It has been a very slow week for Mr. Bug. A few fun things have happened, though.

First, they have continued to be very aggressive in decreasing both the ventilator settings and the paralyzing drugs, and over the past day or so Mr. Bug has been taking breaths on his own. The reason this is important, as it was explained to me, is that his lungs can be damaged by the ventilator, and the breathing tube is a major entryway for new infections, and so getting the tube out of him as soon as possible is very very important. He had a little crash on Wednesday, but he recovered from that fairly quickly. We have become quite used to these little setbacks, but as long as the steps backward are fewer and shorter than the steps forward, the PICU doctors don’t appear to be too concerned. His lungs are still improving only VERY SLOWLY, and there is a lot of concern that the fungus will find his lungs to be a wonderful place to begin killing and eating tissue, if it has not already, and once that happens, the battle is lost because the blood, and the drugs, can’t make it to dead tissue.

Second, Mr. Bug’s white blood cell count is within what is considered normal now. This is both good and bad, as when he has enough of these cells, his body can help the drugs fight the infection. This is primary at this point, as if he can’t fight the infection before it eats him up, he’ll be, well, eaten up! However, the downside to the increased white blood cells is the increased possibility that he will go into liver rejection. So far, his liver numbers have been fine. He is not as yellow as he was when he first got sick, so the thought is that while his liver initially became unhappy with this state of affairs, it has now settled down, and is doing fine. This is pretty shocking to everyone, I think. I now understand that it was strongly believed that his liver would fail quite quickly in all of this, not able to withstand the drugs and the fungus, and that would be that. As soon as his liver rejects, all is lost. So it’s a fine balance they are maintaining between his body attacking the fungus and his body attacking his liver.

The continuing difficulty has been his kidneys. They failed about 3.5 weeks ago, and we are very quickly approaching the point where they are unlikely to come back. There has been no sign of function at all. They have even removed his catheter because he was not using it, and again, any plastic in him is a portal for infection, so they will leave it out for now. Mr. Bug did develop a clot where the lines for the dialysis machine took blood out of him and brought blood back, and it got so bad that they had to move the lines. This was done last night, so hopefully today the lines behaved themselves.

It has been extremely difficult to be away from Mr. Bug while I am fighting this cold. Not only can I not hold his hand and talk to him at this time when he is more aware and needs his family around him, we also get very second-hand updates from nurses. A 5-minute phone call is so different from being in the room for hours and catching all the chatter, talking to the doctors, and asking questions as the occur to me! They told me that after a week, if I this cold seems to have gone away, I can be with him again. He literally catches EVERYTHING anyone has, it’s crazy! Every day, it seems, some new bacteria or virus has grown out in the cheery infectious disease doctors’ petri dishes. They talk a lot about gram  positive rods they have stained and weird bacterias they never see in this part of the country and viruses that have zoo animal names There is always a big party in their dishes, and so far nothing new has been dangerous to him, or at least they have been able to find drugs to eliminate them before they become a problem. The cheery infectious disease team is still my favorite team on Mr. Bug’s case!

One thing we can be very grateful for is that Mr. Bug is now at the bottom of the pile when it comes to who is most critical in the PICU. The doctors used to round quite early in the morning, and a few weeks ago they were rounding twice in a day. Now they make rounds on him late in the afternoon, and instead of the giant crowd of doctors crowded around to put in their 2 cents worth, there is often only one doctor with the nurses and the respiratory therapist.

So really, nothing very exciting has happened We will have another meeting with the doctors on Thursday, and hopefully they will have some kind of plan of action they can let us know about. Right now the plan is “wait and see.” I think it’s going to be that way for months!

Just a little bit of fun stuff in all of this.

First of all, Mr. Bug has been sedated and paralyzed for weeks now, but the paralyzing agent has started to wear off. He is still sleeping with the sedation, but now he twitches and tries to pull away from the nurses when they stick things down his nose. But what really killed me today is when I held his hand, he squeezed back! I know it is all reflex or some kind of unconscious reaction, but it was really exciting none the less.

