Dr. Nugent was able to put in both stints. I won’t go into details about how important this was, how risky and dangerous, but note that he saved our baby’s life. Jenifer and I were so happy. Sitting in the waiting room for 5 hrs was tough. Especially every time the door opened. Dr. G. was the one that gave us the news. She cracked the door and said it was a success. Best news we’ve ever heard. Hugs and kisses went around to all family members, intensivist, and surgeons. Most emotional high I’ve ever experienced. I think Jenifer would say the same too. We had some dinner and then proceeded to see Kaleb.
The next 24hrs would be some of the hardest hours my wife and I have experienced. When we got back to the room, Kaleb’s heart was in arrhythmia and beating very fast. For the next 12 hrs, the doctors tried to bring his heart rate down by any measure they could. At 2 am, they finally got the heart under control, but it soon went out of control again at 6am. During 7am rounds they gave him another medicine and it calmed him down. However, they put in so much medicine and fluid that his kidneys were failing and we had to have another surgery that afternoon to put in a drain line. Again, we went back to the room to wait. Neither of us ate or drank yesterday. We just sat by his side, each holding a hand. Dr. Fuch successfully installed the drain line and Kaleb started to bounce back. Dr. Nugent suggested installing a makeshift pacemaker to keep Kaleb’s heart in sinus. They installed that last night after putting in the drain line and he has been stable since then.
Jenifer and I both got some sleep last night. I got a lot more than she did because I went to another room and they did not wake me up to pump. The stress and lack of pumping has been a challenge for Jenifer. She is doing awesome and ounces will start flowing instead of mm. Kaleb did great overnight and everyone is giving 2 thumbs up this morning. However, his heart is still in arrhythmia and we’re not sure how long he can stay like this. They did turn off the pacemaker and he is holding.
For additional information: Kaleb is heterotaxy, which means his heart is on the opposite side of his body. The electrical circuits in the heart are not in there normal location and don’t “fire/spark” consistently. Therefore, he is at risk for arrhythmia (pumping chambers in heart not in sync) after surgery and stressful situations.
This is where we are at the moment. Both of us are extremely tired and have been on an emotional roller coaster for almost two weeks now. I can’t believe that we have been here for 10 days. I’m not wanting to go back to work on Monday. Hopefully, Kaleb will get his heart rhythm under control and we can start the long journey of gaining weight. Currently we are in room D3216 (they like to play musical rooms. This is our 3rd room since we arrived in the CVICU). He has all his stuffed animals from home watching over him. You can send us gifts, stuffed animals, cards, balloons (no latex), etc. But we are still limiting visitors. Jenifer and I have to wear gown, mask, and gloves in the room because Kaleb tested positive for the rhino virus (common cold). It’s fun sleeping in a mask…
We love reading the posts on facebook and on our blog. Please keep them coming!! We also appreciate everyone who has added Kaleb and us to your prayer groups and churches. Your prayers and well wishes have both sustained us and been instrumental in Kaleb’s continued fight for life. We are so grateful to you all! Both sets of our parents have been here by our sides the entire time! Jenifer and I can’t thank them enough! Their willingness to come to the hospital at all hours of the day and night, desire to stay entire nights with Kaleb and us, and display of constant love and support has amazed us. Our sisters have also gone out of their way to be here and to support Kaleb through prayer, and spreading the word about him to hundreds who are now praying for him-thank you! We also want to send out a special thank you to our nurses: Katie, Sally, Justin, Liz, and Leslie for the hard work they’ve put in! We can’t wait to fill out their Kudo cards, and there are definitely some JD Chippery cookies in store for them. We also want to send a special thank you to Dr. Koch. He has invested so much time into Kaleb and has become our number 1 go to guy. Every person in this facilty is great and we thank them all, as well has every person out there that we don't know who is praying for our little one!!
Kaleb has just now settled down and has been in time out for the last couple days, so we have not been able to post. He’s being a little ornery, just like his parents. But I hope to add more this afternoon/tomorrow.
As I finish writing this, Kaleb has gone into sinus rhythm (correct heart rhythm). Yes, Yes….YES,YES,YES!!! And so it continues…
Karl
Mom and Dad with Kaleb, good day!
Saying hello
Playing Peek a Boo
In February 2009 my brother and sister-in-law lost a baby girl at 20 weeks, and the doctors were able to keep her twin sister in utero till 24 weeks. So Izzy was a micro preemie and spent 4 scary months in the NICU...she is thriving today but it was a long road. SO I know a *tiny* bit of what you are going through now. I am friends with Amy Kraus, who is neighbors and friends with your sister. Have been praying for you and following your news. KNow there are many like me that you don't even know that are praying and rooting for this sweet precious boy! My niece Izzy beat all sorts of "statistics" and I pray that Kaleb will too. Sincerely, Katie Kim
ReplyDelete