A new day

Yesterday they tried to extubate Bridger, he was on CPAP for 2 1/2 hours and was really struggling. He was re-intubated and it took a bit for him to relax, but finally he was able to. We are still not quite sure what happened yesterday or even on Monday. Today the plan is just to give him a good rest and see how it goes from there. Yesterday all of our paperwork was sent off to Stanford, so we will see how this next few days to week goes and if Stanford agrees that it is worth evaluating him, then we will see if Bridger feels like he is up for this challenge.

New plans!

Today has been a very stressful and emotional day. It looks as though we have reached the end of our rope in terms of options for Bridger's medical treatment. Today Danny and I have actively made our request to have Bridger reviewed as a candidate for heart/lung transplant. We have chosen Lucille Packard @ Stanford in California. The head surgeon there was the one who performed the first successful heart/lung transplant in 1985. This is also the closest location for Danny to get to us in case of emergency and the Ronald Mcdonald house there had a specific wing for us to live after the transplant. This is a big decision for us, but we feel that our beautiful son had not yet told us that he is ready for us to just take him home and let him die, so we are going to give him this opportunity to hopefully do the things that babies and toddlers should be able to do. Our paperwork is being submitted and if Bridger is a candidate he and I will be moving to California in the very near future. Please keep your thoughts and prayers with our sweet little man.

Another scare!

We are back in the PICU, yesterday as we were getting ready to come to our cardiology appointment, Bridger turned blue again. He was have a terrible struggle trying to breathe, so 911 was called and off we went. We got to Primary's just in time where Bridger was intubated and moved back into the ICU. It took some time, but they were able to get him stable (as stable as Bridger can be) he is sedated, but at least he is not as stressed today. He is getting a blood transfusion right now, which he always likes, and we are trying to dry out his lungs. So for now it is just the wait and see game again.

Home again!

Sorry I am a little behind again on posting. We are home! It always takes a few days to get settled again, but we are loving it. Bridger is now home on 3 different ICU- only pieces of equipment, but we are so grateful because otherwise we could not be home. So far he seems to be doing okay, usually our first few days home he spends catching up on sleep which is good for him. It is too hot right now for us to go walking outside, but maybe when I get a little more situated we can go at the mall before it opens. We hope you are all doing well. We miss you and love you!

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.