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 him...best 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.