Max's Journey

Saying Goodbye to Children's Hospital

2008-10-03T12:00:00.000-07:00

I was actually a bit sad to leave today. It was hard to be too sentimental about it as I was carrying a screaming child out. Max had his dialysis line removed this morning! Praise Jesus!!!

We were received on time, and all went well in that department. That is to say, that everyone seemed to expect us, and we were on the schedule after all. By the time we got back to the pre-op waiting area, Max was beginning to show his signs of anxiety. As I carried him into the OR room, and laid him on the table, he was in full on anxiety attack. The doctors got him under anesthesia, and I left. He was brought back to us within about 30 minutes, but he was not fully awake. He was screaming, loudly. He was not consoled very easily, and then when I finally did get him settled, the nurse came to remove the IV line, and that was the end of his calm. The doctors and the nurses agreed that much of his screaming was in regard to his dislike of the hospital setting, and they agreed that we should just go home as quickly as possible. The nurse ran down the discharge orders, as sent us out with him still screaming.

So, as I walked out the door of Children's Hospital for what will likely be the last time in 2008, I was hurried, but still a bit sad.

Sad because I know that every child in there has a story, and every parent is hurting! We are lucky. We get to take a fully healthy child home. Not all parents there will ever get to do that.

I will be forever grateful to the countless Doctors and Nurses who helped Max recover! The care we received at Children's was outstanding!

I am continually blown away by the outpouring of love and support we have received from people all over the world. To the people of CTK, Thank you! Thank you for your prayers, your food, your gas cards, and your encouragement.

Max will have a check up in 3 months, and really all that is left for him is to continue to heal, and to get off the blood pressure meds.

Thanks Again!
Shannon

The Middlebrook Way

2008-10-02T23:06:00.001-07:00

Many will laugh when they read this, but it is true none-the-less.

I never received the call from the surgery scheduler to confirm the surgery, and to give me the details, from the hospital that I was supposed to receive today. I called around 6, and the nurse said that she didn't deal with that portion of his care, but that the surgery schedulers often work in the evenings. So, around 9pm I decided it was time to call in again. The front desk was able to page the anesthesiologist for me. They called right back, only to tell me that Max wasn't on the schedule to receive anesthesia for tomorrow. The very nice man said he'd call the surgery team and see if they had it on their schedule and it somehow didn't get onto the anesthesiologist schedule. Children's hospital also received a brand new computer system yesterday...So, there may be a breakdown because of that...

He called back to say that the surgery team could not access the file from home and that he suggested that we just bring Max in. He let us know that anesthesia has room on their schedule for him, so even if he is not on the surgery schedule, the can often work him in.

I can only laugh! It seems that this sort of chaos follows my family. I have found that laughter is the best way to deal with it...

Pray for us tomorrow. Max will not be able to eat while waiting for his procedure. We were told that it would be at 9am, but now I am not sure. Pray that we are able to get him in quickly and that we have a smooth day tomorrow!

Pray also for Baby Drew. He was moved back into the ICU today. I saw him, he looks great. His oxygen levels were just not where they needed to be.

Thanks,
Shannon

The Beginning of the End...

2008-10-02T21:30:00.000-07:00

Today, Shannon and I took Max to Seattle Children's to get a blook work-up and to visit with his new "outpatient" nephrology team... and they gave us GREAT NEWS! Tomorrow morning, we will be taking Max back to the hospital for a surgical procedure to remove the catheter line that was installed for dialysis.

We are so thankful for this chapter of Max's journey to come to an end!

Once he recovers from surgery, we will be able to take him hom and give him his first real bath in a month!

We will be continuing to monitor his high blood pressure, which is to be expected for the ned six months, according to his doctor.

We are so thankful that he is finally reaching the last portions of this journey, and we're thankful for your support and prayers.

Sam

Another Step in the Right Direction!

2008-09-30T09:02:00.000-07:00

Max's blood test yesterday was rough! When we are in Seattle at Children's, they draw his blood through his catheter. Here in Bellingham they have to poke him. The catheter is considered to be his life line. It allows the dialysis to happen, and it is a line straight to his heart. For this reason, it cannot be touched except by the trained Dialysis Nurses. So, we went to the local Lab to get his blood drawn. Let me say first that the Nurse who drew Max's blood was amazing! She was able to get blood on the first try without any help from Max. He started screaming when we got into the room, and he screamed loud. He scratched the nurse that came into help hold him down with me until he drew blood. The ironic part is that he later confided to a dear friend of the family that it only hurt a little bit. The anticipation must have been way worse!

