Alyssa was taken to the ER at Dupont on Friday due to her oxygen saturation level dipping down into the 70’s. We didn’t have oxygen at home, so off to the ER we went. This was her 1st stay at DuPont. All of her care has been at CHOP with the exception of her pulmonary care. Alyssa is home now and doing well with the support of oxygen. We hope within the week to have her Bi-PAP machine working fully to her benefit. So without further ado here are the excerpts:
December 5th-December 7th : I found a computer! They couldn't hide it from me. Friday night started with me out alone, doing some Christmas shopping only to follow up with a hospital visit later in the night. To recap the last month had been relatively boring. Most of our appointments were in home. Alyssa had a few routine doctor appointments but nothing too interesting. We spoke with Alyssa's pulmonologist last week and she was placing an order for us to have oxygen and a Bi-Pap machine at home for Alyssa. These last few weeks have been filled with catching up on/organizing paperwork, scheduling appointments, following up with doctors on the phone and managing the some other thing for the older kids.
Alyssa receiving her Nebulizer treatment and Chest PT.
We'd appreciate prayers for affective treatment for this lung issue for Alyssa and comfort she is just cranky. That'd we'd seamlessly get supplies ordered and delivered home for management of Alyssa's sleep apnea prior or near the time of her discharge. Also a neat lady that works with Alyssa was recently diagnosed with and recovering from Cancer treatment please pray for her recovery. Hannah (CB Hannah317) is also recovering from a recent surgery. Not to mention several friends and supports recovering from the flu, stomach bug and other fickle colds prayers for them to heal and return to their activities would be welcomed too. I keep promising to update a few different events and I really want to/need to do this. Prayers for me to sleep better so I can get better organized in thought and action would be great. Aside from the recent setback over all we are okay. Hope you are too. Happy belated Thanksgiving.
Well we are still at DuPont. My understanding is that they want to wean Alyssa off of the supplemental oxygen and then watch her to see how she does. She has a non-specific lung infection... in other words they know what it's not: RSV, Flu, and Pneumonia~ which is great. Yet without a clear idea they are shooting in the dark on treatment. Alyssa is on both oral steroids and antibiotics to treat this infection. In addition nebulizer treatments w/Chest PT every 4 hours (I do it at home 1-2 times a day) along with the oxygen. Its working as she is bringing up lots of gunk. They use a Yankour (a suction tube for the mouth) to get out the secretions other wise she swallows it and then vomits some time later. Funny I was talking to Kim (Alyssa's Clinical Nurse at home) about the Yankour the other day. Three days ago I had never heard of it or seen one. Now I'm ready to take it home and use it! We know Alyssa has obstructive sleep apnea so I think there isn't a rush to get her out till we know when we will have oxygen and the Bi-PAP at home. She'll only need it at night thankfully. Thanks for the continued prayers. By the way Ed is doing a great job wrangling the older crew. Almost wonder if I'm needed! He got them to clean; they went out on the town, sounds like their having a blast with their dad. I'm glad that we are able to "tag" team like this that IS half the battle. Okay till later~
Alyssa loved her therapy and would often fall to sleep during the session.
Okay the what- if's are starting in my head...what if this is pulmonary hypertension? They are treating this as a infection because everything else came back okay...so what if this is PH? I am looking forward to the break of night with dawns light…Which means rounds will soon start. Then I can talk with the doctor and get some facts: asleep with O2 Alyssa is at 97% dropping occasionally to the mid/low 90"s. Without she is all over the place but not lower than 84% unlike at home Friday when she dropped to 71%
Now either b/c of less intake or I don't know why Alyssa isn't wetting her diapers but is having loose stools. So she may need to be hydrated...how this will all play out...You got me! I am trying to stay present in the grace and gifts from God. Even though I fall short he does not. Prayers that Alyssa will "bounce" back would be great that whatever is going on will be well managed and resolved allowing her to continue making strides...Sorry for the choppy nature of this entry on a strange hospital PC/TV and it isn't easy to type or see.. I hope this makes sense enough to read. More later
On this PC/TV again!! (I’m) feeling better now Alyssa and I both. We enjoyed a visit from Nancy and Tammy. What a nice way to pass an hour or two chatting' it up with friends. It definitely was refreshing. When I got back to Alyssa's bedside, she was just waking from a nap and ready for her lunch. I had an opportunity to talk with the Pulmonologist and Alyssa does not have pulmonary hypertension. However many issues that she is dealing with can lead to it if not well managed. Alyssa has a infection and it is clearing. She will come home with oxygen. We will find out the usage of it tomorrow and she also meets with her Pulmonologist tomorrow before we are discharged.
