April 30

Well we finally have a diagnosis. After 6 long days we are finally getting some where. He has metapneumovirus. I guess that its like/similar to RSV. So we are in the holding pattern. It is now just up to his lungs to heal. There is not a ton that they can give him to "heal" it. He will stay on his his steriod, zithromax (med) and his nebulizers. We are still on the 8th floor (PICU) but I hoping to be back on a peds floor in the next couple days.

Wes is still really struggling at home. Very out of it and sleeping in small increments. His cough is better and today was the first day without a fever. But it is till gonna be a while til I can go home or have Mark up here.

April 29

Today is the 3 year anniversary of my Moms death. I think of her so often. Especially now with all the new stuff going one with Max. It would have broken her heart to see her grandson going some of the things she went though. But she would have been filled with wisdom, strength, encouragement, and Max cuddles...me cuddles  =).
I am thankful that she got to meet her grandsons. To hold their hands, sing with them, and pray over them. She was an amazing woman, I was so very blessed to have her as a Mother.

I am trying to get some of the pics from a couple of her NICU visits but I can't get them to upload. I'll try again a little later.

April 27- Second post

This evening we were moved to PICU. So far NOTHING has changed; NO settings, NO venting, NO meds, NO nebs (nebulizers), No NOTHING. I am more than frustrated at this point. Not sure why in the world they made us move. Not sure why they haven't changed anything. Not sure why no one seems to be listening to me.

I asked the nurse if I could go up to the roof and scream. She just laughed and said that if she knew how to get up there she would have done it more than once in her nursing career. That was one of the brief smiles today. The other was when my son who I thought was sleeping called out to me and said "kiss Mama kiss." Thank Heaven for that little Man."

April 27

The last few days have been trying. Max is still on a peds floor, but he is still mostlikely going to be moved to the PICU. He is making progress but not as fast as some of the doctors would like. 

Yesterday we upsized his trach. This is in hopes that if he needs more ventilation that he will be able to receive the amount of pressure that is needed. The smaller trach  was to little to have been able to give him enough support.
After they changed his trach they changed the way they were aiding his breathing. It FAILED. His oxygen skyrocketed. His work of breathing increased and rate of breath increased. After less than an hour they put him back onto the high flow nasal cannula. It took all night but he is back to where he was yesterday. They suspect that some of his lungs collapsed during the change.
I was irate. From the beginning I told them that he doesn't do well on trach collars. They didn't listen, that is what made me so upset. After that episode I packed up all our stuff thinking they would move us to the PICU (that is what they have been pushing on us the whole time), they didn't. Needless to say we are frustrated, confused, and a little upset.
We still have no real answer to what it is. If it is a virus, infection, kind of pneumonia. We just have to wait and see how he responds to meds and neds.

I haven't been able to see Wes or Mark since Tuesday. Wes hasn't been 100% the last few day. Today Wes was diagnosed with pneumonia.  Mark caught it early so he doesn't need to be admitted. But, It means we can't have contact with them. We can't risk exposing Max to any other germs.

I am so sick of this chaos. I am not good with chaos. I like control. This is really getting old. I just want my family together.

April 25

We made an early appearance to the hospital. We were scheduled to go to the clinic at 10:30. Max wanted to come in earlier so we made a trip to the ER at 6am. He was admitted and we are now on a peds floor. He has early pneumonia...or something like it. He is not getting chemo until this new virus is under control. So again we will be here for an undetermined amount of time.

Yesterday was pretty rough. Thankfully Oma Mary (My Aunt and Honorary Oma) came and cuddled for hours. Max slept better on her lap than he has in weeks. Yay Oma Mary! Night time was... interesting. He had a hard time keeping his sats up. So they set up a couple different breathing options until they found one that worked. He also has breathing treatments every 2 hours so that doesn't lend well to a restful night. 
Today was MUCH better.  He breathing is slower, less labored, heart rate lower, all around better! I even had him laughing! We had a visit from Aunt Becky (my sister) and "Auntie" Anne (a good friend of mine). I like that cause it breaks up the day. Plus Anne spoiled me and brought chinese food!

So it is a waiting game. We wait til the virus is gone. Then make sure he is ready for another round of chemo. Like life has been the last month....hurry and wait.

April 18

Change of plans!!!!
We don't have to be admitted tomorrow for "chemo weekend"! They changed our schedule around a little. We now have to go in on Tuesday through Thursday next week. I am so thrilled that he gets a whole week home (God willing) before chemo. It will give him time to get healthier and stronger for the next round.

