Jacob has been doing much better. I actually slept until 10:30 this morning! I walked by the clock when they were doing rounds and blinked thinking I must have read the clock wrong. I don't even sleep that much at home. He did not desat at all yesterday which was wonderful. He is still needing rescue meds pretty often. The attending actually joked this morning that if he keeps it up he will just have to go to another hospital because he is chewing through all of their meds lol. I love the staff here they have been wonderful. Today he has been going longer between needing rescue meds which is great. Yesterday he was waking up every 40 minutes and trying to open up his eyes and move around. It is such a balance between to little and two much. His Oxygen and Heartrate have been great. He was even satting around 87 last night which is beautiful.
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| Jacob's Monitor. Holding Steady. |
They added oral meds
(Valium and Morphine) through his g-tube to help with sedation and to get ready to transition him and ween him off of the IV meds. He currently is on 6 different sedation meds. He is on Fetynal, Dex and Versed through his IV as a continuous drip. When he wakes up he gets
"rescue meds" which is basically a big dose of the same meds he is on by IV. Yesterday they added Penebarb which is another sedation med. The day before he had desatted while getting the Penabarb so I was incredibly anxious when they were going to try it again but he has been fine on it. We think the desatting/bagging he had the few days before was more positional because 2 out of three of the times it happened they were changing his bed and he was rolled onto his side. Now when we change his bedding the nurse lifts him up while I move the bedding and put new bedding under him. It has worked much better. He is on a lot of drugs so he will be weened next week and we expect him to have some withdrawal issues so it will be a daily weening process off each drug.
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| Meds, Meds and more Meds... |
Yesterday he was way more aware of his vent. He kept waking up and scrunching his nose and moving his mouth. He wants it out. I don't blame him AT ALL. They took the penrose drain out of his neck and ENT said the incision spot looks very good. He has about a 2" incision by his rib and one on his neck. More scars for him to show off to the girls when he is older.
They had to put in another IV last night because it went bad again. Poor kid has had so many it is hard to get them and keep them. He has 2 IVs and one Art line so three of his extremities are being used. His arms are still tied to the bed and will be until he is off of the vent. I can't wait until he comes off of that thing so I can hold him again. I miss holding my baby boy. He is very aware that we are here and responds to our voices.
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| My sweet boy resting. |
The plan is that Jacob will go into the OR on Tuesday and they will see how his airway is healing. If it looks good then they are going to put in a smaller vent tube to allow for more room in his airway and give him steroids to help with swelling. If everything looked good then they will extubate him on Wednesday and begin to
"Wake him up". After that then we will be working on weening him off of the medications and teaching him to use his airway again. I am hopeful that he will still have the want to eat because every time they do oral care on him he tries to eat the sponge. Basically since he is on the vent he is not swallowing and they don't want bacteria to build up. So they swab his mouth with a mint antibacterial solution that will clean and moisten his mouth. Every time they do it he chews on it and licks his lips.
We had a really nice visit yesterday from another heart mom who was here with her heart warrior. She brought us a care package full of snacks and things for Aidan to play with. I can't tell you how much it meant to me. I have said it before but its worth saying again. I would never have chosen this path of being a heart mom but I am proud to be a part of such an amazing group of women. Despite what they are going through they always are there for each other. It is really amazing. Thankfully her son Stosh was able to go home yesterday! Praying he continues to do well.
Jacob's cardiologist from home called last night around 9pm. We have the best doctors in the world. What doctor takes time on a Saturday night to check on one of their patients who is out of town? Dr. Heydarian, that's who. He wanted to know how his buddy was doing. Love that man. His pediatrician Dr. Shields has also been checking in on him by messaging and facebook. We are so blessed. I really love all of his doctors and love how much they care about him.
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| Aidan with Jacob's Nurse Jenna. She is his favorite. |
Aidan has been giving all of the nurses and doctors ninja stickers. It is so adorable. All of the nurses are walking around with stickers all over them. He is so excited to teach them about Ninja's. They love him and he has been having so much fun. I am so proud of him for how well he handles everything. Every once in a while he goes over to Jacob's crib and tells him that he loves him and can't wait for him to feel better.
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| I think you need more stickers Jenna. |
I got the picture from CHOP that they had taken of us dropping off the
Sisters by Heart Care packages to the SDU.
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Fellow Heart Sister Christa with her daughters Kaileigh and Gabby,
Jacob and I, Our fetal Coordinator Denise Donaghue who I adore and my mom
delivering packages to the Special Delivery Unit at CHOP. |
It warmed my heart to see Jacob smiling in the photo. I can't wait to see my baby smile again. I know we will get there.
One day at a time...
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