Day +47

WBC 4.2

Sorry for the lack of update yesterday, but it was hectic and it's hard to keep up because with less nursing care, we have to be totally vigilant by the bedside with Max. It's been a tough couple of days. It's been 47 days since Max was transplanted and when looked at as total journey it seems like it's been a lot more bad than good. I know we should be glad that Max is engrafted and is still here with us, but damn, the lingering effects of sepsis, VRE, two intubations, and GVHD are just starting to take their toll on us as well as Max. There are so many departments managing his care and it is hard to keep it all on track. Sometimes we are called upon to make the best decisions for Max but we are barely getting enough sleep and we are not doctors and sometimes it is just too much. We are trying to put a consult together with us, nurses, and all the department doctors so that we can at least get everyone together in one room. We know we're getting outstanding care and that Max has been the recipient of a lot of bad luck, but we are feeling a little beat up too and we could use some more good news.

He's still struggling off the vent. I guess it's a matter of perspective. While we felt Max was doing OK off the vent, pulminology has a different opinion altogether. Max went into some minor distress this morning and it was decided that it was time to get Pulminology back involved with Max (ICU had been watching his breathing since he had been vented). We were a little dismayed that they had been away for so long, but glad they were back. Beginning at around noon today, they've begun to treat Max very aggressively. He was given nebulizer treatments every hour and then at 6 o'clock tonight he began a 4-hour constant Albuterol treatment. After this, they will review things again. He is still "junky," requiring suctioning down his throat and nose every four hours. The nebs are for his wheezing which had gone away but has resurfaced today. This constant Albuterol treatment was one of the last things they tried before Max went back on the vent last time so we're more than a little scared.

As for his GVHD, he stooled less than his usual amount yesterday so they postponed the flex scope of his rear end. This was probably good with this lungs beginning to decline. But when we look in the diapers, we don't see much to feel good about.

And in a surprise turn of events, we have a new team involved - Dermatology. Max's back has been bruising and in a couple of spots, the bruises have looked pretty severe. The best explanation is that his capillaries are losing the battle with his increased steroids during BDs (BDs are "bronchial drainage" hits that Max gets on his back and chest to loosen secretions). On his upper right shoulder it even looked sort of black and had a raised spot in the center. So the BMT fellow looked outside and the attending Dermatologist happened to be on the unit. They came in, looked at things and decided to do a biopsy. This involved a small circle-cutting tool twisting into his shoulder and then pulling out the skin sample. Then they stitched him up. They took two samples to be sure it's just a bad bruise and not some sort of mysterious infection.

Additionally, neurology was consulted because even though Max is a lot more awake now, he's "out of it" a lot of times. He's not himself, he doesn't have much personality, and he's kind of off in space. He was curious about something called steroid psychosis, where the patient gets a little delirious from being on high dose steroids. But once he went through Max's medicines, he thinks it's just the carry-over of his intubation sedation, and it may be 2 or 3 weeks before all things straighten out.

Is that it? Whew! With so much going on, it's hard to keep these updates short and sweet. Check out the photos section, we've finally got some new pix on the bottom of the page.

Thanks for reading this far, and thanks for supporting us.
--mike

Day +45

WBC 4.7

1:34am - Respiratory Therapy just left and it was someone who we've had a number of times in the past but hasn't had Max in about a month. He was so nice and he really gave Max the full service treatment. There's something to be said for nice people - they make all the difference. "RT" has been a huge part of Max's transplant because he has so many lung issues, and they are probably the most overworked department in the hospital. So when one of them really takes the time to take care of Max - extra care even - it means a lot. His breathing has been pretty stable again today. He still needs oxygen through the cannula but it's been turned down slightly. He's on a little less sedation now too, so when he's feisty he reaches up and pulls it out of his nose. It's kind of nice to see that feistiness, it qualifies in my book as an emotion, and it's nice to see some emotion.

Today the doctors told us what separates the levels of severity of gut GVHD and it's all in the amount of stool. Max's total amount is still nearly as high as it was before they started this round of steroids. It is looking a little bit better (less straight blood), so they are still not sure if it is working or not. They told us that if there isn't more improvement in the next couple of days, they will need to take another look inside (bottoms up!) and if so they will need to intubate again. We can't imagine Max going back on a vent, even if just for a procedure, because he's had so much trouble coming off the vent. But they have to do what they have to do and today I even joked that I want a rubber stamp made with my signature so anyone could just sign the release forms for these procedures. If they go in from the bottom while he is on the vent, they are also going to go in and do a bronchoscopy to clear out the upper lobe of his right lung which has remained collapsed for the last couple of days.

This is the fourth day in a row with a WBC drop but the doctors told us his number is still good, and there are going to be "lulls" in the counts.

We also want to alert everyone to a new website for another supergreat Hurler kid. His name is Anthony and he and his family are from Illinois, from the Quad Cities area. He's a twin, but his sister does not have Hurler. Here's the site: http://www.caringbridge.org/il/tonythetigre/index.htm

Please take the time to visit his site and wish him well, it's nice to get some support at any time, but especially heading into transplant. We met his family when they were still researching hospitals, and now that they are here they are going through all of the fears and emotions we went through in the beginning as well.

Finally, Margaret and I both visited the site of a family who lost their son very recently (to hepatoblastoma). They had been living at the Ronald McDonald House for a year and a half and while we didn't know them, Grace played with the boy's siblings a few times. We were reminded that "tomorrow" is not a promise. It is a gift. Somehow, with the pain of their loss so sharp they still have this wonderful advice: "Take a day off of work to be with your children. Even if it is to have fun. Do it. Don't wait. Don't put it off. If you have worked and earned a personal day, do it. Take them in your arms hug and love them. Just think of the great memory: "I took the day off of work and hugged and loved my kids all day. That's all we did."

Please take this advice,
--mike

Day +44

WBC 5.9

Max had a pretty stable day. Only a few dips in his sats when he was uncomfortable. The first half of my shift (I arrived at noon to relieve Mike) was spent trying to comfort Max. It could have been his gut bothering him, or he just could have been thirsty. He is so desperate for liquid it just breaks my heart. Too much fluid can irritate his gut and worsen his diaper situation. He tried 1 oz of Pedialyte and loved it and then was angry that his pacifier wasn't dispensing anything. We then tried dripping small amounts into his mouth with a syringe. At around 5 PM he finally began to settle in and has slept pretty well ever since (it is 1AM Sunday now).

Max's lungs sounded pretty clear today. At times he is "junky", but he just gave some great coughs all on his own. His treatments are every 4 hours now, which is easier for Max, and easier for me too. It is really hard to watch him go through the trauma of suctioning every 2 hours. We know it is a very necessary evil to keep him off the vent.