Everyday he is a little more himself. Today he wasn't real active but he talked more. He walked around a little bit and SMILED!!!  I missed that most of all.

April 17

We are home! Only for 48 hours but we are thrilled to under one roof.
Max will go back to Helen DeVos Thursday for what we call "Chemo Weekend." He will be admitted and get chemo Thursday, have a recovery day Friday, and then Chemo again on Saturday.

Max is very happy to be home. He isn't real playful but I can tell he is less stressed. He just sits on the couch and watches Wes run around. Once in a while Wes will bring him a toy, but it is pretty much just observing.

April 15 (I am just gonna do dates from now on.)

Well, we are still here...the hospital. I am extremely thankful for this place and its location so close to home. However, I would rather be at home with my family all under one roof.
Our quick ER visit has become almost a week long stay. We thought we would be going home tomorrow but Max has had a rough 24 hours. His weight went up a pound in on night. He retained a ton of fluids. His breathing became labored and fast. His heart rate elevated. And, finally his fevers returned.
They gave him lasiks (a diuretic) to make him pee. A chest x-ray for the breathing which determined that his bolis feedings were to much for him right now. So for the time being he is on a feeding pump.

I want to apologize for my "matter of fact" blogging. I am not the best with words. And, to be honest I am still processing all this yet. My heart is aching and my head is still spinning.

Max's Hospital Haircut

Max with Milo before his haircut.

"Auntie" Heather giving Max his haircut. I am trying to get his lip out. He likes to bite his lower lip, its his self soothe.

 

All finished and so handsome!!!

 

Hospital Visit

Yesterday Max had his on again off again fevers. But at 7:00 they got to high and we had to take him in. He counts had plummeted since the day before. So we were admitted. We will be here til at least Friday, but most likely through the weekend.
They are monitoring his fevers, giving him a couple different antibiotics, blood transfusion, and shot of some kind that boosts white blood cell growth. I am praying that we can get on top of these fevers. The poor little guy has been dealing with them for over 2 weeks now.

I'll post more later, Max is awake and wants to rock....again.

First Monday Chemo

Today was Max's first Monday chemo. It went surprisingly well and it was quick. My Dad came with and hung out. Max sat on Papa's lap and cuddled the whole time. Wes got to go to "school" and hang out with Grandma; who is one of his most favorite people so I know he had a good time at home.

Cuddles with Papa...and Milo of course.

They told us to expect that low grade fevers (which he has had for the last week), jaw pain, and his hair to start falling out in the next few weeks. So far he just still wants constant cuddles and to rock in the rocking chair. The doctors also finally okayed me to give him some tylenol so maybe, just maybe he will sleep tonight - Fingers crossed.

Good night All. We are going to bed early here.  =)

Unexpected Long Day

Today Max had his first appointment at the oncology clinic. His blood work looked great other than he was anemic. So he needed a blood transfusion. So, our 60 minute appointment turned into almost 7 hours. We sat in a room for 2 hours waiting for labs, then waited 2 hours for blood, then the transfusions lasted 2 hours. It was a LONG day. Max was a trooper. He sat on my lap the whole time. He'd fall asleep randomly and cuddle Milo (his stuffed duck). He is so stinkin cute!
Slowly the color is returning to his face and his eyes look a little brighter. Hopefully he will actually sleep tonight and not have anymore fevers.

Cancer stinks. That is all I have to say about that.

Max, chemo or sick????

The last couple day have been trying. I am having a hard time figuring out if Max isn't feeling good because of the chemo or if something else is going on. It is so difficult watching your child struggle and there is nothing you can do to comfort them. Thankfully we have an appointment tomorrow.  However I am a little scared that they will admit him. Which to Max is the worst thing in the whole world. This is already more difficult than I anticipated.
Please pray that Max can get a good night of sleep and no more fevers. 

Max is home!

Max came home from the hospital today! He is feeling pretty good. He is pretty cuddly but I can handle that.
He has had a couple rough nights but we are hoping that the severe nausea has subsided. He has really handled everything very well. He is such a trooper.

Thanks to our amazing church Max came home to a clean house! Not only a clean house but disinfected toys as well. Hopefully this will cut down on germs. We need a healthy Max Man.
Thanks Haven ladies!!!