Wednesday, December 14, 2011

Recap from our day thus far

We got up at 4:30am to get to CHOP at 7am for a 8:30am catheterization. Cole had to be NPO from 5am this morning and was such a champ!! Cole was so good for the nurse he let her do everything she needed to do without crying. They gave him giggle juice to help make him a little loopy so that he wouldn't get so upset when they put his IV in. He only cried for like a minute when they put his IV in. All the nurses thought that he was the cutest thing!! Yeah, I agree... They took him back for his cath right at 8:30am. The team that took care of him through out the cath said that he was giggling and cooing all the way back to the cath lab. Little sweetheart!!! We got our first update at 10am. That's when they told us that they were having a hard time getting access. They must have gotten access soon after that because at 11am our next update they said they were ballooning his Left Pulmonary Artery because it was so small. At our next update at 12pm they took us into the conference room to meet with Dr. Gillespie. We waited there for a good 40 minutes if not longer... I was getting very anxious. Thankful the nurses came back and kept giving us updates. Dr. Gillespie got pulled for another emergency. The nurse then came in and told Ian and I to just come back and be with Cole because he was so upset. I walked in the room and they practically threw him in my lap to nurse. He was very groggy, but very unhappy. He nursed and nursed and nursed. He didn't want me to put him down. I held him for quite awhile. Finally, Dr. Gillespie was able to come in and talk with us. We didn't get the best news... but, it certainly could have been worse.... Cole will need to have another open heart surgery ASAP. I'd think soon after Christmas and as soon as Dr. Spray has an opening. If you remember from Coles first open heart surgery. Cole will not have his full repair this next surgery. They will need to cut open and patch his pulmonary arteries. His cath showed that his PA's are very small and they haven't grown almost at all since birth. There wasn't much that Dr. Gillespie could even do in the cath lab. He did balloon his left pulmonary artery some. There was concern that they had lost the pulse in his venous artery where they got their access from. Cole had to have a ultrasound so that they could get a better look and see if there are any blood clots. If there is any issues with either he will need to start lovenox injections for 6 weeks. I am praying there are no clots and that the pulse will come back on its own without needing to do the injections. Since they did some ballooning we need to stay overnight and should be discharged first thing tomorrow morning. Cole is back to his normal self except for when they did the ultrasound and had to press on his sore groin. Poor guy!! They gave him tylenol and I nursed him after they were done with the ultrasound and now he is sleeping soundly. We got to see both Dr. Natarajan (Coles cardiologist) & Dr. Loomes (Coles hepatologist- liver dr) Dr. Natarajan had suspected that Cole would need this surgery and Dr. Loomes just came by to see Cole since she knew he would be in. Cole had liver labs drawn yesterday along with his pre-admission labs. Dr. Loomes looked over his labs and she was thrilled to tell us that Coles liver is PERFECT!!!!!!! Praise GOD!!!!! That is the best news!!!! While I am sad that Cole needs to have another open heart surgery so soon I am also thanking God that there are surgeons that can fix things like these and that Cole is such a healthy little guy otherwise!!!!! Well, I need to wrap this up. Cole needs to go for an x-ray to be sure where they did the ballooning still looks good and that he isn't having any internal bleeding. We need to stay the night tonight which I came expecting to happen. Ian, was able to get a room at the Ronald McDonald House. Another praise. I called and they originally told me they didn't have a room and then the RMH manager called me and told me they did infact have a room!! Yay!! The nurses acted like they like to get everyone in the CPRU out of here by 10am!!!

Thanks for your continued prayers for Cole and us as we continue to walk this road of trying to get Cole's heart to funtion as normal as it can.

No comments:

Post a Comment