10:35PM 8/11/14 Update click to collapse contents Well, at rounds this morning, the attending physician decided that was enough, Jaden was doing great and it was time his actions started to reflect it. So, he said Jaden was not to lay in the bed today except for one nap and then at bed time and he was to walk around. So, Jaden spent all morning in the rocking chair in his room. He was so nervous and became quite anxious, worried that he was going to be in pain. The pain never hit as bad as he thought it would be, but he was really exhausted. Then he was allowed to take the nap and the big challenge came. He was told they wanted him to stand up, hold onto a wheelchair for balance and walk down the hall. AND HE DID IT!!! We were so proud of him and so many people in the hallway that saw him were cheering for him. It wore him out, but he made it down the all and back. We also lost a lot of wires and meds today, we are down to 3 lines. We posted pictures of him sitting in the chair and walking in the photos section. The pictures walking do not reflect him being in pain, they are just silly faces he was making. Medically, tomorrow will be a big day. At noon, Jaden will go in for a cardiac catheter for two purposes. Of immediate importance is the flow in one of his valves. There is a lot of conflicting opinion about it. The tests say thing, the echo pictures say one thing, the monitors say one thing and the doctors say one thing. Tomorrow, in the cath they will determine how much obstruction there really is, if there is any at all and what the gameplan will be. They dont anticipate doing anything right away because he is doing so well, but they just want to know for sure. We are praying they find no obstruction at all. The second purpose will be to measure for rejection. As I said yesterday Jaden will have at least two rejection tests per year for the rest of his life. For this month he will have one per week, then two per month, then every three months, then twice per year. This is a big step to determine how his body is accepting his new heart and to determine how they will handle the suppression of his immune system. Childrens handles their cases different than anyone else, we have learned they are unique, very aggressive and very successful thankfully. Rejection is measured on a scale of 0 (no rejection) to 4 (acute rejection). Rarely is anyone a 0, especially on their first test. This cath will also go a long way to determine when he might be released to go home. Please pray for the cath, it will be at 12:00pm EST. Betty and I are doing well, trusting that God did not bring us this far to leave us now. We are also excited because the girls are coming back tomorrow and we will all be reunited. We are so thankful for family that has been caring for them for the past week. One final quick thing, please pray for Grayson (11 month old that had a major heart surgery today) Willie (a baby that just stops breathing and they dont know why), Gabby (a 9 year old with developmental struggles), Hudson (4 month old having serious heart surgery) and JT (a 9 month old having his 3rd heart surgery). These are the children of families we have met with here and had the opportunity to talk to. -Grayson
Posted on: Tue, 12 Aug 2014 03:04:21 +0000
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