Tuesday, September 29, 2009
Then, we did our usual shopping errands and headed to PT AND OT. Sumana had already done her respiratory and PT exercises this morning (VERY grudgingly, I might add!). By the time she got thru with all of her upper body and leg exercises she was whooped! She really worked hard and Miss Kristen and Mr. Darryl seemed pretty pleased with her efforts. If we can just keep her motivated and work around her emerging 'attitude', she will be VERY strong and healthy, very soon!!!
Sunday, September 27, 2009
Anyway, Sumana really had a good morning and then ate another HUGE lunch and dinner. (Still sounds like good news to me!!!) One item of prayer tonight, though. We have a pre-teen with us tonight. She actually was placed with us in cooperation with the Sheriff's office. I think it's a long story, but I didn't ask. Our job is to give her a safe place for the night. She's settled down alot already. Hopefully it'll be a quiet night. (please pray to that end!)
Saturday, September 26, 2009
Now just in case you're thinking it was a one-time deal . . . NO! She has been eating like that all day today! I hope this means she's getting on the healthier side of things! I only gave her one albuterol/cough assist treatment today (only 2 yesterday!). She really seems to be doing well.
She is very anxious to get to Kids choir and church tomorrow (she missed last week because she was sick). I keep hearing about all these colds and viruses that are going around and I can't help but be nervous about her being around germs. Here's how paranoid I am: I called my friend who's a nurse and asked if she had any face masks that Sumana could wear. (She's not sure if she has the medical kind, but her husband thinks he has the painter kind!!)
I hate to make her wear one, but we can't afford to have her get sick. Greig's youngest nephew gets married next weekend in Pennsylvania and she CAN'T get sick!! I know I should have faith that God will protect her from 'whatever' is out there, but I also want to be smart about helping her stay healthy. She has been sooooo good with using a liquid hand sanitizer. I even got her her own bottle that she carries around with her! I just plain freaked out by how a simple cold with Sumana becomes pneumonia within 24 hours. UGH!! I guess besides praying for our whole family's health, you can pray that Sumana will survive her crazy mom's antics!!!
Friday, September 25, 2009
Sumana still seems pretty healthy. She had more symptoms at bedtime last night, but she's seemed good so far today. She also got a whole day of school in. We actually have two whole weeks of school done! It's great to be able to 'double up' when we get behind. If we can get in some more good days, we should be able to get back on track with our initial school plan. Hip, hip, hooray!!!
Tonight, all three of our older kids have plans. This means Sumana gets to go out for fish fry with Mom and Dad and their friends. This should be interesting! Maybe I'll remember the camera this time!! LOL!
Wednesday, September 23, 2009
So, we actually stayed home ALL day! I even took my long awaited nap! Tomorrow Sumana has PT in the afternoon, then hopefully we'll be home again on Friday. I could really get into staying home again!!! Yeeeeee-hawwww!
Tuesday, September 22, 2009
The whole day was much easier for both of us. Except, of course, the fact that I had already planned to be in Canandaigua this afternoon. She did pretty well in physical therapy and even did some modified sit ups (first ones since the surgery!). Then, she got to meet Mr. Darryl for her occupational therapy evaluation. It was pretty clear that she's got some post-op issues to work through. Some of her goals are to be able to put on shirts independently, drink from a cup and raise her hands above her head without pain. Pretty reasonable, huh?? In addition to these post-op goals for her right side, she will also learn some exercises that should help strengthen her left side (which is affected by her spina bifida).
So, that means PT and OT on Tuesdays, PT on Thursdays. She also will probably be going back to her primary doctor tomorrow to make sure she's finally on the road to recovery. Whew! I'm ready for a nap!!! LOL!
Monday, September 21, 2009
Sunday, September 20, 2009
So, even though we managed to get out to Crosswinds last night between treatments, we couldn't swing ANYTHING at Middlesex Baptist today. Tomorrow I'm cancelling her brace check up so that she only has her post-op appointment with Dr. Sanders. Hopefully, that will help keep her on the 'healing track'. Thanks for your continued prayers!
