God once again set us up with the perfect nurse for today. I told her tonight that she thought she was there to care for Josiah but she was really there for me today. She is so good to Josiah. She is also one of the charge nurses from the CCCU and she's called herself Josiah's girlfriend. She was fighting for that role with another nurse but I think she won.
As you may have guessed by now, my meeting with Josiah's cardiologist did not bring good news. The short form is this: for a variety of reasons, the cardiologist does not expect Josiah to be a candidate for the second surgery (the bilateral, bidirectional, cavo-pulmonary shunt - formerly called the Glenn, which was his first surgery on August 15th and was taken down on August 29th). It is also looking unlikely that he will be a candidate for a heart transplant. Also, related to this is the fact that the cardiologists are very concerned about Josiah's current and future neurological status based on the imaging they saw.
I heard the words "palliative care" today.
Well, I was looking for something to help me cry .... This worked. I haven't had time for a long and good cry but I'm confident that the faucet will work when I'm ready.
There will be no discussion in the big group on Monday regarding Josiah. My cardiologist took him off the list. Neurology will try to assess Josiah on Monday. There will be a meeting on Tuesday morning with a couple of cardiologists, an OT and PT, a nurse practitioner, a fellow, and someone from neurology. The main purpose is for all of those people to hear from each other while they are speaking to Graham and me. I don't know all of the criteria for getting on the transplant list but part of it is neurological so neurology's expectations are important. However, based on what our cardiologist said, there are a variety of other technical issues that I think would keep Josiah off the list (without a few miracles).
It was helpful to speak with the chaplain today.
If the conversation with the cardiologist hadn't happened today, I would have said it was a pretty good day. Josiah was fussy this morning but I gave him a couple of stroller rides and he did better than expected during physio on his mat. I don't think he needed suctioning. He also sat in his tumble form while the OT and I tried to get him to taste formula mixed with rice cereal from a spoon. He was on 1L/min of oxygen all day and increased to 1.5L/min when I left. Before I left I was able to rock him to sleep and cuddle him in my arms for around half an hour. At one point he started smiling and doing a belly laugh while he slept.
The boy I mentioned yesterday was moved to the CCCU.
When Isaac arrived he was happy to see Mommy and gave me some cuddles before falling back to sleep.
Here is our song tonight:
Thanks for your prayers! We know that God can and does heal, so we're praying with you for a miracle.
Blessings,
Elizabeth
p.s. Graham had a nice visit with Josiah tonight. Josiah had just woken up when Graham arrived, and he gave him lots of smiles. After his feeding and meds Josiah fell back into peaceful sleep again. The nurses had turned down his oxygen to about 1L/min as his sats were good.
Dear Elizabeth and Graham,
ReplyDeleteit is good that you are together, after hearing what the cardiologist thinks. I feel deeply for you. May you experience the presence and love of God surrounding you. Isaac will uplift your spirits , as indeed will darling Josiah.
Thy righteousness also, O God , is very high, who hast done great things: O God, who is like unto thee!
Thou, which hast shewed me great and sore troubles, shalt quicken me again, and shalt bring me up again from the depths of the earth.
Thou shalt increase my greatness, and comfort me on every side. Psalm 71 verses 19 - 21.
And they brought unto Him also infants, that He would touch them: but when His disciples saw it, they rebuked them.
But Jesus called them unto him, and said, Suffer little children to come unto me, and forbid them not: for of such is the kingdom of God.
Verily I say unto you, Whosoever shall not receive the kingdom of God as a little child shall in no wise enter therein.
Luke 18 verses 15 - 17.
Cast not away therefore your confidence, which hath great recompense of reward.
Hebrews 10 v 35.
Thou art the God that doest wonders: Thou hast declared Thy strength among the people.
Psalm 77 v 14.
Our great and merciful Heavenly Father, in the mighty and wondrous name of Jesus, I am praying for a miracle, that all of Josiah’s blood vessels are clean, elastic and function excellently. Josiah’s immune system grows stronger daily and every organ and cell of his body functions perfectly. Thank you most gracious God.
Create in me a clean heart, O God; and renew a right spirit within me. Psalm 51 verse 10.
I shall not die, but live, and declare the works of the Lord. Psalm 118 v 17.
God in your wisdom guide and enlighten all the medical team, and everyone looking after Josiah. Thank you God and we give you the glory.
Dear God, in Jesus’ name comfort and sustain all ill children, their parents, grandparents, relatives and concerned people. Thank you God.
Love and prayers from your auntie Julia.
Dear Graham and Elizabeth,
ReplyDeleteWe read your blog late last evening, and prayed together for you as you try and make sense of this turn of events. I'm so glad that you are together today. We continue to stand with you in believing for a miracle for precious Josiah. May you know the abiding presence of God hour by hour and may Issac fill your day with laughter.
Love and hugs and prayers, M
I don't really know what to say, but I just had to say something. Without Jesus, there would be no tomorrow. For any of us. The song that has been with me this whole week, is "Bless the Lord, O my soul". I can't remember who sings it but it has caused me to tug on Jesus' garment. He is the Great Comforter.
ReplyDeleteEvery time I think of you, Elizabeth, I can see you held in the arms of the Lord. Josiah is such a precious little boy to all of us, but our love cannot even come close to the love his Father. Rest assured that people all over the world are praying for all of you, and we will continue to do so. Remember, He collects all of our tears in a bottle!
Love,
Aunt Sandra
We love you guys and are continuing to pray for a miracle. Prayed for Josiah and your family last night after reading. Glad to hear that Josiah at least had a better day. I hope that you have a peaceful family weekend full of more unexpected cuddles.
ReplyDelete