As far as the GVHD, we don't know what to think anymore. We had two diapers in the past 24 hours that had no visible blood in them. I was so happy when I saw one tonight I almost did a diaper dance. But then the nurse and I just went over his numbers for the day and he has stooled more and more frequently than he has in a number of days. We are wondering if the increase in oral fluid has anything to do with it.

We are on our first night without a one to one nurse and I don't think I am going to be able to sleep much (not that I sleep much anyway when I am here). It is scary but nice to know he has made enough progress to get to this point. The other day we were very against the nursing change, but today we feel okay. The nurses are paired with one other "light" patient and still spend most of their time in here. Today was the last day for the BMT fellow who has been so nice to us. We are so grateful for the care she has given Max and we are so sorry to see her go.

There are several children up here who are not doing well. It seems every time I walk past the family lounge someone is in there crying. Three patients have died on 4A in our 54 days here. Two children (non-transplant) that we know of from RMH have passed away as well. One can only imagine the suffering behind the 14 doors on this floor. Please pray for all of these families. Please also pray for Anthony, a one year old Hurler child who will be admitted next week for transplant.

-Margaret

Day +43

WBC 6.5

Before we get to Max, we have two important thank you's to go out: First to Margaret's sister Beth for hosting a Pampered Chef party in Max's name. The turnout was great and all who attended were so supportive of Max. Thank you to all who attended, and thank you Bethie for being such a good sister and a wonderful hostess! Meanwhile, across the country, today was the day of the Gorham, NH school cafeteria Ice Cream Sundae Party. It was a dollar per sundae and the event was a huge success. Thank you so much to everyone who worked on this for us. It means so much to know that Max has so many supporters around the country in his time of need.

As for the little guy, he made slight progress with his breathing today. Basically he was more consistent. He was able to handle the increased "deep suctions" of his nose and throat better today without desaturating much. He was also more awake today on less sedation, and I was able to hold him. He felt heavy even though he's looking a little skinny to us. He's getting a little stronger and he is once again using his videos for comfort. He has been manic for his oral medications, and hopefully that's a sign that he's ready to drink a bottle.

His stools had been starting to improve - less bloody and less watery. But tonight around midnight, I've seen a number of small diapers in a row with more bright red blood in them. It's still not the worst I've seen (it's close), but it seems like a step back from the progress of the last day or so.

Gracie is really enjoying having her transplant buddy Kendall back at the Ronald McDonald House. Grace visited her every time she came to visit Max, and she's happy to have her "home." Also, Max's British girlfriend Sophie found out today that she's 100% engrafted. She's a little cutie and she's been doing so well. Things haven't been as quick for our guy, but we're so happy for her because her family has been so nice and supportive of us. Please be sure to find her link on this site and say congratulations.

Thanks again for all the support. We really need it - especially lately!

--mike

Day +42

WBC 5.4

The stress continues. Mike and I both feel like we could explode into a million pieces at any moment. Max ran into some breathing trouble last night and has dipped quite a few times today. Just what we were worried about and why we were fighting to keep the one to one nursing care. Yesterday evening Mike was told that Max would be on two to one today, but his desaturations have kept him one to one at this point.

Max is now getting breathing treatments every 2 hours. So you know what Max is going through, here is his current respiratory plan:

Albuterol or Xopenex nebs every 2 hours Atrovent every 6 hours. Deep suction every 2 hours (a suction catheter is stuck down his nose or throat to try and get him to cough) BD's every 2 hours (the RT uses a plastic mask and hits Max repeatedly on the lungs to loosen the secretions) Pulmicort (inhaled steroid) 2 times a day

As you can imagine, Max does not get much sleep, but the doctor said it is a necessary evil right now if we want to keep him off the vent. He is coughing spontaneously sometimes and hopefully he will start to do this more.

His diapers have remained the same, and tonight his feet seemed red, so we will have to discuss this with the docs tomorrow. We are very anxious to see a change and get some reassurance that the steroids are working.

I got to hold Max 2 times today! I got to hold him very briefly when he was extubated last time, but Mike hasn't held him in about 4 weeks. I am sure Mike will get a turn tomorrow. He did well both times I held him. He is so weak that it is like holding a giant infant. He has no head control yet. He is moving more in general, and is more awake too. He tries to get away from the nebs by shaking his head and he closes his mouth tight when they try and get in his mouth to suction. The doc gave the okay for Max to suck on a toothete (tiny sponge on a stick used to clean his mouth) soaked in 5cc of water every 8 hours. Seeing as he hasn't had anything to eat or drink in 4 weeks or so, he absolutely loves it. He also sucks down his oral meds. He is so thirsty! I cannot wait until he can drink a bottle again. He is so skinny that his nickname Bubba hardly fits anymore. No more Bubba cheeks, legs or arms. Max started cutting a new tooth while on the vent. At least he can get some narcotics while teething!

In other news, Grace's friend Kendall was discharged from the hospital today. She is back at the RMH and she and Grace have already played together. They also posed for a RMH Christmas card. I am really hoping the pictures come out. If they do, I think the RMH will raise a lot of money from them from me alone!

Max is getting fussy so I better get going. Pray for clear lungs, healthy gut and strength.

-Margaret

Day +41

WBC 5.5

What a day, what a stressful day. But a good day too. Max is fairly stable off the vent. In fact, now, it's after midnight and it's the best he's saturated all day. Way to go Max! The stress comes from the desire to fairly quickly transition us out of a one-to-one room situation. We've had a nurse full-time in Max's room for 3 weeks now and while it's a sign of progress to return to the general fold, it's a little scary. Max was reintubated within 48 hours the first time and we had hoped to keep this personal attention for at least that long. Mostly we're afraid of being too sleepy at night to hear one of Max's alarms. We're just going to have to make sure that the nurses stay vigilant with our little guy.

As for the diapers, well, they're still very bloody. Last night Margaret was around for the worst one yet -- bright red blood spilling out onto the sheets. Today's sign of progress is that the stool (can we even still call it that?) is a little darker, and maybe more "clotty" But tonight we still had a nasty one to contend with. Sorry to be so graphic, but that's the way it is. When one of these bad boys is brewing, Max's saturations drop, his belly convulses, his face grimaces, and he needs help with pain meds. However, we've got a doctor now that still remains unimpressed with Max's diapers. He is confident the new doses of steroids are going to work. But he asking us to be patient as it will take a few days to see effects.

The bloody stool and the newly freed up airway are the lingering concerns for Max. He is engrafted, his white blood cells and neutrophils are climbing, and overall clinically he is doing very well. We are very stressed from worry and lack of sleep. We have been impressed with the care we have received at every step of the way here in Minnesota, but at the same time we have been surprised by just how exhausting it can be to be so involved with the care. But we know that we are the best advocates for Max and at his age we have to be his voice. Of course, now that he's off the vent, we can hear his real voice, so frail and tired, coming back to us from days not long ago.

