Monday

Wow. Lots to tell you today.


Yesterday Joshua had a wonderful day. He was smiley and playful for most of the day and early evening. As 7 or 8 pm rolled around he became very irritable and cranky. He spiked a fever and held on to it until just recently. They are not too sure what the deal is and why he is again running a fever. He is still on the antibiotic and they ran cultures again last night. There is talk that being on a Lasix drip can sometimes cause a fever. (Something that is still in debate.....but an idea at least.) I was here at the hospital much of the night sitting with him because he was so crabby he wouldn't sleep. We tried several things and nothing seemed to sooth him. Not even huge doses of drugs. UGH.


So now for for the good news......see anything different??

HE HAS BEEN EXTIBABTED!!!! No more ventilator....WHOOOHOOOO! :-)

After much discussion about how all this was going to be handled, they decided best plan was to get it out. The last few days he was creating so much mucus that he was making himself throw up. They are also not 100% sure that the reason the H-flu cultured positive again was because of the tube. So, they took it out!

After it was out he "talked" for quite a while and played with his hand that is now not restrained. He found his thumb, explored with his binky and got to run his blanket on his face all by himself. Now that he is extibated he sounds very sad when he cries. After not hearing that sound for a month it was rather heartbreaking. This all brings us closer to the day when I will have a chance to hold him again.....The hope is just a couple more days. I think they should let me at least hold him for a little bit on his "Half Birthday" this Friday if we are not there before then. He is statting in the mid 70's and looks very comfortable. (Hooray....just hit 81)

There is not a long term plan in place yet. Dr Jeffries said yesterday that the surgeons want him to grow weeks....possibly months if he can. They think that the stints should buy us that time. He did say maybe he can grow for a couple months AT HOME! That would sure be nice but I am not putting all my eggs in one basket.

I have had several questions about our friend Natalie who was here for her glenn. She is doing great and I saw a pair of very happy parents escorting her out to the floor earlier this afternoon! :) I don't know how realistic this is but I would LOVE to see them all be able to go home as a family this weekend. She is looking good....so maybe!

Cindy and Murray came up to see us yesterday. It was very nice to see them. Tammy and Glenn will be coming up for a visit tomorrow. They will be very happy to see the progress that he has made. (Geez sis....you may even get a smile!)

Love, Leah and Joshua

Saturday Afternoon

Hello! I know that I didn't post yesterday. :( Sorry.
Joshua is doing super well. The hope is that he will be extibated tomorrow! YEAH!!~:-)
They dropped his Dopamine to 2.8 but still haven't turned it off completely. I am hoping to catch Dr Jeffries today to see what the deal is with that and his ECHO from yesterday. I still don't have all the results. I heard it was good....but I like specifics. His arterial line is just about to stop working and the only reason that it is really in is because he is still on the Dopamine and they want to be able to have a continuous and accurate blood pressure. BUT when the darn thing comes OUT I can HOLD HIM!! :) It has been almost a month since I have been able to hold him in my arms....way too long in my opinion! So I am really looking forward to those changes. The bad thing about loosing the arterial line is that he will have to be poked twice a week for blood draws. I say that being able to be cuddled by mom trumps getting poked! And since he can't speak to say other wise....I win. :) He has been awake a lot the last few days. You can see his little personality peeking out through the drugs. Much better than just watching him lay there.
All in all things are going well. Natalie had her "Glenn" yesterday and seems to be doing very well. I had dinner with her parents last night. It was very nice to share a meal and a prayer. Thanks Tim and Angie.
My friend Cindy from work will be up here to spend some time with us tomorrow. I am really looking forward to that.
I will update more as the info comes available.
Love~Leah and Joshua

Thursday

PRAISE THE LORD!!

Psalm 118:24 NIV • This is the day the LORD has made; let us rejoice and be glad in it.

Well we have good news to share today.

First of all I want to send an update to let you all know that my dad's cancer test came back CLEAR!! They have tested all that they can and with the exception of his eye he looks to be cancer free! WHOO HOOO. He is however struggling with high blood pressure so he is working on getting that into a better range. He goes in daily to have it tested and they have started some medication. He has been walking about an hour a day...which is an hour more a day than usual! :) And is still working on his diet. Mom is now cutting the salt. Dad thinks she pretended to pass the salt shaker over his supper last night. ;)

Joshua is having another spectacular day! :) The nitric is now OFF! He is currently at 75% O2 saturation and his heart rate has been much lower. He is ranging 112-135 at rest. His blood pressure has been hanging about 85/50. This is good because to maintain 75% O2 before he had to have his systolic pressure over 100. He is looking super and is quite the wiggle worm. Brooke, his nurse last night, said she things he biked about 10 miles in his sleep. They are also stopping his lipids (fats), and his dopamine is now only at 3. Yesterday they stopped the heparin drip and he returned to just getting 1/2 baby aspirin. So lots less going in his veins the last few days.

