Thank you for praying for Isla. She is currently at home, but here is a little synopsis of what has happened this week. (If you are needing more clarity into what is going on with Isla's medical needs as a whole, please read the blog prior to this one)
We took Isla to the PICU on Monday (Feb 9) because her blood gas level (which shows CO2 retention) was so high. However, when we got there, she had bloodwork done again and her CO2 number was lower. Those results generally do not fluctuate that much within a couple of days.
We had hoped that was good news...
Due to the complexity of Isla's needs, the Seattle Children's team wanted to be very thorough in testing, imaging, and communication prior to starting Isla on BiPap.
We were also communicating with her team at Children's in Philadelphia.
They all agreed that Isla's symptoms and test results are proving a decline with her thoracic insufficiency. We feel very sad.
Isla had a CT and a "cinematography CT" to see her airway and lungs and to be able to watch her breathing through the CT. Her sleep study done in December showed her complex airway is causing moderate obstructive apnea. Her airway has many angles in it. Surgical intervention has not been an option so far. We will be in discussion with Isla's aerodigestive ENT here in Seattle to see if they have any insight to offer for her airway needs.
The CT also showed that Isla's little lungs are not filling all the way when she breathes in. Her breathing is shallow, which also leads to her holding onto too much Co2 when breathing out.
She is still experiencing times of desaturation with her blood oxygen and times of tachycardia with her heart rate. If she is not at rest, this happens very easily now.
The holding of Co2 is of high concern and causing her episodes of weakness, fatigue, some lethargy, etc.
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| Isla was so brave! She held so still for so long! |
Isla was started on BiPap Tuesday night. Unfortunately, there was an error with respiratory therapy that we were not aware of, and the machine used was not the one the doctors wanted Isla on for specific reasons according to what she is needing. There was also issue with her breathing not being in sync with the machine.
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| Practice wearing the BiPap masks to decide which one was most comfortable (Tuesday) |
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| Stella dolly had a BiPap breathing mask, too. (Tuesday night) |
ISLA WAS A WARRIOR and even though she was so scared and not fully understanding what was happening she asked for a "timer for morning" (to help her feel there was an end point) and boldly wore the BiPap ALL NIGHT LONG. There were constantly times of the alarm going off and while she felt so triggered by it, she continued to wear the BiPap and try to sleep. WE ARE SO PROUD OF HER!
She had more labs done right away in the morning. We were sad to see that the Co2 was higher again and it was disappointing to find out about the incorrect machine being used.
Isla woke up on Wednesday very tired - we could tell she was not just physically tired, but struggling mentally and emotionally, too. She was trying so hard to function while her brain was hitting fight or flight. We went outside for a walk in the sunshine; she loved it so much. But, as we came back in, her heart sunk and she was so scared. Medical trauma and exhaustion are so real. By early evening she hit her limit.
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| sunshine and beautiful flowers! Such a gift from God! |
Isla's medical team has been so kind and caring. They have been thoughtful and put all of Isla's needs as priority. They know how hard this is for her not only physically, but mentally and emotionally as well. The team really respected us as a medical family and were very open to us being a driving force in decisions. We advocated and they really listened. Being inpatient is really difficult for Isla. The plan was to stay inpatient, but with seeing how Isla was struggling and unable to process all that was happening, we knew that another night, starting the BiPap again, was going to be even harder and possibly create more trauma surrounding it. She is going to need this breathing support moving forward. This is going to become a daily needed thing. We did not want it to become even scarier and create a negative experience if we could help it.
We, along with her medical team, decided to have Isla go home to feel more safe and secure. We are working with her team outpatient, and of course, if Isla gets worse in any way, we will head back to the hospital.
Her labs were not the worst they could be, but not great either. It is a gray area/fine line...
But she was really struggling mentally and emotionally too.
It is really difficult to make these decisions. We were told that a machine was being ordered, the team was discussing the best levels for Isla to start with at home, we will be working with a team in the sleep center to help Isla acclimate to the BiPap and to do a titrating sleep study, and if she shows any signs of getting worse, we will be back at the hospital.
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| Little ray of a rainbow showing up during a hard morning remembering God is faithful in all his promises. |
As soon as we walked out the doors of the hospital, Isla broke down. Big tears. The weight of not feeling well along with the heaviness that it brings mentally and emotionally is so deeply difficult. Having a rare syndrome and medical needs is chronic... it is life-long. The difficulties don't stop. Not being able to understand it all is scary. It's exhausting. She is truly a warrior.
We've had communication with multiple doctors since arriving home Wednesday night. Unfortunately, nothing happens fast... so we are praying that Isla's machine will arrive very soon.
We will be going in for labs again next week to check Co2 levels. We will be talking to Isla's surgeon in Philadelphia again this next week as well.
Her surgical team in Philadelphia had called to schedule her next surgery, but planning for that is on hold for now as we help Isla's breathing and figure out all the complexities going on with her health - we need it to be safe to travel and do another surgery.
Isla's body is tired. Things are shifting. Her brain still wants to go, go, go, but her body is saying much different. So hard for her to understand. We are limiting her activity and are anxious to get her going on her BiPap each night. We pray that her body will be in sync with the machine, that she will gain such good breathing help with it, that she will not have adverse side effects from it, and that her Co2 numbers decrease and don't cause any issues in her body.
We are taking things a day at a time and watching her close.
Please keep praying for Isla. Please pray for us as we communicate with so many doctors and make more decisions for our warrior girl. This is hard. We are struggling. It hurts so much to see your child suffering. We are holding on to Jesus - His faithfulness never fails - it is through him that we have HOPE. He is our comfort and refuge.