Friday, September 18, 2009
We ran some errands and before I had finished all the errands, Sumana 'hit a wall'. She started coughing and having trouble breathing. So, thus ended the errands . . . postponed til another day. We came right home and got the albuterol and meds going again. She definitely is still dragging tonight, but sooooo much better than yesterday!
Sumana has an adjustment scheduled for her braces on Monday and the ever-anticipated post-op appointment with Dr. Sanders later in the day. That'll be an exciting day!
Thursday, September 17, 2009
We got in first thing to see Dr. Byer from Sumana's primary's office. Once again, it's her left lung that's the culprit. He's concerned enough that we go back to see him again tomorrow morning to make sure things aren't any worse. In the meantime, we're going to squeeze in 4 respiratory treatments today and have started on an antibiotic. I also informed Dr. Voter (her pulmonary doc) of what's going on. So, I'll keep you posted.
I've been pondering the title "Sumana's Faith" lately, too. Faith is an unquestioning belief in something, a complete trust, a resolute stand. What a tough word! I can see that while my faith in Christ has always been there, I certainly have questioned and wavered a bit in His plan for our family. His way is always best, but that doesn't mean it's easy! In regards to Sumana, her faith in Jesus is so real . . . it's beautiful to see. And then, when you consider her determination to overcome challenges in her own life . . . WOW, what a package! She really is such a blessing! Please pray for her health today and for wisdom on my part to know who to call and what to do. Thank you!
Monday, September 14, 2009
Sunday, September 13, 2009
Thanks to the Ronald McDonald House and lots of prayer, I adjusted really well to PICU life. I stayed with Sumana the majority of the time, but I got out to the play deck almost everyday, I got a good night's sleep most nights, and there was always plenty of food in the RMH frig to choose from. However, I'm thinking I adjusted a little TOO well.
When my dad picked us up last Saturday to take us home, I had the most bizarre experience. EVERYTHING was overwhelming to me: the sun, the crowds at Wegmans, the noises. Yikes! I guess being isolated in our little PICU room really had an affect on me. We had plenty of visitors and there were plenty of noises and plenty of nurse interruptions, but I really adapted to them. I guess it was still a controlled, predictable environment, (in an ICU sort of way!)
I realize you probably can't relate and it may not seem to be a big deal . . . but, WOW! Did it ever affect me! Today, I took Sumana to Sunday School and I had a very similar reaction at church. It really has something to do with crowds, noise, etc. It's funny that shopping at the outlet didn't affect me . . . of course it was very quiet/uncrowded there and we had a specific objective.
Anyway, it's not a very pleasant feeling. Hopefully, I'll get over it soon. At least we've adjusted well to being home. We're down to three respiratory treatments a day and I only have to get up once at night to help Sumana to the bathroom. It's just amazing to me to think that we've only been home a week and Sumana is doing stairs, walking to and from the van, and actually PLANNING on going to AWANA tomorrow night. God is GOOD!
Saturday, September 12, 2009
Friday, September 11, 2009
After our morning respiratory therapy I asked if she was up for shopping. MY GIRL, said 'YES'! So, we made a trek to the Waterloo outlets. Sumana got some new shirts, dresses, pants and sweaters. She had sooo much fun! She loved telling the sales people that she had surgery and grew so much that she needed new clothes!!
Because she slept in so late and then we did the 'shopping trip', I decided today was a good day to try three respiratory treatments instead of four. Sumana did not cough AT ALL today til dinner time. I think I'll see how the night goes and how she is in the morning. If it goes okay, I think we'll call three treatments 'good'. Somehow, three is so much more manageable than four. I'm sure Sumana will be happy for the change, too!
So, 'back stories', I already am out of time for them. But as a reminder for me, and a teaser for you, I have stories about the PICU and PICU withdrawal to share. Also, I have new 'after' pictures of Sumana's back, but they really don't show the change. I'm going to try some different angles and try to get her to sit 'straight', now that her back allows her to. (Miss Kristen noticed that she is still sitting 'lopsided' out of habit. Something else to work on!)