He's still very sleepy from the sedation he needs. He's not strong enough to hold his head up or to roll over or anything like that. But his eyes are open a lot more and he's been able to watch his movies. I keep telling him, "You're awake! What a nap! What did you dream about?" And I feel like he's saying back, "Mozart . . . puppets . . .Bach . . . Chicken with Chicken Gravy . . . animals . . . and Julie Clark, always Julie Clark."

Temperatures dropping rapidly up here: the coats are on, the hoods are up.

--mike

Day +40

Tuesday Evening Special Update!!!

Max was extubated at about 5:15 this evening. 45 minutes into breathing on his own, he is doing well. He is on a nasal canula at 3 L of O2 and his sats are in the mid to high 90s. His lungs sound a but junky, so we need him to cough some stuff up now that he will not be getting suctioned like he was on the vent. Please pray Max has the strength to stay off the vent and that his sensitive lungs don't start wheezing again!

__________________________________________________________________________
WBC 2.9

The results of Max's biopsy showed that he still has active GVH in his gut. He has even more blood in his stool. The afternoon he stooled about 120cc of straight blood. I cannot describe how I felt when I saw this happening to him. While it is not completely unheard of, it is somewhat strange that his skin and liver responded to the ATG but his gut did not. They doubled the amount of steroids he is getting to try and treat it. The steroids come with their own set of problems, one of which is irritation to the gut so they also increased his antacid. The increased steroids also make him more susceptible to infection.

On a much more positive note, he is currently in the middle of a pressure support trial to see if he is really ready to get off the vent. He is doing excellent. Now that they know what is going on in his gut he does not need a CT scan and could come off the vent this afternoon or tomorrow. It depends on how well he does on the trail and the availability of the ICU attending. He wants to be present when the tube is removed. Max has been much more alert the past couple of days and it is so nice to see his eyes. We want our son to come back to us so badly. We are both excited and very scared at the removal of the vent. We hope and pray this time it is for good and that he can remain comfortable gut-wise.

In other news, our neighbor and friend Jodi Heiss has been working hard at fund raising. She is a Creative Memories Consultant and she hosted a CM party at my sister's house a few weeks ago. We recently received a card from Jodi with the proceeds for the event and we were so overwhelmed by the generosity of friends, family and strangers! Jodi is also planning another event which will involve a raffle. Web Mistress Chris will be posting more info on this soon. My sister Beth is hosting a Pampered Chef party at her house on Thursday as well. We cannot thank everyone enough.

I will send another mini update tonight if Max comes off the vent. Please send some hot prayers our way.

Love,
Margaret

Day +29

WBC 2.5

All in all, things are continuing to go well. He's even been growing his white count a little bit in the last couple of days without needing the growth factor. He's almost 40 days out from Day Zero and the time has flown by. While some kids are lucky to be out of the hospital by this point, we're still encouraged by Max's progress - and by the support we've received from all of you. Please go back and read the last couple of updates since they include some important thank you's and some information about some outstanding generosity we've received lately.

Also today we saw Anthony, another little dude with Hurler who's from Illinois. He's a twin, but his sister doesn't have the disease. He'll be starting everything very soon so please add him to your kind thoughts and prayers.

Here's the latest on Max: Sunday was fairly uneventful. Max has continued his progress on the vent and is ready to be extubated. But it is on hold because of his gastrointestinal issues. He has continued to have bloody stools and it appears that one of two things is happening: 1. His GVHD of his guts is not responding enough to the ATG and steroids he is on and he will need the next level of treatment. 2. The bleeding has some other explanation.

So the plan is to do a "flex scope" today of his lower GI system from below. They did this before to confirm that he had GVHD. If they see some residual bleeding from his previous biopsy, they can cauterize it at this time. Also they will be doing a new biopsy and results will confirm or deny GVHD by tomorrow mid-day. Because this is a scope, they also can look around and can compare the general health of the region to what was seen before.

If it comes back negative, they will do a CT scan. This will involve transporting Max while he is on a vent. They unplug the vent and have to "bag him" through the whole procedure. The CT Scan can only show the location of bleeding, but can't necessarily explain the cause.

So more mysteries to be solved. Where is Angela Lansbury to solve this one? Wouldn't it be great if she could just ride in on that bike with the basket on the front and have all the answers? What am I talking about?
--mike

Day +37

WBC 2.2

Same old, same old. Again, that's a good thing. Max continued his progress on the vent and has neared a point where extubation is possible. We have been through this before, so it's like Yogi Berra says - deja vu all over again. In fact, even when he was first born it was the second time they took him off the vent that he was really able to do well on his own. Let's hope history repeats itself. That said, Max may not come off today so we'll keep our fingers crossed. In graft vs. host news, Dr. Billy Rubin says his liver is doing well, but otherwise we're not so sure. Max's skin improved so much, but now we're thinking it looks red again. And while he seems more comfortable overall, he is still making a lot of stools that are bloody red-brown and aren't too fun to look at.

Otherwise, it's been nice having Granny for such a long time (and what a gift to her if she's here to see Max get off the vent!) and yesterday Auntie Beth, Uncle Vince, and cousin Vinny drove north to be with us as well. Grace really got a kick out of her cousin who is talking so much and had a blast motoring around the play rooms at Ronald Mcdonald. What are we going to do after Sunday? It will be the last day we have family help here for a while and we're going to miss it. We know families out here are getting by without any help or spouses are getting by without each other, and we are so grateful for all of the sacrifices people are making to provide us with such great care. Thank you.

Thanks also to our friends overseas, Padraic & Tina, for finding a home for our updates until our webmistress Chris returns from the aftermath of Hurricane Isabel. Don't forget to check on their little Sophie often. She's Max's future European girlfriend I think. Tell her to eat lots of Wotsits!

Please continue to pray for Max and for all the kids here at the hospital and for all the kids fighting for their lives. It really makes a huge difference.
All the best,
--mike

Day +36

WBC 2.2


Hey Max Fans!

Friday was mostly a day of small progress on the vent. Sometime during Thursday night Max's saturations began to improve and they were able to finally turn the knobs down a little more aggressively and the talk of extubation became a little more serious. So now it seems sooner rather than later again, but no real timetable yet.

Other issues: GVH of skin looks amazingly better, GVH of liver has improved again, but it's really hard to tell if the gastrointestinal GVH has been responding. He is still very uncomfortable when he stools and when he does, it is quite bloody. In addition he's had some blood in his OG tube (tube up from his stomach) and in his ET tube (breathing tube) so they are going to continue to watch all of this. There could be many reasons for this, but they are hoping for a more obvious explanation (continued effects of GVHD) rather than a rarer one (internal bleeding, ulcer, etc.) As Uncle Marko would say, expect the horse, not the zebra.

