Moving On

Sorry it has been awhile since I have written. So much has gone on. We are half way through our move and after a few days of going sideways, Joseph is moving forward. It took many adjustments but Joseph is doing much better. When he does better---his parent do better. Let me back up to a turning point on Tuesday.

On Tuesday evening I was ready to just unhook his tubes and take him home. The frustration of not seeing improvement and the lack of clarity as to why he was not improving, was getting to be overwhelming. Also, by Tuesday evening, it was clear that he was not coming home for at least a week. His electrolytes were still out of whack, he was still breathing rapidly and his heart rate was elevated. On the monitor above his bed it gives a constant read out of his heart rate, respiration rate, blood pressure, oxygen saturation and carbon dioxide level. Being a techie person, I have become obsessed with watching his "numbers." The doctors who only see him in short spurts during the day look closely at his lab reports and his charts. The nurses are the ones who constantly say "don't always look at the numbers---Look at the baby!" They are trained to look first at the baby when an alarm goes off. It is the nurses (and Mary) who pointed out that since Sunday Joseph looks better. And that is true---Joseph looks better. The system at Children's is set up so that the nurses have a strong input in the care and decision making regarding Joseph. There are three doctors during the day who consult and discuss with the nurses regarding the children in the NICU. It is interesting to watch. The nurses are on duty for 12 1/2 hours and they see the trends and often have the best information on the baby. The doctors write up the orders but it is almost always the nurses who carry out the orders. They see how the babies react to medicines and treatment. Don't get me wrong -- the doctors are great---but they are great doctors in part, because they listen to the nurses, parents, respiratory therapists and other caregivers.

On Tuesday evening it was the nurses who said "enough." The doctors agreed. The parents, after having it explained three times, agreed. (OK OK--Mary once and me three times) Time to make things easier on Joseph. They would put in what is called a "PICC" line. A PICC line is a more recent development using a line which is inserted into one of the large veins in the arm (usually near the bend of the elbow) from where it is threaded into the superior vena cava. (it goes through the arm and up towards the chest) The initials PICC stand for peripherally inserted central catheter. This is necessary because the heart medications were making it nearly impossible to put in standard IVs. The IV on Tuesday afternoon took four tries. An IV on an infant only lasts a few days at best, but a PICC line can last a month or more. The PICC line was put in Late Tuesday evening and since then Joseph has steadily improved. The PICC line lets them put in more nourishment to help him grow and to balance his numbers. He is currently getting two types of nourishment through the PICC line and Mary's milk through an OG tube. This combination is letting him gain the weight he needs for surgery. When I saw Joseph Wednesday evening he looked much better and all his numbers had improved. After being fussy like a regular baby and after a diaper change he fell soundly asleep in my arms. A small slice of heaven for a frazzled dad.

Where do we go from here? We did get word yesterday that his heart condition is getting worse sooner than expected. It is increasingly looking like he will not come home before he has heart surgery. We hope to get some news on this shortly. The time is coming to start gearing up for that surgery. We are not ready for that yet but with all the support and prayers and love that is surrounding our family, we will be.
Peace
Kenny

p.s. I know I promised pictures but they are on the computer that is packed away. Tomorrow for sure.