Wednesday, September 9, 2009
Tuesday, September 8, 2009
Monday, September 7, 2009
Sunday, September 6, 2009
Now, mind you, though it is wonderful to be home, it is NO picnic. We have to provide aggressive respiratory therapy every 4 hours around the clock. Add in frequent bathroom breaks (we're still pushing fluids), and that means we rarely get an hour break. That was particularly hard last night, I didn't get more than 2 hours of sleep at a time; I didn't officially 'get up' today, til 3pm!
Friday night was rather 'memorable'. Sumana was experiencing a lot more pain and discomfort when she was 'cupped' (whacked on with a respiratory mask). So, I offered to stay with her til after her midnight regime. Then, I planned to go up to the RMH and sleep on an air mattress. But when midnight came, our nurse got really busy and didn't do the cupping. By one a.m. I went to ask her about it, and a resident told me it looked like we would be moving 'to the floor' soon because they had several new patients coming in.
Long story, short: We didn't move til 3:30ish and by the time we got settled in and ready to sleep, the orthopedic resident came in to make sure she was okay and THEN the x-ray tech showed up. UGH! We didn't get to sleep again til 5:30!! Dr. Sanders came in at 8ish and said he thought we could go home. I was a little uneasy because her PICU doctor hadn't seen her chest x-ray yet. Dr. Van der Jagt was more than happy to look at her x-ray with me. We saw definite improvement, but still lots of fluid hanging out in her chest cavity/lungs. Dr. Van der Jagt felt it was okay for us to go home as long as we maintained a consistent regime of respiratory therapy. He was so pleased, that he even left the PICU to go see Sumana and give his good wished to 'one of his favorite patients'. (she makes an impression on everyone, doesn't she??)
Today, Sumana walked out to the deck several times. Then, this afternoon she wanted to go out to her sandbox!! She walked with her walker all the way out to the sandbox and played for over a half hour. By the time she got back to the couch, she had been up and around for a whole hour! What a trooper!
Thank you, again, for your prayers and support. Please continue to pray for Sumana's healing, especially her lung situation. We're hoping to hang in with 'the plan' til her appointment on Tuesday. Then, hopefully, we can drop the nighttime therapy. Also, I'd like to ask you to pray for my health, too. I usually have a hard time staying healthy when I don't get enough rest. I'm hoping to break the cycle this time, so I can be there for Sumana.
Friday, September 4, 2009
Her PT, Miss Kristen, visited today and was able to give her some exercises to do in bed (PT has not shown up YET at the hospital--UGH!!) She also is on a strict respiratory program . . . cough assist machine, cupping, some kind of sucking contraption and a couple other things I can't remember right now. She started the day by sitting for 8 minutes every hour, then up to 11. Once Daddy got here with the wheelchair and she got in it, she was up for an HOUR!!! We took her to the playdeck with Miss Melody. When we came back to the room, the occupational therapist was there, so she stayed 'up' to do some work with her. (She is showing lots of decreased motion and pain in her right arm).
She also started eating food yesterday and tonight downed a ton of spaghetti and meatballs, broccoli and carrots, a roll and a container of pudding. (That sounds like a girl on the road to recovery, huh??) To top it off, she is walking with help to the bathroom and even tried a few steps with her walker!
Dr. Sanders told us this morning she 'might' be able to go home tomorrow. I think she's made enough progress today that if her x-ray looks better tomorrow it may actually happen. I think Sunday is more realistic, but if we can go sooner we'd all be happy about it!
Thursday, September 3, 2009
It was pretty funny at first, but quickly became kind of scary. I went from laughing to crying . . . (I think I was the psychotic one!!!) The doctor explained the effect of sleep deprivation (who would've thunk that one is not sleeping when sedated???!!!). Sumana had a combination of days and nights being mixed up, withdrawal from her pain meds and overall disorientation. Thankfully, when the sun came up, she was much better. Also, at the same time she was finally allowed to get some morphine . . . she had only had Tylenol throughout the night because I told the staff i didn't want to go through the withdrawal twice!! Poor kid!