Elsewhere in the extended world of Max, the Generosity Express (choo! choo!) has apparently picked up steam. The good people of the school district of Gorham, NH - high school teachers, elementary school teachers, superintendent, and others - collected money together for Max and presented it to my parents today. First they were incredibly touched by the gesture, then they were truly blown away by the generosity. When I talked to them today, they were so moved and so happy to be able to stretch this aid across the country to us. Many of these people have become Max fans because of their relationship to my parents and many even still remember me as a student (be nice to your teachers!) but many of these people are not close to any of us but have been touched by Max's story. To all of you: THANK YOU SO MUCH!

The night before, we found out that a women's group in Park Ridge (IL) has chosen Max for an annual fundraiser. Mary Beth Micucci submitted Max's name. I don't have all the details here at the hospital, but again, THANK YOU so much for doing this, we had no idea Max would be able to be a recipient for this kind of help. I'm sure Margaret can explain more in tomorrow's update.

We have received support in so many different ways, both big and small. But there are still many of you who feel like you are not doing enough. Believe us when we tell you that we appreciate even the smallest gestures. Lately we've seen improvement in Max and we know he couldn't have done it without your prayers and kind words. As for us, we've received so many little care packages (especially so many sweet treats) that we really feel so much love and care around us. It's odd to say this under the circumstances, but even now we feel very lucky.

We are blessed,
--mike

Day +35

WBC 2.9

We have some good news today. The doctor came in and told us the results of Max's RFLP test from 9/4 - he is 100% engrafted! We knew he was engrafting because of his enzyme level and because of his GVH, but we did not know how much until today. What a blessing! When Mike told Grace that Max has all new blood now Grace said, "Hooray! Now we can all be a family again!"

There is not much more news to report. Besides a few moments of agitation and nose rubbing, Max has been stable and restful all day. His blood pressure has been good since they increased one of his medications. We kind of feel like we are in a holding pattern, but we rather have this than the wrong kind of excitement.

Auntie Bethie, Uncle Vince and Cousin Vinny arrive tomorrow and will be staying through the weekend. They will take Grannie back to Chicago when they leave. Grace is very excited to see her cousin Babarino (Vinny) and so am I.

Thanks for all of your prayers. Please keep praying for Max and all the other children up here. Max is one of 3 transplant patients in ICU.

-Margaret

Day +34

WBC 1.6

It's been kind of a slow day so I thought I'd write the update a little early. Also, we've seen just about all the doctors we're going to see, so I've got all the news that's fit to print.

Max is finished with this round of ATG. This rabbit ATG will still be hopping around in his system for a couple more weeks, but the six-hour infusions are done. Hopefully this medicine in him is less reactive overall and if Max can move again towards extubation it will not have an effect. As for extubation itself, that seems a ways away. His lungs continue to have pockets of collapse and he's not totally opened up yet. Today they're going to start something called "Muco-mist" which is some sort of nebulized treatment that helps open up the lungs. Apparently it smells like rotten eggs so that's something to look forward to.

The doctors have done much to calm our nerves in the last couple of days. We've been told (in the face of much incredulity) that there is nothing extraordinarily frightening about Max's condition. When I brought up the fact that it might be because they've seen hundreds of transplant kids and scores of Hurler kids, the doctor told me again that there is nothing that's making his heart race. I said, well, everything is making my heart race and he said, of course, if it was his kid he'd be doing the same thing.

That said, Max needs to make a lot of progress. He needs to beat GVHD (so far he is starting to respond to the ATG). He needs to get his lungs clear and be extubated. He needs to grow cells (he's going back on the growth factor for a day to help the neutrophils grow). That's a lot of stuff! But hopefully Max will just continue to mosey along down the path to better health one day at a time.

One important thing I didn't really make clear a few days ago: as scared as we were and as hard as it was to watch Max's chest work so hard . . . he never gave up. He was keeping his saturations in the low 90s even though he had to be so uncomfortable. What an inspiration! We wish we had his strength.

Thanks for all the support and birthday wishes,

--mike

day +33

WBC 2.2

Let me start by thanking everyone who worked so hard to give me such a great birthday. I woke up at the hospital feeling very depressed and not at all wanting to celebrate. But then I received a call from a very excited Grace. She was so thrilled that it was my birthday and it made me feel like celebrating some. I received so many nice emails, cards and packages and I was so touched. Mike and I were able to go on a date too. Max had his primary nurse Annmarie so we knew he was in very good hands. And the BMT fellow offered to stick around while we were out to make us feel more comfortable. The staff here is so wonderful. They signed a birthday card for me that Michael bought and everyone wished me a happy birthday. Now for the important stuff...

Max had a pretty quiet day today. He is no longer on the paralytic, but isn't very active. He rubs his eyes and nose sometimes but that is it. His tummy is pretty swollen today so they ordered an ultrasound of the liver, stomach, kidneys and bladder. The doctor came to talk to me a little while ago and said none of the results were surprising. He has some fluid in his abdomen because his veins are a bit leaky, which is pretty normal. He has what appears to be a small gall stone, but it may be some "sludge" caused by a lack of eating. His liver and kidneys looked okay. The vein leading to the spleen has some retrograde flow, and they are not sure why that is happening.

His body temperature has been low for the past few days and they cultured his blood to check for infection. Sometimes kids go the other direction when they have an infection and get cold instead of hot. He finished his last dose of rabbit ATG today! Hopefully it will take care of his GVH. His skin is looking better and his liver seems to be responding a little. Now only if his gut would too I am sure he would feel much better.

Thanks again and again for all the wonderful birthday wishes. I could not have asked for a better birthday under the circumstances.

-Margaret

Day +32

WBC 3.6

Happy Birthday Margaret!!!

The doctors just left and overall we were a little encouraged. They are looking at the reintubation as a bridge to get him over the troubles of GVH. So far his skin and liver have responded to the ATG and they expect his GI to follow.

What's most disappointing is that they put Max on a paralytic and he is totally immobile. They also put a peripheral IV on the top of his head because they needed one more place to get medicine. Now he can't wear his Superman hat. We've come to learn that Max's asthma is a little bit of a curveball for the doctors here. They've seen a lot of Hurler patients and all are unique, but Max's asthma seems to be more a problem than most. Ultimately we're back on the vent because his asthma was aggravated too much by either the GVH he's suffering from or from the medicine being used to treat it. Either way, rather than fight these battles simultaneously, they're fighting them sequentially and the GVH is being attacked first.

Also, today is Margaret's birthday. I'm not going to say how old she is, I'll just say that it rhymes with "dirty". She's a little down today (she had hoped Max would be extubated for her birthday, and he was . . . but . . .) and whether she likes it or not, we're going to do our best to give her the best birthday possible. With Max down and out, it's up to the rest of us to help her enjoy her day as much as possible. I couldn't ask for a better wife or friend, and to see her with Max is to see what love really is.