So I hope that you will all take a few moments today and send praise and thanks to our Lord who has made all this happen.

Take care,

Leah

Tuesday (Supper Time) UPDATED

Just so you know we are making a room change as they need the isolation room. I don't know what room we will be in but I will update you as soon as we get settled. We will probably be sharing a room with someone.
Joshua is doing SO WELL this afternoon. His O2 sats are in the low 80's!! They are going to leave him as is and start some more weaning tomorrow. Dr Jefferies came in and said that they are not going to take him off the vent yet but they will work on getting him closer to that direction. He just keeps coming in and saying that he is glad that he is doing so much better but he sure wishes they knew by he bounced around. He is pretty sure it is just because he was sick. He had a couple weird things with this blood pressure in the last hour or so but nothing else is affected so we think maybe he just moved his arm and kinked the arterial line. Other than that he is doing so well. He has had a lot of awake time today without getting all restless so that is SUPER! GO JOSH GO! :)
Leah

UPDATE:
*****We are in Room 4268-2 This is the room that we started our trip in. We were in -1 then though. We were in -2 when he came back to the ICU from the floor on the first trip when he had the Chylus Effusion. I like this room better because I sit on the couch next to his bed as opposed to behind it. Much easier to keep a good eye on him.
It is so funny to see the nurses oggle him so much. Of course I think he is the cutest thing but all the nurses really like him. Having him turned around in his bed has caused quite the commotion. (Usually that signals that they will be going on ECMO.) Of course this is NOT the case with Joshua it just happened that he was turned around in his bed. Now we just switched rooms and we have had several nurses asking where he went. His nurse earlier today was Maree. She is super. We had her a few times the week that James was here. She just had a friend come meet her for lunch and she brought her up here to look at how cute Joshua is. :) When he is able to be held I will have to find her so she can hold him. She has wanted to pick him up so bad. Of course that will be after I had my fill...It has been 3 weeks since I have been able to hold him. :(
Well off to get some supper.
Leah

Tuesday Afternoon

Jeremiah 29:11 NIV "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. "

Although we never know what the future holds, we know that He has a plan for each of us.

Joshua is doing super today! They changed his antibiotics to a different one that has been very effective against H-Flu. They weaned his Nitric down to 10% and his oxygen is only at 45%. His sats remain in the mid 70's. Dr Jefferies wants to start weaning his sedation, slowly, and see how he handles it. So far he has been able to wake up and look around without getting too upset. We visited for about an hour and then he drifted back off to sleep holding his "so soft" (Blanket).

He looks so good today. Better than he has in the last couple weeks! They stopped his chest pt because both of his lungs are clear today. He has no puffiness in his eyes and I couldn't be more grateful!!

My dad's blood labs came back yesterday PRAISE THE LORD they look good and cancer free!! He still has a ct scan this week so please continue to pray that it is clear also.

Sometimes I just have to stand back and look at life's circumstances and remember that even though we have had some bumps (mountains, and deep ditches) in our path we still have a VERY blessed life. For all of this I am grateful.

Much love,
Leah and Joshua

Monday's Update

Just a quick update on our Joshua. He is off the VEC now. He woke up and gave me a couple small smiles not huge big happy ones but smaller ones. The kind of smiles that say to mommy "I just don't feel too well." I enjoyed them none the less. He is pretty heavily sedated but woke because they were doing his chest pt.
The cultures came back and the H-Flu is again rearing is ugly head. UGH. They started the "just in case" antibiotics Saturday and we have a feeling that is why he is doing better. They are going to do a study to see what the best course of antibiotics will be. Those results won't be back until tomorrow. Chris (she is a fellow in the ICU) came in and said she is still not happy about where he is but we just need to keep plodding through. The consensus of the cardiac conference was to not forward with the glenn now. That was before they found out that he has H-Flu again, so good decision.
His left lung was a little less hazy on today's ex-ray but the right lung is worse.....well it was never yucky and now it is. So we are back the waiting and recouping.

