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