Second, I talked to the ICU doctor and this particular doctor was pretty optimistic. This doesn’t mean anything, because there are other ICU doctors who are not optimistic at all, but talking to a doctor who has a positive outlook with respect to Mr. Bug is very good for the family morale.

Third, Mr. Bug’s liver transplant coordinator (aka our angel) came to visit while I was at the hospital, and we talked a little about Mr. Bug’s liver. His liver looks GREAT! I keep wondering how unusual this is, particularly with a kid who has had a liver transplant, and our angel said, emphatically, “This is VERY unusual. We were certain he would be rejecting by now.” Keep in mind, if his liver rejects, he will certainly die. However, the liver team is elated that their organ, the organ that should be the most at risk through this, is cooperating! So they are all upbeat, and hanging with the liver homies has become a source of happiness in all of this! They hang out in his room we chat for an hour, we talk about life, and we forget how sick Mr. Bug is for just a few minutes.

Finally, Mr. Bug’s white blood cells went from 700 to 1400 in one day. Now, he needs them to be at 4500 to be considered normal, but the fact that they are going up is AWESOME!!!

So let’s take note of what has improved: We needed the lungs to improve, and they are. We needed the white blood cells to improve, and they have. We need those kidneys to improve, and, well, they have not. 2 out of 3 is pretty good, though! He still needs to improve a LOT more, but we are steadily moving in the right direction! Praise the Lord for a little bit of encouragement!!!  🙂 🙂 🙂

My mom brought me a bouquet of sweet peas a few days ago and my house smells like April. It is, of course, the best month of the year. Not only was I born this month, my oldest son was born this month, I was married in this month, my Opa and my Grandpa Taylor were born in this month. This is the month when we get rain showers and the sun is just warm enough to tempt us to go outside and breath deeply. It is the month of diamonds and sweet peas and baby kittens and velvet grass under bare feet. This has been my month since the day I was born. My Opa and Oma used to take me out wherever I wanted to go, and buy me whatever I wanted during this month. When I was 10, my parents gave me a brand new, Victorian style bedroom, complete with antiques and new carpet and wall paper. That was the same year I got a horse for my birthday in April. It is the month where I get what I want, no questions asked. The only month when I can ask for something without being told I am selfish. And always it is the month of sweet peas. It is also the forever the month my youngest son embarked upon what may become the last journey of his life, and for the first time ever, I might not get what I want.

Those doctors are trying their darndest to give me what I want, though!

We (well, I mean the doctors) have officially begun the process of weaning Mr. Bug off his life support. This is not necessarily an indicator that he is getting better. It is more an indicator that we are quickly approaching the point of no return, the 6-week marker, when if he is NOT off life support, he will have a very slim chance of ever getting off of it alive. The first thing they have done is set his ventilator such that if he wants to breathe on his own, he can. After 3 weeks on the ventilator, the lung doctors are edgy about all of this because at this point, keeping him on the ventilator can cause more harm than good. His blood gas ratios have indicated that his lungs would be triggered to breath, if he is no longer on the paralyzing drugs. And so his paralyzing drugs were all but eliminated on Sunday. It takes a few days for his body to eliminate this drug, so they are expecting that if he is going to breathe on his own he will do so sometime this week. The second thing that has been done, as I mentioned before, is that one of his anti fungals has been eliminated. This has been done so that his kidneys can have a few weeks to heal up and get working again before that critical 6-week mark.

His white blood cells are still very very low. 🙁

Mr. Bug has been tolerating all of this quite well. He has the best nurse in the world, Nurse Jan, who can fix anything with him and who can get him to tolerate anything!

This appears to be very critical week with him because I am not sure that they will increase his settings back to the point where he was again even if he crashes. Depending on how much progress the believe he has made, they may simply let him pass away if he cannot survive with the new life support settings. If he has improved, in their eyes, they may increase the settings to help him through this time, if he needs it. I do know that if his heart goes, they there is a court order indicating that he is not to be revived. That order will stand at least until May 1 when we have another meeting with all the doctors.