Thanks for all kind words and support, it's meant so much. It's nice to know that Max (and us!) have so many cheerleaders.

--mike

Day +31

After working very hard to breathe for 2 days Max has been reintubated. The doctors tried many things to try and stop his wheezing. The BMT and pulmonary doctors were becoming increasingly worried that Max was working too hard and was going to tire and end up in an emergency situation. The ICU doctor was willing to give him more time to see if the meds would take effect, but finally the decision was made and the tube went in.

So many things have been tried over the past few days I am not sure if I can relate all of them. The most likely culprit for the wheezing is the ATG he received for his GVH. They have not yet started the rabbit ATG today because his breathing never stabilized enough to give it. Now that he is on the vent he will catch up on his meds. They are running into some medicine compatibility problems again because of all of the new medications, and hopefully they will be able to work those out without having to give him another line.

The pulmonary and ICU docs mentioned that his current lung issues might be caused by GVH in the lung, but the BMT docs do not believe this to be the case right now. His skin, liver and gut seem to have responded a little to the creams, steroids and day of horse ATG he received. We hope and pray that the new ATG will get things under control.

The steroids elevated his glucose level so now he is on insulin. He has been given a lot of sedation and a paralytic so that he can rest. The reintubation itself went smoothly.

I wish I could paint a better picture of what things are like here so those of you who are far from us could understand. I don't really think it is possible to put into words the stress and heartache we feel. Things change from moment to moment and just when you begin to feel optimistic things change again. I know no one wants to hear this but it is truly hard to feel hopeful at times.

Please continue to pray for Max as we know you all will. We love and miss our son so very much.

-Margaret

Day +30

WBC 5.0

What a long, tough, day. Margaret was up most of the night trying to calm Max and keep him from getting too agitated. He had been having a lot of difficulty breathing in a relaxed state and his oxygen saturation was dropping frequently. By the morning the difficulty continued and she called for me to come over because she was so tired. Soon after I arrived Max began to have quite a bit of respiratory distress and things got pretty scary. Two ICU fellows, the BMT fellow and attending, and a respiratory therapist were soon in the room trying to figure out what to do. They decided to treat Max as if he was having a massive asthma attack.

First they suggested putting Max back on Bi-Pap and they even tried it but Max just fought it off. He was just too uncomfortable and the ICU docs felt that they really couldn't give him any more sedation. So, Max stayed on a basic mask. But they decided to put him on a continuous stream of Albuterol with 100% oxygen flowing in as well. As far as the breathing treatments, there's nowhere else to go. He can't get anymore oxygen and we can't call for a breathing treatment because he's on a constant one.

In addition they more than doubled his steroids hoping to open up his airways and they are changing from ATG (his medicine for Graft vs. Host) that was made inside a horse to ATG from a rabbit. This is to try and see if Max's body reacts differently to a different form of ATG.

So, where are we now? It's 11 o'clock and Max's saturations are finally a little more stable. But not much. His chest and belly are still heaving and he looks like he is working too hard. If he's having an asthma attack, he's been having it for 15 hours so far and one wonders how long this can last. Hopefully he will remain peaceful and acclimate to this situation. If so they can think about slowly weaning him down.

We are beginning to wonder how many times Max is going to pick himself up when it seems he is destined to be knocked down all the time. Finding out he had enzymes and getting extubated were great news. But the enzymes won't mean a thing if they don't get his GVH under control. And being extubated so far hasn't been wonderful. I've seen Max in excruciating pain with constant watery diarrhea, I've seen him feverish and throwing up everything that goes in him, I've seen him turn yellow and sickly from liver difficulties, I've seen him gain and lose weight from fluid imbalances, and I've seen him unable to maintain basic levels of blood pressure. And I've seen all of this in the last 2 weeks. But nothing compares to seeing your child struggle to breathe, the most basic and necessary of all functions. From across the room I can hear him wheeze now.

Let's be absolutely clear: Max has three huge problems:
He has an ongoing strep-like infection called VRE which is very difficult to get under control when immunosuppressed.

He has moderate GVH that has been tested positive in his gastrointestinal system but clearly is all over his skin and is probably affecting his liver.
Max has serious airway issues requiring just about everything but being put on a respirator (again). He is very sick. He is very uncomfortable. He still requires 24-hour ICU care.
I should be up most of the night, if there is any good news to report in the morning I will. Otherwise, it is very busy in the room these days, so updates may have to come a little slower. Then again it is Saturday night so we know our readership is down anyway.
---mike

Day +29

WBC 5.7

Max has had quite a day. He was extubated at around 12 pm. He has been on an oxygen mask and until late this afternoon was saturating well. His sats dropped suddenly into the 80s. ICU came down and thought his airway was reacting. It is fairly common for kids to have some trouble during the first 24 hours after extubation. His asthma makes things worse. Please pray that Max can make it through this. They have brought the dreaded c-pap machine in here just in case and another chest x-ray was done. He has a new mask on now that delivers humidity along with the oxygen. As of 11:30 tonight he is saturating well when he is calm, but he dips quite a bit when he is upset.

HIs GVHD is described as moderate (the stages are mild, moderate, severe). He is really uncomfortable when he poops. His stools are much bloodier than ever before and his skin is really red. They are attributing the liver changes to the GVHD as well. He has been on steroids for a while so they added ATG to fight the GVH. If you recall, ATG was one of his chemo drugs. He had a hard time with this drug. It is an immunosuppresant. They are hoping it will suppress the lyphocytes (sp?), the part of the white blood cells that cause GVH, but not the neutrophils.

His blood pressure is also way up and they are trying hard to control it. They just switched one of his bp meds because the one he was on can contribute to reactive airway problems.

Getting off the vent was a very big step but he is far from being out of the woods breathing wise. It is extremely difficult to see him so uncomfortable. They are trying to ease his pain with meds that will not slow his breathing.

PRAY HARD PLEASE!

-Margaret

_____________________________________

WBC 5.7

Hello again, what you read yesterday was a very exciting update. But I asked us all not to get ahead of ourselves and here' s why: Max has Grade 2 to 3 gastrointestinal GVH (graft vs. host disease). This means that yes indeed, donor cells are growing inside Max. It also means that they don't like their new home. The effects of this GVH so far had been all in the form of diarrhea and abdominal pain. But now Max's skin rash (skin GVH) is worsening too. Also, his bilirubin is elevated which could either be a drug reaction or the sign of some stress on his liver. So while the message below is pretty positive, we didn't have the latest news. The doctors will explain things to us soon and we will update again tonight. Also, the WBC drop (from 8.9!) is hopefully just a result of stopping a growth hormone.

