Depressed and Venting

[Babystone06]

So, I haven't been on the board lately. Partly b/c I was jealous of all the decanns happening. Don't get me wrong, I am so happy for everyone. In fact, I love reading them b/c they give me so much hope! I just wish it was us. Katelynn was getting so close to coming off the vent. She had a sleep study that indicated she can come off the vent. She was ordered to come off the vent totally, which lasted for about a week. She didn't even require oxygen. She was using the PMV all during the day with no issues. It didn't last long. Her respiratory rate went up, requiring her to use oxygen. When 3 liters didn't help she went back on the vent. Now she is back on 8 hours a day. For the past 2 weeks she has rarely been able to use the PMV. Mostly b/c she got sick from a trach related illness of course! Her pulmonologist is telling us that she just doesn't have the muscle strength and endurance yet. She needs to gain more weight. She is only 20 pounds and 2 years old (g-tube dependant) So the catch 22 is she has a hard time gaining weight b/c if she gets too much food or too high of a calorie formula/ additive, she vomits. She isn't living at home b/c of our insurance!! (limited nursing and therapy) She hasn't been home since she was 5 months old. She is at a skilled nursing facility, which is a house staffed with nurses and therapists. She has her own bedroom with all her own furniture and decorations from home. We visit her everyday but it's not the same. We haven't been up there in 3 weeks to see her b/c the whole family took turns coming down with a very bad case of bronchitis. (my son had it for 2 weeks and my other daughter went through 2 rounds of antibiotics, both requiring breathing treatments) I know if Katelynn got it she would end up in PICU, so we had to avoid passing it on to her. Sometimes I wonder if there really is a light at the end of this tunnel. I know the doctors keep telling us she will take 2 steps forward and 1 step backwards. It just is so hard to keep a positive outlook somedays. Sorry for the wo-is me rant. Just needed to get these feelings off my chest.

Ann Marie

[shon-mg]

I know how you feel on that - getting decanned is exciting for everyone, it used to get me down also but not so much anymore.
My son has had his trach for 7yrs and been thru 2 rib grafts - all the trach babies that we met back when we first went to hospital have all been decannulated except him!!!!
We are going back in tomorrow for a L & B. My son said he didn't want to try and be decanned, what am I supposed to say to that?
Anyway take care
Shona

[alizesmom]

You have every right to vent. You must really miss your sweet baby and then to have her take a few steps backward has to be discouraging. That is one reason why we are here, to listen to the sad as well as the happy. I wish I could reassure you that she will be decanned but I would be the wrong one to say that since it's highly unlikely my 2 will ever have naked necks. It's fine to be happy for those who are decanned and yet feel that prick (or huge stab) of envy at the same time. We wouldn't be normal if we didn't. :hug: Karen

[FightingForFaith]

I can't even imagine what you are going through. We didn't have our daughter home for 14 months and thought that was bad. Does Florida have a Medicaid program for kid's with long term disability that would cover skilled nursing? If they don't that is down right appalling. A skilled nursing facility is not home. I am sure you have talked with everyone and anyone who knows about this stuff but it just doesn't seem right. You need someone to advocate for you and your family. Is the problem that insurance/Medicaid won't cover the nursing or is it that there is a shortage? We were told Faith could spend up to 2 years in the hospital b/c of the nursing "shortage." Little did we know no one was actually looking for us and the minute we started looking ourselves we found coverage. Once we came home we realized that we didn't want nurses in the house all of the time and now just use them for work and whenever we can find someone to cover nights.

I am so sorry about the vent weaning thing. I do understand how it feels to take one step forward and two steps back. We recently got the go ahead to decrease Faith's support and low and behold she got sick (again) and is now back to her pre-weaned settings.

I know you probably tired of hearing this but I will pray for you guys- and I really do mean it. My heart just breaks that you and your daughter cannot be under the same roof. If you need anything please let us know.

:hug: Jen

[drct1245]

Ann Marie...
I am sorry to hear about your set backs. Was she getting sick during that week where she "pooped out"? It took us about 6 months to ween Ayden off his vent at night. He wanted to stay on the vent for about 2 hours each night. In addition, when he got sick, he ended up on the vent once for 24 hrs, but then came back off it during the day, but pushed us back getting off the vent at night. When we were supposed to try the PMV, he didn't like it b/c he had a 4.5. And because we were on the vent, we couldn't downsize.

Have you had a bronch done lately? Does she have any history of growing granulomas in her airway? As Ayden got older, he got some big granulomas, which the ENT said was common w/ kids who where mobile and on the vent. Just a thought... If not, could her airway be swollen for any reason?

I hope she can get stronger!!! :hug:

[cariaad]

I dont have any advice about the vent since we didnt have one, but could you visit and wear surgical masks? It must be so hard not to see her for such a long time. I wish there was a way you could have her at home...Deb

[twintotwin]

I can relate to your frustration Ann Marie. My twins were hospitalized for their first 2.5 years of life and vent dependent during that time as well. They were my first children and it was extremely disappointing that we missed out on so much during that time period. But now they're 6 y/o and home and those memories are nothing but distant.

We did go visit when we were sick as long as we had an anti-biotic in our system for 24 hours, and wore a mask as well. It's important for you to go as much as possible for both you and your daughter. It'll only deepen your depression to stay away.
I know these situations are all relative too...how far is the facility from your home? Ours was only an hour each way. Plus the hospital allowed us to stay overnight if there were rooms avail. Parents with kids not on vents could sleep at the bedside. How is your facility as far as parent support?

[JWorthington]

I am so sorry your daughter is having to live away from you, that is dreadful, you need to try and find some home nursing, this is not good for anyone, my heart goes out to you. It is hard reading about all the decanns, but it gives hope too. I hope things start to improve for you. And don't ever worry about venting here, we are here to support each other:hug:

Julie xxx

[Ainsley's Mom]

:hug: We all have the woe-is-me days. Hope your spirits pick up.

[haltec]

Sending hugs. I hope you have a better day today.

[mylesmom]

Sorry to hear about things, that must be brutal. You absolutely have every reason to be down in the dumps.......but, you'll climb out of them again. In the end it will all turn out.

[Livi's_mama]

:hug: :hug: :hug: :hug:


We've been in trachland for 3 yrs now and are just now getting towards the light. Hang in there.

[jschug2]

It is so sad that your daughter can't live with you!!! I feel so bad for her, and you for living in a facility. Good luck.