Max's Follow-up

Here's a cute picture.  Max couldn't sleep.  Grandpa came to visit and got him to sleep.

Max went to the family doctor who said he looked good and sent us on our way.  He then went to physical therapy.  He was given home exercises and sent on our way.  We saw infectious disease on December 6th and his picc line was removed the morning of the 7th.  His levels are looking good and we are doing oral antibiotics until the 20th with one more blood draw on the 19th.  I haven't told Max about this one because it might hurt.  The blood draws would come from his picc line, so no pokes and no pain.  This one will have to be done normally, with a needle, because he doesn't have the picc line.





For my reference, his levels were these:

At time of release:
ESR - 88
CRP - 4.8

11/28
ESR - 67
CRP - 1.6

12/5
ESR - 44
CRP - .5

Normal CRP is less than .8, so he is normal.  Normal ESR is below 13 for his age.  This rate takes longer to drop.

I'm hoping that his level on the 19th will be normal for the ESR.

*Update*

He had his final blood test and his ESR was like 7, so he is doing great!  I told him his tests looked good and he asked if he was better.  I told him he was and so he decided he could finally take the bandaids off his incision and look at them.  Funny how he couldn't look at it until he was all better!

Monday at Primary's

This is his picc line.  Sorry if it is too graphic.  At the bottom was a normal looking IV tube for medicine, but this is the top at entry of the skin.

Monday we were supposed to have the MRI early, but everything was pushed back and we didn't get in until just after noon.  Max spent the morning playing in the playroom.  He walked with his cruches, but didn't use them much other than holding them.  He was doing really well.   He went in for the MRI and had to be sedated for this as well.  This time they had a different option and didn't have to use the stuff that made his vision blurred.  After the MRI we waited around in his room for information on the results.  We also trained on how to do the picc line and watched them change his dressing should we have to do that.  We were also trained on what to do if it ever broke or came out of his arm.

Finally the results came back about the MRI and his bones were clear.  The immune/genetic test came back clear as well.  This would then mean we could get out of the hospital.  They did this huge discharge sheet where they had arranged appointments for all the follow-ups and gave us phone numbers for everywhere.  We were to see our family doctor, a Physical Therapist, the surgeon and infectious disease after 2 weeks.  We would also have home care.  They would provide the IV antibiotics and a nurse would come teach us the specific protocol for the home drug.  A nurse would also come weekly to change his dressings and to pull blood for tests.

We were finally sent on our way around 5 p.m.  Such a relief.

Sunday at Primary's

Early Sunday morning (like 4 a.m.) they took Max's blood.  These blood tests would tell us if he needed to have surgery or not.  They also decided to test him for a disorder that might make him more susceptible to staph infection.  They also decided to schedule an MRI for Monday morning to make sure the infection hadn't gotten to his bone or started in his bone. 

So, our big hurdles that we were praying for were these things:
1. Please don't let it be genetic where he might have to deal with this more often.
2. Please don't let the MRI show it in the bone because this would mean more treatment.
3. Please let his levels drop so that he doesn' need another drain surgery.

Sunday morning the surgeon came by and looked at his hip.  He also told us the levels had dropped significantly.  They went from like 13.8 to 8.4, which was fantastic.  He said Max wouldn't need surgery.  This was huge because there was a 50/50 chance he would need it again.  The other 2 things we needed to keep praying for.

Max started physical therapy and walked with his crutches all the way to the play room.  The lady was amazed by this.  When he got to the play room (which was quite far) he said, "Hallelujah!"  It was so funny.  He even walked back with the crutches after playing in the playroom.  The playroom was fantastic!

Later they had to put his picc line in.  This line went in his right arm.  It enters in a vein and goes right to his heart.  This way the antibiotics could go straight to his blood system.  They had to sedate him for this and had to use the same sedation as they had for the aspiration.  I was not excited about him having the blurred vision.  As he was waking up some of our very good friends showed up.  I can't tell you the love that I felt by them driving so far to see us.  I started to cry when they got there and tried to hold it in, but it meant so much!  It was also a crazy time.  Max was crying for his brothers and sister.  When they got there he was just loving them and hugging them.  It was a sweet, humbling moment.

After all the visitors left, Shane took the kids home.  Uncle Dan, Aunt McKell and Ivy came later that night to visit Max and he loved that!  He was able to do face time with Millie as well and thought that was cool.  That night he actually had a little bit of an appetite and got to have pizza.  He also had a little more of his sense of humor.  He went to the bathroom and it was less than desireable with antibiotics.  He went and said, "Mom, you gotta see this!"  The nurses started cracking up, as did I.  He is too funny!

Sunday night was pretty good. Max slept better because the nurses didn't interrupt as much and his blood draw could come from the picc line so he didn't get pricked and woken up. He did occassionaly scream out and talk in his sleep saying things that I imagine he would have said if he had been awake while they were putting in the picc line. That was very strange and sad.

Creations in the playroom

Saturday at Primary's

Saturday at Primary's was not very eventful. Just try to have him move a little, relax, have visitors, and wait for the test results on Sunday. Grandma and Grandpa Mortimer and Aunt Carrie came to visit. Grandpa layed down with Max and Max fell asleep. He was so tired and just couldn't sleep. It was so sweet! Dad brought up London for a bit and brought needed supplies. Max was also able to order from room service. Anything he wanted, any time. He enjoyed this, but his appetite was also not there.

Cousins who couldn't visit said hi on Dad's camera and Max got to see it.

