Tuesday, November 15, 2011

Hip Infection

Bryson started complaining of his left hip hurting yesterday. I looked at his incision and it looked a little weepy. I started taking his temp. It was ranging from 99 to 100, but good for me to keep track of a baseline.

Today, his incision was starting to open and oozing lots of sorry but pus. I can't stand that word nor the actual stuff...gag!!! I will spare you the video that I sent to the doctor and some of my friends that I knew wouldn't abandon me!!!

Our Dr. has decided to first try oral antibiotics, warm compresses and us expressing the pus out as much as possible. We will go for an xray in two days hoping to see the hardware in his hip is fine and not the source of infection as that would be devastating to say the least at this point!

Wednesday, November 9, 2011

A little Trooper!

Thanks for all the emails wondering how Mr. B is doing! He is actually doing quite well. I was snuggling with him last night telling him I don't know too many people that could tolerate being completely immobile like he has been even though it is a great cure for ADHD. He is just such a good little boy.

We are managing to get a few hours of school work done each day.

He is managing to play more video games than he has in a year in the past few days, but oh well a boy has to do what a boy has to do to get through these six weeks!

We have been able to space pain meds a little further apart. It seems to catch up with him in the evening and the middle of the night. We have been forcing him to sit in a regular chair with his legs propped on another chair in front of him for an hour each day. He doesn't like this position as it stretches out all the soft tissue work they did, but it is important for him to do.

As you can see in the photo, Berekley doesn't like to leave his side. It is the cutest thing ever. When Robert and I transfer Bryson to the living room, Berekley follows us the whole way making sure Bryson is fine. When Bryson cries, Berekley gets even closer to him.  Very sweet both the dog and the boy! :-)

Saturday, November 5, 2011

I Love You MOM!!!

It was a tad bit overwhelming once we got back to the RMH. Bryson was in quite a bit of pain from all the transferring and we noticed his right cast was pretty loose at the top once the swelling had gone down, which of course led to a frantic phone call to his doctor. I also was starting to process all that had happened in the past week and felt so bad for my son. Secretly hoping we had not made a bad decision going through with this humongous surgery.

Anyhow, I laid down with Bryson getting him to go to sleep so he would stop crying. Once he was asleep I figured I would start packing up our belongings. I started with Bryson's school area where a week prior he had sat doing his school work and other activities. And this is what I found..............
"I love you mom you give me strate feet."

My secret was answered!

Friday, November 4, 2011

He's Home!!!

Thank you to everyone praying for our adventure home! I have to tell you it went with only a few funny little hiccups that will provide Lorna and I with laughter for years to come, but overall it went smooth.  

Could not have been prouder of my son!!! 

All our transfer practices the PT had us do in an airplane simulation made for smooth and perfect transfers on the real plane. Lorna would organize the attendants on how to assist and then she and I were team transfer!

He never had to relieve any bodily functions on the flight!
 Can you say THANK YOU JESUS?!?!?
We had the urinal down.
It was the other we never practiced in our
flight simulations!!!

Bryson never complained of pain until the last ten minutes of our trip. He saved that for the ride home! But once home, he was distracted and ever so happy. Papa got the video games set up in our room where he will reside for the next six weeks alongside our bed.

Oh thank you so much my dear and sweet friend Lorna. God knew I needed YOU on this trip to help advocate when things were not going as expected. To feed me my gluten free meals and to be my traveling companion. Thank you for giving up your hard earned vacation time to love on me and my boy!!! Love you much!!!!!

Tomorrow I will share what I found when we went back to the RMH.
Bring your tissue!

Thursday, November 3, 2011

Thankful Thursday from the RMH!

Thankful that Bryson's biggest surgery of his life is a week behind us!

Thankful for the continued healing of a boy needing blood transfusions 

to a boy leaving the hospital even though the smile was very sort lived!

Thankful that we got to breathe fresh fall air today!

Thankful for my laptop back in my lap!

Thankful for the RMH being supportive of our situation and welcoming Lorna at all times!

Thankful for our phenomenal Dr!

Thankful for narcotics for pain control!

Thankful beyond words which can not adequately express that Lorna was able to stay on to help. Honestly, This is soooo much harder without the amenities of the hospital. There is absolutely no way one person and at times two people can manage him. We have our work cut out for us for the next six weeks! 

Thankful that Bryson is such a sweet and precious boy. It makes it that much easier to care for him during some of these stressful days!

Please pray for our travels tomorrow. We certainly are going to look like a circus act at the airport, but beyond the show is a great deal of stress. We have to be so careful when we transfer Bryson to keep his torso and legs in alignment. He still is in quite a bit of pain.  This will be a hard day for him starting at 4:30 am. Please pray for pain management and that Lorna and I are able to adequately meet all his needs 30,000 feet in the sky for 7 hours and during the layover in Chicago!

Wednesday, November 2, 2011

Last Night in Hospital

Bryson checked off each item of his to do list!He still i's in a lot of pain, but it was definitely better managed today. Only one melt down this evening. We get discharged tomorrow
to the RMH and then our adventure begins at 4:30 Friday morning to get home!

Lorna and I were trained on how to properly lift and transfer Bryson. They created an airplane simulation for us to practice transferring him. I think we have it down! They are also creating a custom board for us to keep under him so the weight of his casts don't pull his feet down when sitting in the plane.

Lots of logistics go into getting this kiddo home!

Oh home, home sweet home!

Tuesday, November 1, 2011

Final Plan

It was becoming evident that I would not be able to travel alone with Bryson. The hospital can't release him if there is a safety concern. At this point, Bryson is a two man lift. My 38 pounds of love now weighs well into the 60's due to casts. Not to mention you cant just pick him up like a sack of potatoes!There were many other logistic items that were making traveling alone not a reality. We did have two other friends (thanks Susan and Laura) who offered to fly out and help transport. Lorna was seeing how difficult it was becoming so she called her supervisor and requested two more vacation days if they could get someone to cover her shifts. Knowing our situation, her supervisor granted the extra vacation!

I can't explain the relief this brings to not only me but to Robert who 3,000 miles away feels helpless for Bryson and I. I hope that someday I can be the friend to her that she has been to me this past week. Lorna's friendship always creates growth in me. I love that!

Bryson still has many things to get accomplished by Thursday. I know he can do it! He was able to transfer with two person lift into a wheelchair this afternoon. He sat for one hour! Yeah! He is wore out and sleeping now!

Dr is asking for us to be at RMH for at least 24 hours after discharge so he had to be out of
here Thursday to fly home Friday. Come on Mr. B let's finish the checklist!

Tickets are exchanged for Friday!

We have a plan!

As wonderful as our well thought out plans were we will not see them to fruition. Instead we will say goodbye to Lorna later today. She will fly home early in the morning without us {insert giant tears}.

Our new plan if things keep going in the direction they are the Dr will release us Thursday to stay at the RMH for 24 hours and then released to fly home.

The following things MUST happen for this plan to work.
•Bryson needs to no longer need oxygen
•He needs to on only oral meds
•He needs to go big potty on his own.
•He needs to get meds spread further apart.
•He needs to get out of bed and into wheelchair.
Behind each cloud is Light! Each day is better than Saturday night!

Monday, October 31, 2011

A better morning report

Finally able to report a happy morning report!

We only had one hard hour last night playing catch up with pain.

After two pints of blood, respiratory therapies and a mommy becoming more assertive we have a boy with closer to normal vitals and better pain management.

Our hope today is to finally move out of PICU and onto a regular floor with hopes of a miracle for him to be well enough to be able to fly home Wednesday. We can at least have hope!

Thanks to all of you for your support, prayers and love.