More to come,
Mike

Day +28

WBC 8.9
ANC 5.5

Max has enzymes! We came here to Minnesota because Max needed them and they are here! The transplanted cells have grown enough inside him to give him an enzyme level of 46. This is up from zero. What does this mean? Well, probably it means that the donor cells are growing inside Max. The engraftment results are still not in so we don't know how much Max has engrafted. We also don't know what to expect about the enzyme level. We know that all numbers can go up and down so we hope that with a number like 46 we can go either way. But this IS good news, and we are definitely excited about it. We just can't get ahead of ourselves when there is such a long way to go.

Max started his day by having a flexible camera inserted into his buttski and a small biopsy was done from the inside. This was done to test for gastrointestinal GVH, but the results didn't come back today. They should be in tomorrow. The GI doctor thought that Max's insides looked fairly good, but we won't know for sure for a little while. His stools continue to look awful, and worse. Watery, dark, lots of mucous-- if we had to guess, it would be GVH, but we hope not. If it is, steroids will begin immediately.

At around 1 o'clock they noticed Max's hemoglobin (red blood cells) had dropped by 3 points. This seemed to be alarming to the nurses and doctors. It didn't appear to be procedural because the amount of blood lost from a small biopsy shouldn't account for that kind of loss. His abdomen was x-rayed (nothing remarkable), his heart rate and BP remained stable, and his lungs continue to sound clear. He was given more hemoglobin and they are watching it tonight. So, another mystery. The fellow said today that "Max has obviously NOT read the medical books" because he continues to behave in ways they are not expecting. Hopefully there will be an explanation for this tomorrow.

As for being on the vent: The ICU doctor felt that Max is getting very close to being able to be extubated. He continues to do well on the pressure support trials. For periods of time, he is breathing without the vent, only with a little extra oxygen. He is our little champ and I can't wait until I can hear his coughs and cries again. When he's mad he's just so silent, and that's twice as sad as seeing and hearing it for real.

Lots of reasons to feel good today. Thanks for everyone's support. Please continue to visit the Hurler families on our site, they have emailed us and thanked us for your support. Keep it up!

Gotta go, Max just dropped a diaper bomb on the nurse,

Mike

Day +27

WBC 7.1
ANC 6.3

I’ve added a new feature to our update – the absolute neutrophil count, or ANC for short. The neutrophils are a part of the WBC that fight infection. Kids get a "hall pass" when their ANC is greater than .5 for three consecutive days. Why am I mentioning this now? Well, I realized today that if Max wasn't on the vent he'd be able to venture out into the hallway.

Max had two very significant events today. He had two pressure support trials, where they turn down the vent and see how he does breathing on his own. He is getting them once a shift and they last 2 hours. Once they are done they check his blood gases. He did very well with his trial this afternoon and is finishing up another right now. So far so good, but we won't have the blood gas back for a little while. He should have another trial during the night. If he continues to do well with the trials then they will keep extending the length of them. The ICU fellow told me that if he is handling 4 hour trials well then it is a sign he is ready to come off the vent. His chest x-ray showed improvement in the left ventricle as well. Every four hours he gets his albuterol inhaler and he is suctioned and vibrated.

Unfortunately he spiked a temp this evening of 100.8. He received Tylenol and his blood was sent to the lab for cultures. We joked that the lab is going to have to open up a separate room for all of the cultures they have taken from Max.

Tomorrow the GI team will be performing a scope and biopsy of Max's intestine to check for GVHD. His diarrhea continues and he still has a rash on his legs and arms. The rash has been around for a week now and at times it seems to fade or flare up. The biopsy will tell us more. If it is GVHD they will treat it with steroids and hopefully it will respond.

As you probably noticed his counts are sky rocketing, so they took Max off his G-CSF (growth hormone). We hope and pray that they are donor cells growing not Max's cells rebounding after the sepsis.

Thanks for your continued support. Please pray for Max's Hurler friend Sophie. She is a beautiful baby girl in England who got her transplant today. Her link is http://www.melroseroad.co.uk/ if you would like to leave a message in her guest book.

-Margaret

Day +26

WBC 3.8

Today Margaret, Grannie & Grace celebrated girls day (or "Girl Scout Day", Troop #99 as Grace called it) with a trip out for haircuts and lunch while the boys held down the fort at the hospital. Max's big event was another bronchoscopy. His lower left lung didn't show much improvement since yesterday so they decided to take a look around.

I got to stay in the room, and it was pretty cool to see Max from the inside out. A bronchoscopy involves sticking a tiny camera down his breathing tube. The fellow operated the camera and the doctor was there to guide him if he made any wrong turns. It was kind of like sitting in the back seat for many of the trips to New Jersey with my parents. But I digress. Once inside they washed out the affected area and also took note of the general health of the lung. You could see some of the mucus and blood and some of it came all the way out and went in a jar for testing. We should know some more about what's going on tomorrow and in the coming days. Overall, the doctor was surprised to see a healthier lung than she expected. As for extubation, his lung needs to continue to improve and the x-rays need to remain clear before they can challenge him again but that is looking like it will be in the coming days.

Max is still unable to talk to us and overall is still very much "out of it." In addition he is molting. I don't know what kind of creature is going to come out of his skin but I'll bet it's an angry one from being kept down for so long. He also is a little rashy on his legs but so far there isn't need to biopsy for GVH. His favorite activity is to rub his forehead and nose with the back of his hand. This seems like very deliberate behavior, but he doesn't really wake up for it. He just rubs in his sleep. It's hard to be patient with our patient at this point, we want that tube out, but he needs it in order to heal up. He is, without a doubt, going in the right direction. Not necessarily in a straight line, but in the right direction. The best evidence of that is that his counts continue to climb.

Thanks for all the support on the website, your notes to us are our little buoys to keep us afloat. Please continue to pray for Max and for us and for all the families of sick children.

Good night,

--mike

Day +25

WBC 2.0

Go white blood cells! Two steps forward, two steps back. That is the way it has always been for Mighty Max. Yesterday they lowered Max's vent settings and spoke of extubating him today or tomorrow. The BMT resident also scheduled a pressure support trial (which is a test to see if he is ready to come off the vent), which got our hopes up. But then Max's chest x-ray from this morning showed that his lower left lung had filled with some fluid and partially collapsed. Needless to say, the pressure test and talks of extubation were put on hold. We were so disappointed. They raised the vent settings and are suctioning his lungs a lot. They took a sample of the fluid to test it.

The amount of fluid from Max’s og tube (similar to the ng tube he had as a preemie) pretty much stopped today. This tube pulls the fluid from his tummy. It had been pulling a lot of fluid prior to today. They replaced his tube in case that was the problem, and it seems to be pulling a little more out. On the flip side, he began stooling a lot today. I am not sure if the two are related or not. There has been a little blood in both types of output.

Max is shedding his skin like crazy. The poor boy looks as if he has spent days and days in a tanning booth. The doctors attribute this to one of his chemo drugs, Busulfan.

