Pre surgery and spinal fussion surgery updates

Just a brief update on Meggie, she has been doctoring for scoliosis for a number of years, getting x-rays and seeing Dr. Thometz at Children's Hospital.  She also has Osteoporosis and low muscle tone, which is not helpful to her more recent increase with her spinal curves.  Instead of having one curve, Meggie has two, so she is kind of like an S shape. one curve starts up at the neck and the other in the lumbar area in the back.  More recently Meggie's curve progressed to a 102 degrees in a sitting x-ray film. Not the direction we were hoping, but the doctor has been saying surgery would be inevitable, despite of our attempts to stabilize the scoliosis with a brace, therapy,and positioning, we even did massage and chiropractic care for comfort for a while.  So even though Meggie was a little younger than they would have liked her to be for this surgery, the curve was starting to progress to fast, and she was at a point where the scoliosis will not allow her spine to grow anymore, therefore surgery was scheduled at this point.  Many of you already know doing surgery on these children with multiple issues is not always rushed into or desirable, but often times necessary.  In preparation all the exams and lab work were done prior to surgery, and then one more unexpected call on Meggie's lab results indicated she had a low or abnormal PT, PTT and INR, in other words, her blood was not clotting fast enough.  So one more appointment, we were off to the Hematologist for a consult, and she confirmed Meggie does have what is called Von Wildebrands Disease, she will have easy bruising and bleeding, but the treatment was very doable and could start with an IV treatment one hour before her surgery, and then once each day for three days thereafter.
   


Surgery Day



Monday, October 24, the morning of surgery we arrived at Children's Hospital at 6:10am, and went straight to Day Surgery to check in.  After doing some paperwork, and a short wait, we were off to a pre surgical room to start preping Meggie for surgery.  We answered questions for the nurses, they did Meggie's vitals and the next nurse came in to do her IVs.  The only bad thing is that Meggie is not so easy to draw blood on or get IVs started, which the first nurse was about to experience.  The first attempt she managed to get the vein, but unfortunately it collapsed, as did the second attempt.  The nurses came back with some medication to relax Meggie (which worked great) and then the next attempt would be by a doctor in the Anesthesiology Dept. Dr. Santose, she was kind and compassionate, and also got Meggie's IV started on the first attempt.
After a short time she was off to the OR, where we spoke with the physicians, and staff before we had to leave her (which always is a difficult thing) and she would be brought to the OR room for the final prep.


Brad and I then found our way to the parent waiting area, where we would spend much of our day, other than going to get a meal.  I will admit I needed to do some sighing and some deep breathing in the beginning to relax and stay calm, that's where so many of you praying just kept us going.  This last week before surgery was the most challenging just knowing how close the surgery was coming, there were times my legs felt weak and I would just breath deep, and say a prayer, remembering when I am weak, he is strong.  Every 2 hours the nurse would call out from the OR to the parent waiting area and let us know how Meggie was doing.  The first call was at 11:00am saying they were just getting a good start in surgery and it was a little latter than anticipated due to having to start 2 additional IVs and the difficulties in doing so.  The second call was at 1:15pm stating Meggie is doing well, and her vitals are good, so I asked the nurse approximately what time she thought they may be done, and she said about 5:00pm.  During the day we were watching parents coming in and out of the waiting area and all of the initial families that had either come in with us or even those who came after us were all leaving after consulting with their child's physicians, the families would then leave with a smile on their faces even if they were looking distraught upon coming to the waiting area.  My hope was that we would be leaving with a smile too, and hear those reassuring word that everything is alright.
We were just waiting for the third call when the doctor came walking into the waiting area and I think the color just ran right out of my face, all I could think of was why is he in here, he should be in with Meggie, dose he have bad news? Is there anything wrong?  Just then I watched the surgeon's expression and he cracked a smile... now after bring Meggie to see him for many years, I knew him well enough to know he would not crack a smile if all was not ok......at that time the air just released out of my lungs like a balloon.  "The surgery went well" Dr. Thometz said, why don't you follow me to the conference room.  He explained things to us in more detail, how one rod was placed on either side of the spine and fused together with grafted bone, a transfusion was given due to her bleeding, but nothing foreign to them.  Then he asked us to have a seat in the waiting room until the OR was finished getting her ready to move to the ICU.  Though it seemed like we were waiting an eternityy to see her, we were just so relieved things went well



When the nurses and anesthesiologist rolled Meggie out of the OR, they said now she is going to look swollen they said, and she reacted to the foam pillow her face was laying on so she had abrasion looking sores on her face.and she reacted to bandaids, tape, which they seemed to use alot of, so that left many sore areas in different places.  All these major sensitivity issues, where did this come from?  this was new to us other than the bandaids, she is allergic to latex and and non latex bandaids, so bandaids are now a bad word to us, (just a little humor).                 