I know this must seem like the same news every single day. However, he IS continuing to make improvements every day. They are tiny, but he is improving! If he can make it over this hurdle and get off life support, he will be in the stretch where we wait and see if he can improve enough to actually breathe without a ventilator. And if he can get to that point, we wait and see, for another year, if he can actually live life without the fungus re-emerging, and without his lungs crashing, and without his kidneys crashing, and without having a heart attack. We find out over the next year if our little fragile boy can bounce back to what he was, or if he will have even more physical issues to endure throughout his life. Please continue to pray!

Today we all went to see Mr. Bug after church. I took Sunshine in with me while everyone else waited, and she was very happy to see her brother. On the way in she kept asking if we were going to take Mr. Bug home with us today, and I don’t think she really understood that he is still sick until she saw him. Then she said, “Oh, our baby didn’t wake up yet!” She is the only one of the three kid-os who really wants to snuggle up to him. The others want to play and eat the cool snacks we have in his room, but Sunshine wants to hold his hand and talk to him. She told him all about what she had for breakfast and what she did at church. She is downright chatty, and he listens patiently, just like he always has. Although now he has no choice. I’d like to believe he really is hearing her and that it makes his soul happy to hear her chatter at him.

We sometimes feel a little out of the loop on weekends as we try to have a Sabbath from the hospital on Saturdays. When I saw him on Friday, they had decreased the vent settings a little, and he was not happy with it. Today, they put him on a type of vent setting where should he want to breath by himself, he can. With this end in mind, they are also taking him off the paralyzing agent he has been on for the past 2 1/2 weeks, and hoping that within a few days, he’ll be breathing on his own! This is what they call “aggressive treatment.” I don’t know if they believe it will work. However, so far so good. He is very stable, he has not needed blood pressure medication to keep his heart happy, and his oxygen and carbon dioxide levels look really good.

A second possible change is that the cheery infectious disease doctors want to eliminate one of his antifungals to hopefully kick-start his kidneys.  The drugs appear to be the cause of his kidney failure, so stopping the drugs should theoretically allow his kidneys to work again. Theoretically. Depending on whether they are actually damaged, they should come back strong. Like the vent settings, this is considered to be extremely aggressive treatment, a last ditch effort.

However, a third issue is that Mr. Bug’s lungs have become somewhat infested with bacteria through all of this. This is to be expected as wherever plastic enters the body, there is a nice little portal for bugs to get in. The infectious disease doctors are thrilled to keep abreast of his new infections, and to treat them accordingly, but these new little bacteria are NOT helping him at all!

Finally, his white blood cell count continues to decline. Bad news there. He NEEDS those white blood cells to fight this thing! All of these systems are interconnected, and the hope is that if his kidneys work again, they will let his bone marrow know that it needs to pull it’s weight a little and make a few white blood cells!

So Mr. Bug is now entering the realm of “make it or break it.” If he can handle all of this treatment, he’ll be good to go. That’s where the 5% of hope comes in. It is possible for him to work with the doctors and pull through this, and this is the time for him to show his stuff! If he cannot handle this aggressive treatment, there is the problem of putting him back on the life support knowing that while he can be sustained indefinitely, the damage is irreversible, and at some point they will have to make decisions about taking him back off the life support. So they can either call this their last effort and if it does not work, let him die a “natural” death, or they can put him back on life support and hope that somehow he starts to heal sometime in the future. This is a chance the doctors appear unwilling to take as it is one thing to let nature take it’s course, and it is another thing to intervene when there is no healing possible and THEN remove care when a person is not anywhere near clinically dead, or even brain damaged. This is an enormous ethical dilemma, one for the text books, or at least for my ethics class next semester!