Anyway, after all that, the blood tests were on the fence. They were not quite as great as the doctors had hoped for, but they weren't clearly bad enough to warrant Dialysis. The doctors called and asked me more questions. His blood pressure is the biggest topic of discussion lately. It also is higher than they'd like even with all the high blood pressure meds he is on. One of the things that has made this journey so interesting, is that there is not a clear line in the sand that determines when Max needs Dialysis or where we are in the progression of recovery. All of the numbers factor into the equation along with his overall feeling and his appetite. The doctors rely on Sam and me to add vital input into the treatment plan.

In the end, they decided that he did not need Dialysis!!! What a relief! So, Thursday we will go down for our first "Follow Up" visit, and we'll find out when he can get his line removed.

This has been a crazy journey...But I truly believe that God teaches us more in the hard parts of our journey, than we could ever learn in easy.

Thanks,
Shannon

A Sight for Sore Eyes

2008-09-28T08:36:00.001-07:00

Yesterday, I saw something that made my heart leap and my eyes mist up a little. It was the sight of both of our sons on a swing set at Cornwall Park here in Bellingham. They were laughing their heads off together and playing a game that involved yelling and then laughing at the same time.

Levi was his usual self, sprinting from one activity to the next on the playground. Max was a little more reserved, walking instead of running, but the point is, they were both out there having a lot of fun.

It's funny, now that Max is feeling better, I think Shannon and I are both realizing what we've been through. Having reached a point now that we're not needing adrenaline to function, the scope of the ups and downs over the last month are starting to sink in.

With the most threatening parts of Max's illness now behind us, there are a few things that I can say with clarity and confidence:

1. God is abundantly good, and His grace and mercy toward us are overwhelming.

2. The people that work at Seattle Children's Hospital are heroic champions that have earned my love, respect, and gratitude.

3. I've learned all over again what an amazing mother my wife is. I'm hopelessly in love with her as my wife, but I fell in love all over again with her as I observed her shifting into a higher gear that I've rarely seen - it's the "momma gear" that allows her to focus on nothing but her sick child regardless of stress, sleeplessness, hunger, or anything else. I am married to an amazing woman who is also an amazing mom.

4. I love my church. They have surrounded us, supported us, and loved us in a time of great stress. People have called, emailed, sent get-well cards, balloons and food. They drove to Seattle to see Max, they mowed our lawn, cleaned out house, washed and vacuumed our van, delivered dinners, and so much more. Christ the King Church, I am so glad that I am a part of this family!

5. The internet can be a great thing. To have people visit this blog from all over the world and daily check in on Max, a kid they might never meet - it's been overwhelming.

At any rate, we will keep you all posted on the happenings of this week, and we continue to ask for your prayers as see this thing through to the end.

Thanks,
Sam

One Step Closer

2008-09-27T11:29:00.000-07:00

Yesterday, Max and I drove down to Seattle for Dialysis. The doctors believe that may have been his last Dialysis!!! Monday morning we have to get his blood drawn to check his kidney function. They are letting us do that here, in Bellingham, since they believe that the results will show that he doesn't need any more treatments. If he does need one more Dialysis treatment, we will go down and do that, but the fact that the doctors are letting us get the blood draw in Bellingham says a lot!

Max has an appointment on Thursday in Seattle with his Nephrologist (kidney doctor) I am told that at that appointment we will discuss his follow up plan including when they will remove his catheter. He will have it removed in Seattle as they will have to put him under general anesthesia to remove the line.

This whole illness has a very surreal feeling to me. At times I cannot believe what we have gone through, and at others, it feels like since we have been at home, nothing has changed. Now that the worst is over, my emotions have begun to jump wildly about. One moment I am in shock, the next I am asking God why I am blessed enough to have been born here in America where my kids can get this wonderful health care and live, and another child in another country would have died.

Please pray that Mondays blood test confirm the doctors belief that Max doesn't need anymore Dialysis!!! Please pray that God is glorified in all that we have been through.