Leah and Joshua

There is a new slideshow at the bottom of the page. I found a tool that I like much better than the other one.

Sunday Night

Hello family and friends,
First of all let me say that Joshua is good. But I feel I must warn you now to grab a tissue. It has been a very emotional weekend for my family. It have been very tearful for the last couple days and I am sure that it will come through in my post.
First I will start with our favorite baby....Joshua. He still remains very feisty which is good but can be a little frustrating at times. He is like a little human roller coaster. I am surely just along for the ride, as are we all, while God lays the tracks. Tonight he was in the 70's low 80's which is VERY good but doesn't help explain why all the drastic sudden changes. They stopped the VEC tonight and so far he is still doing super well. Oxygen is down to 60%, nitric at 20%. He is currently not breathing over the ventilator. His feeds are now at 23....almost where we were when we first came in. They did start the antibiotics again just in case because the fevers are off and on. The cultures are still not growing anything. So I much to be grateful for.
Trevor, Theresa and my parents made it home safely tonight. It was a very hard goodbye for me. Not that I mind being "alone" here but I just hate to say goodbye....I don't even like them for vacations! :) You are never really alone here which is a blessing. Angie and Natalie are here now so I feel like I can go pester her whenever I get lonely and just need to chat. :) I know that she is already starting to feel the boredom, so I think we can certainly get together for a little "shop talk". I must add that little Miss Natalie is an absolute doll!! She is one very happy baby. Please keep her and her family in your prayers as they are having to adjust to being apart again also.
I have much in my life to be thankful for and I am. I know that each of you do also. Please take a minute for me and find something that you are thankful for and thank God for that special gift. I think we can all get lost in the "prayer request" list and forget to tell Him thank you for all that He allows us to have and experience.
This weekend our family was given some pretty devastating news. I am not sure that we have all even began to process it but it is fact and we just need to take a step back and approach this as positively as we can. Our immediate family has all been notified so I now feel that I can share with all of you and ask for your prayers.
As many of you know my dad was a long time employee of Stimpson lumber. They recently closed up shop here in Montana and he was in search of his next big adventure in life. He was planning to go to school for truck driving and him and my mom were getting ready to start writing a new chapter in their book. Well as we know, sometimes the Lord has different plans for us. He told my dad that truck driving was not what he was going to be doing with the rest of his life. Now both my dad and I agreed that God could have been a little more subtle in his telling him, but it is what it is. (And we laughed and said we hope that God lets him know the right choice in his life with as much gusto as He was telling him he made the wrong one.) In his venture to get ready for school he needed to go to the eye doctor to get his vision corrected because he had been having some issues with his eye. (I think his left?) We found out that he has a malignant cancerous tumor in his eye. The reality is that they are planning to remove his eye July first. It appears that because of the pressure on the optical nerve he is not a candidate for chemo. He will be going to appointments tomorrow to run tests on his blood and do some scans to see if there is cancer anywhere else and to see if it spread from his eye to anywhere else or vice versa. I am asking (and will even resort to begging if need be :)) for you to please pray for my dad and his health. Please pray that this cancer is just in his eye. Please pray that they can go in and remove his eye and that he will be healthy and cancer free. Please pray that he can stay in as good of spirits as he is in now as he deals with this life change. Please pray for my mother who is standing right along side him in his fear, pain and wonder. And please thank God for allowing my dad to be in such a place in his life and his faith that he can approach this in such a dignified and positive manner. Many of you know that I am extremely close with my parents (as is my brother) and the emotional pain that we are experiencing, well, I don't know how to explain it but please pray for us as we try to process all of this. I am particularly struggling because I cannot be there for them as they are facing this obstacle and with everything else that is going on I am just feeling very emotionally heavy. I am a firm believer of handing over what I can't deal with to God. And I do this all the time. But even as I hand this over to Him and accept that there is nothing that I can do, the pain is raw and burdening. I know that all of us are feeling the pain. So please keep my entire family in your prayers and ask that we can find comfort in the Lord as we muddle through one more devistating issue in our family.
Blessings to you and your family. Be sure to tell them that you love them.
Leah

(Dad and mom~hope you don't mind me sharing the news. I thought we could all use a little extra prayers the next couple weeks! :) Much love, Your oldest baby)

Saturday

Just a quick update to let you all know what is happening. Josh remains stable. Not too many changes. They tried to wean him down on the nitric and the oxygen. He didn't take to it too well. He is now paralyzed with VEC again. He was dipping down to the 50's and that is just not ok. He did get to have some tummy time and he seemed to really enjoy that, then he desatted and ended that fun. So...he is now all doped up again....darn it.