I predict that this is going to be a very interesting week! If nothing else, this is a very critical time in his care. With this in mind, please, please, please don’t stop praying for him! The major issues continue to the same: Lungs, kidneys, white blood cells!!! Pass Mr. Bug’s story on to anyone you know. We need to world to know that their prayers are desperately needed for this little one’s complete healing soon!

Thank you all who have been praying for Mr. Bug. He is such a special little one and has brought so much joy to everyone who has cared for him in his life. Thank you also those of you who have offered and given help during this time. You can’t imagine how much all you have done has helped us.

The doctors are looking a little grim these days. It seems that the improvements of last week were pretty much erased by Mr. Bug’s failures over the past few days. Today he is a little better than yesterday, and they are trying to help him tolerate lower ventilator settings again, but his blood pressure and heart rate are not really cooperating as much as they have in past days. This is the thing. From everything we’ve read and heard, this is not something that is quickly cured. If a person does survive this disease, it is some steps forward, some steps back, and one hopes that the sum of the steps is overall forward. We are still ahead of what we were 2 weeks ago, but very, very far from where we need to be for him to be out of the woods. Depending on who we talk to or what we read, he has a 5-15% chance of surviving this, but we won’t know whether he fits into the 15% or the 85% for some time. If his lungs and body begin to heal, he’ll eventually come home and we’ll throw the biggest party imaginable. If he does not begin to heal, the fungus will begin to eat him, body part by part, until he can’t sustain himself even with help, and he will have a heart attack, or he will suffocate, or his blood will become extremely toxic, or his brain will begin the bleed, or his liver will go into rejection, or any number of other possibilities will occur in any combination, and he will die.

Until we know what path he will follow, all of the doctors are working frantically to heal him. A LOT of things need to happen toward that end. His bone marrow and kidneys need to wake up so he can keep producing blood and all the kinds of cells he needs to fight the fungus. His kidneys need to start filtering his blood again so he can pee on his own. His lungs need to show marked improvement and begin working on their own. His heart needs to consistently be able to maintain it’s rate of beating, and his vessels need to cooperate with his heart in two ways: they need to stop leaking, and they need to maintain the right elasticity and tension so that his blood pressure will stay where it is supposed to be without the use of drugs.

There are also so parts of him that need to stay healthy. Mr. Bug’s liver is pretty happy right now, and it needs to stay that way. His heart is pretty happy right now, and it needs to stay that way. His gut is working nicely, and it needs to stay that way. His brain is still nice and healthy, and it needs to stay that way. His lungs are still accepting oxygen, and they need to keep doing so.

It appears that this is the one of the most challenging cases these doctors have dealt with in a while. He is a kid with short gut, a liver transplant, lung scarring from previous intervention, he is just coming out of liver rejection so he is extremely immune suppressed, he is little, and he has already endured so much that his body is already compromised in general. Because of this, these doctors take him very seriously. To them, it is a bummer that he is dying, but it is pretty exciting to deal with such a complex puzzle. They get to present his case at big, fancy meetings all over the place, they have an excuse to call their smart, fancy doctor friends all over the world, and if he lives, they will have some major bragging rights. Mr. Bug is a bump out of medical boredom, and he is fortunate to be the one who keeps their attention the longest! This is just not something doctors see all the time. We are very fortunate that Mr. Bug can benefit from their adventures in medicine!  🙂

Please pray!!!

1. Lungs – We need some MAJOR healing TODAY – TOMORROW – EVERY DAY from here on out!

2. Kidneys – They HAVE to start producing pee SOON or he will lose them!

3. His bone marrow has to wake up and start producing all of the right kinds of cells so he can fight this battle more efficiently!

4. It’s a crazy thing to pray for, but I’m praying that this is the dumbest fungus on the planet, and that it just sits there, not knowing it is supposed to start eating him up, so those drugs can continue to work their magic.

Please continue to pray with us! Everything is against him right now except for the prayers of the saints!

