And hopefully it will the last time....
For those of my readers that like the quick overview, here's what has been going on:
-All kids came down with bad cold within 5 days of first outbreak (starting on 11/5)
-Esther got the cough but had improved by day 4 (last Tuesday)
-Esther gets rushed to our local ER with respiratory distress Wednesday night and is admitted with Jessica staying with her
-Thursday morning Christy goes to Seattle Children's for her scheduled G-Tube placement/tonsils & adenoids removal, Esther improving throughout the day
- Friday morning Esther takes a turn for the worst and is sent via helicopter to Children's Hospital
and at the same time the Rapid Response Team was called in for Christy due to continued increased -need for breathing support. (Jessica goes in helicopter, Daryl drives down here)
-Friday afternoon Christy improves after some respiratory work and breathing treatments, but Esther ends up in ICU
-Saturday Christy is improved enough to be discharged, so we get a hotel for Jessica, Reuben and Christy (Jessica's fiance, Jon, brought Reuben with as a chaperon but ends up staying as support for Jessica).
-Sunday - Esther is finally no longer getting worse but is not improving either, Christy is brought to ER late in the day, but the redness/discharge is normal so they go back to the hotel. Esther has another miserable evening and needs higher level of sedation to sleep.
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| Esther in the ER the first evening. |
Almost two weeks ago Reuben came down with a nasty cold. 5 days later everyone of the children had it in some way, shape or form. I took Esther to see the pediatrician on Monday just to play it safe, as she had gotten the cough and she has had pneumonia two times before. He said she was doing well, but prescribed steroids to start the next day, but only if she was worse. The next day she was better, so I did not give her the steroids, but continued doing breathing treatments.
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| Napping during per-op |
That same day, Tuesday, we got the call to let us know what time Christy's surgery was to be (we were to check in at 10:45). We talked about this cold (Christy had only developed a small cough over the weekend, but had seemed fine starting Monday), and they mentioned that Christy might end up being sent home if she presented with cold symptoms, so I got proactive and brought her in to see a pediatrician and get her opinion, and she said that Christy sounds and looked great.
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| pre-op, checking out her bracelets! |
Christy had a rough night as she got a hold of Carese's pizza (she's allergic to tomatoes) and ended up being up a good portion of the night with stomach cramps. Esther's breathing sounded fine so I didn't do the "every 4 hours" breathing treatments through the night as I had been since Saturday.
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| All set for surgery |
Wednesday was a busy day with orthodontist appointments and packing for Christy's trip to Seattle Children's Hospital for her planned surgical procedures. During dinner time, Esther began grunting.
After two breathing treatments she was still getting worse so I rushed her to the ER. She was getting worse on the way there even. In the first little while in the ER she declined even further, becoming unresponsive to all but extremely painful procedures. There was talk of sending her to Children's, but then she began to respond to their treatments enough for her to stay there. Jessica stayed overnight with her so I could get some sleep before taking Christy to Seattle Children's Hospital for her surgeries(G-Tube, Tonsilectomy/adenoidectomy).
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| Chiling during Christy's surgery |
On Thursday Christy had her surgeries and all went well, but was a long day. Esther was back on room air and doing remarkably well.
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| Christy in recovery |
Friday morning, Christy had been in a slow increase in the need for oxygen and it was becoming concerning so they call the Rapid Response Team (RRT). While the team of about 8 people were in our room, I got a text from Jessica that Esther had taken a severe turn for the worse and that they had no idea why and she was not responding to the highest level or oxygen that this hospital could give her. Back to Christy - they made some changes, including just having her position changed, and she responded well. But that time, I had been notified that they were preparing Esther to be fown to Children's via the medical helicopter. Talk about overwhelming! But God upheld me through even this.
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| Christy the next morning, just before they called the RRT |
Later I actually heard the helicopter land and was soon able to go see Esther. She was struggling and mad, but working so hard to breath! Jessica went to be with Christy once she had given them Esthers recent history. After about an hour or so, they moved Esther onto the floor (I got to ride on the bed with her as she wouldn't let me out of the bed), just 4 doors down from Christy. Throughout the afternoon we were able to go from room to room, but being very careful with hand washing as they were testing both girls for viruses. Esther was presenting viral symptoms and Christy had some yellow junk come up when they removed her breathing tube after the surgeries.