Thanks,
Shannon

The Light at the End of the Tunnel

2008-09-25T08:39:00.000-07:00

Yesterday Max's blood test confirmed that his recovery is speeding up!

Sam and I had noticed that he seemed to be feeling better every day. And, his urine was increasing also. The blood test showed that not only is he urinating at nearly 100%, but that the Kidney's are producing urine that is beginning to clear the waste products out of his blood.

This has been a roller coaster of a ride for us. Just Monday, we were told that he'd likely need 2-3 weeks more of Dialysis, and then Wednesday the doctor says we will be dereasing his time on the dialysis machine for Friday, skipping Saturday and Sunday, and rechecking Monday before we start Dialysis!!! This is incredible news. It seems we are now counting down our last few Dialysis treatments!

I am still struggling a bit with Max's new "hospital attitude." He still belives he can yell at me and demand that I do things for him. I have been as kind and as firm as I can be, but at times it is very wearing. Levi and Max also seem to be able to irritate each other much more easily. Let me just say, our house has more whinny noise in it that we have every had.

We will have more information after the blood tests come back Friday. Thank you so very much for all your prayers...we can see the fruit!

Shannon

Bellingham At Last!

2008-09-23T19:02:00.000-07:00

Max came home for the first time late Monday night. He was so very excited to be home!!!

Today (Tuesday) has been a day at home. We haven't done much of anything except try to settle and rest. Sam and I had a lot of unpacking to do. Max was admitted to the hospital on Tuesday the 2nd. Our family had gone "camping" at my parents lot that weekend, and the boys and I had just returned late on the 1st. Then, after being at St Joe's in Bellingham for 4 days, we were transferred to Children's in Seattle. We were there for 14 days, and then at my Mom's house in Everett for 5 more days. All that to say, we had been living out of suitcases for far too long. It took us most of the day to uncover our living room.

As I sit here and type, there are still a couple of bags to unpack that sit on the kitchen table...they may be there a few days :)

Max has Dialysis again tomorrow. We are planning to ride down with another Mom and Son that live in Birch Bay. They have been commuting three times a week for quite a while. The son's name is Caleb, the mother Jamie. Pray that this is a good fit for all of us, as we'll be in the car together for 1.5-2 hours each way.

Levi had his first day of School on Monday. I was able to take him, and we had a great time. He is attending the MP3 school here, which is a home school co-op that is hosting my the Meridian School District. Sam will be taking him tomorrow. Pray that he continues to settle and enjoy it.

Max's Doctor's continue to tell us that he will recover and that he'll have very few lasting effects from this illness. But, that being said, he is on a slower recovery path than some of the other children with this illness. Pray that his Kidneys heal, and heal to 100%. Pray that his blood pressure returns to normal, and that he never struggles with high blood pressure again (this "could" be an issue for him in the future)

One of the amazing things that we have been able to see through this is the greatness of God in the midst of our struggle. Sam's parents had a vacation home in the Galveston area that was damaged during this last hurricane. My in-laws have expressed the insignificance of this loss in light of Max's illness. I have friends whose children are praying like they have never prayed before. I am blessed to know that God brings good out of every situation. I pray that our awareness of the goodness of God increases beyond measure, and that from this struggle, God is Glorified.

Thanks,
Shannon

Day 20 - Life Continues and Max is Improving

2008-09-22T09:21:00.001-07:00

As I write this is, I am in Everett, WA, at Max's Grandma's house. He and I are spending the morning here before going to Seattle Children's for his dialysis treatment.

Shannon and Levi are up in Bellingham as Levi starts school today.

Max is still improving at a slow but steady rate. His urine volume is increasing at a steady pace, and we are hopeful to see this continue! He will continue to come back to Seattle Children's on Mondays, Wednesdays, Fridays, and Saturdays (if needed) until everything is back to a normal level.

This morning has been a sluggish one. Unlike the last few mornings, he has risen without a lot of energy and all he wants to do is hang out on the couch.

On behalf of my family, I want to say thanks to everyone who is continuing to pray, to send cards, to show support, etc... it means the WORLD to us.

Sam

At Grandma's House

2008-09-20T19:15:00.000-07:00

Max was released from the hospital late on Thursday. We didn't get to my Mom's house until after 9. But we made it!

