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Sunday, January 30, 2011

It just keeps going and going and going.......

Sorry so much for the very long time between updates. We have been training like crazy and thank goodness we had the wonderful Jim and Janet in town for another 3 whole weeks to help around the house and watch Viola or I probably would have gone completely crazy. It is hard enough to be away from your family when you have kids, but to have a situation like this and not have any family close by is extremely challenging and we couldn't be more grateful to everyone who has come out to help us.

I'm not sure what I wanted to write about in this post as sometimes I try hard to mask how difficult all of this has been. I always feel guilty if I think this is hard as so many other people have it worse or lost their babies and I always think that I need to be grateful but I guess having a child in the hospital for pretty much an entire year earns me some right to be down now and again right?.

I have to tell you that pre-trach I was doing ok. Thurston seemed on the cusp of turning a new leaf. He was happy and smiley, cooing, rolled over on his own once, almost able to sit with support, and I felt that perhaps he might have a shot at a half way normal life with lots and lots of intervention. Post-trach has been pretty devastating. My son has not had one day where he has been pain free. The vent is extremely uncomfortable for him and when he coughs or sneezes it hurts him so much, as it is a completely different ball game to cough and sneeze with a trach down your throat. He also gags ALOT and chokes every time you move him around, and due to all the coughing, gagging and choking his face turns red ALOT and he looks like a great big sad red balloon. He is also withdrawing from all the sedation meds and that makes him extremely uncomfortable. It has been a fine line of trying to wean him off of them but also, trying not to let him be in too much pain and discomfort from withdrawal. Aw my son son is an addict at the ripe old age of 11 months old. Wonder what the teenage years will bring.

You know I was actually felt really good about our life when he came home on the cannula. I knew it meant more equipment. I wasn't even bothered by all of the doctor and therapy appointments he would have...Pulmonologist, GI, Optomologist, Heart doctor, Neurologist, Developmental Pediatrician, Regular Pediatrician, OT, PT, Speech, etc. You name it Thurston pretty much is being followed by every ologist known to man. Still I didnt care. All of those appointments were still way less traveling then we would be doing had he still been in the hospital......I was really trying to find the silver lining to it all....I mean at least my kiddo was home so I wasn't about ready to complain about anything. I was looking forward to even giving him and Viola a bath together. It still wouldnt have been easy but doable. Now with the Trach and with the vent that is an impossibility. That saddens me to no end. With the Cannula Thurston would have been fairly easy to transport around in the stroller. With the trach and vent, it would pretty much take an army to do that, and quite frankly, who the hell wants to do an emergency trach change strolling around the neighborhood or have the vent suddenly break and have to bag just to stay home close to all of the necessary equipment. With the cannula I was able to transport my son in my car...never mind all we would ever really be able to go to is doctor appointments but there was something nice, normal about putting your son and daughter in your car together. Now we cant even do that. When we travel, Thurston has to go in an ambulance and Viola and I riding behind him. It is too dangerous for him to travel in a car. Thurston was cooing so much right before the surgery. One of the most devastating things about the trach is now he loses his voice. Although he has been able to squeak through the trach at times, I am so sad that I cant even hear him cry. He truly has lost his voice which also means, even more delayed speech down the road. And I don't even want to get into the mobility issue. With the cannula Thurston was pretty much still relegated to the living room but you could still easily transport him upstairs with an oxygen tank if we wanted him to explore the house a little more. The cannula also was very very long so we could at least walk around holding him, but not with the trach/vent. It is barely even 2 feet long. I had to rearrange the living room and even though I squished the rocking chair, the co sleeper and the changing table as close as I could, I still think we will have trouble moving him from those three places. Also, I cant hold him over my shoulder and have him fall asleep upright in my arms, one of my favorite positions before. And nevermind that my son aspirates and will probably not even begin to eat for at least another year if not longer. The trach also will make it much harder for him to roll over, yet another impediment to his already delayed milestones.

And dont get me started about the daily routine the trach has to offer. We still have to give him his army of 14 different medications daily at various times, we still have to give him his nebulizer treatments, but now boy oh boy, we have to do the fun trach cleaning daily which is very difficult and scary with a squirmy kid, and changes once a week. I roomed in the other day for 12 hours and Thurston was not doing well. We think he got a little cold and he kept desatting all day. I had to constantly suction him (yet another thing that causes Thurston great discomfort)and try and trouble shoot what was going on. I finally had to do an emergency trach change. But I kid you not I had to be by his side for all 12 of those hours trying to keep his sats up. I was crying the whole day thinking about how I would do that at home with a 3 year old daughter and no one else around, no family in town to call and help. I thought there is no way I am going to be able to do this, it is impossible, you really cant even walk away for two seconds to even go to the bathroom, a split second could mean life or death for your child with a trach and vent.

