He had another scary low heart rate drop the other night, so the next morning (after watching the pulse ox for the rest of the morning) I took him to Shands with my loyal hospital companion, my mom. =) ( Marcus would come in a minute, but my man works his butt off, has so much to do for our family so unless it is an emergency I tell him to stay in Jax to get his work finished! Love you and I thank u for that, hunny!) They decided to monitor him, but didnt see anything wrong, which was to be expected. The only time his heart did this CRAZY low dropping (like in the 20s) is when he is in REM, which he never got the chance to do with vital signs taken and beeps going off all through the night. So he had an EKG, which looked good, and then an ECHO. I waited anxiously for cardiologiest to come around and by 2 she was in our room sharing the latest.
THey found a PDA, which normally is detected/repaired during infancy ......but he will need surgery now. Here's a brief description for my "unfamiliar with heart problems" people: Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary (PULL-mun-ary) artery.
Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation.
Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns.
In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.
Oh! Guess what?? Im an "unfamiliar with heart problems" person too. I thought I didn't "do" hearts. I have to keep looking back so I can remember what PDA stands for! Camden supposedly had a great heart! Change of plans! I guess not knowing was a good thing looking back, (it wouldve been so much to deal with along with other issues) but on the other hand this should already be fixed. Especially by 3 yrs of age. Thanking God it hasn't done any damage ...that they can see of on the tests. Thanking God that I took him in and now know of this problem, although I felt pretty crazy up there.
The pulmonary hypertension reared his ugly face as well. THat was a word I NEVER wanted to hear again, but before the cardiologist came in, the assistants had came in and told me it was slightly elevated. Ok, normal in CDH, but it was supposedly gone in Camden and wasnt welcomed back. Im assuming the PDA is why it is back.
So the low heart rates? NOTHING to do with PDA. So, he is wearing a holter monitor to record rhythms tonight while he is his own bed, in a deep sleep, hooked to a pulse ox! I also didn't think I would ever have to worry about him sleeping again.
Maybe this was all a way to get me to go to hospital and find the PDA. I had no plans on going back to cardiology with the "ok" to do so last year! Im shocked and of course upset over my baby. Camden has enough surgeries to endure and didn't need another one. He has enough to deal with. I am a bit scared. PDA is considered one of the minor heart surgeries but a) if you are touching my baby's heart, that is not minor in my book and b) well, Camden's history says it all. But, this is something that has to be done and we have so much, so very much, to be thankful for. I am focusing on that and feeling very grateful for many healthy qualities of my boy! We will meet with the surgeon to discuss details in the next few weeks.
As for the nissen repair....that is now second on the "surgery list", although he just ate a pickle and a piece of ham and didn't choke. If the nissen unraveled itself, that would be nice. That would be WONDERFUL.
As for the retching over every tube feed...we are thinking it may be a soy intolerance. (he has milk allergy and has been on soy) I tested this out today with diluted juice and he did NOT retch. I should have know better and remembered that he could do this with soy, but honestly, I completely forgot being so focused on the mechanical things. I almost didn't want to type this part out because I know things change like the wind with his eating issues, but that is what it is today. I would love it to be a soy intolerance!!
He is getting over the sickness and is just left with a wet cough and on the mend.
He wasnt happy going to the hospital but it was a good time for him to learn trust because I promised him there would be no hurts and of course there wasn't. By noon today he was happy in the bed, making it go up and down, up and down, watching Yo Gabba Gabba, and demanding his Nana to do things. He thought he was a king. He also just told me he want to go to Wild Adventures and ride the dragons. He is walking around holding his heart monitor so it doesn't drag the ground. He is ok! =0)
Aw man! Big Hugs Devon!!! You guys need a break! But I am glad you have an answer with a solution. It's just yucky that the solution involves surgery =(. Many, many prayers for Camden. For a good, safe, easy surgery and recovery!!!
ReplyDeleteHugs,
Jennifer
Mom to Dakota 12-25-2008
aw hon... so sorry to hear of this new issue to deal with. will be praying for you guys. <3
ReplyDeletePraying for that little guy, and you guys too. He is on the prayer list at our church. Love you and miss you.
ReplyDeleteHey Devon,
ReplyDeleteRead the blog and know that none of what you mentioned is to hard for God to fix. It may take some time but God is still in the miracle working business. I look back and see what an amazing life Camden has. So many first and many more to come. Keep God's joy and peace in your heart!!! May His mercy and favor cover all of you, daily............