Friday was a great day. We spent the morning together as a family, and then Levi and I ran errands together while Daddy and Max curled up on the sofa for a movie. In the evening Levi and Sam left for some Father-Son time, and Max decided that Grandma, he, and I should make a raspberry pie with the raspberries that are growing in Grandma's backyard. He convinced us that this was a good plan! Then he picked the berries, washed the berries, helped with the crust, the mixing of the berries and the topping. He then waited on the sofa for it to bake. It was the most energy I have seen out of him since this started. He was ready for bed as soon as the pie made it into the oven, but he had made that pie.

When we got up this morning, we discovered that Max's pullup was significantly wet. We took it with us to the hospital today to measure it. It was 240 cc!!! That is double his urine output from Thursday.

And then tonight, after dialysis, which typically removes a lot of the body's fluid and decreases the urine for that day, he needed to pee for the first time!! This is really good stuff. The doctors want his pee to double everyday until it matches his intake of fluid. They will begin to talk about when to end dialysis after he has reached 1000 cc consistantly, with urine that is clearing his blood of the toxins. We are making progress in this direction!

It will take over a month for his red blood cells to be back in the normal ranges, so his tiredness will continue for a long time. But, his bursts of energy are fun, and encouraging.

Thanks for all your prayers, they give his so much encouragement!
Shannon

The Waiting

2008-09-18T17:25:00.000-07:00

Max was scheduled for Dialysis this morning and then for surgery at noon. We got the Dialysis done, and were in his room waiting for the doctors to call for us...We waited, and waited and waited, finally at 4 they called for us. He was asking for food a lot since he was not allowed to eat anything today. So sad.

Now Sam and I are in his room, waiting for the doctors to call and tell us he is on his way back to our room. They have not called yet! So we wait!

I am happy to go home, and I feel good about the job of caring for Max without the nurses. What makes me nervous is that I will be taking on a lot more work when we get home. Since we have been at the hospital, my Mom, and Sam's mom have been a lot of help. Mollie flew up from Texas and stayed for the first week. She helped a ton with Levi, she helped with laundry, cooking, shopping and running errands. Sam and I have been taking turns staying at the hospital, with the off night being at my Mom's house in Everett. (that is also where Levi has been staying) She has been doing all of the cleaning, laundry, shopping and lots of caring for Levi while we are here. (Thank you Jesus for such wonderful Mom's!!!) So now, with us leaving for home, I am nervous about all the work we will have to take back on along with the full time care of our two precious boys.

Pray that we are able to give each of the boys what they need, and take care of ourselves. Pray that Max's kidneys recover 100% and quickly. Pray for wisdom in knowing what to say no too, and the Strength to allow people to help.

Thank you!
Shannon

The Next Steps

2008-09-17T22:46:00.001-07:00

Thanks to everyone who has been with us so far on this journey! The truth is this though - we still have the longest part of the journey yet to go.

Tomorrow, Max will undergo surgery in the General OR so that his dialysis line can be moved to a newer, safer location. It will be less likely to get infected, and because of that, we are being allowed to not stay here. Max will still be on dialysis on an every-other-day basis, and so we'll be doing a lot of back-and-forth with him.

For those of you around the world that have been praying for us, please know that us leaving the hospital is not the time to stop praying - in fact, it is the time for all of us to pray harder.

Specifically, please pray for the following...

1. Max has yet to produce any significant urine, which means that his kidneys are still not working.

2. Max is still swelling up from excess fluid not leaving the body, and we need that to stop.

3. As we look at leaving the hospital, we also look at taking all of his care into our own hands. While we're thankful for the opportunity, the stress level will likely rise. Pray for wisdom, confidence, and peace.

We appreciate all of your support, prayers, and help.

Thanks, everyone.

Sam

BIG news!

2008-09-17T07:11:00.000-07:00

We were called last night by the fellow of nephrology fellow, and she said, "How would you feel about leaving the hospital?"

She said that they wanted to to a quick surgical procedure to move his dialysis port to a new location on his body (high in his chest, as currently it is in his upper thigh), and this procedure would allow him to be at such a high risk of infection. With the risk of infection dramatically decreased, and with his numbers still moving in the right direction, she said that it would fine to leave the hospital!!!

