This is the Maile family. I told you about them a few days ago, when their beautiful daughter, Eliana, passed away. Today was her funeral, Danny and I went to the viewing. Words cannot express the feelings we had. Sweet Eliana looked like a porcelain doll, she was so tiny and perfect. Elizabeth and Eli, our hearts go out to you. The two of you are amazing parents for putting your daughter first in a very trying situation. Just remember, Eliana will always be with you. As for Bridger today, we are still holding. His liver is struggling a little, but it may be due to the infection or his antibiotics, we are not sure yet. He had an echo yesterday looking to make sure that the infections have not started on his valve, and so far so good on that front. He is getting another blood transfusion right now which usually helps him perk up, so here's hoping. Despite it all, my sweet little man still smiles at me when I kiss him and even gives me a giggle when I act silly for him (maybe a little for me too!) We hope to get Bridger a spot in the operating room on Monday to get a new central line placed for his medicines to run through. I thank all of you who keep an eye on our beautiful boy, you'll never know what it means to us to have so many keeping him in their thoughts and prayers.

Taking a turn......not for the better

Bridger's body is infected with three different types of bacteria. The doctors caught it quickly, but has taken quite a toll on our sweet baby. Yesterday, his breathing was worse, his blood pressure was dropping, and his level of awareness began to decrease. He was given a blood transfusion and in the middle of the night he was changed from high flow oxygen to CPAP, due to his increased work of breathing. Right now the main goal is to support Bridger's body as he works through the infections and hopefully he will not have to be intubated (have the breathing tube put in). This morning he did not look to great, but finally around 8:30am he opened his eyes for the first time in over twelve hours and even recognized me as his mom. Hopefully this is a sign of improvement yet to come.

Sooo CLOSE..........

Well we were supposed to go home today, but Bridger's blood work was positive for infection. We don't know what the bacteria is yet so they have started three different antibiotics until they can specify which one he needs. The infection is most likely from his PICC line so they are also checking to see if it has spread. So we are going to be here at least another week. I guess we just can't get enough of the PICU.

More prayers

I know that I have asked alot from those of you who follow our blog, and if it is okay I have another request. Please keep the Maile family in your prayers, their beautiful daughter Eliana is moving on after a seven week battle with Congenital Heart Disease. I became friends with her parents while we have been up here the past two times, they are wonderful people and I am saddened that they have to go through these trials. I hope that they may find peace in Eliana's passing and know that she will no longer be suffereing. You are in my heart Maile family!

Not a whole lot

A few things to discuss today. First, yesterday Bridger tried an inhaled medication for his pulmonary hypertension, but it did not work. So he will just stay on his current medication regimen and we will see how things go. Right now there is not much else that can be done for him, so our plan is to maximize his current medications and take him home on that IV medication that helps his heart (milrinone). They don't usually let patients leave the ICU on this, but they are letting us use it at home because Danny and I feel that it is important for Bridger to know something other than the hospital for his life. In his 7 1/2 months he has lived here for 5 months. So since they can't do much more here right now, they will send us home as is, if all goes well. We will be coming up for weekly echos and blood draws and hopefully that will be frequent enough for us to avoid another ambulance ride. In a couple of months, Bridger will have another cardiac cath to see if his lung pressures have decreased and maybe open the possibility of being a heart transplant candidate. Next on the list, remember a few posts ago I asked for 1000 paper cranes to help our wish for Bridger's improved health to come true. Well my sister-in-law, Maura, has started a blog to follow the progress of our collection of cranes, it is papercranesforbridger.blogspot.com so if any of you want to help or just keep up to date on our quest to make our wish come true you can check it out. I think that is all I have for today.

A little clarification, for the better......

Dr. Kouretas (Bridger's surgeon and life saver) talked with me today. I asked him for his honest opinion and gut feeling about Bridger. He said he feels that this is not a heart failure issue, that it is more a pulmonary hypertension issue that is causing stress on his heart. The good news is that the pulmonary hypertension is reactive (responds to certain medications). So hopefully if we leave the IV heart medication running for a while and tweak the pulmonary meds we can give his heart a little rest while his lungs strengthen. If this happens, .aybe his heart won't get stressed so easily. As for the plan right now, we will just give Bridger some time for his body to try and recover from all that it has been through.

Update after cath conference

I just finished meeting with our doctors. In the meeting with the cardiac team this morning, it was acknowledged that with Bridger's pulmonary pressures as high as they are right now, he is not a candidate for a heart transplant. Bridger had another echo this morning and they were fine with how that looked for now. He was given another new medication today in hopes that reducing his blood pressure will make his heart function more easily. The IV medication for his heart was stopped last night, while at the same time his vomiting increased, so they will restart the IV med to see if that stops the vomiting and if it does we will know he needs that medication. On Monday a pulmonary hypertension specialist will meet with us to discuss stronger medications, however these may damage his liver so they are started with caution. If with the new medications, he has a favorable response Bridger will go to cath lab again in 4-8 weeks to see if his pulmonary pressures have decreased. If so, then we will begin his evaluation for a heart transplant, if not then we will continue to cherish every moment that we are blessed to have our son with us.