April 6th 2008 Brianna was hospitalized again. She was still having her then called "breath holding spells" (turning purple in the face not breathing and fainting) several times a day. The doctor in charged of Brianna Dr Armstrong was a real douche bag. He kept telling me that Brianna was deliberatly holding her breath when she would get upset, that it was normal and it was of no harm to her. This enraged me greatly! After I watched my baby have these episodes a few times a day sometimes for no reason, (she wasnt upset, etc) I decided my husband and I would video tape the next episode and conversation with Dr Armstrong and I would after threaten him that if he wasnt going to do further testing we would see what legal actions we could take. After videotaping an episode you can see it on this link http://www.youtube.com/watch?v=annFEKEEVlU (copy it and paste it) Dr Armstrong ordered a barium swallow study to see if aspiration was the issue for the following morning.
I had gone to work that morning since I had already missed a lot of work with Briannas hospitalization and surgery the previous month. When I got off of work I drove straight to the hospital... when I walked into the room you could see my husband Angels eyes were puffy and red, he had been crying. I asked him what was going on and he wouldnt tell me, he wasnt brave enough. I asked what the results of the swallow study were, but he lied he said he didnt know... that they just came in about 20 minutes before I got there and asked him to stop feeding Brianna (she was in the middle of a feed) that they were going to take her bottles away and not feed her until they had further information from the doctors as to what the next step was. My heart is still breaking as I remember and type this... my husband said "she was so hungry I couldnt do that to my baby, they didnt tell me why I had to stop feeding her so I let her have her last bottle" little did we know that that really was literally going to be her last bottle.
I couldnt wait for the doctors to make their rounds the next morning... so I asked the nurse that was caring for Brianna what the results were (she said "didnt your husband explain it to you?) (my poor husband wasnt strong enough to break the news to me and after she told me what the results were it made sense to me of why my husband allowed her to drink the last bottle)... Her name was Sarah (the nurse) Sarah Jackson... she said the swallow study shows aspiration (with every few swallows Brianna aspirates some liquids into her lungs) putting her at risk for reocurring pnumonias. I asked her what the doctors wanted to do. She said the doctors are thinking a g-tube was the best option for her and no longer allow her to drink by mouth.
(I was lost... what is a g-tube? Not feed my baby by mouth?....what!?!?!?)
She said the doctors and the speech pathalogist who read the swallow studies results would come talk to us with their final decision the next morning.
My aunt Leonor and uncle Fermin came over to visit that night... I remember their faces... speechless. A little after they arrived labs came in for blood work and I wasnt able to stay in the room and watch, I walked out... I walked across the hospital hallway in the 4th floor and I cried, and cried, nurses asked if I was okay... I had to say yes so they could leave me alone. My aunt and husband stayed with Brianna to help hold her and soothe her... I remember catching a climpse of my aunt talking to Brianna and helping hold her as I walked out... I was weak and I hated myself for being so weak but I couldnt help it.
My uncle walked over to me a few minutes later to check on me and I told him what was going on. You could tell he felt for us, for her.
The following morning April 8th 2008... we talked to the doctors who told us their plans were placing a gtube, that when we had made a decision to let them know so they could schedule surgery that they would give us time to think about it. Next the speech pathalogist showed us the video of her swallow study... yep I saw the liquid entering my babies lungs... yep it broke my heart into a billion pieces because actually SEEING formula dropping into your childs lungs as she eats is hard and you know that the feeding tube is a must, which is extreamly hard to accept.
They said they tried thick it formula (thicker formula) and she aspirated that as well. The only good thing (then) was that she would be able to continue eating pureed foods (gurber). To this day I am thankful to God that she wasnt deprived of both liquids and pureeds at the same time because it would have been too big of a hit to the gut for me as a mother. She continued eating pureeds until 18 months old when she begun aspirating them too. She is currently gtube dependant 100%
My husband and I talked about it, but we knew what the decision was... Brianna was getting a feeding tube.
We told the doctors her decision and they scheduled the surgery for the next morning.
Putting your baby through a second surgery in less than a month is hard... very hard... too hard... to much to handle... but what choice do you have when its a must?
April 9th 2008 Brianna had her feeding tube placed, surgery was a sucess THANK GOD... and we say good bye to bottles... and hello to feeding tubes, syringes, feeding pumps, feeding bags, special formulas, gause pads, airing out syringes, and constant fights with medical companies for on time deliveries of these supplies.
As I try to update the past it has now been 2 years and 2 months since Brianna has had her feeding tube and we are very used to it now... I think I have forgotten how to bottle feed babies... lol.
Thanks for reading.
Mommy
