Showing posts with label Pulse Oximeter. Show all posts
Showing posts with label Pulse Oximeter. Show all posts

Monday, July 16, 2012

PICU Day 18 ~ Full Update

~Smiles after being told we were going home!!~
Today started like every other hospital day with the Lovenox shot at midnight, a bottle, a few hours of sleep, and then labs and another bottle at 4:00a.m.  I was especially anxious to get this particular set of labs over since they were planning on doing an arterial stick in the hopes of getting a more accurate reading for the blood gas.  The arterial sticks are more difficult than even the regular ones they take each day; and at Baptist, the nurses are not allowed to do them.  So a respiratory therapist came and tried once, failed, and they decided to simply do a regular blood draw from the vein.  Thankfully, we had a good nurse who had been able to do it in one try the previous night and again got it in one try this morning.  We were especially looking forward to these results since they would tell us the CO2 level in her blood and let us know whether or not we were on our way home.  Mid morning brought an x-ray, but this was different than all the other x-rays which we had had done at the bedside (with a machine they wheel around the hospital).  Instead they brought in a wheelchair with an attached oxygen tank, had me hold Noelle while seated in the chair, hooked Noelle up to the tank, and then took us up one floor to the radiology lab to have a fully detailed x-ray done.
~Final hospital snuggles with Daddy~
~Almost ready to go...~
Poor little Noelle did not know what to think when they strapped her to a board with her arms above her head and took pictures with her lying flat and then on her side (she was strapped to the board and her face was quite funny as she was "suspended").  Late morning, the medical team finally made their rounds and had three great things to report to us: 1. The CO2 level was still on the high side but was significantly better than the previous day, 2. The blood clot in her leg was completely gone and thus the Lovenox shots would not be required any longer, and 3. We were going home!!!  That news was music to our ears, but we could not rush out the door as there were reports and prescriptions and final procedures to complete.  The news of the blood clot was an extra special praise to us as it could have been quite serious and caused some damage, but it was also a praise since it meant we would not be required to continue those shots at home (which I was dreading, even though I would have figured out some way to deal with it...without doing it myself!).   It was also one less thing to concern us and to watch closely, amidst the many other issues
~A friendly reminder to well-meaning people~
for which we were already facing extra doctor appointments and close following.  The rest of the day was spent with the typical feeding schedule, vital signs, filling prescriptions, speaking with various specialists and other medical staff, visiting with a dear friend from church, getting discharge instructions, scheduling follow-up appointments, and packing up everything from our 2 1/2 week stay.   By the time we had done all of that, signed our discharge papers, made multiple trips to the car with our stuff, connected Noelle to our own portable oxygen tank, and situated her in her carseat, it was after 8:00p.m.; but we did not care since we were going to be going home!!  With some final snapshots and a few goodbyes, we were on our way; and walking through those hospital doors to the outside world felt like true freedom.  I had not stepped outside that facility in five days and had made it home only a few times during the entire 18 days, so I was especially looking forward to having my family all together in our own space once again, with no more midnight shots, no 4:00a.m. and 4:00p.m. labs, no more x-rays or ultrasounds, and so many other things.  The sleepless nights would continue~that is just part of being a parents; but we would still get more sleep than we did in the hospital, and it would certainly be more restful.  We made it home around 9:00p.m. and
~Fully enclosed & ready to ride~
~Ready to leave our room~
connected Noelle to her oxygen machine and pulse oximeter, unloaded our vehicles, fed her, and readied for our first night home.  It was an adjustment~mostly because the pulse oximeter decided to false alarm multiple times through the night.  However, Noelle rested very well without the usual interruptions she was used to experiencing, and the smile she gave me first thing the next morning melted my heart and made me so thankful to God for bringing us through this event in the manner that He did.  It was not without fears or struggles or tears; but it was also never without true peace, and the fears and struggles were dealt with best when left at His feet. 
~Sweet smiles after the first night home~
So now what?  We continue to make the adjustments of being home with a baby that is on oxygen, a monitor, and multiple medications while also making multiple trips a week to various doctors; but while challenging, it is worth every effort~especially when we consider the alternative.  This trip through the ER and PICU was certainly not easy, but we also saw many other children in those places who did not walk out the hospital doors and who will not walk out those doors with the same results which we did.  It keeps things in perspective for us, even as we walk our own road.  We have been warned that more hospital stays are likely in our future, given the severity of Noelle's lung condition; however, we also know that we will not end up there again without God's sovereign allowance.  So we walk through these days with caution, with protection, and ultimately with trust, knowing that He has gone before us; and we look forward to the days when we can "relax" and deal with the "easy" things such as teething, trips and falls, stitches, broken bones, and the various emergencies that "normal" children and parents face on a daily basis.  In the meantime, we do not take one day for granted and continue to thank God for this precious miracle that grows more and more dear to us each passing day.  May God richly bless you for your fervent prayers on our family's behalf.







