I actually got to hold him Wednesday evening after he was extubated, but I was so nervous. I was so scared that I was going to hurt him or move in a way that would cause him pain. I don't think I moved my arms an inch from the time that the nurse placed him in my arms to the time that she placed him back in his bed (which was close to an hour). My arms were dead but it was well worth it.
Each day Josh got stronger and more of his lines and tubes were removed. By Thursday evening his right and left atrial lines were removed, his pacing wires were gone (thank goodness - I hated to see those poking through his skin), and his chest tube was removed. Even the small dressing over his chest had been removed, giving us our first glimpse at the incision. I think all that remained at that point was his PICC line, his arterial line and his NG tube. I had started breastfeeding him again, but they were still topping him up with a couple of ounces of breast milk through his NG tube after each feed. Our goal was to get him solely breastfeeding again but it would take a little bit of time and a lot of patience.
By Friday it was clear that Josh was ready to leave the ICU. I was so happy that we were finally moving upstairs to the surgical floor. Josh had spent 26 long days in the ICU and finally he was stable enough to get out of there. I will be forever grateful to all the doctors, nurses and other allied health professionals that took care of Josh (and myself) while we were in the ICU. They were all fantastic and I knew that Josh was in good hands when I went home at night - giving him more hugs and cuddles than he could ever hope for.
My mom had picked up a big box of chocolates from Laura Secord to give to the ICU staff to show our thanks and appreciation and I included a thank you card from Josh. I didn't really know what to say - I mean what do you say to the incredible staff that saved your sons life? I decided to write a poem [from Josh's perspective] and it went like this:
I came to the ICU in a really bad state,
but all you doctors and nurses treated me really great.
You all worked so hard to make me well,
and to look at me now you could never tell,
Just how much I had to go through,
the ups and downs and surgery too.
So thank you for all the cuddles and thank you for all your great care,
but most of all thank you for not shaving off all my beautiful hair!
During Josh's stay in the ICU he had to receive 2 CHEO haircuts where the sides of his head were shaved for IV access. He had such a full head of hair, I was sad to see it go. I thought it was a cute ending to the poem :)
Late Friday afternoon, on Oct. 5 - 3 days post-op, Josh was transferred out of the ICU. To be honest it was a little tough to adjust to being on the surgical floor. The staff there is great but we had been in the ICU for so long and we were familiar with the nurses and use to their routines. I don't know how to explain it, I just found the transition a little difficult.
One good thing though about being on the ward was that I could now spend the night with Josh at his bedside, which meant that I could breastfeed him through the night. His NG tube had been removed so we were now breasfeeding full force and it was actually pretty stressful. I had been so used to knowing how much milk he had been getting but with breastfeeding I had no idea. I had no idea how many ounces he was taking and so I often wondered if he was getting enough. That first night was rough, neither of us got much sleep, but we got through it.
On Saturday, Josh's PICC line was removed which meant that he was officially IV free. They we even able to take him off the monitors so he no longer had any lines or tubes attached to him. I wasted no time in dressing him up in a sleeper. Finally he was able to wear clothes! Saturday was my mom's last day in Ottawa - she was flying back to Vancouver Sunday morning and though she was disappointed that she never got to see Josh go home, she knew that he would be going home soon. Thanks again mom for everything. I couldn't have gotten through all this without you.
On Sunday morning my mom came by the hospital one more time to say goodbye and to get in one more cuddle with Josh before heading to the airport. When Robb returned later that morning we got some amazing news from Dr. Maharajh - Josh was being discharged! Josh had lost a little bit of weight from the previous day, but Dr. Maharajh wasn't concerned. He was breastfeeding well and felt he would start gaining weight soon. We were elated. We couldn't believe that after all that he had been through Josh was actually able to go home; 5 days after open heart surgery no less!
So on Oct. 7 after getting our discharge instructions from our nurse and the needed prescriptions for Josh's discharge medications, Robb and I took our little guy home. The only medications he needed after discharge were Lasix (a diuretic) once a day, phenobarb (to prevent seizures) three times a day, and enoxaparin (a blood thinner) twice a day. The enoxaparin was given as an injection - I had to give Josh 2 needles a day :( At the time of discharge Josh weighed 8 lbs. With all that Josh had gone through it's hard to believe that he was able to gain any weight at all, never mind one whole pound ( he was 7 lbs when we first brought him to emerg).
He had spent a total of 4 weeks in the hospital - 26 days in the ICU and 2 days on the surgical floor. During his course in the hospital there were 10 different teams involved in his care including:
Cardiology
ICU
NICU
Neurology
Hematology
Respiratory Therapy
Genetics
Infectious Disease
Vascular Access
Physiotherapy
And he received so many different medications. These are the ones that I know he received. He received other meds in emerg and in the OR but I'm not sure what all he was given. At any rate it's a pretty impressive list:
Prostaglandins
Morphine
Versed
Phenobarbital
Heparin
Enoxaparin
Lasix
Dopamine
Epinephrine
Flamazine
Potassium
Magnesium
Calcium
Glycerin Suppository
Gentamicin
Ampicillin
Vancomycin
Ancef
Steroids (high dose - not sure what kind)
Albumin
Milrinone
Ranitidine
I just want to take this opportunity to once again express my undying gratitude and appreciation for each and every individual who helped care for Josh in some way, shape or form. CHEO is an amazing facility and it will always hold a special place in my heart.
This picture was taken the same day Josh was discharged from CHEO. Clearly he is happy to be home!
No comments:
Post a Comment