So, the procedure will happen tomorrow - the whole thing take about 25 minutes or so - and once Max has recovered from the anesthesia, and ready for it, they might try to do dialysis through the new port, and once that is all done, we would be free to go!

Per the doctors request (and our comfort level), we will hopefully spend tomorrow night at our in-laws home in Everett, and if all goes well we will head HOME to Bellingham. We will still be traveling back and forth to Children's every other day so that Max can receive dialysis treatment, but what a blessing it will be for our family to be in our house!

We continue to pray for Baby Drew - please take a moment to leave the Jackson family a note to let them know that we are cheering them on... You can do that by clicking on BABY DREW'S JOURNEY... Just tell 'em Max sent ya!

Thanks for your support and continued prayers!

****edit, 9:29am****

When I went back and read through what I wrote, I realized that I painted a pretty optimistic picture of where Max is at. The good news is that he is going to be released! The release, though, does not mean that fully recovered by any means. He still can't walk more than a short distance without being winded and tired. He's still swollen and has a yellowish tint about him. Though we won't be in the hospital, Max will still be needing our full attention for a while. We're thankful that were leaving the hospital soon, and we're looking ahead to the next phase of his recovery, and we appreciate your thoughts and prayers as look forward to the day down the road when he is completely healed!

Grumpy!

2008-09-16T13:12:00.000-07:00

Yesterday Max did not have dialysis. And, he was granted a pass to go to Red Robin for dinner to celebrate my Mom's birthday! He was the surprise!!! He had fun, but he tuckers out really quick.

This morning he had dialysis and is resting in preparation for some friends that are coming to visit. He is excited to see them, I just hope that he isn't to grumpy.

My biggest challenge is walking the fine line between understanding that his grumpiness is from feeling crummy, and allowing him to be disrespectful. He is flat out refusing to say Please or Thank you most of the time, and that is not allowed. So, we are seeing some of his true stuborness come out! All of the hospital staff say this is a normal part of the progress, and that I will at some point have to deal with it head on. They are leaving the timing of that up to me. Pray for me that I can be loving and compassionate as I am reminding him that he must be respectful.

Thanks for all your prayers, they continue to be a big source of encouragement!

Shannon

More Good News

2008-09-15T14:47:00.001-07:00

Max has been given permission to not have dialysis treament today, and this is very good news - they will be doing it again tomorrow, and will be doing mroe down the road, for sure. Today, though, has been a great day! Max got to put on real clothes and his shoes and walk down to a "safe zone" - a special place for kids where doctors and nurses are not allowed. He played some pool, did a few paintings, and had a lot of fun.

Please continue to pray for his recovery!

Shannon and I have met a wonderful family here at Children's, the Jackson's. They are from Montana, and are here for their son, Drew. They have ties to my dad's hometown of Anson, Texas, and we wound having a lot in common, most importantly, relationship with Christ.

They are loving their son through some difficult times, and since they are from out-of-state, I'm sure they will take all of the encouragement they can get. If you wouldn't mind, please take a moment to visit Drew's blog and leave them an encouraging note... I'm sure they'd love to know that people from all over are thinking of them and praying for them.

Tell them that Max sent ya!

http://babydrewsjourney.blogspot.com/

Thanks!

Hungry, Hungry, Hungry.

2008-09-14T20:28:00.000-07:00

Well, if eating counts for anything (Which it does count for a small amount I think) then Max will be home in record time. He is always hungry and will eat anything we give him! Even now as I am typing (past his bedtime) he is begging for food!

My best news of the day (even better than the urine I think) was the news that we got our second negative E Coli stool sample. He is out of isolation now!!! Until now, he has had to stay in the room all the time. I was able to take him outside, but only if I promised not to let him touch the elevators or anything else on the way, and to keep him in the wagon! He has now been released from Isolation and is allowed to play outside with all the toys and go into the child life playroom tomorrow when it opens. This should make our days pass much better!!

Shannon

Urine!!!

2008-09-14T10:15:00.000-07:00

Max doesn't really understand my enthusiasm over urine!!! He has been potty trained for a couple of years and doesn't seem to think that peeing needs to be celebrated, but right now, I DO!!! That pee has been prayed for around the world! Thank you!!!