After consulting with the infectious disease doctors, they put Max on a new antibiotic called Synercid to fight the VRE. We are anxious to discuss this with the BMT attending doctor, as we were told the WBC could take a hit with this drug. We continue to wear gowns and gloves in the room. Grace came to see Max today and looked very cute in her enormous gown and floppy purple gloves.

Speaking of Grace, she has had it with Max being in the hospital. Yesterday she told me that she wanted to go back to Illinois so we could all be a family again : ( She is surrounded by sick kids at RMH, and she asked me what type of disease she had. We wonder what is going on in her head throughout all of this. Today she played with a Child Life Specialist and they have plans to meet again tomorrow. They do some medical play as well as other things. Grace really seems to enjoy it. Maybe it will help her cope with things more. Grannie, Grace and I are going to have a “ladies day” tomorrow.

Aunt Dana left early this morning. She and Uncle Geoff will be traveling to London for Geoff’s graduation from business school. Congrats Geoff and congrats to Grace’s friend and Max’s BMT neighbor Kendall. Her parents found out today that she is 100% engrafted. She is all donor cells!

Please continue to pray for Max and his BMT and Hurler friends. It is so hard to see him like this. What I wouldn’t give just to hold him again, or for him to smile at me. Hug your kids!

-Margaret

Day +24

WBC 0.9


Today was another day of baby steps forward regarding the ventilator. Small adjustments were made to decrease the number of breaths the machine was making for Max and the overall oxygen percentage remained low. The also lowered the sedation a little bit so Max was able to open his eyes a few times and squeeze our fingers a few times.

Overall he is continuing to better live with the effects of sepsis. It’s far from gone, but he is doing okay and it is described as being “under better control.” He is regulating his blood pressure very well and hasn’t had any high fevers.

He does, however, have a new cause for concern. He has a bacterial infection that is not responding to Vancomycin (one of the many broad spectrum antibiotics he is on) and is therefore known as VRE Vancomycin Resistant Enterococci. This is most probably an infection that he got in the hospital. We are now in “contact isolation” which means that we have to wear full-body gowns and gloves and so does everyone who comes in the room. The danger is not to Max, he already has it, but it’s to keep it from spreading further out to the other kids. But who kept Max from getting it? We’ll never know. Since he is improving overall, they are still going to keep him on the same regimen because the “Vanco” may be helping to fight other bad things in and around Max. This new infection may or may not have had an effect on the original sepsis, but hopefully this is something that they can get under control until Max’s immune system can get stronger. As long as it doesn’t grow too much and spread, he’ll be OK. We will learn a lot more about this tomorrow.

We were feeling more optimistic today and took advantage of our help to have a little lunch date with each other. Grannie stayed with Max and Auntie Dana went on a guided tour of Ronald McDonald House with Grace so we could have a little pasta from Maggiano’s in our room. It’s the first alone time we’ve had in about a month and it was nice to say the least. We have so little time for each other that a little reheated pasta goes a long way. Thank you Dana for helping us this weekend, and thanks for bringing the angel hair up from Chicago!

We haven’t talked to Grace’s friend Kendall’s parents recently but they were on schedule to get out very soon, maybe even by the time most of you read this. Congratulations Kendall! Also, Aaron Athy, is in a hospital now fighting his own little bugs and we want to say thanks to Aaron’s Mom for encouraging so much support to come our way and we hope you know it’s coming back from us just as strong.

Good night,

Mike

Day +23

WBC 0.7

Max had another uneventful day today. His WBC is up, which is good. The number they watch for his kidney function improved slightly. His chest x-ray showed a slight return of the mucus in his lung but it was still considered to be the consequences of the first wave of infection and nothing too serious. Dr. Milla will reassess things in the morning and may do another bronchoscopy. His lungs were suctioned many times today. Dr. Sweeney (unrelated to my mom!), the ICU doc who intubated Max just came in and lowered the vent settings slightly. Max also (mostly because of hospital laundry issues) was back in some regular clothes and even wore his superman hat.

Max had many visitors today. Grannie is still here and Auntie Dana came up for the weekend. Dana brought some food from my favorite restaurant back home - what a treat! Grampa J also stopped by as part of his vacation in Wisconsin, and my Aunt Eileen and cousin Jean made a surprise drive north from Chicago with gift bags for all the kids at the RMH and a special bag for Grace. I haven't seen either of them since our wedding 7 1/2 years ago (yes, we've been married that long), so it was extraordinary that they made the trip up to see us. With Max in still such critical condition, visits were kept short at the hospital but time was spent catching up back at Ronnie McD's. What can we say about such a burst of personal attention when we needed it most? It means so much that neither miles nor time can prevent the good intentions of family.

Mike, Dana, & Grace spent the day at the Mall of America and Grace made it on the big ferris wheel for the first time. She also got a balloon and a special squishy yo-yo just like her Ronald McDonald friend Rowan who is from Egypt. Grace loved all the presents she got from her family members that she had never met and she even took the time to tell Mike and Dana a story using five flower erasers as pages. Apparently there was a little girl who wanted to go in the forest but had to watch out for a bad guy named "Rocky Knockdown". Mike said that it was very funny. She is so creative. She immediately used the art supplies to make some cards for her Illinois friends and cousins.

I am off to bed. Thanks again and again for your prayers - keep them coming!

-Margaret

Day +22

WBC 0.5

Today was a very slow, very uneventful day. And in his state, that is a very good thing.

Max remains on the vent with a few variations. His oxygen percentage is relatively low (38%) and his respiratory rate from the machine went from 18 to 16 per minute. They also changed his pain/sedation med from morphine to Dilaudin. This hopefully will make him less itchy. He was rubbing his hand over his nose and eyes as doses wore off. As they made the change, Max was really rubbing a lot, and his breathing rate went as high as 65 breaths per minute. Dr. Sweeney from ICU told me this was a good neurological sign because it showed Max still has a determination to breathe a lot on his own.

The plan is to move very slowly towards getting him off the vent. His x-rays continue to show clearer and clearer lungs. His blood gases are still showing the proper results for good oxygen and carbon dioxide. These numbers and the overall stability of his blood pressure are the best signs that he is improving. To look at him, however, it is hard to make that same impression. He is still so heavily sedated and his face is so squished together it looks like he could audition for Finding Nemo (or as we told Grace tonight, Finding Chemo).

As always, the fear is there. The reality of the horrors of what we're going through are all around us. But we must remember the little victories. I'll take Max's extra breaths, blown up through a tube, above and beyond a machine because he was listening to his Maisy video. And I'll take Grace leaning against Max's crib with me reading a farm book from start to finish. She knows he's "sleeping" but he can hear us. Again she decided to nap for Mom which is so necessary. Thank God we have Grace to help put Mom to sleep because she'd never do it on her own.

