Ending the week (already) update

So hear I am apologizing again for not being more on the ball with the blog lately!

Joshua has had a real mix of good days and bad days lately. Last Saturday he had a GREAT day! Brooke was here and was playing with him. He was laughing, smiling and even sitting up (with her help of course). I knew that she was here that morning so I chose to sleep in and missed a lot of the fun but she filled me in on the details. :-) What was super great was that the doctor's got to see him be happy and smiley.

We don't know what caused what but we do know that over the course of a day or so he had bad diarrhea and was SO irritable! He ended up a little dehydrated with elevated sodium...again. He was awake whimpering and waving his hands around for most of about 32 hours. :-( No amount of drugs seemed to help and was SO SO SO unhappy. (For the record: over the course of the days previous he had his Ativan changed from IV to PO, a fever of 104 and was also getting some more teeth!) Then he finally fell asleep and slept for a few days straight. Mean while we had to hold his diuretics because it is dangerous to bring the sodium levels down too fast. He retained a ton of fluid and required some additional help. Yesterday we had to put him back on the ventilator. He immediately started to look a little better and his heart rate has been very good in the low 100's - 120. When they went to intubate him Johnna looked quite 'puzzled' as she was obviously working something out in her head. She mumbled 'no' after asking for suction and then asked for a Kleenex. Then she just shook her head again and reached into the back of his throat. She pulled out a large marble sized ball of mucous! EEEWWWW!!! No wonder he was having some issues breathing and had a little lower sats. It also helps explain the weird croaky cry he had developed. And did I say EEEWWW. Becky proceeded later in the day to get another large gob out, even though it wasn't as impressive as Johnna's!

He also had to have 2 bi-lateral chest tubes placed (again) to remove the fluid that developed in his pleural space. IR came into the room and did them again under ultrasound.

On Tuesday IR was also in here and they drained 15 cc's of blood from his hematoma. It is smaller now and even softer. It doesn't appear to be infected but does have a large clot it in.

He had an echo on Monday and his heart function appears to be the same. The clot was a little lighter in color so maybe it is maturing.

He will be going into the cath lab here in the next hour to have a biopsy done to check for rejection and to have his PA's and SVC checked out. The thought is that maybe they need ballooned or stinted so that he can get optimal blood flow through them. This should improve his heart function.

Oh, we also changed rooms the other day. We are now in 4273-1. His room mate is the cutest little gal EVER! He is sharing a room with Miss Karlee! It has been nice to finally get to know her mom Devon. Although, after a little mix up with the UC desk and her having to sit in the waiting room for 20 minutes....she may not think the same! :-( UGH.

Here are some pics from this last week.

Sporting his bipap mask

This is his hematoma (outlined with a Sharpie!)

And this was taken a little while ago before he fell asleep.

Video

Towards the bottom of the page :)

What a day

First an update on our little neighbor. He had another very rough day. He did go into cardiac arrest and crashed onto ECMO. I have talked breifly with Heather tonight and she told me that they took him back for a CT scan. They are concerned that something may have happened to his brain. Please continue to lift them all up in prayer.

I experienced some guilt today. While Daniel and his family were having such a rough day, Joshua was brightening mine up.

Today I got smiles and a few '150 kisses'! He talked to Grandma Betty on the phone and was pretty playful for the most part today. I am sure that it is because Brooke was his nurse today! I don't know how you could have a bad day with her around. She is awesome.

PRAYER REQUEST

Please keep Daniel and his family in your prayers today. I am not sure the details but I do know that his room has been very busy tonight. His mommy and daddy were here a few minutes ago and are visibly upset. I don't know the details right now but will try and get an update from Heather tomorrow.

**I was just told that they are going to be putting Daniel on ECMO. Please pray that this provides the rest that his body needs to recoup.
***3 am update~ they are NOT putting Daniel on ECMO. He did code but he is now stable. He is, however, rejecting his heart. Heather said that they are going to wipe out his immune system (T CELLS) and that his body could stop rejecting. Please pray for health and wisdom for his parents as they fear making him sick.

Rejection is a natural process for these kiddo's, the hope is that is only minor. In some cases it is more severe. There are 5 kids in the ICU right now that are post transplant (since January 1st) and 3 more that I know of that are on the floor and at home (from Nov and Dec). We all share a common bond and the same fears. Daniel's rejection has had an effect on several of us. Please keep all of these families and babes in your prayers.