Greig came to the rescue early and right after the doctors made their rounds, I headed upstairs and got 3-4 hours of sleep!! What a relief!! We had lots of visitors today, greatly in part to one of our neighbor's sons being just a few doors down the hall from us. Those visitors got 2-for-1 day!!!
With all of Sumana's thrashing around last night, she pulled her chest tube out part-way. The surgical team completely removed it this morning, but there continues to be a lot of drainage. She also developed a lot of chest pain on the right side this afternoon, so they took a THIRD chest x-ray to see if the fluid was building up again. The oddball result is that her LEFT lung is showing signs of collapse!! UGH!!! So, she's going to get cough assist workouts every 6 hours, cupping and PT every 2 hours (4hours at night). Hopefully, this will help her out. But, I anticipate another LONG night. She is dealing with a lot of pain and we're trying to manage it wisely without wiping her out (she doesn't breathe effectively when she's sleeping).
The positive for today are that Sumana kept her ventilator off, got the chest tube out and got her feeding tube out. She also had grilled cheese, tomato soup and chocolate pudding for lunch. 15 oz. of apple juice as a snack and a chicken finger for dinner. She also has increased her sitting angle to around 40 degrees. So, even though she's not out of bed yet, I guess she made a lot of progress today. Please pray that it will continue and that as she starts moving around, her lungs will clear out. She's giving us all a run for our money!!!
Wednesday, September 2, 2009
I was concerned that when they extubated Sumana, they would send us out to the 'regular' floor. However, she is considered high-risk, so they're going to keep a close eye on her before they send her out. I have even requested that they keep her here til she goes home. As long as there is adequate nursing staff, they will honor the request and just drop her level of care to that of a normal floor. Please pray that she would be able to stay here. I really feel the doctors understand the complexity of her pulmonary issues and I'd hate to try to have to go through the 'learning curve' with another set of doctors when she's already on the road to recovery.
And, FYI, I got to stay in my Ronald McDonald House room another night. I haven't heard if I will still have it tonight, or not. Actually, I'm not sure if Sumana will let me leave her. We'll have to wait and see. At any rate, I have an unrestricted pass to the House til September 10 (I hope we're long gone by then!!)
Tuesday, September 1, 2009
As for the offers of help, we're doing pretty well. Enough visitors to help pass the day and give me a chance to go outside for lunch or get a nap, but not so many visitors that it's a revolving door. Greig is doing a great job of keeping up with the kids at home. It is nice that we have two extra drivers and two extra cars . . . it keeps them occupied . . . but hopefully not in too much trouble!!! (LOL) I also think that food is quite plentiful as well at home.
As an update, Greig was able to be at the hospital early enough to hear the doctors chat about Sumana during their morning rounds. Once again, I'm loving the medical school part of the hospital. Since there are all levels of residents in the unit, there seems to be teaching going on at levels I can actually follow. Sumana's chest x-ray is a little better again today. However, there are more noises during the physical exam, so there is still 'stuff' in there that needs to come out.
Her different blood tests are mixed results at this point. Thankfully, the carbon dioxide levels are dropping and her pH levels are improving. I guess the sodium and chloride levels need adjusting now. Since she's tolerating her 'food' now, they're going to back off her IV fluids and see if that will help the levels to adjust themselves. There's so much chemistry involved . . . it really is pretty interesting!
So, they say 'maybe tomorrow' for losing the vent. They are going to prep her like they did Sunday: cutting ALL fluids (including sedation and pain meds) and backing off on the vent settings. She is soooooo ticked off when she is 'awake' that she can raise her pulse and blood pressure to set off the alarms! I am going to give her some paper and pencil today and see if that will help her communicate. Her spelling is really bad, though, so I don't know if it will be much easier to decipher her handwriting than her lip movements!