The doctors talked about skipping dialysis today, be decided he really did still need it everyday. Maybe if he continues to pee all day, he will be able to skip tomorrow...I am so glad that we are on the way up!

Shannon

The tide has turned!

2008-09-13T14:32:00.000-07:00

Today's blood counts confirm what we have been expecting. Max's Platelet count has begun to increase!!! We are now on the uphill climb back to health! Thank you Jesus! This is the first sign that the Kidneys are begin to heal. The next sign will be urine. (he hasn't had any in over a week)

He appetite seams to please the doctors, and his mood is good for longer and longer stretches each day. (he still tells everyone to stop looking at him and to stop taking at least once a day) He is talking a lot about going home, and he is really pleased with himself that he can walk again (the catheter in his groin was too tender to walk until now)

His blood preasure is down, it is truely in the normal range for the first time since this whole thing started. He hasn't had blood pressure medicine in almost 48 hours.

All signs point up!!! We will still be in the hospital for awhile. The doctors are still saying that two weeks is shooting for the moon, it will likely be three to four weeks, with a possibility of longer. But, we are on the way up!!!

Levi is doing well. He has been much more himself ever since Max has been able to sit up in bed and talk more. We did have our Child Life Specialist come in and she gave both boys a really neat bag full of real medical supplies. She has also given me a lot of tips on how to talk to Levi and what he needs to hear. Sam and I have both made huge efforts to spend quality and quantity time with Levi, and he is doing well!!!

Thank you so very much for all your prayers and comments. They have been a huge source of encouragement to all of us!

Shannon Middlebrook

The Cops Came!

2008-09-12T12:34:00.000-07:00

Many, many thanks to Mark in Louisville, Kentucky. Mark is a detective on the police force there, and though he and I have never met, we have a common love for acoustic guitars, and are members of the Acoustic Guitar Forum.

Mark contacted me and asked me if it would be okay if he arranged for a visit from a few police officers - and boy, did he come through in style - the Assistant Chief!

The assistant chief and another officer from the University of Washington Police Department came and brought Max all kinds of gifts and things to play with. He even got his own badge and official police patch!

After a what I can only describe as a tortuous time of bandage removal from his dialysis tubing, this was JUST what he needed to cheer him up.

Here is the happy group - look at that big smile on Max's face!

On another note, Max's numbers took a slight turn for the better today - please pray that this would be a trend!

Thanks, Mark, for making this happen, and thanks to the UWPD for taking the time to make my kid's day!

A good day

2008-09-11T22:11:00.000-07:00

Max had a good day today. Although his numbers on his blood work were still low, there were some glimpses of "our Max" today that shown through brilliantly. The highlight of his day was a wagon ride out to the park (the park is a part of the hospital).

The best news for us as parents was watching him EAT - he had two bowls of strawberries, and few other small things today.

Continue to pray for his numbers to go back up!

September 11, 2008 - Ups and Downs

2008-09-11T08:18:00.000-07:00

To start, on this September 11th, I take a moment to reflect on the victims of the attacks on 9/11, and gratefully remember the brave actions of firefighters, police, EMT's, other public workers, and even clergy that ran TOWARD the destruction to do what only a brave few can.

On this Thursday morning, I'm happy to report to you that even though Max's medical numbers are still down, his spirits are up. He's making funny faces, and he even told me a joke this morning. We've been sitting here in his sunny hospital room talking all about animals and zoos this morning, which is a good sign.

Yesterday, to give my other son Levi some specific attention, we were blessed with amazing tickets to the Seattle Mariners. It was much needed afternoon away for some good dad-son time.

Max is starting to act like Max, at least in spurts, but we still need his body to get better!

Please continue to pray for his recovery.

Thanks, everyone!
Sam Middlebrook

The First Wagon Ride

2008-09-10T15:41:00.000-07:00

Well, Max had Dialysis this morning. We gave him a small dose of sedative before we took him down, and that seemed to ease the hook up very much. He did a great job with the whole process and was even making jokes and faces for Dad at the end.

The Bad news is..The blood test show that the kidneys are still in real bad shape. The blood count numbers are dropping every day, and the kidney numbers are still rising (those need to switch directions!) The doctors still say that we have not yet reached the bottom of this HUS. I noticed today that his eyes are more yellow again. (Jaundice which could mean that his liver is still struggling. Something we have been watching) I asked the Dialysis nurse why his dialysis doesn't seem to be working as well, and she replied that it was because he was still getting sicker.

