Thankful for small things

Broc was discharged last Monday evening. We were very happy to be home as Tuesday was our 13th Wedding Anniversary. Having all the uncertainties in our life spending our anniversary together is very important for our family. We had planned a date night for our Anniversary on Sat but Broc and I were in the hospital so that had to be canceled too. The boys were very happy to get their presents. By their faces you can tell they were thrilled.

They cultured Brocs site before we left Monday and it came back positive for Staph. Even though he was given a strong antibiotic, everyone was very concerned about Broc having the old line so it was in his best interest to replace it. We were coming down Friday for some urology testing so they were able to fit Broc on the IR schedule to replace it. Unfortunately this new line involves a lot more for me as we have to instil ethanol into each lumen for 6 hours and then draw it out. This will help to try and keep his lines more infection free. Its not a definite cure but we know that we are doing all we can.

His urology testing was amazing. As usual he was a champ and cooperate really well. We found out that his bladder pressures had gone from 90-23!!!! We are so happy as this means that his Tethered Cord surgery he had in April wasn't for nothing. It really did help. Now to deal with the night time wetting and we will be all good. We are waking him up during the night to go and hoping this will help with the amount of laundry we have the next morning. It really cannot be helped as his TPN really is a lot of fluid for his little body.

The weekend has been crazy as his line site has been bleeding all weekend. We have tried to keep him still as much as possible. We even attended a friends graduation to have a little fun. Ethan is a great friend to our boys, They really look up to him and he accepts them for who they are. He's not afraid of Brocs lines and treats him like a regular little boy. Broc was not very happy as he had to stay in his chair the entire time to keep him safe and not bleed.

Congratulations Ethan!!! We are so proud of you with all that you are accomplishing. Thank you for being a great example for the boys to follow.

Thank you to all the friends that helped me out this past week /weekend. Sometimes days and weeks just get really tough. A person can only be strong for so long. I love you all.

We are looking forward to some quite weeks ahead.

Controlling pain

Yesterday was a rough day for Broc. We only found out towards the end of the day that his pain was really unbearable. He finally broke down and told us that his line hurts really bad. His team and I asked him why he didn't tell us sooner that he had so much pain. Well his reply had us all in tears. Everyone keeps telling him that he's a trooper and so brave so he took that to mean that he can push through his pain. We had to explain to him that even brave people take pain medicine. We are hoping for a much better day today. He has had pain meds twice so far today. It hurts for him to play the wii or just stand up to use the restroom.

The plan for today is to try and keep him pain free as much as possible. The final read on his cultures will be tomorrow morning. The IR team will also come and look at his line and see if they need to do surgery and change it out.

There is a little concern about a red,hard mass around his site which wasn't there yesterday. They are hoping that the continued antibiotics will help clear this. We are not sure yet if Broc will have to continue antibiotics once he foes home. They will check all his lsbs again tomorrow to make sure they are still stable.

The highlight of Broc's day so far was singing one of the new Kingdom songs No. 141. He is still humming it as I type this.

Thank you to the friends who came to visit us , who called ,texted and offered prayers for us.

Things can change so quickly.

I cannot believe its been a month since in last posted. Thankfully things have been okay. I was going to post 2 days ago how well Broc was doing as he didn't get a high fever. He still had some sort of viral infection but nothing we couldn't handle at home.
On Thursday him and Mark were playing in the house and Broc's central line got snagged. He came and showed me and it looked like the cuff of the line was near the incisions site. He started complaining of it being very painful to touch. I took a pic of it and noticed it was a little red by the end of the day. I sent to the picture to his IR team and they said it looks a little inflamed but nothing to be concerned about. They did see that we were coming to to Riley on the 15th for a test.once we were done with the test we were going to pop in at IR and let them take a look at it to see if it needed to be changed out. If he got a fever or any other symptoms then we were to call them back.
Yesterday morning Broc woke up and was in a lot of pain at his central line site. I took one look at it and saw how much the redness had spread. I knew this was not normal and sent another picture to the IR team.
They were very concerned about how his skin looked and told us to pack our bags and head down.
Broc was DX with a cellulitus infection. It had spread pretty rapidly by the time we got here.
They started him on antibiotics immediately and drew labs. He will be on antibiotics until Sunday night. If they feel he still needs more and his cultures have not grown then he will go home on antibiotics.
The IR team will come by and take a look at his line on Monday to see if it needs to be replaced.
Broc is still in pain which makes him very grouchy. So far he is responding well to the antibiotics as the infection has not spread any further.
Thank you for all the visits ,prayers ,love and support.