As I was talking to the doctor I told him that the saddest part for me, and why I was crying the most was that the entire day, I was Thurstons nurse, his doctor, his respiratory therapist, his clinical assistant, his pulmonologist, his G.I. specialist, his ENT, and his pharmacist, but the one thing that I was not able to be in that 12 hours is the one thing that I want to be the most and that was his mommy. All I want is to be his mother, to read to him and hold him, to play with him and to love him, but I was too busy trying to make sure that he was breathing OK to do that. I'm just not sure how I am going to hold up during all of this. I am truly devastated and sad about all of this. I have not been in the best spirits lately and I want to snap out of it but I find myself constantly grieving. It just seems that this nightmare will never end. Its like some sick and twisted demonic energizer bunny that is out to get me and my family. One day soon I hope to write something a little more positive but right now, I am just a bit down. I really hope no one thinks I am being negative, I am just trying to cope as best I can given the cards we have been dealt in life. I have to say its a pretty shitty hand.

Sunday, January 16, 2011

You better fasten your seatbelts its going to be a bumpy night.......

So I apologize profusely for not writing and updating as much as I used to. The longer this whole thing drags on the less I want to write about it. I feel so repetitive and things change so quickly that if I update one day, the next is usually 180 degrees different.

Anyway, I have also been having some huge issues with the hospital, I wont go into detail at all but that has unbelievably compounded our stress levels to the point where I almost think that I am more stressed out in the last month and a half than in the previous 8 months due to the fact that I have had to deal with a lot of other issues besides just dealing with going back and forth to the hospital and being with my son. Enough said.

I have been extremely adamant about the training of the trach as I do not want Chad and my training to uphold Thurs tons release(they wont release him until we are signed off on all training) so yesterday was the first time that I was able to change Thurs tons trach. When he is at home we will only have to do it once a week, and of course during emergency situations(lets hope those are few and far between.....the trach can get occluded or clogged as it is very very tiny and he could suffocate very quickly unless you change it out pronto...happy happy joy joy) So Chad and I have to change it at the hospital 3 times each and you cant change it but every 3 days so you don't irritate his poor little windpipe, so you do the math, that is at the very least 18 days. Anyway, he is no where near ready to go home or stable enough but just want to make sure we get all of that in. It went very smoothly and quite frankly it is actually very easy. It does take time to set everything up and it will most of the time take two people because Thurston has no neck and he wiggles alot, but the actual trach change really takes about 1 second. So that is going smoothly so far and I hope we can get all of this out of the way quickly.

As far as Thurs tons stability, he finally is OK, as a matter of fact, the doctor told us that he had an overload of patients and Thurston was the healthiest so he would be the one to move back to the Intermediate care never thought I would ever hear those two words together ever, Thurston and healthiest one. Don't worry, I am not disillusioned by my sons illness. He is still a very sick little man. I am now very aware that he could still possibly die from this illness.......its something that just comes along with a kid in his shoes, who has been in the hospital this long and who is still on an unbelievable amount of cocktails and oxygen and support. Once he no longer needs oxygen and he gets the trach out will be the day when I can finally feel that he has somewhat joined the rest of the preemie world and be may be only more suceptible to illness than other kids etc. I kind of doubt he will ever join the real real real world. I fear that too much has happened to him and that unfortunately alot of this will haunt him for the rest of his life, but I hope we can get to a point where life will be comfortable and enjoyable for him. He has been puffing out quite a bit lately, retaining a lot of fluid, alot more than even right after the surgery, I might be able to post a picture later but my poor boy looks like the stay puff marshmallow. They are now tweaking a lot of things this week in hopes of transferring him from the hospital vent to the home vent and then we will be trained on all of that. Then they have to keep him on the home vent for a while to tweak that and see where he lands. In the mean time Chad and I will be training away, trying to get it all in so he can finally come home. Could be another month, no one knows it all depends on Thurston.