They will talk about him again at conference on Monday and see what they can come up with. Dr Baden didn't have a lot of answers today. He commented that we want his pulmonary arteries to grow....but as he grows he is also outgrowing his shunt. So this is a catch 22. We will see what happens on Monday.

Trevor and Theresa will be heading home with mom and dad tomorrow. It was great having them here and I am SOOOO thankful that Theresa was able to come and allow Chubs to be here with me. He really enjoyed himself and said he felt very safe when she watched him. I think that is a great compliment. :) I think that they will now share a bond. If nothing, it was good for the laughs, he really had some good "Trevorisms" while we were all here.

I will post more soon. Please pray for safe travel for our family as they all head back to Missoula and that Joshua can get his sats up so that we will have time to figure out his next course of action. Emotions are running high right now for all of us. Please pray that we can all find comfort and peace and that we can turn over the hard stuff to the Lord. Sometimes we just need to lighten the load.

Love and Blessings,

Leah

Thursday Morning

Joshua had a wonderful night. But as we know things change fast here in the ICU. His lung collapsed at 6:30 this morning. They have been doing chest pt every couple of hours and he is responding very well. They have suctioned a ton of yuck out. They just took an X-ray and we should know very soon if it is opening back up.
Here is the outcome of the morning rounds:
* Talk to the surgeons as everyone feels the need for a "plan"
*Remove the chest (drain) tube because it is clogged
*Stop the antibiotic that he gets because he has (had) a chest tube
*Stop the Viagra because he is still getting the Nitric Oxide
*Restart his feeds. It is at 1 cc an hour just to keep his guts moving. Nothing filling.
*Reassess at 4 pm.
So, that is the "plan" for the day. I will keep you all posted as we find out more.
X-ray results are in and ............. and the lung is very clear YEAH!! (This morning the whole left lung was white in the x-ray)
Leah

Wednesday Update

Just a quick note to let you know that Joshua is doing much better than he was earlier!! YIPPEE :)
I just called his nurse Beth and she said he is doing much better than they anticipated. His O2 sats are in the mid 70's and he is back down to 80% oxygen. He is off of the EPI AND the Dopamine. That can change, if he needs it they will turn it on but looks good now. His heart rate is also much better. It was working pretty hard today. He is on a Vec (paralytic) drip so he won't wake up and move around tonight. Hopefully he has a nice restful sleep and will feel better tomorrow.
So all very good news!!
Leah

Update

Well just as I posted the last post Dr Johnston came in. :) Everything went well. He placed 2 stints in the shunt. The narrowing at the ventricle was pretty substantial and he was able to almost double the size. There was also a little narrowing at the top where there was a little curve so he put a stint there too. The sats didn't increase immediately, which they were hoping to see so they will watch it over the next couple days. If his stats don't go up as a result of the stints then they will have to decide to either go ahead with the glenn or place another shunt.
They were also looking at his pulmonary arteries. His left pulmonary artery is small. Dr Johnston ballooned that but says that it will require more attention later. Dr Cohen will have to decide the plan of action. Most likely Dr Johnston will place a large stint there when he has his glenn procedure. It requires a larger stint than what can safely be done in the cath lab.
So now we sit, pray and wait.
Leah

Wednesday

Joshua is currently in the cath lab. Dr Johnston came and talked to me right before he went in. There is a risk that the stint could go into his ventricle during this procedure. If that happens he will require an immediate open heart surgery to remove the stint. Please pray that this all goes smoothly and without complication.
Joshua is very sick today. We don't know why the major change. He was doing really well the last couple days and now is again running fevers and requires 100% oxygen. It has been at 80% over the last couple days. Even at 100% he is desatting. He desatted several times this morning. *sigh* Hopefully this stint will help get the blood flowing and help him feel better.
I will update again when he gets out.
Leah

Monday (After a busy weekend!)

Boy Oh Boy.....I don't know if it could have been a more beautiful day in Seattle! It was so sunny and warm well into the evening. I think summer may have actually arrived, although, I am not holding my breath!! :) Much like Montana, you just never know what you are going to get.