On the good side, Max and Levi had a few moments of playtime today. It was the first time they have had play interaction since Max got sick. Max got a sponge bath (always makes me feel better to be clean). And the best part of all...We went for a wagon ride. The hospital has these great big red wagons and I fixed it all up with pillows and blankets and he nearly climbed out of the bed himself to get in it! I pulled the wagon out to the playground and we looked around, then around through the gardens that they have here, and then to another part of the hospital to a fountain.

When we got back to the room, Max was asleep in under 3 minutes!

I only thought to grab the camera for pictures after we were outside. I'll try to remember to bring it with us for our next wagon ride so you can all see!

Thanks,
Shannon

The Ups and the Downs...

2008-09-09T21:39:00.000-07:00

So, Thanks so much for all the extra prayers this morning, we really had a rough go of it.

Max's mood did not improve much after the dialysis was over. He really was irritable for the majority of the day. Then, around 4, while the IV nurses were redoing the tape on his IV he hit another low point. We had to sedate him again. The meds could not kick in fast enough! (My mother-in-law Mollie and I wanted to have some too!)

After that dose, two of his dear friends, Domonique and Angel came to visit. They saw nothing of the crankiness I had witnessed all day, they only got the happy, sweet Max I knew was in there somewhere. He decided to work on the painting that he had started with his child life specialist, and then even to do another painting. He ate 2 strawberries and 2 grapes, the first he's had in a week (Thanks to an edible arrangement sent from cousins in Texas) and drank more in that two hours than he had in the rest of the day all together. (He still only finished the day with around 11oz of oral fluids)

My favorite moment of the day (other than the eating and the painting which were very happy moments!) was when the nurse came in with his Blood pressure meds which is supposed to take orally. He was tired and trying to go to sleep. I explained that he needed to take these meds first and he said "just tell them to put it in that flat thing that goes into my blood"! He was talking about his IV! I could hardly contain myself. The nurses even laughed. His mind is still sharp!

It is amazing that such a hard day overall has such good memories! THANK YOU JESUS!

Shannon

Tough Morning...Please Pray

2008-09-09T10:37:00.001-07:00

Max has a lot of anxiety about the processes of being hooked up to the dialysis machine. The catheter that they use for Dialysis is in his groin, and because it is new and because his blood platelets and red blood cells are low, it is not healing and is painful. The nurses are great, and they do their best not to tug at all, but Max gets really nervous that it is going to hurt.

Today was the hardest day yet getting him hooked up to Dialysis. He cried a lot, I cried a little and then we had to sedate him to get it done. I am sitting next to his bed while he sleeps through his dialysis...Pray!!!

Pray that his anxiety is reduced. Pray that his incision heals. Pray that his red blood cells multiply and his platelets increase exponentially.

Thanks so much for your responses, they really do mean a lot to all of us!

Shannon

Tuesday, September 9, 2008 - THANKS

2008-09-09T07:15:00.000-07:00

I just wanted to say thanks to three very special groups of people that have helped to flood this blog with messages and help us fill our son Max with hope.

First, to people at my home church - Christ the King Community Church in Bellingham, Washington. Thanks for being family.

Secondly, to my "second" church family, the people of DevelopingWorship. Through our forum in the past nine months, you've become family, and I look forward to what lies ahead for us as we look to seeing version 2.0 coming this month (yes, it's still coming).

Lastly but not least, thanks to the great folks at the Acoustic Guitar Forum. It's an online place for guitar geeks like me to hang out and talk about such things as tuner ratio's, tonewoods, and all the other stuff that guitar players like to talk about. You have been a part of my life for about seven years, and I appreciate times like these when guitars take a backseat to the real things of life.

Though there are many other groups of people that are contributing to this blog, I wanted to specifically thank these three groups. To the rest of you from the Porch, from various churches throughout the US (and abroad), and to those of you who are hearing about this through email and are joining in - thank you.

Today - Max is well enough to have a little attitude... If you're a parent, then you know what I mean when I say that it's nice to see a little slice of his normal morning grumpiness...

