Day 220 and it is officially our first day at HOME! Mr.B's official discharge happened in the late afternoon yesterday so I am now going it solo with my nursing degree (not)...yikes. We were blessed with an impromptu (?) party for B with a beautiful sign signed by the staff, a balloon and some great gifts. It was an emotional day yesterday that's for sure, well an emotional week actually. It was interesting trying to explain to Rylan, who was with me on the final drive from the hospital, why Mommy was crying when she was so happy. I'm certain the kid just thinks I'm nuts! Of course we walked in the door to find Torin in the couch with a fever of 102...it just never ends.
Our first full day at home today and Torin spent the day throwing up non-stop! B has been having issues with retching in the mornings as well and it is horrible to watch him retch and retch and be unable to throw up (do to his fundo procedure). I am venting his g-tube but I think it is the change from concentrated formula to powdered that is doing it. Why would I think that we could go with the cheaper option of the powder??
It was a bitter sweet day yesterday as well due to B's Audiology testing, he has nerve damage in both ears and needs hearing aides. I just felt so disappointed that we have yet another thing to add to the list. It can't be surgically corrected, he'll need the hearing aides for life. The hearing loss falls into the 'moderate' range so he can in fact hear a lot of things but for speech development he won't hear 'soft sounds' like esses or follow a 'normal tone' conversation. The good thing is that he can get them now and hopefully get comfortable with them while he's young. I'm not sure how they will go over, it's not like he keeps his nasal prongs in and he needs those to survive! I'm not disappointed because of the hearing aides themselves, that's neither here nor there, I just can't believe that there is yet another issue/defect. I am thinking that maybe it is in fact CHARGE Syndrome afterall. The main characteristics are visual (his coloboma) and auditory issues/defects. It does say that, "One of the hidden features of CHARGE syndrome is the determination and strong character these children display." I'll agree to that! Oh the complexities of Mr.B. I am looking at all the costs of his equipment thus far and am very glad we have extended medical but am sure I'll have a fight on my hands to get them to cover all of it as well as the oxygen costs. The bills are adding up that's for darn sure!
We also got outfitted with oxygen in the house yesterday. We now have a converter and 50 feet of tubing so I can walk around the whole upper floor without hauling a tank with me which is great. The nice thing about the converter as well is that I can get some moisture through it as well so his nares don't dry out. Of course he spends more time these days chewing on his prongs than having them in his nose...
To say I'm feeling overwhelmed is an understatement! It is a lot of responsibility to have a child with as many needs as B has, not to mention two other children (and a second one with special needs). I know that it is a matter of finding a routine that works for us and I also know that early intervention is the key to Braeden's ongoing success, I'm just so damn tired! Braeden is sleeping through the night, kinda. By kinda I mean he wakes screaming and then settles back into his sleep while I am on overdrive because my heart is pounding and can't go back to sleep. I do have to say that I am extremely proud of the fact that I got the boys to school on time both yesterday AND today even with a 'blow out' before leaving the house yesterday and B's retching today.
I did get to have a visit from both the RT and Homecare Nurse into the home today and they were able to put my mind at ease a bit at least. It is not like I don't have support, it is just that I've gotta do it all myself now! I can't pawn off the g-tube cleaning (and thus sending B into a pain induced fit) off to the nurses anymore.
Through all the complaining it is amazing and indescribable to have him home, just unfortunately not any less stressful...just different stress. I did get to achieve my one want in life these days, to lay down with B beside me and just lay there and love him...sweet surrender!