Trevor is having fun here at the house. He has been busy busy. BIG HUGE thank you to Theresa for chasing him around and keeping him occupied while I try and divvy up the time between the boys and work. Trevor and I went swimming tonight right before dinner. What a little fish I have! He can swim like nobodies business. He put on a pair of flippers and goggles and was all over the pool. He did somersaults (both frontward and backward) in the water and we chased water rockets all over the deep end of the pool. It was great. What a big boy he is turning into. He has also taken an interest in the piano (MOM) while we were here. :) Theresa is teaching him chopsticks. He has just about got it.

Joshua is still about the same. He is awake more, MUCH more during the day now. This is adding a little more stress for me as now he knows what is going on and I don't like him to be alone. He likes to flirt with the nurses and has taken a particular interest in one the RT's. He doesn't take his eyes of her for a minute while she is in the room. It is the funniest thing. I told James I bet he picks a girl later in life that looks just like her! She is a neat gal, most of the workers here are. Some are a little more challenging, like the one today that "didn't feel comfortable" with me wiping the boogies off Joshua's mouth! My first thought was that they shouldn't have been there in the first place ~GROSS....and well I had another thought....but it wasn't very nice and I will keep it to myself! There are things that I think I can handle and things that I know I can but better leave it to the nurses. I think boogy wiping falls in the 'ok for a mom to handle' category, but maybe it is just me.

I had a discussion with Dr Mazor today regarding the "plan" for Joshua. I am using the word "plan" very loosely. Basically, we don't have a plan and aren't likely to have a solid one. Joshua seems to have some challenges that we need to work through. Tomorrow (or the next day, maybe) he will go back into the cath lab with Dr Johnston. Dr Johnston is going to look in his heart and see if there is some thing that can be done to help the narrowing of his shunt. The narrowing is at the very base where the shunt is sewn to the ventricle. The "plan" is to see if he can possibly balloon the shunt site so that more blood can pass through. The assumption is that a stint will probably have to be placed. There is issues with this because the stint will have to be half in and half out of the ventricle and shunt. This will be a temporary fix to see if we can maximize his blood flow. (I keep saying we, but really I have nothing to do with it.....I just sign the paperwork :)) The other possible option is another open heart surgery to place a second shunt so that we (there it is again...) can get more blood flow to his lungs. Both of these would be temporary "fixes" basically to buy time. Here is the worry. They don't know whether it is a cardiac issue or a pulmonary issue. Dr Cohen is not comfortable going forward with the Glenn unless he knows for sure that it is not a pulmonary issue. (Now there are situations that would force him to go ahead with it even though it could be very risky. We are just going to pray that we don't have to go there, but if we do I will explain as we get to there.) If it turns out to be a pulmonary issue then doing the glenn would be a bad idea. Here is the best way that I can think to explain it; The glenn is creating a passive blood flow from the upper body directly to the lungs. The blood is not pumped through the lungs by the heart like it would be normally. So, if there is any pulmonary hypertension the blood would not flow to the lungs and could cause issues in his upper body (and possibly his brain.) So, it would be like a foam ball that is already full of water, if you put it under the faucet it is not going to allow more water in. I hope that makes sense. This can make the surgery at this point very risky and he could have a very rocky recovery. So it is very important to make sure that he is healthy and his lungs have healed. It sounds like if they can do something to help the flow then they will put off the glenn procedure for a couple months. Ah....I think that is it in a nutshell. I will fill you all in as I hear more.

I better get to bed as I have a very early morning.

Love and blessings,

Leah

Thursday

Today has been a very long day.I am feeling exhausted both mentally and physically. I know that I will be in Seattle for quite a bit longer than originally thought and it is TOO soon to start feeling this way. Please pray that I get out of this "funk" soon. *sigh*
I am looking forward to tomorrow as Shyla and Trevor will be here! :) My dad and I have had a great (fast) week. I can't believe that it is already over. We moved over the the larger RMcD House today. Nice blessing that we were able to get over here before the weekend. I do like the people interaction over here, so many more kids. :)
Joshua~what an awesome boy! Because of conference calls, work and then the move I didn't get over there until just before supper. We were pleasantly surprised to go and he was bright eyed and very happy to see me. He had happy legs kicking all over the place and some real good smiles too! So refreshing to see him a little perkier. Of course, it is not good for him to get real excited, so we enjoyed him for about 20 minutes and then had to dope him up again. He was switched from morphine to delaudid today because he is building up a tolerance to the morphine and his doses were getting a little large. The change seemed to help as he drifted right off to sleep. Tonight when I went up there you could see that he was comfortable but not so out of it that he could still suck and rub his silky blanket with his fingers.
Dr Baden came in and talked to me this evening. He said that the surgeons just want to make sure that his lungs are optimal before they do the surgery. He thinks that it will happen some time next week. Very good news as that gets us one step closer to home! He also said that because they want him off the nitrogen oxide he is going to start him on a new drug that does the same thing. He said "I am sure that you have heard of it. It is a common drug called Viagra." And with a smile he quickly followed with, "and I can assure you it will only have an effect on his lungs." His face was absolutely priceless when I, without skipping a beat, said "so no 6 hour erections for the little fella, huh?" :) AHHH the humor of the ICU. (Later at supper my dad was thinking about my response to the doctor and busted up laughing. For those of you who know my dad, it was one of those red faced good hearty laughs! Awesome.)
Well I suppose, off to bed for me. I hope you all have a super day.
Leah

