A new central line

We made it to surgery today. Bridger was supposed to go in at 10:30am, but in true fashion they didn't take him until almost 2:00pm. It didn't take too long, he didn't bleed alot, and they were able to take the breathing tube out in the OR so all in all it went well. Now because of his pulmonary hypertension these smaller procedures are not as cut and dry as before, there is more risk in putting him on a breathing tube and under general anesthesia, so I am glad there were no surprises today. Bridger now had a central line in his right thigh, hopefully we can hang on to this one for a bit. I posted on the other blog that we have 400 cranes up here at the hospital, I think we may have surpassed the 1000, so maybe that means I will be able to make the same wish twice (wouldn't that increase our odds?). Thank you all sooo much for helping us with this. So for the rest of the day the plan is just to get Bridger back to where he was before surgery.

Fun!!!!!!!!

Yesterday Bridger was taken off of CPAP and put on high flow oxygen. He was feeling pretty good after a week of feeling terrible so he was in quite a playful mood. So we got out our playmat and Bridger, Danny and I played on the floor together. While we were down there one of our favorite nurses, Susan came by and said that she had to get some pictures of us. So thanks to her we have our first family pictures since mid-November. As for today, we were supposed to go to surgery today to have a central line placed, but due to his blood thinner we have to wait. So we are hoping to go on Wednesday. So I guess we will just have to play for a couple of days, darn!

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.

A request.......

As we have been here at the hospital, many people have asked if they can do anything to help us. Well I have thought of something that would be great. Last night one of the cardiologist told me about a Chinese (I think) belief that if you fold 1000 origami cranes, then your wish will come true. Well our wish is for Bridger to overcome this disease and live a happy & somewhat healthy life. I am asking anyone who would like to, to fold however many origami paper cranes that you can to contribute to our wish, and please send them to us or our family so that we can work towards our 1000. You can find origami paper at craft stores and instructions on how to fold online. This may sound silly to some of you, but if it helps we are willing to do anything. They are still going to discuss his case in cath conference this morning, so wish us luck! I'll let you know.

Change of plans

So a few things have happened since I last posted. Bridger had an echo on Friday, showing that his pulmonary pressures are still high. He had an okay weekend, other than he was vomiting alot (which we were worried that was a sign of poor heart function). Yesterday was a rough day for me. This hospital stay really caught us off guard this time, for the first time, Bridger got to be a real baby at home. He was sleeping without discomfort, eating without discomfort, playing without becoming easily exhausted, basically doing all of the things that he deserves to do. So when he turned blue and ended up in heart failure again it knocked me for a loop. So I had some discussions with the doctors yesterday, and again today about the long term outcomes and plans for Bridger. His case will be discussed in cath conference on Wednesday because there are so many different opinions regarding his health, so this way all of our physicians can be together in one room to give their input. Also on Wednesday, I will be meeting with the heart failure team and the heart transplant team, and they will evaluate Bridger for possible treatments. So the plan for the next two days is to maximize his medications in hopes to help his pulmonary hypertension.

Cath Lab

Bridger was able to go to the cath lab yesterday, where the function of his different vessels were checked. The squeeze of his heart looked okay, but he does have increased pressures in his lungs. This is probably from the damage his lungs sustained when he was so ill back in Nov/Dec/Jan. So the next step is to try some medications to help treat his pulmonary hypertension. The hope is that this will buy him some time to help strengthen his lungs. So no real big changes today, just some medication adjustments.

ROUND 4

For those of you who don't already know, Bridger is back in the ICU. Yesterday morning Bridger turned blue again, only this time was for about 5 minutes ( last time was two 1 minute spells) and so we went on Bridger's first ambulance ride back to Primary Children's. When we got here, he looked considerably better. They did the usual; labs, x-rays, and an echo. However this time things didn't look very good, his heart is failing again, and they are not sure why. So he was readmitted to the PICU. Right now the plan is to go to cath lab, where they will go into his heart through his vessels and try to find the problem. No one will really say what our options are until they can narrrow down the problem, so now we wait. Hopefully we can get into cath lab today.

IT JUST ISN'T FAIR

I talked to Angela (heart mom) today and she told me that she was notified that Dr. Hawkins (the surgeon who did all of her son's surgeries) has been diagnosed with pancreatic cancer and has three months to live. This is the man who for years was the only person who could perform the life saving surgeries that our babies have needed. He has retired effective immediately from clinical duties. Angela and I are trying to call together anyone who has been touched by Dr. Hawkins to please get a hold of me and let me know if you can send me some pictures or letters that we can compile together and give to him in thanks for all that he has done for all of our families. This is truly devastating to all of our heart families, so anyone who has something for him just post your info and I will get a hold of you.

Jumperoo

Well we are still home and loving it. Bridger is discovering all of the toys he hasn't been able to play with the last few months. He rolls onto his tummy now, he chews on everything in sight, and loves to bounce in his jumperoo. He is smiling and laughing and doing all of those sweet things we never thought we would have a chance to see. We are so grateful for every moment we have with our son!