Please pray for my dear friend Susanna from The Blessing of Verity. This precious woman and family have been one of the two top inspirations for me through the last few years as God has called us into the world of special needs adoptions. I cried and prayed and cried and prayed with her for little Tommy with the million dollar smile to be adopted. God, in His wonderful grace, provided for Susanna and her family to be the ones to rescue him. She was so in love with this little man - it was amazing to behold. Two days ago, God called little Tommy home to Him, a little over a year after he came home to Susanna. I don't have any details other than it was an accidental drowning and that Susanna is blaming herself, though those involved say it was just a tragic accident.
I cannot even imagine the grief and pain. This is a road that every parent prays they never have to walk. Please lift her up in your prayers over the next weeks and months. That our precious Savior would carry her and her family through this time of unimaginable grief. I trust with everything I am that God is sovereign and has a perfect plan ~ it is just hard to understand at the moment. But just because I cannot understand, does not mean that it is not true. Oh, sweet Savior, please carry my precious friend.
It is hard to move on to a Serenity update when I just want to grieve for my friend, but I don't know when I will get another chance for a bit....
Serenity's surgery was on July 25th. She came through the surgery very well though there was some concern during the surgery about her breathing. Everything appeared to be just fine that afternoon, so Handsome and I were fully expecting that she would come home the next day. Ummm, no. This was the first time that Serenity had been hooked up to oxygen monitors while sleeping at night. We knew she had sleep apnea - thus the reason for the surgery - but we just didn't realize how bad it was. In general, healthy people have an oxygen reading of 95-100 while sleeping. When we brought Romeo home from Guatemala years ago, the hospital staff freaked out that his numbers hit 82 occasionally. The removal of his tonsils and adenoids ended the 2 month long search for what was wrong with him health-wise. So we have some knowledge/experience in this area. But even with Serenity's tonsils and adenoids out, she was in the low 80s, dropping into the 70s. This was not what was expected!
This lead to a holding pattern at the hospital - they wouldn't let her come home because of the numbers during the night were so bad...but they didn't know what to do to improve the numbers...so just endless hours turning into days of waiting. On Sunday, it was proposed that she have a trach tube installed. I think that was the moment I finally understood how critical this all was - not just urgent, but critical. We obviously have been-there-done-that on a lot of medical issues, but it still doesn't make it easy to dive in happily to such a huge event. Thankfully, I am in touch online with many moms with different medical experiences. They were able to tell me that it would be much like the g-tube; scary at first, but doable.
But this set up a whole new set of circumstances - mainly how to cover work for Handsome during a long hospital stay. Just as we got the "troop movements" put in place (as all the planning here is called), the doctors on Monday afternoon took the trach back off the table and sent her home with oxygen and monitors while they came up with a plan. Relief....temporarily.
Deep sigh...more medical equipment and monitors. I was pretty surprised at my dread of another medical adventure, as this is exactly what we knew we were getting into. I guess even when the head and heart are right, the emotions can be very hard to combat. The first two nights were really bad. I was up at least 11-12 times each night. The first night was all due to the sensor coming off her finger. So, I had to get up and replace it and then the machine would reset. The second night was a combination of the sensor coming off and her oxygen dropping below the 82 mark - one time even down to 69! This is brain-damage territory - really not good. The last two nights were much better. In fact, last night it didn't go off at all! But I know from experience that this is just the beginning of a very, very long journey.
This was emphasized by several phone conversations I had with several doctors. There are a great deal of conversations/meetings going on in the background of what to do next. The main doctor does not want to attempt anymore surgeries (the oxygen concerns are the same for surgeries as they are for sleeping) until her airway is more "secure"....but they don't know how to secure it without surgery...and round and round it goes. The next step is an official sleep study done at the first part of September and then conversations/decisions from there.
I think it is hard to wrap our heads around how serious this is because she is so healthy during the day. In fact, the doctor said, "We are just in amazement that she can be so healthy and happy during the day with such low oxygen numbers at night." Hmmmm.
I know that the plan includes a surgery in 3-4 years that pulls the front part of her face forward. This is major, major surgery - like halos and facial braces holding the front of the face out, etc. (With kiddos with Aperts, the front triangle, including the nose, does not grow at the same rate as the rest of the face, causing this area to "sink" into the face.) This surgery will help pull out the area around the airway, hopefully eliminating the breathing issue. If they do this surgery too soon though, they will have to repeat it in her early teens. Oh, no! However, if they cannot come up with another way to ease the problem, this is exactly what they will need to do. BUT this leads back to the airway needing to be secured, especially for such a massive surgery - which puts the trach tube back on the table. Oh how my mama's heart hurts!
As always this time of year, my thoughts and prayers are full of what we need to do/change/adjust/expect for the next year to begin. (Our lives do revolve more on the school year than the calendar year) I am trying to assess what the issues with Serenity will mean and how to plan for it. This includes new sleeping arrangements so she is with me and I can take care of the monitors...which means Hope needs to be moved. She has been with me because she still fusses a great deal some nights. It is very much like a chain reaction in the effects. One of the things I have noticed with the very large family is that many things that seem "small" in comparison can throw off the smooth (or relatively smooth) system we have in place.
I need to get the morning rolling as we have a birthday party for our summer birthdays tomorrow...which means making cakes and cleaning today. I love having company but the preparation ahead of time is really difficult. We live in every inch of our house...so it isn't like we can clean it once and be done. We need to "major" clean it and then keep updating the cleaning until the company gets here. Sounds tiring, doesn't it?
Please pray for Susanna. I cannot imagine....