Friday, May 11, 2012

Dalton medical update post surgery #2

I feel terrible for my lack of writing but we have been quite busy this last month. I wanted to share an update of Dalton's health and give everyone an idea of what exactly has been going on.
About a month ago we found out that Dalton had severe pulmonary hypertension. I thought that this only occurred in old people but apparently babies with heart conditions are very prone to it as well. Pulmonary hypertension means that the pressure in the lungs is elevated and more blood is being pumped into them then should be. The Doctor attributed this to Dalton's ASD (atrial septum defect) which is the hole in the center of his heart. They prescribed Dalton some diuretic to help the fluid even out and sent us home. 24 hours after we started the new medication Dalton started vomiting and having really bad diarrhea. We were sent to the emergency room just in case he needed fluids for dehydration. When we arrived to the ER they did an X Ray and saw that his heart was swollen from the amount of fluid around his heart. We were immediately transported to Egelston and admitted. They kept Dalton for 4 days and really stressed that they wanted to wait to do the ASD surgery for him to get bigger. He stopped getting sick while we were in the hospital and we thought it had passed.

 As soon as we got home the vomiting started all over again. I held off taking Dalton to the hospital because we had a weekly cardiologist appointment in the next few days. I took him to the cardiologist and the Doctor looked at me and asked what had taken me so long to bring him in. Apparently, I wasn't seeing the deteriorating signs in my own son. His breathing was so heavy, he was sweating while he was eating (when we could get him to eat), and he began to look sunken in.

We were sent back to Egelston and they were not letting us go until this was all sorted out. The night we arrived Dalton had stopped eating by mouth completely so they placed an NG tube (a feeding tube to his belly like had after his first surgery). The testing all began and the GI issues were only getting worse. The Doctors wanted to get the GI stuff resolved before they started looking at his heart. We got the diagnosis of cardiac failure when we arrived so it wasn't just his heart but something else was underlying. We had scheduled for him to go into the cath lab so we could get a better idea of what was going on in his heart. Basically they put you under and send a wire into the groin and up through the veins into the heart, they can get a very clear picture about what exactly is happening. The day we were scheduled Dalton started vomiting up blood. His stomach was just so raw from throwing up so much and it showed us there were a lot deeper issues than just a stomach bug. So they re scheduled the cath until we could get the GI stuff figured out because they did not want to put him under with those type of problems going on simultaneously. The GI tests showed us that Dalton's body cannot absorb fats or proteins. They also determined he had a cows milk allergy. He was immediately put on TPN's and lipids, basically a cocktail of fats and proteins that was getting pumped directly to his bloodstream.  He went into the cath lab and they determined what they had suspected. The hole in his heart was allowing 3 times the amount of blood to be pumped into his lungs. We had to wait for his body to start responding to the TPNs and lipids before we could even think about surgery because he was just so weak. We tried 3 different types of formulas and they were being continuously dripped into his stomach daily. After about 10 days the vomiting finally stopped. Now that the GI issues were starting to sort themselves out it was time to start thinking about his heart.

Most children with ASD's do not need surgery for at least a couple of years because it does not start to show symptoms until then. Dalton's hole was so large and the pulmonary hypertension was so bad that the cardiologists determined that this surgery was absolutely necessary. The surgeon came to evaluate Dalton (same one from his first surgery) and was not convinced. The surgeon basically asked me what the point was if he had such a poor genetic diagnosis. He said that he did not believe that Dalton would do well after the surgery and could not promise a positive outcome. It was at that moment that my inner Mommy mode came out and I told him that come hell or high water I was going to give my son a fighting chance, like we have done his whole life. I explained to him that we didn't know how he was going to do after his coarctation but he did great, and I had no doubt he would be successful after this one. I am convinced we have a fighter on our hands and I knew that Dalton would continue to prove his nay sayers wrong. After several meetings and lots of advocating on Jonathan and my part, the surgeon agreed. I don't want anyone to think that Jonathan and I are surgery happy but in our heart of hearts we believed that this is what Dalton needed to help him start to grow and have an easier life.

