Going Home

It will be an even 5 weeks. We're going home tomorrow- Monday July 20th. That's 35 days and 34 nights down here.
Max will still have his share of upheaval and uncomfort- but at least we'll have it at home.
I hope to continue to post things but it may not interest many of you any more. I was wanting to do another movie with Max, but it looks like that won't happen down here today.
Thanks to everyone for their help, their prayers, their time and their love for our family.
We will never forget any of it. I will never forget.

First Movie

This has been something that I have been wanting to do with Max for a while- then especially during our hospital stay.

Of course the quality is low, and the final movie is near totally pointless, but that was the fun of it. I tried to talk him into making a movie with the 'guys' playing a football play. But he was having none of that. Here it is. I really like the credits and just watching Max watch himself in the webcam, more than the movie itself.

setting a go home date

Dr Horne says everything is going great. Max needs to start moving around and eating. His oxygen is great. She thinks that we could be going home as early as thursday or Friday- as late as Monday or Tuesday.
Kevin Haycraft has brought his tractor over to level out the yard for Max's arrival home. There is a small army of helpers. Jenni Fawcettt and the boys (Zac and Chris), Dillon Potter and his mom Stevie, Tyler Furness and Super Dave, Gage and Middleton are there.
Pretty cool.
I may have them dig me a pool while they are there. At least a small football shaped jacuzi.

come home prep

well, we really still don't know when exactly we'll be coming home, but they've started talking to us about discharge. leaving the hospital kind of discharge. It may be a week, it may be two weeks, but it's in the conversation- and that's nice.
Sunday they'll do a Gaft analysis to see how many of Sammy's cells are in there. If his white cells are half as intrusive as that child is- then we're golden.
So Discharge Stuf:
Max will have to wear a mask whenever he goes outside for the next 6 months or more. We have to steam clean our carpets, and any place he would want to go would have to have just steam cleaned their carpets. Limits the choices.
No swimming for 6 months to a year.
Also, dust is bad for him- real bad. And if you've seen our "yard" you would see the problem at hand. It's all dirt. We've been working this summer to pull up all the weeds in order to seed, but now we have to go sod. I think we'll throw gravel down on the side of the house to keep the dust down. We'll see, and we'll figure it out.
Right now it's 11:52 PM. Max just got up feeling bad, and we rushed to the bathroom. His blood pressure is good and he has no fever right now, and we'll try to tuck back to sleep.
I think he'll be feeling better tomorrow. One nurse said she often notices an every other day pattern with BMT kids in the recovery process.
Still, I'm happy to be dealing with all these issues. It's really a good thing.

Did Someone say Discharge?

So not to get to far ahead of ourselves, nor overly excited, but the staff here at ucsf have started broaching the "D" word with us- yes that's right: Discharge. Details about going home. When we might (they think in 2 weeks) what we need to take care of at home (long list I'll cover soon) and all the goodies that go along.
Max is soooo much better this time compared to the last time I came down. His ANC has been up above 500 for 4 days now. This means that mom and dad can eat and drink in his room. He also can walk around the outside hallways if he wants.
He's still dealing with oxygen saturation level issues- pretty much he needs to wear the ox-tube when he sleeps. There are a team of specialists to discuss and pontificate on this, as well as an x-ray and a CAT scan taken of his lungs. The preliminary feedback I got from our night nurse last night (of course nothing from the specialists- they too busy being special together) is that there is a little something in his lower left lung. Probably from so much innactivity- but maybe pnemonia. Not too much to worry about.
We've also been visited by the Infectious disease team. Max has had a nagging, reoccuring fever. Nothing too bad, but the team wants to figure out why it's hanging around. So they'll start trying to eliminate possibilities.
Overall Max is feeling great. He's sleeping right now (9:10 AM Saturday morning). He got up and walked around the room a bunch. Had his playful goofball personality back. Did have a couple of nasty bloody throwups yesterday, but they resulted from him trying to shimmy from bed to gurney, then gurney to cat-scan.

