Graham came home from the hospital on April 28, 6 months from his first admission last October. We are so thrilled and give God all the glory. This is such an answer to countless prayers! Graham came home in an ambulance to ensure a safe and uneventful trip. When we arrived our house was buzzing with nurses from the nursing agency, people from the DME (durable medical equipment, supplier of all medical equipment and supplies), and my parents and the twins.
We have 24/7 nursing for the first four weeks and then probably around 18hrs/day after that. This is a huge help. Matt and I are knowledgeable and capable of caring for Graham but he requires so much care that we need help in order to get everything done and eat and sleep and peek at the babies. The nurses measuring out all of his medicines is a blessing alone. Graham has been accepted into the CAP/C program which gives him Medicaid as a secondary insurance based on his medical needs and Medicaid covers the nursing! The idea of the CAP/C program is to provide support to families to care for a medically fragile child at home who otherwise would have to be institutionalized. So thank you tax paying friends for allowing us to function at home as a family!
Things have been ridiculously busy. We are trying to figure out daily routines and find a place to put all the equipment and supplies. We have a lot of different nurses to cover all the hours right now and so we are constantly orienting them and gauging their competencies. Eventually we will have more regular nurses who will be familiar with Graham and his care and that will allow Matt and I to relinquish a little more responsibility. Our parents are still helping out quite a bit and we still have the part-time nanny for the twins.
Graham is so happy to be home! His energy level and physical stamina have gone through the roof since coming home. He is pulling up and standing and attempting to walk. We are constantly untangling his lines and following him with the ventilator. We are going to be in trouble once he is walking again. He is enjoying interacting with the twins.
Thank you for all your prayers over the last several months! Please keep praying for Graham's health and recovery.
 |
| Graham's ride home. The last time he was in there he was on the way to Duke on ECMO. Much more joyous occasion today! |
 |
| He's home! |
 |
| Enjoying toys he hasn't seen in a while. |
 |
| First time in a bath tub since February! He loved it. |
 |
| All our babies in one place! |
 |
| First ever family walk! One double stroller for the twins and one for Graham and his gear. |
 |
| I see you! |
 |
| This is how he rolls. |
Stroller info in case its relevant to you:
Its a Graco Ready2Grow which is similar to the Sit and Stand but I thought it seemed sturdier. We hang the ventilator on the handlebars. The suction machine sits on the bench seat. The pulse ox and "go bag" are in the basket. We had to move the oxygen to the back step because it was too heavy for the basket. The feeding pump attached to the stroller bag and the feeding bag hangs on a stroller hook. That's about it.