Well, I guess we can’t have all sunshiney days, can we? Mr. Bug took a pretty big step backward today and ended up at the end of today with more intervention than he was on even a week ago. This is NOT good news! The only ray of light is that he was already so much improved that he actually had some space to step backward and not die. We don’t know why this happened, it just does sometimes. We knew this process would be steps forward and steps backward, but we hoped the steps backward would be smaller than the steps forward, not bigger! It is hard, but we have to take deep breaths and realize that after a week of steady improvement, one bad day is not the end of the line for him. It is just one day. Tomorrow is a brand new day, and if he is still fighting tomorrow, that is a victory all in itself! It sure would be nice to have one day where everything was right in all aspects of life, though. Tomorrow we will have another big meeting with all the doctors, and we will have a better big picture of what is going on. We have a LOT of questions to ask, and we have not been able to be at the hospital very much during the day, since I’ve gone back to work and BSF, so we feel a little disconnected at the moment.

It has been so easy to feel depressed and sad about all of this, and hard to understand why this little one who has had so much hardship and is still on innocent would be handed this fate when he has just begun a new, normal life! Why is God picking on a baby?

I can almost hear God shouting from the whirlwind,

Who is this that darkens counsel
By words without knowledge?
Now gird up your loins like a man,
And I will ask you, and you instruct Me!
Where were you when I laid the foundation of the earth?
Tell Me, if you have understanding,
Who set its measurements? Since you know.
Or who stretched the line on it?
On what were its bases sunk?
Or who laid its cornerstone,
When the morning stars sang together
And all the sons of God shouted for joy?

Or who enclosed the sea with doors
When, bursting forth, it went out from the womb;
When I made a cloud its garment
And thick darkness its swaddling band,
And I placed boundaries on it
And set a bolt and doors,
And I said, ‘Thus far you shall come, but no farther;
And here shall your proud waves stop’?

Have you ever in your life commanded the morning,
And caused the dawn to know its place,
That it might take hold of the ends of the earth,
And the wicked be shaken out of it?
It is changed like clay under the seal;
And they stand forth like a garment.
From the wicked their light is withheld,
And the uplifted arm is broken.

Have you entered into the springs of the sea
Or walked in the recesses of the deep?
Have the gates of death been revealed to you,
Or have you seen the gates of deep darkness?
Have you understood the expanse of the earth?
Tell Me, if you know all this…

Now gird up your loins like a man;
I will ask you, and you instruct Me.
Will you really annul My judgment?
Will you condemn Me that you may be justified?
Or do you have an arm like God,
And can you thunder with a voice like His?

Adorn yourself with eminence and dignity,
And clothe yourself with honor and majesty.
Pour out the overflowings of your anger,
And look on everyone who is proud, and make him low.
Look on everyone who is proud, and humble him,
And tread down the wicked where they stand.
Hide them in the dust together;
Bind them in the hidden place.
Then I will also confess to you,
That your own right hand can save you…

Please pray for us that we respond correctly:

I know that You can do all things,
And that no purpose of Yours can be thwarted.
‘Who is this that hides counsel without knowledge?’
Therefore I have declared that which I did not understand,
Things too wonderful for me, which I did not know.”
‘Hear, now, and I will speak;
I will ask You, and You instruct me.’
“I have heard of You by the hearing of the ear;
But now my eye sees You;
Therefore I retract,
And I repent in dust and ashes.

Today is the first day of week 3 for this hospital stay. Two weeks ago today, I became overly concerned about Matthew’s breathing, decided it was NOT a side effect of the iron infusion, and headed down to Children’s with all my babies. We thought it would be a pretty straightforward visit. One week ago today we were anticipating a meeting during which we were going to discuss the court order for his DNR (Do not resuscitate), the course his illness would take prior to his death, and our rights with respect to burying our boy since his adoption has not yet finalized.  Today we are elated that weaning from the ventilator is becoming a reality, and we are no longer waiting with Mr. Bug on death’s doorstep. We are well aware that he is still so sick that his chances of dying are greater than his chances of surviving this. However, if progress like he is making continues, we will be looking into rehabilitation and talking about bringing him home sometime in the months to come! I’ll take that over visiting a grave with flowers any day!

