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At our house"potty talk" isn't allowed...until lately...obviously we have had lots of potty discussions - with Charity's bladder issues - and I am quite sure that much has been overheard by the littler fellow in the family. He likes to encourage himself in the bathroom, by giving a little pep talk before and during his pottying. Overheard the other day, "Why dat water comin out dat hole...why, why, why?" And, in answer to my insisting that he point it the toilet bowl direction while he is going, instead of toward the wall and towels, "Mom, it go dat way all by isself!" Ellie came bolting into the house the other day to tattle, "Mom, Harrison said, 'pee-pee'". Sure enough, Harrison followed her with a big grin and agreement that yes, he had indeed, said the P word. What to do? Bathroom talk is a favorite topic among 3-7 year olds (at least around my house), thus, the rule of no unnecessary Potty Talk... In similar news, Charity continues to battle bladder issues. She often wakes up at night, although there have been some all-night sleeps lately. We are planning to talk with the doc on Monday to discuss our options. Complete reconstruction is one, and the other temporary fix would be a vesicostomy - not to be confused with vasectomy ( I know because I googled it)! Happy Thursday! |
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What a fun way to spend the morning with my children. Berry picking is definitely the way to go. The farm that we like to go to is about 45 miles from San Jose so it is a significant car ride, but everybody did well in the car, listening to stories, and we were there before we knew it! We picked strawberries, olallaberries, and boysenberries, and yes, we did a bit of sampling. Too bad I forgot my camera (as usual) and couldn't take a berry cute berry-covered face picture of Harrison. After pickin' berries, we ate lunch, played and headed home. Our attempt at strawberry pie went fairly well, so I think tomorrow we will try again and maybe even get the pie crust less crumbly! Baking rule #3: as long as you add sugar, things just generally taste good! Added thought: G-tube feeding is rather nifty...feeding Charity while the others were berry picking or while driving...definitely less complicated and easier than I thought - you all were right who commented on how it would become second nature! Have a berry happy day! |
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The weekend was HOT around here, and we attempted to be cool as cucmbers. Managing to have fun in spite of the heat, we did lots of home fix-it jobs, and squeezed in a choir performance and church potluck. By Monday we were all feeling a little pooped! Charity had a check-up with the earnosethroat doctor (that's ENT for acronym lovers). He has been with Charity throughout her hospital stay, so it was fun to see him outside the hospital, and relate all that has gone on since we spoke with him last. Early August, Charity will need to go into the OR again for a look down her throat to make sure that the trachea is healing and clean up any scar tissue that may or may not have built up. This will be an out-patient visit, though an all-day affair. In the meantime, I have been having headaches like crazy and am trying to figure out if my diet has changed, or what exactly is going on. Because I felt so yucky this morning, dizzy and tired and headachy, I couldn't even get up out of bed. Will needed to get to work, so I gave the kids the "assignments" for the morning and fell asleep. I am not sure why I was so surprised, but they were absolutely wonderful. How do I know this - since I was asleep? Well, Charity had been fed, changed (a poopy diaper), and given medication; Harrison and Ellie had a point system going based on how well they listened (designed by Tucker) and everybody was very cheerful, letting me know that if I needed more sleep, they were up to the task... Tonight is better in regards to the headache, and I'm so pleased that my children survived and flourished in spite of my half-comatose state throughout the morning! Tomorrow we are going berry-picking, so I'd better head to bed and hope for lots of sleep, with dreams of plump, juicy berries! |
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Other than the fact that Charity wasn't fond of the tests themselves, she made it through like a little champ. The testing took about one and a half hours and was a bit exhausting for Tucker (who came with us), and myself as we made every effort to sing and dance, blow bubbles, and clap like crazy trying to make her happy and relaxed so that the machines could examine her bladder. It became evident very quickly that she still has severe reflux. Almost immediately after beginning to put the radioactive liquid into her bladder, the liquid began to reflux back up the ureter into her kidney. There was reflux taking place on both sides of the bladder, and rather than keeping a lot of the liquid in her bladder, she