ICU

Meggie was quickly taken to the ICU, and Brad and I were then on to the parent lounge to wait till we could get into Meggie's room, during that time I was able to make a couple of quick calls and give friends and family updates.  When we finally got to Meggie's room, it seemed as though she was hooked up to every machine in the room, though there may have been more machines than I was aware of in that room. Through the evening Meggie received excellent nursing care, they were right on top of things, Meggie's oxygen levels would drop often and her pulse would climb higher and higher. And though the nursing care was excellent and I did get some sleep, I was still waking about every hour and at one point I may have gotten two hours of sleep in a row, I tried to take advantage, knowing that when we change to a medical bed area she would not have the availability of the nursing staff as in the ICU.  Tuesday morning I was told by the doctor she would be transferred in the afternoon around 3:00 - 4:00pm, so I got some lunch, and when I came back they were ready to transfer her early, because they felt she was stable, and ready for the healing care.



Tuesday, Oct. 25th

Meggie was doing well at the time of transfer, but unfortunately about a half hour to 45 minutes after her oxygen was dropping, and her pulse started rising, and some Honorable, nasty congestion set in, (now this is a child who is unable to handle even small amounts of congestion)  during the afternoon, she needed to be suctioned about 3, 4, 5 plus, plus times by the nursing staff whom would just come in and suction, and with in 10 minutes or a little more I would be pushing the nurse call button for them to come back and suction some more.  An RT had to be called in for suction and breathing treatments, and this was a great help, but still had congestion despite all efforts.  During the evening the pediatrician doctor ordered a chest x-ray and blood work, after reviewing the x-ray they decided she may have pneumonia, adalexsis (not sure of the spelling), where the sacs in the lungs collapse, or both.  I am just saying after 10 years of caring for this little girl, doctor mom says there is definitely some pneumonia going on, which is more confirmed to me on Thurs. afternoon.  IV antibiotics were started right away and we were told there was a possibilityy we would have to return to the ICU if things got to much for the care that is given on this floor or if she would need the ET tube place back in.  At that time the tears started to well up in my eyes and I had all I could do to hang on, it is never easy to regress!  Thank the Lord we made it through the night and did not end up back in the ICU, Meggie was now starting to show a little more signs of responsiveness by Wed. especially when the pain meds were changed., she had much better pain control.



Wednesday, Oct. 26th

Making some progress today had some fever off and on, but things are seemingly turning for the better, the antibiotics seem to be helping and they want to start some tube feedings with her formula.  We actually had Meggie sit in her chair today, 3 times, and she did tolerate it ok, with pain getting in and out of bed, so the nurses could adjust her meds so she would be able to have lesser pain at those times.  Still having some congestion, the fever was low grade, and we had a great night of sleep.  There are so many doctors, nurses and specialist in different departments coming in and out, it keeps me busy.



Thursday, Oct 27th  

We had a good evening on Wed. I think Meggie was able to sleep well and then Thurs. morning and early afternoon went well, we were able to keep on top of the congestion issues, and we even had some visitors on Thursday afternoon.  Unfortunately as we got later into the afternoon, Meggie was overwhelmed with congestion, had vomiting episode, and fever.  Not at all what we want after a surgery like this, more pedialyte and less formula for feeding for now.  On a good note we did get to remove the Foley catheter today hooray!  Little by little, and step at a time, I just keep reminding myself God is in control!

Laura Story wrote the song "Blessings"  And the words are so beautiful and meaningful, and I often listen to this song, it says:  What if our blessings come through raindrops, what if our healing comes through tears, what if a thousands sleepless nights is what it takes to know your near,....what if trials in this life are your mercies in discize.


Thank you all for your prayers you are blessings in our lives, ~  please continue to pray for continued health and healing for Meggie.   Have a good night everyone!