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| Christy sitting up for the first time |
Daryl has driven down after Esther left in the helicopter, and this was about when he showed up. Being the Daddy's girl that she is, she lit up when she saw him! By this time she had actually sat up a few times and seemed to be recovering nicely! Daryl also got some snuggle time with her daddy, even though she was feeling so miserable!
Over the next couple of hours, Esther continued to struggle more and need higher amounts of oxygen, as well as struggling against using the mask. So they called the Rapid Response Team to her room to evaluate her.
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| Snuggling with Jessica too! |
It was decided that she needed to go to the ICU. Soon she was transferred up there (I road with her in the bed again!). In the end she was given in IV, placed on high flow oxygen and a sedative to help her deal with all the hard stuff of having so much taped to your face and attached to her.
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AFter the decided to move her to the ICU
she actually calmed own for a little while |
When she didn't have enough sedation she was miserable - she was getting ibuterol 24/7 with the oxygen, plus steroids via her IV. These all worked to make her jittery, jumpy, angry and frustrated. She wanted to tear everything off and throw any and all toys across the room. She was miserable. It took a continuous re-evaluating to keep the level of steroids right. Friday night was a long night and I only got about 3 hours sleep, and not all at once. Daryl watched over Christy so Jessica could get some sleep.
On Saturday, Esther had not improved but was no longer getting worse. Christy was getting better and they had determined that she could be discharged. Jessica's fiance, Jon, drove down We decided that the best plan was to get a hotel room and have Jessica and Reuben stay there with Christy and care for her there until We went home or Jessica felt competent to care for her in our busy home (post surgery is quite intensive care - pain meds around the clock, plus G-Tube site care and tube feedings plus watching for infection.
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| Esther in ICU - she looks so little with all equipment! |
The logistics of getting Christy discharged and over to the hotel were quite overwhelming as some things needed to go to Christy's room, and others to the hotel, and we had laundry that needed to be done. God orchestrated things so that I had just the help I needed. I had posted on the International Down Syndrome Coalition FB page, requesting prayer for our situation, and from that Heather Y was able to come and help me out! We had never met, but she has a son just 3 months older than Esther who also has Down Syndrome. We enjoyed sharing our stories and we found that both our kids were at Children's at the same time even! She even brought some toys for Esther and some treats for me! What a blessing and such an encouragement to know that God was orchestrating things for me in such an amazing and special way! She also brought her 8 year old son and I enjoyed getting to know him - he was so sweet and so smart!
Having Heather with me worked so well as she could stay with Christy while I ran errands. She also helped me move things to Christy's room (it was more than I could carry), and she also made it possible for Reuben to get dinner. And then just when we really needed even more help, Daryl's brother and sister-in-law showed up with some nice things for Esther and myself (Starbucks Gift Card Yay!). This enabled me to get Christy out - they helped me move out of the room, pick up Christy's prescriptions, get the car packed and warmed up and on our way! It could not have gone better and it would have been a nightmare/extremely difficult to do it all on my own! I arrived at the hotel just minute before Jessica and Jon did, so they were available to help get moved into the hotel room - another amazing providence as they had been shopping since noon and by now it was after 6 pm, and yet they arrived at the hotel at just the right moment! Eventually I made it back to the hospital with a late dinner for Daryl and I.
That night Daryl stayed with Esther and I to enable me to get some much needed sleep once Esther was asleep (the most sleep in a night in over a week was not much, and interrupted often!). Esther had a very difficult evening, and only wanted me. She fussed and cried and yelled and got mad and was miserable. Finally, after midnight, a does of tylenol (I think she gets headachesand a higher level of sedation finally enabled her to sleep, which meant that I could sleep. Somewhere around midnight I lost it was was crying hard. Esther was starting to settle down then and she noticed that I was crying. She started patting my arm and saying to me "it's OK, it's OK" - well that just made me cry harder it was so sweet and touching. She is so loving and caring so it's doubly hard to see her be so sick and feeling so miserable!
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| Esther Monday morning, finally sedated enough to sleep |
Sunday was another day of Esther staying the same. No improvement, but no regressing either. She had a difficult morning and evening again. Daryl headed home just after dinner so he could return to work on Monday. It was again after midnight before Esther was able to sleep, and it actually took adding a second/different sedative. Having had more sleep the night before and also a nap, helped, but it was still long, difficult evening. Christy ended up with some redness and discharge and Jessica was having trouble managing her pain, so I had her take her to Children's ER to have her looked at. They said this was normal, but to watch for it worsening. She went back to the hotel with Christy and they both had a relatively decent night - Jessica has to get up at least every 3 hours to give pain meds, but thankfully they are given through the feeding tube so Christy doesn't have to be woken up!