Thanks, everyone - please keep it up.

Our Angel

2008-09-08T21:20:00.000-07:00

Today we were blessed to have Marcy enter our life. She is a Child Life Specialist at Children's Hospital. Her job, and the job of many other CLS at children's, is to help the children deal with the realities of hospital life. She is trained to be the patients best friend at the hospital and to problem solve ways to make his stay better.

Let me tell you, Max LOVES her. She won his heart over in the first five minutes. She talked to him for a bit, and made a plan to come back later for painting (play therapy) She returned and they painted and talked for 30 minutes. They made another plan for tomarrow and Max is looking forward to her visit very much! She is also going to go with us to our first Kidney Dialysis appointment downstairs in the Dialysis department to help with Max's anxiety.

She is quite possibly our angel at children's that we'll get to see over and over again! I am SO happy for her support and I am thankful for her and all the others that do her job in Hospitals around the globe!

Monday Morning, September 8... SMILES!

2008-09-08T13:18:00.000-07:00

Thanks to so many of you who have taken the time to come to this site and leave a note for Max. He's smiling!

His numbers are still not going in the right direction, so for those of you that are praying, please pray that they would start to correct themselves quickly. He is taking some juice through a straw without it coming back up, and that's a really good sign.

He slept for most of the night last night (so did Mom and Dad), and so we've got a rested and refreshed outlook today.

To the many churches around the country (and around the world) who took the time to stop and pray for Max this past weekend, we are grateful.

Much Love,
Sam Middlebrook

He Sleeps...

2008-09-07T21:43:00.000-07:00

Today was overall a pretty good day. Max had his second Kidney Dialysis and has done good with that. They were able to pull off a lot of excess fluid that was building up throughout his body. His blood pressure is still a bit high, mostly from the excess fluid, but overall his mood has improved.

We have no idea how long the road ahead is. It may mean Max and I staying in the hospital in Seattle for 1-2 months. While this is a daunting thought, I cling to the truth that my God is bigger than all of this and that He alone hold the future in His hands.

I am amazed and humbled by your responses and prayers. Know that they lift our spirits and encourage our hearts.

Shannon

Day 6 - Sunday, Sept. 7

2008-09-07T12:02:00.000-07:00

For those of you just joining the story, welcome to this page and thanks for thinking of Max!

Max is our youngest son, he is four years old.

He was admitted into St. Joseph's Hospital in Bellingham (our local hospital) on Tuesday morning, fighing E Coli virus. For the record, while at the Pediatric unit at St. Joe's, he received really great care. The numbers on his blood count were going the wrong direction - some normally numbers getting high, and some normally high numbers going low.

The E Coli bacteria progressed into HUS, which stands for Hemolytic Uremic Syndrome.

On Friday night, he was transferred by ambulance to Children's Hospital in Seattle.

He's had somewhat of a rough go of it ever since.

Last night, his blood pressure was up to 130 over 110. With oxygen levels dropping, the medical staff took x-rays which showed some fluid in his lungs. He ran a fever, which has now broken and is doing better. He is on daily dialysis, which is helping his levels for now.

We've been told by the medical staff that he will get worse before he gets better - that we haven't seen the worst of it yet. This is a normal part of dealing with HUS.

So many people are calling and asking what they can do to help - and I cannot express enough gratitude for those calls. Right now, the best thing you can do is simply pray. Pray for healing, and pray for recovery. Pray for this medical staff. Pray also for Levi, Max's big brother. Pray for Shannon and I and we do our best to be everything that we can be for Max and for Levi.

Most of you know me as a pastor and worship leader - some of you, however, know me as a neighbor or a musician, or an online forum dude, so for those of you that are coming to this site that aren't Christians, thanks for understanding the amount of talk about prayer, hope, and faith in God. The only bedrock of hope that we have right now is in Him.

For those of you that STILL want to do something, a great thing you can do for Max is to leave a note on this blog, I promise that every single one of them will be read to him.

We've been told to expect to be here for at least another week, maybe two - and perhaps longer.

We appreciate all of your thoughts and prayers, and ask that you continue to keep us in mind and lift us up in prayer.

Gratefully,
Sam, Shannon, Levi, and Max Middlebrook
ps - to leave a comment, click on the orange "comments" link just below this line.