Tuesday

Hello. I am just going to start by saying thank you to all of you who just recently posted comments. I got them (Mimi, Lois and Jamie) but I managed to reject them instead of accept them. UGH I am telling you....I am having one of those days.
Joshua! I seem to have not updated that he is OFF THE VENTILATOR! (I think it was Friday.) Dr Baden wanted to see what Joshua could do and let him just breathe on his own with oxygen. He made it one day. He was then placed on bi-pap. He has been doing really well from a respiratory stand point. He now has 3 - 3 hour breaks from the bi-pap and handles them perfectly well.
Sharon, from wound care, was just in and he is now sporting a 'Wound Vac' on his tummy. This should help heal the holes that developed in his abdomen from the tubes and infection.
He still has a large (very large) hematoma on his right side from the attempted chest tube. We are just watching that. I am sure that it is uncomfortable.
They are supposed to do an ECHO today to measure the clot in his left atrium. I will update on that when I hear something. We are just praying that it hangs on to the stitch and slowly disappears!
I have some pictures that I want to post and some other misc updates that I want to make sure that I have documented....mostly for me. I am sure that I won't get to it for a day or two.
I hope that you are all doing well. Thanks for checking in on us.
Leah

Slacker mommy

Ok..I know that I have left you all hanging. I will probably run the updates over the next couple days...I don't know that I have enough energy for a post big enough to say all that I want to. :)

Joshua~He had a rigid bronch done on Friday and I swear that he is a new kid! It is AMAZING what having two working lungs can do for a person. He has lost almost all of the extra fluid that he had gained...as you can see from the photos the other day. He looks so good.
He has been awake more which you would think would make me happy but it doesn't really. He SOBS each time that he sees me. It is breaking my heart. He wants me to pick him up just about as bad as I want to scoop him up and love on him.
His overall health is pretty good. His vent settings are down a little and they have come down a little on the Ativan and Dilaudid also. He has some nasty wounds on his chest where the tubes were. They are packing them and hopefully they will heal sooner rather than later. They are really gross. He has a hemotoma on his right side from the attempts to get the last pigtail drain in. It is also really large and sore. In the scheme of things I see these as rather minor.
The bigger issue that Joshua is facing right now is a blood clot in his heart. It is from the LAV line that came out last week. There was some fibrin from the line when it pulled out but now I believe it has turned to a clot. It has been steadily growing larger the last few days. Dr Law asked for hematology to consult. I think they decided that they are going to start him on an aspirin regimen. I don't have a lot of clarification on that but I will let you know as soon as I do.

I also wanted to let you know that yesterday they performed their 4th heart transplant here this year! Daniel (Heather's son) received his 'angel' heart. Please be in prayer for him and his family. He has had some big struggles this year.
Thanks for checking on us!
Leah

Need I say more....

These were taken today. I will update soon.

Today is a day for celebration!!

I am a mommy who likes to celebrate the small stuff!!
Mr. Joshua has been peeing! LIKE CRAZY! He is averaging about 80 cc's an hour!
The victory that I am celebrating today is the fact that his tongue now fits in his mouth and he can have his binky back!
All of the doctor's felt good about his progress this morning!
The Lord also knew what I needed today. When I woke up this morning and greeted Joshua he opened his eyes and stared at me. He also was making attempts to 'chat' with me. This is the first time in almost a week that he has seen me with his eyes! I needed that reassurance to know that he was ok.
I am so happy! I am feeling good about things today.

Seems to have rounded the block again

Brooke had used the term 'looks like he came around the corner' last week.
He has since come around the block....again.
He isn't having too swell of a day. His heart rate is hanging about 160 up from the 120's and 130's we saw all day yesterday. Pressures are up...temp is creeping up. He is 37.8 right now, but his norms are more like high 35's low 36's. They are taking out the right chest tube that was put in during transplant. His wounds all over his stomach are HORRIBLE! Poor baby. Lactate is up to 4.9 from 1.7. They are going to pull another gas in a while and see if it is better.
Last night his potassium got a little low and he had some irregular heart rhythms. Those corrected as soon as we boosted his potassium. They are going to see if he can handle being off the Vec today. Dr Law said he thinks he looks bad compared to yesterday. I would agree that he does look more swollen and redder. He did pee like crazy for a while last night. We were feeling very optimistic.....
I think that is it in a nutshell...Please continue to pray that he will get better soon. I miss him.

