Day 73

Today was one of those days where the tears just pour over and they won't stop. His weight has significantly increased. It almost does not look like him. Its very hard to see him that way His wound vac dressing was changed today. They were very pleased with the way it was all healing. So that's good and his sedation and pain we believe is finally well controlled. Those are the positive that came out of today. The increase of his swelling is very bad making it harder for him to breath so they needed to increase his vent settings. Over the last few days his blood pressures have been low, they needed to start him back on epi again for his readings. I was very sad about that but they are hoping to wean it down quickly. But since they have him back on these meds he needs to have an arterial line put back in. This is to make sure he has a constant Bp reading in place and can be monitored more closely. Trying to find arteries they can use has been an issue for a very long time. Hoping that one can be successfully put in place for him. So if things couldn't get bad enough around 6:30 tonight he started having his arrhythmia's. Liam has not had any rhythm issues in over 2 months. He has been on constant amiodarone of 5 for so long with no issues. When he has his episodes it does not reflect on his Bp so much but it's very concerning that he is having these issues again. The last open heart and this infection has set him back a great deal.
The worst part of our day was saying goodbye to Chris. He had to go home and go back to work. I am so very proud of him for making such a hard decision. It was not easy seeing him leave and I know he felt the same. I love you Christopher! You have made me so proud and so happy to be your wife. Liam and Parker are both lucky to have you as their dad.
Days like today are emotionally and physically draining and all I can do is pray!

Day 72

Daddy read him a book tonight and it was the cutest thing ever! Some quality Liam/daddy time!
The day was not a bad day! He did have some fluctuating blood pressures today but his albumin was low, he has been urinating so well that it is drying him out so he needs fluid replacement. Even though he is putting out a lot he gained weight last night. It's all such a vicious cycle.
Main thing with Liam is to get his pain under control. They had to increase some more of his meds overnight and he seemed much more at ease today.
Tomorrow is a big day for him. His surgeon is going to replace his wound vac and take a look at his incision. I pray super hard to the heavens above that she feels it is looking better. We have not gone this far for not proper healing of his body from the last Open heart. It will be two weeks tomorrow already since his surgery. My Prayers tonight.... Our Heavenly Father, thank you for all you have given us and forgive us of our sins. Thank you for our Liam and all that he is. Please god heal his body let us receive some hopeful news tomorrow. Let him continue to fight this battle. Hold him tightly in your arms and give him some squeezes, help him with losing more weight and hold his lungs in your hands to help him breath better and wean on his ventilator and get a good chest X-ray. Stable out his blood pressures so they can wean on his meds. Please don't let him feel pain. Help him by your love to keep him comfortable. Through this whole journey, we have never wanted him to have pain, please help him, hold him. I know Lord I ask for so much but we believe in you. We all believe in the power of prayer along with miracles. Thank you for hearing our prayers. Amen

Day 71

My babies day started out so super fun Uncle Tangy came back from California to visit us again. We love when he is here. He bring so much joy to all of our lives, Liam stares at him and hold his hands for hours. We don't know when we will see him again but he will always be here in spirit.
Liam's pain was better controlled today. He was more of himself that is for sure. They took him down to the cath lab again today. They replaced his pic line. He has had one on the right leg for almost 2 months. They put one in his left leg. This is where he gets all his meds and blood draws. It is a pretty important access line for him. Another field trip for Mr. Liam. He is one busy boy! His surgeon stopped in today after a weekend away. She just wants to continue the wound vac for a period of time. Hopefully it helps with the healing process of his chest. Of course if the infection starts to deteriorate his little body by not healing his sternum or not helping the tissues heal then we have a horrible situation. She feels at this time and even after talking to all of her colleagues that we will continue to proceed forward. She is such an amazing person and cares so much for her patients. She continues to be straightforward with Chris and I, she promises to never lead us down the wrong path. When it starts to be to much or there becomes no hope she will let us know. Everyone is Still so uncertain of his future but everyday we spend with him is a miracle. He still has so many obstacles to endure but he continues to fight and so do we! His belly is still big but today was successful. He had three large bowel movements. This is a huge deal for him. His belly instantly became softer not has hard. Nurse Wendy and I laughed at him so hard. He did not enjoy it while it was happening but afterwards it was like he made a huge sigh of relief and fell asleep. That was priceless. It's like he has no idea what was happening and he did not like it but afterwards its the best feeling. He is so funny.
I love reading all of your posts. They warm our hearts more then we could ever tell you. Keep them coming!! Liam can sense all of your love! Xoxo

Day70

Liam was not a happy camper today. His belly has gotten rather large again and he was having a lot of discomfort. They got an X-ray of his belly and it showed a lot of air. They gave him suppositories hopefully that would help let him pass some gas. They also went up on his sedation and pain meds. He did not feel good at all today. So is mediastinal chest tube fell out today so there was some leaking and air around the site. They wanted to clean it up but while they were there they replaced his wound vac. He was in a lot of pain. He did not tolerate that procedure well. They had to give him lots of pain meds and he did not like it. My poor baby. He is fighting so so hard but its a rough road trying to get there. Prayers for Liam make a difference. My Aunt Lynn said something awesome today...Faith moves God, we need to remember that. Faith is all we have...
He had a bad day but
We had some great visitors to keep us occupied. My Aunt Lynn, my cousin Rochelle, and my cousin Alyssa drove up to meet our superhero and Aunt Mary and Uncle Rick also wanted to spend the day with us too. They love Liam as much as we do!!!

Day 69

Liam had a good day today! Our girl Nurse Wendy was on...he loves her so much and so do we. Grandma and Grandpa Mirone and Aunt Jamie and Uncle Nate were here to visit as well. He is such a champ. They were able to wean off his epi today and his Bp remained stable. No major problems there. They also were able to make a wean on his vent as well. They decided to also try to wean his Ativan just a tiny bit. He seem to tolerate the minor change well. Steady and slow changes for him. He likes it all done on his time. He is a happy little boy even with all his complications.

Day 68

They went back in today and washed out his chest with medicine. Their plan was to close his bone and put a wound vac on his chest. He tolerated all very well, they did not have to go up on any of his BP meds or barely increase his vent settings. They closed his bone but externally they left openings for drainage from his infection. They placed a wound vac over top of the incision to help heal and pull some of the infection. They were happy about being able to do all this without any difficulties. We hope he stays stable with no issues. We can not let any of this bring our tough man down.
So we all know he is Superman right well now with the wound vac he looks like Iron Man... My man is one big superhero all around.

Day 67

Today was a quiet day. No major changes. As his cultures continue to come back infectious disease adjusts his antibiotics to widen the susceptibility of the infection. His WBC was higher today from yesterday. But his surgeon said she would stir things up when she cleaned him out yesterday. Their plan is to try to close more tomorrow along with another wash out. Being able to close him and remove as much plastic as they can will benefit him. His Bp has been fluctuating lower today, so I hope his little body is able to tolerate all that continues to be thrown at him. He was comfortable all day today and when he did wake up he was our Liam. Our sweet boy with those gorgeous tell all eyes!!
I cannot tell you all how much these amazing people that we have met here at this hospital mean to Chris and I. They are all apart of our family. We really love all of them. They make it easier to be away from home. These people will be apart of our lives forever. Chris and I are also blessed to have so many of you loving and supporting us. Words cannot express how much you all mean to us as well. Some of you I have never met but knowing you all love and pray for this little miracle as much as we do is overwhelming. Thank you. Xoxo
I also would like to take a minute to pray for all the others that are going through difficult situations. Life is sometimes not easy but our only way of surviving is believing in our God our Savior. That's how we get up in the morning!