We knew that we wanted Dalton baptized by our pastor, Bryan, and we had to make it happen before the surgery. We had a lovely little service and Dalton was declared a child of God the night before his surgery. It was perfect. Obviously I had never imagined having the service in a hospital chapel with an IV pole beeping during prayer but you work with what you can. The next day Dalton went into surgery and 5 hours later emerged with the hole in his heart all patched up. He did great! We were kicked out of our room and into the ICU we went. We kind of felt like old pros back in the ICU. Seeing him with all his tubes and being restrained was not a shock to us this time, but still nothing you want your child to endure. This surgery was through his chest so he now has one scar on his side and one down the center of his chest. Once he woke up in the ICU he was starving. He drank a 4 oz bottle! This had never happened before, ever. Already we were seeing an improvement. You could tell his breathing was so much easier and he was no longer struggling when he fed. It was like a brand new child. He only had to be in the ICU for one night! We were moved back to our home away from home in the step down unit where Dalton just kept getting better and better. The nurses who had been taking care of him just kept telling us how much better he looked. Everyone could see it.

We brought him home 4 days after his surgery and we cannot even express how happy we have been. He is just getting bigger and stronger each and every day. Last night, Dalton took 12 oz of his new fancy formula. 12! We aren't even upset about the lack of sleep we are just so thankful he wants to eat so much. The smiles and laughter started back a few days ago and we can just tell he is so happy to be home with his Mommy and Daddy. Today, Dalton has been working his tail off to roll over. I'm blown away! He hasn't got it quite yet but I think it will come soon. All Jonathan and I keep telling Dalton is how proud we are. He is one of the strongest little boys I know and such a fighter. Thank you for all of your prayers and support during this time. We still have a long road ahead but with our faith we will prevail.

7 comments:

  1. Best of love and greetings from Iceland to your wonderful little boy. You are a wonderful strong mother and Dalton is so lucky God placed him with you. Best wishes, Svava

    ReplyDelete
  2. I have been thinking of you all and checking your blog. Thanks for the update as I know it was probably not easy to squeeze it in! You do have a little fighter on your hands and good for you for being your child's advocate!! You will continue to be in my prayers! Tell Katherine "hello" for me as I noticed she is no longer on Facebook. :)

    ReplyDelete
  3. I am so glad that Dalton's surgery went well. I think about you all alot and have been praying that all is well. You have such a strong little boy!

    Melissa (from Northside)

    ReplyDelete
  4. I am so happy to hear that Dalton is doing so well! I have been reading your blog for a few months. I have a 9 month old boy and every night we say prayers and pray for Dalton's heart. Dalton reminds me a lot of my baby Aiden and I find you're strength and faith really inspiring. Aiden is also allergic to milk! We will continue to pray for Dalton. He is a strong boy and I'm sure he will just keep getting stronger.

    Vanessa (from Miami)

    ReplyDelete
  5. Hi, I'm from NC and my son Luke also has a heart defect and pulmonary hypertension. I actually had to come to northside hospital in Atlanta to have him in sept 2010 because of his heart defect. I'll be praying for Dalton and your family :-) you can follow my sons page on facebook called pray for baby luke or my page Rebecca Mundy Price. Hugs from NC :-)

    ReplyDelete
  6. A patient needs a doctor who truly listens to his or her patients, because a doctor who actually listens to the questions promotes an environment in which you feel capable of discussing the questions and concerns plaguing you.
    telemedicine

    ReplyDelete
  7. Hi Kara. I am so glad to know that Dalton is back home and feeling better. Thank you for taking the time to update his status. Dalton and your family are truly in mine and Kyle's prayers. "I can do all things through Christ who strengthens me."- God has given you, Dalton and your husband amazing strength. God Bless :)
    -Lindsey Leist

    ReplyDelete