Tuesday

Today was a good day. Joshua continues to get better and better!~:) It is so nice to see him open his eyes every now and then and acknowledge that I am there. He had a couple BIG smiles for me yesterday. It was VERY nice and comforting for me to see. The fellow today told me that they will talk to the surgeons tomorrow and see if they can't pin down a date for the glenn surgery. They feel (from the ICU standpoint) that his lungs are healthy enough to go onto the bypass machine. He said that the surgeons could say this week, next week, next month..... really it is up to them. It appears that he has certainly outgrown his sano shunt and the procedure should happen soon.

The liquid that they pulled out of his chest appears to be chyle and not puss. They pulled out 70 cc's but it seems to have stopped. It is all rather puzzling to them right now and they don't have answers for me. It is basically a trial and error kind of thing. I will keep you posted as I find out more.

He is going to radiology tomorrow to have a picc line placed. I think that will probably be all that happens. He looks so much better then he did and I will get you all a new picture. This is a couple days old but he is still sporting all the same accessories. :)

On the home front: Mom made it home safely. Wednesday Trevor will "graduate" from kindergarten. (I am blessed to have a very special friend who will be going to the graduation and recording it for me! THANK YOU JACKIE!! :) )

I hope you all have a super day!

Blessings,

Leah

Sunday

Latest News:
They moved the tube last night. It was pretty gross as the fluid that they drained was puss. YUCK! They got about about 50 cc's. It now seems to be draining clear.
It was determined that it was pneumonia. Any infections of the lung is classified as pneumonia, so there we have it. There hasn't been any other major changes. He is running a slight fever right now. His sats are in the mid 70's which is great for him being sick. He has some swelling in his face but seems to be resting comfortably.They are going to take the central line out of neck and try and place a picc line in his lower body somewhere. This will probably take place tomorrow as I am confident that it will have to be placed in the radiology lab. They tried to put in a line last week and couldn't....that is why the cath was in his left neck. So we will see what happens. We don't want any central lines in the upperbody before the glenn procedure because of risks that are associated with clotting.
I will update more and post a picture for you all to see later.
Blessings,
Leah

Saturday (Night)

The Lord is good!! (Like we didn't already know that. :) ) The bacteria has already been identified! It is H-Flu. Now don't ask me what that means or what it is...it is a version of the yuck. They have him on an antibiotic and seem to think it should just clear right up and then we can go forward with the glenn. We are wearing masks for the next 24 hours but that isn't so bad.
They are moving the chest tube because it wasn't quite in the right spot. Hopefully this time it will drain.
Leah

Saturday

Hello family and friends,
I just wanted to send out an update on our little Joshua. He is still on the ventilator, morphine, sedatives and paralyzers. Probably will remain on them for awhile. They inserted a small drain tube today hoping to get some of the fluid off his lungs. He also received more blood in hopes that it will help his oxygen saturation. His sats are still really low. They did a swab and blood sample today and sent it to the lab. The swab came back in less than 2 hours (which is very fast) positive for bacteria. They are thinking maybe pneumonia. Please pray that they are able to narrow down the best medicine to clear up this infection and that Joshua's body (and heart) will remain strong enough to kick the infection. I think that the infections scare me more than the bad heart! On a positive note, the echo from yesterday showed that his heart function is improving. The dr tonight said that he is probably ready to have his glenn procedure, just a matter of when. They will not put him on the heart-lung bypass machine until his lungs are healthy. Oh how closely out hearts and lungs work together. :)
James made it home safely and the kids were happy to see him. My mom and dad also made it here. My mom will travel back to Missoula on Tuesday and my dad will stay here until next weekend. As long as the other kids are healthy, my mom will bring them all up here to see me next weekend when she picks up my dad. (Please pray for their health also, I would really like to spend some time with them. Helps curb the home sickness! :) ) The house that I am in has very few kids, and you all know how much I prefer the noise and chaos!! If all goes as planned my Aunt Theresa (my moms sister) will come up also and spend the week with me after my dad goes home.
Please continue to pray for Yvette. (That is the little girl next to Joshua.) She was rushed into another emergency surgery yesterday. Please lift her parents up in prayer as they are having a very hard time and are very sad. May the good Lord comfort them in this emotional time.
Hope you all have a very Blessed day!
Leah

