost 12 hours into our day in our new room. I am remembering ALL the things I don't like about being out on the floor. :-(
Joshua is doing ok. He had a special visitor from the ICU tonight. Betsy came to see him and he was interactive with her. He even managed to blow her a kiss and a half grin. He also talked a bit to grandma Betty tonight. I am pretty sure that the teething is the issue with his crankiness.
We are still working on feed issues. They started and stopped the Lipilstart again today. I have asked....and kinda begged for them to get the Monogen. Then we will know if the feeds are the problem. I know he tolerates the Monogen just fine. We are still waiting to hear from the nutritionist but we should have it tomorrow. (hopefully)

Thank you for your continued prayers for Joshua's health. I believe that prayers are certainly being heard. He is so precious and perfect!

The girls will be here on Thursday. My dad is also coming here in the next day or two. The plan is for Eryn to come with him and keep Shyla company for a bit. I think it will be good for all of them. Please pray for safe travel as they all journey this direction.

I also ask for a special prayer for James who is dealing with a lot of pent up emotions. He feels like he has no were to turn right now and just needs some love and prayers sent his way.

Love and blessings to each of you who are still following our little peanut.
Leah for the Garrison Family

Tuesday September 2nd

The day our little man Joshua.......WENT TO THE FLOOR after 96 days in the ICU. :-) (97 in Seattle)

Yes, you read right.....we were just moved to the floor. Room 4020.
I will get a new phone number for you all as soon as we get settled in.
Love,
Leah and Joshua

Labor Day Monday

Hello,
Just a quick little note to let you know how things are going. Joshua had a rough weekend with emesis (throwing up). He isn't getting anything into his tummy, so it is just mucus and bile. He has been pretty miserable. We just turned off his feeds and will start him on IV fluids to see if that helps. It will help determine if it is the new formula making him ill or possibly withdrawal.
He is supposed to go to the cath lab this week. If it is in the next day or two we will remain in the ICU. If it longer than that, then the plan is to send us to the floor.
I am really ready to go home and I know Joshua will be happy at home too. :) Hopefully it is in our near future.
Blessings,
Leah

Friday

It is so hard to believe how fast time can get away from you sometimes.
I am just downloading some pics for all to see. :0) Check slideshow at bottom of page.
Joshua is doing pretty well. The drain is still in place. He slept all day yesterday and a good portion of today. I stayed a the house all day so that I could attempt to get caught up on some work. I think I will be working most of the weekend. Chances are he will sleep, so it will work out well.
His #'s are great and he is off the oxygen. The milranone also was turned off today. So far his BP is fine. He seems to really be perking up.
Blessings,
Leah

Chylous

That is the verdict. 70 cc's have drained so far.
He did very well during the procedure. He was given drugs to make him very tired and forgetful but they don't completely knock them out when they put in the drains because they want them to breathe on their own. He was a little mad about the restraint holding his arm in place above his head than the poking. He got an extra bolus of delaudid and is sleeping soundly right now.
He has great #'s.....
HR: 145
BPM: 29
O2: 84
Maybe he can loose the oxygen again. (It was gone for 3 days but when the effusion built up his sats kept dropping and he had to go back on.)
They can't get Monogen (formula) for him until morning so they are just going to start fluids for him tonight. I will let you all know how he is doing in the AM.
I am waiting for Dr Law to come and talk to me. They are not sure what caused the effusion. The thought is the change in pressures. They may want to collect more "data" by doing an echo, but that call will be made by Dr Law. It is, unfortunately, very busy with VERY critical patients tonight so he will be here late and was asked to consult before leaving.
Leah

Update Wednesday

They will be tapping his chest at 6 pm PST. They are not sure if they will be placing a drain tube or just draining what is in there. I will let you know how it goes when it is over.

Wednesday~~~ DAY 91

*sigh* Well.....Joshua was doing great for quite a few days. I have some great pictures that I need to get posted. Hopefully tonight or tomorrow. I am pretty busy with work right now, but will try and get to it soon.

We just found out that Joshua has a lot of fluid in his chest. They are going to tap him and put in a drain. This will make him more comfortable and will make it easier for him to breathe. The bad thing is where the fluid is coming from and the cause. Dr Baden is concerned that it is coming from his valve. He is consulting with the cardiologists now. I was really hoping that we would be able to start our migration to the floor and go home but this will certainly set us back.

This all just progressed this morning. He was doing so well!
Thank you for your prayers of healing and comfort for Joshua!

Blessings,
Leah

Thursday

I actually can see a speck of sun. :) It has rained non stop here for the last three days. I didn't realize how much of an effect that has on a person emotionally. In Montana we don't have days that are so gray, it more or less just and goes and usually doesn't last very long.

Joshua is still about the same. He has a little more fluid on board which from the mommy perspective is a good thing. I have never looked at him and seen a sick baby. This week, I have. He looks like he has a sick heart. It has been a very hard transition for me. Almost like a reality check. We are still unsure as to what is happening. Maybe withdrawal, maybe his heart is just really sick, maybe he has an infection, maybe....maybe....maybe....


On a positive note. He looks like he is breathing easily. His #'s are pretty good. Heart rate is still higher than we would like and he keeps getting these darn fevers. You will see our cooling system in the picture. (He actually really likes the cool cloths. He like the head one over his eyes....strange.) Over the last several days he has been throwing up often. It appears that he had some changes in his medication again that we will need to discuss. Since yesterday it seems to have subsided for the most part.


I will keep you posted.


Leah
This was still on the vent. It was actually taken right before he was extibated.
This one was taken yesterday. He hasn't been awake much since he was extibated.