Preparing for our Homecoming
November 18, 2012
This has been a busy week for Jordan, Ryan and I. We are preparing for Jordan to go home this Wednesday as long as everything goes well. We have had quite a few training sessions with the Respiratory Therapists, physical and occupational therapists, meetings, meetings and more meetings with nurses and agencies trying to meet all of our needs and making sure every last detail is taken care of. I am so glad that there is a person employed that her specialty is to make sure you have absolutely everything you could possibly need to make the transition go flawless as well as dealing with insurance to make sure those things are covered. We feel so overloaded as it is, that it is nice to have someone else deal with the insurance and someone who has the power to negotiate as to what needs to be covered. I find it interesting that since the insurance wants us out of the NICU as soon as possible that when it is time to come home, the hospital has negotiating power as to being able to make sure the insurance will cover Jordan's needs because it is a whole lot cheaper not to have him in the hospital than what he might need at home. The doctors are basically making sure we have our own mini ICU unit at our home. We will be having suctioning devices, oxygen, monitors etc. in our home. It should be interesting.
Because of Jordan having a tracheostomy he is eligible through the Oregon Department of Human Services Medically Fragile program to provide us with in home nursing care. The first couple of days we are home they will provide a nurse around the clock to help it be a smooth transition, then we get to choose which time works best for us. The doctor wants us to have it at night for a while so we can get sleep so that we are able to deal with his care in the daytime and not burn out.
We have had many emotions surrounding this day, but I really feel like we are ready to make this happen. The training is there and the next thing really is learning how to make our "new normal" work. I know the kids are ready to have me home as well. All the help we have had has been absolutely wonderful. But for all of you who keep asking how you can help, I am sure there will be opportunities here shortly:) Our family can only stay so long (I am thankful for they time they have given us- they have been amazing) and we are not out of the woods yet. But, we are going to have him home! We are all so excited! We also felt a sense of relief to have nursing care as long as we need it.
Tomorrow or Tuesday we will learn to trade out his trache. Ryan and I have both done it on a doll but have never done it on Jordan. The hole is covered by the plastic trache tube, so we have never seen it without. The nurses say the first time you cry. The second time you shed a few tears. The third time you are a pro. So, I am anxious to get to the third time! Its amazing what you start excepting as normal and are able to handle. I was freaked out over the gtube, but that is nothing now compared to the trache. Which I might add we are feeling more comfortable with by the day.
Jordan has his 90 minute car seat test in the morning. He has to pass this before coming home. They sit them in a car seat and make sure he can keep his airway clear while sitting in his seat for the 90 minutes. I don't think he should have a problem with this.
As I stated before, Jordan is a special little spirit. You feel it from him especially in those moments where he is having testing, his stats taken or just his constant trache care. His patience is amazing. I can only hope that will always be a part of his little personality. This experience has been challenging and will continue I am sure, but it does not feel like a burden but more of an honor to take care of Jordan. I hope my other children will feel that as well, especially since his care will take away from some of the time that was spent on them. I know this will call for some major creativity. So if any of you have some advice on how you juggle it all and make sure everyone feels loved, I would love to hear it.
The kids had to all have flu shots before Jordan gets home. Here they are lined up at the doctors office. Brooklyn got hers up her nose and the boys chose to have shots. Mikey hardly flinched, Tyler tried to do the same but his eyes were watering. Aaron was hilarious. He didn't know what to expect but was excited to be doing this with his brothers. He had a grin on his face then when she poked him it turned to shock and all he said was Ow! I guess it is one of those things that you just had to be there because it was just funny. We all got a good laugh at him.
Because of Jordan having a tracheostomy he is eligible through the Oregon Department of Human Services Medically Fragile program to provide us with in home nursing care. The first couple of days we are home they will provide a nurse around the clock to help it be a smooth transition, then we get to choose which time works best for us. The doctor wants us to have it at night for a while so we can get sleep so that we are able to deal with his care in the daytime and not burn out.
We have had many emotions surrounding this day, but I really feel like we are ready to make this happen. The training is there and the next thing really is learning how to make our "new normal" work. I know the kids are ready to have me home as well. All the help we have had has been absolutely wonderful. But for all of you who keep asking how you can help, I am sure there will be opportunities here shortly:) Our family can only stay so long (I am thankful for they time they have given us- they have been amazing) and we are not out of the woods yet. But, we are going to have him home! We are all so excited! We also felt a sense of relief to have nursing care as long as we need it.
Tomorrow or Tuesday we will learn to trade out his trache. Ryan and I have both done it on a doll but have never done it on Jordan. The hole is covered by the plastic trache tube, so we have never seen it without. The nurses say the first time you cry. The second time you shed a few tears. The third time you are a pro. So, I am anxious to get to the third time! Its amazing what you start excepting as normal and are able to handle. I was freaked out over the gtube, but that is nothing now compared to the trache. Which I might add we are feeling more comfortable with by the day.
Jordan has his 90 minute car seat test in the morning. He has to pass this before coming home. They sit them in a car seat and make sure he can keep his airway clear while sitting in his seat for the 90 minutes. I don't think he should have a problem with this.
As I stated before, Jordan is a special little spirit. You feel it from him especially in those moments where he is having testing, his stats taken or just his constant trache care. His patience is amazing. I can only hope that will always be a part of his little personality. This experience has been challenging and will continue I am sure, but it does not feel like a burden but more of an honor to take care of Jordan. I hope my other children will feel that as well, especially since his care will take away from some of the time that was spent on them. I know this will call for some major creativity. So if any of you have some advice on how you juggle it all and make sure everyone feels loved, I would love to hear it.
Jordan has been growing and filling out. He is now 8 pounds 11 ounces and 46 days old. He is looking healthier all the time.
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