Thursday, July 12, 2012

PICU Day 18 ~ {July 12, 2012}

A full update will be coming sometime in the next few days, but we did want to thank people for praying and let everyone know that we are home!!!  God was gracious in so many ways, and you will understand more when we have a moment to share details.  We still spent a full day at the hospital today and arrived home around 9:00PM and are quickly trying to adapt again to being attached full time to oxygen as well as a pulse oximeter amidst the other adjustments of things such as administering all of her new medications according to the proper schedule.  However, it is worth every single "inconvenience" just to be home with our sweet girl.  Thank you for praying so earnestly for us, and we look forward to sharing the details very soon.  To God be the glory....great things HE has done!!!

Tuesday, June 26, 2012

Most Recent Happenings / PICU Days 1 & 2 ~ (June 25th & 26th, 2012)

We will continue to post as we are able and will add pictures when possible, but Noelle has been admitted once again to Baptist as of yesterday.  She had not been herself for a few days, and I thought it was possibly due to her thyroid levels which we were having checked Monday morning.  Those levels actually came back too high {instead of too low, which I had wrongly suspected}, so yesterday afternoon I took Noelle to her pediatrician to address the lack of eating and constant drowsiness she was displaying.  However, when I pulled her out of her car seat at the pediatrician's office, she was a dusky purple color, fussing, and just not looking well.  They quickly grabbed some oxygen and a pulse oximeter {which proved her levels were very low} and called 911.  Within minutes, we were at the ED and being rushed through stabilization procedures and the admission process; and after an x-ray and echocardiogram, it was determined that her pulmonary hypertension is elevated once again and has caused the right side of her heart to fail.  This has also started leading to other issues such as swelling of her heart, slight depression of her left ventricle, fluid around her heart, and liver enlargement as well.   They do believe we caught it in the early stages, but it is unclear at this point how things will progress.  We are thankful that she has responded well to the treatment thus far (the same treatment she was given in January for this issue: milrinone and nitric oxide), and they are working on changing over this treatment to oral medications so that she can be managed at home after a few days and followed as an outpatient.  The large concern is that they are not sure what set things in motion for this to happen again, and this issue could go either way over time.  It could continue to get better and heal with time or it could worsen again and eventually need further intervention to keep her heart functioning.  Many things have been presented, but there are so many "what ifs" that we are just focusing on what we know and how she is currently responding in the moment.  She was acting more like her old self last night and this morning, although this afternoon she has reverted somewhat again; but we believe that is due to her large lack of sleep through the past 24 hours more than anything else.  Please pray for rest and strength...mostly for Noelle but for all of us, as well as continued wisdom for the doctors as they seek to understand what is happening, why it is happening, and how to properly treat what is happening.  Amidst the chaos, drama, and the multiple unknowns, there is still immense peace; and we know that God is continuing to shape and mold His plan for our little family.  Some lyrics from an old song kept floating through my head and were a comfort last night....

There is peace, there is calm in the midst of the storm,
The Lord is there beside me.
He gives grace, He gives power, He gives strength for each hour...
...
There is joy in my soul, for the Lord has control, 
And beneath are His everlasting arms.

Thank you for your faithful, constant prayers.  We will continue to update as we are able and as we have access to the internet.