Saturday, August 30, 2008


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.

Wednesday, August 27, 2008


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.

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!


Thursday, August 21, 2008


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.

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.

Tuesday, August 19, 2008


Just a quick little message to let you know that Joshua is doing ok. He continues to spike fevers. They are pretty sure they are just related to heart failure. He has been really urpy today. When I got to the hospital today, I was a little worried. He was not looking too good. I think they pulled too much fluid from him. He reminded me of a wrinkly old man, not the robust, round chunky baby I am used to. I could even see his neck.....didn't know he even had one!! =)
His sats are good, still in the 80's. He is not having any issues breathing but he continues to cough up a lot of yuck. His heart rate was a little higher today. More in the 160's - 170's. He was even in the 180's today when his fever spiked. He hit 39.3 and we pulled out cold cloths. He came down quick so we didn't need to bring out the ice packs. I have a few pics that I will try and get up later this week.
I can't believe that summer is already coming to an end. Trevor will be starting school soon. Can't believe that I have been here from the last day of school to the first. NUTS. I am sure that he will do well, and I just keep thinking I have many more first days of school to experience with all the kids. I am trying to get the girls up here for a bit. I miss them both BUNCHES! I have only seen Shyla once this summer and I haven't seen TD since we left in May. I hate having my family spread all over, but I know that we are all strong enough to make it through this. We all just want Joshua to be all right. Please pray that he continues to heal and that the Dr's will have some direction as to his care. Also please pray for our family as we continue to struggle through this journey and that we can all find peace and the strength to ask for help when we need it.
Leah, for the Garrisons

Monday, August 18, 2008

Monday Day 82

They extibated him about an hour ago. He is doing great! He is satting 80+%, heart rate in the 150's, bmp 33-37 and he does have a mild low grade temp. All in all I think he is doing very well. He is sleeping soundly, as he has for several days. I have asked them to wean the Ativan a little more so that he won't be totally snowed.
Dr Mazor is the attending on shift. He is still very worried about the regurge in his valve. He said that he is still going to be very watchful over him until he feels confident that he can go to the floor. When quizzed about how long he thinks we need to stay in the hospital he said it would be good to be home before Christmas. It was very unclear to me as to whether he was joking or not. I didn't have the heart to ask.
James and Trevor made it home safely last night. Trevor was a little freaked out on this flight. He said "it was bumpy and the plane kept dropping out of the air." :-) James said it was fine.
Love and blessings,
Leah and Joshua

Friday, August 15, 2008


Hello Friends,
It is BLAZING hot in Seattle today. It is only supposed to get hotter. I hear the coolest place to be over here is Aberdeen! :) (Tammy send some cool over my way.) I think I am going to melt. I totally feel like I have missed summer. Now, I must admit sleeping in the air conditioned RMcD house beats my 95 degree home :) I have had some wonderful opportunities to take Trevor to see the zoo and spend a little time at The Locks and the beach so it doesn't feel like a waste, but I had so much more "planned". I hope you are all taking a little time to enjoy the beautiful weather and enjoy the rest of summer. (Our Alaska friends had FROST the other night and can see snow coming down the mountain!! So enjoy the nice weather while it is here.)
Joshua is still on the vent. He will not be coming off today. His xray was worse this morning then yesterday. I have not heard any more about the ultrasound. My guess is if they don't make it today they will reassess him in the am and decide if they need to move forward with that. Right now he has a high fever 102.5 and is in and out of sleep. His heart rate is in the high 160's now because he is so hot.
James and Trevor will be flying home late Sunday night. Jackie will be coming down next weekend and she will bring chubbs back with her for a few more days before school starts.
She is going to take him to SILVERWOOD with her kids for vacation. WHAT FUN!! I am SO jealous. I would love to be going. I think when they get here I may sneak them out to Golden Gardens for a little while. :)
Thanks for all your continued prayers.
Leah and Family

Thursday, August 14, 2008

Day 78 (Thursday)

So. I haven't been very good about updating this week. I have not had a good week and it just keeps getting worse. :-( I will spare you the details.

Joshua is hanging in there. He is still on the vent. His xray was really bad this morning so they have started him on chest pt again. They have increased all of his vent settings because he is really having a hard time breathing. He just doesn't look like he feels good again. He has a fever and is very cranky for Joshua. His heart rate isn't too bad, it looks like these issues are respiratory related.

Please pray that he starts to feel better and can come off the vent soon.

HAPPY BIRTHDAY DARLA!! :) (I love and miss you)


Friday, August 8, 2008

Friday Morning

They decided not to extibate him this morning. Possibly later in the day. His heart rate jumped up about 5am this morning. We will have to wait and see what the day brings us.
They started him back on the epi and brought the dopamine down just a little. They gave him some lasix today and he is peeing a river according to Brooke. We are SO HAPPY to have her back today. She was also here taking care of him yesterday.
His #'s right now:
Heart Rate: 166
Blood Pressure: 100/53
MAPS: 71
O2: 77
Temp: 37.8 (100.4)
He is resting quietly right now. He has been awake a little bit the last couple days. I even got a big smile yesterday. Today you can tell he is again feeling a little funky.
Please pray that the Lord heals his little body.
With love,
Leah and Joshua

Wednesday, August 6, 2008

So much to be thankful for

Joshua came through the surgery just fine. He went back at 8:30 this morning and didn't get out until 2:45pm. It took longer than anticipated because he had 2 SVC's that had to be connected. (The superior vena cava is a large, yet short vein that carries deoxygenated blood from the upper half of the body to the heart's right atrium. from wikipedia) Normally we only have one! This should really help his heart function. :)
His heart function right after the surgery wasn't very good so he is on Epi and Dopamine again. It has improved but he will remain on those for a while. He is currently satting in the low 80's high 70's. His heart rate is in the 160's. The meds that he is on is speeding that up a little. He has pretty good blood pressure. He is running a fever of 102.9-103.2 currently. He is on the vent and has a drain tube placed. They are going to try and keep him pretty doped up tonight and probably tomorrow. I will keep you all updated.