Weaning from the pressure ventilator (that’s the correct name!) continues! Yesterday the machine was set at 11, today they decreased it to 9, and they plan to decrease it even more tonight, depending on how he tolerates it. Paired with his x-rays from today, which showed slight improvement in his lungs, it appears that his lungs are actually beginning to heal! He is off his blood pressure medication for the most part, so his heart is so far working perfectly. Also, we have gone an entire week now without any backslide! It took a while for his lungs to start to show any sign of improvement, and progress is so painfully slow, but it is so encouraging that they are moving in the right direction! His kidneys have continued to be in failure mode with no sign of improvement. I think they will be the last organ to come back as the drugs are helping the lungs but hindering the kidneys. It may be a few more weeks before we have any real progress there. It is fortunate that medical equipment is such that a dialysis machine can perform the job his kidneys cannot!

Tonight I took Auntie Chelsea and Judah down to visit Mr. Bug. Judah has been asking to see him, and he is pretty frustrated that his brother is not home to use his crib and sword fight with him. He was very happy to spend time with our FAVORITE nurse, eat the yummy snacks we have at the hospital, learn all about the dialysis machine, and discover that if he becomes a nurse he can not only run such a machine, but he can ride in the helicopter while running the dialysis machine. Oh, a dream come true! The only thing better might be if the helicopter were equipped with Nerf artillery and water balloon bomb capabilities. Kiara and Judah both colored some pictures for Mr. Bug to hang in his room so he will have something wonderful and beautiful to look at when he wakes up. This is very important, explained Kiara, so that he is not scared when he looks around. Sweet children. The subject of their soothing art? Darth Vader…ROAWWRRRRR!!!

DON’T STOP PRAYING!!!!!!!!!!

Not much new info on Mr. Bug. Today his ventilator settings were decreased, and he tolerated this fine. The goal is to wean him off what is called forced air ventilation (I think) and on to what is called volume ventilation. The forced air ventilation forces air into his lungs and breathes for him. The problem with this is that prolonged use of this type of ventilation causes damage, and as he has been on a ventilator in the past, it is very important that he get off forced ventilation as quickly as possible. With volume ventilation, Mr. Bug will breathe on his own, but a LOT of O2 will be blown into his lungs, kind of forcing it down into all his airways. As of now, the lung disease has made his lungs very stiff, so they can’t expand or contract very well. I think it is kind of like when you injure your arm muscles and then your arm gets stiff for a while and you can’t move it very well, but after a few days, even though it still hurts, you can begin to use your arm much more effectively. Enough time appears to have passed so that Mr. Bug’s lungs are more elastic, and he is able to tolerate less pressure holding his lungs open. He was on a setting of 16, which is the highest setting one can sustain without certainly causing damage. He is now on a setting of 11, which is moderate, and he needs to be on a setting of 5-10 in order to switch to the volume ventilator. We are hoping that in a day or so an attempt can be made to switch him over. This does not mean that his lungs are any better. If anything, the x-rays show that they are slightly worse. However, it does mean that his lungs are tolerating their new “normal” better, and this is very good news. The lung doctors are pretty disappointed that there has not been more healing in his lungs, and they are extremely concerned that some pretty extensive permanent, fatal damage has been done. However, they are cautiously optimistic that his lungs will heal up at leas somewhat, and hope that he can live free of the ventilator eventually. His other issue continues to be his kidneys. The kidney doctor is concerned that he has made no urine for over a week, and she is running out of time in the window when he can come off the dialysis with little or no kidney damage. Normal kids would be candidates for kidney transplants, but a kid like Mr. Bug would not have any real chance of receiving a kidney at this point in time. Everyone is waiting with bated breath for the most recent fungus antibody test to come back, as that will hopefully give the cheerful infectious disease team the green light on switching his antifungals to something nicer to the kidneys. There has been an increase in his g-tube feeds as well. This is important as he is currently on TPN Lipids, which is a kind of nutrition method where the nutrients are fed directly into your blood. The trouble with this method of feeding is that it causes liver failure. Oh, wait, we’ve already been there, done that! So they want to get him off the TPN ASAP.