instead sends it back to the kidney. Her bladder should hold 150 ml, but instead holds about 25 ml or so. The rest shoots back out. The tests showed clearly that she was experiencing contractions in her bladder, showing that she was trying to urinate but was unable. This continues to cause her discomfort particularly at night. The doctor feels that the best option would be to do a procedure to allow her to pee-pee through an incision into her bladder (can't remember what that is called) until it is determined whether she should have more major surgery to repair damage or at least fix the anatomy of her little bladder and ureters. Once again, we are met with a lot of information and several options to "choose" from. We are reluctant to undergo unnecessary procedures and want to limit Charity's operations and procedures, so we hope to understand a little better and make a decision on how to best proceed. We are thankful that Charity is growing, and gaining strength each day, in spite of her bladder discomfort, she remains happy and a joy to be around! |
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OK...I admit...during prayer time night before last, I opened my eyes and peeked. There they were, sure enough. One, two, three, four, and five little children sitting on the couch in front of me. Each one listening to Daddy's bedtime prayer - a couple were doing their own peeking! Thank you Lord, I'm overwhelmed! Also, for anyone wondering, in regard to our shopping yesterday, not only did we make it there and back, we also ran into one of Charity's nurses from the 3rd floor. Can you believe she lives right around the corner from us? Today, Charity had an Occupational Therapy appointment at the hospital, so we took the opportunity to visit our friends in the PICU as well as a few nurses on the 3rd floor. We stayed a bit in the PICU, as we spent the most time there and really do appreciate those folks. Chloe baked some of her special recipe cookies to share with the nurses and docs...I got the feeling they were glad we stopped by :) tomorrow is her big test day, so she and I will leave at around 7:30 in the morning for the appointment at 9am. We hope that the tests will go well, and will help determine the root of her problems in the bladder. She will most likely be unhappy during the tests, but it would be lovely if she were calm and relaxed so that things go as quickly and smoothly as possible. |
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....no regular blog updates lately... That would be most likely because I (the mommy) am trying to remember how in the world I did laundry, made dinner, managed a household with all of my little peeps present and no grandparent helpers :) Yes, this week, I am "on my own" and getting along pretty well - I'd like to think, however, I'm pretty sure it might take me a bit to get readjusted! It is with great thankfulness, that I think back on all of the meals people brought our family during Charity's hospitalization, since I was hardly able to think beyond the next five minutes sometimes, let alone think of preparing dinner for my hungry group. I am also so grateful for the laundry machine that kept humming throughout the day, keeping my family in clean clothes. Grandma is pretty serious about laundry and getting it folded and put away! Not to mention all of the walks and odds and ends jobs that were done by grandparents. I had several personal shoppers who kept the fridge and closets stocked with toilet paper, granola bars and other life necessities... So, back to me, and the present moment...I am grateful for sure to have all five children here with me, and though we might have a few "moments" what could be better than being together again? What fun to attempt the first grocery shopping trip with five kiddos again...I can hardly wait...REALLY!!! |
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So, Charity didn't end up having tests done this past Friday. Things didn't work out, not sure why, but the hospital called and said that they were unable to have her come this week. We are schedule "for sure" this coming Friday. In the meantime, she continues to have discomfort urinating, particularly at night, perhaps because she notices the discomfort more at night than during the day? Either way, we are anxious to see the test results, talk with the doctors and find a solution to this one last - hopefully- major issue. In the meantime she is gaining weight, and is happier than we remember her being ever before. She loves being with us at home and though she is more clingy to Momma, she is glad to be among us all... It 's been a busy week and a full weekend already, tomorrow we are hoping to make it through all of church, without serious issue, (see last Sunday's post) but you never know... |
