New here:-)

[cmnorman]

Hi everyone-

Just wanted to first say what a blessing to have this website and message boards. Â*I have learned so much and feel so empowered by the knowledge and experience of our group!

This is my first post and I have been too busy to get info on my daughter Marisa to the website. Â*I have a small dilema which we are trying to sort through. Â*I hope I can get some feedback to help us.

Marisa is a 27 wkr preemie, now 2.5 mos adjusted. Â*She is still at the Childrens Hospital here in VA in a step-down unit after spending 3 months in the NICU. Â*In the NICU, she had about 12 extubations, as far as I counted, and as a result, was trached 2 weeks before her due date. Â*She also had a Grade 4 brain bleed on her left side. Â*Since she was trached, she has been on the trach collar on a smidge of oxygen.

The NICU was going to send us home once she got to bottle feeding. Â*We transferred to the step down since beds were available. Â*Now we have new doctors with different criteria for going home. Â*After several bronchs, she was officially diagnosed with mature Acquired Sugottic Stenosis, about 95% obstructed. Â*This unit doesn't like for kids to go home with greater than 90% obstructed, for fear of not having another airway to use. Â*Instead, some docs recommended to stay at the hospital until the LTP is done, which will probably be about 1.5 years. Â*Another doc said that we should be able to go home, as long as we understand the risks. Â*

My husband and I are very competent and have been well-trained by the NICU for trach care. Â*In fact, almost everyday I have been frustrated with the lack of quality care in this step down unit. Â*I just want her home, with nursing care, so I can give her the love and care that she needs. Â*Developmentally, she will grow and thrive at home. Â*She catches just about every infection in the hospital. Â*It has been very frustrating to not have had my baby home yet.

Did anyone else bring their child home with that much of an airway obstructed? Â*I just want what is best for my child and I am willing to legally fight for her to come home. Â*With a high risk of CP, as well, I just feel that she will get more attention at home that will help her tremendously. Â*Not to mention, I can only reasonably spend 10 hours a day with her, since the drive is 45 min one way. Â*With driving and pumping 4 times a day (nursing her at the hospital twice a day), it is very exhausting.

Sorry so long....just wanted to know if anoyone was in a similar situation. Â*Will try to get Marisa's info posted soon. Â*She is a doll and the light of our lives.

Michelle, mom to Marisa, former 27 week preemie, 2.5 mos corrected, trached, mild BPD, left Grade IV brain bleed, reflux, most beautiful brunette you have ever seen

[Laurie]

Welcome! My son was a 27 weeker too! Our major fight has been with his lungs, and we ended up with a trach around his due date because of the need for a vent long term.

This airway obstruction reasoning for keeping Marisa in the hospital does not quite make sense to me. I think many of the kids on this board (most of whom live at home) cannot breathe if their trach is not in place, including my son. He does not have stenosis, but we just found out that he has developed a scar tissue mass above his trach, that was 100% occluding his upper airway. The doc cut out a little, and now he is 75% occluded - I still don't think of this as being a really viable airway. He developed this condition gradually, in response to having a trach. Does this mean he needs to be readmitted to the hospital until we have surgery to remove this scar tissue, which will likely happen in a few months? I don't think any of our docs would recommend this. I think as long as her trach can be changed easily, and you understand the absolute necessity for the trach, and the risks of accidental decannulation, etc., she will be as safe at home as a trached kid can be -- which is reasonably safe with the right care. And, Evan spent almost 8 months in the NICU and I thought he was a happy kid while he was there. I realized what a REALLY HAPPY kid was once he got home. I think your instincts are right - get some nursing help, get her home, and go for it!

[cmnorman]

Thank you Laurie...any congrats on your little E-man Our babies are truly miracles. And I think no one knows the NICU life until you experienced it. I am glad you now have your son at home.

As a left-brained person, I questioned the % occluded as well..I mean, what really is the difference between 85 or 90% occluded? Either way, there is still not a lot of air moving through. I am not sure if it is a liability issue or trying to maintain enough kids in this unit...I hate to think that way. I know we have demonstrated our skills way better than most of the nurses there, so that can't be the issue. Part of me always like to appease others but I just have a gut feeling that bringing her home is best.

I am thrilled to hear that they could cut off some of the scar tissue for Evan. When is his surgery? And what type of surgery will he need..laser? Any update on how his lungs are progessing?

Well, I am off to the hospital. Thanks for replying. We will be meeting with all involved Monday afternoon so I will definitely update.

Michelle

[Olga]

I have never heard anything so ridiculous. As Laurie says most of the children on this website wouldn't be able to breathe without a trachy - Grace certainly couldn't. So whether the airway is 97% occluded or 85% occluded it wouldn't make any difference. We don't get home nursing here in England so we stayed at the hospital until my husband and I both felt competent enough to look after Grace at home. As you say hospitals are full of germs and the best place is at home. Also if you are more happy and relaxed at home so will Marisa be. Good luck. Olga

[hcs_mom]

The best place for Marisa is at home!!!

My little Hannah was a 25 week preemie and trached due acquired subglottic stenosis. She underwent 9 planned extubations and helped them out by pulling the tube herself numerous times (I lost count around 9). Hannah got her trach on 11/26/03 and the bronch showed alot of airway swelling--we were "assured" the trach was the answer and it would go away. Her bronch on 1/02 showed no improvement and they think she has reflux. Because her airway is still so irritated and swollen, they have NO IDEA what grade of stenosis she has and she came home on 01/05. Hannah picked up every bug that was in the hospital as well. She is doing much better at home.

I would certaily question their reasons for not letting her come home. From a health perspective, you can limit her exposure at home. Developmentally, she will take off! Can you get some support from the docs that cared for her on the other unit? Maybe they can assist you in this battle...

Good luck! I hope she is home soon--where she belongs!
Jennie

[sandra]

I think home has got to be better than the NICU. We are in our eigth month there. I think you should trust your instincts. I told our doctors that we understand the risks and Brian needs to come home.He has death spells and has to be bagged out of them. This is their main concern, but the spells are not predictable. I told them we could deal with that at home. I feel that developmentally, home is where he needs to be. I hope you get home soon. You jnow what you are doing. Trust yourself!

[Triciasmom]

Hi, and welcome.

Our story is really different, as no one diagnosed our daughters VCP until she was 4 yrs old. Now, somehow she managed to not only survive but thrive with a very very tiny airway (not complete obstustuction). The first ped ENT that saw her was sure that a trach was just days away..but we actually held it off for another year. The whole purpose of the trach is that it IS the main airway. I don't think I have ever heard it thought of as a secondary one. It is a major surgery that opens the body, and you don't do it "just in case". (my opninion there ).

I agree with these other lovely mothers here, do some research, get more information, and stand you ground. More than once my gut instinct has been right, and once it more than once it has saved my daughter's life.

Godspeed

Clare

[akabot]

You are right. Get her home. Corey was a 27 weeker with acquired stenosis (and vent dependence when he first came home). He came home at 1 month adjusted age. I think that him coming home was the best thing that could have happened to him. He actually started getting better at home (something he never seemed to do at the hospital). Corey's stenosis is bad enough that he cannot breathe without a trach at all and that has never been a problem (because the trach is there). I would fight to get her home.

Corey will be having the LTP in April. Hopefully that means that his trach will come out this summer!

Best wishes in trying to get Marisa home!

Amy