I just got a call. His fever is now up t0 104. They gave him a muscle relaxer and put him on a cooling blanket. It is coming down. :)

The Lord is good....(like we didn't already know that!)



* This picture was taken about 45 minutes after he got to his room after surgery. I was expecting him to look quite a bit worse than he did.

Tuesday, August 5, 2008

FREAKING OUT out......

I am trying (well my wonderful mother is actually) to get James and my dad here for the surgery. Hopefully it will all work out. She may not be able to get off work but can possibly come up the following day. I was not really prepared for this.

Please pray that all goes smoothly tonight. Please pray that I can keep it together. I am trying to race to get a report finished and I am literally shaking..... *sigh*
BUT~I am so happy that he is going to have it done and it should really help his heart. :)

Monday, August 4, 2008


I just got news and the Glenn is a go!! :) It will be sometime this month. There are only 2 surgery dates available for the whole month. They said they are going to rearrange the surgery schedule and will let me know when it will be. YIPPEE
Dr Hardy is coming to Seattle and will come and see me and Joshua tomorrow.

SPECIAL PRAYER REQUEST~ My dad is going into surgery in the next 1/2 hour to have his eye removed. Please pray that it goes smoothly and that ALL the cancer is removed. Also, prayers for a speedy (and not too painful) recovery. I was hoping that he could heal up and come and stay with Joshua and I for a bit since he will not be working. (Although maybe we will be on our way out of here this month!)


Sunday, August 3, 2008


Just thought I would drop you all a quick update. Joshua was started on antibiotics today. His eye is so bad. It is blood red. Speaking of blood....he is also spitting up some blood. :-( I am going to talk to Dr Mazor about that tomorrow. He had the same problem not long after we got here. The blood is just from his stomach. His foods are going into his intestine and bypassing his stomach right now because he keeps gagging/puking and we don't want him to choke. He did have an echo done so they are loaded with info and hopefully can tell me ......what???....A PLAN! :)

It has been a long day. I am wiped out. I spent some time with family playing at the zoo. (James has 2 sisters that live over here in the Greater Seattle Area.)We had a super time. It was a great day, although I missed Joshua terribly, it was nice to get out of the confines of the hospital and away from work for a bit.

(Note for Joshua~ Your aunties Tammy and Debbie, uncle Glen and Cousin Briana came in to see you today. Briana noticed right a way how light your hair is getting. You were born with reddish brown hair and now you are sporting some great blonde highlights. We will have to wait and see what color hair you will end up with. Auntie held you for the first time in quite a while. She really enjoyed it. You are getting so big. She first noticed that you are loosing your baby look and look more like a big boy. Part of me is sad to see you growing up so fast but I know that we will have a lot of fun together when you get bigger and out of the hospital. I was holding you when your auntie Debbie walked up to kiss you. You leaned WAY over and snuggled on her shoulder. You were very happy. I think that her voice reminded you of grandma Betty's. I love you peanut. Mom)

I hope this all finds you well. Have a good day!

Joshua and Auntie Tammy

Saturday, August 2, 2008


Some pictures to share. (Smiles before cath, hanging with Brooke, and HAPPY FEET)

Friday, August 1, 2008

Friday~After Cath

Just a quick note to let you know that Joshua is back from his cath. He is looking great but is pretty tired. He is quite the charmer and made a few more friends while he was over there. (When they first took him to the cath lab I walked with him and many people asked where we were going....thinking possibly the floor. The anesthesiologist made a comment that you have been here too long when that many people inquire where the patient is headed.) :) One of the anesthesiologists came back and said that he did really well except "he turns VERY purple when you piss him off". LOL Evidently he wasn't very impressed with them when the y tried to wake him up from his "nap". Joshua is a boy of many colors....literally.
Dr Johnston came in and said that he thought everything looked good. He had decent pressures and the leaking around his valve did not appear as bad as it was before. His PA's are growing. They are bigger than his shunt which measures in close to 6 mm. He will need to come back to Seattle to have his stints enlarged when he reaches 22 pounds. I would like to think that we will have to come back. He is growing fast so I suppose we could still be here, but I like to think that it will be another trip out here.
All in all it sounds positive. They will review him in conference again on Monday and someone will come and talk to me. I want a PLAN! I am starting to get rather impatient and emotional. Being away from everyone is starting to wear on me. (Although it could just very well be the long work hours....I think I need sleep.)
I have some more pics to post this weekend. I am hoping to get them up tonight when I get back to the house.
I hope this finds you all well. Enjoy your weekend and tell your kids how much they mean to you.
Love~ Leah and Joshua