Happy Friday! I am so sorry it has been so long since we have updated Caleb's blog. Life has been crazy the last couple weeks, to say the least. I was having my own medical issues last week, but thankfully it has resolved itself and surgery was not necessary. Thank goodness!
Caleb is doing well. He was seen by his cardiologist last week and he thought he looked good. His oxygen was 94. As crazy as it sounds, it is high for Caleb's heart situation, as the Dr. would like it to be in the 80s, but it will get there. He will eventually grow into this shunt that they put in, so his oxygen number will not be so high and there will not be so much blood flowing from heart to lungs as he grows into the shunt. The shunt is buying us time until he has his "complete repair" sometime next year.
Yesterday, Caleb saw the surgeon for them to check his incision again. The surgeon thought it looked great and he did not need to see him again, unless we have any concerns that arise. YEA! One less Dr. off of the check-up list! He said he could even take a bath now too. Up until this point he has only been able to have spit baths! Can't wait to let the boy splash in his little tub!
He was seen by his home health nurse for the second time today. He is up to 9 lbs. 7 oz. which is not a great increase from last week, as he only gained 3 oz. from last Monday. We are trying to increase his feeds a little bit, so hopefully that will help. Just concerned that the increased feeds will irritate his reflux more. Frustrating to say the least. Although, the nurse did say he was such a different child from last week, much more awake and less irritated when he is awake. He even cooed at her a couple times. So clinically he looks great...just his weight is the concern. I was hoping since he has been so much more awake and alert over the last week, it would count toward the number of calories he has probably spent, leading to a smaller weight gain, but the nurse says not so much. His eating/drinking from a bottle is where he spends most of his calories. We changed his NG tube as it has been a month since it was put in as we were leaving the hospital. Of course, we were given the wrong size by our home health care supply company. The tube is 14" longer then the last one!! So now the home health care company is sending us the proper size, but now I will not have the nurse to help me change it. :( Bleh!! This 36" tube is just crazy long and ridiculous, so there is no way we can live with it like this. So now we will have to change it ourselves. Prayers would be greatly appreciated!! ;) We can't wait for the day that Caleb will not need to finish his bottles via this tube! It is so easy for us and Caleb to get tangled up in it, so we look forward to the day that Caleb can drink his entire bottles consistently and the tube can go!
I am still looking for a routine that works for us. It is overwhelming in the afternoons with trying to figure out how to help Ryan with his 4th grade homework, keeping Sara out of his hair, feeding Caleb, etc. The word "multi-tasking" has taken on a whole new meaning for me! I can't wait for the day that it is not all so overwhelming. We are so thankful for each and every meal that families have brought for us! We would probably not have been fed otherwise. :) From the meals, to the calls and messages of encouragement, to the prayers said by each and every person, we could not have made it this far without each and every one of you!!
Thank you SO very much!
Joanna & John
No comments:
Post a Comment