September 13, 2005
September 13, 2005 | Updates
SUMMARY: Today was full of training and trying to get all of the equipment Samuel needs at home. I missed his physical therapy session, but they said he wasn’t very happy so they didn’t do much with him. In fact, he wasn’t very happy all day. I’m not quite sure why. We did replace the splint on his right arm because the old one was causing too much skin breakdown. And then, of course, we’ve been saying our goodbyes. It’s going to be hard to leave tomorrow. This place has become a home away from home.DETAILS: Samuel had two wet diapers on his own this morning. The rest of the day, however, we had to catheter him. He also is still doing well on his bolus feeds. But he does spit up now and again, so I haven’t pushed him to increase the amounts or intensity of the feeds. He is still receiving a slow drip through the night to make up for what he isn’t getting during the day.
The splint on his right arm was giving him some red sores, so we remade it. I’m not too happy with the new one either because it doesn’t stretch his arm much and I’m afraid he’s going to loose the range we just got by casting him. But the therapists seemed to think it was OK.
I was informed yesterday that home care doesn’t provide cribs so I spent most of the day trying to find a crib that would work for Samuel. I finally called Tom and turned the job over to him. We also had a feeding pump and pediasure delivered to the hospital this afternoon. We are still waiting on oxygen, suction and a pulse ox at home. And I am going tonight to get a thermometer and blood pressure machine. We need to get all that in place before we go home tomorrow.
Another set back was when we were told this afternoon that the hospital doesn’t have a car seat Samuel can use. He is within the weight limit for a rear facing seat, but he is too long for one. And he is under the weight limit for the adapted car seats they have here that are forward facing. We would just use the one we already had, but it sits him straight up at a 90 degree angle and I’m not sure he can tolerate that now. So I will be looking for a forward facing car seat that tilts back slightly tonight or in the morning. It’s a little frustrating to be looking this close to our discharge, but we thought these things were going to be provided for us. Oh, well.
Otherwise, it has been hard saying good-bye to everyone. We want to get home, but it is hard to leave all the people we have met here. Just over the last few days, Samuel has received a big poster from Timp View Softball with a cute little girraffe, a blanket from the NTU nurses, a teddy bear from some of the other nurses, and now everyone is signing a little receiving blanket for him to take home. Every nurse or doctor that I have to say good-bye to just tugs at my heart. And then there’s that old guy that helped out at the car wash last month who has been coming up here every night after work and sitting with Samuel for hours and hours. Often, his wife and daughter or his mother will come with him. And tonight we had to tell them bye for a few weeks because our house is just too far of a drive for him to make everyday. That was the hardest goodbye so far because we have gotten so used to seeing them. (If you’re wondering, the “old guy” is my dad.)
But going home is going to be so good for Samuel and I can hardly wait to be with the boys and Tom again. I know it’s going to take a lot of adjusting - A WHOLE LOT! But it’s definitely time for us to go home. Eight weeks today! It’s been the hardest eight weeks of our lives and yet, the most uplifting too.
Thanks so much to everyone who has helped us so far and all those who I know will help us in the future. Speaking of, the Logan ER nurses have volunteered to come into our home at night for the next while so that Samuel can have nursing care and we can get sleep. WOW! Keep up the prayers. It may seem slow, but they are being answered!
Love,
The Jewkes
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