Thursday

I am a little late getting to yesterdays post. Not much has changed. Yesterday was a pretty rough day sat wise. He was bouncing all around and experienced some more arrhythmia's. He was very heavily sedated yesterday.
They stopped the sedation at 8:30 am this morning and he has not required it all day. He is back to 2 hour chest therapy. It was every 4 hours yesterday. Yesterdays ex ray showed no improvement. They will do another one today at 4.
James is flying out this evening and joining the other kids who are at home. This is a good thing....yesterday Trevor wrecked on his bike and loosened a couple teeth. Luckily, baby teeth. He said the curb jumped out in front of him. He was very upset that he couldn't call us for a few hours after it happened. I know he will like having his daddy home.
My mom and dad are somewhere between Missoula and Seattle.
Please pray for safe journeys all around and that Joshua will get the rest he needs for his little body to heal up. We know the Lord is good and in control.
Much love,
Leah and James

Wednesday (Supper time)

Joshua is continuing to improve today. Compared to the last couple days I think we should classify it as "leaps and bounds" better. His chest tube was removed this morning. They have been doing "pounding" therapy every 2 hours to open up his left lung. It is rather amusing to watch. I know it doesn't hurt him but they actually whack him with a little contraption of a preemie oxygen mask taped to a throat stick. It sounds pretty bad because the air gets in the center of the mask but I know it doesn't hurt. And it works REALLY good. :) All his #'s are much better and his chest xray is clearing up. The virus swab still hasn't produced anything and now we are on contact restriction as opposed to viral precautions so we got to loose the masks. We are still in gowns and gloves and judging by Dr Jeffries joking comment....we will be in them for a while.

Several people have asked about the child (now I know a girl) that is next door to Joshua. She seems to be doing much better. Less people in there tending to her, which is always a good sign. She had surgery today and both parents seem to have had a little weight lifted off them.

My mom called me today and it sounds like her and my dad will be coming up Friday when James flies home. My mom will stay until Tuesday and then come back and get my dad the following weekend. It will be helpful having someone else here with me. I may even be able to get Trevor up here for a couple days. :)

Dr Jeffries said that it will probably be a couple weeks before Joshua will be healthy enough to go on the bypass machine and have the glenn surgery. I don't know if all that time will be in the ICU or not. It depends on the medications that he is on. My preference would be the ICU over the floor. The care and people up there are awesome and I know they are ready for any bumps in the road. You never want your child to be sick enough to have to be in the ICU but if they are sick...then you want them there!

I will update when we get back from the hospital tonight. We just went to RMcD House A for dinner. It was very good and now we are heading back.

Leah

Wednesday Update (lunch time)

Joshua remains about the same. They have determined that a higher blood pressure amounts to a happier baby. They have put him on some medication to boost that BP and his body has responded much better. He is still on the ventilator. The doctors have not done rounds yet today. They are running behind. As long as we are not the emergency case then I am ok. :) I have learned that you do not want to be the hottest fire around here. I am totally ok with waiting.
I went up and spent some time with him just a while ago. He opened up his eyes and looked at me. He tried to muster up a little smile but was rather curious as to what the nurse behind him was doing. He has the nicest nurse ever. She really likes him and is very doting. That makes it nice.... :) He also opened his eyes for James when he got there this morning. It is so nice to see him somewhat alert.
I will let you know what I find out after rounds.
Leah

