Last week Xyler's cardiologist called to let me know what they had decided to do for him. They believe that a trip to the cath lab should work. What a relief this was for us, that Xyler will not have to go through another open heart surgery right now. I just couldn't bare the thought of him going through that for the 3rd time in only less than 14 months. What they will do instead is go through an artery with a catheter and balloon the area that is narrow. They will see if it will hold after they stretch it out. If not, then they will put in a stint. This is still a dangerous procedure but a much less evasive one. If Xyler is one of the first one's for that day and all goes well, then he should be able to go home that same day. If he has it done in the afternoon then he will have to stay overnight.
He goes in on the 20th for this procedure. What a busy, stressful Christmas this has already been for us and still will be. I just hope I can get everything done that I need to before the 20th so that I can just worry about taking care of Xyler and my other kids after. We are just having a nice Christmas at home since we don't want to take Xyler anywhere. We are pretty much home bound throughout the flu season anyway with Xyler. His little body seems to catch everything and it has a harder time getting over sickness too. We love when people stop by to visit but ask that anyone who is sick to please not stop by while you are sick, or if anyone in your family is sick. Thanks!
This year money is super tight for Christmas. It seems like everything just wants to go wrong for us and we can't seem to get our heads above water. If anyone has any good helpful ideas or tips on Christmas gifts that don't cost much I am all ears. I really want to get my shopping done by next week but have only done a little bit. I am getting my tonsils out on the 26th so I am really trying to have everything super organized since it is such a busy month for us. I would have held off on getting my tonsils out because of what we are going through with Xyler, but my deductible is met so it will be so much cheaper to get it done now. I guess the bright side of it, is that I will hopefully lose all of the holiday weight and a little bit more. :)
I am asking anyone who reads this to please pray for my son and our family, but I also want to ask you to please pray for my friend and her son. He was born 15 weeks early back in January and was in the hospital until Sept. He has some health issues so he needs constant care. He has also had a few eye surgeries but they were not able to help one of his eyes, so he is blind in that eye. My friend just found out, by her being insistent on them running more tests since she was listening to her mommy instincts, that he has 3 huge tumors on his liver. He is starting chemo and they have put him on the transplant list. Please pray for this sweet boy, his mom, and his family. His name is Easton and he is a little cutie. They have been through so much already and my heart just aches that they are having to got through this too. I love them dearly and pray that Easton will get the care that he needs and that his body will grow strong and healthy.
I am really having a hard time with how so many kids have to go through so much. It is so hard as a mom to have to watch your child suffer and to not be able to do anything about it. I hate the overpowering feeling of such helplessness. I wish we could just kiss these "owies" away. I know that there is a reason for everything, I guess I'm just struggling with the not knowing the reason while it is happening. If only we could look down the road and see that things will be for the better, but I guess we would never learn and grow if we were able to get a peak of the future all of the time.
My kids are super excited for Christmas and we are trying to do fun things for it. I admire and love all of my kids and am so proud of each one of them. Xyler has been through so much and has shown so much strength in his first year of life. My other kids have also been through so much and have shown strength also and so much love and concern for their baby brother. I have felt like such a failure of a mom this year because it has been so hard for me to divide up my time with all of my kids. My oldest two are the ones who end up with the short end of the stick. They are amazing kids and thank goodness they love me even with all of my faults. I love my hubby and kids so much and am so grateful for them!
Monday, December 10, 2012
Wednesday, December 5, 2012
The last few weeks we started to notice Xyler having some symptoms that were concerning. A couple of weeks ago we decided to take him down to Primary Children's(PCMC) ER and have him checked out since they have a cardiologist on call. It was my hubby's weekend off and that is why we decided it would be a good time to take him. Xyler had been acting different and had become whiny and clingy. His face started looking puffy so I was worried that he was retaining fluid. My hubby fed him a bottle on the Saturday that we took him to the ER, and he started sweating while drinking it. These are all not very good signs.
At the ER they took an x-ray and compared it to his last one, which was in September. They said his heart looked the same so they contributed the symptoms he was having to the cold he had at the time. When they weighed him it showed that he had gained over 1 lb in less than two weeks. I know this because he was weighed at his 1 year check up less than two weeks before. They sent us home and told me to follow up with his pediatrician and his cardiologist. I left there feeling uneasy. I tried to tell them how that was a HUGE weight gain for him since he hadn't even gained a full lb from Sept. to the beginning of Nov.