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After having difficulty urinating, the doctors asked me to get a sterile urine sample to rule out another Urinary Tract Infection. I was pretty sure that she didn't have a UTI, but didn't know why she was having so much trouble. We scooted over to the pediatrician's office to have a catheter put in to obtain the sample. Obviously Charity didn't enjoy that and we were all relieved when it was over - especially since the preliminary findings showed no UTI. Last night, whether due to the earlier cathater or not...Charity did not have a wet diaper the entire night. She had been crying and squirmy off and on throughout the night, so my plan was to take her in due to her discomfort and pain. Finally, in the early morning, she wet her diaper and has had good wet diapers all day. In light of all of this, the nurse from Urology called to let me know that they were trying to move Charity's tests up one week. So...we are on-call for tomorrow. If all goes well, we will be heading to Lucille Packard for a myriad of tests to help determine the cause of the reflux, the severity and the plan from there. We are all glad for this, since we want to figure out for Charity's sake what the issue is and what can be done to help her. Aside from her "pee-pee" issues, she is happy, smiling, babbling and generally happy to be home with her fan club. She is breathing easily these days and nothing major went amiss today with the G-tube :)
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So...things are moving right along since we came home last Friday. We are so thankful each night to have Charity here in our home, and we never stop giving thanks that she is alive and doing well. With that said, we are definitely having our share of bumps in the road and mishaps with the G-tube! I think maybe we have done just about everything wrong that one can do with a G-tube, but..maybe not? We have squirted ourselves with medicine instead of making it into the tube, run the pump without everything attached, and forgotten to close the little "doors" or ports before starting things. Our biggest mishap was last night - no one knows for sure what happened, since we might be a little sleep deprived, but around 6am, the beeper went off telling us her food was all gone. It was all gone for sure, out of the tube, but most of it never made it into her tummy as it was covering her and the bed. It appeared that some of her previously digested food also found its way out onto the bed... Good times with the Gouldings! All in all, the G-tube hasn't been too hard and even though we are trying to make all of the mistakes in the first week, we are glad that it is working out so well and feel fairly confident that eventually we will get the hang of it all! Charity is recovering well in all ways except for her bladder. She has been having increased difficulty urinating. We find this especially true during the night. She wiggles around and fusses until she is able to pee-pee. She relaxes, smiles and goes back to sleep. This makes for disrupted sleep for Will and I, as well as Charity, so we are hoping to move our urinary tract testing up a bit. She is adjusting back to home happily and enjoys being around the noise and glad times again. |
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Things are always interesting in our household. Apparently we haven't had enough excitement recently, and so, decided to take a trip to the ER Saturday evening... The day had gone well, we all enjoyed our rest and relaxation, learning together how to most efficiently give Charity feeds and medications. Everybody was feeling great, most of all me, (mommy), glad to have our girl home at last. Then, as I laid Charity in bed, preparing to hook her up to her food for the night (she receives feeding every three hours during day and 8 hours continuous feed at night) I leaned on the attachment to the G-tube and heard a horrid pop noise...sure enough out came the G-tube! In it's place was a small incision which we hoped would stay open long enough for the doctors to replace it. Once the 6 weeks have passed, should the G-tube come out again, we can simply place it in and blow the balloon ourselves, but because it is still fairly new, the doctor puts it in and takes an x-ray to make sure that it is placed correctly. Surely, if you have been in the ER at nighttime, then you can relate to our 3-hour wait - which thankfully ended happily, g-tube replaced and on the road to home. Thankfully a gracious neighbor came flying over to wait with the other sleeping children while we whisked Charity away to yet another hospital procedure - poor little girl! Nighttime was short, and made shorter by the fact that Charity is experiencing withdrawals in the form of diahrrea. Not a nice thing to clean up at 3am! After that she smiled and cooed and went back to sleep happily - but OH, the laundry :) Church this morning was wonderful...until the sermon began...Charity decided to have another blowout right on me and Chloe. It had to be the biggest explosion I have ever changed, and I am afraid that we rather disrupted our poor pastor by our complete panic and lack of a game plan! We have to come up with a better exit strategy for sure. Now, home, we still can't help it, we are elated that Charity is here with us, no matter how inconvenient things are and how disruptive life continues to be, she is a miracle and our constant reminder of how gracious the Lord has been to our family... |