Yesterday was pretty exciting. Right after we did the trach change we were on our way home where Viola was being watched by our wonderful friends Janet and Jim who came out for a second time to help us again...they are just pure and utter angels!!!!!! So we get a call telling us Viola had vomited all over the place and she had a slight fever. So far we were not too worried until we got a second call telling us her fever had risen to 105.6. We were driving in the rain, through heavy traffic, and no where near home. I did not even hesitate, call 911. She had also complained of a headache and I was terrified as to what that might mean. So I called 911 and they came to the house and we were able to get there before they took her to the hospital. They asked us where we wanted to go and said pretty much anywhere we went most likely they would send us too Dell. You know what Universe. When I told you that I really really really wanted my whole family under one roof for once, that is not exactly what I meant. Anyway, the weird thing was when we got there I thought I had recognized the EMT people....lo and behold they were the same ones that transported Thurston on Thanksgiving day. One of those top 10 lists of how you know you have a very very very sick start to know the entire medical personnel throughout Austin Texas. Anyway, when we got there there was no way I could go see Thurston because of Violas illness and vomit all over me. Ain't no way I was going to expose him to all of that, that's the last thing that poor kiddo needs. So even at the hospital we were still separated. UGH. I did manage to get a pumping in and give him a nice dose of antibodies hopefully that protected him.
Anyway, after all the tests etc it was decided that she just had a virus and they sent us home. Its funny Chad and I were talking about had this happened to Viola pre-Thurston we would have thought it was the end of the world. We would have thought that was the worst thing that could have ever happened to us or our family hahahahahahahahhaaaaaaaaa. I wish. Throw any flu our way, I dare you. Give us a broken leg or arm, I laugh in your face hahahahaha. What we thought was so horrible at one point, now just seems like a mere drop in the bucket. My son has a horrible life threatening illness, and yes there are some things that definitely could be worse I know, but now spending 5 hours in the hospital emergency room was like a spa treatment in the grand scheme of what we have been through. You never know how good you have it etc. al.

Anyway, sorry for the long delay and because my husband is in charge of the camera and loading of videos, I cannot post any stay puff pictures but hopefully I can as soon as that is all done. Thank you again for all of your continued support and prayers. I hope all of you are doing well and healthy safe and warm. I knew this beautiful older lady that I served in my restaurant in my waitress days who always used to tell me the one simplicity of life.....Everything is always alright as long as you have your health.......she was 100 percent dead on right. Cant wait for that to be true for my son. It seems that its just taking too long poor little guy.

Friday, January 7, 2011

Rough Week

So I knew the honeymoon would be over quickly, as everyone was so pleased with thurstons progress, but things went downhill and he has had a rough few days. He is getting a million mucos plugs in his lungs and is severely atelectic( His xray looked worse than before and he has needed a lot more oxygen and is trouble keeping his saturations in the 90s. I truly hope things turn around soon, he gets his first trach change tomorrow and then they can lay off of the sedation meds and hopefully he can start moving around more. He is pretty miserable right now and completely agitated. This definitely was one of my greatest fears of the trach surgery, the week after was supposed to be pretty tough, and it makes me wonder if we made the right choice. Only time will tell........

Update..just called the hospital and now they think he has a bacterial infection/upper respiratory and he is on anti-biotics, pretty much all my trach fears are coming to kid has never had a single illness his entire life, only aspiration, not one little sniffle, nothing. UGH!!!!!!

Tuesday, January 4, 2011

Naked Face Club.....

So here are a couple of pictures of my sweet boy without his famous mustache. He did really well post surgery but they did have to use nitric oxide to get his oxygen down. Right now he is somewhere in the 50s on oxygen and I actually dont remember what his setting are on the vent. Most likely he will be coming home on a vent so I will be re-trained on all of that. Chad and I are going to have a very busy next few weeks as we get trained on all aspects of the trach, how to take it out and put it back in(yes we must push it into that ominous hole in his neck). CPR for trach, how to tie it on, all of the vent settings, cleaning, emergency etc. As long as Thurston does not get an infection, or barring any complications from the surgery we should be home fairly quickly, in about a month or so. I guess if you have been in the hospital for almost a year, a month is actually pretty quick. I remember thinking how a month was a very long time, I remember thinking 4 months was a long time, wow things change. I may not be able to update as often as I like and unless something out of the ordinary happens, I will be busy training and getting ready for my son to come home and preparing our living room to duplicate that of a mini hospital setting. We decided not to put Viola in preschool as it was just too far away and if I didnt have nursing or someone called in sick, I wouldnt be able to pick her up. Just trying to get her to and from the preschool would be very complicated but if Thurston does come home fairly quickly, then she and I can start doing other things like going to the library again, playdates etc. so I am happy about that. Thank you again for all of your encouragement and hanging in there with us and I am still going to continue my thank you post, really there are still many people I need to thank. Take care one and all
Donna, Chad, Viola and of course Thurston