The following Monday I took him into his ped. and he did not like the weight gain and did not want to contribute it to him having a cold. He ordered an x-ray and some blood work. He also talked to Xyler's cardiologist to see if there was anything else he wanted done. The BNP blood work was elevated. I was told this meant that he had congestive heart failure. We put Xyler on Lasix to help with the fluid he was retaining and then we had to wait over Thanksgiving weekend until we could find out what his card. wanted to do next.
The Monday after Thanksgiving I talked to his card. and we set up a day to take him down to PCMC for an echo and then meet with him. Xyler had the echo yesterday. We found out that there is a problem. The Pulmonary valve that they put in at his last surgery in June, was narrowing where it connected to the pulmonary arteries. They figure it is from scar tissue. This may be something they can fix in the cath lab by ballooning the valve and putting in a stint, or he will have to have open heart surgery to fix it. His card needed to talk to his surgeon and the cath lab today to see what they think will be his best option.
I am hoping to find out today their decision. I am going crazy while waiting. Either option is scary but the cath lab is the easier route. I am just hoping for good news. It is so hard to have to watch my child go through this and feel so helpless. To have to hold him still while they try to put in an IV and have him screaming the whole time. I can't bare the thought of Xyler having to go through another procedure so soon. At his last card appt. back in Sept. things looked good and we were planning on an echo in the spring and then only yearly visits after that until he needed his next surgery. I just want my child to get a break. To get to be a normal child with his heart working fine with no problems. You wouldn't think that would be too much to ask for but in the heart world it seems like it is. It is so hard and sad to see so many heart kids who have one issue after another. These kids go through so much and are so strong. I admire them for their courage and strength but I do wish that they wouldn't have to go through so much.
One thing we can learn from what we have gone through with Xyler is to make sure the doctors are thorough. I am so thankful for his ped. doing more to make sure nothing was missed. If this wasn't caught so many other things could have been damaged because of it. I am thankful it was caught and can be fixed. When we find out how it will be fixed we will go from there. PLEASE...let them tell us soon. I hate the waiting!
At the ER they took an x-ray and compared it to his last one, which was in September. They said his heart looked the same so they contributed the symptoms he was having to the cold he had at the time. When they weighed him it showed that he had gained over 1 lb in less than two weeks. I know this because he was weighed at his 1 year check up less than two weeks before. They sent us home and told me to follow up with his pediatrician and his cardiologist. I left there feeling uneasy. I tried to tell them how that was a HUGE weight gain for him since he hadn't even gained a full lb from Sept. to the beginning of Nov.
The following Monday I took him into his ped. and he did not like the weight gain and did not want to contribute it to him having a cold. He ordered an x-ray and some blood work. He also talked to Xyler's cardiologist to see if there was anything else he wanted done. The BNP blood work was elevated. I was told this meant that he had congestive heart failure. We put Xyler on Lasix to help with the fluid he was retaining and then we had to wait over Thanksgiving weekend until we could find out what his card. wanted to do next.
The Monday after Thanksgiving I talked to his card. and we set up a day to take him down to PCMC for an echo and then meet with him. Xyler had the echo yesterday. We found out that there is a problem. The Pulmonary valve that they put in at his last surgery in June, was narrowing where it connected to the pulmonary arteries. They figure it is from scar tissue. This may be something they can fix in the cath lab by ballooning the valve and putting in a stint, or he will have to have open heart surgery to fix it. His card needed to talk to his surgeon and the cath lab today to see what they think will be his best option.
I am hoping to find out today their decision. I am going crazy while waiting. Either option is scary but the cath lab is the easier route. I am just hoping for good news. It is so hard to have to watch my child go through this and feel so helpless. To have to hold him still while they try to put in an IV and have him screaming the whole time. I can't bare the thought of Xyler having to go through another procedure so soon. At his last card appt. back in Sept. things looked good and we were planning on an echo in the spring and then only yearly visits after that until he needed his next surgery. I just want my child to get a break. To get to be a normal child with his heart working fine with no problems. You wouldn't think that would be too much to ask for but in the heart world it seems like it is. It is so hard and sad to see so many heart kids who have one issue after another. These kids go through so much and are so strong. I admire them for their courage and strength but I do wish that they wouldn't have to go through so much.
One thing we can learn from what we have gone through with Xyler is to make sure the doctors are thorough. I am so thankful for his ped. doing more to make sure nothing was missed. If this wasn't caught so many other things could have been damaged because of it. I am thankful it was caught and can be fixed. When we find out how it will be fixed we will go from there. PLEASE...let them tell us soon. I hate the waiting!
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