Hi everyone,
We took a couple of days off of blogging but there has been a lot that has gone on. We were told that Ella was making great progress and would get extubated on Thursday but after 5 hours of being off the ventilator, Ella was struggling to breathe and her heart rate started to drop. Her lactate numbers had also told the nurses and doctors that her body was in stress. Ideally this number would be a 1 and hers got up to a 16... So the doctors and nurses decided it was time to reintubate. I was so discouraged. I went and sat in the quiet room down the hall and cried. I was wondering why the Lord would have her keep going through this... Then a man entered the room talking on his phone. I overheard him and he was explaining how his son had an ear infection and was on antibiotics. He then got a high fever so they brought him to the hospital and they told them that he had meningitis. I got a little confused at this part, but somehow his heart rate rose to over 200 and something else happened. The doctors then had to tell the parents that their son was essentially brain dead. The dad continued to say how he doesn't know how he will go home and tell his other son... I couldn't believe it. I sat there crying and praying for him and realizing that I still have my daughter and my situation could be much worse. God was helping me put things into perspective. Please pray for that family. I couldn't imagine going into the hospital with a son that has a fever then going home without him... Pray for a miracle for that little boy.
Yesterday seemed like a perfect storm. I was totally humbled as a mom and here's why... We planned to take Eli to get "THE best cinnamon rolls" (according to reviews) and to the Sacramento Zoo. Eli has always loved the zoo, so we thought that would be special... guess again! HAHA! The cinnamon rolls were a bit of a let down and Eli hated most of the zoo. For some reason this time he decided he didn't like animals, and three months ago he loved them. So I felt like a total failure. I planned on blowing up balloons and scattering them around our room at the Ronald McDonald House that morning, but I forgot to get balloons... I had also wrapped his birthday presents in a reusable bag from the back of our car and used paper towels as tissue paper. 🙈 This was NOT what I wanted for Eli's birthday. I wanted to make him feel special and celebrated, but by 10am I had already failed.
After the zoo, we went to the hospital and had lunch while we watched Ella struggle to keep breathing. This is where the story starts to change for Eli's birthday... While there, the nurses made a huge deal about Eli's birthday and our doctor actually shares the same birthday so he was "Ooo"-ed and "Aahh"-ed over a lot. Our Child Life social worker (the one who pays attention to how Eli is doing and tries to make things a little easier on our family and Ella), Sarah, brought Eli a huge bag of gifts and another box. The bag was a birthday pillowcase that contained a cute stuffed bulldog, hot wheel cars, a hot wheel track (which he is OBSESSED with), a playdoh set, and the mess free markers and coloring book. Isn't that amazing? We were so blessed by the gifts and couldn't believe that he was gifted so many and such perfect things. We then opened the box and it was full of party supplies to help decorate and celebrate his birthday (which I had failed on earlier), birthday cards made by kids, and many other little things. I started to cry at this point. God was using the hospital to help celebrate my son's birthday and I've been so busy there that I didn't have time to get all of those things. I was so thankful and humbled at the same time. Even though this hospital stay has been difficult, there are some memories that I cherish and would never change, this being one of them. Things looked up for Eli's birthday celebrations after this and all four of his grandparents came to help him celebrate that evening too.
Ella is still intubated, they're hoping to extubate one more time and if she doesn't do well then we are on for the tracheotomy. I still have hope that Ella can gain the strength she needs to breathe on her own, but the odds aren't really on her side. This is where I keep reminding myself of the pace maker and how the odds were against her there too. I know that God uses our weaknesses to show his power, strength, and glory, and I'm praying that He will do this through the healing of Ella's lungs. Please pray that God gives her little lungs strength and the ability to breathe on her own. The next couple of days are going to be crucial in her progress.
Thanks for all of your prayers, we totally feel them!
Love,
Jillian
The story of our journey with a daughter diagnosed with Hypoplastic Left Heart Syndrome (HLHS)... And as it continues with our son with a VSD.
Friday, May 4, 2018
Subscribe to:
Post Comments (Atom)
Wednesday... Thursday...Friday-We Are Home!
Wow. Talk about a whirlwind. Sorry I wasn't able to update everyone on Thursday. Things just got so busy!!! It was so different than wh...
-
It's with a heavy heart that I write to you... Our sweet Ella girl went to Heaven on Saturday morning. Her passing was really sudden...
-
This morning Matt and I took it easy and arrived at the hospital around 11. We got an update from the nurses saying that things went well la...
You didn't fail! So many times we as adults want everything to go with whatever we have imagined in our head, but while all we see are the "failures" in reality... the kiddos either aren't aware of our failure or don't remember the let downs.
ReplyDeleteThe photos you shared yesterday show a happy and excited boy. He knows how special and loved he is, I have no doubt.
Love you! <3
Thanks for sharing your heart, Matt and Jillian, as extremely difficult it is. I'm in awe, reading how our Jehoveh Jireh provided for Eli's birthday! His love is so amazing. With thinking of Ella today: "The Spirit of God has made me, and the breath of the Almighty gives me life." The pictures are precious. Thanks for posting! Love and prayers, Rick and Barb
ReplyDeleteI was diagnosed of HIV virus 4years,and I almost gave up on ever been cured because I have tried different medications of drugs and injections from different hospital to another, they always tell me the same thing, there is no cure for HIV/Aids all my effects to get cured was in vain, one day. But i never give up and I started making my research on herbal remedy on HIV/Aids because I believed nature has the power to cure all diseases.on my research I came across a testimony on the internet from a lady called Michelle from USA, who testified on how she was cured of HIV virus from DR JAMES HERBAL MIXED MEDICINE. I doubted at first time because i have been to different hospitals and lot of reputable doctors told me there is no cure for HIV virus but I picked up interest and gave it a try to contacted Dr James on his email drjamesherbalmix@gmail.comI told him my problem and he asked how long I have been HIV positive and how old I am, and I told him, he said I should not be worried that he will prepare me with his powerful herbal mixed medicine that will cure me from HIV, so I decided to listen to him and he commenced his treatment. 2 days later he told me that his powerful herbal cure for HIV Virus has been sent to me through DHL which got to me in 4days time. I used the medicine morning and evening as he prescribed for me for 21 days. I was totally cured and free from HIV/AIDS exactly as Dr James told me. I'm now free from HIV virus thank you so much Dr JAMES HERBAL MIX Medicine.
ReplyDeleteDR James herbal medicine is made of natural herbs, with no side effects, and easy to drink. If you have the same HIV VIRUS or any type of human illness, including,Miscaririage stop medicine, Backache, Back pain, Herpes,cancer, Ovarian Cancer, Pancreatic cancers, bladder cancer, bladder cancer, prostate cancer, Glaucoma., Cataracts, Muscular degeneration, Cardiovascular disease, Autism, Lung disease. Enlarged prostate, Osteoporosis. Alzheimer's disease, psoriasis, Lupus
Dementia.kidney cancer, lung cancer, skin cancer, skin cancer and skin cancer.testicular Cancer, LEUKEMIA, VIRUSES, HEPATITIS, INFERTILITY WOMEN CONTACT EMAIL : drjamesherbalmix@gmail.com WHATSAPP: +2348152855846