We've been posting on Facebook but if you don't know Gwendolyn is in the hospital with a collapsed lung. There are still a lot of unanswered questions, we are waiting for results from a whole new group of tests to try to determine what type of infection she has, and we are taking things day by day. We are seeing some improvements and feel encouraged by Gwendolyn's overall disposition but we are hoping for more answers today and tomorrow. Here is what we do know and a sort of run down of events.
On Thursday afternoon Gwendolyn's heart rate went up intermittently and her coloring was off so she came home from school early. Her oxygen saturation was totally normal so we thought it was a recurrence of constipation/bowel blockage which she was dealing with the week before. We started treating for that with Miralax and prune juice.
On Friday morning she threw up after we gave a double dose of prune juice to try and treat her constipation. She is very sensitive to volumes and we'd never given a double dose so our instinct was the vomiting episode was a reaction to the prune juice volume. We called her doctor and went over all the possibilities: constipation, stomach flu, and aspiration from the vomit. We continued treating her at home and were watching closely for any changes. Gwendolyn never spikes a fever — never — but her heart rate was high, she was uncomfortable, and she had the sweats that night.
On Saturday morning, even though she had not slept well, she looked perkier, her heart rate was lower and her oxygen saturation was perfect at 100%. She definitely wasn't feeling herself and still had periods of discomfort but she had a much better day, read books with Aunt Elizabeth, and we even had a dance party in our family room since she had to miss the Daddy/Daughter Valentine Dance at school. She slept solid with good numbers that night.
On Sunday morning, her heart rate was slightly elevated again but her oxygen was normal and she seemed rested. That evening we gave her a bath which can be scary if she is unwell but she did great during it. After her bath, however, she had a sudden drop during her nightly breathing treatment and now her oxygen saturation was lower than we like — 92. We gave her a little bit of oxygen that night (usually she is just on room air with her bipap) to help her rest and maintain oxygen saturation in the mid-90s, which she did all night. Our plan was to take her to get an x-ray in the morning and see her pediatrician.
On Monday morning her breathing treatment did not go well, she was having trouble maintaining her oxygen saturation on bipap with oxygen, and Bill and I could just tell by the change in her eyes that it was time to go straight to the PICU.
We brought her into the PICU on Monday morning. The doctor on call initially felt it was stomach flu which caused dehydration and thought we'd be home by the next morning after some fluids. That is all she was treated for that day. This seemed to make sense given that the stomach flu is going around. Gwendolyn has never actually had the flu. In fact she's never really had any typical illness: cold, flu, stomach bug, etc. so we don't know how it would present in her in her body. She has, however, had a lung collapse when she was 7 months old. But we haven't faced any major respiratory illness since then — until now. By Monday night, after little improvement in her heart rate with the increased fluids, our parent instinct started nagging that it was more. A full panel of tests was ordered to start ruling things out. Because she doesn't fever and her tolerance for pain is really high we also started wondering how long had this been going on before it effected her heart rate?
On Tuesday morning she looked terrible. Bill and I could tell this was something bigger and started campaigning for more aggressive respiratory treatments (we wanted treatments every four hours with albuterol, pulmozyme, and mucamyst) and antibiotics (clindamycin) to treat any potential infection that may be brewing as a result of aspirating when she vomited. Sure enough her x-ray came back and her right lung was collapsed, fully whited out. We increased respiratory treatments and started to get junk up from her lung. We also started her on clindamycin. There was still that nagging question though about why her heart rate was elevated the day before she vomited.
On Tuesday night she was very tired and during one of her breathing treatments Bill heard two strange pops during one of her cough assist rounds. In hindsight it was probably her lung popping open and moving a bunch of junk around and as a result she had a huge crash and we nearly lost her. They had to bag her to get her back up and she couldn't maintain on her normal bipap mask and machine so she was placed on the hospital ventilator with a full face mask and thankfully she stabilized with heavy oxygen. The full face mask gave her more breathing support without her having to be intubated and it allowed her little body to finally rest. She was also pulled off her normal nutrition and started IV fluid feeds. This was obviously terrifying for all of us and definitely kicked the care plan into a whole new arena.
From here it has been up and down every day. Some things look encouraging while others come back not so good. All the tests that were initially taken came back negative — no flu, rsv or other typical illness. But her white blood cell count and CRP came back elevated and have continued to climb each day even though she's on multiple antibiotics treating a wide range of possibilities. Her heart rate and oxygen saturation are almost back to normal and she is back on her home ventilator and bipap mask and tolerating her feeds again. But then she'll go through periods of higher heart rate and lower saturation after treatments as we move junk into uncomfortable places and it makes it harder for her to breathe. Her x-ray looked better at one point but now seems to have plateaued so we added MetaNeb treatments to her respiratory routine and that has really started to help loosen things. The aggressive breathing treatments are essential to continue to break up the junk in her lungs, move it up, and out. But they are taxing on her and they definitely take their toll. And the doctor is trying to think of other big picture issues that could be the route of the problem so she has had an echocardiogram which showed some abnormality so additional blood work was ordered to check for blood infection, if her numbers stay high then a CT scan of her lung is planned to get a better picture of her lung and why her white blood cell count and CRP have risen so much, and new labs are ordered every day to check new thoughts and monitor her levels.
Bill and I are feeling worried certainly — this is very serious and we know she is walking a very tight rope. But we are also encouraged because her coloring, the twinkle in her eyes, and her disposition seems to be much better. She is tired and has periods in each day where she is clearly not feeling great but she has loved opening cards and presents, wanted to read some new books, and lights up with each picture or video we show her of friends supporting her. Our goal is to keep her focused on staying positive and heading back to school with her friends and home with her little sister.
One thing we are certain of, Gwendolyn is amazing and she is fighting this with everything she's got. Her resilience, determination, and courage are far greater than our own. Once again she is teaching us what strength truly is and we are so inspired by our brave warrior princess.
Bill and I are taking turns at the hospital so one of us is always with Gwendolyn, able to do her breathing treatments, and make her feel safe and secure while the other is getting rest at home and caring for Eleanora. Stress is definitely high but having one-on-one time with each of our beautiful girls is keeping our hearts happy and our spirits up. Gwendolyn falls into a deep restful sleep as soon as I climb into bed with her each afternoon and when she holds Daddy's hand each night for their “sleepovers.”
Thank you all your concern and support for our little girl. We so appreciate you offers of help, your love, and your positive thoughts for all of us.
PS: Eleanora misses her big sissy big time and is giving those sickies her best Kung Fu chop.