Friday, October 3, 2008

Saying Goodbye to Children's Hospital

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!

Thursday, October 2, 2008

The Middlebrook Way

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.


The Beginning of the End...

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.


Tuesday, September 30, 2008

Another Step in the Right Direction!

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.


Sunday, September 28, 2008

A Sight for Sore Eyes

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.


Saturday, September 27, 2008

One Step Closer

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.


Thursday, September 25, 2008

The Light at the End of the Tunnel

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!