Marta I do suction Alyssa nasal suction but never done oral suction I was told today the way you had mentioned is good for kids that have a sensitive gag relax, which Alyssa does? I just have to get comfortable with it all.
Lord willing, we will be home sometime tomorrow. Thank you for staying updated and support. It's nice to have a place o spill my thoughts, reflect, get encouragement and get back on track. It's not easy, but this is how it is and I thank God for continual presence. To take a thought expressed by Elizabeth George: "..With a heart full of faith and hope, with God by your side and by his great grace" I can love him no matter what b/c he has seen and does oversee every detail of my life. At 2 or 3 am it's hard for me to stay focused on this fact, multiple sleepless nights make this promise feel distant, ongoing trials cause me to wonder but deep down I know it to be true.. I've got to trust and obey. Next time I hope to be updating you from home! Tammy and Nancy your visit meant so much thanks you for coming down!
We are home! Alyssa and I arrived safely home from the hospital yesterday afternoon. She was released with oxygen and as I am learning with hospital discharges once you come home there is still "stuff' to do to meet the doctor’s orders. After reaching home the DME (Durable Medical Equipment) Company came by with the oxygen tanks. We weren't totally overwhelmed with the idea of having this in the house as we had some when Alyssa was on Hospice service. The difference is this time we are using it, which is overwhelming at first. Prior to the hospital stay, we were I the midst of re-arranging Alyssa's room to better organize the equipment and supplies. She was also set to graduate from the bassinet to a crib. The crib arrived while she was in the hospital so she got to take her first test run in it last night~ she loves it. We love that we can see her without having peer over the sides or under a canopy.
So we had to make room for the air-room converting oxygen machine, the 2 medium size tanks, 3 small tanks, and the pending "M" tank a.k.a the BIG KAHUNA all of which are back up tanks and/or tanks for when we are out and about. Right now Alyssa needs oxygen (and the bi-pap machine) at night. During the day she only needs the oxygen if her saturation level drops below 93. So after getting a lesson or two on how to handle the oxygen, I was out again getting medication. Finally after her night routine of a Nebulizer treatment and Chest PT ... I was able to better relax and enjoy being back home.
We woke up this morning and headed out the door to fulfill some longstanding appointments the first was for her 6 month Ultrasound : a cancer screening for Whilms Tumor and the 2nd with her Orthopedic doctor. Both went well. For fun Alyssa threw in a visit with a GI we had never met prior b/c her G-tube was significantly leaking. Thankfully we happened to be in the same building as a GI clinic, so we were squeezed into the schedule. It turns out buttons often leak after/during illness. Too much to explain her suffice to say we added another cc of water and there is improvement. We got home about 3:30 and shortly thereafter the DME Company was back this time to bring and teach us about the Bi-PAP machine. Unfortunately miscommunication, and a petite baby = not being able to use the Bi-PAP. Yep we have it but can't use it till they can secure a properly fitting mask/head gear. The respiratory therapist from the DME was concerned that the hospital would release Alyssa without training and proper equipment. The hospital therapist put the oweness on the DME Company. In the middle lies Alyssa. Thankfully the oxygen is doing a wonderful job at keeping up her stats. We also have the support of the pulse ox, and if she should need it the apnea monitor.
Tomorrow we follow up with Alyssa's pediatrician. Hopefully she will be getting the H1N1 at this visit too. On the fence about it before but now seeing how easily her respiratory system can weaken, it's a faith filled leap to a needle prick. Our hope is that it will only benefit her. Okay I'm zonked and a few loose ends yet to tie up!! Alyssa at home w/oxygen resting.