Healing

So, my baby is feeling better!! And we are headed home tomorrow!!! My boy....my beautiful, handsome son is coming to pick us up❤❤❤

Thursday November 22

Brielle had bladder and kidney tests today. They went well but the results could have been better. She did get dora stickers, hence the attached picture........Anyway, she ate all her supper tonight which was good. Then the nurse checked her vitals and she has a fever and her heart rate is up......frustrating! So the doctor will be checking to see if she has a bladder infection and we'll go from there!

Wednesday's dilatation

Brielle's dilatation went well and they were out in record time. She woke up miffed again...she wanted mommy and hugs then she yelled and me and hit me, then hugs and loving and then some more yelling...it was kind of love/hate relationship for a while...lol. When we Got to the room she drank 175ml of ice water, 3x175ml of chicken broth, about 21oz of diluted apple juice and she kept it all down. Her bowels are moving beautifully and things are looking good. Today, Thursday...she has a bladder/kidney test and then hopefully done for a while. We are looking at being discharged this weekend...yahoo!!!
Last night was interesting though!!! I could have strangled the night nurse...definitely "old school". In and out all night long, lights on, door open, vitals any old time and not sure but I think her hearing is going too, because the young girl in the bed beside us had her IV beeping all night. I had to get up twice to tell them to deal with it. Then at about 5:30 she tells me that she'll need a wet diaper from Brielle at 6 a.m. At 6 she comes back in the room and takes blood ( or something) from the little girl in the bed nest to us and tells her that she needs to get up and change one of her things...... Well that just put the frosting on the cake for me.... We have been here two weeks and never once has anyone felt it necessary to do all this stuff in the middle of the night or that early in the morning....so, I went and talked to the charge nurse. I was so tired and frustrated! After talking to the charge nurse and telling her that this was unacceptable to me I marched back to the room grabbed my wallet and went across the street for coffee. I believe I will need a nap today!

Jumping the gun

Well it would seem I have possibly jumped the gun. Brielle has kept NOTHING down so far today. I have no clue what's going on. I'll keep in touch

Homeward bound

Well we're not released just yet but im sitting on my bed waiting for the docs to show up. Might sound selfish, but I need to go home now. It's been 10 long....lonely days....yes, it's been busy and Brielle has come a long way, but now we need to take home the things we've learned and try to function on our own. So, I hope the doctor makes it here before we head out 😊

First Esophageal dilatation done!!

Brielle went into O. R at 9:30 and came back to the room about 10:30 a.m. She woke up calling for mommy, but mommy wasn't allowed to be in the recovery room. So she cried of course and then got very upset when they told her they were taking her to mommy... Because she didn't believe them. She yelled at the nurse " NO YOU'RE NOT" but the nurse reassured her she was. when she finally got to the room she had a major melt down when she saw me. After some cuddles and loving she wanted to talk to her brother kyler and then to Cyanna her sister and then grandma and April. But we were able to call grandma and Cyanna. Now she's playing on her bed and had part of a Popsicle ... Which surprisingly she really enjoyed.
So doctor Dicken said that he was surprised that she was even able to get puréed food down that's how restricted her esophagus was. He was able to dilate it to about 4 x what it was. She will require another dilatation in about
2 weeks and possibly another after that. She will need to chew her food well and drink between bites, but things will be significantly improved.

Waiting game!

Today was a waiting game. Dr Evans finally came in to see us about 4 ish. Brielle will be fasting from midnight on tonight. They are hoping to do the dilatation of her esophagus tomorrow and check out some other things while she is under anesthesia. I really like their optimism about her prognosis. Tonight she is having mashed potatoes, puréed meatloaf with gravy and puréed corn... And yes, she LOVES IT!! She has become a bottomless pit even more so than before. Her bowels are functioning quite well.. Lol... So they have cut back her 25 grams of laxaday twice a day ....to once a day!
It's great to have doctors that are passionate bout their work. It means they are through and give wonderful care😊
The pictures of her with the Dora doll are from our hospital roommate and her cute little baby!!! It sure made the past few days a lot more pleasant to have such good company!

Ultrasound and cardio

Today was the day for ultrasound. We haven't officially received results but it looks like she has an enlarged bladder and she isn't emptying it completely so it's backing up into her kidneys. They haven't said how they plan to deal with this, but it brings another team on board.....ugh!! The renal team I believe this is how they are referred to. Anyway, Brielle is happy, bouncy, jumping, playing, singing and beautiful😊

MRI and other tests

She got a cute pink puppy from mommy after tests... Waiting for cardio echo now

November 12...supper is served!!

So after she polished off the puréed shepherds pie, soup and most of the squash from lunch supper arrived.. Puréed apple braised pork and rice, and puréed green beans and for dessert vanilla pudding and she was dancing with joy when it came....