Teeny tiny steps to recovery…very teeny. Please don’t become weary in prayer for our boy every single day! He NEEDS to be bathed in the healing power of the Holy Spirit!

We have all tried to resume our regular lives. I went back to work today, and a very special student brought me flowers!

  

From one of my very precious philosophy students!

Pretty much made my entire month! 🙂

I think while Mr. Baby Bug sleeps this disease off, it is time to focus on getting our running routine back and planting the garden. As Garrison Keillor once said, “Sometimes it helps just to get outside!” Oh, happinessssss!!!!!!!

Not many new things are happening today.  The incredibly cheery infectious disease team has decided that the antifungals have been so effective that they can change them to less invasive drugs, and Mr. Bug’s kidneys will hopefully respond with some function. They explained that with kids like Mr. Bug with short gut, they can’t give the safer drugs because they are oral, and they may not be properly absorbed. The only way to control the absorption, then, is to give the harsher version through an IV, and these versions overload the kidneys and the liver, so they try to get them off of them as soon as they possibly can. This is really good news that they are really working together to manage this illness in such a way that each organ has the least amount of damage in the end! Sitting in the PICU is very much like watching House! The big difference is that House usually finds some magic illness cured by some magic drug and the person is magically better in a very short time with no lasting problems. In real life, they find magical cures for magical illnesses, but patients don’t always walk out looking so chipper. We are praying that Mr. Bug is one of the ones who walks out miraculously healed in every way! The kidney doctor on call this week has a little different take on the probability that his kidneys will come back. Both she and the  main PICU doctor (AKA Neil Diamond) believe that if he can begin to heal up soon, his kidneys will resolve themselves completely, given enough time. 🙂 🙂 🙂 SO, we are still just waiting on those little lungs! He has been off of the blood pressure medication since yesterday, and his cells and vessels appear to have stopped leaking water, which means that he is overall looking better than even a few days ago! Everyone looks pretty happy about his progress, and instead of using words like “Kids how have this die from it” they are using words like, “Kids who start to get better progress to health in these ways.” We are unimaginably relieved, but we still understand that whereas a week ago his chances of survival were about .5%, today his chances of survival are about 10%. The odds are still very much against him, but his chances of living through this increase with every day of his improvement, even if that improvement is fairly slight! We were expecting next week’s doctor meeting to include a discussion of how to bring him off life support so he could die peacefully, and our social worker’s job this week was to find out how a foster/adoptive family goes about getting rights to bury their baby. I believe instead we will have a very earnest meeting about how to proceed with his care, to maintain the balance between his healing and his immuno suppression for his liver, and how to keep him from catching something else in the meantime! As the infectious disease doctor said this morning, the more plastic one has sticking out of one’s body, the higher one’s chance of catching something deadly.

So the big things to pray for are these:

1. Continued death and carnage as far as that fungus is concerned!

2. Protection and healing for his lungs!

3. Protection and healing for his kidneys!

4. Protection for his liver and heart!

5. That the new antifungals will continue to kill the fungus while allowing his liver and kidneys to heal up!

6. A keen eye for the infectious disease doctors as they test daily for new bugs in his body, that they will be able to kill anything new quickly and safely.

Right now, my biggest concern is for the other 3 babies. They appear to be worn out by all of this. During Mr. Bug’s rejection episode, they were able to come with me to the hospital for visits and we all hung out, went for walks, played on  the playgrounds, had all kinds of fun. This time, they can’t go very often, and they are missing their normal lives quite a bit.  They need prayer for peace in their little hearts about all of this!

Thank you all for your continued prayers for our baby! It will be very slow progress, and perhaps there will be setbacks, but I believe strongly that he will be celebrating a 3rd birthday, alive, in August!