tuesday goings on

While Max is doing better- and he is- there were still some real tough times for him and mom tuesday. He had a free flowing bloody nose for over an hour. Jamie had to try to keep pressure on the nose, while also keeping his oxygen tube in. Max was also throwing up blood, and some bloody tissue yesterday. The docs say this is ok. They compare it to when you have an "owie" and it scabs, then as the wound starts to heal the scab falls off. Well Max's mucusitis cause a whole bunch of wounds in his mouth, throat and stomach (maybe all the way through the other end). The bloody tissue is the scabs sloughing off.
So far today he's been doing well. He had some fever last night, but only 101.2. They have continued to reduce his morphine amounts, and he has not been feeling greater pain- so that is good. They are also reducing the oxygen levels in his tube as they try to ween him off that. He needed it because all the sores in his throat made it difficult for him to get the proper level of oxygen saturation.
I think that's it for now.
On the football front we participated in a passing league contest at Del Oro Monday. While we didn't win any of the 3 contests we gained a bunch from the wxperience. We're going against big high schools and the boys began to settle down as they realized that the other kids were just high schoolers like them. We'll be better next time. Unfortunately Christian Addington, who was tearing it up at WR, broke his collarbone when a Lincoln player tackled him to the ground after a catch. Not supposed to be any contact in these things, so that was deffinately a bummer. He should be back in time for the season.

video of Max

Here is a video of Max from Tuesday. Jamie is with him in the hospital so I can attend football practice (thank you fantastic football coach wife!!)

It's hard to hear Max, but that is because it's hard for him to talk loud enough to hear even when you are right next to him. He has been doing better. They are cutting back on his morphine, and he went almost 2 days without a fever. The fever is back today, but he is still making strides of improvement.

Here is the video:

my roomate- the rattlecan

Max is actually doing better today. The biggest issue is just the rattling that is going on as he breathes. But the docs and nurses have x-rayed him and his chest looks fine. He's doing better. Nothing to get real excited about. Just that the fevers are not as high, and the blood pressure has not really been an issue today, and only one throw up verse multiples. But still- better. Fever never got over about 102 last night and it's been regularly going to 104 every night. He's still sleeping most of the day, and shaking real bad when he stands to go p, but we have a target of when we think he'll start healing these sores.
The doctor says probably around the 13th, 14th and 15th is when they expect to see Sam's white cells coming in and starting to heal him up. Maybe even a few days sooner than that if they cut out his Day 11 Methotrexate (they are leaning toawrds cutting that out).
Football has our first passing league summer contest this monday at Del Oro (5:00- 7:00). We'll be going against Davis HS, El Camino HS, and Lincoln HS. We're looking forward to the experience. I predict we'll be shaky at first, but then settle in and hold our own. Our kids need to see that all these other mythical schools around us are filled with normal high school kids- just like them- we'll just not nearly as blessed since they don't live in Foresthill!

Fireworks

The Fog stayed away this evening (which is actually a pretty big deal) and we had a clear view to a couple of firewors shows. We had a decent view (granted from afar) of a show that looked like it was going on down past the Mission district maybe. Real Nice. Then we also had a view of a show going on over in Marin (even further away).
The PCA (Dave) helped us get the bed turned around so we could better enjoy the show.
Max was a bit disappointed. I think he was expecting them to come all around the building. That would have been cool.
He's also fighting the exhaustion from being so run down and feeling so cruddy. He just did not have enough energy to really have the right amount of patience. But we did have fireworks. And we did enjoy it- I know daddy did.

a Sobering Clip

While evryone asks how Max is, and we usually say things like "oh, he's doing OK" or "he's hanging in there".
The truth can be that he is pretty miserable. It's just tough to say that.
Here is a clip of him sleeping. I think that you can hear the gurgle and rattle of his breathing. The doctor said that he has the worse case of mucusitis that he has seen in a long, long time. he expects it to be another 8-10 days before Max will start feeling any better.

morning of the 4th

It's the morning of the 4th, and I'm back at the hospital. While I was back in Foresthill the changes that Max went through were very tough for me to swallow. He is really feeling crappy. He has blisters that have popped up on his arm. He wears an oxygen tube to help keep his oxygen saturation levels where they need to be. His breathing is all rattly, as the mucusitis has ravaged him with sores thoughout his mouth and down into his tummy.

He goes up and down. He'll be in great pain, then be knocked out with the morphine, then be awake, aware and showing his Max personality. But that does not last long. Maybe 10- 15 minutes. Then the chills start coming back. The pain starts coming back and he'll need to lay down again.

His fever has reached almost 104 the past few nights. Last night they did an x-ray on his chest because they were concerned about his breathing, but everything looked fine. He just has a lot of crap in there from the mucusitis. The picture shows the collection jug of phlegmy garbage that Max suctions out of his mouth. This is from 1 day.

He's excited about the fireworks and I'm keeping my fingers crossed that we get some clear looks. The view should br great as long as we're not fogged in.