Transplant # 3

Please be in prayer for the families of the 3rd heart transplant here this year.
I don't know who the receiver is, but I would like help in lifting both of these families up in prayer. They are in surgery now......

The oscillator ventilator is gone~

WHOO HOO
So at 1:45 pm they moved him back to the conventional ventilator. He had another bronchoscopy at 8 am this morning. He was bag suctioned for the better part of an hour. Since Joshua was able to maintain his #'s so well he got to go back to the regular ventilator. I didn't realize how loud the other one was until it was turned off!
They are talking about doing a rigid bronchoscopy in the OR maybe in the next couple days depending how things go. The hope (or my hope) is that they can get him off the Vec and maybe he can start to move some of the secretions on his own. I would like to not see him have to go back to the OR if it is avoidable.
There were no other major changes today. We wanted to change as little as possible so we were sure that he was handling everything ok.

Procedure Update

Dr Mazor and Jeremy (the Fellow) were not able to get to the fluid so they called in IR. They came in and placed the drain using ultrasound as a guide. It quickly drained 150 cc's and is still draining. That has to help things along!
RT just came in and bag suctioned Joshua. Hopefully between these two things we will see some improvement. Sounds like they got a lot of junk up with the suctioning!

Procedure

So the ultrasound showed a pretty large pleural effusion on the right side. It is estimated to be about 150 ml's. They are going to put in a pig tail drain on that side. It is going to be a little more risky placing this one the ones in the past because the ventilator that he is on is literally shaking him. By draining the fluid it should help his lungs have more room to expand. I am going to step out of the room and go eat while they are busy working on him. I will update in about an hour or so....please don't panic if I don't get right back to you.

Monday~Monday

Well~ I am really feeling the Monday blah's!
Sorry the lack of updates the last few days. Saturday, Tammy and Glenny came up to see me. They took me to dinner and we browsed around at a couple stores. It was nice to get out of the hospital for a bit. I have not left in 1 week except for to go shower. It was a nice break and probably needed. That morning Dr Law told me I should go back to bed and sleep then go get some sunshine and come back and sleep some more! I am figuring I must have looked pretty rough! Yesterday, I slept in and got some much needed rest. Dr Baden was razzing me this morning about sleeping 'through his shift' (which was until about noon...) but I just replied it was on 'Dr's orders'! :) He said he couldn't agree more, "The best and most expensive babysitter you will ever have...take advantage if it!" Boy is that an understatement.
So a summary of the last couple days....
He was put on the oscillator ventilator Saturday. He was at the highest settings on the regular ventilator that they felt were safe for him. He is heavily sedated and now on a Vec (paralytic) drip. The oscillator ventilator doesn't allow for good suctioing. They had tried a couple times over the weekend and he decompinsated quickly. They decided that was not a risk they wanted to take and quit suctioning him. Today his sats fell pretty quickly and they felt the need to have an emergency back up plan in place in case he decompensated again. The back up plan is VV ECMO. VV ECMO is lung support while VA ECMO is lung and heart. They felt that they needed to bag suction him but incase it went bad they had the surgeons cleared and ready to intervene. I am VERY glad to say that Joshua handled it really well and remain on the oscillator ventilator for now. It was quite a sight to see 5 docs, the nurse and 2 RT's in here for a bag suction! Dr Baden was 'running' the bag and the RT was able to get some of the junk out. There was a light heartedness in the room that was much needed and made me feel at ease. :)
Joshua's gas was a little better and they took another xray. The nurse and I are calling a do-over on the xray because it looked much better on the machine than it did on the computer. We are still waiting for the report. They also just did an ultrasound to see if some of the white on the xray is due to pleural effusion. I will let you know what I find out later.
Tammy is his nurse today and took the liberty of totalling his fluid balance (and I use the term balance lightly)...he is 3 liters positive since he came off ECMO. He is SO SWOLLEN. I will take a picture and post later tonight so you can see what I am talking about.
The plan....as of right NOW...is to hold steady. They will bag suction him again when the surgeons are available and we will look at him again then and see if we can come up with a plan (another term I use very loosely)!
Please pray that we can figure out how to make him better without the use of ECMO again, but that if we do need to resort to ECMO, that he does as well as he did last time.
His heart seems to be doing just fine still.

Notes for mom:
Dopamine up, Milrinone down, No temp for several days (36.2) Toe temp about 34. Lactate down to 1.9.