This morning Esther was noticeably improving, but Christy had a rough morning. But by adding the third pain med back into her routine, Christy was able be comfortable. Esther was having time of being upset, but she was able to rest comfortably while Reuben stayed with her while I went out and did some shopping.
When I returned, she was fine, but then she started being miserable again, they upped her sedation but it didn't help, it was getting worse. Then the nurse checked her IV (which had been fine just 45 minutes before) and the IV had come out of the vein and had begun to infiltrate into her arm - ouchies! So the doctor came and decided that Esther was ready to go to just a nasal cannula with getting her ibuterol via inhaler. She has done fine! I even got to give her a sponge bath and she got to drink apple juice (she got a feeding tube yesterday as she hadn't eaten since Wednesday and she wasn't allowed to eat or drink when on high flow oxygen or she would risk aspiration). She perked up like nobodies business!
Soon after that we got a visit from Child Life and she asked how they could help us get Esther more comfortable. She was able to bring a portable DVD player with some movies that she had not seen in while, including Toy Story 3! This did help her to calm down. They also brought a cloth doll which she has enjoyed holding.
Esther since then has had very little interest in sleeping, plus they are doing her Ibuterol every hour. I was able to sleep from midnight until 4 am, but found out that Esther had only slept a little over an hour, but had been content to just hang out in her bed while I slept. Since then I've been letting her watch movies. She is still working hard to breath, but mostly just breathing fast and not so much hard work as her airway is much improved, but can be on room air while she is awake. She is still shakey and has not shown interest in getting out of bed, thankfully. She prefers the bed over the recliner too. She has even eaten some jello and continues to drink apple juice so I think they might let her try some real food for breakfast and if that goes well, she will be able to have the feeding tube out!
So today, Jessica is taking Reuben and Christy home, and if all goes well, Esther will go out out ICU and should be going home Wednesday or Thursday!
This has been a most challenging week for all of us, but God has given me grace and strength for each moment. Even though at times I felt overwhelmed and cried, comfort and strength to go on was ready and waiting, I just needed to turn to my Lord in Prayer! Please join me and others in praying that Esther will go home soon and that Christy will continue to improve and need less pain reliever soon and that our adjustment to caring for these two at home (and the long drive home) will go well!
I will try to post again once she is on the floor, but it might not happen. Just remember that in this case, no news should mean good news!
First of all there was Thanksgiving but I have no photos. But we were very thankful indeed as two of my dear friends and their mother came around noon to deliver a complete Thanksgiving dinner for all of us! I was still swamped with medication schedules and getting up all night to do breathing treatments. I had threatened that Thanksgiving might just be chicken nuggets and tatortots! But we had a wonderful, homemade turkey dinner with all our favorite dishes!
O yeah - Jessica began a courtship last June, got engaged at the end of August and got married on January.....but I'm saving the details of the courtship/engagement for a very special co-authored post coming here soon! I will post photos of the wedding here in part 3 of this series though, so hang tight!
We truly enjoyed watching Christy change after her surgery. She had more energy, she was more relaxed and she was biting less! She had some sleep issues still, but was better at night overall. She loves to laugh and loves to play with her siblings. She can get Esther giggling like no one else can. Esther loves her and whenever she sees Christy she goes to her and says "Hi, NG" - that is her name for Christy! They are such a blessing to each other!
Here are also some photos of the super neatly made beds - the boys actually made their own beds and made me come take photos!! I should have done this years ago. But alas, the newness has worn off.....
This is the first attempt with the wedge on top of the mattress - she is so strong she just sat up and lifted the wedge right off the bed! Now the wedge is under the mattress and her sling is "slung" to the mattress!
I'll leave you with some photos of me working on the wedding decorations. I created nearly 50 corsage type decorations for decorating the church, plus about that many unique corsages for the people involved! I also made the tossing bouquet! It was fun to learn, but man it was time consuming! But learning this skill with my first daughter's wedding will reap great benefits with so many more daughters yet to be married!
