Sooooo close....again

Well we were supposed to go home today, however, Bridger's body did not agree with that plan. He started declining again the last couple days, he was taking on more fluid and the amount of blood thinner in his body is too low. A few kinks that must be worked out in order for us to go home. They have put his back on IV diuretics and had to start a heparin IV until his coumadin is in his body enough that his artificial mitral valve won't clot off and have to be replaced. He has also been vomiting more over the past 36 hours, sometimes even vomiting his meds which doesn't help anything. I guess we will just sit tight over the weekend and re-evaluate on Monday how everything is going.

Art project day

If you have ever been to Primary's you may have seen the different art work on the ceiling tiles, they have been painted by patients in the hospital. Well whenever we are here I always wish that we had one for Bridger. Yesterday I asked our child life specialist if Bridger had earned the privilege of painting one and she said yes. This is our tile that will go on the ceiling at the cardiac end of the PICU. The seaweed and the fish are made with Bridger's hand and foot prints. He didn't care much for the hands, but he was giggling when I painted his feet with the paint brush. Hopefully none of you will ever be in the PICU, but if you are, make sure to look for Bridger's tile. As for everything else, we are still working toward getting home this week. I was trained on Bridger's new pump and how to mix his new medicine yesterday. The pharmacy will also come again when we are discharging and have me mix it again in front of them before we can go home. Bridger is back on his oral diuretics, so they are working to get his high flow oxygen back to the level we were using when we came in last week.

The plan....

The echo results on Friday showed an improvement in Bridger's TR gradient (indicative of his lung pressures) from 60 to 51. Over the weekend the Flolan dose was slowly increased and his Milrinone was slightly decreased. After Saturday night, he seemed to tolerate the dosing. On Monday, one of his diuretics was changed back from IV to oral and today the other was changed. If Bridger tolerates this well, we will hopefully be heading back home soon. The specialty pharmacy is coming today to teach me how to mix his Flolan (it is only stable for hours after being mixed) and I will also learn to use the new IV pump. A few things on the board this week.

Okay, this is going to be a big one! I have been lazy on keeping up with the blog for the last month, so here we go. Starting with the newest news. They tried Bridger on the Flolan again yesterday, beginning with a smaller dosage and working our way up. His x-rays remained unchanged through the night, and he even seemed a little more comfortable. This morning they are increasing the dose again and will do an echo to see if the flolan has improved the pressures in his heart and lungs....here's hoping. Our sweet boy has not told us that he is done playing with us, so we are continuing to explore all possible options for him, one of which includes a heart-lung transplant. If the flolan and other medicines do not help and we choose this option, Bridger and I would be moving to a hospital that performs this surgery(probably Stanford Children's-San Francisco) to wait for a transplant. We have not done the work-up to be listed, but it is an option that we are checking into. As for Bridger he is still his sweet self, smiling with his CPAP on, laughing and playing during his assessments from his doctors and nurses. He is still growing, he sits up without support, he rolls all the way over and grabs everything in his sight. He is very strong and continues to amaze me everyday. Thank you for all of your support, thoughts and prayers. We hope you enjoy all of our new pictures.

Two teeth have already come through on the bottom, and two more are working their way out.

A little tummy time with my CPAP on.

Aunt Jessica is in town and she came to take pictures of our family.
We always hang out in Mom & Dad's bedroom, so what better place to take our pictures.
Daddy is trying to get me!

Let me play with that....

Daddy and Bridger just hanging out watching TV, we love sportscenter

I loved being home!

Mom, not in front of the camera!

Remember all of those noisy toys mom told you not to get for me,

well now she looks specifically for things that I can be noisy with.

Here is my tambourine.

well......

For those of you who don't know, we are back at the PICU. On Saturday, Dr. Day called and said that he would like us to check in on Monday in order to try a new medication for Bridger's pulmonary hypertension. So after our clinic appointment yesterday, we were readmitted to the PICU and Bridger was started on IV Flolan. As the night went on Bridger's breathing only got worse and on this mornings x-ray it showed that he had a lot of extra fluid in his lungs. That is one of the side effects of this drug, but we were hoping he wouldn't take on so much fluid. So this morning, the Flolan was stopped and Bridger was put on C-PAP to help his lungs. For now, the plan is to try and dry Bridger out and then reassess from there.

Echo results

Sorry I didn't post sooner, we got the echo results Monday but I didn't talk to the doctors about their plans until yesterday. On Bridger's echo from Monday it showed that the medicine he was started on last week did not make any improvement in his lung pressures. So yesterday when I spoke with two of the cardiologists, they thought it was best to try one or two more oral meds to see if anything changes, and if not then we will try an IV medication to see if that helps. The downside to the IV med is that it can relax the lungs enough that they are not able to protect themselves from taking on fluid, so that would have to be monitored very closely. On Friday I will take Bridger back up for some more blood tests and probably next week he will start a different medication to help his lungs and heart.

Home again!

Bridger was started on a new medication Friday night. On Saturday morning, our pulmonary hypertension specialist called the hospital and said that if Bridger's blood pressure was stable then we could go home Saturday and come back in Monday for testing to see if the medication was helping. That sounded great to us! And since we have our own ICU at home we can pretty much do all of the same things without being at the PICU. So we came home Saturday afternoon, and we will go back in tommorrow to see if this medicine has helped.

Cath lab

Well Bridger made it through cath lab. There were no changes in his pulmonary pressures from two months ago, so they tested some medications again. Bridger also had a CT scan of his lungs to check for any other pulmonary disease that might be causing increased pressures, but there was none. He does have an obstructed pulmonary vein in his left lower lung that is contributing to his struggles. So the plan for now is to try one of the new medicines to see if it helps, they will do another echo in a day or two and we will go from there. So this isn't the quick overnighter we were hoping for, but we want what is best for Bridger.

Just an overnighter

We got to come back home after just one night. Bridger had a blood transfusion and a few doses of IV diuretic yesterday. The doctors said since we pretty much have our own ICU set-up at home that we could do the rest here. So 26 days at home and 1 overnight stay in the ICU, we'll take it.

Our summer home too?

Bridger had a bit of a struggle over the weekend, that continued Monday at our cardiology appointment. He had been vomiting more and more since Friday, and his breathing was getting worse. While we were in with our doctor, he decided that we should be admitted for a "tune- up". PICU here we come- AGAIN. So we are back. Cath lab is still scheduled for Friday, so our plan is to maximize Bridger's diuretics, give him some blood and hope that he is going into cath in the best shape he can be. For now it looks as though our winter home may also double as a summer cottage, but hey we'll take it if it keeps our little boy happy!