Tuesday Update

Joshua is still about the same as yesterday. He is still on the vent and they are still working to find the correct combination of things to ease the work of his heart. Putting in the stint allowed more blood to flow thru his aortic arch and now he is having pulmonary hypertension. (more blood going out to his body and less into his lungs) Because of this compromised pulmonary flow he has experienced some minor collapse of his lungs. They do a little "pounding" therapy with an external vibrator to help open up his lungs and loosen up the goop so it can be sucked out. He actually likes this sensation. His blood gases are getting a little better. They also started him on some NO2 (Nitrogen dioxide) to help open up his lungs. Right now it is all a fine balancing act to figure out what he needs. He is back on viral precautions (gown, gloves and masks) even though he hasn't grown any of the well known viruses. He certainly has something. This same something has also hit the home front. All of the kids and grandparents staying with them are sick. :-(
Joshua is really congested and we are hoping that it will clear up real soon. He has had to be sedated, quite heavily today. He has been thrashing around and had to be constrained. I think that upset him more. I asked a few times how much they had given him because he was certainly not acting like he had been given anything. They are probably going to have to put him on a drip tonight because he is acting like a little toughie. He wants to be awake and moving all about.
So in a nutshell not too many major changes. We hope to see some improvements tomorrow so that we know he is going in the right direction. (towards healthy, happy and home)
I am still fighting with that stupid video. I think I am going to have to load it into youtube and link to it. I have never done that before, but will work on it again tomorrow. I am going to take advantage of the down time and get a little sleep.
Goodnight,
Leah

First one down

Joshua came out of surgery about 7:20 pm last night. It all went really well. He lost some blood and had to have another transfusion but all in all that is very minor and also expected. The stints are in place and he seems to be handling everything very well....I am sure the morphine has something to do with that! He is just laying there happily sucking on the tube in his mouth. There has been some conflicting info on how long they will continue to moniter his heart function before they decide to do the glenn procedure. I have heard anywhere from 3 days to 3 weeks. I will keep you posted through the process.

When I went in and prayed with him after his surgery he wriggled around and again when I said goodnight so I know that he can hear me. I will be working more and more over this week so James will be sitting up there with him a lot during the day. As that is good for them, it is a little hard on me that I can't be there the whole time. Please pray that I can stay focused to get my work done so that I can get right back up there to my baby. :) Thank you all for checking in and seeing how he is. It is very comforting to know that you are all there supporting and praying for us.

May you have a blessed day.

Leah and James

He is now in surgery

UPDATE: We got a call at 5pm (PST) that they were just starting the procedure....that was an hour and forty minutes after they took him back. My guess is that they had problems getting his arterial line in.

Well they have wheeled my little peanut into surgery. He is not having the bi-directional glenn. They have decided that they are going to have Dr Cohen open up his chest so that Dr Johnston can go in and place a stint in his aortic arch. This will hopefully open up the aorta and allow better blood flow and that will in turn allow his heart to work less heard and increase his heart function. He will be evaluated for a time after this surgery to see if there is an increase in function before they go ahead with the glenn. If he happens to get too much blood thru the aorta during this procedure, then they will have to do the glenn so that he is not super blue from lack of blood flow to his lungs. Such a fine balance. I will let you all know when he is out. Please pray for his safety and for the knowledge and decisions that will be made by the medical staff.

*sigh* Now to sit and wait.......

Leah and James

Long Day....but Good

Today was a rather long day but it was a good one. Joshua is doing very good. He was quite the mommy's the boy today, but that is what I asked for right?! He is at an age where he knows that this is not the place that he belongs. It is not familiar and he is not surrounded by the usual family. I try to sneak out when he is sleeping but he is quick to notice that I am gone and gives the nurses a hard time. So needless to say I spent most of the day just holding him and playing. Here is a little video that I recorded while we were playing. I was holding the camera myself so it is a little jumpy but I thought you would all like to see that he is doing well despite being in the hospital. We had fun just being us.... :)

Even though Joshua and I had a good day it was very hard emotionally. The small child next door to us had a really rough day. (to put it mildly) There was quite the scare and they spent several hours trying to save the child's life. The mother was a spanish speaking gal that was sitting in front of our room while they were we doing life saving measures in the next room on her small child. It was absolutely heart wrenching and there was nothing that I could do or say to comfort her . It was very difficult for me. I sat there and prayed for her and her child but I still felt kind of defeated. They were successful in stabilizing the child but it still seems pretty grim. It is a very harsh reality of life in the CICU. :-(

We find out in the morning what will happen in terms of the surgery and I will post as soon as I find out. I need to wrap this up and get some sleep. ok this always seems to happen to me....I can't get the video to work....I will load tomorrow.

Leah

I will load the video in WEBSHOTS. I will try and hook up a link.