Friday at Primary's

We got to Primary Children's Medical Center on Friday, November 18th around 10 or 11 a.m.  We got there after following a driver that was driving super reckless.  I had to call 911 and report their license plate and location.  Shortly after hanging up with 911, the driver his the barrier on the driver's side and continued on driving.  It was crazy and really started a crazy day!  We missed Max's field trip to the aquarium and instead spent the day in the ER.  Max had his first fevers while in the ER.  They did blood tests and levels seemed more elevated.  They did another ultrasound and saw quite a bit of fluid on his hip.  They did the ultrasound differently than the other hospital and I just feel that they know what they are doing there and they possibly missed it at the first hospital because of how they were looking at it.  This could have been a blessing in disguise because I feel that by being at Primary's we were in better hands.

They started an IV for Max so they could sedate him for a procedure.  They also did more x-rays, but he really couldn't move his hip and those weren't as successful.  They sedated him and did an ultrasound on his hip while they stuck a needle in his hip and aspirated the fluid from it.  They were amazed at the amount of fluid.  They took out 12cc of fluid.  It looked pussy and murky.  They decided it must be bacterial and they should operate.  This first sedation was a dissociative sedation.  So, he was basically awake, but not aware of anything going on.  When he came out of it his vision was blurred and this really freaked him out.  He was a mess.  I tried to calm him down, but it just really freaked him.  Shane arrived shortly after this and sat with Max and me for a little while.  They decided to do surgery for sure and so I decided to stay and Shane went home to get London who had been with Carrie and Nate for most the day and now was with Julie and Jake.  He also was going to come back in the morning with clothes and such for us since we weren't prepared for this.  Shane left to beat a storm, so we just waited alone for about a half hour.  They then took him back to the OR.  Right after he fell asleep I went to a waiting room and he went into surgery all alone.  This was kind of my breaking point.  It was really hard to send my baby all alone into the OR.  I just broke down and was grateful that the waiting room was completely empty.

The surgeon explained the surgery.  They cut a slit in his skin over the hip.  They they stick a drain down into his joint and flush it out with like 2 liters of saline.  It takes out as much infection as they can.  They then stitch up the cut and leave a little drain hanging out of it.  It looks like a skinny balloon that isn't inflated.  It comes out and is covered with enormous amounts of dressing so it can drain all the extra infection out.  The surgeon said they would monitor his levels via blood tests and then decide on Sunday if they would perform surgery again on Sunday or not.  We prayed that they wouldn't need to perform surgery.  After surgery he was put on IV antibiotics every 6 hours.  At this point they still didn't know what bacteria it was, but they have to make their best guess while the bacteria grows from the samples they aspirated.  Most cases are Staph and so they treat accordingly.

After waking up from surgery we were taken to his room (#3032) and tucked in for the night.  But not really because people came in constantly.  Max had been so thirsty all day and couldn't drink in case he needed surgery.  He finally got a root bear slush and this helped a little, as did the morphine.

Our Road to Primary's

On Wednesday, November 16th, at 2 a.m., Max woke up screaming in pain.  He said that his leg hurt and that he couldn't walk on it.  At first I thought it could be growing pains.  He has had them pretty bad in the past and they have gotten better in the morning.  I rubbed his leg until he fell asleep again.  The next morning he was saying it still hurt, but I still wasn't convinced as to how bad it was.  Kids this age are hard to read.  Sometimes he screams at a tiny thing, just to make a stink.  So, I called the doctor's office and scheduled an appointment, just to be safe.  I dropped him off to my Mom and went to work because I knew I had to take a day off later that week to take Max on his field trip.  When I picked him up he was crying about the pain.  I carried him to the car and we went to the doctor.  The doctor examined him and determined it was his hip.  He said he wanted to make sure it wasn't an infection so they did a blood test.  His white blood cells were a little elevated as was something else.  He said he recommended we go to the hospital for some tests just to rule out an infection.  We went to the hospital and he had x-rays done and a couple blood tests.  He also had an ultrasound to check for fluid in his hip joint.  Everything looked pretty normal, so we were told to watch him and give him pain meds to see if it got any better.

On Thursday his pain was about the same so I stayed home from work.  The doctor called and said that he did notice a clump on his x-ray that looked like he could just have bad constipation.  I wasn't sure about this, but was willing to try anything.  He also gave us a stronger pain medication for Max.  We were told to give him the new medication and to give him an enema.  We did that and the enema helped clean him out, but not relieve the pain.  The new medication did relieve some pressure and he didn't cry as much, but he still refused to move his hip.  At this point the doctors thought it could be toxic synovitis, which gets better after a few days.

On Friday morning Max wasn't any better.  I just couldn't believe that this was how things were supposed to be and I didn't want to keep giving him medication that wasn't going to help him.  I called the doctor and asked him what we could do.  He said he thought we may need an MRI, but he would probably need to be sedated for that and they don't do that at our local hospital that is covered by our insurance.  So, her sent us up to Primary Children's Medical Center to the ER to see what they wanted to do.  Everything started from there.

They Say It's Your Birthday...

And I didn't even blog about it!  Really, November was just crazy at our house and so I didn't get to blog about Andrew's birthday.  He turned 13!  What?!  That boy was 3 when we got married.  The time has sure flown by and he is a joy to have around.  Here are a few pics that are classic Andrew.  Looking at them he is really starting to look like a teenager.  It kind of makes me sad...

Halloween 2011

Yes that's right, I am blogging about Halloween...finally!  We had a fun Halloween.  We decorated pumpkins...

We went trick-or-treating a ton!    We were also able to go to Ultradent's work Halloween thing for families on the Friday before.  Shane also got a new job and his new work (1-800Contacts) had a family thing that same Friday and they invited us to attend.  We did attend and so the kids got double trick-or-treating that day.   We also had the normal trick-or-treating on Halloween.

Shane and I went to a party the Saturday before.

On Halloween Shane started his new job and then we did the ward trunk-or-treat before hitting a few houses for the experience.