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For real..... We made it home.... Charity is now asleep in bed, with food hooked up to her g-tube set to run all night. It took us about an hour to figure out how to give her meds, hook up the milk and get her to sleep, but we did it! No telling how the night will go, but we are sure grateful to have her home... We spent the day getting last minute instructions, picking up prescriptions, playing in the playroom one last time, and of course saying goodbye to our friends. We saved our visit to the ICU where Charity spent the majority of her stay, for the last. Some of us (won't mention any names) got a little emotional. So amazing to walk through the hall remembering where we have come from, and realize that it is indeed a miracle that we get to take her home. She was happy to ride in the car and listen to music, and happy to get home and see her toys. Now, we are happy that it is bed time :) How good God is to allow us to be together tonight as a family...once again. |
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Charity continues to do well and all of the family is learning all about the G-Tube and how to feed her, give her medicine, clean it, remove /replace it if needed. The nurses and doctors have been so patient with us as we learn more each day! Charity did take take a test yesterday called a VCUG (voiding cystourethrogram) which is where a contrast dye is instilled into the bladder through a catheter and a series of x-rays are taken. This helps determine if she has bladder reflux which would have caused the UTIs, which started us all on this journey several months ago. We found out this morning that she has between grade 4 and grade 5 reflux, grade 5 being the worst. We are waiting to hear from doctors on what this means, but what little research we have sone so far would require another surgery, but we do know now what was the root cause of the UTI. Regarding next steps we are not sure yet, but we are enjoing the day with our girl, She had a wagon ride to the preschool with 2 of her siblings to play with some friends, than her two siblings were going to learn more about the G-tube and do some additional tests on her :), next was a visit from the pain management team to talk about the process of weaning off the drugs - this includes a visit from Carlye the hospital dog and finally in the afternoon Charity will get to go in a wagon ride with her family on the roof top - which will be the first time outside in 10 weeks - yea. The evening time she will get to spend with Grandma and Grandpa tonight before going to sleep. As always thanks for all your prayers, loving words and advice. |
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Charity is doing so well and we are thankful! She is now breathing room air only since midnight last night. Her trachea being opened up has been so helpful in allowing her to vocalize a bit and to move air in and out of her body. She has been pooping with regularity again and seems to be adjusting to her medicines being administered through her G-tube instead of through an I.V. and she is moving quite a bit, feeling comfortable with wiggling her body again. It is hard to imagine that she will be in the hospital much longer, although we still need to learn correctly how to feed her and give the medicines. Any g-tube advice is appreciated :) Thank you for standing with our family, you have blessed us! |
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We moved to the third floor to the Intermediate ICU yesterday, out of the PICU. It was hard to say good-bye to soo many friends, but we plan to continue to visit and bring baked goodies to keep those folks energized as they take care of other families and sick little ones - Thank you to everyone in the PICU at Lucile Packard Children's Hospital, you were such a blessing to our family and to our little Char Char! Below is a short video of our girl!
Charity continues to do well, please keep in prayer her heart rate, right now it is in the 150s and she still has not gone "number 2" yet. |
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It is amazing what bond forms between brothers and sisters, everyone got in this photo except for Tucker. They come each day to see Charity and spend time with her as well as "play" with the nurses. Ellie, received business cards from one of the nurses with the hospital logo on it and a space to write in her name to let people know that she is the nurse on call today. Charity continues to make progress the big test today will be how she does with real formula, last time she had a lot end up in her lungs, so we are praying that she does well tonight and the chest x-rays look good tomorrow.