Every night before I go to bed here in the hospital I play "Feather by Feather" by (Smog) which is mostly about someone who's constantly beating himself up and losing his wings "feather by feather" but ends with the following words:

It's Ali vs. Clay,
Both pummeling away.
The champ always fights himself.
But you are a fighter.
You are a fighter.
You are a fighter

The kid's got heart.
The kid's got heart.
The kid's got heart.

Max's body might be fighting himself. But the kid's got heart. And I love him so much.

--mike

Day +21

WBC 0.4


Mike and I went to bed last night feeling okay with Max being on the vent. We know he needs the help and that he is resting now, and hopefully more able to fight his infection. However, we couldn't help but feel sad when we woke up this morning to the reality of Max's situation.

Max had no dirty diapers last night so the endoscopy was cancelled today. The thought of GVHD is still on the doctors' minds, but it is not a primary concern right now. The lung culture grew a bacteria commonly found in the mouth and Max is being treated for that. This bacteria is probably not the cause of everything. As I write this his oxygen level is at 40% and the vent is taking 18 breaths per minute for him. These numbers have been adjusted up and down a few times today. When Max shows improvement they are lowered. A few times tonight he sounded wheezy and his O2 had to be increased and he received his asthma medication.

Max is heavily sedated but they told us he can still hear and feel us. I wasn't convinced until I turned on his Baby Van Gogh movie and he opened his eyes ever so slightly. He also moved his hand away from mine and rubbed his eyes and nose a few times. The nurse just gave him some more sedation because he appeared to be getting a little annoyed.

His blood pressure has been stable all day and his kidneys are being watched closely. He received a fluid flush for his kidneys, but then he began to retain fluid and he puffed up a bit so they just gave him some lasix.

Dr. Grewal, Max's primary doctor, stopped by today to check on Max. If you recall, the BMT doctors rotate between the BMT unit, BMT clinic and research lab. Dr. Grewal had not seen Max for a while, but has been getting reports on him. He was sorry about Max's current situation, but is hopeful he can overcome this. He seemed a bit concerned about Max's graft, and really hopes his WBC starts to rise again.

Thank you SO MUCH for all of your prayers and support. It really, truly, lifts us up.

-Margaret

Day +20

WBC 0.3
Evening update

Max has been intubated and a ventilator is breathing for him. It's not an easy sight to see your son so sedated and breathing with the help of a machine. But it is for the best. The lead pulminologist and the ICU doctor both recommended getting a bronchoscopy of Max's lungs based on how he had been breathing and how his X-rays looked. As the bronchoscopy started they saw a fair amount of mucus and blood and it was clear that a full intubation (as opposed to a more benign LMA) would be necessary. The pulminologist does not feel that there is a bleed in the lung, he feels that what he is seeing is the effect of an infection. The good news is that this whole thing was done during daylight hours electively with the very best people involved and it was performed successfully.

We feel our son is more at peace now than in the last few days. While he is more sedated, and therefore even less of himself, he is not struggling to breathe and he is not as uncomfortable. Hopefully this time on the vent will be a bridge to help him cross these rough waters. He'll stay in this mode until some progress is seen in his sepsis and he begins to show more of an ability to breath on his own without difficulty.

Now a quick note about his kidneys since I just watched them insert a Foley catheter into his you-know-what (ouch!). The next drugs on the list for Max's mystery infection are very strong and can cause kidney damage. Dialysis is being talked about if necessary to help Max if these drugs are necessary. In addition, tomorrow he will get an endoscopy (camera up the rear) to try and get a good sample to test for gastrointestinal graft vs. host disease. Hopefully that turns up negative and some of the ongoing cultures begin to help the doctors learn more about what they are fighting.

Now for some quick thank yous:
1. To all people praying for us: Thank you so much. You may feel like it's the least you can do, but with all of you together, it's the most help we're receiving. Your good wishes, prayers, and notes to our guestbook are our lifeline these days.

2. To Grannie (Margaret's mom): Thank you for coming at the drop of a hat at this difficult time. You were able to take care of Grace when Margaret called me at 2am last night. Thanks to you we were able to be by our son's side together and Grace was in the very best of care as well.

3. To all the other Hurler families: Your support and your personal experiences of overcoming similar dark days is incredibly encouraging. Thank you so much.

4. To the doctors and nurses at the hospital (especially all the "one-to-one" nurses): Thank you for your diligence and your willingness to include us in every step of the way. We know we are getting the very best care and everyone is trying so hard to help our son.

Finally, to all of the people reading this who have children of their own - especially the first-time parents - please hug your kids. Please enjoy their youth. Please celebrate their innocence (even when they're guilty).

All the best,

mike

_______________________________________
Late Night/Early Morning Update

Max has run into trouble once again. He spiked a temp late Wed. night and sounded wheezy at his 12 am breathing treatment. I noticed that his heart and respiratory rates were up, and the nurse told me it was because of the fever. His blood pressure was much higher as well (a surprisingly fast change from yesterday if you ask me), and the nurse turned his dopamine off. He also developed a bumpy rash on his arms, possibly from the red blood cells he received.

I remarked to the nurse a few times that he was breathing hard. She suctioned his nose and throat to try to get him to cough and clear the "junk" sitting on his chest. She said if he still sounded the same she'd call RT (respiratory therapy) for an early breathing treatment. I kept watching his chest as he worked harder and harder to breath. The charge nurse came in and I told her, she said it looked like he was working too hard. The nurse called RT, who came right away. She heard fluid on his lungs, ordered a chest x- ray and called the ICU. She suctioned Max too but could not get him to cough enough, so she ordered a bi-pap machine to help him breathe.

The x-ray showed fluid on the lungs and a partially collapsed lobe. Max received many many fluids throughout the day, and no one ordered lasix for him to help him void the fluid. He got overloaded and it all went to his lungs. Right now he is sedated so he does not fight the machine. It is not a vent, but it does force air into the lungs and pushes the fluid out. He is also getting his breathing treatments every hour and vibrations on the collapsed lobe.

We are extremely nervous and scared. Both the attending doctor and resident changed over this week. While we know they are extremely capable, it makes us nervous to be in this situation with new staff. In addition, there was no ICU fellow or attending present at the hospital tonight. The BMT resident consulted with the ICU attending over the phone and they formulated the treatment plan.

It is heart breaking to see him hooked up to this machine. The doctor thinks he will be better by mid-day and we hope he is correct. He told us the lasix was not given because his pressure was down (lasix lowers blood pressure). However, he was getting the lasix prior to today precisely so he did not run into this problem. We are very upset this happened.

Mike and I are here together. I called him at 2 AM when the RT came to the room. We were feeling so encouraged by the progress Max made during the day only to have this happen a few hours later.

Please pray the fluid away from his lungs, and the infection out of his system!