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As you might imagine we have spent a great deal of time at the hospital lately! During our time there, we have had opportunity to get to know other families who also have children in the ICU. There are a multitude of reasons that children/babies need to be hospitalized, but we are always amazed at the courage so many of these families have. It is easy for us to say , "oh I could never do that" , or , "I could never be so strong", when we observe others going through trials. But as our family has found, no one signs up for these difficult things, yet, if God puts us here, here is where we are. Here in this place, we do what we need to do, until it is over. For some families the waiting until it is over may be a lifetime - most likely a shortened lifetime. We spoke with one wonderful family who has known since early on, that their daughter has a terminal illness. They are trying to make choices to help her live out her days in a comfortable and happy manner. They were in the ICU for a procedure that will help enhance her short little life. Another family has a small little newborn whose heart is not going to last long, and she will need a new one. One of our new friends, knows her little girl's life will most likely be short, and full of lots of medical issues, yet she longs to do everything possible to get her home and resume life with her other children. I find these men and women courageous. Not one of them would ever choose to see their children suffer, yet, by getting out of bed each morning and making their way to the hospital, they show courage. Courage to face whatever comes, courage to deal with all being in a hospital entails. Might I encourage you, to invest time in a family who has a chronically sick child, or one who has lost a child, or who visits the hospital frequently. These families will encourage you, and they will be grateful beyond words, however, they probably can never repay your kindnesses. Pray for us, as we want to encourage our friends, and hope to share the hope of Christ with some of these families we meet. He doesn't take away the pain, but His grace and mercy are surely there in the midst... |
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Charity is becoming more and more alert each day. She apparently likes to sleep in the morning, play in the afternoon and then, really play in the nighttime! She played happily with her toys throughout most of last night, then slept the entire morning! She enjoyed the brothers and sister and grandparents visiting in the afternoon and we are very glad that she was awake so we could enjoy her a bit! The doctors are thrilled with her progress and feel that she will make a good recovery...in the meantime they are watching her closely since she continues to need a lot of oxygen and has trouble coughing up the fluid in her lungs. No one wants to see her get pneumonia, and so without injuring the new and improved trachea, the respiratory therapists will be suctioning much more during the night. Hopefully as she gets stronger, she will cough with more gusto, and begin breathing only room air. With the trauma from the surgery, lying in bed for a number of weeks now, and lots of intubation and ventilation, we think she is just needing a little time! |
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Charity slept all morning and woke up late this afternoon. About an hour or two later she had her CPAP removed and now just has a nose canula. She is doing well and now starts to be slowly weaned off her drugs, they are also planning to remove the cathater later today or tomorrow. We have enjoyed her this afternoon and she is starting to wave good bye to folks, yea!! Her biggest obstacle right now, is keeping her lungs clear. She doesn't want to take big breaths, and sometimes holds her breath. Obviously this doesn't help with oxygenating her blood! Certainly it must hurt to breathe and cough etc. She appears to be doing well overall and time will tell how her trachea will behave and perform, but we are hopeful and glad to see a little glimpse of her sweet spirit today!
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Charity is feeling a little blue this evening - she can't really understand what all the fuss is about. All day everyone seemed delighted that she was getting extubated - no more breathing tube, however, now she finds herself with the CPAP on. This is a fancy little triangle shaped deal that covers her nose and blows oxygen and pressure into her lungs to keep her breathing the way she should. She is also waking up more and feeling the effects of open-heart surgery. She doesn't like it! Poor little girl is rather sad and disappointed with how life is progressing at this moment. Hopefully over the next day or so, she will adapt once again and decide that things aren't really so bad after all. In the meantime, she has continued to de-sat, which just means that her oxygen levels drop off and on throughout the day. Her right lung has a bit of collapse, not a lot, just enough to need some help with breathing. We weren't expecting this, and it just shows that we need to remember recovery is up and down sometimes... We are thankful that the doctors were delighted with her "new and improved" trachea. It is bigger and better and hopefully will be the answer to Charity's problems! She is still adorable as all get-out and we are thankful that so many have been praying for her... |
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Ellie and Chloe brought their toenail painting book with them to the hospital yesterday - thankfully Charity's nurse is very skilled at painting little tiny toenails...since the result was very cute ladybugs on all of Charity's little piggies!
We got a surprise this morning, finding out that the paralyzing drug was to be turned off, and Charity would be allowed to wake up. Needless to say, we have all enjoyed watching the 'reawakening'. First, she moved her hands and her eyes twitched a bit, but by early evening, she had figured out how to get those heavy eyelids all the way up. By the time we left to get dinner, she was moving her head up and down in time to the music, and doing a slight wave with her hand. We are so thankful! The doctors decided to keep her a little bit more sedated tonight knowing that she has already pulled out her tube once, and might try it again...so, she is a bit more sleepy now, but is still trying to keep those eyes open as much as she can!
Tomorrow, the ENT team will take her back to the operating room to look down at her trachea and make sure that everything looks OK. If so, she will be extubated - that means no more tube stuck down her throat, and the real waking up will begin along with weaning off of the meds... |
